Our family survived another super bowl. Our perception of the super bowl is very different than most. Super bowl Sunday, 5 years ago, is when as Gabriels first neurologist put it “the spaghetti hit the fan”.
It is kind of insane to ponder how extraordinary our last 5 years have been. In the blog today I want to give an update on Gabriel and share my own ponderings and thoughts on living a “new normal”.
First, Gabriel is doing very, very, very well. He is a kind and caring boy. He is interested and able to interact with other children, he is learning new things in school. We have every reason to hope that he will be able to be an fully or mostly independent adult someday. That hope comes with A LOT of work, effort, and intentionality on our part.
I wrestle with what to share on this blog, as far as, his abilities. I want to share honestly and openly as a hope for other parents, but I don’t want to post something he might read later in life that would cause him pain. As far as school goes, he is on grade level for somethings and drastically behind on others. He is moving forward and developing in all areas, that is all that really matters to us. A small challenge in the last couple months is that he has noticed he is not strong in certain areas and is expressing things like “i’m not good at that” in a way that lets me know he is worried about it and comparing himself to others. This cracks my heart open because I don’t know how to explain to him that no matter what messages the world sends him, it does not matter 1 freaking bit to me if he is an academic success or not. Crazy words to read from a person who is passionate about education, I know, but I want him to learn news things, develop new skills and grow. I do not care if he ever gets an A on a spelling test (thank God we don’t have spelling words yet….that is going to be an extreme challenge. Keeping 3 letters in his head for spelling is an extreme challenge for him right now).
The phrase “A new normal” as been bouncing around in my head for years now. It has become extremely relavent after the recent and sudden loss of my dad. In dealing with the grief and sadness after loosing my dad this phrase has begun to ring true. It never has with what we are living through with Gabriel. I think it is because there is nothing normal about living with a child with a unpredictable, possibly life threatening disease is normal. Grief over death, however, is “normal” because it is a common human experience. We will all experience death and the pain associated with having to move forward without our loved ones with us on this earthly plain. I am in no way minimizing grief or the pain of loss after death…. For me it is has been the worst and biggest kick in the ass over the last 5 years. However, in grief I am coming to understand the phrase a “new normal”. There are things whether I like it or not that are permanently changed.
My experience, is that when you have a child with special needs the term “new normal” doesn’t fit. There are new routines but these routines feel anything but normal. The majority of the general population, while dealing with difficulties and struggles, are not having to revolve every second of their day around things like:whether an insulin pump is working correctly, or if the newest treatment will really help your child, or how to survive Target when a specific color or scent will truly send your child into a place from which getting them back is literally almost impossible.
Over the past 5 years we have learned, integrated, and researched more therapies, medications, treatments than I care to count. There is no normal in that.
Even when things are good…every single day has scary elements tied to Gabriel’s battle. There is no normal to that.
We have been connecting with amazing people we would have never encountered expect that we are in the same shitty “I have a sick kid”club. One of those many clubs, that no one wants to join and THANK GOD we have each other. But there is no normal in that.
We are planning our entire summer around hoping to get Gabriel into an expensive (all out of pocket), but wonderful camp for children with ADD through our local children’s hospital. It means 8 weeks of intense therapy and school for Gabriel 9 hours a day. There is a requirement to make a commitment to be there everyday, as well as, specific classes for Chuck and I. We are hopeful this will be a great experience for all of us but it is not normal. I would much rather be researching camps, setting up playdates and looking for a great swim teacher.
In the midst of the “not normal” things are O.K. There are many, many wonderful, beautiful, silly, hopefully, peaceful moments that often eclipse the struggles. The spaghetti hit the fan 5 years ago and we are continuing to figure out this marinara soaked life 🙂