The Daily News

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My Status: Fed Josh's almonds to the squirrels. They needed them very badly.

Tuesday, March 25, 2008

Why We Do What We Do What We Do

Prematurity, and hence children, are mentioned, but it is all for a good cause so please stick with this post if you can...

I wrote that last post and it kept making me feel like I was forgetting to do something. I hit publish and then scanned the words again and had this nagging feeling that didn't hit me until over 24 hours later--prematurity...problems...ah shit I never kicked off my fundraising for March of Dimes.

I was purposefully vague with the owner of said personality quirk or problem in the last post because I do think about how the ChickieNob and Wolvog will one day stumble upon this and say, "you told them about that?"

(though, it doesn't stop me from repeating this conversation between them at the breakfast table Saturday morning:
ChickieNob: How do babies get out of their Mommy's belly?
Wolvog: The Mommy goes to the hospital and yells "oh crap" and the baby comes out.)

Because they may read this one day, I would hate for the owner of said quirk to read this and feel self-conscious--especially if it is a quirk that they age out of and have no memory of in the future.

I cried a lot writing that post and cried a lot trying to read it aloud to Josh and cried in the subsequent discussion about said quirk. Oh, and I cried when Josh broached the topic that led to the post in the first place. It is a strong race, but I think by now, I have cried equally for infertility and prematurity. And while I'm a weepy person by nature, there is something about our children--those not-yet, those gone, and those here--that brings out this visceral, almost animal-like cry.

This quirk (do you like how I am calling it a quirk now, essentially moving it down to an eccentricity instead of the problem that will most likely need addressing) is most likely a result of prematurity, a result of a brain forming in a body that is still supposed to be quiet within the womb rather than subject to the high stimulation of the outside world. We have had a range of problems that we have dealt with in turn due to this factor--it began with bradycardia and heart monitors and then moved to three-and-a-half years of mild problems addressed by physical, occupational, and speech therapists.

I truly hate writing that because I feel like those who oppose fertility treatments or the result of multiples from fertility treatments use paragraphs like that as fodder for their arguments. The reality is that I would have most likely had a singleton with the same prematurity and the same problems. They were ejected from paradise prematurely due to IUGR which can occur with a singleton birth or a multiples birth. A stronger case could be made that I shouldn't be trying to procreate anymore, but that argument can be met with the fact that the premature birth of the twins led to the testing that found the clotting disorder that could make me susceptible for a stroke down the road and can be addressed with blood thinners in future pregnancies. Their prematurity may have essentially saved my life because without their early birth, the hematologist would have never asked for 22 vials of blood and tested for a clotting disorder.

We just wrapped up our final therapist after three-and-half straight years of therapy. We didn't have a great end meeting and I went home and raged about it to Josh, finally ending with, "I am so fucking sick of everyone telling me what is wrong with my children. Their whole life has been about what is wrong and no one wants to talk about what is right. And so much more is right."

That, of course, is an exaggeration. There are plenty of people in their world who focus on the positive, but hearing what is wrong is acutely painful because it all goes back to the fact that it was my body that ejected them early. And even though my rational mind knows that it was out of my control, my heart can't forgive myself for setting them on this path. And, at the same time, I can't apologize because regardless of what I know now, I would do it all over again.

I am walking this year in the March of Dimes walk for four children. Two sets of boy-girl twins, two sets of parents who found each other back in 2006, two friends who would have never known anything about each other's life if not for the Internet.

Last year, we walked for our friend's child who had just come home after 111 days in the NICU. We figured they couldn't walk that year and they would in the future, but he needed honouring in the moment. So we were Team Yoan/ChickieNob/Wolvog. And you guys were so generous. With your help, we raised over $1000 for the March of Dimes.

This year, we are walking for two children you know. Two children whose lives--albeit short--rocked our world. Lennox and Zoë have the type of mum who would have gotten them at an early age giving back to the world. She has a huge heart and she cares about the world so deeply. If they were still here, she would have taught them that sense of giving back through all of her love and the world really is a smaller place because they aren't here.

I am walking for Lennox and Zoë this year for a larger reason too that was mentioned by Snickollet in a post she wrote the last day her husband was alive. She wrote: "GH and I are both avid travelers. He's always been somewhat annoyed that I've been to more US states than he has. We both love to cross new states off our list. Today he told me that he'd like it if, when I travel to new states after he is gone, I bring him along for the ride."

And that idea stuck in my mind when I broached Allison with whether I could walk for Lennox and Zoë. It is their own road trip and if you are doing the March of Dimes walk this year and you would like to join along, to take them figuratively to another place, please let me know and I will pass along the design I am making for our t-shirts so we can mail our shirts to Allison and Shannon after the walk. I'd also like to know if you're joining Team On the Road so Allison and Shannon can see how much money was raised overall in honour of their children.

This is a long post about my own guilt and fears as well as a friendship that crosses five large states and brings together two parents of twins who would have never met each other if not for infertility and the Internet. And all I meant to do was ask you to support Team On The Road which is what I am naming this long, strange trip that brought together the ChickieNob and Zoë and the Wolvog and Lennox as well as Shannon, Allison, Josh, and myself. We are taking things virtually on the road and asking you to help out the March of Dimes by giving what you can--it does not need to be more than a few dollars because every bit counts.

Please donate to the March of Dimes and Team On the Road by clicking here.

And a small side note request since this popped up once or twice last year--anyone who donates for my leg of the road trip is being added in spirit to Team On the Road so I would like to list your first name (if you don't have a blog) or you blogging name (if you do have a blog). If you donate under a name that I don't know, could you also send me an email letting me know your blog name/url so I can link to it? Thank you very very much very kindly in advance.


HereWeGoAJen said...

I haven't started my own March of Dimes stuff yet this year. I'm not sure I am going to get to it because of all the moving/tiredness/work stuff going on. So, I would like to join your team in spirit. I donated. :)

Bea said...

Well, I hope the quirk turns out to be all silver lining rather than black cloud, whatever it is.

Great idea for the walk.


Ms. Perky said...

I wish I'd seen this sooner, because I *just* joined the MCPOM team. Not that it matters *which* "team" I'm on or anything, but, sheesh. Sigh. Well, I'll see you there, right?

Smiling said...

Thanks for the reminder to keep on talking to parents about what is great about their kids... not just what we are working on in 'speech therapy.'

When I come home from a day at work, what I share (with peudonymn etc) is all the amazing things my clients/students do - not what they can't do. I sometimes wish parents could listen in on how I think about the kids I'm so lucky to work with... And really the "quirkiness" often helps me fondly remember an amazing kid for years to come, wondering what they are up to.

Glad to hear that you wrapped up therapy - sorry that it wasn't a satisfying finale!