Friday, July 18, 2008

My Struggle.

Something, I have always struggled with is how much to tell people about Leah. As the months go by and Leah gets older, my struggle becomes more apparent. Now, that she wears a splint on her hand, the questions and the looks are coming in. In the moment of the question, my internal struggle goes back and forth. I have no idea how I want to answer these questions.

My response lately has been, Leah has weak muscles.
Fine. That's the easy way out. Is that the right way to answer why she is wearing the splint? I don't know. I feel like it's the cop out way. The don't ask me anymore questions way. In some instances, I think that it is a fine answer--especially to strangers. In other instances, I truly think that I am not doing Leah justice.

Leah had a stroke. KIDS HAVE STROKES. UNBORN BABIES HAVE STROKES. How many people know that? I sure didn't. My husband sure didn't. My family sure didn't.
Why am I not telling everyone I know about that? People should know. The more I dive into the world of Hemiparesis, I see that it is not as uncommon as I thought and yet so many people have no idea that it is even possible.

So, what do I do? Do I tell everyone that asks that she had a stroke in utero? I don't want people to look at her like there is something terribly wrong with her. There is nothing "wrong" with her, she just needs some extra help. What if when she is 10 she resents the fact that I've told everyone? I am her voice right now. What if when she has a voice she is upset that I "violated" her privacy?

I pray daily that the decisions that Avi and I make are the right ones for our daughter.

The American Heart Association has released new guidelines for Pedatric Stroke. Here is a wonderful article: ABC News: Kids Can Have Strokes Too, AHA Warns

6 comments:

North Dakota Ward's said...

That is what we struggled with was not giving Sammy the choice of telling people and violating his privacy. But slowly we are getting more comfortable about this. Sammy did not have a stroke, so his is a bit more complicated to talk about. Right now, I say that he had a brain defect and as a result has motor delays on his left side, or I say he has left sided weakness. My husband just dives right in and says he has CP. I think that most people are not aware that CP can be in mild forms, so that is harder for me to say out loud. I don't know what to tell you besides that we struggle with this too. Good luck, I would love to see a picture of the slint.

Sarah said...

Amanda, you and I are WAY too similar! ;) I posted about my similar struggle just last week. And I was going to forward the story to you this morning, but you probably got it from Mary Kay. What an AWESOME story. Did you comment? I did (I'm sae528).

As for what to tell others, I just think we can't act like it's tabboo. It's not. And there's nothing wrong with people being different. Everyone is. And people need to know it's ok. I think people have such a negative conotation with the words CP--we need to change that. And we need to change the perception that only adults suffer strokes. There's just too much to lose if we don't spread the word for our children.

therextras said...

I'm all for saying what makes you feel most comfortable. And allow yourself to say different things on different days.

While I'm not a parent of a child with a diagnosis, I spend a lot of time with parents who are.

You write really well and clearly and in an entertaining, comfortable manner. Leah is a blessed child to have you as a Mom.

Barbara

Erin said...

Amanda,

I have the same thoughts and struggles and than think to myself how can I NOT NOT say anything.

I was one of the parents who didn't know this was possible and a mom who has experience the emotional rollar coaster just like you.

I want to tell as many moms, parents, grandparents, docs, strangers, as much as I can so people will realize it does happened and STROKE HAPPENS AT ANY AGE and that maybe by telling people they will help make a difference and hope to get the support and research to prevent this from happening in the future and or at least get earlier dx. You are a wonderful mommy and Leah will be proud of you.

Erin

Kiera Beth said...

This is such a hard topic and I agree that you need to say what you are comfortable with. I find that there are days where I feel that I can answer all of the questions that come along with mentioning that he had a stroke and other days when I am just not up for a long, emotional explanation.

Just by having this blog and by opening yourself up to questions by other parents, then you are becoming an advocate. Do not feel like you are short-changing Leah!

You are doing a wonderful job and Leah will be proud of everything that you do!

therextras said...

Me again - I just read a post at http://rollercoasterparenting.blogspot.com/.

You might want to read also. Barbara