Tiernan and I got to go to the annual Mended Little Hearts Picnic last Sunday. We missed last year's bash due to surgery but this is one event we really try to attend.
I'm so thankful for this group. The first meeting we attended was while Tiernan was still in the Mary Bridge PICU following his Christmas Eve Glenn. He would have just been extubated, the second time, perhaps the week earlier (maybe days) and we were grappling with the uncertainty of his heart condition as well as the news he would need a GJ tube. Favorite Nurse Jodi told us to go so we went. Understand how difficult it is to have both of us gone from his room at the same time. It's possible we wouldn't go unless some family member came to sit with him in our absence. I imagine that's what happened, because we walked across the street to the basement of Jackson Hall and found some people we had never met but "knew" instantly because of our shared experiences. When you go through something like this others will often ask how you do it. I don't always know how to answer that and usually say something like, oh, you just do it because you have to. But I think groups like this one are really the answer. We survive because we have other families with whom we can talk/cry/worry/research/laugh at our "not so funny to people outside the CHD world but really funny to us" jokes and comments/get advice on everything from giving meds to what sort diapers hold up best to high dose diuretics to Medical 504 plans when they get to school to.....to......to....
But MOST of all, we give and receive hope and encouragement. There is NOTHING that compares to sitting down with another mom who has gone before me in this and seeing their child running around before us. And there is nothing (outside of getting to be Tiernans mom) that makes all this more meaningful than being able to be that source of hope and encouragement and advice for someone else who is just beginning this journey.
I know I have written before about the incredible heart moms God placed before me, but I want to mention Dana again because God REALLY knew what he was doing on this one.
I work as a choir director for 10-13 year olds in a wonderful community near Tacoma. This year will be my 13th year at this school. Dana is one of the 6th grade teachers there as well. When I got there she had been there for awhile already and really knew what she was doing. Seriously. I was a bit intimidated by the standards set there. No lie. So several years in and she has this gorgeous baby named Alex. And Alex has heart defects. And she was on leave for most of that year and I remember her talking about the different challenges she had been having and here I am, pregnant with Tiernan and blissfully unaware of what God has in store. I remember being MASSIVELY pregnant the weeks before Tiernan arrived and reading an email from another work friend about Alex needing a pacemaker and I sat at my computer and said out loud to myself, "I canNOT imagine what she is going through!"
Oh boy was I about to get a whole lot of first hand experience with it.
The next thing I know we are in the midst of diagnoses and surgery plans and feeling lost and terrified. And I had forgotten about my resource (Dana) until I was sitting in the back of the ambulance that was transporting Tiernan up to Seattle from Mary Bridge. The transport nurse, AKA Favorite Nurse Lori, (have you picked up on the fact that we have a few of those?) was there and asking me getting to know you/take your mind off the fact your baby is in an ambulance questions, like, where do you work? And when I told her, she brought up Dana! Because, of COURSE she was a friend of hers and had taken care of Alex after his surgeries. This reminded me that I needed to get in touch with Dana and at some point over the following days I called her.
Random fact about myself....I'm insecure about phone conversations. I don't like them even when I am talking with my best friends. Sometimes I don't even like being on the phone with my own mother. (Sorry mom). So to me, calling someone I've never called before (and if you remember back a few paragraphs someone I was a little intimidated by (it just occurred to me that Dana doesn't know that part....Hahahaha. Now she does.)) was stressful. So stress layered on stress and here I am, a bundle of nerves calling Dana and she answers and I'll never forget.
She said, "Carolyn! (Because my work peeps call me that) I am SO relieved to hear your voice!"
And then "Everything is going to be okay because he will go to Northwest Childrens Heart Care and he will have Jodi and they will take such good care of him."
You just don't know the relief that filled my heart and soul with that conversation. And it's all because she had gone before. It means more than anything.
Since then, our boys have grown into 6 and 7 year olds who run around together pretending to be a giant caterpillar in the spray park. And Dana and I have walked this journey together. Through hospitalizations and feeding/eating/puking issues and losing our amazing surgeon Dr. Woods, to traveling to Stanford and all the questions and challenges that go along with that.
And Tiernan and Alex get to walk their journeys together which is AWESOME! The older they get, the more special that will become. I hope they always have one another to lean on in this life.
There are SO many more mamas I have met on this journey who are so important to me. I am thankful beyond words to the families we know through MLH and also those I have met on FB. I'm very certain that is the best aspect of social media in this world.
There is no way I would be as sane as I am if I didn't have Dana and the MANY others by my side.
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