On January 29th 2009 me and my fiance welcomed into the world our first child together. A beautiful, healthy (or so we thought), happy, baby boy. Everything during the delivery went normal. She did beautifully for a first time mother, and neither of us could have been happier to have this wonderful miracle join our family. The first day Colton nursed perfectly, he fed well and all was great. The second night however is where Katie (my fiance) believes is when she noticed the first issue. For on the second night Colton just wouldn't latch. No matter the position he wouldn't latch on. The nurses and doctors said "It sometimes happens here's a bottle pay no mind". So we didn't think much of it. Now looking back we wish we would have pushed for more answers.
As Colton continued to get older through out the months we noticed that he just didn't seem to do the things other babies did. When we brought what we thought should have been milestones that he was missing up to his primary care doctor he just said "he's stubborn, give him time". Well once again we did as the doctor asked, we gave him time. Now keep in mind when I say that we noticed him doing or not doing things, it was like when he would hold a bottle. He would literally hold with his left hand but brace the bottle with his feet. When he would start to crawl, Colton wouldn't get on all fours to crawl. He would literally army crawl. This was pretty much the last straw for us as Colton was approaching his 1st birthday and was in our opinion, way behind others his age.
Let's just say, Katies maternal instincts were completely correct. Even after bringing up the little things we noticed about his development, his primary care doctor continued to say "you can't judge your child by what others are doing". Wow, he couldn't have been more wrong. A family member told us about a clinic in our local area that was free and specialized in child orthopedics. So Katie called, made the appointment and took Colton to see a new doctor, with a fresh perspective (and also at a different hospital association than his primary). This is a day I will never in a million years, forget. See I wasn't able to be at this appointment as I was at a job where you just didn't take time off for things like that. So Katie being the wonderfully strong woman she is, took Colton up. Only to get what could possibly be some of the most heart wrenching news any parent can get. This particular doctor as I said was a Orthopedic Specialist. However after seeing Colton for literally 2 minutes told Katie "Ma'am, I can't say it with a 100% certainty. But I believe your son has Cerebral Palsy. You need to take him to a neurologist". Yeah, I'm still not sure how she didn't totally flip her lid on that one. But I remember her calling me and telling me she was going to come by my job and that we needed to talk. I could tell as soon as I saw her she had been crying and that the news wasn't going to be good. When she told me the news I could feel the tears swelling and the typical, "why him, why us"? questions beginning to form.
The doctor helped us with a referral and we made the appointment for a pediatric neurologist in our area and of course, this time I wasn't going to miss the appointment. I needed answers! I wanted an explanation and I wanted it now! The neurologist of course scheduled the MRI and we received the confirmation that we so badly wanted to deny. "Yes, Colton has Cerebral Palsy. The MRI shows that the left side of the brain suffered a stroke either shortly before or right after birth". They told us this part with a certainty since his brain was fully developed. But this is also when we found out that this little "stubborn" boy, truly was a miracle. See the MRI also showed what caused the stroke. A blood clot developed in the main artery on the left side of his brain. And by what can only be described as a miracle, stopped just before it reached the center of his brain which in most cases would have been fatal. So with us finally having an answer, we had many more questions. Such as what is our next step to give our child a normal life. This is when the neurologist literally ripped our hearts out. She informed us that with the damage to the left side of his brain, and it being "dead". That we shouldn't hold our hopes up. "With this type of damage don't expect him to walk, talk, feed himself etc". Talk about leaving a parent absolutely speechless. But once again this is where Katies strength amazed me. She demanded to know what we could do to try and help him. The neurologist suggested that we could try occupational, speech and physical therapies but that she couldn't see them making a whole lot of difference. This is where I can say, Doctors definitely don't know everything.
Immediately Katie went to work to find him the therapies that the neurologist suggested we could try. At this point Colton is right around 16 months old. And this is where I learned the true strength of not only Katie and Colton, but also myself and our family. The therapy sessions weren't easy in any way shape or form for any of us. Two parents who were both working while trying everything they could to make sure he made it his two therapy sessions twice a week and 30 miles away. But there was no way any of us was about to give up. And that included Colton. This little boy who army crawled everywhere, and couldn't walk or talk surprised us all. It was Memorial Day weekend at a campground when out of the blue, Colton took his first steps. I'm not even going to lie, there were tears everywhere and from everyone. Not only was this kid who according to the experts, wouldn't walk..walking. But he was walking on some of the most uneven ground possible. And he was doing it over and over. Bam!! 1 goal down. We continued Coltons therapies for a very long time going twice a week. They started working on his speech and flexibility. It wasn't long before he started talking. Bam! another goal down. Now the tough stuff, getting him to understand that even though he was most likely born right handed, he would have to learn to do 98% of things with his left. This of course we are still working on 7 years later.
In the last 7 years I honestly believe I have learned more from my son than he has from me. He has shown me a strength beyond anything I could have believed any human can have. He goes to school everyday, he plays soccer with his friends. His smile as goofy as it is, lights up a room. Don't get me wrong we still have our bad days. He does tire easily, he does have to take medications to help control the grand mal seizures that are common with his type of Cerebral Palsy. But he lives. He lives life to the absolute fullest that a 7 year old can. And love? My god, this kid doesn't have a hate bone in his body. It's amazing to see someone that young who has been through so much not be bitter or spiteful. When people ask if I have a hero, I quickly respond that I do, and it's my 7 year old son. Because he's shown me that whatever I'm going through and how bad it gets. That there is always a way to get through it and be happy, and to love. As far his mother, all I can say is "thank you god". I couldn't imagine any other woman being as strong as she has through all this. Her maternal instincts have been spot on with him every single time. I couldn't have asked for a better mother to my children or partner through life for me.
And for those that read this and that know us but can't figure out why after 8 years together, 7 of them being engaged. Why we aren't married, well it's not because we don't want to. See with Coltons condition, health insurance (even with Obamacare) is almost impossible to receive. Because as far as insurance companies are concerned he's just as bad as a child with cancer to insure, Katie was literaly told the lifetime care is just too much, sorry. So yes he is currently covered by the State of Illinois ALL KIDS plan as it's the only sure fire insurance he can receive that will cover his full medical needs. If we were to get married at this point in time he would lose his insurance due to my income. It's just one of those sacrifices we have had to make for the betterment of his medical needs. Trust me I'm not a fan. But it is a situation that until the state and the insurance companies realize they are screwing families that want to be truly complete, can't change. At this point we see it as nothing but a piece of paper. And with everything we have gone through as a family our love for one another has done nothing but grow. And in our eyes we are married, and happy as a family with our Cerebral Palsy hero.
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