Sunday, April 13, 2008

The Memory Keeper's Daughter

I remember distinctly the relief after my prenatal testing when I found out the baby would be “normal.” No more worrying. I don’t know what I would have done if I found out the baby wasn’t going to be normal. I mean, it’s not like I wouldn’t have the baby, it’s just that it would have been a different experience, maybe taken the fun out of the pregnancy. Back then, in 1991, having a baby with any kind of retardation seemed like a pretty big deal. It was like the “worst case scenario” of the pregnancy world. Since that time, I’ve seen some real “worse case scenarios” but back then, that seemed about as bad as it could get.

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.


Lois Grebowski said...

I saw a portion of Memory Keeper's Daughter. A blog friend of mine sent me an email about the movie. She's a mom to a three year old down syndrome girl (such an intelligent cutie pie, too!).

Unsure as to whether I'd be home to actually watch the movie, I purchased the book that afternoon instead. Books are always way better than the movies! -- can't wait to finish my current read, so I can got onto that one!

I got to see the end of the movie, btw.

My brother was born with down syndrome in 1959, and thankfully, my parents didn't give him away or terminate the pregnancy. I'm not sure if there were tests back then (both parents are deceased). I assume that a they thought a life was a life worth living and most of all, worth nurturing. After all, it was their child.

Almost 50 years later I have a wonderful big brother who I wouldn't trade for the world! He's a joy to everyone around him and a constant reminder that maybe "we normal ones" need to look for positives in the negatives more often.

I could go on for days about how he touched my life...

Anonymous said...

Your post brought tears to my eyes, because it is so much like the journey we've had raising our now 17-yr-old [Angelman's Syndrome] daughter. I am grateful that I happened to stumble upon your blog and intend to be a regular reader.

Karen S in SE Wisconsin

Terry said...

My "beautiful baby" is now a 26 year old man. He has brought so much joy to his family and others, as well. There are, of course, those very challenging times, but I am grateful for all that I have learned from him and the love that we share. I am looking forward to watching the movie...hope it's not too sad. It's hard to watch how the disabled were treated, especially during the time when I was growing up in the 50s and 60s.

Baby Island said...

My own son has Down Syndrome and is 3 yrs old. Tomorrow he starts his first day of pre-school at the local developemental ps. I can't wait.

I had a neighbor who has a child who is deaf say that she wouldn't put her son in the developemental preschool because she didn't want him to be dragged down, I mean he is *only* deaf, not (retarded).

Things like this make me sad. The dev pre-school is for children of all levels of developmental delay. From children that are mearly non-verbal to children with severe disabilities.

One other thought, I admire your neice for her beauitiful thoughts on no more testing. The only thing I would add is that testing is not mearly meant to be about "scratching" a baby away. There are good sound medical reasons for these tests. I was lucky enough to have nothing drastic medically wrong with my son but I know many children with Down Syndrome who because they were diagnosed before birth were prepared for medical challenges that existed.

Thats just my own thoughts on the matter. I don't believe the medical community has all the answers but I do know there are alternative reasons for these tests and preventative care can be the difference between life and death for some of our medically fragil children.

I liked the book better than the movie by the way. I felt ( as a parent of a child with DS) that the lifetime movie made raising a child with DS look like a bit of a fairy tale.

Boy, don't I have a lot to say.. :)

Nice post and thanks for giving me so much to talk about!

Poppy Q said...

Nice post dream mom. I think the internet has such a positive place in helping people feel not so isolated in their lives.

Look at how you are touching other people with your blog and your wonderful writing. Good work girl!

Rambling Round said...

It really is something the way the perception of children with disabilities has gone from burden to challenge to opportunity. I think both IDEA and the Americans with Disabilities Act have helped get them into society so that perceptions have changed to some extent. Of course, the world still isn't perfect!
Your niece sounds quite mature and really ready for a child. But, I would like to clarify the common misinterpetation that The Bible says we won't be given more than we can handle. It really doesn't say that, and there are many, many people who have had to bear more than they could physically and and/or mentally handle.
1st Corinthians 10:13 states:
"No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can stand up under it."

The verse refers to temptation. God will not allow those who belong to him to be tempted beyond what they are able to resist. God always provides a way out.

For more expanation of this verse, check out Wade's World's Jan. 15, 2008 post at
I think he does a wonderful job explaining it.

I enjoy your blog as I have been there, done that and been there and doing that again.

Anonymous said...

Dream Mom ... so true. As a young man with a hearing loss, I think the opportunity is also for people with disabilities to demonstrate they are not a burden on others. Our presence in the world adds value in some way and/or to some one. We can show that we defy medical expert opinions by overcoming or enduring our challenges.

Thanks for your post.


Emily Elizabeth said...

Awwww....tearing up here. What a beautiful post and a great family you have. I am truly touched.

And yes, those of us whom entered the disability world after the advent of the internet are so, so very lucky. Being able to connect with other parents in the same situation immediately made all the difference in the world to my acceptance of my life. After acceptance, even considering the obstacles, came joy.

I am forever grateful for all the people that put themselves out there so that the world could become a better place. Because, for me, it did.

As always, thank you Dream Mom.

Shannon said...

I had a similar reaction to reading the book and also watching it last weekend.

I look at my son and I wonder what would have happened if we had taken tests and had any indication that something was wrong...would we have not gone through with the pregnancy?? That thought is almost too much at times...I can't imagine not being Gage's mom. I am so grateful and honored that my husband and I were chosen to be his parents.

I am also very thankful that I get to raise him in an age where we do have the internet and such...reading all the other special needs blogs get me through some of the hardest days...because as grateful as I am there are hard days as I'm sure you know.

Anyhow...I just wanted to let you know that I related to alot of what you wrote.

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