Monday, July 14, 2008

Becoming educated

As I sit and pump now, I read. Babies With Down Syndrome is what I'm starting with - one of the books Michael and I picked up yesterday at B & N. It touts itself as "the first book parents of babies with Down Syndrome should read." So that's the one I'm reading first. In order to be the best parent, caretaker, advocate, etc. for Finn that we can, we have to learn as much as possible about DS. And honestly, I'd just rather not know some of this shit.

Here are two things the book says:

- Males with Down Syndrome are sterile. They cannot have children, because the extra chromosome prevents them from producing sperm. Of course, a person with DS will likely produce a baby with DS (apparently, females with DS are fertile), so perhaps this is a blessing in disguise. But still. To know, this early, that my child will never ever be a parent . . . is crushing.

- People with Down Syndrome are mentally retarded. There it is, in black and white, the cold, hard fact. That is the exact terminology used. While the author is not setting out to sound cruel, but rather clinically honest, those words are so incredibly ugly. Probably because it makes very real the shattering of dreams I had for Finn that I didn't even know I had until I realized they were gone. He is mentally retarded. Yes, I know there is a tremendous degree of variablitiy in just how retarded he might be, and only the future will tell us that. And everyone and their brother will try to console me by reminding me that it remains to be seen, he very likely could end up being very high-functioning, yada yada yada. I know all that. But it still hurts like a literal, physical pain in my heart and my gut.

How does a parent come to terms with this stuff? That's what I want to know.


milky1980 said...

I clearly remember the minute the doctor told me that my son was "mentally retarded". I almost clawed his eyes out. Surly he wasn't talking about my beautiful boy who could run and jump and walk. I made it out to the car before I had the world's ugliest breakdown.

Anyways I'm not going to try to console you. It sucks. It still wrings my heart out to hear it or think about it. But you live, and so does your kid. ((())) Hugs to you. The beginning of the journey is always the hardest.

Marie said...

I'm on and followed your story. I'm a special education teacher, and I finished my MEd two years ago. One professor introduced us to a mother of four. Two of her children have DS. She got early intervention services. At the time she spoke with us, her oldest was starting kindergarten WITHOUT ANY SPECIAL EDUCATION SERVICES. DS varies on a spectrum like most disabilities. Not all children with DS are mentally retarded. You are a great parent and will be able to give your son so much help and stimulation. You never know what he may be able to achieve! Please have your pediatrician refer you for early intervention. You'll be able to get physical and occupational therapy, speech, and other support. These supports will help you and Finnian- who is absolutely beautiful, by the way. Lots of hugs. Hope this gives you some hope for your bright little boy! Marie McHenry, Virginia

T-rex said...

You come to terms with it one day at a time. It's reality, just as you said, and it's hard and painful and ugly. We live with a lot of realities we don't like - it is our job, as mothers, to make the best of them and see the beauty where it is, for what it is. Because of these things, everything Finn does is that much more special and amazing. I don't know what more you can do that look at him, for what he is - your beautiful son who you love, who you have all the hope in the world for. A label says nothing of the depth of the person it is applied to.

You know the facts, and you know the person. He will live his life based on HIM, not on a book. It is right, of course, with the cold reality. But thank God we are the sum of so much more than the external factors that define us!

Just give me a cyber kick in the ass if I am making this worse, btw. It's so hard to know what to say, because I see both sides of it!

Jodi said...

I think one of the most important things to remember is that no one expects you to suddenly accept or be okay with any of this. Take your time to rage and question and just wallow in the unfairness of it. Vent here and with your friends about how much it sucks because it does. None of that will change your personal relationship with the person that Finn is or the parent you are or even the way you'll feel about all of this later on in his life. Don't skip the steps or try to fast forward to where everything's okay if you're not there yet. You're not being graded and there's certainly no extra credit for fast you get to the end of this process.

Imamamma04060809 said...

I just wanted to share :) Now that I have been folowing your story I wanted to tell you about the teenager with ds at my local store! He is the nicest boy EVER! He goes to the local high school and is in 11th grade and does normal classes with the other kids but has some extra help when he needs it. He also said he goes to the sylvian learing center. He also works after school and on weekends. He pushes the carts in and help customers! You can't even tell other than he has the face which is so CUTE! He is so nice. He says he wishes he could drive but riding his bike makes him happy. He even gave me a hug and said bye after helping me. He is a normal teenager!! I hope that your story ends up like that. Your son is so cute and you are so loving!

Your husband and kids too. I wish the best and can not wait to see any updates!!

AudraO said...

Hi Lisa, I really understand the pain of reading "mentally retarded" and those words are very painful to read as well as the "MR" abbreviation often written in reports. The first time I heard those words in reference to my son I had a horrific reaction. Many years later, those words still sting, but they do not *define* who my son is and they will not define who your son is. Your son is and will be more than his diagnosis because after all they are words, they are not "him". ~huge hugs hun~ Still thinking of you!~Nayaudo aka AudraO

tinyscrafts said...

Lisa, you are doing great!
Please sit down and rest. You are making me nervous. I guess Sue is probably up in your biz and giving you whatever you need floradix or whatnot.. LMK if you need anything.
I'm so amazed by this tribe you're a part of. Friends help.
That is some milk stash girl!!!!!! OMG!
He'll be out of there soon. I can feel it - Tiny

Karly said...

Everyone gets that book and it's a terrible one to give to new parents (in my retrospective opinion). You will have so many specialists informing you about the possibilities of having a child with Down Syndrome...having to read it is kind of overkill. Roadmap to Holland is a great book, as well as Gifts. Roadmap is a very honest look at the dark as well as light moments.

amy said...

Lisa, I am also from preg. org and have gotten to know you over the months through the large families board. I really don't have the words except to say that I am very sorry that you are going through this. Your writing is beautiful and I cannot believe your strength. Finnian is just beautiful with all of his blonde hair and I know we have never met but you and your family are in my thoughts all day.

Anonymous said...

I've been following your blog daily and thinking of all of you.
I hope that today goes well and you are able to take Finnian home with you. I can completely see why the time constraints are adding tothe stress of BF. You do just need to lay in bed with him and have long "nurse in"
I can only imagine the toll this has taken on your whole family. I am so happy to hear that you and Michael are more united than ever. You need to lean on each other.
Finnian is an absolutely beautiful baby boy!
I want to truly thank you for sharing your thoughts and journey with all of us.
I so wish there was something I could do for you.
Alyson aka alyny from PO