Big Complicated Feelings

Grief. Anger. Joy. Fear. Love. Hope.

How is it possible to feel all of these all at the same time? I am not sure.

Sometimes when I look at Isaac I feel all of these all at the same time. All of them all at once hitting me in the heart like a sucker punch. I fall to my knees, sometimes I cry. Sometimes I cry myself to sleep at night. Sometimes chopping onions gets the waterworks started, driving alone at night coming home from work and the song 22 comes on and in my head that song is all about 22q deletion syndrome and not a group of spoiled hipsters, or in church, or at the park.

I have become a master of hiding my tears until I am alone.

I am not crying for sadness, not really. It is complicated. At the park, Isaac starts playing or conquers a new task, a big one, and then a kid half his age barrels past and does it with ease. I am proud of Isaac but sad for him too, that he has to work so hard to do what most kids take for granted. I love him so much! He's so brave and patient and wonderful.

Then I get terribly scared for him. He has a genetic defect.

Suddenly it seems like all the sci-fi movies I watch are all about mutants with genetic defects and how basically society wants them all locked up and killed, even if they look or act normal. Alphas. X-men. Gattica, Brave New World.....this list is long. People in our culture are afraid of genetic defectiveness and medical difference. There was a facebook page that was all about killing autistic people because the page claimed that they are all murderers waiting to happen.

History is pretty clear that every so many decades people, normal everyday people get behind the idea to kill off the medically fragile or disabled.

My son has a genetic deletion. This strikes fear in my heart for him like nothing else can. His deletion does not make him look different, noticeable, so he can pass for normal eventually if he learns to talk, the mere idea of this makes me queasy to even think this way.

This is why the awareness campaigns make me nervous. We, the caretakers and families of these fragile children, are we making them easy targets by tagging our cars and ourselves with pride ribbons? Are we? Does the general population need to know about the hundreds of different defects possible in children? How does that help? Why not focus the energy on the folks making the diagnosis, the medical colleges and nursing schools? How is a jaunt around a lake helping?

Then my mind comes back to the park, and the joyful noise of my children playing and laughing and living in the moment, and I have lost being in that moment because my mind has drifted into the lost sea of what ifs and worry. I need to anchor in.

This is where my faith comes in. I pray to a God that is kind and is love. I pray that humanity is moving towards a way of life that will protect my children and their children, embrace their fragile difference, and participate in the joy that they create. My faith that God will protect us has never waivered, but sometimes I drift away on the undercurrent of worry.

Jeremiah 29:11 (NIV)
11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

Today Holly and Lily asked if Isaac can play in the snow with them this year, last year and the year before he was too frail and still just crawling and the weather was so severe that I did not let him. The snow would have swallowed him up.  This year he has a snowsuit, boots, and waterproof gloves. He will love it, I know, but I am still afraid of the snow.

Just like I am still afraid of my own society and the humanity in the world swallowing him up. History repeats itself, it is just a matter of when and how. I cannot even watch or read the news anymore because stories of children with special needs pop out at me and if they make the news, more than likely the outcome is terrible. The teenager with Downs being killed by mall cops at a movie theatre, the mother of a severely disabled teenager murdering him and then attempting suicide because there was no affordable care for him, rape, murder, a child with a genetic disorder being denied a lifesaving organ transplant because of her disorder, the list just keeps going and going and we are becoming more aware of all of it. Is that a good thing? Is that the awareness we are seeking?

I am plenty aware, what I need instead is hope and compassion.

Recently I had a conversation with someone I love so much about white deer and she said that it was a genetic defect and they should all be killed so they don't damage the rest of the healthy population. I seriously wanted to vomit and at this moment, maybe she didn't even notice, I cried in public. In the middle of the museum my tears flowed freely. I was silent then I tried to make light of the exhibit and explain that the law against hunting white animals protects unicorns too.... but I was broken on the inside and my heart was shattered.

My heart was broken in to millions of tiny quivering pieces, because that is what people think of my son. Not all people but enough that it makes the world we live in dangerous. Even families in the 22q support group have discussed sterilisation of their children so as not to pass on 22q to another generation.

I blurted this all out to my aunt as we approached the mammoth exhibit. Of course she didn't mean that, that way. That's people. Animals are different. Of course I knew that she would never be that callous to intentionally say something so hurtful, it is her husband Isaac is named for- the fire chief, small plane pilot, car mechanic, ect who also happened to be deaf and paraplegic. If someone said he couldn't do something, he turned around it did it x10 and in their face.

It doesn't change the fact that there are people in our community who do feel this way about our children. Be aware of that and hold guard because there is no registry for psychotic assholes, no ribbon, no walk or 5k, no warning.

That's what is on my mind tonight.