Monday, September 8, 2008

Angels too soon

There are too many angels up in heaven running around with holes in their diaphragms--or at least they were that way before they were healed in heaven. Angels like Connor who will be watching over twin baby brothers next year (basketgirl--they will be in your NICU!). Angels like Parker who will soon watch over a family as they deliver a baby with CDH and stay in her house named in her honor, run by her amazing parents. Angels like Roo who now watches over her family in Germany. Angels like Baby Will who earned his wings after a short yet valiant fight less than a month ago. Angels with names like Avery and Sarah and Drew and Jolee and Joseph.

Heaven's newest angel is Elliot Arcile Reed. Elli was born almost three weeks ago and was a tremendous fighter. As her parents put it, she "re-wrote" the book on CDH care. She did things her own way and had the doctors continually on their toes. She found her way into the hearts of many, thanks to her parents Brian and Cassi who shared every step of Elli's fight on their blog. Elli and her family were to move back to Iowa once she was able to come home and her follow-up care would've been at Children's where Leah was treated and followed for 2.5 years. We were rooting hard for Elli, praying everyday that she could win the battle and defeat CDH. She passed away early this morning in her mother's arms.

I can't pretend to imagine what these parents go through. Yes, my child also had CDH, but some how things went differently for us. I don't question why Leah was born with CDH, but often question why was she a lucky one? It shouldn't have to happen to any of these babies that they don't survive. I struggled with survivor's guilt for a long time, and still do. Yes, we are blessed with an angel of our own buy why can't every parent get to experience that? It is hard when you follow these stories of these babies and see it end all too soon. I feel helpless--I don't know what to do to help them know that we feel part of their loss as well.

Will it ever change? Will there someday be hope for CDH that the survival rates increase? I hope to see it in Leah's lifetime.

Not to get too political, but I would be thrilled to see Sarah Palin in the White House. Megan, the expecting CDH mom who I was able to meet this summer, has met Sarah Palin. Sarah was pregnant with Trig at the time--they even have a picture of Megan with Gov. Palin. As govenor of Alaska, she signed a proclomation earlier this year declaring March 31st Congenital Diaphragmatic Awareness Day in Alaska. Just think if we could get that kind of exposure on a national level.

To all the sweet angels in heaven, know that you are missed greatly by friends and family everyday. You have all left footprints on this earth and will not be forgotten.


TJ said...

Very well-written! I sometimes forget how lucky we are. I gripe when the kids are sick, but there are thousands of parents whose children will never get better. Mine are only sick for a week.

I think Sarah Palin will pull a good amount of women, middle-class workers,and special needs parents. I think people under-estimate the number of people who are affected by special needs children. We have a 7 year old niece with Down's Syndrome. I can not even imagine the challenges her family faces everyday.

Cristin said...

I have a bunch of survivor guilt too.. Graham survived when babies who didn't seem as sick lost the battle.

I know some people think that I take Graham's issues lightly... I do take them lightly, becaue what we're dealing with is NOTHING compared to dealing with the loss of a child.

Mom on the Run said...

I guess in sharing all my information, I forgot to say that my college roommate's son was born with CDH. He had two surgeries and had to use a feeding tube into his toddler years, if I am remembering right. He's 9 now and a character, to say the least.

She was the State Treasurer of Nebraska in the 1990's--he was born after she left office.

kmm0305 said...

MORT--was his surgery done in Omaha? If it was, he probably had the same surgeon as Leah. He was a huge Huker fan! And one of her neonatologists was a former Nebraska football cheerleader (I'm guessing he is in his mid 30's or so).

Mom on the Run said...

Yes, I think he was actually born in Omaha because they knew about it when she was pregnant and did the first surgery right after he was born.

Anonymous said...

Thank you for always remembering our babies. For never forgetting those that our children left behind.

I was so angry for so long because Parker didn't make it. Not just angry with God but myself and the parents of surviving children. I believed that somehow I should have fixed her because I was her Mommy. I didn't understand why then bur I do now. God's purpose for P's life wasn't what Ashley and I had planned or hoped for. It was and is so much greater than that! I am constantly amazed at how many lives she touches in such big ways. I can't help but smile with pride!

The CDH journey sucks. For all of us and not just those of us who lost. In some way we all lost.

It's people like you, Cristin and Jenn that keep me grounded. And keep me smiling. How blessed we all are to have each other to rely on through thick and thin. I do wish things had been different with P's CDH but since it's not I'm gonna just keep rockin' the CDH world girl!

Thanks for always giving us the most awesome shout outs!

Darcy said...

Thank you so much for this post. My son just turned 18 months and had RCDH. I too deal with a lot of survivor guilt and it is really helpful for me to read that others experience it too. I think I also have "super-lucky" survivor guilt because Owen did so well. Reading Cristin's comment, I have also felt guilty that our struggle was so much "easier" I remember reading about all that Graham went through and felt guilty, not because I would have wanted Owen (or us) to go through more than we did, but because I didn't want others to go through even tougher times and especially lose their babies.
I have never questioned why we went through what we did. We all came out stronger for it. But I also have a healthy baby from the journey.
Anyway, thank you for posting this, it really meant a lot to me.

Jenn M said...

I'm SO done hearing that another baby didn't make it. It's 2008 for freakin fuck's sake, SAVE these babies!!! My heart breaks every time; for the family, for the doctors who fought, for pregnant moms waiting for their CDHer, and for all of us who feel so damn helpless against a ridiculous defect that just doesn't seem to follow any rules.

That survivor guilt? It sucks because it's paired with more guilt over feeling guilty for such a gift. The whole thing just sucks.

wow, didn't quite intend for such a vomit, sorry. I just feel so sad for those sweet families and can't believe it's not stopping. I appreciate your post, those sweet babies will NOT be forgotten.