We are literally almost two months out from Haven's third and hopefully final open heart which happened on April 24th. She is doing amazing. Literally has more gas in her tank than we ever knew was possible. Clearly they put a whole new engine in there with extra horse power to boot because she is quite literally a different person. I didn't really know if I would actually be able to see a difference in her after her surgery -- but man-oh-man -- there is definitely a difference.
It's incredible to me that they went in there and did whatever the hell it is they do - and you can SEE on the outside that they changed something major on the inside -- you can see their miracle handy work in action. Imagine doing that for someone and seeing the results? Blows my mind....
She used to get super flushed and red cheeked -- even when she was doing nothing. Not anymore. Her cheeks are this gorgeous perfectly Irish pale pink color. She NEVER used to run. Or rarely tried anyway. She runs and runs and runs, and spins, and laughs and jumps, and throws herself around. And she does it with this HUGE smile on her face giggling uncontrollably out loud as she's doing it screaming, "Look at me mummy! Look at me running! Look what I can do!"
In a way it's why I found the video that recently went viral of three year old Grayson Clamp so compelling (a deaf child who hears his father's voice for the first time). Before Haven, I would be like anyone else who was moved to tears by this video -- just trying to comprehend that incredible look of surprise and awe that this little boy shows on his face when he is finally able to hear his dad's voice. All because of the amazing work of doctors and surgeons like Haven's who make these amazing things happen and who give people the gift of life, sight, hearing or the ability to walk for the first time. In that solitary moment of joy -- you are giving the greatest gift you can ever give a person.
But what I've witnessed up close these past several weeks with Haven is actually quite similar. She is literally amazed, in awe, and excited about what her body can do and to witness someone experience that kind of new lease on life -- it's pretty remarkable stuff. As long as you even get the chance to experience the silver lining of this heart mom stuff -- and many of us don't have that privilege unfortunately -- it's extremely moving, humbling, and just plain amazing.
We recently attended a celebration at Children's for kids who have survived ECMO (in their usual PC way they refer to the kids as ECMO graduates rather than survivors :) and it's a small group given that only 30% of kids survive ECMO nationally and the ones that do oftentimes have significant disabilities, both mental and physical, sometimes stemming simply from the fact that they had to be placed on the life support machine in the first place. So it's a weird experience walking around a picnic with less than 40 ECMO grads and their families -- all of us noshing on hotdogs and popcorn but knowing we were all VERY close to losing our kids from our lives forever at some stage along the way. And it's clear that many of these families are still faced with the ongoing day-to-day realities of the disabilities that came with a having to resort to ECMO as a life saving measure. But again, by the grace of god, not our Haven.
She was on ECMO for seven days (from her 4th day of life to her 11th). They usually like to get them off ECMO within 24 hours. They told us during that week that there was a high likelihood we could lose her. And that if she did survive and was able to be taken off life support, they explained to us the array of disabilities and or delays she very likely could have having been on the machine that length of time. Not Haven.
This is her at the celebration one short month after her second discharge from the hospital after having open heart surgery:
I mean, seriously? Seriously.
So in light of that video -- you can imagine -- we continue to be in awe of what has transpired in our lives over the last three years. There are days where we are so grateful and so thankful we hardly know what to do with ourselves. We want to make Haven's life the best life that was ever lived. We want everything she touches or comes in contact with to be perfect and happy and wonderful and give her every opportunity to take this gift of life she has been given and make every dream of hers come true. We want to pay forward all the good luck, faith, grace, and support we have been shown as a family by helping anyone we know who is traveling this path and who could use our help or understanding. We want normalcy. For our marriage, for our parents, brothers, and sisters who have had a front row seat to this and most importantly for our children -- so that we can ALL begin to do "normal" family things that don't necessarily revolve around just trying to keep one of our kids alive. And looking at this video it's hard not to feel like we are well on our way.
And yet life is still hard and super challenging from day-to-day-- even without a life threatening medical condition or a sick child. We are only now just coming up for air and trying to keep our household afloat (financially and emotionally) with the same extreme pressures that everyone else faces when raising a young family and living off one salary. And it's pretty clear we've come up for air in just enough time to take a huge deep breath before baby #3 (at no fault of its own, obviously) pushes our heads back underwater again after its born in a short five weeks time We know we won't drown. But we will definitely be back underwater. Sleep deprived and swimming upstream. It's going to be tough.
So we soldier on. And I guess I needed to write all that down just to realize WHY I haven't had a chance to write all this down! Our day-to-day is still very challenging even with a silver lining around it. And while it would make me sick to my stomach if I EVER thought I was complaining about the life I have so gratefully been given -- I do have to find a place and a time (which is oftentimes this blog:) where I can understand for myself that I am tired. I have been synchronized swimming for some time now with no breaks, and if and when I can finally make it to the edge of the pool, grab hold of the side, and just rest for a few minutes....I'll realize just how hard I've been swimming this whole time trying to stay afloat.
But as long as all three of my kids, my husband, and even me -- can keep laughing, running, jumping, and spinning around like Haven is in this video -- I'll continue to find the strength to push off from the edge, and get right back out there and swim even longer.
