So go the lyrics to a beautiful song written to inspire hope when hope is all you have left to dream for. I grew up listening to this song and fell asleep listening to it on countless nights. It was part of Kenny Loggins' "Return To Pooh Corner" album, a mix of children's songs he put together many years ago, although the song originated elsewhere.
When my kids were babies, I spent a lot of time singing this song to them as they drifted off to sleep in my arms, some of the most precious moments I've ever had in my life, and memories I'll cherish for as long as I live.
This evening, I found myself listening to that song once again, but this time I had tears streaming down my face as I snuggled up with Isaac. We were in the movie theatre and, of all people, Kermit the Frog was singing away to "Rainbow Connection" on the big screen in front of us. Isaac was weeping because it was a sad part in the movie (he's always been an emotional soul), and I was weeping because of the news we received yesterday regarding Isaac's health.
For the past year and a half, we've been thrilled by the fact that things with Isaac have stabilized - for the first time we finally felt like the symptoms of his disease had stopped progressing - we'd halted things where they were. On Friday, all of that came crashing down on us as we got word from Isaac's cardiologist that his heart has become enlarged again. We've been through this before - Isaac's been on heart medication to stop his heart from getting enlarged for a number of years. Up until this point, the medication has worked. In fact, over the course of the past few years, his heart has shrunk down to it's normal size again. But yesterdays news was earth shattering for us. For some reason - the meds are no longer working and his heart is now 25% enlarged again, and we don't know why.
We've been told that it could be due to valve leaks - we hope this is the case. In fact, this is the best case scenario at this point and, for the time being, we've switched his heart medication to another type in an attempt to stop the heart from becoming enlarged. We hope and pray that this will work because the other reason for the enlargement is so much worse - cardiomyopathy or, essentially, the beginnings of heart disease/heart failure. Facing your own mortality is scary; facing the mortality of one you love is devastating.
For the first time in a long time, I'm scared again - devastated - and I feel like I have the weight of the world on my shoulders. And I feel helpless. Helpless because I don't know what I can do to make this better for Isaac; I don't know how to save my little boy.
For now, we're going to redouble our efforts with The Isaac Foundation and work as hard as we ever have in order to find a cure for Isaac. Our research project that we're currently funding has been shown to get into the hearts of those effected - could this be the hope we need? Is there another project ready to be started that can help Isaac's heart? All we have are these questions, but it's a place to start.
It may not help but please take a moment to send this blog on to anyone you know - you never know who's reading and can help out. You never know what might be. I've always been a dreamer - maybe this entry will find it's way to a million people. And maybe each person will find it in them to send our Charity 1 dollar. Research projects cost a lot of money, and maybe that money is all that stands in the way of us saving our little Isaac. It seems like a big dream, but it's all I've got right now.
If you can't send this along, please take a moment to keep Isaac in your thoughts. The support we get from around the world has been, and continues to be helpful, and we could use the extra thoughts right now.
I'll update when I know more - hopefully with good news. For now, back to the grind raising money and awareness about this devastating disease; back to finding a cure for our son. Someday we'll find it - the Lovers, The Dreamers, and Me.
With Love,
A.
