A Little Something Extra

Saturday, October 13, 2007

Diagnosis confirmed

My first blog. I had always admired those who could do a blog for their children. I love catching up on friends' lives who live far from me; however, my motivation to do so myself just never kicked in. But maybe this is what I need right now... a way to "verbalize" my feelings and thoughts about what is going on in our lives.

The call came yesterday afternoon at 1:50pm. "Hello, Jennie, this is Dr. H. I have the results from your amniocentisis and I have bad news for you. Your baby has Down syndrome." Should he have phrased it like that? Shouldn't he have been encouraging? Maybe something like, "You might have some challenges ahead of you, but I know you can do this?" I guess he doesn't know that. How could he? WE don't even know we can do this. But at this stage of the game, it definitely seems like "bad news." I confess that my first thought was not T21 (Down syndrome)... REALLY bad news would have been T13 or T18, right? Those are both terminal.

A friend told me yesterday that she was "excited." I guess that's related to hearing about how God is going to use this child. Here's my problem: it's easy for her to be excited because it's not HER life that has been permanently radically altered. She won't have to explain to a 6-year-old boy why his little brother can't throw a baseball yet. Or explain to a 4-year-old boy why these random people come into the house to pay extra attention to his little brother in order to help him learn and talk. Or be the one people look at with pity in their eyes when they see a child with special needs walking through the mall with her.

When we found out 10 days ago that our little guy would need surgery soon after birth to open his duodenum, I didn't cry. I mean, I worried, and I still do. But I didn't have the flood of tears like I've had since 1:50pm on 10/12/07. I know the tears will diminish over time. I know this is just part of the grieving process. I feel his kicks and he could be just like any other baby in utero. But he isn't. He's different. And he always will be. I know I should use the word "special" and not the word "different." But aren't all children "special?"

I'll share more details about how we got to this stage in later posts. But for now, I can't think of anything else to say. "God works ALL THINGS together for good." It's in the Bible, so I know in my head that it's true. I have to find my faith to lean on that as truth.


Anonymous said...

Hi! Just a stranger here reading your blog. My daughter Gianna has DS also and had duodenal atresia. Just letting you know that the duodenal atresia repair was really straight forward and we were home again after 12 days. As for the down syndrome, your little boy will bring you more joy than you could possibly imagine. I do still pray at night "if you want to you can heal her" but I love her so much just the way she is that I only half mean it! Pop in to downsyn.com and get a glimpse of what life is like living with DS. There is a whole ton of support and understanding on offer there!

Thinking of you

Anonymous said...

I understand you are dealing with a lot of information and thoughts right now (this will never end), but here is how I have lived it so far and I hope it may help...

have a 7 year old son with Down Syndrome and two other "normal" children. I will not say that it is always easy to have a brother with special needs but I will say that the the patience and compassion my other children have developed is amazing. I feel the benefits of them having a brother with special needs far out weighs any negative. I never could have taught them all the wonderful lessons he has. They have all learned so much from each other.

Also my seven year old can throw a baseball (he learned this early on) farther and with better aim than my other two can. And my daughter loves her brother's speech therapist I think it may be her future career. Your child will amaze you with what he can do!
Good luck!

Neal said...

It's hard. You've probably had lots of thoughts and hopes and dreams of how yor life would be, and now you aren't sure if that is how it will be.

In fact after the doctor called, you now know that things aren't the way you planned them.

I remember getting the call from my wife in Jan 2000 after the doctor called her and abruptly gave her the "diagnosis".

I was so scared. I didn't know exatly what this would mean.

I cried, I prayed for miracles, I researched. All are perfectly normal.

Now for the good news. This child will bless your life in ways that you can't currently even imagine.

Your life will be filled with more joy than you ever thought possible.

You will learn things about yourself and the world around you that you never knew.

That one little extra chromosome can mean a lot of things. But ask any parent of a child with Down syndrome and they will tell you that the #21 chromosome is the love chromosome.

You'll be amazed at how much love your child will have, give, and get.

There are so many people who can help you. You should definitely visit http://www.downsyn.com/phpbb2/index.php if you haven't already.

I'm a dad of a beautiful happy little 7 year old boy with Down syndrome.

He is the most incredible person I've ever met in my life.

While I wish that all babies were born perfectly, that just doesn't always happen. God has a plan for you and your son.