Musings of a Marfan Mom

August 8, 2014
by marfmom
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Friday Favorites

Come on over and link up a favorite post that you wrote this week! Amy and/or I will come over and comment on each of your posts. I hope that you’ll spread the love and visit the blog or two above yours too.


Friday Favorites with Musings of a Marfan Mom & Anktangle

August 7, 2014
by marfmom
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When It’s Not You

One thing I don’t think the hopeful adoptive parent community talks about much is when things don’t work out the way you’d hoped, whether that’s not getting picked, or having a failed placement (when the mom and/or dad change their minds about placing their child for adoption).

I think the only time I’ve read about it has been from The R House, where over the course of the year they had both a failed match and a reversed placement (where they had the baby for a few days before having to give him back).

It wasn’t until well after we were waiting for a baby that I realized the national failed placement rate is 50% and that your profile may be shown many times before you’re selected as a match. To this day this process isn’t something any of our agencies have really talked about with us. Our two new agencies (our first one is closing) have both said they generally don’t tell you when your profile is being shown, though the second agency said they’ll pass along regular feedback to us.

At first I was leery of this no notification policy. I have some adoption trust issues right now, after what happened with our first agency. But, I’m beginning to see the wisdom in it.

In March, after about 14 months of waiting, our profile was shown for the first time. Actually, it was shown twice over the course of a couple of days, and not through our agency but through a nonprofit that we are also working with. Ultimately, after an agonizing few weeks of back and forth, neither baby was placed with us (obviously). I felt particularly emotionally invested in one of the babies (ridiculous as that may be because they were never mine), and it still stings a little these 4.5 months later.

Then, over the past week, we’ve been shown twice more. Although usually our agencies don’t tell us, sometimes there are exceptions, and we always know with the nonprofit. What’s the waiting period to hear if you’ve been picked as a baby’s parents like? On one hand, it’s so exciting! We begin to make plans. I do all the laundry. Mentally prepare for childcare logistics. Scout plane tickets. Browse Pinterest. On the other hand, there is this heightened sense of stress and anxiety, especially as it can take days or even weeks to hear back. We may not be kept in the loop well. There’s hope, and a lot of fear.

We weren’t picked for either of the babies this week. While I’m happy for whomever will be adding to their family now, I feel very sad too. And the process is exhausting. I’ve had a 3 day headache and I would prefer to sleep most of today, if I’m being honest. Monday marked 18 months of waiting. It’s hard getting your hopes up only to have them fall just as fast. Several times this week I’ve commented to Mark that I wish I could just feel less, because it would make the disappointment easier to bear. I read this article during the wait though, and I agree with the author that I don’t want to rob myself of possible joy, either. Whenever we do have a successful match and bring home our 3rd child, I want to someday be able to tell them of all the happy preparation we did for them, and not how I tried to block out all my feelings.

I hope that day comes soon.

Today though, I’m taking my boys putt-putting!

August 6, 2014
by marfmom
4 Comments

Marfan Role Models My Son Can Look Up To

Back in 2010, I wrote My Beef With the Michael Phelps Marfan Obsession, a piece that remains one of the most read on my blog. I objected (and still do) to the idea of Phelps (who does NOT have Marfan) as being a role model for our community. I hoped that some day, our community would have a spokesperson who our kids could really look up to.

It took four years, but here we are! Not just one, but two spokesmen! We have Ron Williams, CEO of Cash Money records, and Isaiah Austin, former Baylor basketball star.

I had the opportunity to meet them both at this year’s conference. Mr. Williams spent some time with the teenagers, which was fantastic. Isaiah Austin posed for hundreds of photographs. Mr. Williams is someone who is acknowledging that he has Marfan, and showing our youth that it doesn’t have to impede their success. Isaiah was willing to be public about his diagnosis, too. He’s stepped away from basketball, and finding a new dream. He’s showing kids that even though Marfan can cause loss, it isn’t the end. I’m grateful for the time both men took to be around our youth.

They are what I have hoped for. As I had a poster of the board of directors on my wall as a young teen, I won’t be surprised if J has a poster of these men someday. There are positive role models throughout the Marfan and related disorder community, but there is something particularly special about having some in the public eye.

Isaiah Austin Marfan

Mark and our boys with Isaiah Austin
Photo credit: Tim Joyce Photography