So, I was nervous. Her kids and our kids played during the interview and we had to stop several times to quell some small uprising or solve some preschool girl crisis.
Well, all the questions were very straightforward and I should have been able to easily answer them but I couldn't. Questions like "So, have you decided where you will be pursuing treatment for the baby? What are you going to do with your older children while you are with the baby? Will you get the surgery or put him on the transplant list? How long will Macsen need to stay in the hospital after his first surgery? What will his care entail once you are able to bring him home?" Some questions we'll be able to answer in a few weeks - once we meet with the team from Atlanta and see what they think they can do to help Macsen. Some things we can plan after that decision is made. And some things, many things, we just can't plan for - just can't know until we're right there - living it.
That's tough - that open-endedness... all the what if's. The worry was on again yesterday - the fist of dread that squeezes my heart until I want to vomit.
I was blue - again - and trying to shake it off and then I get this message on FB.
Mission accomplished! Thank you God and the Universe for this - seems like when I am at my lowest point thinking Macsen can't make it with all that is stacked against him someone sends some Hope to me.
I also really want to thank our friends and family that have been sending us funds to help with Macsen's care. Your generosity and love keep us going too and we know we won't be able to do this without you.
Hi there. I found your blog via my sister. I wanted to share my story with you. I was born with 3 holes in my heart the size of quarters. Needless to say, there wasn't much of my baby heart. Then in the 80's they made my parents and wait 18mos before they would preform the open heart surgery that would close my holes and implant my pacemaker. I was a bit of an experiment. I had lots of surgeries as well growing up. I pretty much spent my first 5 years at CHKD.
ReplyDeleteI'm 30, and doing well. I'm on my 7th pacemaker and going strong. I've had a lot of health issues growing up. Oddly enough it wasn't always my heart. I had seizures, but that was because of a faulty pacemaker, hoshimotos, factor 5, pulmonary embolisms. Ok, I know this isn't quite a pick me up. But it is my life, and I relish this life of mine.
I wanted to let you know, that while it wasn't easy. I honestly don't remember much. Which is probably a good thing. I don't remember being in pain, I remember many doctors and I remember not getting my way.
Rather then being depressed about everything that has gone wrong, it has made strong, resilient, and I'm ever so happy to be live. I live every day like it is my last, and it has made me care free. I dance, sing, and laugh unabashedly.
I had a horrible pregnancies, so much so, that I had 5 doctors try to convince me to abort, and my first child was born blue. Then to find out that they have autism. But you know, I wouldn't change it for the world.
Currently I am doing well. I garden, paint, bead, bellydance, autism advocate, blog, and my kids doing so well, they surf, they are apart of NASA's robotics, and are homeschooled.
I guess my point is, while this life you are embarking on isn't quite "normal," it doesn't mean it has to be sad or horrifying or joyless. A lot of pleasure can be derived from pain. And it is the hard times that define us. It will make you stronger, determined, and appreciate life like you never have before. I wish you and yours all the luck in the world.
All my love
Zoila Nusbaum