Saturday, July 23, 2011

NICU - Part 4




This is the fourth in a series of posts I've written covering Channing's NICU story. This will probably be published in 6-7 posts ie it's long! Bear with me.

Read Part 1 here
Read Part 2 here
Read Part 3 here

Warning, this is really tough stuff. If you're looking for warm and fuzzy, close your browser now. . .


This really sucked
I called the Little Light House. This is a local Christian school for special needs kids that doesn’t charge tuition. The waiting list was 2 & 1/2 years out. They said I would have to come in for a tour before Channing would have a spot on the list. I had visited this school before with a friend of mine to hear some of her friends speak about their daughter who has Down Syndrome. So I knew a little of what to expect.

I pulled into the parking lot. I saw all the handicapped parking spaces and vans equipped for wheelchairs and I started having a panic attack. I was bawling and hyperventilating. My makeup was all over my face. Again, it was hitting me. This was real life, my life. I came close to driving off.

I was texting a friend and she talked me down saying “Once you do this, it’s done. You can cross it off your list”. That made me feel better and somehow I pulled myself together to go in. The woman I had talked to initially wasn’t there that day. I had to meet with someone else. I didn’t want to explain the situation to someone new but I did. I took the tour. The staff was lovely. The children were darling. Most of the kids there have Down Syndrome. I remember telling the lady, “I wish Channing had Down Syndrome because at least then we would have an idea of what to expect”. I held it together pretty well until the end of the tour. The lady could tell I was getting emotional. In the middle of the lobby she asked if she could pray with me. I lost it. I started sobbing uncontrollably. She whisked me away into her office. I didn’t want to cry in front of the parents or the kids. I got it together and we prayed. Something, I hadn’t done a lot of since Channing was born. God and I were not on speaking terms.


Family and Friends
I’m not sure how we made it through the next two and half months but we did. Channing did well. She grew and progressed. We weren’t optimistic. We weren’t anything. We just loved her. Still no one really knew what was going on. My two closest friends, Emily and Stephany knew. I burdened them something awful. They kept me alive. They cried with me when I needed to cry and they made me laugh when I needed to laugh. Always, reminding me that Channing needed a kick ass mom rooting for her. So that’s what I tried to be. Fake it til you make it, right? I wasn’t going to hurt myself or anything but I was in a very dark place for a long time. They pulled me out. I’ll love them forever for that.

I remember telling my mom that Channing was going to be “special needs”. Again I couldn’t go into specifics and she didn’t believe me. She said “There is nothing wrong with that baby. Our brains could look exactly like hers but no one would know because no one ever looked”. I liked hearing that. Maybe she was right but in my heart I didn’t really believe it. Her denial over time eventually started pissing me off so I stopped talking about it with her. I talked about it with MG’s parents and they were more accepting. I knew it killed them though. It killed me for them. This was their only grandchild and it was looking like it probably always would be. I felt like such a failure on so many levels.

Part 5 tomorrow. . .don't off yourself yet. It does get better.

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