Still Life: The Portrait of a Child

It started with a picture, on Dad’s pc, of Dear Son sitting with his paternal Grandma. His face, smiling and full of life, was in drastic contrast to the teenager he had become. Gone was the excitement, gone was the energy and gone was the little boy. We hadn’t noticed how much Dear Son had changed until we saw that photo. The photo, reminded us of Dear Son’s younger days, walking on his knees into the kitchen, to let me know he was hungry and it was time to eat. I loved those days. I always felt it was important to acknowledge Dear Son’s communication efforts and that was how he did that. It wasn’t enough just to feed him at normal mealtimes, but to give him some food or a drink when he wanted. That was an accomplishment.

We talked about the picture and then let it be. From time to time over the past few weeks, the photo would surface and his Dad might mention how he wished he could do those things again. His paternal Grandma, would talk like that as well. This was a different position for her, after drilling me for years with the same question, “When is he going to be normal?” She asked me that for the first ten years of his life. I let it go most of the time, not wanting to state the obvious in full earshot of Dear Son, but on occasion, I’d tell her, “he’s never going to be normal.” At those times, my feelings would be hurt. There wasn’t any malice to her statements, but rather, it was more or less wishful thinking on her part, having never been around a child as disabled as Dear Son. Now she says, “I wish he could walk on his knees again” or she’ll say, “it would be great if he could do “x” like he used to” and then she trails off. The change from the question, was just another indication, that life for him was different and everyone was beginning to notice.

Dear Son hasn’t been able to stand since 2004. He had the g-tube implanted that year for medication only and there were some issues after that. A surgical nurse had put in the wrong size tube and kept trying to adjust it for months. That error, compounded itself and the too large feeding tube blocked the stomach opening which led to months of vomiting and missed days at school culminating in a 32 day hospitalization where the error was discovered. That wasn’t until he had lost over 10% of his bodyweight in a month and he had grown quite weak from the months of vomiting. He never regained his ability to stand again.

As time has passed, his body continued to fail him and he needed more support. We got a larger wheelchair, a new hospital bed, the hoyer lift, a hydrolic bath chair and switched to g-tube feedings exclusively. It seems almost that his physical abilities seemed to have diminished in direct proportion to his vertical growth, although we know that is not the sole or primary reason for his failures. I am also used to helping him more. Helping him roll over at night was just the beginning. First, it was just a roll and now I am lifting his hips up off the bed to complete the roll followed by lifting his head off the pillow and his shoulders to position him just right. You don’t notice those things really. They sneak up on you.

It wasn’t until I was talking to a new sitter this week that I became uncomfortable with some of the changes. The sitter, an aide in his classroom, is also his designated bus aide. She rides to school with him every morning and evening, in case of medical issues. I hired her to babysit this Saturday evening, since I am going out for the evening; I have been invited to a black tie affair for a non-profit fundraiser that benefits Special Needs children. This will be the first time she has cared for him in our home and I was telling her what to expect. It was then that I realized his life isn’t quite the same. You get used to doing things a certain way, a way that helps Dear Son and then, when you have outside eyes looking at it, it feels odd, almost like you have to defend your behavior, since it’s so out of the ordinary.

I was explaining that when she arrived on Saturday, he would be in bed. He goes to bed around 5 p.m. which is when I hook up the feeding tube for his dinner. Approximately fifteen minutes after that, I give him his seizure meds. He’s on quite a bit of meds and most knock him out pretty quickly, meaning he falls asleep. Once he gets the meds, it’s nearly impossible to move him and it’s just not safe, hence I put him in his bed at that time. He typically will sleep until the next morning, waking up for diaper changes and drifting in and out of sleep. He likes to listen to his iPOD while he gets dinner and sometimes I have the t.v. on but the mute button pressed so he has something to watch. Certainly, he’s not asleep 100% of the time from 5 p.m. on, but yet, it’s different. While I still need to change him, give him his midnight meds and roll him over every two hours or so, it’s our reality. But explaining that to an outsider, is well, different.

I guess I was really stuck by the contrast the other day, when I got him off the school bus. His head was lying on the right side of his chest, and his body was positioned in his wheelchair. There was no movement of any kind and if you didn’t know any better, you may have thought he was beaten up on the bus and left for well, you know. The inside bus aide* moved his arms and placed them back on his arm rests so he could maneuver him off the bus. Dear Son’s arms, don’t work very well. He has no use of his hands or arms so when they fall off the arm rests, they have to put them back on so they don’t get caught in the doorway as they roll the wheelchair onto the ramp. I joked to the bus driver and said it looked like Dear Son was beaten up on the bus, given his condition. Dear Son never looked up. He was just tired. Tired from a day at school. As I rolled him off the ramp, I kissed his head and rubbed his shoulder; I told him I was glad he was home.

The days take a lot out of him now. Just getting through the day is a major accomplishment. After he gets off the school bus, I take him in the house and use the Hoyer lift to get him out of the wheelchair and into the rocker. From there, he likes to lie his head on the dining room table and listen to his Christmas House. He used to look out the window but he can’t sit up well enough to do that anymore.

I glanced at the picture again and thought about him as his head lie on the table. The picture brought back memories of his spirit, his excitement and his wonderful smile. It’s kind of like aging, when you look at a picture of someone when they are younger and then you see them twenty years later as a senior citizen, with lines on their face that tell the story of how they lived their life. You see the smile lines around their eyes or maybe you see the frown lines on their head, or you see the lines above their lips to indicate they were a smoker. But what do you see when you look at the face of a child’s picture, of kids like Dear Son? You see the life they had. But not who they were allowed to become.

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Note:*There are three employees on the bus- a bus driver, an inside bus aide who does the tie downs for the wheelchair to the floor for safety, and then his female bus aide who rides the bus for medical issues.

Great Day

Dear Son had his botox injections this morning despite my late start. We were scheduled to be there by 6:30 a.m. which means we needed to leave by 5 a.m. or so to be on time. That means a 3:30 a.m. wake up time for me which did not happen. I am not much of a morning person by any stretch of the imagination. I do try to help myself by setting my alarm clock 35 minutes ahead of schedule to help me out. It's not so much getting up, it's really being somewhere that early, after being up all night, which is what I don't enjoy. I managed to get up around 4:30 or so which meant we were a little late as we arrived at 6:45 a.m.. Dear Son's Dad helped us and did the driving so that was great. The radiologist was late as well due to the snow we had this morning and his 7:30 surgery did not start until after 9 a.m. due to the radiologist delay. The roads were a bit messy so I was fine with that.

The surgery went great. Our surgeon was someone whom I had never met. Our normal ENT is just starting to do the botox injections however this surgeon has done them for some time. She is also married to the doc who installed Dear Son's g-tube a few years back. She is a very cheerful young woman and a pleasure to work with. As a parent, it is really nice when you have physicians who love what they do. The surgeons who really love surgery always stand out in my mind because they are just so happy on surgery days. It's like an extra bonus for me. We get the surgery and all that good energy to boot.

Dear Son received 45 IUs into his parotid glands and another 20 IUs into his submandibular glands. The botox injections should help decrease drooling and help him manage his saliva at night. I should see some results within five to seven days.

We left the hospital and got home around 12:30 p.m. or so. Dear Son was tired so he slept the rest of the day. I managed to get four hours of uninterupted sleep this afternoon so I am feeling like a million bucks. In addition, I managed to get a few medical claims resolved to boot.

Dear Son is able to return to school tomorrow and I am back to work the rest of this week. Thanks to Dear Son's Dad today who was a great help for the surgery. We are not able to complete any office visits or surgical visits any more without his assistance so it's great that I have someone who can help me with all of this.

Tonight I am going to relax with my virtual champagne (thanks to Island Baby-see comment on last post) and check out some kitty blogs. I have to see what Poppy Q is up to and see what pretty new dresses Ms. Daisy, the Curly Cat (or Curly Gurly Cat as I like to refer to her) is up to.

Long Days

Sorry for the long delay between posts but I've been pretty tired. I am a bit surprised at how exhausting twenty four hour a day care for Dear Son is now that he is so much taller and larger overall. The Christmas break was two weeks long and was quite a bit to handle. During that time, he got backed up and once I realized it, I was able to increase his Miralax to "assist" him. It took a while but once it kicked in, I was one busy mother. I did nothing but bowel movement diaper changes for several days straight. I thought he was finished however it would take another week before he was back to normal. Luckily, I was able to avoid a hospital visit. It's pretty easy for these kids when they don't move around as much to get backed up. Dear Son is on Miralax all the time due to his motility issues that are related to his gene mutation.

Once he went back to school, there were more issues with seizures. One of his meds was increased however I am not certain that it's eliminated them; it took over a week before I started seeing enough of a difference. Typically, it helps fairly quickly. He still has some nights that he up quite a bit.

He had half days of school on Thursday and Friday. On Friday, he managed to fall out of the rocker but luckily wasn't hurt. I was sitting only a foot from him but I wasn't able to catch him. Once he fell on the carpet, I was unable to get him up so I had to call his Dad at work. His Dad, works only fifteen minutes from our apartment so he was able to come and lift him into the chair.

He continued to have issues on Saturday and Sunday and was up at least once every hour last night. He kept crying out which is unusual for him. I tried turning him over and finally started using his Vagus Nerve Stimulator. I am guessing they were seizures because the VNS seemed to help. In addition to being so tired, it's also getting physically harder because everything requires so much more effort. Turning him at night requires lifting his hips off the bed as well as rolling him over. Positioning him in the sling can be difficult on days when he has no tone because I can't keep his body somewhat straight for lifting. On the days that he is out of school, there is a lot of lifting to get him in the Hoyer Lift, then the rocking chair, the repeated diaper changes which require that I move him yet again and then all of the times I have to straighten him up since he can't sustain the sitting positon. That's nearly five days of care without a break.

This morning, he was fussing so I started his food early and got the seizure meds in him. After that, he finally fell asleep for a few hours and so did I. Once he was up, he was unable to sustain a sitting position in his rocker despite repeated attempts. It was a frustrating day for both of us since I felt bad he couldn't sit up at all. All he wanted was to listen to his music on the dining room table. He has this Christmas House that he loves to listen to. He sits in the rocker at the table and lays his head on the table to watch it. Sometimes, he's able to lean back and just rock but most of the time he falls to his right side. It's a pretty boring day for him to lie in his bed all day. I moved him to the upholstered chair which requires less work for him however after a few minutes he wants to try the rocking chair again which he is unable to do.

He continues to choke on his saliva however I am excited because tomorrow he is scheduled for botox injections. The botox injections should help manage that issue. We have waited fourteen months to get these. Apparently, there have been some issues with finding a radiologist. We are scheduled to be there at 6:30 a.m. so we'll have to get up early. I told Dear Son that we were going to the hospital tomorrow to get something to help his choking. I said they have something that works great for kids and the best part was that he didn't have to stay overnight. He starting smiling so I know he was excited. (You can read more about the botox injections here and here.)

That's all for now. Our lives can be pretty boring at times as this is what we do. Caregiving isn't very glamorous but there is something to be said for being together and being able to help someone. Sometimes, when things are hard, it's just nice to have someone to go through life with; I am lucky that Dear Son and I can do this together. He's a great kid and I wish it were different for him.

A Good Place

I got the call last night from a nursing friend of mine, that a woman at the Respite House had lost her disabled daughter. The daughter, now forty, died after the family put a DNR in place, refusing to vent her for a second time, after a serious bout with pneumonia. The daughter had been hospitalized since Thanksgiving. She told me of the agonizing decision this woman had to make, and how she wanted her entire family with her for support, because she didn’t feel like she could make the “right decision.” She kept saying that “she just wanted to be a mother”; she didn’t want to have to make this choice. I don’t know the woman personally, but only know of her, since she ran the Respite House prior to Dear Son staying there last year. I couldn’t help but feel great sadness for the woman, almost as if losing my own Dear Son, since I know full well, what the mother had been through.

The problem with severely disabled kids, is that you love them too much. You love them first for their beauty, next you love them because you are compassionate and the hand they were dealt doesn’t seem fair, and then you slowly begin to put yourself in their shoes. Once you do that, it’s all over because you will forever put yourself in their shoes in every situation. As a mother, you then try to make their life easier and pretty soon, you are joined at the hip. You know they can’t get through their day without you and you can’t get through your day without helping them. You essentially, put all of your eggs in one basket. You know that’s not smart, but you do it because as a mother, you can’t do it any other way.

With Dear Son, I see him struggle every day. I help him through all of his daily tasks, from rolling over at night, changing his diapers, giving him his meds four times a day to pushing the button every two minutes on our little Christmas House so he can hear the music. It’s one of the few things he enjoys so I can’t help but do it. I work part time so I can care for him, thus giving up a full time corporate job, all the money and the lifestyle that comes with it. But that is my choice.

You never mind though, because you know they are taken care of. You see what happens when they miss their medicine, so you make certain it doesn’t happen. Your biggest fear is what will happen when you die. Who will take care of them? How will they survive? Heck, you can’t find daycare when you are living how can you expect to find a place to care for them when you are not around?

And then, at some point, some of them die. You lose the one person you love the most. The up side is that you don’t have to worry about dying before them. The down side is that you can’t live without them. And therein lies the story. You never win. You never win with a disabled child because the up side and the down sides are the same. There is no up and there is no down side. It’s all just a continuum and at any given time you are at one spot or another. And that’s what makes it so hard. You spend your whole life trying to get to a good place. You want them to talk, you want them to walk. Those days don’t always come like you imagine. You want to wake up one day and have them walk. Instead, maybe they can stand in a walker one day. And then, a few months later, they can take two steps. And then, months go by and they can walk in the walker. At some point, maybe they can walk holding your hand for support. What was the day that they could walk? It all gets kind of muddied.

Then, as time goes on, they can’t walk anymore. First, they might be recovering from a hospital visit and they are weak. Then weeks turn into months and pretty soon, they diagnose them as having a progressive disease. Then there are the hospitalizations, the pneumonias, the ventilators and then the DNRs. Every time you turn around, you are trying to get to a “good place.”

I was thinking the other day, about Nancy Reagan and how difficult it must have been to watch her husband fade away. I thought about my own Dear Son and how different is it now, when I look at his pictures from a few years back and see all of the excitement, the emotion and how he could walk on his knees. That seems like a good place. I thought about now, how he can’t even stand up for a second so I can put him into the car or how he needs me to help him roll over at night. Maybe Dear Son having a progressive illness is God’s way to make it easier for me. If he takes Dear Son now, maybe I’ll flip out from loving him too much whereas if he takes him away slowly, I’ll know when the time comes, that he is where he should be, that he’s in a “good place.” Somehow, I doubt though, that it will feel very good. It’s like spending your whole life flying in a snowstorm and having to land the plane. Your choices are to land in a vast forest, a ravine or a swamp filled with quicksand. In the end, you are still looking for a good place. And maybe that’s why she said she “just wants to be a mother”; she’s tired of flying the plane and just needs a good place to land. In the end, the plane lands and you have a gaping whole in your heart, where you loved too much.