Saturday, October 17, 2009

Looking Back: Somewhere.

As I mentioned last week, I'll be sharing some of my favorite past posts on Saturdays in October.

The words below are what started this blog. Before that post, I had never made a formal announcement of Playette's diagnosis. In the email I sent out to friends and family along with the link here, I said that, for my daughter's first birthday, I wanted to give her the best gift I could imagine: a mother that was no longer afraid.

Adjusting to the road less traveled is a process. I still find myself dealing with the emotions of it all. But I can say that it's better. Much, much better. When I wrote that post, I thought I was good. I know now that it's a journey and I wish I could go back and hug my past self and tell her that it really will be ok. Even as I wrote the words below, my heart was still aching.

Today, I don't feel that same way. The greatest thing about that is that it shows growth and makes me hopeful for the future. A future where I'm stronger in my convictions, quicker with my retorts, comfortable in my own thicker skin, and full of the stamina required to fight the battles that truly matter.

Even with all that, I'll still probably want to hug my TodaySelf next year.


Originally written June 18, 2008.

I've always heard that you have to start Somewhere, so this is it.

For the past year, I've been reading other people's blogs in order to help adjust to Malea's diagnosis of Trisomy 21, more commonly known as Down syndrome (Ds).

What a HUGE help those blogs have been...strangers to me in real life have allowed me to laugh with them, cry with them, but most, and best, of all, they've allowed me to learn from them. I feel like now, on the eve of her first birthday, I have wrapped my head around our existence enough to share with others and help show them that life is probably nothing like you think it will be. And that's not such a bad thing. Did I believe it? No. But it's true. Now that I can see a beautiful little girl with opinions and a sense of humor and a love of her drum and a distaste for getting her hair combed into the cutest ponytails I can muster every morning? Wow, has my perspective changed. I don't know if I'm talented enough to put it all into words, but I'm now committing to try to share a little at a time for as long as I can.

When Malea was born, Ds was the scariest thing I could imagine. There was nothing worse in my mind (the medical community has done a pretty good job of keeping folks antiquated in this regard). I was devastated by the news and consumed myself with getting all the best I could for her. When I wasn't busy, I was crying. My husband served as my rock, going through his own internal battles, but nothing visibly near the outward collapse he witnessed with me. And all of this just in time for our first anniversary!

I didn't tell many people. One thing I remember reading online was that people would take their cues from me. I didn't want them to pity us, or Malea. So only those who I trusted the most or who reached out to see if there was anything they could do to help or maybe just caught me at the right time got the news directly from me. I didn't want to risk crying and "screwing it all up." I didn't want to risk my baby's diagnosis (dx) becoming the latest gossip amongst a group of "friends." I didn't want family members who hardly came around to use that as a judgment against me. Oh, there was so much initial inner turmoil. I recall the one person I told who I felt was a close friend - and I've never heard from them again to this day. So, yeah, for any new parents reading this: it's not the baby that will cause you heartache. Your child will more than likely sleep like an angel (other new parents will marvel!) and be much more typical than you first imagine when you receive the karyotype results.

I began drafting an email to family and friends while still in the hospital with Malea after she was born. I felt like I owed so many people any explanation. I had already drafted the typical "Mother and baby are doing well" message to be sent out and well, I wasn't. So, what to say? All or nothing? Based on the last paragraph, you can see what I chose.

All that to say, here we are 365 days from me being all loopy in labor and we're F-I-N-E. Not to say that some days aren't more challenging than what some parents of Malea's peers may go through, but I'm thankful for what we have. We are not suffering. We've since moved across the country. The good part of that being that it's allowed for some seamless relationship purging, the hard part being missing out on the presence of those that really did come through when we needed support.

As we move from tomorrow and beyond, I'll keep you updated with the happenings of our beloved Little Crazy (per Daddy)/Bourgie-Bourgie (per Moma). Milestones will be celebrated, myths will be put to rest, lessons will be taught (I'm already drafting a post on the "r" word in my head), venting will be done, and you will see that we're just as "normal" as any other family...with just a little something extra.


ds.mama said...

After reading this post, I want to hug your TodaySelf now! :-)

Lisa said...

This is awesome. Along with the commentary from now. Thanks for posting!

sheree said...

you've come so far, friend!!

Can't wait to see you guys next weekend!