I started this blog because, as an intelligent, educated woman turned full time mother, I needed something to do. Something that didn’t involve diaper changing, snacks, packing the car or appointments. Something for me. But maybe also something for you, too. I love making things and always have multiple projects on the go, but I also have one project that is constant, never ending, and always changing.
See, my son has special needs. William turns three in two short weeks, and it has been a long haul. A long three years of worrying, praying, hoping; soul crushing days and diagnoses that make you want to just step out onto the highway and get run over by a feed truck. Because some days that would be the easy thing to do. It has also been a short three years of joy, proud moments, unconditional love, unexpected little boy hugs and new discoveries of both child and parent.
From the second William was born, our lives changed, just like every other parent who has a new baby, however ours changed in a much different way than expected. While some parents find out during pregnancy that their child will/may have special needs, we did not. There was nothing wrong with William in utero, he instead suffered a catastrophic birth injury. I could go into excruciating detail, however we can’t change the past and there is no point on dwelling on it, it does no good for anyone. Perhaps in a later post I will get into it, but not now. The point of this post is to get it out there and explain to other nerve wracked parents in a similar situation, Googling “birth injury”, “cerebral palsy”, “ANSD” and the like, that you are not alone, and we can talk about this. Everyone’s story and realities are different, but we are all concerned parents and that brings us together.
The result of William’s birth injury and subsequent medical problems are as follows: William had acute kidney failure, has been diagnosed with Cerebral Palsy (CP) and has bilateral hearing loss with Auditory Neuropathy Spectrum Disorder (ANSD). William’s kidney situation is stable and the outlook is encouraging. He sits independently and walks with the assistance of a walker type piece of equipment, but his balance is poor. He recently got leg braces to wear while standing, and they are helping him with stability. He hasn’t begun to speak yet, but does make all vowel sounds and some consonant sounds, and does understand what people are saying to him. He has a hearing aid and a cochlear implant to help him hear. What all of the above does not describe is William as a little person. He is charming, affectionate, curious, stubborn, smart, determined, and, as horse people say, has so much try. He is making progress every day and has taught me so much as a human being; things I never thought I would learn, and things I didn’t know I needed to learn.
It would be very difficult and likely incomplete to go back three years in time and write about all the steps taken, appointments gone to, information absorbed and lessons learned along our journey, so I think it’s best to just start in the here and now. I guess my game plan is to write about the things we are doing as they happen, and possibly go back in time and explain how we got to these steps if it is useful. That really is my goal here, to be useful. There is a lot of medical information out there on the interwebs, but not much from people who are living with these conditions. Perhaps they are reluctant to share… there is a fine line that I too am struggling with, how much information is too much? Most likely they are busy with all the same appointments and extra things we are doing, on top of the business of just actually getting through daily life. Believe me, I understand. Maybe they lack the courage to think their stories could make a difference in someone else’s life, or think “no one will actually read this” like I do. But- I’m going to do it anyway. Thanks to my friend Ang for making me realize this!
So, I hope that if you’ve Googled and ended up here, you can find some comfort in knowing that you aren’t alone, and that I really do know what you’re going through. I hope you find some useful information, and that you will possibly share your experiences too. Thanks for reading!