Come and Mourn With Me Awhile

Funeral Mass for Ewan Eliezer Petermann

Saturday, October 9

12:00  pm

St. Joseph Catholic Church, Issaquah WA

Graveside Service

Calvary Cemetery, Seattle

2:30 pm

* * *

If you cannot be physically present with us, please join us in honoring Ewan's memory. Pause and observe a moment of silence. Light a candle. Pray for other families who have lost a child, or who are fighting for a child's life.

In particular, remember with me baby Joshua Haskins who lost his fight with HLHS just one day after Ewan's passing. The Haskins family lays baby Joshua to rest today, too.

Come and mourn with me awhile.

If you're interested in offering a a financial gift in Ewan's memory, please see the In Memoriam page.

You've been there, done that, and have the t-shirt

CHD Awareness shirt from Zazzle.com

My fellow heart-moms, I have to say: you are a lifeline for me right now!! You've been there, done that, and have the t-shirt (and you're still going there!).

As I was reviewing comments from the past few posts, I got a lot of information that neither my husband nor I had heard before: about government and other assistance programs, about ways we can get help to make it through this crazy time.

And then I had the thought:
What else do you know that might help?

I'm not just talking about ways to get financial assistance, though if you know of ways above and beyond what has already been suggested (e.g., the SSI form for a child's disability), then I want to hear it. But I'm wondering what else you've gained in your experience that might be helpful for us to know.

I don't want to limit the scope of what is offered, but I'm thinking about anything in the way of the following: NICU survival tips, asking the right questions of your doctors and nurses, things that might have worried you at first that may have turned out not to be a big deal (or vice versa: things that seemed like no biggie but turned out to be important), things you wish you would have known and/or taken advantage of while your child was there. Anything like that. I know there is a wealth and variety of experience, so have at it.

What should we, or do you want us, to know?

prayers for a tiny heart

I know that many readers here already know Jill, the fierce Mama Bear and feisty redhead expecting Baby Joshua. But I also know there are friends and family who read this blog who may not be familiar with their story.

Our introduction happened in kind of a convoluted way, though I suppose with our general immersion in a variety of social media, such connections might not be all that unusual. Thanks to some strategically timed hashtags I used on Twitter (#CHD), Kristine -- a tremendous advocate and warrior for CHD awareness -- found us and connected us. Jill and I were each embraced by this community of "heart moms" -- moms who had given birth to babies with congenital heart defects.

Jill and I connected in a special way (I think) because we were anticipating these births -- we were so very new and just becoming acquainted with the world and the language surrounding CHDs, the community, the work already being done, and so on. At about the same time, we were surrounded by a host of other mothers who had been through what each of us is about to face -- people who could relate to the unique difficulty of the circumstances we each faced at a time when it was so easy to feel very, very alone.

Jill and her family are just days away from meeting baby Joshua, who has been diagnosed with Hypoplastic Left Heart Syndrome (HLHS for short). For HLHS babies, the left ventricle of the heart is too small or not well developed. The mitral and aortic valves are either not present, or are much too small. Additionally, the first portion of the aorta is small. Combine all of these defects, and it means that the heart is not equipped to pump sufficient oxygenated blood to the body. Like Ewan's Tetralogy of Fallot, HLHS is a very serious heart defect that will require surgery almost immediately after his birth.

Jill is scheduled for an induction at 6 a.m. on Monday, August 16 (Central Time). Though each of our hearts have been preparing for these journeys since we found out about our boys' hearts, this is the moment when it really begins -- when he no longer is nourished and sustained by her body, and these two amazing parents hand over their baby to skilled surgeons and nurses to repair his perfect, broken little heart.

I would love it if the readers of this blog would pray for Jill and her husband Shane, as well as big brother Caleb and big sister Hannah as they prepare for baby Joshua's arrival. Jill will tell you this boy is very feisty (much like his buddy Ewan), and I for one am counting on him to give HLHS a fight like it's never seen. I'm hoping HLHS won't know what hit it! Please join me in praying for and encouraging this family as they begin this journey unlike any other.

To stay up to date on their story (or to catch up to where they are now), you can visit Jill's blog by clicking on the button above.

awareness & advocacy

I have to admit: I tend not to be a very cause-oriented person. Right or wrong, I think it's at least in part a reaction against being the type of person who once felt like I had to care about every single cause that was put in front of my face, and the truth is, it's just not possible to care about everything. You have to choose.

You and I both know at least one thing I care about now (and if you're here, I'm assuming you do, too): Congenital Heart Defects (CHDs). In fact, I've got quite the bee in my bonnet about it.

Anyone who knows James and I knows that we are educated people. We had done a lot of reading and research. We had all the books, and we were aware of a litany of things that could go wrong with a pregnancy. And yet, CHDs never came up. Not once.

Prior to learning about Ewan's heart, I had never heard anything about congenital heart defects. I had heard of spina bifida, Down's syndrome, club foot, cleft palate, and a host of other abnormalities that may present themselves in an ultrasound. There was an awareness that just about anything could go wrong in a developing baby, including the heart, but in a very back-of-the-mind, I-don't-need-to-worry-about-it kind of way. I had never known anyone or heard of anyone who had experienced this, so in my mind, it couldn't be all that common or worth worrying about.

This couldn't be further from the truth. As birth defects go, CHDs are very common. In fact, they are the most common birth defect, occurring in 1 out of every 100 births. CHDs claim the lives of twice as many children as all types of childhood cancer combined. And yet -- in spite of how common they are -- pregnant women are not routinely screened. So many of the families we've met didn't know anything was wrong until after their children were born -- and in some of these cases, it was just too late.

But enough from me. I've barely started out on this road, and I'd like you to hear from someone who has more experience. Stefenie is another wonderful and encouraging Heart Mom I've met through blogging. In a recent post, she put some good words to that vague, niggling feeling I've had about the lack of general awareness that exists about CHDs. Please read on.