Our family is lucky… like damn lucky… to be in the position we are. How can that be? A medically complex/medically disabled kid, job loss, and multiple other laments I’ve written about and journaled about. For everything we’ve fought for and been through with Bowen, he is a resilient and happy toddler. Every day is hard and a lot of days my anxiety about finances and my personal career path can get the best of me.
When I read through parents posts about their kids, and when I am doing research for a blog post or my own personal quest for knowledge, I often have to stop myself and think about all the good we have in our life. Yes, Bowen is tube fed and he throws up a lot and he has a lot of scars and he can’t drink or eat certain things… but the blessing for our family is that he will grow up to probably have a pretty “normal” life. That’s our privilege in this- we get to be normal a lot and we get to look forward to a future that may look “pretty average”.
Of course, it is a different normal… I get that the majority of families don’t have IV poles in their houses, or drawers stuffed to the brim with syringes and medical supplies. But it really could be so much worse. Cognitively, Bowen has no deficits and in fact, seems smarter than the average bear when it comes to his development. He talks in 3-4 word sentences, can count to 4, and is meeting the majority of his milestones as outlined by the CDC and the American Academy of Pediatrics. For many families who have in-part some of Bowen’s same diagnoses, they add in factors such as Autism Spectrum Disorders, ADHD, Cerebral Palsy, seizure disorders or other genetic conditions that add a great deal more care than what we do on a daily basis. The future for these families is muddy at best and many can’t or don’t even have the bandwidth to see past a few weeks/months or even a year.
I recognize that we had providers from the earliest days of Bowen’s diagnoses, who told us about state-funded programs we could qualify for in the future. We knew about the ability to be a paid caregiver, even before we even knew how severe Bowen’s condition was. I recognize that families who are in minority demographics or who do not have English as their first language often miss out on these opportunities or do not learn about them until much later. I recognize that our access to a pediatrician who listened to us from the beginning is also a privilege and I read many stories from parents who have been fighting for years to get doctors to listen to them. And to go even further, I recognize that the ability to have reliable transportation to get to our appointments is also a privilege missing for many families who need access to their providers frequently.
In 2021, the CDC reported that 1 in 44 children will be diagnosed with ASD and 1 in 6 children are diagnosed with a developmental disability as reported by parents. From personal experience, I can say that dealing with a developmental or intellectual disability has been far harder than a medical disability. My sister, who is now almost 22, has an intellectual disability that was “due to unknown etiology”. My mom and I have had many conversations about her versus Bowen. I can tell you that the uncertainty surrounding development or intellectual disabilities seems to outweigh some of my uncertainties around Bowen.
Which brings me to my next point of privilege- having a diagnosis. Many parents whose children undergo diagnostics can tell you that finding something is almost a relief. It makes you feel “less crazy”. Having a diagnosis can be empowering. You can connect with those around you and find groups who share similar experiences. When you don’t have a reason for something going on, it feels like drowning. Drowning in “why’s”, and “how’s” and different scenarios that sometimes make no sense! Moms feel crazy even on the good days- add in components of symptoms that are completely unexplained by modern medicine and you have a recipe for the looney bin. (figuratively speaking!)
While we don’t 100% know what the future looks like for either of our kids, we do recognize that our situation isn’t half bad and we have a future we can plan for. Being able to see the glass half full hasn’t always been easy, but as I have immersed myself into a world of special needs and medical complexity, I hope others can see that myself and our family is fully aware of what we do have. I hope from this place, my goal is to help those that find themselves on the other side of the spectrum.
What sort of support do you feel like you need from your community? Is it helpful to day dream about all your child will be or is this a point of pain for you?
Somewhere In Between 