So today was a good day. It started out sad and depressed - will the baby even make it to birth, what are his chances of making it 40 weeks, what will our life look like in 14 weeks, where will we live, where will my daughters be, will this break us and right back to will he make it to birth?
But enough of that - I've had enough of it. I can't live like that. I just can't continue to function thinking he may die at any minute - or not - or maybe - or not. Ahhhh! So this is what I am choosing - he will live. He will make it. I know some would argue to "expect the best but prepare for the worst." But how do you do that in this situation without getting bogged down in the worst - losing your child? So I'll acknowledge the worst - Macsen has a 50% chance of dying - but dwell on the best - that he has a 50% chance at living a really great life with us! And that's it - let's move on!
Great things that happened today?
Our friends and family are amazing! They had a big meeting today to brainstorm ideas on how to fund-raise for us. Humbling to have so many great people working on our behalf - trying to help us so we can get the very best odds for Macsen. They have all kinds of ideas like Zumbathons, 5K Fun Runs, Spaghetti Dinners...
I found this Blog - http://wodzisz.blogspot.com/ And I really think I was guided to it. I can't even tell you how I found it. All of a sudden I was just reading this story about a little girl, diagnosed with HLHS that wasn't supposed to live. I went back and read her mom's posts from 2 years ago and how the doctors had very little hope she would make it to birth or even be strong enough for the first open heart surgery. And here she is today - thriving. And her name is Hope - of course it is.
And the last great thing? As my husband was leaving for work he said "Oh, I meant to tell you _____ told me he's not a prophet or anything by any means but he just has a really good feeling about Macsen - that everything is going to be ok." Why does this bring me such comfort you ask? This feeling a friend of ours had? I don't know. It just does :) Sometimes it's best not to examine every little thing and just accept.
I am so glad my blog is providing you hope. I have seen so much in the last 3 years and it is amazing how many miracles you can experience through other people and within your own life. This journey has taught me so much and it will definitely do the same for everyone that gets to know Macsen. He will inspire so many people with how strong he is and the odds he can beat. Heck...I never realized how amazing it was just to be born. My boys were so easy and I took my pregnancies for granted...along with their births. You will experience the shear joy of giving birth like never before. Always remember that you are the one paying the bills and do not let anyone tell you that there is no hope until you have talked to at least one other doctor. I didn't know that when Hope was born and the hospital we had her sent to told us there was no hope and that we should take her home and let her die. It was at that time that I realized doctors don't know everything and there are other doctors that are much more hopeful and helpful. Macsen is unique in his physiology (I can tell you that in 3 years I have never heard of a heart quite like his), but he is also so strong to have made it this far. Doctors are amazing and can do so much for our little ones. Even more exciting is the possibility for the future. Imagine that 30 years ago our little ones would have NO chance at all. I like to imagine what will happen in the next 30 years...or hopefully sooner.
ReplyDeleteI will be keeping up with your blog and following along your journey. You and your whole family will remain in my thoughts and prayers every day.
By the way...Hope was actually named after Hope Brady from Days of our Lives...before we found out about her heart. It was just meant to be her name...amazing how life works that way!