Of course, my Dear Son wasn’t normal. He wasn’t normal on day one or any day after that. He had breathing difficulties and turned blue within the first twenty four hours. He had “suspected seizures” on the first day and the journey began.
The first few years were a bit of a blur. It was a lot to learn the whole “system” of healthcare. I remember going into a school in one of the early years, when he was in elementary school. They were getting ready to transition him to the regular school system and I had asked to see several classrooms/schools so I could better understand the placements being considered. I asked to see two of the schools they were considering that had children “below” Dear Son’s level and two schools “above” his level. (When I say “schools” they were actually different classrooms although all of them were also located in different schools.)
One in particular was quite scary. It had a lot of retarded or severely delayed children there. It was past capacity and the day I visited seemed very short staffed. I remember walking in there and thinking it was like a pediatric version of “One Flew Over the Cuckoo’s Nest.” I was totally scared. There were kids running around, one was standing on his head, and it was total chaos. There were about forty to fifty kids in the room. One little girl came up and grabbed my hand and held it. I wanted nothing to do with this group, but I couldn’t not hold her hand. All I could think about was getting out of there fast. Looking back, I think there were many children with behavioral issues in addition to their mental disabilities. There were some with physical disabilities as well but I knew it was not the place for Dear Son.
Over the years, I became more comfortable being Dear Son’s mother. Make no mistake, I always loved Dear Son, I had never been around anyone disabled so I didn’t know what to do. I wanted to be a good mother but it takes a while to learn how to do basic things. Prior to having Dear Son, I never had any desire to work with Special Needs children or adults. I am not sure that I still do, however I am no longer afraid of them.
Fast forward to last year when Dear Son was at the Respite House. On our last day there, there were three mentally and physically disabled children receiving therapy in the main room. As I looked at each child, I saw how beautiful they were. I saw that first. I looked at them and for the life of me, I thought they were perfect. Although they had issues, none of that mattered anymore. I thought about that a bit and realized it took me sixteen years to get to that point. Maybe I was there sooner, who knows. But I can certainly thank Dear Son for changing all of that.
So it was really interesting to watch Lifetime’s, “The Memory Keeper’s Daughter.” It reminded me of the time, when Dear Son was born, and having a child with Down Syndrome or a disability was something no one wanted. I mean, why else are we testing for that?
As I watched the movie open, I saw the baby and thought of how beautiful she was. I remember the baby looking the nurse in the eyes when she was going to drop her off at the home. As the movie progressed and they visited the “home” it was upsetting to me to think that disabled children were given away or are still “put away” in a home. In fact, it’s still a pressure today, to think about “putting them in a home”, something I never want to do with Dear Son. The movie hit home with me and was very difficult to watch because now after having a baby with disabilities, I can not for minute, imagine life without Dear Son. During the commercial, I went into his room, to check on him and whispered, “I love you” to him.
All of this made me think about how different it is today. The internet has changed a lot of things. All of the bloggers with special needs children, especially the younger ones, don’t realize how lucky they are to have the internet. Back when Dear Son was born, there was nothing. It was much more isolated back then to have a child with disabilities. It’s not like you could “google” anything when you had an issue.
But more than that, is how time is changing. Recently, my niece and I began having more e-mail conversations surrounding pregnancy, now that she is pregnant with her first child. She is a beautiful young woman and it’s really wonderful to see how excited she is about this baby. I think she has taken a picture of her pregnant belly nearly ever day so far, or so it seems. In every picture, her face is absolutely glowing with excitement. She is smiling ear to ear and is so happy. A few weeks ago she told me she was expecting a girl. In addition, she decided to name her Gwen. She began referring to Gwen in all of the e-mails. I thought that took a bit of the fun out of things and that I always liked it a bit more when people didn’t announce the sex of the baby until it was born. I didn’t say anything though.
As the weeks passed, we continued to write. I opened one e-mail recently and she mentioned that she was no longer going to have any more tests done on the baby. She said it really didn’t matter anymore because if she found out she was having a baby with disabilities, it wouldn’t change anything. She was already in love with Gwen and nothing would change that so she figured she would just enjoy the remainder of the pregnancy. I should also mention to you that her husband has MS. And then she said something quite interesting:
“You know, I think by naming her already, it has made her a "real person" to us. Everything is Gwen this and Gwen that :) I think we have bonded with her that much more just by naming her. She's no longer "the baby" or "it," she's our little Gwenyth Faye :) That's why when the counselor was telling me about all sorts of other tests we could have done, I decided against all of them. I had the initial screening and the 20 week screening done, and everything looked fine. I have no interest in testing my blood to see if I am carrier for cystic fibrosis. I'm not the type of person to say, oh you know what, this baby isn't going to come out perfect so let's scratch this one and try again. I truly believe that God doesn't give us more than we can handle. I like to look at obstacles like opportunities.”
She went on to talk about the changes her husband made when he was diagnosed with MS and how those were positive for them. Then she wrote,
“I know at times, more often than not, it might get overwhelming caring for Dear Son, but you're so good with him and you love him so much. I have never seen you get frustrated or yell at him, not once. I'm sure you may feel frustrated at times, but it's so nice to see how you take such great care of him. You have never once acted like Dear Son is a burden on your life. I love that you are so passionate with all that you do for Dear Son. I think it is remarkable.”
As I thought back over the years, I thought that we are finally beginning to change the way people think about people with disabilities. Maybe they are no longer “challenges” but “opportunities.” Or maybe, they are just who they are meant to be, “beautiful babies.” Thank you Dear Son for showing me the way.