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.

Full Circle

Sometimes, I get a little depressed reading blogs. It was kind of fascinating in the beginning because most of the blogs out there, were physician blogs, at least when I started. I was the only special needs blog, at least in the group. Sure, there were patients with chronic illnesses but I was the only one with a special needs child. In the early days, I’d submit a post every Tuesday to the Grand Rounds, and I always kind of felt like the odd man out, like where should we put Dream Mom this week, however my numbers always grew, so I figured I was doing something right.

The problem isn’t with the blogs really. I like reading the pediatric ones and I especially like seeing the kids grow up and do new things. It’s nice to see how some things have changed since Dear Son was small and on the other hand, a little depressing to see how much hasn’t changed and that parents are still trying to find answers to the same questions I had fifteen years ago.

For a while, when I read the blogs, it was a kind of relief, like, “Wow, I am glad those days are over.” But I think that would be expected by any mother my age looking at other new moms. I can also remember thinking about how trying those early years were, at least for me, always wondering if I was doing the right thing or enough of the “right” thing so that Dear Son could be all he could be. I was so afraid of the “what if's” as in, “What if he doesn’t walk?”, as if that would be the end of the world. My thinking on that day was how nice it was that I was beyond that now, and that Dear Son is who he is, and it doesn’t matter what he can or can not do because we have both grown up together. He is a charming, delightful teenager and his disabilities don’t seem to matter in terms of who he is but rather, it’s more wishful thinking on my part, that I wished he could do things, to make his life easier and I guess so he’d be happier. I have no idea if he would be happier but I would be being able to do things for yourself would be nice and not have your Mom doing these things would be even better.

But this week I was reading the blogs and it hit me. Dear Son is never going to do anything else, meaning, there isn’t anything to look forward to anymore. I mean really, his days of walking are over. His days of rolling over are pretty much done. His days of standing are over. His days of eating are over. As the other mothers are anxiously awaiting for the days their special needs sons and daughters are going to do something, well, what am I waiting for?

The last few times Dear Son has been in the hospital, I am visited on the first day of every admission by one of the general pediatric attending physicians. It’s usually at the end of the day and when I least expect it. They’ll come into the room and find a seat on the couch and I know “the conversation” is coming. It sucks. The conversation they have with me know goes something like this, “We have read Dear Son’s history and blah, blah, blah and we want to know how you are handling this situation.” What they really mean is, “Where are you now that you know your kid is never getting any better.” God, I hate this conversation. I look them in the eye and tell them very matter of fact that, “It is what it is. I love my Dear Son and want him to be happy. We live every day to the fullest that we can and when the time comes that he is gone, I will know that I have done everything I can to make sure he had a good life.” I elaborate a little bit in there but I try to just be honest and direct.

But I think about that now and I wonder if it’s really enough. When Dear Son was very small, I used to think about him and the fact that he never hit any milestones and I had nothing to write in that baby book. I wrote the post, “Don’t Hate Me Because I am Beautiful” because I described where I was at that very time when he could do absolutely nothing. Back then, I looked at him and I saw that he was beautiful and that’s what I held on to.

And now, fifteen years later, we have come full circle. We are back to the beginning and I am asking myself the same question, “What do I have?” I thought about it a lot these last few days. I don’t know what I have but maybe, I need to just love him for who he is, not what he didn’t become. I guess in the end, none of that really matters, or maybe it never did.

A Day in the Life

It was only five forty five a.m. when I went in Dear Son’s room and found him on the floor, totally under the bed with only his legs visible from where I was standing. It was not even ten minutes earlier when I had turned on the television for him and everything was just fine. He’s an early bird, often getting up very early in the morning and television is sort of a last resort in terms of keeping him quiet. Six a.m. is the time when I have to be up so he’ll make it on the bus by 7 a.m.

I wondered how on earth he managed to fall out of the hospital bed and if he was hurt. The hospital bed has a side rail for the top half of the bed, which I always have up when he’s in bed. I wondered how I would get him out from under the bed without injuring my back. I could not use the sling or Hoyer lift since I couldn’t begin to get the sling under him in that position. Not only that, I wouldn’t be able to bend down to even do it. I wondered how many more things I would have to endure this month, in the first four weeks after back surgery. My mind recalled the events: back surgery and going home the same day, wow, that was hard. Next, having ten days to recover before going back to work and then on day thirteen day, getting Dear Son back home from the Respite House. That first day home was very hard since I couldn’t bend over and the slightest bend, such as giving him his medicine, was excruciating. I figured it I could get through that, I could send him to school the next day and at least, school would care for him during the day and I would only have to manage things at home for the remainder of the day. But it didn’t happen that way. He got sick the next day at school and had to stay home for the next four days with bronchitis and an upper respiratory infection which meant I had to care for him twenty four hours a day, less than three weeks after back surgery. And now this. How on earth would I get him off the floor?

Dear Son is very quiet when things are wrong or he is in trouble. He never says a word. While most kids might yell or cry, he does none of it. He sits or lies there extremely quiet, until you notice something is wrong. His hands/arms don’t work, so he doesn’t do things quite like you or I. If he falls down, he just falls down, right on his head, since his arms and hands don’t break the fall, as he has no reflexes. So this was very scary, seeing him lying under the bed.

I talked to him and then told him to hang on while I called his Dad. Dear Son’s Dad works in the area and is around fifteen minutes away. He works three days a week, twelve hour shifts and thankfully, this was one of his days. It was now six a.m. when I called him and he had just arrived in the parking lot. I was thankful he was always early to work, especially on this day. He agreed to come over to get him off the floor.

While I was waiting for him, I checked Dear Son out. I have a little game I play with him when something happens. I basically take my hand and tap on all his body parts and ask him if everything is o.k. He usually smiles so I know things are fine but if he were hurt, he’d probably flinch so I have to watch his face.

Had Dad not been available, I’d have to call 911 to get him out from under the bed. I surveyed the bed to see how this might have happened. The head of the bed was up slightly, to assist him with his reflux. That causes him to slip down to the middle of the bed and he had gone to the bathroom and his diaper had leaked thus getting the pads on his bed wet and with his bodyweight and any movement, was like a giant slip and slide and he sailed off the bed. That’s just my guess. I honestly didn’t hear a thing which was unusual because our apartment is only 750 square feet.

Once he was off to school, I finished my morning routine and was off to work. That evening, the seizures would start and it would be the start of several days of virtually no sleep.

I give meds five times a day. I give meds at 6:30 a.m., noon, five p.m., eight p.m. and midnight. Then I go to bed somewhere between midnight and one in the morning. On this particular night, I went to bed at midnight only to wake up at one a.m. with Dear Son yelling out. Living in an apartment, I can’t have him make any noise so I jump up right away to see what’s wrong. At fifteen, his voice is very deep and not only that, extremely loud. He doesn’t vocalize much during the day, but at night, he’ll really yell out. There is nothing worse than being asleep for one hour and then having to get up. It’s long enough to just get to sleep and to be sleeping well, when it’s time to get up. I jumped up and checked him out. Sometimes, just turning him over does the trick. He can’t roll over so I need to roll him over and lift up on his hips to get him totally on his side. If he’s on his back at all, not only will he choke on his saliva, but he gets very agitated and almost seizure like, so it’s not an option. Getting up at 1 a.m. was just the beginning. I was up at 1:30, 2:15 a.m. and then somewhere around 3 and then at least another twenty times from three to five a.m. Anytime he wakes up, you have a series of scenarios that play out in your head. Basically, you want to get back in bed as soon as possible. You hope you just have to roll him over but sometimes, he needs a diaper change. If the diaper is wet, you hope it hasn’t leaked. If it has, then that means a shirt change, diaper change and changing of the pads. The pads aren’t bad unless he leaks through them all and then you have to change all of the sheets in the middle of the night. The worse case scenario is the dreaded bowel movement in the middle of the nights since this requires the most work.

I get up the next day and manage to get quite a bit done. I decide to try taking him for our first walk since my surgery. I push him in the wheelchair and we walk over two miles around the trail on the golf course. Dear Son is almost 160 pounds so pushing him plus a 100 pound wheelchair is getting more difficult. So far, so good, and no back pain. The day goes on and I put him to bed that night only to repeat the same scenario of him getting agitated, having seizures and then being up some fifty times at night. After four sleepless nights I call the neurologist.

Dear Son has intractable seizures which means they aren’t controlled by medicine. He also has a Vagus Nerve Stimulator implanted. The VNS is great however we still experience episodes like this where he has periods where he’s extremely agitated, some of which go on into seizures.

I often worry about Dear Son during times like this. I wonder what exactly is going on in his head and wonder how uncomfortable he must be. It’s also extremely hard caring for him, especially with little or no sleep. In the past four nights, I haven’t slept more than two hours in a row without interruption. It makes it very difficult to go to work and to exercise. I started exercising again and took Dear Son out walking both Saturday and Sunday, forty minutes each time. I also managed to exercise on the treadmill yesterday and today plus work every day this week. This week has been hard too, because he’s getting so big for me. It takes a lot of energy to roll him over, to get him dressed and to transition him. And nothing is particularly easy.

I wish now that I had some nursing care on the insurance plan. I don’t have any but it’s getting pretty hard now that he is so physically demanding. And that’s what makes me wonder about Brittany Spears and other celebrities.

They have it all. They have celebrity, they have money, they have nannies and they have normal kids. It doesn’t get much easier than that. They are blessed. And yet, they don’t have it together.

I looked over at Dear Son, now sitting and smiling in his rocker and I see how happy he is. I look him in the eye and he stares at me and smiles right back. I then talk to him and tell him how cool it would if we could switch places for a day and he could talk and I would listen. I go through all of the things he might say and he begins to smile and then to really laugh as I describe for him, what that day might be like. We laugh together.

Our life is good. Yes, our life is good.

Growing Up!

I took this picture Monday after getting him into the wheelchair for school. You can see the blue sling underneath him. After seeing these pictures, it's hard to believe I used to lift him every day into the wheelchair; he seems bigger to me now. It's probably a good idea to use the Hoyer Lift however I will have to start a formal weight training program or I will lose my muscles. It was always a good feeling knowing that I could lift him quickly in case of an emergency and now that's no longer an option. I guess that's part of growing up. I couldn't get him to smile for the picture, although he smiled as soon as I was done. That's a fifteen year old for you!

Hoyer Lift Assistance Needed

I am having difficulty with Dear Son's Hoyer Lift. I have an Invacare Hoyer Lift (It's a rental and converts to a purchase once it reaches the purchase price; it did not come with an instruction manual.) and a full body sling that provide head support and does not have a commode opening. I have read the sling manual that I received with the purchase of the sling. I know the sling is the correct size because the therapists measured him and because I was able to use it properly the first time.

Problem: I am attempting to use the Hoyer Lift to get him out of his hospital bed and into the wheelchair. I can get the sling positioned properly, I can lift him with the lift however the problem arises when I release him into his wheelchair. I can't seem to get Dear Son's rear into the seat of his wheelchair. I keep falling short and Dear Son's rear end ends up on the front of the seat and I have to lift him up to position his rear end in the back part of the seat of the wheelchair. I did it successfully on Wednesday, so I know it's possible but I haven't been able to do it since.

When I attach the sling onto the Hoyer Lift, I am using the second loop (I have fabric sling hooks and not chains.) closest to his head and attaching that. I can't use the loop closet to his head because I can't seem to pull it up enough to attach it to the Hoyer Lift.

I have the Hoyer Lift positioned dead center over his waist and in the full release position when I am hooking the sling to the lift.

I am guiding him into the wheelchair however he needs be more upright in the sling so that when I lower him into the chair he is in a more upright position so I don't have to lift him. I am using the second loop on the bottom of the sling as well, because if I use one further away, I can't lift him up high enough to move him off of the bed.

If I have to lift him to get him positioned into the chair, it would be a lot less aggravation for me to just lift him into the wheelchair than to waste the time to get him into the sling, move the sling to the wheelchair and then have to lift him into the wheelchair anyway. However, I am trying to be a good patient and use this mechanical lift.

As you can see from the picture, The Hoyer Lift has tiny instructions that are attached to the round bars on the Hoyer Lift however they are in a small font and go almost all the way around the lift. The print is so small, that it didn't even show up on the picture, and I was standing pretty close to it. I can't read such tiny font and I can't read in circles since the instructions go half way around the bar. What genius thought of this?

As you may have surmised, I have no patience and no mechanical ability when it comes to these things.

I tried to search for instructions for the lift online at Invacare's website however the search tool couldn't locate them. I have a vendor coming on Monday however unfortunately, Dear Son needs to get out of bed prior to Monday evening.

Problem #2: I can't seem to get this legs of the Hoyer Lift to remain spread while I move/transport him. I can lock the legs in the full spread position however then the lift won't go through the three foot wide doorway. If I unlock the legs, then the legs move toward the center (you have to have the legs spread to support the weight of the patient). Does anyone have any ideas on how I can lock the legs when they spread less the full open position? I need to be able to transport him with the legs spread about 70% to fit through the doorway and I need it to lock in place. Here's a picture of the base. In the lift I used at the Respite House, it five slots in the bottom that you could hook the metal post in to lock it in place.

Yes, technically, I know you aren't supposed to transport him however I don't have much space in his bedroom so I am transporting him from his bed to the wheelchair in the dining room, which is about ten feet away. I have been assured this is o.k. from one of the nurses who came to my apartment. She checked the base and wasn't sure how this particular one worked and she uses Hoyer Lifts every day.

Thanks.

Update

It was a very long day in the Emergency Room at Big Academic Medical Center. We arrived at 1 p.m. and were discharged at 8:30 p.m. Dear Son had a chest x-ray and blood work done. The chest x-ray showed no evidence of pneumonia and the CBC was normal. They diagnosed him with an upper respiratory infection and bronchitis. He was given an breathing treatment while we were there and that helped as well. Since we were having blood drawn, I had them draw the seizure labs as well to save us a future visit.

All in all, a very long day. My back was getting pretty sore after sitting for such a long time. Hopefully, I can sleep tonight as I was up most of last night with Dear Son. I need to get some rest since I will be going to a party tomorrow night with some people that I haven't seen in a long time. It should be great fun and a nice way to end a busy week.

Dear Son's Sick

Dear Son came home from the Respite House Tuesday night and was coughing all night and very congested. Yesterday, school called and said he was running a temperature of 100.7 and that he couldn't return to school until he was temperature free for twenty four hours. Apparently, most of the kids in his classroom have a cold that appears to be going around although none of them were febrile. Once he came home, I treated his fever with Motrin every four hours however his temperature has continue to rise and is now 102.8. His breathing was very labored all night and with his history of aspiration pneumonia, I called the nurse. Since he's had a temperature for over twenty four hours and with his history of aspiration pneumonia, I need to bring him in to the Emergency Room at Big Academic Medical Center for a chest x-ray and some blood work. As his temperature increases, his breathing will become more labored and we'll be at risk for more seizures.

I'll update you when I can.

Dear Son Comes Home!

It's hard to believe that time has passed so quickly! On the evening of August 29th, we dropped Dear Son off at the Respite House so I could have surgery the following day. On August 30th, I had a Lumbar Microendoscopic Discectomy (also known as a Lumbar Laminectomy) on L3-L4 and L4-L5. It went fine. In my follow up appointment, the neurosurgeon said that it was really two surgeries since they operated at two levels of the spine versus just one. He said he did that otherwise I would be looking at a spinal fusion in less than one year. I am so relieved to have this behind me.

We picked Dear Son up at the Respite House after school today and I brought him home. That was a long time to leave him there! He was all smiles from the time we walked into the house until he came home. I was so proud of him for helping me out and staying there so long.

As for the spine surgery, I have been recovering fairly well. I am amazed that I can have back surgery and be walking so soon. I am walking fine (O.K. maybe a little trouble now and then.) and the surgery has eliminated all of my leg pain. I can sleep in my bed and roll over easily. Prior to the surgery, I had such leg (and back) pain, that I had to sleep some or all of the night in a chair in my living room. I was unable to roll over at all due to the pain. I had some numbness in my right thigh for about a week after the surgery but that has gone away.

Although I am not supposed to drive for four weeks, I started driving to see Dear Son about a week after surgery (it was only three blocks away) and I am doing fine. I am self employed and work part time so I returned to work this week and will work three days. That seems to be o.k. but I do seem to have a little back pain towards the end of the day. I would have preferred to take more time off but I need to work to keep the income.

I still have some back pain however I am hopeful that will go away soon. There are still a few things I can't do very well and all of them involve bending over. I can't seem to bend over at all without any pain. That means, things like washing my hands, I need to wash them one at a time or taking out my contact lenses and leaning over a bit is quite painful. I can't stand and blow dry my hair just yet (I have to sit down.) and I've had to elevate the pet dishes since I can't bend over and get them off the floor. My cat has adjusted nicely to the transition.

Regarding caring for Dear Son, I am able to push the wheelchair easily. I also learned how to use the Hoyer Lift and with his new hospital bed, I am able to get the Hoyer Lift under the bed. I tried it once today and hope I can do it by myself in the morning when I get him ready for school.

The things I thought would be easy are the hardest. It is very painful to lean over and give his medications and excruciating to lean over to change him. I think putting his shoes and socks on and securing his foot straps on the wheelchair may be challenging as well. I wish I had some nursing care available to help me for another week but I don't have any coverage on either insurance plan for him. The good news is that he is in school 1/2 day tomorrow and all day Thursday and Friday then his Dad will take him for the weekend and I'll have another break. I think I just need a little more time to heal since it's only been 12 days.

I am so excited that he's finally home. It didn't feel much like a home when he wasn't here. Every time the cat did something that I knew he'd like, I'd imagine him laughing. I sure missed that. I missed getting up every day and seeing his beautiful smile. On the other hand, one of the CNAs told me that one of the things she loved the most about him was that he was so happy and that he got up every day with a smile on his face. It was nice they got to see that. It was also not much fun doing things around the house. I love making our house a home because he's in it. I enjoy taking care of him and it gives me a sense of purpose. Granted, if he wasn't here, I would be working full time and could build a different life but I think I would feel that something was missing.

All in all, it's great to have him home. I couldn't ask for more.

If You Can't Trust Your Momma....

We had many conversations, Dear Son and I, usually when he came home from the hospital. I would always tell him, when he’d by lying in his bed, that I would always take care of him, that I would always be there. We had a phrase, Dear Son and I, “where he went, his Momma went.” That’s what I would always tell him. Whenever I said this to him, he would give me a great big smile. I’d look him in the eye and then give him a bunch of hugs and kisses. As the years went on, I continued our little conversation. It didn’t really matter how old he got, I still stayed at the hospital, through all of his hospitalizations. I did leave for work, since I worked part time, but I was never gone for very long, always after his breakfast and back before dinner. There was always too much that could go wrong, I figured, and it was always easier for me to stay than it was to go.

I loved being there for Dear Son. It never really mattered to me, what he did. It didn’t matter if he slept all day or was up all night. As long as I was in the same room as him, I was happy.

When he’d spend the night at his Dad’s, we had our little ritual when he came home. I’d always tell him, as I tucked him in that night, that I was glad he was home. I’d tease him that I did enjoy getting to sleep the whole night, without getting up, but that I really missed him and that it wasn’t the same when he’s not there. They were not just words, it was true. I always felt that something was desperately missing when Dear Son wasn’t there.

It’s different when your children have special needs. Most people can easily understand that you can’t leave a baby alone, since they need your help, but I don’t think most people can really grasp what it’s like to have a special needs child. It’s especially challenging when they can’t talk, walk, feed themselves or go to the washroom. They are forever dependent on someone to figure out just what it is that they need, when they need it and how it should be done. A very tall order for most people.

But it’s the trust factor that’s really the key. They learn to rely on you for everything they need. So when I had to get ready for this surgery, it was the most difficult thing I ever faced in my life.

I can’t remember ever being so nervous about anything in my life. My back has always been a train wreck of sorts, so any little thing that stirs the pot, usually hurts a whole lot. On top of that, I’d have to relinquish control of all of Dear Son’s needs to someone else. Heck, I never let anyone else (other than his Dad) ever give any of his meds, other than the lunch time ones, since I simply did not want to make any mistakes. But it went beyond that, Dear Son trusted me, and wherever he went, I went. Except for this time.

I tried to explain to him, that I needed to go into the hospital to get my back fixed. I said my back didn’t work very well, like his legs didn’t work very well. It wasn’t because of him or anything he did, it’s just that I needed to get it fixed so I could continue taking care of him. I talked to him several times about it but I don’t think he ever really understood it until we dropped him off. It was hard too because I couldn’t make any promises to him as to when I’d see him, because, well, I just didn’t know. But the bigger issue was the fact that, for the first time, I really wasn’t in control of the situation. What if something went wrong and he couldn’t come back. What if, I could no longer take care of him? Who would? What would happen to my Dear Son?

In addition to that, there would be the loneliness. Not only would I be lonely but I would be worried about him. I would be worried he wouldn’t think I was coming back. The one thing I didn’t have to worry about were the people taking care of him. I trusted that they would take good care of him and they did.

I had my surgery on last Thursday and as we drove home Thursday evening, I called Dear Son at around 6 p.m. to see how he was doing. They had a few questions, which was normal, but there wasn’t much I could do. I came home Friday morning and was on my own ever since. By Friday night, I was missing him terribly and convinced his Dad to take me to the Respite House to see him, while he filled my prescriptions. I visited with him then and then I wouldn’t see him again until Sunday. Dear Son refused to kiss me and I knew it was because he thought I broke our “little agreement.” It wasn’t really a little agreement, trust is a big thing; when you look someone in the eye, it means something and I meant every word to my Dear Son.

I spent all day Sunday with Dear Son. I didn’t care what we did, I just wanted to hold his hand and tell him I loved him. He didn’t want to hold my hand as much, and kept pulling away. I knew what that meant and I felt bad. He thought I had broken our agreement. On Monday, I was so exhausted, I just crashed all day and then got up depressed because I missed him so much. I ended up calling him that evening and cried when I couldn’t be there. On Tuesday, I got to see him again and yesterday I drove there for the first time. I plan on seeing him again today. I am driving there now, although I am not supposed to. I can’t bear to leave him and can’t wait until he can come home.

Yesterday, I had a conversation with the Director of Nursing about Dear Son. I explained to her that he wouldn’t give me kisses the first few days. She said that a lot of the kids do different things when they are away from their parents. Some won’t look at them and then again some parents don’t visit them. I can’t imagine what it must be like for these kids to be away from home and wonder when their parents are coming. They must feel like they were abandoned.

I am thrilled that I had such a nice place for Dear Son to stay and I’ll be even happier when he’s home. When he comes home, I’ll reassure him again that I’ll never leave him, but I’ll also add something to it in case I have to go to the hospital again. I don’t ever want Dear Son not to trust me. After all, if you can’t trust your Momma, who can you trust?

Things are looking better now. I am feeling better and I am hopeful I will be able to care for him in a few days. I can’t wait for him to come home. I pray every night for a good recovery and am waiting for him to sleep in his own bed again. In the meantime, I’ll look him in the eye and tell him that he’ll be coming home soon. And I’ll mean it.

*This is a picture I took yesterday at the Respite House while visiting with Dear Son. If you look closely, you can see the deer at the end of yard. Apparently, there is a family of five that comes to eat the flowers every morning.

Dear Son's Gone to the Dogs!

O.K. Well, not exactly. The Pet Therapy dog came to the Respite House to see the kids yesterday. These pictures arrived in my in-box this morning with the following message from one of his nurses,

"Here are some pictures of Dear Son enjoying an hour with Cody, our Pet Therapy dog. Cody seemed to gravitate toward Dear Son and spend the most time with him. Dear Son got a little excited at first and then they became fast friends. I couldn't believe how calm Dear Son became and just sat back and enjoyed the kisses from Cody and enjoyed petting Cody."

This was great to hear. I was in a fair amount of pain yesterday and had great difficulty walking so I was not able to see Dear Son. I was missing him terribly and finally called him around dinner time and asked to speak to him. I was crying I missed him so much. It is really hard not being around him or be able to care for him in any way. Luckily, I got a ride to see him today and surprised him after school. He seemed happy to see me and teased me today by kissing his Barney but refused to give me any kisses. I'll be glad when I am better and able to take him home. Here's a picture I took today when we were rocking together after school at the Respite House.

The Respite House

It was a long day Saturday without seeing Dear Son. I have to admit I was a bit depressed even though I did get to speak with him. Yesterday, I called to talk to him and he was getting a bath so they had to return my call. Imagine my surprise when one of the nurses offered to pick me up so I could see Dear Son (I only live three blocks from the Respite House.). I left around 12:30 p.m. and returned around 5 p.m. They didn't tell him I was coming so he was surprised to see me. He was watching t.v. in the family room of the Respite House when I got there. (See the pictures above.) Dear Son has the green shirt on. I was thrilled to see him!

Yesterday was a very special day at the Respite House since they were dedicating a new "Serenity Garden." The Serenity Garden was built on the south end of the property as a way to honor those children who have since passed; these children stayed at the Respite House for visits at one time or another. The pastor (in white) dedicated the Garden and then one person from each of the families came up to talk about what their child who had passed meant to them and how they affected their lives. It was very touching. Near the end of the ceremony, the local fire department played Amazing Grace. It was quite beautiful and touching especially since this is the department that has showed up many times for Dear Son when I have called 911.

Bright ribbons hung from the trees and after all of the dedications were complete, they had each of the familes tie a bell on the ribbon in memory of that child. It was a beautiful day for the dedication. I couldn't help but be touched by so many of the beautiful stories. At the same time, I felt lucky to be there with my own Dear Son knowing that one day, I will pass over that imaginary line and join them.

One particular man touched me with his stories of his son. He talked about how he felt he was chosen to take care of him. He said he felt he was chosen by God because he knew that he would take the best possible care of that little boy. I thought that was a beautiful way to look at life.

Another man had adopted a special needs child. He spoke of how much work it took to get the child off to school or to go anywhere. He said he used to play music every morning while he got the child ready for school and on one particular song, it would get really loud toward the end and make him laugh so he would often comment on it. Soon the child would smile in anticipation of the ending. He said he knew then that something was going on in his brain and he built on that. That was exactly the feeling I had when I read, "The Foot Book" to Dear Son when he was little. I used to read it in a sing song voice and touch his feet at one particular time. When he reacted in anticipation of that, I knew something was going on and I built on that trying to get Dear Son into our world more and more.

All in all, a beautiful day for a dedication. I was happy to be part of it. When the dedication was over, we spent some time in the backyard of the Respite House. Here's a partial view of the backyard, which faces East. You can see the playground and the swing with the ramp for the wheelchair on the left.

Here's Dear Son listening to some country music.

Finally, they took Dear Son into his bedroom to be changed and I sat with him for a while until they took me home. This is the view from his bedroom window.

Regarding the Respite House, they have a large group of volunteers that take care of the garden and do various chores for the home. They also have a lot of high school students that come here and play with the kids, everything from games to taking them outside. The Respite House provides twenty four hour a day nursing care and has a physician that stops by twice a week. If I recall, the property is located on three acres.

The Respite House, as I refer to it for this blog, actually performs both Respite and After Hospital stays for children with Special Needs. The vast majority of children who stay here are on Medicaid; Dear Son is not, however our stay was funded primarily through local donations and in part by a donation from the Department of Human Services since neither one of his insurance plans has any nursing coverage or respite care. The cost of Dear Son's 14 day stay is over $7,300. This house is unique to our area and is greatly needed in many areas of our country. We have no places for Special Needs children to stay when their parents need a break or when they need surgery, like I do. Parents of normal children have daycare, we have none.

I am doing o.k. after surgery. I probably did too much yesterday. I was in a lot of pain last night and this morning. I am having some trouble walking. I had hoped I would be recovering much faster. I can't wait to have Dear Son home again. It's very lonely without him and I am having a hard time sleeping at night without him here.

On the plus side, he is having fun. It was also nice yesterday since they could get his dinner and meds ready and I could go home. I was very tired and it was a nice feeling knowing that they would do it and it would be fine.

Spine Surgery Update II

Yesterday was quite painful. Dear Son's Dad got my prescription for some pain relief filled last night for me. He has been so helpful with this surgery. I had been taking the Extra Strength Tylenol but it wasn't helping much. Prior to filling it, we stopped in at the Respite House and saw Dear Son. He was sooooo happy to see his Mom and Dad.

It was interesting when we were there. I started talking to Dear Son and told bim that as soon as I could walk better, he could come home. I said that I was recovering from back surgery at the hospital and that it was nice because he didn't need to have surgery or anything done. He could just relax and play since they weren't going to do anything to him. He started really laughing which is his way to let me know that I hit upon what was worrying him. Once I realized that he may have thought he was having something done with all the nurses around, I re-emphasized that he was going to be fine and this was just a "Play House" for him until I got better. He laughed some more. I felt bad that I didn't think of this before. Here he was worried they were going to do something to him medically! I gave him a bunch of hugs and kisses and last night he kissed me a few times and then played his Bedtime Barney song of "I Love You." We call that our song and he is able to hit the button with his nose and bypasses over the other five songs until he gets that one. That's his way of saying, "I love you." All in all, it was a wonderful visit. He looks so happy and right at home there. I'll try to take some pictures of the Respite House next time. It's the perfect place for these kids.

The nurses have been fantastic there. Dear Son is spending plenty of time in this big rocking chair that they have for him. They have volunteers that is spending some time with him as well. I called Dear Son at school yesterday and then after school at the Respite House and he was busy looking out the window in his rocker with a nurse on either side of him rocking some babies. He sure loved that!

The new pain pills seemed to help. I took them at 9 p.m. since I was exhausted after seeing Dear Son. I hadn't been able to lie down much since the surgery because it was pretty painful in that position. However last night I was able to lie down in bed and sleep for six hours without having to get up and sit up in a chair because my leg pain was so bad. My leg pain is gone so that's wonderful. Now I just have to heal from the surgery.

It should start getting a little easier for me after today. One of the nurses told me the second and third days are the worse. I feel better already without the leg pain and better knowing that Dear Son is well cared for and very happy. I can't wait until he can come home. I am feeling very blessed that I have such wonderful help at this time; everything from the nurses caring for Dear Son, from his Dad for helping me, and for all of the well wishes and comments from friends, bloggers and family. I couldn't ask for more.

Spine Surgery Update

Surgery went fine yesterday. I am glad it's over. Had severe nausea after the surgery which is expected but getting better. Had a lot of bleeding when they took both IVs out; they had a hard time stopping it. Went in at 9:30 a.m. for a 10 a.m. surgery. Surgery was done at 12 noon and took 1.5 hours, woke up at 3:30 p.m. with severe nausea and out of the hospital by 6 p.m. I was ambulatory and totally independent by 9 p.m. Didn't sleep much and still can't lie down yet. I have some new numbness in my right thigh but that should go away soon.

The pain is gone from my left leg however my back is still pretty sore so it will be a few days before I can tell if it worked. I am taking some extra strength Tylenol right now for pain.

I am home this morning and on my own today.

I called and spoke with the Respite House last night caring for Dear Son. They put him in a rocking chair after school and he loved it! They said he was so happy! They started his dinner by 5 p.m. and had his meds in by 5:15 p.m. so that made me happy. He has another young man around nine or ten years old for a roommate and he loves that! I hope to talk to him today and I'd love to visit him tomorrow if I can get there.

That's all for now. Thank you for all of your support.

For the Love of Dear Son…

I saw Dear Son sitting in the wheelchair. The school bus had just arrived at our house and the bus driver and his new aide were searching for my number in their cell phones. Normally, I am always there when Dear Son gets home from school, but today, the bus had arrived a half hour early and I was just pulling up behind it. The aide saw me and turned Dear Son’s wheelchair in my direction and I saw his face. He had a startled look on it, his eyes searching desperately for me, but he couldn’t locate his Mom. He kept looking around for me, not recognizing my car which was only twenty five feet away, behind the school bus. The bus driver caught a glimpse of me however it took a minute for him to raise the ramp with his remote control and then a few minutes or so before he could pull the bus forward enough so I could pull up into the driveway. Dear Son was still looking frantically around, his face startled as if to say, “Where is my Mom? Where is my Mom?” My heart broke as I saw his face. If it were a movie, they would replay the words over and over again, as I did in my head, imagining what was going on in Dear Son’s mind. I called out to him as I passed the wheelchair and told him I’d be right with him in a minute, as soon as I parked the car.

Dear Son processes things he hears better than things he sees, especially when he’s nervous. As soon as I saw him, I kissed him and put my hand on his shoulder and told him it was going to be fine. I said that I would never leave him alone and that I would be there when he gets off the school bus. I don’t think he felt very comforted as we walked into the house. I pushed the wheelchair in the living room, turned on the t.v. for him and told him I needed to get the groceries out of the car. After they were put away, I kneeled down and talked to him in the wheelchair. I looked him in the eye and told him that I was not going to leave him anywhere. I kissed him some more on the head and he leaned over and licked my hand. That’s his way of giving a kiss as he has little oral motor control. It’s also his way of thanking me for explaining it to him.

I have had this conversation with him many times before, especially when he’s in the hospital. I tell him that “where he goes, I go.” That’s our policy. If you get Dear Son, you get his mother. He likes it when I tell him that. I am like his protector, and more importantly the voice he doesn’t have.

The words felt different though since I knew that in twenty four hours, I’d be dropping him off at a facility that will care for him for the next two weeks, while I recover from back surgery. It’s been many years since I have trusted anyone to care for him for a twenty four hour period. My rule of thumb is that I will use a Respite sitter only during the daytime, after breakfast and before dinner is the window I use since I don’t like anyone else giving his meds. Too many mistakes. When I have a sitter, I prepare his lunch time meds in advance so there are no errors. He only has one medication at lunch, as opposed to the other times of the day where he has more. He’s on six seizure meds and two GI meds and the timing for him is important. Some have a half life and he has a Vagus Nerve Stimulator but the reality is that if you are too late with the meds, he can run into trouble. I am pretty punctual about his meds and never go over a one hour window. I give them four times a day but due to a recent change, I now give them five times a day. That’s a lot for someone else to administer, even medical professionals, and a lot of room for errors.

I talked to Dear Son several times over the last two weeks, talking about my surgery. I try to keep it fairly simple. I told him that I need to have some surgery on my back and have to go in the hospital so I have to have someone else take care of him for a while until I can lift him again. I tell him that he has to help me and then once it’s better he can come back home again. I tell him I need the surgery so I can keep taking care of him.

Deep down, it’s been difficult. I’ve have back issues since the third grade and I’ve needed surgery for many years to fix my issues. I also have three large disc herniations in addition to my existing issues. For the first time, my back issues were so bad, that I wondered how I can continue to lift him. I have been in severe pain for four months now. In the beginning, it felt like a bomb blew up in my back and I just wanted to scream at the top of my lungs the entire day. It improved somewhat after the anti-imflammatory medication but it’s been worse the last ten days since they had me discontinue it prior to the surgery. I do have a Hoyer lift but still, there are a lot of times when a Hoyer lift just won’t do the trick and you have to use your muscles. I worry about the “what ifs” and if I am going to be able to take care of him when this is over. The good news is that it’s minimally invasive with no hospital stay but I don’t know what that means in terms of really being able to lift him. I have him there two weeks.

I decided a long time ago that I would always take care of him and that I would do whatever it took to do that. Along the way, people will ask me about putting him in a home and in the last few years, I have said I “may” think about that when he’s an adult, but that’s as far as I will go. I believe that kids should live at home. I wouldn’t want to have to live somewhere else and I don’t want that for my Dear Son. When your child has mental and physical disabilities, they need you “more” not less. You are their protector. Mistakes happen and that’s why you need to care for them. I’ve done numerous hospitalizations with him over the years and I’ve seen many medication errors or medication that is late, etc. I know that being there is the best thing you can do for your child.

So tonight, I’ll have to take a leap of faith. I’ll drop Dear Son off after his dinner and I’ll have to let someone else give him his midnight meds, morning meds, get him off to school and essentially take care of him until I am able to get there to see him. He’s only three blocks from my house, but I am not supposed to drive for ten days. I plan on breaking that rule as soon as I am able since I can’t go without seeing him for more than a day.

I think about him often, especially when he’s at his Dad’s for the weekend. I love being able to sleep but the house is really empty when he’s not here. When he comes home, we have this little ritual. That night, when he comes home, as I tuck him into bed, I tell him that I hope he had a good time at his Dad’s but that I am really glad he is home. I tell him that it’s not the same without him here and that I can’t sleep very well because it’s true. He smiles when I tell him that and he’ll lick (kiss) my hand. So tonight, I’ll drop him off and tomorrow I’ll have the surgery. But I doubt I’ll sleep very well, until I see him and reassure him that he’ll be coming home soon.

In the meantime, I have some pretty nice nurses who will care for him. I think he’ll love the place, it sits on three acres and has a nice big rocking chair for him, along with a wheelchair swing for him to swing on (It’s a ramp that you roll the wheelchair on and then you lock the wheelchair and the ramp swings back and forth.). I think he’ll love the other kids too and there will be a lot of activity and a lot to do. I’ll miss him a lot. It’s a gift to be able to take care of your children and a gift to have someone to take care of. So today after school, I’ll sit him down and tell him again, how much I love him and that I need him to help me until I can come over to see him. I’ll kiss him goodbye tonight knowing he’ll be comforting himself with his Bedtime Barney as he goes to sleep. In the meantime, I’ll say a prayer or two, and thank my lucky stars that I have people who will take good care of him until I am on my feet.

Note: Dear Son's Dad and I dropped him off last night at the Respite House and it went well. Both the nurse and the Director of Nursing, whom I know fairly well, stayed late so they could admit Dear Son and so that it would go well for me. They had a nice big rocking chair in his room which he was thrilled about! He started laughing and wanted to go in it right away! He rocked while they admitted him and I signed the papers. I brought in a notebook of his morning, afternoon and evening routines to make it easier for them and I sent all of his food and changing supplies to school in advance so I don't have to worry that he won't have his food to eat. All in all, a nice drop off. Dear Son wouldn't give me a kiss before I left though! He was happily nuzzling his Bedtime Barney and laughing when I left so I felt good.

This morning, I go in for back surgery. It may be a few days before I can post again.

Dear Son appears in the July 31st edition of Neurology

FYI-For those medical professsionals, you can read more about Dear Son and his particular mutation of the ARX gene in the July 31, 2007 edition of Neurology-Volume 69, Issue 5 which can be accessed at http://www.neurology.org/ The title of the article is, "Expansion of the first PolyA tract of ARX causes infantile spasms and status dystonicus." Dear Son is referenced in the article as Patient #4 and appears in Video #4. The video of Dear Son was taken a few years back shortly after the gene was discovered. An MRI of his brain is included in the article.

The geneticist also informed me that another co-worker will have a mouse model of Dear Son's mutation ready in the next six months or so and one of his colleagues in another city will have a mouse model and test different meds in them, although this will probably take several years.

As an FYI, Dear Son was tested for the ARX gene shortly after it was discovered. He was tested after the geneticist who discovered it was doing rounds (Dear Son was hospitalized at the time)and thought he fit the profile for the gene. Dear Son tested positive for the ARX mutation and shortly after that, I agreed to the video which you will see in Video #4. At around the same time, they asked for a skin sample (DNA) so they could create a mouse of the gene and I agreed. Although the gene is x-linked, I tested negative for the mutation. You can read more about Dear Son here.

I am thrilled that we are learning more about this gene however it is really hard to watch the videos of these kids.

Top 10 Things Dear Son Has Taught Me

10. He taught me that children with disabilities are not children to be afraid of, but rather, children to celebrate. They are the children who will cherish all the love, kindness and happiness that you bestow upon them, not once in a while, but every time they look you in the eye.

9. He taught me that while to the world I am one person, to him I am the world. I feel this every time I wrap his arm around my neck and he nearly chokes me giving me a hug since he can’t control his grip.

8. He showed me that things I took for granted before he was born, are blessings to him and those like him. To be able to run, to be able to walk and to be able to care for myself are the big goals in life for children like him.

7. He showed me how to communicate and make friends with others, without using any words. I watched in awe as he’d go into a room, any room, and charm them with his smile.

6. He taught me that giving of myself to care for him, is a gift I give myself.

5. He taught me that the value of a person can not be measured by what they can do, nor by what they bring to the table, but to what you learn about yourself while taking care of them. That’s the best take away you can get.

4. He taught me that people who brag about the things their children can do to make themselves look better, only look better for a minute in public, but never as good as the mother who can look themselves in the eye every day and know they gave their child all that they had that day.

3. He taught me that the rewards of being a mother are not diminished in any way, having a child with severe disabilities. What a wonderful surprise.

2. He taught me that when there is absolutely nothing left, there are always miracles.

1. And the top thing that having a child with disabilities has taught me, is that when you love a child with for who they are, and not what they can do, your heart will always sing with joy every time you see their beautiful face.

Be sure to check out other Top Ten lists this week when David, from Growing Up With A Disability hosts the next disability blog carnival on Thursday, August 23rd.

Home

Dear Son was released from the hospital yesterday. He is doing well and seems to be more alert since the med changes. More importantly, he is sleeping through the night.

We were initially scheduled to be released this morning however I was having a lot of leg and back pain and I wasn't certain I could endure another night. We left the hospital at 4 p.m. yesterday so it wasn't much of a difference to stay until our 10 a.m. release this morning, especially since Dear Son was stable.

Dear Son thoroughly enjoyed the day yesterday, since the clowns stopped by to see him for the second time in the last two days. He had some big belly laughs with all of their antics. It's great to see him laughing so hard and he's always a little sad when they leave.

He was thrilled to leave the hospital yesterday. He laughed and yelled out from the minute I put him in the wheelchair to go home until he got outside to get into the car.

Thank you for all of your concern for Dear Son. It was appreciated.