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.

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.

*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.

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.

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.

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.

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!

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.

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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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

The Birthdays

We passed the high school kids as we walked along the walking trail, Dear Son and I. The high school kids, were standing on the second story porch, facing the golf course and walking trail. The homes are large. The porches are larger yet and offset their impeccably manicured yards. We saw the kids talking and horsing around, as one of them was obviously having a party of some kind. Kids Dear Son’s age, always get his attention. He stares at them when we pass by and sometimes he’ll yell out in what I think is an attempt to get their attention. They ignore him mostly, because he’s not one of them. Once in a while, someone on the trail might say “hi” to him, but most just pass him by as if he were invisible.

We were now heading home and passing them for a second time when they all gathered around one of the teenagers. They began singing, “Happy Birthday” when we stopped to listen. I turned Dear Son’s wheelchair around to face the kids while they sang. We were far enough away that it wasn’t a distraction in any way and besides that, we were just looking. I told him his birthday was coming up soon and it wouldn’t be long until the kids at school would be singing Happy Birthday to him. The song ended and we turned around and headed home.

The birthdays are different now. With every passing year, I become more thankful that they have arrived, more thankful that we somehow “beat the system” and got to spend more time with Dear Son. The birthdays, have gone from rites of passage, to more of, remembering all of the things he has been through and thankful that he has come out alive for now. It’s the kind of thinking that you have let’s say when your parents are older and they have had a long illness. You want to keep them around and you aren’t quite sure how many more years you will have with them.

But this should not be what you are thinking when they are turning sixteen. This was supposed to be the “big” birthday when they get their license and start driving. When you hold your breath and give them control of the car while you ride along as a passenger. As parents, I always knew who would be teaching Dear Son to drive. We never talked about it, but I knew it would be Dad. He is a Type B personality with a very calm demeanor; he’s a good driver so he would be a good choice to teach Dear Son. He has a way to make it not only pleasant but fun. Instead, the only change that happened this year is that we let Dear Son ride in the front seat of the car, because it’s easier to get him in there.

Imagine that, he’s almost sixteen and he can now ride in the front seat. He came home with his father from a weekend visit and I saw them turning into the driveway of our home and I didn’t recognize Dear Son at first because he was sitting in the front seat. It was as if it was something that was incomprehensible.

We also no longer wonder when or if he’s going to walk. That used to be the big thing. We’d wonder if he’d ever get to the point where he wouldn’t need the gait trainer any more and walk on his own. We got to the first part, a few years back. He never really was able to walk on his own. One year, he was able to walk when I held his arm tightly for support but other than that, that’s the best he ever did. For many years, we’d be looking forward, wondering what he’d be doing when he turned a certain age. Now we look back.

Other changes are remembering his laughter when he’s not home. This is the type of thing that you do when someone dies. You remember them and the things they enjoyed. You remember their essence. I think about that now when I remember things that make him laugh. When he’s at his Dad’s for the weekend, I’ll make my bed and the cat will come up on the bed and play in the sheets. Dear Son always laughs when this happens because he thinks the cat will get into trouble. The cat doesn’t get in trouble at all; instead he plays a bit, then flys out from the blankets and leaps off the bed and runs into the other room. Dear Son laughs when he does that. I think about him smiling and it bothers me that I even think about that. It’s like he’s already gone.

And then there is the loneliness. I really hate it when he spends the weekend at his Dad’s. Yes, it’s great getting to sleep the whole night through. It’s great being able to go out with my friends and have fun. It’s great being able to leave the house after four in the afternoon, since I don’t have to take him in the car and load the wheelchair in the trunk. But it’s not so great when I come home late at night. It’s just too quiet. I distinctly remember this feeling when I was a teenager myself. My father died of a massive heart attack when I was thirteen. My mother resumed dating a year or so after that and I’d come home often to an empty house. I hated that feeling of an empty house. I am reminded of that when I look at Dear Son’s bed and there is no one there. I have trouble sleeping at night because I don’t hear him breathing. Sometimes, I’ll leave the radio on all night so I can hear something. With kids like this, they become a big part of your life because they can’t function without you. It’s almost as if you are joined at the hip because their entire day depends on your ability to feed them, give them their meds, dress them and take care of their every need. They simply can not function without you. As tiring as it can be, I love taking care of Dear Son.

Or sometimes, I’ll remember everything he’s been through the last few years. The MRSA pneumonias last year and just how sick he really was. Or back in 2004, when a surgical nurse made an error and placed a feeding tube that was too large into his stomach, blocking his stomach opening. It caused him to vomit for months and endure repeated hospitalizations where he nearly died. It was a 33 days hospitalization the last time when a radiologist discovered the too large feeding tube blocked his stomach opening. Not only that, it managed to scrape the inside of his stomach. This would then get irritated. When he ate, the food would sit in the stomach and putrify. When you would pick him up bending him at the waist, he would vomit. He lost over 10% of his bodyweight in three weeks and looked emaciated. I shudder to think about this mistake. I remember calling the church from his hospital room, at 8 a.m. on Christmas morning, asking them to pray for him so he wouldn’t die. I remember eating a ham sandwich out of vending machine that Christmas day since all the restaurants were closed and wondering if Dear Son would ever eat again. No kid should have to go through that.

I remember the times prior to getting the Vagus Nerve Stimulator implanted and all of the seizures. I remember he’d have so many at night that I could no longer keep my eyes open. When that would happen, I’d lie him on the bed next to me and hold his hand so I could feel his hand shake with a seizure and then wake up to attend to it. There were so many, I never knew when I should call the doctor. It’s kind of like having a fire in your house every day-at what point do you call the fire department.? It doesn’t seem fair that he should have this much trauma in only fifteen years.

You wonder sometimes, why these things happen to such beautiful children. Why some kids have to endure so much sickness and illness in their lives. Somehow it doesn’t seem fair.

And then on the other hand, I remind myself of how grateful I am, that I have another year to celebrate with him. And indeed, I am always grateful for that. Despite that, his birthday will be different. He can’t eat so I’ll send a cake to school so his class can celebrate with him. He’ll enjoy the kids singing to him and enjoy the party.

Instead of a driver’s license, I’ll take him to get a state ID card for the disabled. It’s basically just a state ID card that identifies him as a person with disabilities. The physician fills out a form that identifies his specific class of impairment and it is recorded on the card. I thought this was important now that he’s getting older. He needs to have a formal card of identification.

We’ll open presents on Sunday even though his birthday isn’t officially until Monday. I got him a new rocking chair which I hope he’ll like. I doubt he’ll notice any difference from his current one but this one is new with a rush seat and coordinates with my dining room chairs. It has two pieces on the top that will hold his sling for the Hoyer Lift and prevent it from falling down behind his back when he sits and looks out the window. I’ll make his favorite dinner and give him a little ice cream at the end. I’ll chop it up finely, mix it all together and feed it to him slowly so he doesn’t aspirate. He always gets excited when I do that. I know it’s risky but I can’t help myself on birthdays or a holiday here or there, not to allow him to eat anything by mouth. Although he gets excited, he usually only eats/drinks what he can manage. He knows by now, that he can’t swallow very well. It’s just the thought that he likes.

As for other changes, we’ll I guess I’ll leave it at that. Sweet sixteen….and never been kissed.

Halloween Through the Years

Scarecrow-Age 4.5

Tin Man-Age 9.5

The Chef-Age 6.5

Jack-in-the-Box-Age 10.5

Cat in the Hat-Age 5.5

Gone Fishin’

We had walked around the golf course many times over the last six years. The walking trail, was located behind the apartment complex, and clearly visible from the clubhouse and from all the best locations on the property. To the south of the apartment complex were luxury condominiums that we would pass as we walked our normal route. Our normal route, started behind the clubhouse, then trailed south along the various ponds and waterways, crossing the bridge as it meandered west for a short distance before we would turn and head north on the opposite end of the course. Crossing the bridge was always beautiful. We’d see the burning bushes on the east side and on the west side, in the spring, the lilac bushes would bombard our senses as we turned the corner after the bridge. The lilac bushes were vastly overgrown and would crowd the bridge where it met the trail, making it dangerous to cross. If you weren’t careful, someone on a bike might run into you, since you would not be visible due to the outgrowth. The outgrowth or overgrowth, was in stark contrast to the beautifully maintained landscape on both the golf course and the properties that ran along the trail.

The bridge was always interesting though. There were always small groups of men, usually two or three of various ages, that would stop to fish. Some had clearly fished before, as evidenced by their tackle boxes, and others looked fairly new. Sometimes we see a father and his sons or maybe a grandpa and his grandchildren or sometimes just small young boys around ten or so, making their way down to the underpass to fish. For the most part, there was always a lot more fishing than catching going on.

Ever since Dear Son was small, I’d take him for walks. We were fortunate enough to always have a walking trail nearby, that somehow always ran along a river or body of water. Dear Son loved these walks, squealing the minute I’d open the door, and then settling down once the fresh air hit his face. As much as he loved the walks, he never paid much attention to his surroundings or to the people on the trail. Moving to this area, proved no different. We’ve made good use of this trail and it wasn’t until recently that Dear Son began to notice some of the things on our walks. For many years, I’d point out the different birds, ducks, geese or other animals that would surround the trail and he’d never notice. He always paid more attention to what he heard than to what he saw. That was until he saw them fishing.

It was only a month after my back surgery when we did our first walk around the trail. As we crossed the bridge, we heard them talking and I knew they had been fishing. The man, who appeared to in his fifties, was fishing with his two young sons. They had been casting when we had started to cross the bridge when all of a sudden he caught a fish. The young boys were delighted with their Dad’s catch and it was quite a catch at that. Normally, the biggest fish I’d see were six inches or less and this was clearly a foot and a half or so long. We stopped at the bridge and I talked to Dear Son about what was happening. I turned his wheelchair towards the men so he could get a good view. It’s really hard to get him to focus on things so far away and although they were only twenty feet down or so, it’s a lot for him to grasp. The man heard us talking, saw Dear Son and held the fish up for him to see. I couldn’t particularly tell if Dear Son really got it or not and soon we were on our way. We finished the trail and turned around to come back when we crossed the bridge again. The men were gone however Dear Son threw his leg out of the wheelchair indicating he wanted to stop and watch them fish. I told them the “men” had gone home and there was nothing to watch. We finished our walk and went home.

So this weekend we walked again and got to the bridge. As we approached the bridge, I talked to Dear Son about what I saw ahead. I told them there were three “men” fishing. We call all male persons “men” now that he is a teenager and he seems to take special pride in knowing that he’s a man. As we got closer, I noticed they were teenagers, about his age. I told Dear Son that and he got rather excited. As we approached the bridge, he started yelling out to get their attention. I stopped on the bridge to talk to them and see if they caught anything. I told them the story of the man who had caught the big fish just weeks before. I doubt they cared much and the only reason I stopped was because Dear Son wanted to stop there. He wanted to go fish with the “men.” Teenagers his age though don’t have much interest in boys like him and it’s sad sometimes when just a little conversation would go a long way.

I thought about the bridge and how much it would mean for Dear Son to go fishing with them, to do a little male bonding. The path to the fishing hole was steep and loaded with giant boulders. I could understand how the boys would like it. It was as rugged as you could get, at least in suburbia. As much as I could see, there’d be no way to get a wheelchair down there, no matter how much you’d like to.

I thought about the boys fishing some more. I thought about the fathers teaching their sons to fish and the boys remembering the good times fishing and catching the “big” one. I thought about how the young boys would go home and tell their mother about the big fish that Dad caught. And then I thought about Dear Son. He’d never learn to fish and even if he went fishing, he couldn’t hold the rod and couldn’t catch a fish. Sometimes, though, it’s not about the fishing or even the catching that’s important. It’s about being present in the moment. And on that day, he was in the moment, and loving every minute.

New Links!

I’d like to welcome a few new blogs, some of which are new and some of which are new to me.

The first is Poppy Q, a british shorthair cat, who has her own blog and she’s not even one year old. Talk about an overachiever! She is one cool kitty and you have to check her out. Not only is she beautiful, but she has a pretty good purrsonality for a blogger. Luckily, her mum did not declaw her so she can type. You can link to her home page here or just skip to some of her adventures. Here are some samples here and here. Her birthday is October 14th so I am certain that will be a big day as it will be her first birthday party.

I am wondering though if she’d like to meet my cat. His name is Wiggles. He’s six years old and although he’s older, I don’t think five years is much of a difference. He’s really handsome although vertically challenged, being a Munchkin. He’s just a bit taller than the baseboards, thank you.

Next is an Occupational Therapy blog called, “Occupational Therapy Students Belong.” Karen is a 24 year old first year Master of Occupational Therapy student who chronicles her journey.

Mom of Thomas is a mom who has started a new blog detailing her life with her four year old son who has cerebral palsy.

Rudy is a young man with cerebral palsy and is in a wheelchair. He has a blog called, “Disability Resource Directory.” He had asked me to link to his blog several times and I am finally getting around to adding my links!

And finally, one of my new favorite blogs, “Zen Habits.” The first time I linked to this blog, I was there for hours. This blog has a different topic for each day of the week. Monday is my favorite day because it is, "Productivity and Organization" day. Tuesday is Finance and Family, Wednesday is Simplicity (another favorite of mine), Thursday is Happiness and Friday is Health. Be sure to check out past links since there is a lot of good information out there.