Life is your canvas and each new day is a stroke of your paintbrush. What will your masterpiece look like in the end?
Catching Elephant is a theme by Andy Taylor
Someday We’ll Find It…
“Someday we’ll find it, the Rainbow Connection - The Lovers, The Dreamers, and Me.”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.
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 Loggin’s “Return To Pooh Corner” album, a mix of children’s songs he put together many years ago, although the song originated elsewhere.
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.
No one wants to die. Even people who want to go to heaven don’t want to die to get there. And yet death is the destination we all share. No one has ever escaped it. And that is as it should be, because Death is very likely the single best invention of Life. It is Life’s change agent. It clears out the old to make way for the new. Right now the new is you, but someday not too long from now, you will gradually become the old and be cleared away. Sorry to be so dramatic, but it is quite true.
Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma — which is living with the results of other people’s thinking. Don’t let the noise of others’ opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.
Steve Jobs (via clarajudgypants)
Yes yes yes. This is what I remind myself every day when I contemplate chasing the music dream. Life is too short to settle for status quo or what’s expected. It might be scary, but what you love and want is inside you. I’m telling myself every day to go for it (even though it does scare the hell out of me!!!).
(via blairsings)
so.
if you have ever tumblr’d with a purpose, now would be the time.
The Kottwitz family needs your help. They are up for nomination to be on Extreme Makeover and this is not just for a sweet new house. This is a house that they need to make it day to day. For their kids to make it day to day. See, the family has 3 children that are diagnosed with Cerebral Palsy. This means that every time you hear your mother yell “brush your teeth”, they cannot comply. Everything from bathing to crawling in bed needs manual help, and with both the parents working full time to afford their children’s supplies, day to day life is nothing short of a battle.
I know, sounds like a Sarah Mclachlan commercial. But it really is not. If you enjoy tumblr for the beauty of spreading worthwhile messages, please reblog. I mean, I have practically no followers, but I know you all do.
vote. reblog. reblog again. tell your friends. tell everybody. They have until March 31st to get a fresh start at life. Be the change that this family needs.
I usually never reblog these types of things, but this is a great cause. A few of the kids I volunteer with has cerebral palsy and I could not think of a family more deserving for this.
(Source: sisyphus-happy)
Help Elisa And Nathan In Their Joint Fight Against Cancer
A friend linked to this couple’s blog on her Facebook page and I would like to share it with anyone reading here. They are Nathan and Elisa, they have a young daughter and live in Bay Ridge, and they were each diagnosed with cancer within weeks of each other last month: stage 3 rectal cancer and stage 4 breast cancer.
Go to their site, read their story and offer up a donation. If you are on Tumblr, please reblog this and share with others.
Do not spoil what you have by desiring what you have not; remember that what you now have was once among the things you only hoped for.
Fear
Hey Fear! I really hate you!
Been Thinking
Having a point to make doesn’t always mean having to make the point.
my stupid mouth: Reblog if you don't give a fuck about sexual orientation, as long as that person is happy, that's all that matters.
It’s not gay marriage, it’s equal rights.
If straight people don’t want gay couples to get married because it will “hurt the sanctity of marriage (their horseshit, not mine), then straight people shouldn’t be able to divorce.
The divorce rate in this country, causing children to deal with broken…
