Tuesday, April 27, 2010

Mourning Lost Expectations

Our first family photo.

When I came to terms with the fact that The Kid would be very premature (well, I never really came to terms with that until they gave me my epidural) and they told me that he had a 90 percent chance of living and an 80 percent chance of having no lasting problems, my biggest concern was that he would be the small kid in class. The Boy and I are not big people and we both come from short families. I was concerned that The Kid would get teased for being short/small and that he would always be picked last for sports teams on the playground. That made me sad, because I didn't know what to say as a parent to comfort a kid like that in those situations. I didn't even know how to be a parent to the sports all-star kid. I didn't know how to be a parent at all.

When they told me that The Kid had bleeding in his brain, they said that it was very common, very mild, and most likely would go away. After a few weeks (they checked it weekly) they told me that the bleeding had progressed to the point that learning disabilities and sensory disorders were likely and that physical or mental disabilities wouldn't be surprising. Wow.

My biggest concern upon hearing this news was that I wasn't prepared. I didn't know how to be a parent at all, much less the parent of a kid with special needs. I knew that it would be ok. It had to be. There were no other options. I certainly wasn't turning back now.

When I signed up for parenthood I didn't say it was conditional. I didn't say, "I want a baby with an IQ over 100. If I can't have a baby like that, I don't want one," or, "My baby must have at least mediocre sports skills." That would be ridiculous.

The Kid's primary nurse, who we love, told me that no baby, no matter how healthy when born, comes with a warranty around his neck.

I couldn't stand the though of calling my baby's brain "damaged." He was clearly nothing short of perfect. His brain just wasn't like everyone else's.

And yet, the day I found out about the extent of the bleeding, I just couldn't stop crying. I cried all day. I worried that I would get burned out as a mom to a kid with disabilities. I know that all moms get burned out, but I imagined the guilt that I would feel getting burned out because my kid took more patience and I couldn't be perfect. I imagined not being able to have deep conversations about life and science and literature and religion with my child. I imagined that he wouldn't be able to go to college or on a Church mission. I imagined being 70 and my child still living at home with me because he could never be fully independent and there was nowhere else that he would fit in. I imagined the other kids at school teasing him, not because he was short but because he was disabled. That thought made me cry even more. I thought of when I was in school and thought it was uncool to be friends with the kids who were different or "less cool" than I wanted to be. I felt so much guilt and anger. How could anyone not love and accept my child for the amazing, strong, miraculous person that he is and will be? The mere thought made me angry.

I got the news in the morning, before I left for the hospital. I went to lunch with The Boy where we choked back tears around his co-workers. I knew I just had to go see The Kid. I had to see him and know that he was the same baby that he was the day before, and to know that I still loved him just as much and that I always would. When I did see him, he was just as cute. Just as cuddly. I held him in my arms and looked into his eyes and knew that he was the person who he was meant to be and that I was meant to be his mother.

But still, I had to mourn the loss of the child that I always dreamed of before I could truly appreciate the child I had. My dreams and my reality may be very different, but in no way is my reality any worse than my dreams. Just different. And who knows--maybe The Kid will be just how I pictured when I was starry-eyed and pregnant. We don't know at this point. But it's dangerous for my emotional health to count on that. There are no guarantees.

And now the question is how to prepare. How much do I educate myself? I, personally, believe that I will go crazy if I learn everything there is to know about cerebral palsy or mental retardation at this point. Since learning disabilities and sensory disorders are practically guaranteed, I will learn everything I can about those. As for the others, I will wait until I know more about The Kid's condition. Hopefully he will have another MRI within the next few months that will be more revealing. Until then, I'll just enjoy The Kid.

I got pregnant because I wanted a kid. What I got was a kid. A more perfect kid than I could have imagined. Surprises, but no disappointments. Who could be disappointed with this?


Heather said...

Oh man, those grins just kill me. So sweet! Remind me to tell you about a visitor to one of my undergrad classes. It was a mom who explained lost expectations in a way that helped me start to understand the mourning process of the parents of the kids I work with. I later had to transcribe part of the lecture and I wish I had a burned a copy of the DVD from my professor. We love the Kid too!

maefly81 said...

At my MOPS meeting yesterday our speaker bore her testimony and said something that I've been thinking about all day. No matter what curves balls get thrown your way He will never give you a problem that you can't handle. You can handle this. You are such a strong person and a great sister. You are an excellent mom and you are doing the best you can for your little angel. No matter what happens as he grows you will be just fine. You can handle it, or you wouldn't have him.

*Alice Anne* said...

Are you just TRYING to make me cry?!?! He's so cute and so perfect - he's your baby! I sure do wish the best for you and his condition, whatever it may turn out to be when he gets older.