If you are a Good Morning America viewer, you saw Robin Roberts announce her decision today to remove her wig and appear on the air with her nearly bald head. Robin has been battling breast cancer for a few months now and detailed her struggle on GMA. As part of that reveal, she chronicled her decision to shave her head when her hair fell out, then appeared in a fashion show in February without her wig and finally appeared today with her own hair, now that it has started to grow back. In doing so, she made a comment somewhat to the effect that her hair represented the life she was holding on to and not where she was now. The statement was in many ways profound.
One of the most challenging aspects of caring for Dear Son, at least for me, was giving up my career, many years ago to care for Dear Son. Over the years, it was a struggle. It was not enough to manage his declining health or his loss of milestones, but without a career, there was never really enough money left to do much of anything so along with the career went any kind of goals. Because I loved what I did, I found giving up that life to be very difficult. It was hard not really fitting in anywhere and working menial jobs so I could care for him. The boredom level was extremely high and I felt punished somewhat, that because we don’t have daycare in this country for the disabled, that I was forced to live this life.
Earlier this year, I had the opportunity to attend a black tie event for the Respite House. It was a lot of fun planning for the event and getting dressed. Earlier that day, I was busy caring for Dear Son and happened to change a record number of diapers. I remember thinking about how nice it was to have a corporate type event to look forward to that evening and to be able to get dressed up and go out. At the dinner that evening, I remember the food and how good it tasted. It reminded me of the many corporate dinners I attended. Part of my job was to entertain clients so it happened fairly regularly that I would take them to dinner and an event, so eating out was a pretty normal part of my job. I’d travel to different cities and always managed to get in some personal time each time I went out of town. In addition to the client travel, we’d have our department meetings in some fun locations. As the evening went on, I met a lot of wonderful people. It was a really fun night and during that time, I would slip back into the Corporate world that I left behind, if just for a few minutes. Ironically, as soon as I’d remember back to a corporate event, I’d shift my mind back to Dear Son, as if the two could never really co-exist in the same evening, let alone the same event. During the fundraiser, they showed a clip of the Respite House that involved many of the nursing staff caring for the children. It was many of the same duties I did at home. It felt odd to be sitting at the fundraising table, when I was really a caregiver, as if my dirty little secret would be revealed anytime soon.
Make no mistake, I love Dear Son deeply. I’d never trade what I do for anything or anyone. But that didn’t mean that a part of me wouldn’t like to go back, to a time when I had a job that I loved and made a real income. In my dreams, I would often wish for a time when I could work full time and that’s part of the reason you will always hear me stressing the importance of daycare.
But something happened over these last few weeks. It was a bit of minor thing but it was huge for me. It started with the botox. As you are aware, one of Dear Son’s biggest issues was his lack of saliva control due to his deterioration. He’d choke on his salvia night after night and I was afraid he would aspirate and get pneumonia or worse yet, choke to death. The botox was great however it peaked at around the three week mark and then choking began to return. At that point, I had a conversation with the ENT over the phone about possible next steps. The next steps had included removal of the saliva glands, along with a Nissen and if that didn’t work, then we’d have to consider a trach.
I thought of the trach and was not very excited. I am rather squeamish and have a very weak stomach so the trach bothered me on many levels, one of which was how Dear Son would ever manage that and secondly, how I would ever be able to care for that myself. It would be very selfish if I had to deny Dear Son care he needed based on the fact that I had a weak stomach. On the flip side, the thought of caring for that would be very stressful. I began to have some conversations with a nursing friend of mine with regards to what a trach entailed and how it might work for Dear Son. She’s a pediatric nurse and cared for many Special Needs children, and many with trachs. I worried a lot about Dear Son being able to have a trach at all since he can’t hold his head up very well. I learned there were different types and there were things that we could maybe do to help him with this. Even though a trach might be far off, it’s always better for me to have some time to think these things through, as I don’t care much for surprises.
Once I understood how they worked a little better, came the larger decision…how would I ever tell Dear Son? Although we weren’t at the point where a decision for trach would need to be made, I began thinking about how this might play out. Typically, whenever I make a change for Dear Son, or the doctor makes a change, I tell Dear Son about it. I tell him what it going to happen, why it’s going to happen and I try to be pretty honest about it. I look him in the eye and always tell him that I wanted to let him know before it happens. I usually do this when he’s ready for bed and when we have a little quiet time or when he’s ready for a nap. I try to tell him a day or two before when it will happen since if it’s too far out I don’t want him to worry. I also make certain to include just the information that he needs and not elaborate on it too much. More often than not, he’ll lick my hand, which is his way of giving me a kiss. It means, “Thanks for telling me, Mom.”
But as I imagined the scenario in my head, I couldn’t imagine ever telling Dear Son that we were going to have to cut a whole in his throat. I could only imagine how that would break his spirit. Here is a young man who has been through a lot in his life. He has a body that didn’t work very well and a body that he spent years on in therapy trying to get it work somewhat like a normal person. To make matters worse, he ended up losing the very skills that took years to attain. And now, I was going to tear a whole in his throat. In addition, this would only present more issues for him, the panic of whether or not someone would or could help him if I wasn’t around and a whole host of different scenarios. I couldn’t imagine that.
On top of that, was how it would affect another hospitalization? What happened if he got another pneumonia? What exactly am I doing? Am I extending a life out of selfish purposes or am I really doing things to help him when he’s sick? At what point is too much or at what point is enough?
After serious consideration, I decided that I would not do a trach. I made the decision that whatever happened, it was not going to happen for Dear Son. All other factors aside, I couldn’t imagine having that conversation with Dear Son. And that was it.
After I made that decision, I was rather proud of myself. For the first time in a long time, I was able to be proactive about a decision that would potentially save or extend his life. And I felt good about it. For so long, all of the decisions were always about extending his life or doing whatever I needed to do to make him well or to make things easier for him. I don’t regret any of them. It was always very comfortable for me. They were always the right decision at the right time. But this one was huge. For the first time, I made a decision based on where we were right now, not where I’d want him to be or rather, to extend his life at any costs. I made the decision from a position of strength. By making the decision now and thinking about it far in advance, I could really explore all of the options. I didn’t feel I was taking anything away from him by not choosing to do it but rather I was giving something to him. I was allowing him to keep his spirit. I was allowing him to keep his body in tact. I was allowing him to be him, no matter what happened. And whatever happens, it will be o.k. I will love him no matter what works or doesn’t work anymore.
So today, when Robin Roberts said she was making a decision based on where she was now and not holding onto the life she had, I had to agree. For the first time, I made a decision on where we were now, not trying to hold onto the life he had, or we had, at any cost. And that felt really good. Sometimes, we have to let go to move forward. And sometimes, we have to be pushed. This time, I did it all by myself.
Monday, April 21, 2008
Sunday, April 13, 2008
The Memory Keeper's Daughter
I remember distinctly the relief after my prenatal testing when I found out the baby would be “normal.” No more worrying. I don’t know what I would have done if I found out the baby wasn’t going to be normal. I mean, it’s not like I wouldn’t have the baby, it’s just that it would have been a different experience, maybe taken the fun out of the pregnancy. Back then, in 1991, having a baby with any kind of retardation seemed like a pretty big deal. It was like the “worst case scenario” of the pregnancy world. Since that time, I’ve seen some real “worse case scenarios” but back then, that seemed about as bad as it could get.
Of course, my Dear Son wasn’t normal. He wasn’t normal on day one or any day after that. He had breathing difficulties and turned blue within the first twenty four hours. He had “suspected seizures” on the first day and the journey began.
The first few years were a bit of a blur. It was a lot to learn the whole “system” of healthcare. I remember going into a school in one of the early years, when he was in elementary school. They were getting ready to transition him to the regular school system and I had asked to see several classrooms/schools so I could better understand the placements being considered. I asked to see two of the schools they were considering that had children “below” Dear Son’s level and two schools “above” his level. (When I say “schools” they were actually different classrooms although all of them were also located in different schools.)
One in particular was quite scary. It had a lot of retarded or severely delayed children there. It was past capacity and the day I visited seemed very short staffed. I remember walking in there and thinking it was like a pediatric version of “One Flew Over the Cuckoo’s Nest.” I was totally scared. There were kids running around, one was standing on his head, and it was total chaos. There were about forty to fifty kids in the room. One little girl came up and grabbed my hand and held it. I wanted nothing to do with this group, but I couldn’t not hold her hand. All I could think about was getting out of there fast. Looking back, I think there were many children with behavioral issues in addition to their mental disabilities. There were some with physical disabilities as well but I knew it was not the place for Dear Son.
Over the years, I became more comfortable being Dear Son’s mother. Make no mistake, I always loved Dear Son, I had never been around anyone disabled so I didn’t know what to do. I wanted to be a good mother but it takes a while to learn how to do basic things. Prior to having Dear Son, I never had any desire to work with Special Needs children or adults. I am not sure that I still do, however I am no longer afraid of them.
Fast forward to last year when Dear Son was at the Respite House. On our last day there, there were three mentally and physically disabled children receiving therapy in the main room. As I looked at each child, I saw how beautiful they were. I saw that first. I looked at them and for the life of me, I thought they were perfect. Although they had issues, none of that mattered anymore. I thought about that a bit and realized it took me sixteen years to get to that point. Maybe I was there sooner, who knows. But I can certainly thank Dear Son for changing all of that.
So it was really interesting to watch Lifetime’s, “The Memory Keeper’s Daughter.” It reminded me of the time, when Dear Son was born, and having a child with Down Syndrome or a disability was something no one wanted. I mean, why else are we testing for that?
As I watched the movie open, I saw the baby and thought of how beautiful she was. I remember the baby looking the nurse in the eyes when she was going to drop her off at the home. As the movie progressed and they visited the “home” it was upsetting to me to think that disabled children were given away or are still “put away” in a home. In fact, it’s still a pressure today, to think about “putting them in a home”, something I never want to do with Dear Son. The movie hit home with me and was very difficult to watch because now after having a baby with disabilities, I can not for minute, imagine life without Dear Son. During the commercial, I went into his room, to check on him and whispered, “I love you” to him.
All of this made me think about how different it is today. The internet has changed a lot of things. All of the bloggers with special needs children, especially the younger ones, don’t realize how lucky they are to have the internet. Back when Dear Son was born, there was nothing. It was much more isolated back then to have a child with disabilities. It’s not like you could “google” anything when you had an issue.
But more than that, is how time is changing. Recently, my niece and I began having more e-mail conversations surrounding pregnancy, now that she is pregnant with her first child. She is a beautiful young woman and it’s really wonderful to see how excited she is about this baby. I think she has taken a picture of her pregnant belly nearly ever day so far, or so it seems. In every picture, her face is absolutely glowing with excitement. She is smiling ear to ear and is so happy. A few weeks ago she told me she was expecting a girl. In addition, she decided to name her Gwen. She began referring to Gwen in all of the e-mails. I thought that took a bit of the fun out of things and that I always liked it a bit more when people didn’t announce the sex of the baby until it was born. I didn’t say anything though.
As the weeks passed, we continued to write. I opened one e-mail recently and she mentioned that she was no longer going to have any more tests done on the baby. She said it really didn’t matter anymore because if she found out she was having a baby with disabilities, it wouldn’t change anything. She was already in love with Gwen and nothing would change that so she figured she would just enjoy the remainder of the pregnancy. I should also mention to you that her husband has MS. And then she said something quite interesting:
“You know, I think by naming her already, it has made her a "real person" to us. Everything is Gwen this and Gwen that :) I think we have bonded with her that much more just by naming her. She's no longer "the baby" or "it," she's our little Gwenyth Faye :) That's why when the counselor was telling me about all sorts of other tests we could have done, I decided against all of them. I had the initial screening and the 20 week screening done, and everything looked fine. I have no interest in testing my blood to see if I am carrier for cystic fibrosis. I'm not the type of person to say, oh you know what, this baby isn't going to come out perfect so let's scratch this one and try again. I truly believe that God doesn't give us more than we can handle. I like to look at obstacles like opportunities.”
She went on to talk about the changes her husband made when he was diagnosed with MS and how those were positive for them. Then she wrote,
“I know at times, more often than not, it might get overwhelming caring for Dear Son, but you're so good with him and you love him so much. I have never seen you get frustrated or yell at him, not once. I'm sure you may feel frustrated at times, but it's so nice to see how you take such great care of him. You have never once acted like Dear Son is a burden on your life. I love that you are so passionate with all that you do for Dear Son. I think it is remarkable.”
As I thought back over the years, I thought that we are finally beginning to change the way people think about people with disabilities. Maybe they are no longer “challenges” but “opportunities.” Or maybe, they are just who they are meant to be, “beautiful babies.” Thank you Dear Son for showing me the way.
Of course, my Dear Son wasn’t normal. He wasn’t normal on day one or any day after that. He had breathing difficulties and turned blue within the first twenty four hours. He had “suspected seizures” on the first day and the journey began.
The first few years were a bit of a blur. It was a lot to learn the whole “system” of healthcare. I remember going into a school in one of the early years, when he was in elementary school. They were getting ready to transition him to the regular school system and I had asked to see several classrooms/schools so I could better understand the placements being considered. I asked to see two of the schools they were considering that had children “below” Dear Son’s level and two schools “above” his level. (When I say “schools” they were actually different classrooms although all of them were also located in different schools.)
One in particular was quite scary. It had a lot of retarded or severely delayed children there. It was past capacity and the day I visited seemed very short staffed. I remember walking in there and thinking it was like a pediatric version of “One Flew Over the Cuckoo’s Nest.” I was totally scared. There were kids running around, one was standing on his head, and it was total chaos. There were about forty to fifty kids in the room. One little girl came up and grabbed my hand and held it. I wanted nothing to do with this group, but I couldn’t not hold her hand. All I could think about was getting out of there fast. Looking back, I think there were many children with behavioral issues in addition to their mental disabilities. There were some with physical disabilities as well but I knew it was not the place for Dear Son.
Over the years, I became more comfortable being Dear Son’s mother. Make no mistake, I always loved Dear Son, I had never been around anyone disabled so I didn’t know what to do. I wanted to be a good mother but it takes a while to learn how to do basic things. Prior to having Dear Son, I never had any desire to work with Special Needs children or adults. I am not sure that I still do, however I am no longer afraid of them.
Fast forward to last year when Dear Son was at the Respite House. On our last day there, there were three mentally and physically disabled children receiving therapy in the main room. As I looked at each child, I saw how beautiful they were. I saw that first. I looked at them and for the life of me, I thought they were perfect. Although they had issues, none of that mattered anymore. I thought about that a bit and realized it took me sixteen years to get to that point. Maybe I was there sooner, who knows. But I can certainly thank Dear Son for changing all of that.
So it was really interesting to watch Lifetime’s, “The Memory Keeper’s Daughter.” It reminded me of the time, when Dear Son was born, and having a child with Down Syndrome or a disability was something no one wanted. I mean, why else are we testing for that?
As I watched the movie open, I saw the baby and thought of how beautiful she was. I remember the baby looking the nurse in the eyes when she was going to drop her off at the home. As the movie progressed and they visited the “home” it was upsetting to me to think that disabled children were given away or are still “put away” in a home. In fact, it’s still a pressure today, to think about “putting them in a home”, something I never want to do with Dear Son. The movie hit home with me and was very difficult to watch because now after having a baby with disabilities, I can not for minute, imagine life without Dear Son. During the commercial, I went into his room, to check on him and whispered, “I love you” to him.
All of this made me think about how different it is today. The internet has changed a lot of things. All of the bloggers with special needs children, especially the younger ones, don’t realize how lucky they are to have the internet. Back when Dear Son was born, there was nothing. It was much more isolated back then to have a child with disabilities. It’s not like you could “google” anything when you had an issue.
But more than that, is how time is changing. Recently, my niece and I began having more e-mail conversations surrounding pregnancy, now that she is pregnant with her first child. She is a beautiful young woman and it’s really wonderful to see how excited she is about this baby. I think she has taken a picture of her pregnant belly nearly ever day so far, or so it seems. In every picture, her face is absolutely glowing with excitement. She is smiling ear to ear and is so happy. A few weeks ago she told me she was expecting a girl. In addition, she decided to name her Gwen. She began referring to Gwen in all of the e-mails. I thought that took a bit of the fun out of things and that I always liked it a bit more when people didn’t announce the sex of the baby until it was born. I didn’t say anything though.
As the weeks passed, we continued to write. I opened one e-mail recently and she mentioned that she was no longer going to have any more tests done on the baby. She said it really didn’t matter anymore because if she found out she was having a baby with disabilities, it wouldn’t change anything. She was already in love with Gwen and nothing would change that so she figured she would just enjoy the remainder of the pregnancy. I should also mention to you that her husband has MS. And then she said something quite interesting:
“You know, I think by naming her already, it has made her a "real person" to us. Everything is Gwen this and Gwen that :) I think we have bonded with her that much more just by naming her. She's no longer "the baby" or "it," she's our little Gwenyth Faye :) That's why when the counselor was telling me about all sorts of other tests we could have done, I decided against all of them. I had the initial screening and the 20 week screening done, and everything looked fine. I have no interest in testing my blood to see if I am carrier for cystic fibrosis. I'm not the type of person to say, oh you know what, this baby isn't going to come out perfect so let's scratch this one and try again. I truly believe that God doesn't give us more than we can handle. I like to look at obstacles like opportunities.”
She went on to talk about the changes her husband made when he was diagnosed with MS and how those were positive for them. Then she wrote,
“I know at times, more often than not, it might get overwhelming caring for Dear Son, but you're so good with him and you love him so much. I have never seen you get frustrated or yell at him, not once. I'm sure you may feel frustrated at times, but it's so nice to see how you take such great care of him. You have never once acted like Dear Son is a burden on your life. I love that you are so passionate with all that you do for Dear Son. I think it is remarkable.”
As I thought back over the years, I thought that we are finally beginning to change the way people think about people with disabilities. Maybe they are no longer “challenges” but “opportunities.” Or maybe, they are just who they are meant to be, “beautiful babies.” Thank you Dear Son for showing me the way.
Wednesday, April 09, 2008
Designed to Sell
In July of last year, I started a business as a Professional Organizer. Recently, I completed my first “home staging” job and thought you might like to see the results.
Home Staging is a relatively new area in real estate. Home Staging involves decluttering, de-personalizing and organizing your home to show off it’s best features while eliminating the negatives. More often than not, this involves doing much needed repairs along with painting and cleaning. Most people don’t know where to start and that’s where a home stager comes in. Examples of a home stager might be: an Interior Designer, a Professional Organizer or a Real Estate Professional.
Recently, I was called to this home to assist the seller. The seller was recently divorced and the husband had removed most of the furniture and left the home with many needed repairs. She had a few real estate professionals who advised her to sell the home “as is”. I had met this client to help her organize her home office and I mentioned that this home could be fixed up and that she could get a lot more money. I’ve always had the ability to take the worst room or house and see it’s “potential”. In this case, I think it turned out quite nice.
Let the Staging Begin
For this client, I helped her declutter, organize, created a space plan for the furniture, and selected a color palette for each room. We agreed on a budget and I shopped for each room. In addition, I organized all of the kitchen cabinets and placed labels on every one as an added feature for a buyer. No more moving in and not knowing where to put anything!
The Kitchen
"Before" Pictures
Home Staging is a relatively new area in real estate. Home Staging involves decluttering, de-personalizing and organizing your home to show off it’s best features while eliminating the negatives. More often than not, this involves doing much needed repairs along with painting and cleaning. Most people don’t know where to start and that’s where a home stager comes in. Examples of a home stager might be: an Interior Designer, a Professional Organizer or a Real Estate Professional.
Recently, I was called to this home to assist the seller. The seller was recently divorced and the husband had removed most of the furniture and left the home with many needed repairs. She had a few real estate professionals who advised her to sell the home “as is”. I had met this client to help her organize her home office and I mentioned that this home could be fixed up and that she could get a lot more money. I’ve always had the ability to take the worst room or house and see it’s “potential”. In this case, I think it turned out quite nice.
Let the Staging Begin
For this client, I helped her declutter, organize, created a space plan for the furniture, and selected a color palette for each room. We agreed on a budget and I shopped for each room. In addition, I organized all of the kitchen cabinets and placed labels on every one as an added feature for a buyer. No more moving in and not knowing where to put anything!
The Kitchen
"Before" Pictures
"After" Pictures
These are the "after" pictures of the kitchen. The baseboards and moldings have been repaired and painted white. The floor has been updated. I made custom valences and drapes to go over the window and patio doors. I found a striped tablecloth at Target that tied in the kitchen and living room colors so I decided to use it and make the drapes and valences. I don't sew so I managed to make them all by using the finished edges of the tablecloths and then used an iron on mending tape. I measured precisely and then matched the stripes so the "repeat" was correct, much like you would do if you were hanging wallpaper. I made both window treatments, napkins and the kitchen towel that is hanging on the stove. I stayed within the household budget by doing all of the window treatments, curtain rods, rings, wood for the valences and "L" brackets for $65. You can see part of the window treatments below. I had to close the patio door drapes in order to take the pictures since the outside light was so bright. I added a matching cotton rug and fresh tulips to complete the staging. In the plant window, (I don't have an "after" picture of that.) I purchased some white pots from IKEA and planted an herb in each pot. I thought perhaps a buyer who likes to cook, might want to have their herbs in the kitchen and cook with them. I know I'd like that since I love to cook with fresh herbs.
The Living Room
This is the "before" picture of the living room. The client preferred to keep the bright yellow color on the walls instead of neutralizing it. I worked the color palette around this and chose white, yellow and brown as the colors with aluminum as the metal element. The walls and roses are yellow, the baseboards, drapes, vases and candles are white and the sofa, curly willow and decorative accents are brown. The client had the armoire in the basement and the desk in the foyer she was going to toss. It was painted a dark green. Instead, the desk was repainted and I built the wood elements of the room around the color of the armoire. I added a coffee table, baskets and side table from IKEA, along with white vases and candles. I added metallic table lamps with modern white drum shades. I chose aluminum elements in the curtain rods and floor lamp. Drapes were from Pottery Barn. I made the rose floral display in the foyer.
The Lower Bath
Here is a "before" and "after" picture of the lower bathroom. The bathroom was decluttered, organized and then "staged." I used accessories the client had in her home, just used them in new ways. The vanity was painted white and the handles on the cabinets were updated to a polished chrome.
An Upstairs Bath
I didn't have a "before" picture of this bathroom however here is one of the upper bathrooms "after" staging. All that was done, was painting the walls white, using a new set of towels the clients purchased and then adding some fresh tulips and a candle to make it nice. I chose the tulips because the green in the leaves matched the green stripes on the towels.
Monday, March 31, 2008
Delay
My apologizes for the delay in posting however I have been under the weather for over two weeks now. I am still not feeling very well and I now have an ear infection. I have been doing my best to take care of Dear Son, work and get some sleep when I can and not much else.
Dear Son just completed his Spring Break which meant over a week of 24/7 caregiving which can be a lot. I was fortunate to have his Dad split up the time with me, taking the first four days so I only had the last five days to care for him. It is a lot of work now that he is physically much larger and even more challenging when I am not feeling very well. Thankfully, Dear Son is not getting sick so that helps a bit even though his seizures have been increasing.
I suspect I will not have another post for at least a week until I can get to feeling a little better. It's hard to be creative until my head clears a bit. Thank you for being so patient.
Dear Son just completed his Spring Break which meant over a week of 24/7 caregiving which can be a lot. I was fortunate to have his Dad split up the time with me, taking the first four days so I only had the last five days to care for him. It is a lot of work now that he is physically much larger and even more challenging when I am not feeling very well. Thankfully, Dear Son is not getting sick so that helps a bit even though his seizures have been increasing.
I suspect I will not have another post for at least a week until I can get to feeling a little better. It's hard to be creative until my head clears a bit. Thank you for being so patient.
Tuesday, March 18, 2008
Follow Up
As a follow up to the last post on Dear Son’s choking, I e-mailed the ENT. She is the one who performed Dear Son’s botox injections on January 22, 2008. She called me this morning however unfortunately, there aren’t any other meds to try and most likely the next step will be removal of his saliva glands and a Nissen. If that doesn’t work, a trach may be necessary however I hope that is not the case. We see her in clinic next month.
On a different note, one of the students from Big Academic Medical Center contacted me a few weeks back about conducting an interview for the college newspaper. She is a senior and has been reading the blog for over a year now. She states that she guessed it was the Big Academic Medical Center she attended based on the clues in the blog. She was doing a story on the Air Transport Team and since we have used there services several times over the last few years, she was interested in interviewing me. The story was supposed to print a week or so ago and she was going to send me a copy however I haven’t received it yet.
On another publishing note, my blog was published in a Big City newspaper. As you may recall, I was invited into the Blogburst Network in November of 2006. BlogBurst is the world’s largest blog syndication network.* Once you sign a contract, any of their publishers can view your blog and print your content. Recently, a Big City Newspaper published my blog in their on-line edition. You can see about it here. Ironically, it was the same post that I submitted to Newsweek’s “Your Turn” a few weeks ago.
But most of all, I’d like to thank you. It is your support that is always a pleasure to us. The comments are always so beautiful.
On a different note, one of the students from Big Academic Medical Center contacted me a few weeks back about conducting an interview for the college newspaper. She is a senior and has been reading the blog for over a year now. She states that she guessed it was the Big Academic Medical Center she attended based on the clues in the blog. She was doing a story on the Air Transport Team and since we have used there services several times over the last few years, she was interested in interviewing me. The story was supposed to print a week or so ago and she was going to send me a copy however I haven’t received it yet.
On another publishing note, my blog was published in a Big City newspaper. As you may recall, I was invited into the Blogburst Network in November of 2006. BlogBurst is the world’s largest blog syndication network.* Once you sign a contract, any of their publishers can view your blog and print your content. Recently, a Big City Newspaper published my blog in their on-line edition. You can see about it here. Ironically, it was the same post that I submitted to Newsweek’s “Your Turn” a few weeks ago.
But most of all, I’d like to thank you. It is your support that is always a pleasure to us. The comments are always so beautiful.
*Note: Pluck Corporation operates BlogBurst, and distributes the content to media sites and newspapers around the world. In 2006, Reuters formed a strategic alliance with Pluck Corporation, to syndicate third party blog content as part of Reuters news and information service. Under the terms of this agreement, Reuters will offer BlogBurst’s syndication service to thousands of its media customers worldwide including The Washington Post and the Gannett newspaper chains, among others.
Monday, March 17, 2008
Dear O'Son
Happy St. Patrick's Day!Dear O'Son is all ready for the holiday today. It took a while but I managed to get a smile out of him. Yay!
The last few days have been quite challenging. Dear Son started having more seizures lately and when I couldn't get them under control, I called the pediatric neurologist. The medicine change helped the seizures however his choking increased significantly at night (one of the side effects of the meds is increased drooling) due to the increase in saliva. This is compounded by the fact that he is not able to clear his airway very well. He's fairly weak and has great difficulty coughing to clear the airway; at best, he'll simply yell out to clear it. I have elevated his hospital bed as high as it will go however it still isn't enough to help much with the choking. As a result, he is choking most of the night on his saliva.
The botox injections we had on January 22nd peaked around the three week mark and were less effective as time went on. He was scheduled for a second injection on May 6th however it is clear he will not be able to make it until then. I had scheduled another appointment in April with the ENT to discuss possible next steps-removal of the saliva glands and a Nissen (he did not have the Nissen when his g-tube was installed in 2004). I suspect that is where he is headed based on the failure of the botox.
In the interim, I'll speak with the ENT today to see if perhaps there is another drying agent or medication that he could use to assist in the reduction of saliva.
Monday, March 10, 2008
Winning Ugly
I’ll admit Dear Son’s inability to process his food a few weeks back threw me for a loop. I know it shouldn’t, I mean, it’s not like he’s been eating or anything. It was just the realization of another milestone in his downward spiral was achieved, if you call it that. Kind of like walking downhill and then slipping on the ice and nearly falling. You get hurt trying to stop the fall and then you realize what could have happened.
It’s a little more fun on the other end, when they are doing things to get “to” a milestone. Like maybe standing for the first time, even in a stander, now that’s moving forward. But the whole tasting thing, and not being able to eat, was just a reminder that there were ugly days ahead.
I remember lying him down that night to hook up his feeding tube. The cat walked by and I thought of how odd it would be if the cat were hooked up to a feeding tube or had a g-tube. It would be weird and we just wouldn’t do it for a cat. But somehow, it seems like a pretty good idea for our kids. After all, it’s a stop gap method for them. I remember we did it because Dear Son was having difficulty taking his seizure meds. They were mixed with food and he had so many of them that it altered the taste of the food and he no longer wanted to eat the food. Once that happened, he’d have more seizures and eventually he needed to get the g-tube, which solved that issue. It wasn’t until the MRSA pneumonia that he went to g tube feeds.
This whole deterioration piece is not fun. The botox injections, that were to assist with the choking at night, peaked at around the three week mark. For the first three weeks, it was great. Dear Son slept well since he was no longer choking through the night. It never seemed to impact his drooling though. After the three week mark, things went downhill. There are some nights that he has a pretty tough time. He’ll yell out the entire night and be exhausted by morning. It’s not every night but it happens enough. I am back to elevating the bed every night again. True, there were benefits to the botox injections, such as he’s not choking as severely as he did before, and for that, I am thankful.
But I ask myself, after the whole tasting incident and the realization that he’ll never, ever eat again, what’s next. His paternal Grandmother says to me from time to time, “that there is nothing to look forward to.” She would go on and on saying how Dear Son has nothing to look forward to and then sometimes that we, his Dad and I, had nothing to look forward to. For the most part, I just listened and it never really bothered me because I was so excited just to have Dear Son around for another day. I know that might sound silly but I am so thankful that I get to spend all of these days with him and I know that’s a blessing. I am glad I got to see him mature into a man; I am happy that I saw him grow up. I absolutely love seeing him smile. It really makes my day. But his inability to do anything more than taste his food changed all that. I knew then that we were headed backward. There was no more going forward. Ever. And that’s when I realized that there wasn’t much more than ugly days ahead.
It’s getting a little harder for him to get through his day. I work hard in the morning to get him ready for school and to get him to smile. I try to do and say things to make him laugh. More often than not, I might be lucky to get a smile out of him. He seems exhausted. After school, is worse, in some respects. He gets off the bus and looks like he’s been beaten to a pulp in his wheelchair. There are no smiles, his head is down and he sometimes has slept on the bus. He does perk up once he’s inside, and he’s happy to sit in a rocker for thirty to forty five minutes, but most of the time, he sits in his rocker listening to his music with his head on the table. After that, I take him in to his bedroom and he falls asleep the minute he hits the mattress, like within a minute. He nap until dinner time and when he wakes up, I’ll start dinner, which is Pedia Sure in his bag. And that’s it. He sleeps until morning, yelling out for diaper changes, choking, seizures or simply for me to roll him over.
I don’t know what more I can do for him. I just wish it were different for him. I mean, what’s next? What happens when he’s hospitalized for pneumonia, or something like that. What will I do? When is it enough? When do you stop? How do you stop? I just know I don’t want to be there. I don’t want to have to make any decisions. I want it to be natural. I don’t want to be put in any positions where I have to make any decisions. It’s just too hard. Because if I save him, I have nothing. He’s too tired and it’s physically exhausting to get through his day. I can see that. But if I lose him, I have nothing. What will I do? And how will I ever reconcile the fact that I made that choice? I can not do that either. Ever.
In football, when they fight hard to win, they call it, “winning ugly.” But in this case, I’d just call it “ugly.” Just plain, ugly.
It’s a little more fun on the other end, when they are doing things to get “to” a milestone. Like maybe standing for the first time, even in a stander, now that’s moving forward. But the whole tasting thing, and not being able to eat, was just a reminder that there were ugly days ahead.
I remember lying him down that night to hook up his feeding tube. The cat walked by and I thought of how odd it would be if the cat were hooked up to a feeding tube or had a g-tube. It would be weird and we just wouldn’t do it for a cat. But somehow, it seems like a pretty good idea for our kids. After all, it’s a stop gap method for them. I remember we did it because Dear Son was having difficulty taking his seizure meds. They were mixed with food and he had so many of them that it altered the taste of the food and he no longer wanted to eat the food. Once that happened, he’d have more seizures and eventually he needed to get the g-tube, which solved that issue. It wasn’t until the MRSA pneumonia that he went to g tube feeds.
This whole deterioration piece is not fun. The botox injections, that were to assist with the choking at night, peaked at around the three week mark. For the first three weeks, it was great. Dear Son slept well since he was no longer choking through the night. It never seemed to impact his drooling though. After the three week mark, things went downhill. There are some nights that he has a pretty tough time. He’ll yell out the entire night and be exhausted by morning. It’s not every night but it happens enough. I am back to elevating the bed every night again. True, there were benefits to the botox injections, such as he’s not choking as severely as he did before, and for that, I am thankful.
But I ask myself, after the whole tasting incident and the realization that he’ll never, ever eat again, what’s next. His paternal Grandmother says to me from time to time, “that there is nothing to look forward to.” She would go on and on saying how Dear Son has nothing to look forward to and then sometimes that we, his Dad and I, had nothing to look forward to. For the most part, I just listened and it never really bothered me because I was so excited just to have Dear Son around for another day. I know that might sound silly but I am so thankful that I get to spend all of these days with him and I know that’s a blessing. I am glad I got to see him mature into a man; I am happy that I saw him grow up. I absolutely love seeing him smile. It really makes my day. But his inability to do anything more than taste his food changed all that. I knew then that we were headed backward. There was no more going forward. Ever. And that’s when I realized that there wasn’t much more than ugly days ahead.
It’s getting a little harder for him to get through his day. I work hard in the morning to get him ready for school and to get him to smile. I try to do and say things to make him laugh. More often than not, I might be lucky to get a smile out of him. He seems exhausted. After school, is worse, in some respects. He gets off the bus and looks like he’s been beaten to a pulp in his wheelchair. There are no smiles, his head is down and he sometimes has slept on the bus. He does perk up once he’s inside, and he’s happy to sit in a rocker for thirty to forty five minutes, but most of the time, he sits in his rocker listening to his music with his head on the table. After that, I take him in to his bedroom and he falls asleep the minute he hits the mattress, like within a minute. He nap until dinner time and when he wakes up, I’ll start dinner, which is Pedia Sure in his bag. And that’s it. He sleeps until morning, yelling out for diaper changes, choking, seizures or simply for me to roll him over.
I don’t know what more I can do for him. I just wish it were different for him. I mean, what’s next? What happens when he’s hospitalized for pneumonia, or something like that. What will I do? When is it enough? When do you stop? How do you stop? I just know I don’t want to be there. I don’t want to have to make any decisions. I want it to be natural. I don’t want to be put in any positions where I have to make any decisions. It’s just too hard. Because if I save him, I have nothing. He’s too tired and it’s physically exhausting to get through his day. I can see that. But if I lose him, I have nothing. What will I do? And how will I ever reconcile the fact that I made that choice? I can not do that either. Ever.
In football, when they fight hard to win, they call it, “winning ugly.” But in this case, I’d just call it “ugly.” Just plain, ugly.
Sunday, February 17, 2008
When the Glass is Half Full
I remembered the face, the smile as broad as can be, the face of pure joy. It was the first time Dear Son was in a hot tub. It was as if Dear Son had died and gone to heaven. He never wanted to leave, he never wanted it to be over. He lay in the water, floating in his father’s arms, his face toward the sky, as the sun beamed down upon him. I had never seen him that relaxed or that happy as he was that day. But it was this face, that I remembered, when he smiled today. It was the same one that I saw when he was in the hot tub.
He had been vocalizing lately when I started his feeding this morning. The Pedia Sure pumping through the tubing like an electronic heartbeat, did not seem fast enough. By mid day, he started vocalizing again and looked up at me when I was in the kitchen. Dear Son, seated in his rocker at the dining room table, was listening to the radio. His head lie on a towel on the table to catch the drool that pooled near his mouth. Whenever I went near the kitchen, his head would come up off the table, as if to signal that he wanted something.
I took out his glass, a plastic cup with a squiggly straw built in the side, the only cup he had ever mastered. This cup, was the same one they taught him to use in elementary school. I had marveled over the fact that they were able to teach him to use this cup with the straw….I mean, how do you teach someone to suck up when they have very little oral motor control? You might be able to get him to suck a bit and then he never seemed to have enough suction to get the liquid all the way up through the straw. You’d have to tilt the cup so the liquid would be half way up so that when he’d suck, he’d get some liquid. I think they worked on this for at least a year and to this day, it remains as one of the greatest contributions the school system has ever made in his life.
I only have two of these cups remaining in my cabinet. The rest were tossed out and I saved another two in a cabinet I use less often, hoping I might need them again someday, knowing full well it will never be true. I suppose that would be called an emotional attachment to an object, something Professional Organizers like myself, should frown upon. If an item is not used, not loved or not needed, it should be tossed. Some rules are meant to be broken.
I pulled the glass out and filled it with some iced tea. He seems to like that on occasion, to wet his mouth. He doesn’t drink very often, as his swallowing ability has deteriorated, but he still enjoys it. I bring the glass over and sit next to him at the table. He smiles and I tilt the glass toward him. He falls to the right repeatedly and I try to support him while I tip the glass to help him get a sip. He chokes on the liquid then coughs a lot. We try again and when it happens a second time, he stops. I used to use a thickener however once he stopped eating and went to g-tube feeds, I never went back. The occasional sip, was just that, occasional.
I was taking lunch out of the oven when he looked at me again. I figured he was hungry so I quickly chopped up some food for him and mixed it with a vegetable and mashed potatoes, his favorite. His face lit up as I brought the plate over to the table. By now, he was smiling and laughing he was so excited. His face was exactly the same as it was in the hot tub, so many years ago. It was the face of pure joy. I put a tiny bit on the spoon and gave it to him. He was smiling and laughing so hard that I had to give him some verbal reminders to settle down so he could chew and not choke. There wasn’t any chewing required really, but I needed him to manage it slowly so he could swallow. Dear Son didn’t care and quickly took his face and tried to smash it into the food on his plate. That was his way of telling you to get the food in faster, to hurry up. That’s the way he ate dinner for as long as I can remember. He kept trying to smash his face in his food and I kept trying to stop him, since I didn’t want the food all over his face and all over the floor. He didn’t care. He kept smiling. I placed a small bit on the spoon again, thinking maybe I didn’t get enough in his mouth the first time, and gave it to him. Dear Son continued to smile but the food just sat in his mouth. I knew then, that he wasn’t able to chew it, eat it, or swallow it. Dear Son didn’t care though, he continued to smile and laugh, his eyes were lit up like it was the greatest day of his life. He stayed like that for at least ten minutes, the food never leaving his mouth. He never chewed it, he never swallowed it, he just tasted it. And it tasted good. I couldn’t get over how excited and happy he was just to get a taste. Not a bite, just a taste. A taste of real food.
Fifteen minutes later, the food came out of his mouth. I wiped it up and threw out the paper towel. I took the Hoyer Lift, attached the sling to it, raised him up and took him into his room. I lowered him onto his bed then removed the sling and hooked up his lunch. The two cans of Pedia Sure went into the bag and I turned on the pump. It would take one hour and forty five minutes for the 16 oz. to get into his belly to fill him up. But a taste, well a good taste lasted ten minutes.
As for me, I guess I’ll chalk it up to another lesson learned. Some people see the glass as half empty, some people see the glass as half full, and Dear Son, he’s sees it running over the top.
He had been vocalizing lately when I started his feeding this morning. The Pedia Sure pumping through the tubing like an electronic heartbeat, did not seem fast enough. By mid day, he started vocalizing again and looked up at me when I was in the kitchen. Dear Son, seated in his rocker at the dining room table, was listening to the radio. His head lie on a towel on the table to catch the drool that pooled near his mouth. Whenever I went near the kitchen, his head would come up off the table, as if to signal that he wanted something.
I took out his glass, a plastic cup with a squiggly straw built in the side, the only cup he had ever mastered. This cup, was the same one they taught him to use in elementary school. I had marveled over the fact that they were able to teach him to use this cup with the straw….I mean, how do you teach someone to suck up when they have very little oral motor control? You might be able to get him to suck a bit and then he never seemed to have enough suction to get the liquid all the way up through the straw. You’d have to tilt the cup so the liquid would be half way up so that when he’d suck, he’d get some liquid. I think they worked on this for at least a year and to this day, it remains as one of the greatest contributions the school system has ever made in his life.
I only have two of these cups remaining in my cabinet. The rest were tossed out and I saved another two in a cabinet I use less often, hoping I might need them again someday, knowing full well it will never be true. I suppose that would be called an emotional attachment to an object, something Professional Organizers like myself, should frown upon. If an item is not used, not loved or not needed, it should be tossed. Some rules are meant to be broken.
I pulled the glass out and filled it with some iced tea. He seems to like that on occasion, to wet his mouth. He doesn’t drink very often, as his swallowing ability has deteriorated, but he still enjoys it. I bring the glass over and sit next to him at the table. He smiles and I tilt the glass toward him. He falls to the right repeatedly and I try to support him while I tip the glass to help him get a sip. He chokes on the liquid then coughs a lot. We try again and when it happens a second time, he stops. I used to use a thickener however once he stopped eating and went to g-tube feeds, I never went back. The occasional sip, was just that, occasional.
I was taking lunch out of the oven when he looked at me again. I figured he was hungry so I quickly chopped up some food for him and mixed it with a vegetable and mashed potatoes, his favorite. His face lit up as I brought the plate over to the table. By now, he was smiling and laughing he was so excited. His face was exactly the same as it was in the hot tub, so many years ago. It was the face of pure joy. I put a tiny bit on the spoon and gave it to him. He was smiling and laughing so hard that I had to give him some verbal reminders to settle down so he could chew and not choke. There wasn’t any chewing required really, but I needed him to manage it slowly so he could swallow. Dear Son didn’t care and quickly took his face and tried to smash it into the food on his plate. That was his way of telling you to get the food in faster, to hurry up. That’s the way he ate dinner for as long as I can remember. He kept trying to smash his face in his food and I kept trying to stop him, since I didn’t want the food all over his face and all over the floor. He didn’t care. He kept smiling. I placed a small bit on the spoon again, thinking maybe I didn’t get enough in his mouth the first time, and gave it to him. Dear Son continued to smile but the food just sat in his mouth. I knew then, that he wasn’t able to chew it, eat it, or swallow it. Dear Son didn’t care though, he continued to smile and laugh, his eyes were lit up like it was the greatest day of his life. He stayed like that for at least ten minutes, the food never leaving his mouth. He never chewed it, he never swallowed it, he just tasted it. And it tasted good. I couldn’t get over how excited and happy he was just to get a taste. Not a bite, just a taste. A taste of real food.
Fifteen minutes later, the food came out of his mouth. I wiped it up and threw out the paper towel. I took the Hoyer Lift, attached the sling to it, raised him up and took him into his room. I lowered him onto his bed then removed the sling and hooked up his lunch. The two cans of Pedia Sure went into the bag and I turned on the pump. It would take one hour and forty five minutes for the 16 oz. to get into his belly to fill him up. But a taste, well a good taste lasted ten minutes.
As for me, I guess I’ll chalk it up to another lesson learned. Some people see the glass as half empty, some people see the glass as half full, and Dear Son, he’s sees it running over the top.
Wednesday, February 13, 2008
The Easy Button
It was 7:37 a.m. when I woke up. I had that panic when you know you overslept. I keep my alarm clock 35 minutes ahead so I was trying quickly to do the math. It was really 7:02 a.m. which meant the school bus was already outside, waiting for Dear Son. Dear Son, was sleeping soundly in his bed and there wasn’t any way we’d make the bus. It takes one hour to get him ready for the school bus and that’s if I pack his lunch bag and spare clothes the night before, which I always do. I went outside and informed them to go on.
Inside, I opened the phone book. There must be an easier way. My choices were to let Dear Son stay home from school or take him myself. Without a wheelchair van, I can barely manage getting him into the car. It takes everything I’ve got to lift him in there and if I am wrong, he’ll end up on the ground.
I opened the phonebook to see if there was some sort of wheelchair transport to take him to school once he was ready. The only listing was the local transit system bus. I called the phone number, but of course, we’d need to fill out a 12 page application, and an in-person interview prior to getting approved, and then I’d have to call a day in advance to get service and that’s if everything checked out.
I fell asleep on the sofa the night before. I woke up at 1:20 a.m. and quickly gave him his midnight meds. I usually give them at midnight on the dot but know I have an hour or so either way. Once he got his meds, and his diaper was changed, I stayed up and did some internet surfing and checked my e-mail. I went to bed at 2:30 a.m. and then couldn’t get to sleep until around 4 a.m. hence the oversleeping.
I decided to make the attempt to get him to school. I left my back brace on and got him ready and took him out to the car. I backed the car out of the garage, leaving enough room on the passenger side to get him in. The ground was icy making it risky. Hopefully, my footing would remain secure and his footing as well. Although he can’t weight bear, I can usually tilt the wheelchair totally forward and then swing him into the front passenger seat. I have to wedge my knee between his legs to do this otherwise his feet tangle when I swing him into the seat. I usually count to three before I lift him and ask him to help. If I am lucky, he’ll try to stiffen up for a second and I can make the transition. If he’s not able to do that, he’s on the ground. There is no in-between.
I got in him into the car and broke the wheelchair down into it’s parts. The wheels and the steel base they were attached to, went in the trunk and the rest of it in the back seat. His seat, the back of his wheelchair, the armrests, lunch box, backpack, sling and handlebars were all there. Sweating, I got into my car for the drive to school. In fifteen minutes, I could do this all over again. At least, I was 50% done. At school there would be help, but mainly once I got him out of the car since the male aide at school can’t lift him out of the car by himself. He’s just not used to it. To top it off, there was freezing rain coming down. Could it get any harder?
Once Dear Son was at school I went home to make some more phone calls. I learned that in addition to the transit bus, there was a bus in my county that would also take Dear Son places within a six county area for $1 per mile. I called the office, picked up an application and filled it out on the premises. To do this, we also needed to fill out another form, which required a State ID card.
I wasn’t worried about the State ID card. Our state offers an ID card but also offers a Disabled Card that identifies the person as disabled. It requires a physician’s signature, which I already had. I thought in lieu of a driver’s license, Dear Son should have an ID card, in case something happened to him. After all, he was sixteen now. And the Disabled ID card seemed perfect. If he were in an accident, they would know he was disabled. A few months back I printed the form and got the required signature so I thought I was set. Not.
To get this particular card, I needed that form but four other pieces of identification for Dear Son. One of which was Dear Son’s “written signature.” Well, Dear Son doesn’t have any use of his hands or arms so he doesn’t write. Not only that, he can’t hold a pen, hold a glass or hold anything in his hands. Nothing. There weren’t any other options listed for the disabled or those that can’t write, just a list of acceptable pieces of identification.
One of the other requirements was proof of residency. They wanted a utility bill in his name, or a lease or any of a list of bills in his name. Well, Dear Son lives with me, so we had none.
I attempted to call my local Secretary of State’s Office. Surely there was an oversight. They can’t expect that “all” disabled people can write or live on their own. The only number was a big city number and I waited on hold forever and finally hung up.
We’ll get a letter from the physician and hope that will suffice. Once that is done, we’ll get the Disabled ID card, then send in the form for the local wheelchair transit, and hopefully get approved. Once that’s done, we can go to the grocery store on a weekend or any time he’s home from school for a week’s vacation. Currently, we don’t go out of the house at all when he’s off, since it’s too risky and too hard to get him in/out of the car. I’d love to use it to go to the Arboretum this summer now that the cicadas from last summer are gone.
That was my morning. By noon, I had taken him to school, researched our options, drove across town and filled out forms, came home and made calls and did some internet searching for the Disabled ID card. I still had a long to do list of things to do for my business.
I sure wish there was an easy button. People need to think this stuff through more carefully. It shouldn’t have to be this hard to get a ride to school. I did what every other parent has done in their life, I overslept. I just wanted an easier way to get him to school.
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Note: I am sorry for the delay in posting. I had to take my pc in to the shop and didn't get this posted prior to taking it in.
On a different note, it's been about three weeks since Dear Son had the botox injections to decrease his saliva. It has worked amazingly well! His main issue was that the nighttime choking was so severe, I was afraid he would aspirate. Since the surgery, he hasn't had any episodes as severe as prior to the botox. While he still has days where he has difficulty controlling his saliva, and he still drools, his biggest issue is resolved. He is also sleeping much sounder and much better now that he's not choking through the night. I am sleeping much better too since I don't hear him choking and gasping for breath. Yay for botox!
Inside, I opened the phone book. There must be an easier way. My choices were to let Dear Son stay home from school or take him myself. Without a wheelchair van, I can barely manage getting him into the car. It takes everything I’ve got to lift him in there and if I am wrong, he’ll end up on the ground.
I opened the phonebook to see if there was some sort of wheelchair transport to take him to school once he was ready. The only listing was the local transit system bus. I called the phone number, but of course, we’d need to fill out a 12 page application, and an in-person interview prior to getting approved, and then I’d have to call a day in advance to get service and that’s if everything checked out.
I fell asleep on the sofa the night before. I woke up at 1:20 a.m. and quickly gave him his midnight meds. I usually give them at midnight on the dot but know I have an hour or so either way. Once he got his meds, and his diaper was changed, I stayed up and did some internet surfing and checked my e-mail. I went to bed at 2:30 a.m. and then couldn’t get to sleep until around 4 a.m. hence the oversleeping.
I decided to make the attempt to get him to school. I left my back brace on and got him ready and took him out to the car. I backed the car out of the garage, leaving enough room on the passenger side to get him in. The ground was icy making it risky. Hopefully, my footing would remain secure and his footing as well. Although he can’t weight bear, I can usually tilt the wheelchair totally forward and then swing him into the front passenger seat. I have to wedge my knee between his legs to do this otherwise his feet tangle when I swing him into the seat. I usually count to three before I lift him and ask him to help. If I am lucky, he’ll try to stiffen up for a second and I can make the transition. If he’s not able to do that, he’s on the ground. There is no in-between.
I got in him into the car and broke the wheelchair down into it’s parts. The wheels and the steel base they were attached to, went in the trunk and the rest of it in the back seat. His seat, the back of his wheelchair, the armrests, lunch box, backpack, sling and handlebars were all there. Sweating, I got into my car for the drive to school. In fifteen minutes, I could do this all over again. At least, I was 50% done. At school there would be help, but mainly once I got him out of the car since the male aide at school can’t lift him out of the car by himself. He’s just not used to it. To top it off, there was freezing rain coming down. Could it get any harder?
Once Dear Son was at school I went home to make some more phone calls. I learned that in addition to the transit bus, there was a bus in my county that would also take Dear Son places within a six county area for $1 per mile. I called the office, picked up an application and filled it out on the premises. To do this, we also needed to fill out another form, which required a State ID card.
I wasn’t worried about the State ID card. Our state offers an ID card but also offers a Disabled Card that identifies the person as disabled. It requires a physician’s signature, which I already had. I thought in lieu of a driver’s license, Dear Son should have an ID card, in case something happened to him. After all, he was sixteen now. And the Disabled ID card seemed perfect. If he were in an accident, they would know he was disabled. A few months back I printed the form and got the required signature so I thought I was set. Not.
To get this particular card, I needed that form but four other pieces of identification for Dear Son. One of which was Dear Son’s “written signature.” Well, Dear Son doesn’t have any use of his hands or arms so he doesn’t write. Not only that, he can’t hold a pen, hold a glass or hold anything in his hands. Nothing. There weren’t any other options listed for the disabled or those that can’t write, just a list of acceptable pieces of identification.
One of the other requirements was proof of residency. They wanted a utility bill in his name, or a lease or any of a list of bills in his name. Well, Dear Son lives with me, so we had none.
I attempted to call my local Secretary of State’s Office. Surely there was an oversight. They can’t expect that “all” disabled people can write or live on their own. The only number was a big city number and I waited on hold forever and finally hung up.
We’ll get a letter from the physician and hope that will suffice. Once that is done, we’ll get the Disabled ID card, then send in the form for the local wheelchair transit, and hopefully get approved. Once that’s done, we can go to the grocery store on a weekend or any time he’s home from school for a week’s vacation. Currently, we don’t go out of the house at all when he’s off, since it’s too risky and too hard to get him in/out of the car. I’d love to use it to go to the Arboretum this summer now that the cicadas from last summer are gone.
That was my morning. By noon, I had taken him to school, researched our options, drove across town and filled out forms, came home and made calls and did some internet searching for the Disabled ID card. I still had a long to do list of things to do for my business.
I sure wish there was an easy button. People need to think this stuff through more carefully. It shouldn’t have to be this hard to get a ride to school. I did what every other parent has done in their life, I overslept. I just wanted an easier way to get him to school.
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Note: I am sorry for the delay in posting. I had to take my pc in to the shop and didn't get this posted prior to taking it in.
On a different note, it's been about three weeks since Dear Son had the botox injections to decrease his saliva. It has worked amazingly well! His main issue was that the nighttime choking was so severe, I was afraid he would aspirate. Since the surgery, he hasn't had any episodes as severe as prior to the botox. While he still has days where he has difficulty controlling his saliva, and he still drools, his biggest issue is resolved. He is also sleeping much sounder and much better now that he's not choking through the night. I am sleeping much better too since I don't hear him choking and gasping for breath. Yay for botox!
Thursday, January 31, 2008
Still Life: The Portrait of a Child
It started with a picture, on Dad’s pc, of Dear Son sitting with his paternal Grandma. His face, smiling and full of life, was in drastic contrast to the teenager he had become. Gone was the excitement, gone was the energy and gone was the little boy. We hadn’t noticed how much Dear Son had changed until we saw that photo. The photo, reminded us of Dear Son’s younger days, walking on his knees into the kitchen, to let me know he was hungry and it was time to eat. I loved those days. I always felt it was important to acknowledge Dear Son’s communication efforts and that was how he did that. It wasn’t enough just to feed him at normal mealtimes, but to give him some food or a drink when he wanted. That was an accomplishment.
We talked about the picture and then let it be. From time to time over the past few weeks, the photo would surface and his Dad might mention how he wished he could do those things again. His paternal Grandma, would talk like that as well. This was a different position for her, after drilling me for years with the same question, “When is he going to be normal?” She asked me that for the first ten years of his life. I let it go most of the time, not wanting to state the obvious in full earshot of Dear Son, but on occasion, I’d tell her, “he’s never going to be normal.” At those times, my feelings would be hurt. There wasn’t any malice to her statements, but rather, it was more or less wishful thinking on her part, having never been around a child as disabled as Dear Son. Now she says, “I wish he could walk on his knees again” or she’ll say, “it would be great if he could do “x” like he used to” and then she trails off. The change from the question, was just another indication, that life for him was different and everyone was beginning to notice.
Dear Son hasn’t been able to stand since 2004. He had the g-tube implanted that year for medication only and there were some issues after that. A surgical nurse had put in the wrong size tube and kept trying to adjust it for months. That error, compounded itself and the too large feeding tube blocked the stomach opening which led to months of vomiting and missed days at school culminating in a 32 day hospitalization where the error was discovered. That wasn’t until he had lost over 10% of his bodyweight in a month and he had grown quite weak from the months of vomiting. He never regained his ability to stand again.
As time has passed, his body continued to fail him and he needed more support. We got a larger wheelchair, a new hospital bed, the hoyer lift, a hydrolic bath chair and switched to g-tube feedings exclusively. It seems almost that his physical abilities seemed to have diminished in direct proportion to his vertical growth, although we know that is not the sole or primary reason for his failures. I am also used to helping him more. Helping him roll over at night was just the beginning. First, it was just a roll and now I am lifting his hips up off the bed to complete the roll followed by lifting his head off the pillow and his shoulders to position him just right. You don’t notice those things really. They sneak up on you.
It wasn’t until I was talking to a new sitter this week that I became uncomfortable with some of the changes. The sitter, an aide in his classroom, is also his designated bus aide. She rides to school with him every morning and evening, in case of medical issues. I hired her to babysit this Saturday evening, since I am going out for the evening; I have been invited to a black tie affair for a non-profit fundraiser that benefits Special Needs children. This will be the first time she has cared for him in our home and I was telling her what to expect. It was then that I realized his life isn’t quite the same. You get used to doing things a certain way, a way that helps Dear Son and then, when you have outside eyes looking at it, it feels odd, almost like you have to defend your behavior, since it’s so out of the ordinary.
I was explaining that when she arrived on Saturday, he would be in bed. He goes to bed around 5 p.m. which is when I hook up the feeding tube for his dinner. Approximately fifteen minutes after that, I give him his seizure meds. He’s on quite a bit of meds and most knock him out pretty quickly, meaning he falls asleep. Once he gets the meds, it’s nearly impossible to move him and it’s just not safe, hence I put him in his bed at that time. He typically will sleep until the next morning, waking up for diaper changes and drifting in and out of sleep. He likes to listen to his iPOD while he gets dinner and sometimes I have the t.v. on but the mute button pressed so he has something to watch. Certainly, he’s not asleep 100% of the time from 5 p.m. on, but yet, it’s different. While I still need to change him, give him his midnight meds and roll him over every two hours or so, it’s our reality. But explaining that to an outsider, is well, different.
I guess I was really stuck by the contrast the other day, when I got him off the school bus. His head was lying on the right side of his chest, and his body was positioned in his wheelchair. There was no movement of any kind and if you didn’t know any better, you may have thought he was beaten up on the bus and left for well, you know. The inside bus aide* moved his arms and placed them back on his arm rests so he could maneuver him off the bus. Dear Son’s arms, don’t work very well. He has no use of his hands or arms so when they fall off the arm rests, they have to put them back on so they don’t get caught in the doorway as they roll the wheelchair onto the ramp. I joked to the bus driver and said it looked like Dear Son was beaten up on the bus, given his condition. Dear Son never looked up. He was just tired. Tired from a day at school. As I rolled him off the ramp, I kissed his head and rubbed his shoulder; I told him I was glad he was home.
The days take a lot out of him now. Just getting through the day is a major accomplishment. After he gets off the school bus, I take him in the house and use the Hoyer lift to get him out of the wheelchair and into the rocker. From there, he likes to lie his head on the dining room table and listen to his Christmas House. He used to look out the window but he can’t sit up well enough to do that anymore.
I glanced at the picture again and thought about him as his head lie on the table. The picture brought back memories of his spirit, his excitement and his wonderful smile. It’s kind of like aging, when you look at a picture of someone when they are younger and then you see them twenty years later as a senior citizen, with lines on their face that tell the story of how they lived their life. You see the smile lines around their eyes or maybe you see the frown lines on their head, or you see the lines above their lips to indicate they were a smoker. But what do you see when you look at the face of a child’s picture, of kids like Dear Son? You see the life they had. But not who they were allowed to become.
*****************
Note:*There are three employees on the bus- a bus driver, an inside bus aide who does the tie downs for the wheelchair to the floor for safety, and then his female bus aide who rides the bus for medical issues.
We talked about the picture and then let it be. From time to time over the past few weeks, the photo would surface and his Dad might mention how he wished he could do those things again. His paternal Grandma, would talk like that as well. This was a different position for her, after drilling me for years with the same question, “When is he going to be normal?” She asked me that for the first ten years of his life. I let it go most of the time, not wanting to state the obvious in full earshot of Dear Son, but on occasion, I’d tell her, “he’s never going to be normal.” At those times, my feelings would be hurt. There wasn’t any malice to her statements, but rather, it was more or less wishful thinking on her part, having never been around a child as disabled as Dear Son. Now she says, “I wish he could walk on his knees again” or she’ll say, “it would be great if he could do “x” like he used to” and then she trails off. The change from the question, was just another indication, that life for him was different and everyone was beginning to notice.
Dear Son hasn’t been able to stand since 2004. He had the g-tube implanted that year for medication only and there were some issues after that. A surgical nurse had put in the wrong size tube and kept trying to adjust it for months. That error, compounded itself and the too large feeding tube blocked the stomach opening which led to months of vomiting and missed days at school culminating in a 32 day hospitalization where the error was discovered. That wasn’t until he had lost over 10% of his bodyweight in a month and he had grown quite weak from the months of vomiting. He never regained his ability to stand again.
As time has passed, his body continued to fail him and he needed more support. We got a larger wheelchair, a new hospital bed, the hoyer lift, a hydrolic bath chair and switched to g-tube feedings exclusively. It seems almost that his physical abilities seemed to have diminished in direct proportion to his vertical growth, although we know that is not the sole or primary reason for his failures. I am also used to helping him more. Helping him roll over at night was just the beginning. First, it was just a roll and now I am lifting his hips up off the bed to complete the roll followed by lifting his head off the pillow and his shoulders to position him just right. You don’t notice those things really. They sneak up on you.
It wasn’t until I was talking to a new sitter this week that I became uncomfortable with some of the changes. The sitter, an aide in his classroom, is also his designated bus aide. She rides to school with him every morning and evening, in case of medical issues. I hired her to babysit this Saturday evening, since I am going out for the evening; I have been invited to a black tie affair for a non-profit fundraiser that benefits Special Needs children. This will be the first time she has cared for him in our home and I was telling her what to expect. It was then that I realized his life isn’t quite the same. You get used to doing things a certain way, a way that helps Dear Son and then, when you have outside eyes looking at it, it feels odd, almost like you have to defend your behavior, since it’s so out of the ordinary.
I was explaining that when she arrived on Saturday, he would be in bed. He goes to bed around 5 p.m. which is when I hook up the feeding tube for his dinner. Approximately fifteen minutes after that, I give him his seizure meds. He’s on quite a bit of meds and most knock him out pretty quickly, meaning he falls asleep. Once he gets the meds, it’s nearly impossible to move him and it’s just not safe, hence I put him in his bed at that time. He typically will sleep until the next morning, waking up for diaper changes and drifting in and out of sleep. He likes to listen to his iPOD while he gets dinner and sometimes I have the t.v. on but the mute button pressed so he has something to watch. Certainly, he’s not asleep 100% of the time from 5 p.m. on, but yet, it’s different. While I still need to change him, give him his midnight meds and roll him over every two hours or so, it’s our reality. But explaining that to an outsider, is well, different.
I guess I was really stuck by the contrast the other day, when I got him off the school bus. His head was lying on the right side of his chest, and his body was positioned in his wheelchair. There was no movement of any kind and if you didn’t know any better, you may have thought he was beaten up on the bus and left for well, you know. The inside bus aide* moved his arms and placed them back on his arm rests so he could maneuver him off the bus. Dear Son’s arms, don’t work very well. He has no use of his hands or arms so when they fall off the arm rests, they have to put them back on so they don’t get caught in the doorway as they roll the wheelchair onto the ramp. I joked to the bus driver and said it looked like Dear Son was beaten up on the bus, given his condition. Dear Son never looked up. He was just tired. Tired from a day at school. As I rolled him off the ramp, I kissed his head and rubbed his shoulder; I told him I was glad he was home.
The days take a lot out of him now. Just getting through the day is a major accomplishment. After he gets off the school bus, I take him in the house and use the Hoyer lift to get him out of the wheelchair and into the rocker. From there, he likes to lie his head on the dining room table and listen to his Christmas House. He used to look out the window but he can’t sit up well enough to do that anymore.
I glanced at the picture again and thought about him as his head lie on the table. The picture brought back memories of his spirit, his excitement and his wonderful smile. It’s kind of like aging, when you look at a picture of someone when they are younger and then you see them twenty years later as a senior citizen, with lines on their face that tell the story of how they lived their life. You see the smile lines around their eyes or maybe you see the frown lines on their head, or you see the lines above their lips to indicate they were a smoker. But what do you see when you look at the face of a child’s picture, of kids like Dear Son? You see the life they had. But not who they were allowed to become.
*****************
Note:*There are three employees on the bus- a bus driver, an inside bus aide who does the tie downs for the wheelchair to the floor for safety, and then his female bus aide who rides the bus for medical issues.
Tuesday, January 22, 2008
Great Day
Dear Son had his botox injections this morning despite my late start. We were scheduled to be there by 6:30 a.m. which means we needed to leave by 5 a.m. or so to be on time. That means a 3:30 a.m. wake up time for me which did not happen. I am not much of a morning person by any stretch of the imagination. I do try to help myself by setting my alarm clock 35 minutes ahead of schedule to help me out. It's not so much getting up, it's really being somewhere that early, after being up all night, which is what I don't enjoy. I managed to get up around 4:30 or so which meant we were a little late as we arrived at 6:45 a.m.. Dear Son's Dad helped us and did the driving so that was great. The radiologist was late as well due to the snow we had this morning and his 7:30 surgery did not start until after 9 a.m. due to the radiologist delay. The roads were a bit messy so I was fine with that.
The surgery went great. Our surgeon was someone whom I had never met. Our normal ENT is just starting to do the botox injections however this surgeon has done them for some time. She is also married to the doc who installed Dear Son's g-tube a few years back. She is a very cheerful young woman and a pleasure to work with. As a parent, it is really nice when you have physicians who love what they do. The surgeons who really love surgery always stand out in my mind because they are just so happy on surgery days. It's like an extra bonus for me. We get the surgery and all that good energy to boot.
Dear Son received 45 IUs into his parotid glands and another 20 IUs into his submandibular glands. The botox injections should help decrease drooling and help him manage his saliva at night. I should see some results within five to seven days.
We left the hospital and got home around 12:30 p.m. or so. Dear Son was tired so he slept the rest of the day. I managed to get four hours of uninterupted sleep this afternoon so I am feeling like a million bucks. In addition, I managed to get a few medical claims resolved to boot.
Dear Son is able to return to school tomorrow and I am back to work the rest of this week. Thanks to Dear Son's Dad today who was a great help for the surgery. We are not able to complete any office visits or surgical visits any more without his assistance so it's great that I have someone who can help me with all of this.
Tonight I am going to relax with my virtual champagne (thanks to Island Baby-see comment on last post) and check out some kitty blogs. I have to see what Poppy Q is up to and see what pretty new dresses Ms. Daisy, the Curly Cat (or Curly Gurly Cat as I like to refer to her) is up to.
The surgery went great. Our surgeon was someone whom I had never met. Our normal ENT is just starting to do the botox injections however this surgeon has done them for some time. She is also married to the doc who installed Dear Son's g-tube a few years back. She is a very cheerful young woman and a pleasure to work with. As a parent, it is really nice when you have physicians who love what they do. The surgeons who really love surgery always stand out in my mind because they are just so happy on surgery days. It's like an extra bonus for me. We get the surgery and all that good energy to boot.
Dear Son received 45 IUs into his parotid glands and another 20 IUs into his submandibular glands. The botox injections should help decrease drooling and help him manage his saliva at night. I should see some results within five to seven days.
We left the hospital and got home around 12:30 p.m. or so. Dear Son was tired so he slept the rest of the day. I managed to get four hours of uninterupted sleep this afternoon so I am feeling like a million bucks. In addition, I managed to get a few medical claims resolved to boot.
Dear Son is able to return to school tomorrow and I am back to work the rest of this week. Thanks to Dear Son's Dad today who was a great help for the surgery. We are not able to complete any office visits or surgical visits any more without his assistance so it's great that I have someone who can help me with all of this.
Tonight I am going to relax with my virtual champagne (thanks to Island Baby-see comment on last post) and check out some kitty blogs. I have to see what Poppy Q is up to and see what pretty new dresses Ms. Daisy, the Curly Cat (or Curly Gurly Cat as I like to refer to her) is up to.
Monday, January 21, 2008
Long Days
Sorry for the long delay between posts but I've been pretty tired. I am a bit surprised at how exhausting twenty four hour a day care for Dear Son is now that he is so much taller and larger overall. The Christmas break was two weeks long and was quite a bit to handle. During that time, he got backed up and once I realized it, I was able to increase his Miralax to "assist" him. It took a while but once it kicked in, I was one busy mother. I did nothing but bowel movement diaper changes for several days straight. I thought he was finished however it would take another week before he was back to normal. Luckily, I was able to avoid a hospital visit. It's pretty easy for these kids when they don't move around as much to get backed up. Dear Son is on Miralax all the time due to his motility issues that are related to his gene mutation.
Once he went back to school, there were more issues with seizures. One of his meds was increased however I am not certain that it's eliminated them; it took over a week before I started seeing enough of a difference. Typically, it helps fairly quickly. He still has some nights that he up quite a bit.
He had half days of school on Thursday and Friday. On Friday, he managed to fall out of the rocker but luckily wasn't hurt. I was sitting only a foot from him but I wasn't able to catch him. Once he fell on the carpet, I was unable to get him up so I had to call his Dad at work. His Dad, works only fifteen minutes from our apartment so he was able to come and lift him into the chair.
He continued to have issues on Saturday and Sunday and was up at least once every hour last night. He kept crying out which is unusual for him. I tried turning him over and finally started using his Vagus Nerve Stimulator. I am guessing they were seizures because the VNS seemed to help. In addition to being so tired, it's also getting physically harder because everything requires so much more effort. Turning him at night requires lifting his hips off the bed as well as rolling him over. Positioning him in the sling can be difficult on days when he has no tone because I can't keep his body somewhat straight for lifting. On the days that he is out of school, there is a lot of lifting to get him in the Hoyer Lift, then the rocking chair, the repeated diaper changes which require that I move him yet again and then all of the times I have to straighten him up since he can't sustain the sitting positon. That's nearly five days of care without a break.
This morning, he was fussing so I started his food early and got the seizure meds in him. After that, he finally fell asleep for a few hours and so did I. Once he was up, he was unable to sustain a sitting position in his rocker despite repeated attempts. It was a frustrating day for both of us since I felt bad he couldn't sit up at all. All he wanted was to listen to his music on the dining room table. He has this Christmas House that he loves to listen to. He sits in the rocker at the table and lays his head on the table to watch it. Sometimes, he's able to lean back and just rock but most of the time he falls to his right side. It's a pretty boring day for him to lie in his bed all day. I moved him to the upholstered chair which requires less work for him however after a few minutes he wants to try the rocking chair again which he is unable to do.
He continues to choke on his saliva however I am excited because tomorrow he is scheduled for botox injections. The botox injections should help manage that issue. We have waited fourteen months to get these. Apparently, there have been some issues with finding a radiologist. We are scheduled to be there at 6:30 a.m. so we'll have to get up early. I told Dear Son that we were going to the hospital tomorrow to get something to help his choking. I said they have something that works great for kids and the best part was that he didn't have to stay overnight. He starting smiling so I know he was excited. (You can read more about the botox injections here and here.)
That's all for now. Our lives can be pretty boring at times as this is what we do. Caregiving isn't very glamorous but there is something to be said for being together and being able to help someone. Sometimes, when things are hard, it's just nice to have someone to go through life with; I am lucky that Dear Son and I can do this together. He's a great kid and I wish it were different for him.
Once he went back to school, there were more issues with seizures. One of his meds was increased however I am not certain that it's eliminated them; it took over a week before I started seeing enough of a difference. Typically, it helps fairly quickly. He still has some nights that he up quite a bit.
He had half days of school on Thursday and Friday. On Friday, he managed to fall out of the rocker but luckily wasn't hurt. I was sitting only a foot from him but I wasn't able to catch him. Once he fell on the carpet, I was unable to get him up so I had to call his Dad at work. His Dad, works only fifteen minutes from our apartment so he was able to come and lift him into the chair.
He continued to have issues on Saturday and Sunday and was up at least once every hour last night. He kept crying out which is unusual for him. I tried turning him over and finally started using his Vagus Nerve Stimulator. I am guessing they were seizures because the VNS seemed to help. In addition to being so tired, it's also getting physically harder because everything requires so much more effort. Turning him at night requires lifting his hips off the bed as well as rolling him over. Positioning him in the sling can be difficult on days when he has no tone because I can't keep his body somewhat straight for lifting. On the days that he is out of school, there is a lot of lifting to get him in the Hoyer Lift, then the rocking chair, the repeated diaper changes which require that I move him yet again and then all of the times I have to straighten him up since he can't sustain the sitting positon. That's nearly five days of care without a break.
This morning, he was fussing so I started his food early and got the seizure meds in him. After that, he finally fell asleep for a few hours and so did I. Once he was up, he was unable to sustain a sitting position in his rocker despite repeated attempts. It was a frustrating day for both of us since I felt bad he couldn't sit up at all. All he wanted was to listen to his music on the dining room table. He has this Christmas House that he loves to listen to. He sits in the rocker at the table and lays his head on the table to watch it. Sometimes, he's able to lean back and just rock but most of the time he falls to his right side. It's a pretty boring day for him to lie in his bed all day. I moved him to the upholstered chair which requires less work for him however after a few minutes he wants to try the rocking chair again which he is unable to do.
He continues to choke on his saliva however I am excited because tomorrow he is scheduled for botox injections. The botox injections should help manage that issue. We have waited fourteen months to get these. Apparently, there have been some issues with finding a radiologist. We are scheduled to be there at 6:30 a.m. so we'll have to get up early. I told Dear Son that we were going to the hospital tomorrow to get something to help his choking. I said they have something that works great for kids and the best part was that he didn't have to stay overnight. He starting smiling so I know he was excited. (You can read more about the botox injections here and here.)
That's all for now. Our lives can be pretty boring at times as this is what we do. Caregiving isn't very glamorous but there is something to be said for being together and being able to help someone. Sometimes, when things are hard, it's just nice to have someone to go through life with; I am lucky that Dear Son and I can do this together. He's a great kid and I wish it were different for him.
Saturday, January 05, 2008
A Good Place
I got the call last night from a nursing friend of mine, that a woman at the Respite House had lost her disabled daughter. The daughter, now forty, died after the family put a DNR in place, refusing to vent her for a second time, after a serious bout with pneumonia. The daughter had been hospitalized since Thanksgiving. She told me of the agonizing decision this woman had to make, and how she wanted her entire family with her for support, because she didn’t feel like she could make the “right decision.” She kept saying that “she just wanted to be a mother”; she didn’t want to have to make this choice. I don’t know the woman personally, but only know of her, since she ran the Respite House prior to Dear Son staying there last year. I couldn’t help but feel great sadness for the woman, almost as if losing my own Dear Son, since I know full well, what the mother had been through.
The problem with severely disabled kids, is that you love them too much. You love them first for their beauty, next you love them because you are compassionate and the hand they were dealt doesn’t seem fair, and then you slowly begin to put yourself in their shoes. Once you do that, it’s all over because you will forever put yourself in their shoes in every situation. As a mother, you then try to make their life easier and pretty soon, you are joined at the hip. You know they can’t get through their day without you and you can’t get through your day without helping them. You essentially, put all of your eggs in one basket. You know that’s not smart, but you do it because as a mother, you can’t do it any other way.
With Dear Son, I see him struggle every day. I help him through all of his daily tasks, from rolling over at night, changing his diapers, giving him his meds four times a day to pushing the button every two minutes on our little Christmas House so he can hear the music. It’s one of the few things he enjoys so I can’t help but do it. I work part time so I can care for him, thus giving up a full time corporate job, all the money and the lifestyle that comes with it. But that is my choice.
You never mind though, because you know they are taken care of. You see what happens when they miss their medicine, so you make certain it doesn’t happen. Your biggest fear is what will happen when you die. Who will take care of them? How will they survive? Heck, you can’t find daycare when you are living how can you expect to find a place to care for them when you are not around?
And then, at some point, some of them die. You lose the one person you love the most. The up side is that you don’t have to worry about dying before them. The down side is that you can’t live without them. And therein lies the story. You never win. You never win with a disabled child because the up side and the down sides are the same. There is no up and there is no down side. It’s all just a continuum and at any given time you are at one spot or another. And that’s what makes it so hard. You spend your whole life trying to get to a good place. You want them to talk, you want them to walk. Those days don’t always come like you imagine. You want to wake up one day and have them walk. Instead, maybe they can stand in a walker one day. And then, a few months later, they can take two steps. And then, months go by and they can walk in the walker. At some point, maybe they can walk holding your hand for support. What was the day that they could walk? It all gets kind of muddied.
Then, as time goes on, they can’t walk anymore. First, they might be recovering from a hospital visit and they are weak. Then weeks turn into months and pretty soon, they diagnose them as having a progressive disease. Then there are the hospitalizations, the pneumonias, the ventilators and then the DNRs. Every time you turn around, you are trying to get to a “good place.”
I was thinking the other day, about Nancy Reagan and how difficult it must have been to watch her husband fade away. I thought about my own Dear Son and how different is it now, when I look at his pictures from a few years back and see all of the excitement, the emotion and how he could walk on his knees. That seems like a good place. I thought about now, how he can’t even stand up for a second so I can put him into the car or how he needs me to help him roll over at night. Maybe Dear Son having a progressive illness is God’s way to make it easier for me. If he takes Dear Son now, maybe I’ll flip out from loving him too much whereas if he takes him away slowly, I’ll know when the time comes, that he is where he should be, that he’s in a “good place.” Somehow, I doubt though, that it will feel very good. It’s like spending your whole life flying in a snowstorm and having to land the plane. Your choices are to land in a vast forest, a ravine or a swamp filled with quicksand. In the end, you are still looking for a good place. And maybe that’s why she said she “just wants to be a mother”; she’s tired of flying the plane and just needs a good place to land. In the end, the plane lands and you have a gaping whole in your heart, where you loved too much.
The problem with severely disabled kids, is that you love them too much. You love them first for their beauty, next you love them because you are compassionate and the hand they were dealt doesn’t seem fair, and then you slowly begin to put yourself in their shoes. Once you do that, it’s all over because you will forever put yourself in their shoes in every situation. As a mother, you then try to make their life easier and pretty soon, you are joined at the hip. You know they can’t get through their day without you and you can’t get through your day without helping them. You essentially, put all of your eggs in one basket. You know that’s not smart, but you do it because as a mother, you can’t do it any other way.
With Dear Son, I see him struggle every day. I help him through all of his daily tasks, from rolling over at night, changing his diapers, giving him his meds four times a day to pushing the button every two minutes on our little Christmas House so he can hear the music. It’s one of the few things he enjoys so I can’t help but do it. I work part time so I can care for him, thus giving up a full time corporate job, all the money and the lifestyle that comes with it. But that is my choice.
You never mind though, because you know they are taken care of. You see what happens when they miss their medicine, so you make certain it doesn’t happen. Your biggest fear is what will happen when you die. Who will take care of them? How will they survive? Heck, you can’t find daycare when you are living how can you expect to find a place to care for them when you are not around?
And then, at some point, some of them die. You lose the one person you love the most. The up side is that you don’t have to worry about dying before them. The down side is that you can’t live without them. And therein lies the story. You never win. You never win with a disabled child because the up side and the down sides are the same. There is no up and there is no down side. It’s all just a continuum and at any given time you are at one spot or another. And that’s what makes it so hard. You spend your whole life trying to get to a good place. You want them to talk, you want them to walk. Those days don’t always come like you imagine. You want to wake up one day and have them walk. Instead, maybe they can stand in a walker one day. And then, a few months later, they can take two steps. And then, months go by and they can walk in the walker. At some point, maybe they can walk holding your hand for support. What was the day that they could walk? It all gets kind of muddied.
Then, as time goes on, they can’t walk anymore. First, they might be recovering from a hospital visit and they are weak. Then weeks turn into months and pretty soon, they diagnose them as having a progressive disease. Then there are the hospitalizations, the pneumonias, the ventilators and then the DNRs. Every time you turn around, you are trying to get to a “good place.”
I was thinking the other day, about Nancy Reagan and how difficult it must have been to watch her husband fade away. I thought about my own Dear Son and how different is it now, when I look at his pictures from a few years back and see all of the excitement, the emotion and how he could walk on his knees. That seems like a good place. I thought about now, how he can’t even stand up for a second so I can put him into the car or how he needs me to help him roll over at night. Maybe Dear Son having a progressive illness is God’s way to make it easier for me. If he takes Dear Son now, maybe I’ll flip out from loving him too much whereas if he takes him away slowly, I’ll know when the time comes, that he is where he should be, that he’s in a “good place.” Somehow, I doubt though, that it will feel very good. It’s like spending your whole life flying in a snowstorm and having to land the plane. Your choices are to land in a vast forest, a ravine or a swamp filled with quicksand. In the end, you are still looking for a good place. And maybe that’s why she said she “just wants to be a mother”; she’s tired of flying the plane and just needs a good place to land. In the end, the plane lands and you have a gaping whole in your heart, where you loved too much.
Saturday, December 29, 2007
Christmas 2007
It's been a long week but I finally have a monitor and a new keyboard (more about that at the end.) Dear Son and I had a wonderful Christmas. Here are some pictures of our apartment.
This is our living room. I especially enjoy it at night when all of the candles in the sconces are lit.
This is one of my favorite pictures of Dear Son as a little boy sitting by our Christmas tree trying to get the lights off the tree. Wiggles seems to like it too.
This is my new Christmas tree this year. I purchased a 7 foot "slim" tree. It fits much better than the full size one I had last year and is a lot easier. I used the same decorations as last year though. I have collected many of these ornaments over the years. My favorite ones are the blown glass ones. When I lived in my house, I had a maple staircase. I used to drape fresh garland and a gold and silver chiffon type ribbon through the lighted garland and hang all of my glass and crystal ornaments on the garland. The lights would shine through the glass and was quite beautiful.
This is our dining room. Dear Son loves to sit near the table in his rocking chair, lean his head on the table and listen to his Christmas music boxes.
This is the armoire in my dining room. I used to have the armoire in my living room to hide the t.v. however when I moved to my apartment, I ended up using the armoire as a pantry since they I don't have one.
This is Dear Son sitting in his new rocker in his red/white shorts and hat. I bought him this Christmas hat and he loved wearing it. This was Christmas Eve. If you look closely, you can see the sling for the Hoyer Lift that he's sitting on. If you look at the top of the rocker, you can see where the sling hooks fit over the top keeping the sling in place while he sits. This makes it easier to get him out of the rocker since the sling no longer falls behind him when he's sitting.
While Dear Son loved to wear his Santa hat, our cat Wiggles, not so much. When Dear Son gets tired and starts to fall over in the rocker, I set him in the upholstered chair. While he was sitting there, the cat came and sat near him. I decided to put the Santa hat on the cat and take a picture of both of them. Dear Son was laughing however I couldn't seem to get one of him smiling. I was happy just to get a picture of both of them in their Santa hats.
We celebrated Christmas with my family the Sunday before Christmas Eve. On Christmas Day, I started Dear Son's feeding pump at five a.m. and allowed him to open one of his presents (actually I wrap them and open them up since he can't do it). I got him a carousel and he enjoyed listening to it while he got his Pedia Sure via the g tube. Our cat got some cool cat toys from Santa and I gave them to him at that time too. He loved batting his new toys around the bedroom and it made Dear Son laugh. Dear Son made me this present at school. The school sends home a present from him to me and he is always very proud of that. I told him we had to wait until Christmas to open it. After he got his carousel and the cat got his present, I opened this gift from him. We decided to hang it on his IV pole while he ate his breakfast. He was thrilled. WE opened the rest of the gifts after he got up. I got him mostly clothes (shirts, pj pants, pants and a new down winter coat). Dear Son is such a happy kid. He wakes up with a smile every day and Christmas morning was no different.
His absolute favorite gift was this iHOME iPOD charger that plays his iPOD. Prior to getting this, he'd listen to his music on the iPOD headphones however since he needs to lie on his side (he'll choke on his saliva if he lies on his back), the headphones would get drool on them and then malfunction. In addition, it just wasn't comfortable. With this, he can listen to his music while he eats via the g tube. Since it typically takes almost three hours to get his breakfast and dinner, it's nice to have some music to listen to while that is transpiring. His eyes light up every time he goes in his room and sees it on his nightstand. He just loves listening to his music.
This is my favorite gift although you can't really see it well in this picture. It's an illuminated keyboard by Saitek. The keys light up in one of three colors: blue, red or purple. The purple looks more like pink to me. Not only do the letters light up, but the keys are backlit and the sides of the keyboard light up as well. This is great because I frequently type in the dark (after Dear Son goes to bed) and I can be on the internet and not have to turn a light on. The reviews said the keyboard isn't bright enough however I have not found that to be the case. As you can also tell, my cat likes to sit with me while I am on the internet (maybe he likes looking at Poppy Q or Miss Daisy in her modeling outfits).On a different note, Dear Son has been having some good and bad days. Prior to Christmas, he was choking severely on his saliva. He seemed to do a little bit better on Christmas Eve and Christmas Day however yesterday he was unable to sit up in his rocker at all. He kept falling over and seemed to be having a lot more seizures. He was up most of the night last night and has been up a lot this week. I have this weekend off so his Dad was up a lot with him. I was able to sleep in today and then go out this evening for dinner with my friends. All in all, a wonderful holiday.
Tuesday, December 25, 2007
Merry Christmas
Sorry I haven't posted in a while. We had a winter storm on Saturday night and the high winds took out our power for 6.5 hours; more importantly, my pc monitor blew so I haven't had any pc access since then. I am going to try and get out and get a new monitor this weekend but it's difficult since I can't leave the house with Dear Son since it's too hard. (I am on a relative's pc now.)
I have several pictures to post and will try to get to them this weekend.
Wishing you all a Merry Christmas. Dear Son had a wonderful holiday and I'll tell you about it when I can.
Thank you.
I have several pictures to post and will try to get to them this weekend.
Wishing you all a Merry Christmas. Dear Son had a wonderful holiday and I'll tell you about it when I can.
Thank you.
Tuesday, December 18, 2007
Santa Wiggles
Since this week is so busy and I haven't had time to write, I thought I'd share some photos instead.Here are pictures of our cat in his new Santa hat. I know I shouldn't put one on him however I had a hard time resisting it in the store. He did not like it very much but did allow me to take a few pictures before I took it off. These will be the last cat pictures for a while.
Sunday, December 16, 2007
Climbing Trees
Dear Son gets a big kick out of our cat Wiggles. Wiggles likes to go into our tree and pretend he's an ornament. Sometimes, he likes to go in there and sit at the top of the tree to watch the animals outside, like our ducks, who come to the feeder, even in the snow. They used to fly south for the winter but not anymore.
Going into the tree.
Pretending he's an ornament.
Exiting the tree. 
Ducks in the snow.
Going into the tree.
Pretending he's an ornament.
Exiting the tree. Ducks in the snow.I am off to go Christmas shopping today. I bought a new Mr. Christmas carousel for Dear Son on Friday, along with a new 7 foot slim Christmas tree for our house. I'll try to post some pictures of the new tree this week (the photos above are last year's tree). I hope to get Dear Son some new clothes today.
Tuesday, December 11, 2007
2007 Christmas Wish List
It's hard to believe sixteen years have passed since this first Christmas in 1991 with Dear Son. As a follow up to last year's post, "Best Toys and Gifts for Special Needs Children", I thought I'd share our wish list for Christmas this year as well as follow up on a few items from last year.
Wooden Rocking Chair-This is a picture of the rocking chair I bought for Dear Son's birthday. When he was younger, I only purchased the solid wooden rockers, as I mentioned last year, becaue they are lighter and easier for him to maneuver. I purchased this rocker at the Cracker Barrel for $129.99 (I didn't eat there, just purchased the rocker.). It is a nice sturdy rocker with a tall back that supports Dear Son's head and also looks nice enough to sit in my living room/dining room. He loves this rocker. I found this rocker to be very well made and the rush back provides firm support for Dear Son.Homedics iSound Spa Max-This is essentially an iPOD docking station that charges the iPOD, has a radio, dual alarm, remote control and nature sounds. It also projects the time on the ceiling. Currently, Dear Son listens to his music on our iPOD however because he spends a lot of time lying down, his saliva frequently rolls out of his mouth and gets caught on the earbuds and then they don't work very well. I've tried other headsets which are larger but aren't as comfortable lying down. I decided that if he had this on his nightstand, he could listen to his country music and fall asleep, as well as listen to our local radio station that plays Christmas music. I wanted a remote control so I could shut the device off once he falls asleep and not disturb him by going over to the nightstand to do it. This gift was my idea however Dad checked out a few of these and decided to buy him this one.
Mr. Christmas Symphony Santa Surprise-I purchased this for Dear Son last year and he is still crazy about it this year. As a matter of fact, I can't keep enough "C" batteries in the house. He listens to this every day after school and on weekends. I usually set a towel on the table so he is more comfortable but I was trying to take a Christmas picture and he got distracted as soon as he saw this. He actually prefers this over television, the radio, his iPOD or anything else. I just wish that Mr. Christmas would have made an electrical cord so I could plug it into the wall and not have to buy as many batteries. Once I ran out of batteries, I had to pull out his all time favorite Christmas music box which was a Mr. Christmas Twas the Night Before Christmas House. It's a Christmas house where each window of the house lights up as the story is narrated. They don't sell them anymore and ours is on it's last leg since the power cord is not providing enough power any longer.
Clothes-It's not glamorous however as you can see from this picture, Dear Son has grown a lot this year and desperately needs more clothes. I purchased this shirt for him recently and it was a men's large and fit just fine. I will probably buy him pants and shirts for school and perhaps a down jacket for those really cold days. His current one is getting tight on him.Wheelchair Van-As much as I have avoided the dreaded "van" over the years, I would give anything to have a wheelchair accessible van that opens to the back so I could just wheel his chair in. If I had one, we could go a lot more places and it would be a lot easier to take him places. Currently, I am putting him in the front seat of my car and his legs are nearly touching the dashboard.
Diapers-They aren't glamourous but gosh, I would be thrilled to get a case of them. Dear Son goes through a lot of diapers, bed pads and wipes on a regular basis. The ones I'd like are from HDIS (1-800-2MY-HOME). They are the Tranquility All Through The Night Briefs and run around $120 for a case of 96. That would last him about 13 days so he need not quite three cases of these a month.
And the number one fantasy item we'd love to have this year, is the "Pleo." I saw it on Good Morning America one morning and Diane Sawyer was playing with it. Of course, they didn't make it easy since she never once mentioned the name. Amazon.com describes it as,
"With the Senario 22208 Pleo A Ugobe Life Form, you can expand your family with a pet from prehistoric times. The Pleo is a one-week-old dinosaur that will quickly grow to become one of the most fun and exciting members of your family. This amazing robotic marvel not only moves organically, explores its environment on its own, and interacts with you, but it also expresses emotions based on its life experiences."
Essentially, it's a dinosaur that acts like a pet. It comes up and cuddles with you and plays with you much like a pet. At $349.99, it's out of my price range this year. This would be the perfect toy for Dear Son since the pet comes to him as opposed to him trying to activate it. I think it would work but I don't know until I see it in person.
I wish I could ask Dear Son what he would like. I know that many of these things aren't very exciting but the truth of the matter is that these are the things we need the most. Either way, we'll still have a wonderful holiday because we will be together.
Sunday, December 02, 2007
Fish Hugs
The fish had been hovering for weeks at the top of the fishbowl, weak, and breathing heavily. I had purchased a beta fish for years now, one at a time. This one was different though. I went in to the pet store to purchase a large red beta fish and instead purchased the scrawny purple one. There were only a few left prior to the shipment, none of them red. The purple one was the smallest of the group but he was happy. He’d swim over by me when I was looking at the bowl and when I left the aisle to go home, without a fish, I couldn’t get him out of my mind and went back over the end of the aisle, where he seduced me into buying him, with his happiness.
I brought him home and placed him on the countertop near the sink, where I could see him when I’d wash dishes. He’d swim over to the side near me and I’d rub the fish bowl as if to give him a fish hug. He’d love it and then swim away. The other fish would always dart away as soon as I’d touch the bowl; this one did not.
Our cat would love to sit on the box next to fishbowl and watch him. It was an ornate silver box, velvet lined, to store things. I had purchased it many years ago to store remote controls, long before it was fashionable to do so. Our cat would sit there and try to knock off the plant on the top of the fishbowl to gain access to the beta fish. Seeing this would prompt a scolding from me while Dear Son erupted in laughter, over the cat getting a scolding. It was a nice balance.
Over Thanksgiving, the fish continued to hover near the top of the bowl. He had outlived the normal lifespan and I dreaded the loss of my fish and even worse, removal of the dead fish from the bowl. As he lay near the top, I continued to change the water in the bowl every week and continued to feed him. I wondered when and if I should stop as the fish was clearly suffering. I wondered which would be more humane. It was a $3 fish, so it shouldn’t require much thought, but the cost was never really a factor in doing what is right. After all, he could be replaced, but that wasn’t really the issue.
As he lay at the top of the bowl, I couldn’t help but think about Dear Son. I remembered when he was on the ventilator and wondering what would be proper. I remember conversations with the geneticist about the end of life and he almost had me convinced at one point, that the time to end things is when they are suffering, however I just could never do it. It didn’t seem right.
The days went on. The weather was cold and Dear Son was home for the Thanksgiving holiday. We’d be spending it here, after a family member got sick and was unable to host. Staying at home was always fine with me however the days were long with Dear Son and it made me uncomfortable not to be able to feed him a hot meal and even more uncomfortable to cook a turkey without giving him any. It always seemed mean to let him smell the food, but not allow him to eat. I’ve never been able to do that, at least on the holidays.
I started feeding him the day before Thanksgiving and made him his favorite meal. His eyes lit up as I prepared the meal and he began to rock very fast in his rocker, almost bursting from excitement. I pureed the meal up and fed it to him slowly. The liquid didn’t go as well and he choked a bit so I stopped the drink and continued to feed him. He was so happy. And so was I. I fed him again at dinner and then it was Thanksgiving Day. I fed him Pedia Sure for breakfast and then made our turkey dinner for lunch. It was a little bit different today though. I pureed the turkey, the sweet potatoes and some broccoli for him. I left him in his new rocking chair for lunch, since it was easier to leave him there instead of moving him to the wheelchair. In the rocker, I could turn it towards the table and the table height would be perfect. Soon into the meal, he began falling over to the right repeatedly. He could not sit up. I took my left arm and placed it around his shoulders, his head tipping back on the top of my arm. I fed him with my left hand and he quickly placed his right foot on top of mine beneath the table and his right hand on my lap. When he was a little boy, he always placed his foot on my lap as he fed, as a symbol of closeness. And now, over a year after his feedings by mouth have ended, he remembered the old routine. The cat, jumped up on the chair, to watch Dear Son feed. We have a glass topped table so the cat was visible beneath the glass. Dear Son laughed at that as he knew the cat would be hoping for some of his meal. The cat sitting on the chair would prompt a scolding from me, more like a reminder to not beg for Dear Son’s food. He didn’t really, but it made Dear Son laugh when I said it, as he loved the thought of anyone getting in trouble. The cat knew the game and he wagged his tail from side to side as I did it.
Dear Son loved the meal. He’d look me in the eye and then when I wasn’t getting the food in fast enough, he’d lean forward and smash his face into the potato mixture as if to tell me to “hurry up”. That’s what he wanted ever since he was little, to get the food in faster. I’d try to restrain him from smashing his face into the food but he always won out. I wasn’t sure if it wasn’t because I wasn’t getting it in fast enough or he simply wanted to feel the food against his face, since it had been so long.
As I fed him dinner, my arm around his shoulders, his head tilted back with his eyes gazing into mine, I couldn’t help but feel good. Although he was sixteen and I was feeding him like a baby, it just didn’t matter. I could feel the love and it was mutual. I was doing was I thought was right and it felt really good. Feeding him via the g-tube might be what he needs but it never feels quite right as a mother or as good as feeding him real food by mouth. There is something about nourishing your children, that is ingrained in your being, and the Pedia Sure doesn’t quite cut it. We finished our meals, and Dear Son looked up into my eyes and said, “I love you.” It was unintelligible as usual, but I knew what he meant. I gazed back into his eyes and said, “I love you too.” I knew then, that this would be the best Thanksgiving and one I would remember for a long time.
As I cleared the dishes, the fish hovered near the top of the tank. I went to bed that night and he looked worse, his color was more of a pale gray and his body hovered in an upside down “U”. His breathing was more labored than before, with large, almost gasping breaths. I rubbed my finger on the fishbowl giving him a long fish hug before going to bed.
I woke up the next morning and the fish was dead. I knew then that I had made the right decision, caring for him and letting nature take it’s course. I felt the same way with Dear Son, loving him and doing what is needed until the end. And for that, I am thankful. There is a saying that goes something like this, “If I were to give trade away all the things I have, for all of the things I want, I would be bankrupt, for all I need has already been given.”
........................
Note: Dear Son enjoyed lunch and dinner on Thanksgiving and then lunch the following day before going back to his normal routine. He had seizure issues for several days during this time and at one point was no longer able to sit up at all. Once the seizures got under control again, things improved. He is now doing much better.
Today, we are heading to a Christmas Party at the Respite House, where he stayed this summer. He absolutely loved the party last year and laughed the loudest of all of the kids in the room.
I brought him home and placed him on the countertop near the sink, where I could see him when I’d wash dishes. He’d swim over to the side near me and I’d rub the fish bowl as if to give him a fish hug. He’d love it and then swim away. The other fish would always dart away as soon as I’d touch the bowl; this one did not.
Our cat would love to sit on the box next to fishbowl and watch him. It was an ornate silver box, velvet lined, to store things. I had purchased it many years ago to store remote controls, long before it was fashionable to do so. Our cat would sit there and try to knock off the plant on the top of the fishbowl to gain access to the beta fish. Seeing this would prompt a scolding from me while Dear Son erupted in laughter, over the cat getting a scolding. It was a nice balance.
Over Thanksgiving, the fish continued to hover near the top of the bowl. He had outlived the normal lifespan and I dreaded the loss of my fish and even worse, removal of the dead fish from the bowl. As he lay near the top, I continued to change the water in the bowl every week and continued to feed him. I wondered when and if I should stop as the fish was clearly suffering. I wondered which would be more humane. It was a $3 fish, so it shouldn’t require much thought, but the cost was never really a factor in doing what is right. After all, he could be replaced, but that wasn’t really the issue.
As he lay at the top of the bowl, I couldn’t help but think about Dear Son. I remembered when he was on the ventilator and wondering what would be proper. I remember conversations with the geneticist about the end of life and he almost had me convinced at one point, that the time to end things is when they are suffering, however I just could never do it. It didn’t seem right.
The days went on. The weather was cold and Dear Son was home for the Thanksgiving holiday. We’d be spending it here, after a family member got sick and was unable to host. Staying at home was always fine with me however the days were long with Dear Son and it made me uncomfortable not to be able to feed him a hot meal and even more uncomfortable to cook a turkey without giving him any. It always seemed mean to let him smell the food, but not allow him to eat. I’ve never been able to do that, at least on the holidays.
I started feeding him the day before Thanksgiving and made him his favorite meal. His eyes lit up as I prepared the meal and he began to rock very fast in his rocker, almost bursting from excitement. I pureed the meal up and fed it to him slowly. The liquid didn’t go as well and he choked a bit so I stopped the drink and continued to feed him. He was so happy. And so was I. I fed him again at dinner and then it was Thanksgiving Day. I fed him Pedia Sure for breakfast and then made our turkey dinner for lunch. It was a little bit different today though. I pureed the turkey, the sweet potatoes and some broccoli for him. I left him in his new rocking chair for lunch, since it was easier to leave him there instead of moving him to the wheelchair. In the rocker, I could turn it towards the table and the table height would be perfect. Soon into the meal, he began falling over to the right repeatedly. He could not sit up. I took my left arm and placed it around his shoulders, his head tipping back on the top of my arm. I fed him with my left hand and he quickly placed his right foot on top of mine beneath the table and his right hand on my lap. When he was a little boy, he always placed his foot on my lap as he fed, as a symbol of closeness. And now, over a year after his feedings by mouth have ended, he remembered the old routine. The cat, jumped up on the chair, to watch Dear Son feed. We have a glass topped table so the cat was visible beneath the glass. Dear Son laughed at that as he knew the cat would be hoping for some of his meal. The cat sitting on the chair would prompt a scolding from me, more like a reminder to not beg for Dear Son’s food. He didn’t really, but it made Dear Son laugh when I said it, as he loved the thought of anyone getting in trouble. The cat knew the game and he wagged his tail from side to side as I did it.
Dear Son loved the meal. He’d look me in the eye and then when I wasn’t getting the food in fast enough, he’d lean forward and smash his face into the potato mixture as if to tell me to “hurry up”. That’s what he wanted ever since he was little, to get the food in faster. I’d try to restrain him from smashing his face into the food but he always won out. I wasn’t sure if it wasn’t because I wasn’t getting it in fast enough or he simply wanted to feel the food against his face, since it had been so long.
As I fed him dinner, my arm around his shoulders, his head tilted back with his eyes gazing into mine, I couldn’t help but feel good. Although he was sixteen and I was feeding him like a baby, it just didn’t matter. I could feel the love and it was mutual. I was doing was I thought was right and it felt really good. Feeding him via the g-tube might be what he needs but it never feels quite right as a mother or as good as feeding him real food by mouth. There is something about nourishing your children, that is ingrained in your being, and the Pedia Sure doesn’t quite cut it. We finished our meals, and Dear Son looked up into my eyes and said, “I love you.” It was unintelligible as usual, but I knew what he meant. I gazed back into his eyes and said, “I love you too.” I knew then, that this would be the best Thanksgiving and one I would remember for a long time.
As I cleared the dishes, the fish hovered near the top of the tank. I went to bed that night and he looked worse, his color was more of a pale gray and his body hovered in an upside down “U”. His breathing was more labored than before, with large, almost gasping breaths. I rubbed my finger on the fishbowl giving him a long fish hug before going to bed.
I woke up the next morning and the fish was dead. I knew then that I had made the right decision, caring for him and letting nature take it’s course. I felt the same way with Dear Son, loving him and doing what is needed until the end. And for that, I am thankful. There is a saying that goes something like this, “If I were to give trade away all the things I have, for all of the things I want, I would be bankrupt, for all I need has already been given.”
........................
Note: Dear Son enjoyed lunch and dinner on Thanksgiving and then lunch the following day before going back to his normal routine. He had seizure issues for several days during this time and at one point was no longer able to sit up at all. Once the seizures got under control again, things improved. He is now doing much better.
Today, we are heading to a Christmas Party at the Respite House, where he stayed this summer. He absolutely loved the party last year and laughed the loudest of all of the kids in the room.
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