The Bottom of Another....Uphill Climb

When you have a special needs child, sometimes it feels like you are stuck in a rut...doing the same things over and over again and gaining little ground. It is not the child, but the situation and at times it is frustrating. Especially when your only desire is for them to have whatever it takes to get what they need to be the best they can be for a full and happy life. It makes it no easier when people stand in the wings and condemn you for continuing to push forward and him for being born afflicted. Yes...I have a life full of those who see the life we live as futile and pathetic....and they have no idea of what we go through day to day! I was even recently told that I was making bad choices financially, that I should just put David in a facility and get a full time job. Then I would have money! It makes me both angry at them for their short sightedness and sad that they will never know or understand just what David brings to my life and those he touches. It also makes me determined that if we must go through all of this, that there is a purpose and that I am going to give him the best I have to give.

So surgery for David is apparently a vicious cycle of post operative issues and subsequent ER and hospital visits. It is frustrating for me and I know miserable for him. Sometimes though....keeping our eye on the prize is the only thing that keeps us going. It wears us all down and puts me in a funk. There....I said it! Sometimes this whole thing puts me in a funk!!!! It is a vast array of dead ends, what if's and maybe's and add to that those that keep telling me I should just give up....and there are times when it is beyond overwhelming. Then I see a light at the end of the tunnel and we are back on track!

In case you haven't guessed, I was in a bit of a funk these last couple of weeks. I have been holding my breath wondering if we would be ending up back in the hospital all the while trying to move forward. It has kept me with a bag packed and ready to go to the hospital all the while trying to find some kind of normal life rhythm again. I find myself lying awake at night listening to him breathe or if I do fall asleep then I wake up the second he moves, turns or rustles his blanket in anyway. And then there was the trip to St. Louis looming over my head. I knew it would be a quick trip down and back again for them to take off his casts and then looking ahead....I was already dreading what might lay ahead in the future as far as "quick" down and back trips. Whether we make it in a day or spread it out over two...the bottom line is that it is always exhausting.

Saturday morning we left at 1 a.m. for an 8:45 a.m. appointment. The whole way there I couldn't help but think ahead to our next trip and the one after that. In the winter not only are we fighting time but also the weather and luckily we have managed so far to squeeze our trips in between weather systems but law of averages says that our luck will eventually run out. When that happens then you simply have to reschedule which can put an appointment back weeks and sometimes months. Not what I want when we are dealing with Davids ability to walk. So by the time I arrived in St. Louis...I was already tense.

The appointment went much quicker than I expected and except for a moment of sheer terror when they came at my baby's legs with a cast saw, all went quite smoothly. David took it all in stride and after a brace fitting and x-rays to make sure his hips were healing well, we were on our way home. The best part though.....we won't have to make the at least 18 hour round trip again for quite some time. Dr. S said he doesn't want us making the trip unnecessarily and so he is going to "telecom" with us. Telecoming is when he hooks us up with a pediatric ortho here in Wichita and they take all the x-rays and keep an eye on David under Dr. S's care. This means we don't have to run back and forth for small things and we will only go back to St. Louis for yearly checks and surgeries....unless Dr. S feels he needs to see him sooner. I could have cried at this news!!!!

The trip home was uneventful and both David and I were exhausted by the time we got in and got settled. Little did I know though....the really difficult part was still ahead for my little guy. Since he was not cast in his first surgery, I knew nothing about casting and apparently being cast gave me a false sense of everything were Davids pain is concerned. While cast and now while in his brace, his pain was/is very mild if any. However, if you pull those braces off and Dr. S wants us gradually to have him wear them less and less, then his pain level goes up.....a lot. To the point of tears. We found this out on Sunday.

Sunday I took his braces off and had him lying in bed. I was busy running around cleaning and I happened to look in his room. He had thrown both legs over the side of the bed and was trying to get out of bed. I decided to try him out in the living room. He was over joyed and Z and I brought him out. He however was not satisfied to sit quietly on the floor and watch TV. No...he was on the move, scooting himself on his tush all over the floor. Not confident that this should be happening, I decided to put his brace on him. That made the tush scoot even easier for him as his hips were stabilized. He spent the afternoon scooting. He obviously over did it. By the time he got to bed he could barely keep his eyes open and he fell asleep immediately sleeping for about 45 minutes. He was then awake the rest of the night....and in pain. 

Yesterday he slept off and on and remained in pain. Luckily I have ALL his original pain meds. I took his braces off yesterday afternoon for a couple of hours but I kept his hips as stabilized as possible with pillows. The problem with the braces is that having to wear them so much....I don't want them to start giving him sores. I also made the executive decision yesterday to hold off home bound school for a few days to let David rest a bit more and get used to this new and painful process he must go through. Although I know he is bored to distraction, both his pain and his pain meds make him tired and he is doing a great deal of sleeping now. Something I am sure his body needs.

The upside to all of this and yes there is one.....is that his legs are beautifully straight. His legs have never been this straight in all of his 13 years. They definitely need to have muscle built up on them but from the looks of it, when he is ready for physical therapy.....they are going to be straight and not bowed which will give him his best chance at walking. I am so very grateful.

I now have no illusions about the next few weeks and months. We are at the bottom of another uphill climb. There is going to be pain for him and tears for both of us. It is going to take a lot of determination on both our parts to get where he needs to be. Prayers will be welcome for both our sakes.

The bottom line is that the cards are stacked against us in so many ways. Financially, physically and at times...even emotionally. Still though we fight. I fight for him and he fights to walk and I have noticed that I am not getting any nicer to those that choose to stand in our way or tell us he can't. I have become very single sighted in a world that sometimes closes in and overwhelms but I have every faith that in the end.....David WILL walk!