Invisible, Thoughts on 22q and Being Public With Our Son's Diagnosis

Someone recently asked me if Isaac actually has a disability, and the answer is yes and no and yes and maybe and I don't really know.

This question would have frustrated me even a year ago. Now, I have complicated feelings about this and I am not exactly sure how to explain or respond.

Isaac is doing so well that people from afar cannot immediately spot his struggles. This increases his chances of "passing" or assimilating into a world that others medical differences, both physical and neurological. He's three years old though, so things may change or be more obvious as time moves on.

Early on I had wondered about his diagnosis. He does not fit the typical 22q symptom profile. His case, thank the Lord, is really physically mild, non life threatening. He doesn't have a heart defect, has never needed surgery. This fact alone makes the doctors take a second look at his charts. He doesn't get sick often. We have avoided many interventions that often people choose out of fear when there are multiple options, and so have avoided complications from those more medical interventions. Mostly we are darn lucky at that outcome. We tow the line with it though, ever vigilant.

Being a special needs family is the hardest thing that has ever blessed our family. Every single time something difficult, hurtful, heartbreaking, or scary has happened to us.....something more beautiful and precious and perfect has been born from it. That's how I feel once I got my sea legs about Isaac's diagnosis, once we were out of the abyss of "failure to thrive" and he'll be deaf/never walk/ect stormy seas.

I know that because he keeps proving doctors wrong that this is the basis for questioning his diagnosis or the seriousness of 22q syndrome. I did. I most certainly did. Genetic defect is a dangerous label and one I do not want for him. If I could go back and never run the test, just deal with symptoms, I would. There has never been a time in history where having that label has a good outcome for the person wearing it. Maybe this era will be different, but as a history professor I kind of doubt it. I fearfully doubt it. This is something that keeps me up at night.

Really. More so than last year wondering if he would ever walk. Which he did, right before his third birthday. Wondering if he was really deaf, he passed his first hearing exam at 18 months. Wondering if he would never learn to read and enjoy books like I do, wondering if he'll ever be about to tell me about his dreams with words in the middle of the night, wondering if he understands what the world is really like.

I am grateful for his diagnosis too. Because of it, we are blessed with the most amazing friends. The 22q community online helps connect people. Through Isaac's struggles I met several local people who have kids with medical differences too, including another 22q family, and I now count them as some of my closest friends. They know. They know how much they mean to me because I remember to tell them often. That is something else I learned from them.

I have someone really special, magical, life changing playing outside in my back yard. He's singing to the chickens and sliding and swinging and tormenting his sisters with mudballs (which they LOVE) and when you see him from afar he looks and acts and seems just like a normal three year old. I am totally ok that folks think that. It's his cover identity. If that allows folks to get closer and get to know him and us, maybe that many less people will be afraid of "genetic defect". Maybe that many less "defective" babies will be aborted (yup, I went there). Maybe my fears that history will repeat itself will not come to fruition in his or his children's lifetime.

Maybe.

He is lucky that he doesn't have an obvious, physical medical need that reveals his story like a badge to onlookers. It is much harder for children who do, that's for sure. Much much harder. There are so many more children who have silent diagnosis. Maybe that kid melting down at the mall isn't a victim of bad parenting, maybe they struggle with sensory issues. Maybe the kids crying at the birthday party accidentally ate gluten filled cake and his tummy is cramping. So many families hide their issues for fear that talking, sharing, makes them a target of gossip. That's the last thing anyone needs and when you are in the depths of just trying to survive another day, one less thing to worry about is one less thing. That's one of the many reasons some families become reclusive and silent.

Not everyone gets the gift of our story. Gossip is like Diet Coke. It's fun in the moment, but on a cellular level it is killing you. Getting to know us is like peach pie made from scratch when the Missouri peaches are perfectly ripe. That pie is precious.  This life is precious.

I Don't Always Want To Be In Charge

I admin eight groups on facebook. I started five of those. If there is something I want that does not exist, I usually start it up myself.

Park Day was fading away? Sure I'll take that over. Playgroup for toddler? Sure. Over and over. Sometimes I just don't want to be the one in charge. I want to be the one who goes, takes part, without the added stress of being the organiser.

I am finding writing to be like this. So many people keep pushing me to self publish. No. I just want to write. I just want to make. I want to create. I don't want to start up a poetry journal just to have my own work published. I don't want to e-book a monthly zine. I don't want to market, design, and publicity. I do that already for the farm.

But sending out writing and art only to get rejection after rejection is wearing me down. Vanity press is sitting the corner like a glittering pimp, saying, "Hey baby.....I got what you need...."

No. Just no.

I want to travel. I want to write. I want to speak my work out loud. I want to drink tea in strange places and see the world through the eyes of local artists and minstrels. I want to see the world through my own eyes and then spiral the ink down on paper, click the shutter, and share with the world what I see.

I don't want to be in charge of another project. I am fighting against this current, the tidal pool that brings me back to it every single time. If you want something, make it happen. If you wait for others to find you, you'll die waiting with cold coffee. Maybe it really is the Iowa in me, saying build it and they will come. I have the nails. I have the hammer. I have the dream. I am just so very tired of building always so others can play or learn or rest.

Chad doesn't understand my hesitation either. I have been working for others in one way or another for my whole life, sneaking in time to write or create when I could but less and less and less until ten years had slipped by and I had done nothing but blog about what the people around me were/are doing. I just need the wide open sky right now. I want to see the landscape for a while and just be in it.

I'm not sure what is next.

I'm not sure what I want to be next.

That's the beauty of life though, right? Sometimes you plant the trees and sometimes you harvest the fruit. Sometimes you get your face and hands sticky and purple from berry juice and sometimes you carefully harvest and freeze for later.

Swimming and Growing Up

 After three days of struggling with cat fighting and bickering and outright rudeness, the kids finally got to go swimming.

I struggle with consequence as a gentle, respect focused parent. The kids were rude to strangers. They were openly rude to me while I was trying to take them somewhere they wanted to go. This was yesterday.

Because of this, we went home instead of swimming and they proclaimed I was the worst mother in the whole history of the entire world.

I felt like that too. I hate swimming. They love it. It was too easy for me to just take that from them because I hate it. Still, their behaviour to strangers at the post office was not ok.

We made it home, chilled out, slept it off, and then tried again today. I believe in second chances.

Lily was with us too. She decided to not have her picture on the blog today. She is always asked and I respect that.

We played at the pool for two hours. Full sun. No sunscreen. No sunburns. Just making note of that for the record.

Then we came home, the kids did chores, ate dinner, one went to bed early and the other two are cuddling. It was proclaimed that this was the best day ever. Perhaps I am not the worst mom in the entire world, at least not today.

Humans are complicated. What is true for us in the present moment is all there is. More so for children. I have a headache that is kicking my butt this week and Lily says that I have had this headache since she turned nine. Holly thinks that it will be summer forever. Isaac only has today and watermelon and swimming and trains. We lose it slowly as we get older, stretching our histories and timelines, blocking out grudges and tragedies like flags planted in the rocks of the moon and orbiting around our core sense of who we are. Oh to be three again and just be in that watermelon sweet, joy of cold water splashing moment.

Being a mother, being their mother, I get the gift of this joy. I get to be loved by them and share in their childhood. Oh how I am so very grateful for these moments, even when they are balanced with the moments of their anger and frustrations.

How I Have Been Writing

Words that split open the landscape that is my heart, crack the bone, and tear at flesh.

What I am doing is dangerous. The final advise that freed me though was this: not all poetry has to be memoir. When you mix it up, even the stuff that is can get lost with what isn't and that mystery is all you need. So with that, I have been playing with mythology, memoir, and outright fiction. It is so freeing. So delicious. So crack it all open and feast on words.

Love it.

So that is how I have been writing.

At home, the children are full on into summer and getting wet and muddy and feisty.

My freezer is running low so I am less creative on the food blogging. Perhaps I need to forage the woods and start making berry things.

Our plan for a stay at home summer has been both a gift and a burden. It seems that more time at home shifts more farm errands to me and we're in the car the same as we would be. I'll try harder to slow that down.

The house is getting more and more organised, that's a good thing. 

We've been walking the woods more too. I have a lot of thoughts on the world right now, a lot of gut reactions to the news. I want to blog about it but then writing these things churns my gut and I feel sick. Like I am plugging into a collective disease and dying with the rest of the world. Unplug, focus on the now, and I feel brighter and better.

So back to the woods I go, small hands in each of mine, a picnic, and the wide blue Iowa sky.