If it didn't happen to me as often as it does I wouldn't think anything of it. But life has a way of putting you exactly where you need to be right when you need to be there.
Here's what happened today. Looking for something to do with the kids for our "morning activity" together, I decided to finally deliver two cases of Elecare baby formula to the Boston Children's Hospital GI floor. Considering I'd been sitting on it since my daughter outgrew her food allergy over a year ago I needed to get this stuff over to the hospital and put to good use before it expired.
I know they call breast milk liquid gold -- and believe me it is -- but this Elecare stuff is LITERALLY liquid gold when breast milk either just won't cut it for a sick baby or the breast milk ends up making an already sick baby more sick -- which as a breast feeding mother is an awful thing to have to go through. It's also $50 bucks a can. Imagine? So, I loaded up my two little monkeys into the car with our precious Elecare delivery and off to Children's we go.
Children's is amazing. It is also heart wrenching, humbling, and the miracles and tragedies that go on every minute of every day there -- well, let's just say that calling it a "remarkable" place doesn't even cut it. Because we've spent so much time there -- either literally living there and roaming the halls in our PJ's for weeks at a time or spending anywhere from 45 minutes to 8 hours at follow-up appointments and procedures -- it's always nice to go when we don't have anything official on the docket. Like our visit today.
The place is always buzzing like mad. There are literally thousands of people there at any given moment, 24 hours a day, 7 days a week. A kid could be getting a broken leg re-casted or a mole removed and another kid is in a fight for their life having open heart surgery or brain surgery. It's pretty, um, "remarkable." And because it's so damn busy it's not SUPER likely you are going to run into someone you know or any of your kid's doctor's, surgeon's, or therapists -- but when you do, it's pretty awesome.
So, today -- after dropping off the Elecare (to my daughter's-cardiologist's-wife who happens to be a GI doctor-- go figure) I'm pushing my double stroller through the lobby and just about to leave when a guy passes me who I swear is the dad of a five month old baby boy with a very serious heart condition who's blog I've been following called Echo of Hope.
As I've said before, it's hard to find blogs or even care pages that are similar to your own story because obviously each child's situation/story is so different -- but when another heart mom friend forwarded the Echo of Hope blog to me -- I really got sucked in because some of what this family has been through and nearly almost everyone they have on their "dream team" of specialists (as the dad likes to call them) are our peeps too. To top it off, this family actually went through the fetal intervention surgery before the baby was born that we didn't end up having to go through (a heart surgery they perform through the mother's uterus on the fetus -- sounds like fun, right?) When your diagnosis is as rare as ours is -- the inner circle of who can even help you gets REALLY small -- and this team of people are only found at Boston Children Hospital so you have to get to Boston in order to hope for a miracle. When I read this dad's blog I became an immediate fan for a number of reasons. Usually heart blogs/care pages are written by the moms. A blogging heart dad is like spotting a rare animal on safari. Once I realized Echo of Hope was written by a heart Dad -- I thought, wow, this is pretty cool. Then I realized the family wasn't from Iceland or China like some of the other families I've met -- they are from freakin Stowe, MA. Oh, and he's a super talented writer and is funny as hell. How funny is open heart surgery on a newborn, you ask? Go check out his blog. He's awesome. I got pretty hooked into keeping little Ari in my thoughts from day-to-day and praying that he gets to be a two and half year old someday too.
This is not the first time I've stalked other heart families at Children's. I can save those stalker/totally random stories for another post. But my previous track record of trying to find other families like my own would tell you that there is no way in hell I was going to let this guy walk right by me and not say anything in order to find out if it's actually him. Why not beat the odds of how rare all this crap is in the first place and at least attempt to make a connection that could be in itself almost just as rare? So, I pull a double stroller U-turn and start following him saying, "Excuse me, Mike? Are you baby Ari's Dad? Do you write Echo of Hope?" He looks a little stunned because I don't think you start a blog about your kid having a heart condition and then expect immediate on-the-street fame from it -- but we start to chat once he realizes I'm not paparazzi. I introduce him to my daughter, tell him she has Pulmonary Atresia, that we have the same "dream team" and that we were also considered for a fetal intervention surgery when I was pregnant. This is the kind of banter a heart mom will throw around to show her street cred and to prove to the other heart parent that we're legit and down with the struggle. It would be easier if the Advanced Fetal Care Center at Children's gave us all some kind of badge we could flash, like the FBI have, so we can skip all that crap and get straight to the "heart" of the matter :)
He's in the phase where they are living at the hospital so he was very open to the distraction of having his wife and mother-in-law come down from the CICU and join me and my little ones for lunch. It was kind of an insane impromptu get together given I had the two kids with me and they were all over the place -- but I can't really describe just how awesome it is for families like ours to find each other not only literally amidst the sea of madness that is Children's Hospital but also emotionally when we're riding a roller coaster that is so individually our own and we feel like no one could ever really know how turned upside down our lives actually are. And thankfully my family's life has been turned back to an upright standing position again. Let's hope the same happens for this family.
But these guys are IN IT right now -- their little guy has a different diagnosis than my daughter with a different technical plan for getting this kid to survive his diagnosis and he's already five months old and struggling to get out of the woods just enough that he can grow a little bit more before having additional interventions. But their day-to-day right now is pretty similar to what we went through during the beginning of our own daughter's life in that that they just aren't sure where things are going right now or where they are going to end up. Hearing our story, meeting my daughter and laying eyes on a kid that really just looks like any other toddler on the street meant a lot to them. But you know it has to be hard. You have to imagine -- you have your little five month old upstairs in the CICU and you are praying that the hell you are currently living in is going to someday result in a little toddler, running around, laughing and giggling and sitting on your lap. We know because we were sitting in their shoes two years ago praying for the same thing. It's never a guarantee for heart families and none of us ever know in the beginning when the doctors are trying to figure out what they can and can't do just how our individual stories are all going to end.
But that being said, I knew from this Dad's blog that he has taken this situation and put up an unbelievable fight for his little guy, just like any parent would, with the strength, courage and humor you need to get through something like this. I'm a big believer in humor having the ability to get you through pretty much any shitty situation in life. I think Ari's dad would agree. Even if you know nothing about having a sick kid or heart conditions or any of that crap -- his blog is awesome. Not my crappy online journaling kind of blog -- his is like a legit amazing I-want-to-sign-up-for-updates-from-this-blog kind of blog.
Totally awesome encounter. Another day, another heart family stalked and found by mollygog. I am so glad that I waited over a year to drop off that Elecare formula so I could randomly walk by this guy in a crowded lobby and have it turn out to be another amazing heart family. For all the hard days there have always been special days like today sprinkled in that are like a little gift from heaven.
And a shout out to whoever's job it is up in heaven to coordinate the accidental meeting of families like ours -- you've got a pretty sweet guardian angel gig up there in the Big House. Job well done.
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