It wasn't until 2008 when David had his first seizure that I had to get real with myself and the world about the fact that Davids normal would never be the normal that the rest of the world went by. Up until January of 2008, David was on no meds, no oxygen and no tubes of any sort. It was easy to forget that he was anything but perfect. After that first seizure though, I started to realize that I couldn't hide from the reality of Davids condition(s) and living in a bubble of denial was doing neither of us any good. I had to get real, get educated and get on with the business of making Davids life the best it could be. In doing this, I learned very quickly that anything having to do with disability or special needs can be met with miles of red tape, hours on the phone, forms for this, forms for that, a great amount of misinformation even within the same agencies and stress, frustration and the reality that there is no way to go but forward. After all.....YOU are your child's advocate!
At times this blog has sat dormant for months. The reason is, that writing here can be daunting. Never do I write in this blog that I am not keenly aware that someone may either stumble upon this blog or even search it out in hopes of finding some tid bit of information that may help them in their own journey with a special needs child. Knowing number one, how hard it can be to find some forms of information out there and two, knowing how much it helps to find someone that is going through what you are going through (or at least something similar) and how they came out on the other side is so important in this journey. I want people to know that having a special needs child is a gift. It is rewarding and amazing in ways that you never dreamed possible, but it will also be the hardest thing you are likely ever to do and without support and information......it can seem impossible. And that is why I blog about the Incredible Mr. David!
It has been just a little over a month since David had the last surgery at Shriners to correct his hips. In that time period we have traveled about 2,000 miles going back and forth to St. Louis twice. David has had three rather lengthy hospital stays (3 days or more). He has had two round trip ambulance rides to the ER. He has had leg casts on, leg casts off, multiple fevers, multiple mini seizures, a bladder infection, two rounds of high powered anti-biotics, a yeast infection and pneumonia. He has watched the Spongebob Movie at least 3 dozen times, suffers from what I know is cabin fever and he is I am sure, sick to death of only seeing mine and his brothers faces.
Surgery wise....David is doing amazing. His incisions have healed beautifully and he is able to go longer and longer without his stabilization orthotics. He still winces in pain from time to time but I can see real progress with the surgery and his recovery. His legs are so straight and perfect now, with the exception of his right foot/ankle which will likely need work down the line. I can't wait for his physical therapy (PT) to start and for him to start strengthening up those legs. Right now they are a bit thin and unmuscular but I have no doubt that will change down the line.
Starting February 14th, David will be starting something new. It will be the telecommunication with Shriners hospital. We will be able to have him seen by an ortho here and they will telecommunicate with his doctor at Shriners. It will save us miles of travel back and forth and also help if there is an emergency here as he will have a doctor here familiar with his case. There is just no end to the praises I shout out for Dr. S and Shriners. They have changed Davids life and set him on the path towards an independent future. They are amazing and I strongly encourage anyone with a child with ortho or spinal issues to contact your nearest Shrine or contact me for more information on this. Shriners literally creates miraculous outcomes every day!
Life in Davidtopia has taken some strange twists and turns in this last month. It has kept us on our toes and at times......on the edge of our seats. It has been a mix of beyond amazing and pretty scary. There have been a few long naps and a lot of short nights. Slowly but surely I am seeing David come back to his laughing, happy self and after the 14th.....I have every expectation than he is going to be ready to be pushing himself and everyone else to be up and walking.
The funny thing about having a child with special needs is, no parent would ever wish for their child to be born with physical issues, mental issues or both. When it happens though, you learn that the milestones other parents take for granted or that you took for granted in your other kids.....take on a whole new meaning. You adjust your expectation of "normal" and you find yourself so grateful for each new challenge, each new ability and each new day. You learn what is really important in life and what really doesn't matter in the big scheme of things. You learn to fight hard, laugh more and love beyond anything you ever dreamed possible. Then one day you realize that through it all....the long nights, ER runs, hospital stays, surgeries and all the the rest.....that this child has changed your perceptions, your ideals and your world.........and you know what? You wouldn't change a thing!
I love this!
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