what i mourn

I was talking recently with Eric and was referring to a few blogs I had written recently… but he mentioned he hadn’t read them even though I post them on facebook… then he encouraged me to post them here. If you’re on facebook and you see my blog- I might duplicate stuff over here… hope that’s ok 🙂 Also, The Village is still an intimidating place for me… we’re new and yet we’re old- but we aren’t known well and we don’t know you all very well… yet. But I do enjoy sharing my thoughts and I love to hear yours. So I might start posting some more on here. Hope that’s ok. Also… when I write, I write assuming some things will get shared and people won’t know my story- so I give details that many of you are well aware of… but that’s why I do it.

Recently my friend asked me how I was doing- I must have looked a little ragged. This mom of 3 little kids is never ragged, but always tired- or something like that. I began to tell her about the conference I have been attending. For the last 3 months I have driven to Phoenix for a weekend to learn about different facets of disability advocacy. The conference has been better than I expected. The people who they have come in to do the trainings are from around the country and on the front lines of progressive advocacy for and with people living with a disability. Apart from the long hours of inhaling information I am surrounded by 23 other people who love and fight for someone with a disability. We have shared some really intimate stories and poured our hearts out to one another in attempt to not only gain information, but to encourage one another to keep on fighting for our loved ones. I shared with my friend that it is exhausting for me to hear all those stories and learn so much information and then return to the normal life- so she was right to note my raggedness. I also shared with her some of the daily struggles I have in raising a child with an intellectual disability. She told me about a training she is doing on mourning. She is learning to mourn some specific things in her life- putting words and feelings to things that are out of her control so that she can grieve those things. She asked me if I have mourned over having a child with a disability. I really couldn’t answer her question right away. I stared off into the distance at all the kids running up and down the play structure- laughing and screaming.

She proceeded, “You don’t have to tell me, it’s ok.”

I said, “I really don’t know how to answer that question because he’s alive and he’s a joy. I don’t know that I mourn his life.”

From there the kids needed me and our conversation was over- well between us it was… I have now spent the last 4 days constantly reflecting.

I started with the question, “What am I mourning” Do I mourn the absence of perfection or do I mourn that I ever expected it?”

Like the majority of first time expectant moms I expected my baby would be without a genetic abnormality. I expected to carry my child for 9 months, give birth, and have a beautiful Crawford baby. I do remember a written prayer in a journal that I prayed for several months which pleaded that God would prepare me for the child born. Now I know that God was preparing my heart for Bentley- teaching me to pray for the unexpected, but like the abnormal ultra sound at 20 weeks I didn’t actually believe I’d be faced with a child with a disability.

As I reflect on my pregnancy with Bentley and on his life I do wonder if what I mourn is that I expected him to be the typical child and not whatever God gave me. Is it wrong to want a child that doesn’t have a disability? Is having a child that requires more time or medicine or more of anything the unwanted child? What should the expectant mother long for?

One of the greatest challenges I face raising a child with Down syndrome isn’t my child, but the culture around me. After Bentley was born many people would say things like, “I’m so sorry.” I always questioned this… why are you sorry? I have a beautiful baby boy with a life ahead of him. Be sorry for loss of life, but not this life. The idea that I would bring a child into the world and you would offer an apology for his life is so painful. This experience paved the way for our culture’s lack of acceptance and appreciation for those with disabilities.
The next challenge was finding a preschool for Bentley. I called all the preschools in Detroit and Grosse Pointe that I was interested in and they all said I needed to send him to the local classroom for kids with developmental disabilities. I refused this offer. I finally found a Reggio Emilia inspired preschool that not only accepted Bentley without him needing an aid or additional help, but loved and accepted him as a child with something to offer the world.
Again I was faced with the same challenge entering the elementary years until I found the Boggs School.
And again when we moved to Tucson I started the whole search over again. I called a local private school that has a wonderful curriculum and opportunities for kids and the receptionist on the phone said, “Well, we’ve never had anything like THAT before….”

As a country we are failing our people. I’ll never understand the reason to segregate people. My son was born into a family with a mom and a dad and a brother and a sister and he is part of our family. He does all the things we do- so why when it was time to start school is all the sudden expected to be segregated? How is that good for him or other kids? Studies show that the early elementary years need not be academic- it’s all about social development. So if the early elementary years are based on social development why can’t all kids be together? We know that segregating kids at young ages only leads to more segregation as years go on. How many friends do you have with a disability? I think a huge part of this gap is because we are segregated through our education- not because of our differences. I have made new friends along the way since Bentley’s birth and I fully appreciate their contribution to my life. Jean Vernier and Henri Nouwen have written some life changing books on their experiences in communities of people who live with and without disabilities. If you’re wondering where to start, I’d start there. We must change our thinking before we change our hearts…. or maybe our hearts change our thinking.

So when I think of mourning it’s not my son that I mourn. I do not mourn the absence of his intellect. I do not mourn that he may live with us forever or that he may need more assistance in life. I mourn the labels- our culture’s decision about the value of life. I mourn that 92% of moms who are pregnant with a child with Down syndrome abort. Yes, 92%. I mourn that I have to fight to find him a school where he is with his peers. I mourn that people apologized to us when he was born. I mourn that our country has moved jobs oversees and into computers to save money and therefore his job opportunities are effected- along with millions of other people. I mourn the medical world who diagnose children on a daily base with grim expectations. I mourn the rejecting world in which I am trying to raise Bentley- but I do not mourn Bentley.

The struggle, the pain, the exhaustion lies in trying to help others see him as having a valuable life. Bentley’s life is just as precious and hopeful and joyful as the life of his younger brother and sister. So the next time you see a person in a wheelchair, or with some tubes, or who has the facial appearances of Down syndrome or another chromosomal abnormality or who is behaving differently because they have autism- don’t look over in sorrow, but look and smile- because you’re looking into the eyes of a person who has value- a person who loves, laughs, and feels- and whether or not you can see those things in that moment doesn’t determine their existence- and that life- whether it’s like yours or different- is special and it has equal worth. So smile.

To answer your question, my dear friend, yes, I do need to mourn and I am learning how to mourn- but first I had to determine what I was mourning… and without your questions and pursuit of my heart I wouldn’t have realized so clearly that it isn’t my son and the absence of “perfection” that’s a loss- however, it’s a society that has put value on some lives and leaves others to suffer in isolation, a society that apologizes when it should celebrate, and instead of looking away, should smile.

“And I’d choose you; in a hundred lifetimes, in a hundred worlds, in any version of reality, I’d find you and I’d choose you.”

Kiersten White, The Chaos of Stars