Tuesday, March 15, 2005

From Heaven Little Angels Come

My cousin Tim and his wife Jocelyn had their first baby Sunday the 6th.

Tim and Joc (read Jos) are head over heels in love. Joc is a beautiful intelligent woman with a 100 watt smile. Tim, a handsome man, has a quiet way about him with a dry wit that can make you fall off your chair laughing when he tells a tale. (Something he inherited from his Dad, Big Ed-just don't tell Tim I said that, he doesn't think he is anything like his father) He works for the CDC and she is a Speech Therapist for special needs kids. They were married a couple years ago at one of the historic churches in Boston. They live in Maryland now, near Tim's family, my Uncle and Aunt. They're a beautiful young couple with a bright future. Life is good.

Until... They found out their little girl has Down Syndrome. The bits and pieces of news I got through my Mom went like this: First there was a question of something being off with the baby. A suspicion of Downs, the bloodwork would tell. Baby Maren has some physical symptoms - something with the rolls at the back of her neck, the wideset eyes the shape of her skull. She does not have the dropped ears, the line across her palm. The blood test comes back positive - Down Syndrome. Talk about a kick in the nuts.

My Mom called and told me, as she was breaking down crying, so was I. The way she sobbed when she told me "I've never heard my brother cry like that" talking about my Uncle "Big Ed", who I have never seen cry, killed me.

On a sidenote - I am a crier. I cry reading sentimental greeting cards, I cry every Sunday I watch Extreme Home Makeover, I cry reading Wil Wheatons Blogs, I cry at the sappiest things. I come off as this tough biker chick when I am really just a wus.

I go off on a web search to learn about Downs. I didn't know that there were 3 different types of Down Syndrome. I didn't know that there was a 1 in 800 chance of having a baby with Downs. Holy shite - 1 in 800 chance of having a baby with Downs? And those odds increase with age!
I found some great sites about it. Some personal sites with great advice and a peek at what life with a Downs baby is like, some professional organization sites with oodles of info and support. Loads of great info out there.

I stopped by my Mom & Dad's a day later and was chatting with Mom about my research. Hoping that Baby Maren has Mosaicism:

Mosaicism occurs when nondisjunction of the 21st chromosome takes place in one of the initial cell divisions after fertilization. When this occurs, there is a mixture of two types of cells, some containing 46 chromosomes and some containing 47. Those cells with 47 chromosomes contain an extra 21st chromosome. Because of the "mosaic" pattern of the cells, the term mosaicism is used. Mosaicism is rare, being responsible for only one to two percent of all cases of Down syndrome.
Some research has shown that individuals with mosaic Down syndrome are less affected than those with trisomy 21; however, broad generalizations are not possible due to the wide range of abilities that people with Down syndrome possess.
http://www.ndss.org/content.cfm?fuseaction=InfoRes.Generalarticle&article=20 I hope baby Maren has this type of Downs, I hope she has the ability to be very high functioning with minimal developmental disabilities.

I told Mom I wanted to send Tim & Joc a letter showing my support. I've been rolling it in my head since. So here is an open letter to them, a rough draft I will send to them via snail mail later. (No one in my family is aware I have this Blog yet, so I doubt they would know to read it here.)

Dear Tim and Jocelyn,


Congratulations on your beautiful daughter! Mum showed me a couple pictures. She is an adorable little peanut. I hear she is nursing like a champ. I hope she isn't up every two hours like Christopher was. I don't think I slept for 6 months!

I've thought a lot about what I want to say to you and I hope the way I feel comes across correctly. I understand how difficult it is to deal with the reality of a disability. The heartbreak of knowing your child has difficult challenges ahead. The guilt of wondering if it's your fault, if you could have done something different, if you could have prevented it.

It's not your fault, there's nothing you could have done to change it. It is what it is, and it's going to be OK.

The first thought that came to my mind when I heard that Maren had Down Syndrome was that everything is going to be OK. She is the luckiest little baby in the world to have you as her parents. She will (as if she hasn't already) wrap her little hands around your hearts and you will be hooked for life. The love that the two of you share is very special - you can practically touch it when you are in a room together! That puts you way ahead of the game as far as being parents go. There isn't anything that the two of you together can't handle.

The only advice I can give is educate yourselves. I know Tim is already on it. When Christopher was born, I knew nothing about ADHD. I now have a veritable library on the subject. It helped me cope, gave me options and let me know that I wasn't alone. Knowledge is power and it gave me strength. I've done a little research and there are some great websites and organizations out there about Down Syndrome. They are making leaps and bounds in research nowadays and who knows what's around the corner.

Yes, Maren is one lucky little baby to have two great parents like you. She is going to have so much love and support from her family, and she is going to have a wonderful life.

Please, let me know if there is anything special you need. I never sent a shower gift, there must be a few things you didn't receive, so please let me know. You're all in my thoughts.

Sending love and positive mojo your way,

Sharfa

I think I'll let Mom read this before I send it to them to see what she thinks. It'll have to be next week since Mom & Dad are off on their cruise, lucky them. I'm here at their house grandparent sitting. But that's another post.

3 comments:

cicibug said...

Hey Sharfa,

Thanks for the compliment. I think everyone is touched by disabilities at some point in their lives. All you can do is live your life one day at a time and do the best you can. And like you said, educate yourself about whatever it is that is affecting your life.

You read my blog so you know I am personally touched by a family member with Down Syndrome. My cousin Tonja. She aggravates me, she frustrates me, she makes me laugh, and I love her just the same as I do my other cousins. Growing up I don't think I ever thought about her as having a disability. It's amazing how children can accept life without questioning why, but adults who have loads of life experience cannot or at least struggle with it more than is necessary.

I believe that God puts these special people here to bless our lives. Actually I can't even begin to touch on my feelings about this whole topic, but my suggestion is to send your letter. Share your feelings as well as your support. And ENJOY the baby. She doesn't know she is different and that's the way it should always be.

God Bless you and your family.

Lisa

Magazine Man said...

I'll have a thought for your cousin. That's a tough one.

(slightly awkward subject change:) Congrats on adding your special brand of wisdom to the blogosphere! Your comments and insights have always meant a lot to me on my little blog. Don't beat yourself up as you climb the learning curve here. God it took me forever to figure out how to embed links (even though the little button thingus was RIGHT THERE!), and I dunno what else. Go at your own pace; post once a month, or just when you feel like you have something to say. I started out by imagining I was writing to my best friend. Now I just write to you and the other regulars--and now of course there's no shutting me up (see what you've done??).

Anyway, you're bookmarked. Actual blogrolling to come next time I update my links. Viva Sharfaspace!!!

Anonymous said...

I think you're letter is both touching & sensitive, I wish your cousins all the best with their new baby.