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.

Update

Dear Son continued to sleep through the night on the new dose of medicine however he also began sleeping through the day as well. As a result of the increased meds, his EEG did not show any seizures, although it did show abnormal activity. Since that time, they have reviewed his seizure meds and decided to remove the Phenobarbital. The Phenobarbital, causes the other medicines to metabolize faster. Once they remove this, the drug levels of the other medicines should increase and therefore they will be able to reduce his overall number and quantity of medications since it will take less medicine to attain a therapeutic level. It will take approximately a month or so before that drug is out of his system and around three months overall to adjust the other medications. In the interim, removal of this medication may cause some breakthrough seizures during this time. As a result, they will be keeping him there a few more days as we begin this process.

One of the questions that I had was that Dear Son is a hyperutilizer of his medications and I was curious as to how much of the hyperutilization as due to Dear Son vs. the Phenobarbital. They aren't sure so we'll have to wait and see. (Because Dear Son hyperutilizes his seizure medications, it's important to get "trough" levels.)

We made the first changes yesterday and he seemed to have a pretty good seizure this morning. I suspect as we decrease these medications he will become more alert.

As a follow up to a previous post regarding the school bus accident and aide for summer school, I met with the Special Education Cooperative and the School District Representative yesterday and the IEP has been formally changed to allow for an aide for him on the school bus. In addition, they will also request an air conditioned bus for both the normal school year and summer school. They had no problem with either request.

I probably won't post again until possibly this weekend unless we leave the hospital sooner.

Dear Son

Dear Son was admitted to Big Academic Medical Center yesterday for some EEG testing. For the last few weeks, he had not been sleeping through the night and I was up many times with him, and some nights upwards of fifty times a night. At one point, he was not sleeping more than five to ten minutes at a time. He was also getting quite weak, unable to sit up for only a brief period of time in the morning and then would sleep the rest of the day. I paged the neurologist several times last week and we made several increases to one of the medications and at the end of last week, finally slept through the night and unfortunately, the entire next day. At that point, it was decided that we should bring him in for some EEG testing. He has slept through the night the last three nights and perhaps we have the dosage down now so I am not sure what this test will show. At the very least, we need to have more information. I suspect we will be there for two or three days depending on what the EEG shows.

As you may recall, Dear Son's disabilities were caused by the ARX gene mutation. As a result of this mutation, he has no GABA and he has intractable seizures. He does have a Vagus Nerve Stimulator implanted, which has worked well, but is now on the maximum setting.

As a result of his inability to sleep, I have not slept very much, hence the delay in any postings. In addition, I had to terminate the babysitter last week which only added to the mix. It's always difficult trying to find some good, reliable help for special kids like Dear Son.

Dear Son is in good spirits and is enjoying country music (his favorite) while we are there. The television in our room has not worked since we were admitted and it's been a long night without pc access or television. In my haste, I left most of my reading materials at home.

I will post an update as soon as I have some information although I suspect it won't be until later this week.

Thank you for your concern for Dear Son. Your comments always delight and amaze us.

*Photo is of Dear Son as a little boy, prior to strabismus surgery.

New Project: Medicine Tray

From time to time, I create new projects in my free time. In the past month, I created this new medicine tray for Dear Son. It worked out so well, I thought I'd share it with you.

A few months ago, when I started thinking about re-decorating Dear Son’s bedroom, I sat down and wrote out some of my wants and needs. One of the items I wanted was a tray to hold his medications. Currently, when I give him his medications, I place the syringes on a plate and take them to his room. I have to lie a pad down on his bed so that the syringes don’t roll off and get medication on the bed. (I use a separate container to hold his feeding bag and his formula so that wasn’t an issue.)

I looked around for quite some time to find the right tray. I needed one large enough to hold his syringes but light enough to make it easier to carry since I am often carrying his other bin that holds the formula, feeding tube and feeding bag. Many of the ones I saw were more of a breakfast tray, which would have been too heavy. I needed one light enough to carry in one hand. I checked out some wooden ones, some wicker ones, metal ones however none seemed to fit the bill. I saw some with some mosaic tiles on them and some with all sorts of designs. Most were too heavy and too large.

I was about to give up with finding the right tray-large enough to hold all of the syringes and light enough to carry with one hand when I stopped in Michael's, the craft store one day. I was looking at all of the ways they organized their art supplies and looking for some new organizing products for one of my clients. It was there that I came across a small, lightweight, unfinished tray, just perfect for his medications. Usually craft stores drive me insane and I can't wait to get out of them however I had some free time so I decided to really look around. The tray was only $2.99. I took it home and worked perfectly! I painted it white and then used some of the wallpaper that I purchased (I use that as drawer liners to line Dear Son’s nightstand and dresser drawers.) and cut it to fit the tray. It works perfect. And the best part is, it's is amazingly functional. I love using it. I am still trying to find some kind of medium to seal the tray. Until then, I am using parchment paper or aluminum foil on top of it so it doesn’t get messed up. I have thought about getting a piece of glass cut to insert on top of the tray.

After I began using the tray, I liked it even more. I can now prepare his midnight meds right after dinner, crush the pills and set them on the tray until it's time to give them. I add water right before administering. I also use the tray to prepare his lunch time medication that the sitter needs to give. This helps since I don't have to worry about her spilling any medication on the carpet or upholstery.

Picture #1: The empty tray on Dear Son's bed.

Picture #2: Dinner meds and a flush.

His World, My World, Our World

It seemed like such a simple thing. Dear Son was sitting in his wheelchair, straining to look around the vase on the table to see the ground squirrel sitting on the edge of my flower pot. I had just wheeled him into the dining room, so I could brush his teeth and wash his face and hands, like I do every morning when I noticed the little ground squirrel on the patio outside. He’s a cute little fellow, who is the first one at the bird feeder in the morning, stealing all the sunflower seeds from the bird seed mix and storing it away for the winter. His antics are watched closely by our cat Wiggles, who sits next to the patio door, for a bird’s eye view of the activities. The ground squirrel is affectionaly referred to as,”Wiggle’s little buddy.”

The ground squirrel has taken a liking to standing on the edge of my flower pot and looking around or sometimes chirping. The cat sits and watches him, with his tail flopping back and forth and Dear Son enjoys hearing me talk about the activities.

As I washed his face, I pointed out Wiggle’s Little Buddy to Dear Son, sitting on my flower pot chirping. His wheelchair had been facing me so I could wash his face and I was moved his chair forward so he could see the ground squirrel.

His eyes struggled to find him and then they locked onto the squirrel and a broad smile broke out across his face. He knew the ground squirrel should not be sitting on the flower pot as he was going to get in trouble. The prospect of someone getting in trouble, is quite delightful to Dear Son. In actuality, no one really gets in trouble, I’ll just talk as if he might. I tell Dear Son that the ground squirrel had better get out of my flower pot or he’s going to get “in trouble.” Dear Son laughs as he knows I don’t like the little ground squirrel dumping the dirt of my flower pot onto the ground hence the smile. He knew I was going to tell him that the ground squirrel had better get out of my flower pot “now”.

It was a simple thing, Dear Son looking out the window seeing the antics of the ground squirrel, but it was more like fifteen years in the making.

When Dear Son was just a baby, I remember distinctly, trying to get him into my world. It was as if there was a giant clear plastic bubble surrounding him where we could see in but he could never see out of the bubble. His world was defined as anything that happened inside the bubble and he tuned out everything that went on in the real world. Probably too much information or too stimulating for a child with seizures.

I remember the early days, when Dear Son was just a baby, lying on the carpet while I read him books. It was frustrating because I could never get through to him. Sure I’d love him and care for him but the reality was, that he never indicated that he was aware of my activities. I grew frustrated and knew I had to figure out a way to connect with him. I began to read him books, in a sing song fashion, always high pitched of sorts and with the same cadence every time. It was often more like a poem or a song than a book. Each book having it’s own tone. I loved rubbing Dear Son’s little feet, removing his socks as I read him stories. On one particular day, I was reading Dr. Seuss’s Foot book to him and I decided to put in his name and referenced his feet. Prior to putting in Dear Son’s pet name, I changed the cadence ending in a sweet sing song voice with the words, “even Dear Son’s feet.” As I said the words, I grabbed his feet and rubbed them and rocked them back and forth. I read this story over and over and over again, night after night. I would spend hours sometimes reading to him, maybe an hour or so at a time. On one particular night, right before I got to the part about Dear Son’s feet, he made a face indicating that he knew what was coming next, the part where I grab and rub his feet. I don’t remember now if it was a smile per se or just his face lighting up but I remember the fact that he was anticipating what was coming next, the rubbing of his feet, and I knew then, that he had memory. That was huge.

With that information, I continued reading to him but also talking to him a million times a day, about just about anything. But the one thing I could never get him to do was to pay attention to things visually, it was always auditory things that he attended to most, mainly my voice.

As the years went on, I remember trying to get him to pay attention to the things around him. If there wasn’t any interaction, he acted as if he didn’t know it was there. I remember distinctly our mallard ducks, Dolly and Donald, that came to our bird feeder every day. They sit right outside our French doors, eating the bird seed, with Dear Son sitting and leaning against the window, his nose pressed tightly against it, and yet, he never even noticed them. I would point out the ducks and talk about the ducks, but when I would call his attention to something to look at, he never acknowledged it.

Over the years, it never changed. There was his world and my world. Most of the time, he would be in his world, tuning out all of his surroundings. It was odd in so many ways, that he would just tune so much out. I always viewed it as sensory overload even when his seizures were well controlled. I would be frustrated at times, with his inability to connect with the outside world, wondering just how I might get through.

Over the years, you could see glimmers of light. When he was four years old, he enjoyed the Christmas tree at school. He seemed to like the bright lights or more importantly, trying to pull on them. He’d reach and reach trying to get those arms and hands that weren’t functional to work. At some point, his crippled grasp would get entangled with the lights. This was success of course.

These were brief pockets of course, reaching out into the outside world or my world. Most of the time, he’d be oblivious to his surroundings, not noticing a thing as I wheeled him onto the little school bus each morning. I always wondered how I was ever going to get through to him and if he’d ever really be present in our world.

Bit by bit, over the years, he began to come into my world. Looking back, I’d have to say the turning point was probably daycare. When he was nine, I moved to a new area and had daycare for him. The kids were much younger, mostly two to five, and he was the only special needs child they ever had, but it did wonders for him. Soon the outside world, full of the antics of the other children, invaded his world. The kids fed him snacks, they played with him, they talked to him, they held his hand. They went where I could never go and made him want to be in our world. He was especially delighted when things went wrong at the daycare, the more chaos the better and if someone was getting scolded, all the better. He loved the prospect of someone getting into trouble. The daycare owner, in her slavakian accent, would tell the kids not to do something, and Dear Son’s eyes would light up, at the prospect of them getting into trouble. Sometimes, he’d laugh so hard, that the owner and all the kids would start laughing and he managed to turn the whole mood into one of laughter. That’s the kind of kid he was.

So while it seemed like a simple thing, looking out the window at the ground squirrel sitting on the edge of the flower pot, it was huge. No sooner than he looked, the ground squirrel jumped off the rim of the flower pot and ran as fast as he could into the yard. Back into his world. And as for Dear Son, he stayed in ours. Sometimes, the simple things, mean a lot.