Into The Fire and Out Again, Part 1

A few weeks back I posted on facebook that being a special needs parent was like surviving a fire. It changes things. I had a bunch of panic texts and calls from folks who thought I mean our house burned down. Gah. I should be more careful with my metaphors.

Everything is a before the dx and after the dx. You are stripped bare, burned straight through, and if you come out again, you are a different person. Not everyone survives this transformation, it reveals your core. If you were a nasty, uncaring, horrible person, God have mercy, that will be worse. If you were a parent on the verge of leaving your family, you will. If you had a kind soul, that blossoms,  your too tender heart breaks and never recovers. Everything is amplified.  I have seen women broken. I have seen them rise out of the flames again. I have seen parents who walk away from their children in the NICU. Walk away. Forever. I have mums on the message boards for 22q leave when they decided to abort their babies.

My heart breaks a million times for each of these children. I do not doubt though that these sweet babes are in heaven and I pray their families find peace.

For us, the fire was intense at first and has settled in to a stand by on alert. Isaac's what if's were so scary. We got a phone call from our Neurologist, not a request to come and talk, just a phone call. He told us the results. Told us not to google, to wait until the genetics department could schedule us in 6 months. Of course I googled it, before I was even off the call, I was on the Wikipedia page.

Go there.  See. And think for a moment what that would be like to be told that's what your child has. Try searching images online. The journal entries that state what a limited life your child will have.

Then, go to the facebook communities.

I know the doctors all warn us to stay on the pub med pages, to stay on the "legitimate" sites, but in all reality, those do not give a complete picture. You know what does? The daily lives of families living with it, some with multi generations of it, full grown adults, geneticists and doctors chiming in now and then too. Pictures of the kids on their good days. These good days are by far more numerous than the bad ones. And the children who don't survive? They parents stay on to hold our hands, saints in my book, inspirations to all of us.

When I started out in these groups I callously wrote one day that reading the posts of the really sick kids made me feel scared and anxious, how could I be a good parent like that? Especially when my kid is basically thriving under close supervision (at first we had 4-5 specialists)? I got schooled. I got schooled hard.

I learned more from that simple exchange about words and how they affect people, even people you don't know. How could I be a good parent while scared and anxious? Welcome to special needs parenting. Those things do not negate being a good parent. They just become white noise to your daily life, intensifying at times.

From that point I was more careful about my questions. I was less afraid to share my concerns or weigh in. I wasn't kicked out of the group. This community was compassionate and forgiving and freaking downright amazing. I have not yet met a single other child with 22q IRL (though my husband attended a dinner with several), but these families are who I go to with my most sensitive emotions and fears. Fears about my child's life, about my mothering, about keeping my family from resenting me or Isaac. Being vulnerable. It changes a person.

As I got to know these families, I learned that as adults many 22q children go on to be whatever they want to be. College? Yes. Grad school. Yes. Muscian. Yes. Parents. Darn good ones. Artists. Truck drivers. Teachers......pretty much the spectrum of what ever anyone else can be or wants to be. Yes, some have medical conditions that limit some of this, but mostly they do what they want anyway.

I have come to think the docs should add stubbornness to the 22q symptom list. Tenacity. Will to prove everyone wrong all the time. Trust me it makes for a difficult toddlerhood, oh my, but it will serve these kiddos well later in life.


To be continued......