Friday, May 15, 2009

wait for it....

There it is... that nice calm exhale... *phew*

We are living in the exhale. The calm sweet easy part of life. I spend my days doing nothing really, just watching Yale grow up. How great is that? I know not many of us will admit it, or really talk about it, but it has to be said. Heart moms are constantly worried that their babies will die. Its really a hard concept to grasp, but its quite true. When you think about worry in the normal sense, like you are worrying about paying bills, or what to eat for supper, those worries aren't 24/7. You can get distracted from bills... Heart moms worry their babies are going to die. 24/7. It never stops. When I think back to what it was like with Yale from his birth to the day he got his heart transplant, I probably let go of that worry for a total of two weeks... the two weeks after his glenn before the function problems came around. It was tiring, and burdensome and really a horrible way to live.
Today I played with Yale and I put him down for his nap SURE he will be there when I go to get him when he wakes up. No longer do I worry he may never wake up from this nap.
I was visiting Jen and Gabe in the PCCU.... laughing with her about how wierd it is to not know how many diapers Yale makes on a daily basis. I used to be obsessed with pee. Is yale peeing? how much is he peeing? It was the number one sign I watched for to be sure of his health. Everytime he was flown to sick kids or admitted to sick kids or LHSC, it all began with less pee. Today, I have no freaking idea how much the kid pees... Thats right... i've stopped being the hyper vigilant heart mom.
I hate to say these things out loud, worried about jinxing them.... but right now.. I have to say, I'm fairly confident Yale will be around for a while. Its true. I know they warn us that this is just switching one set of health issues for another, but man oh MAN.... am I ever happy with this set of worries... I sleep at night. Yale might cough through the night.... and I just listen. I don't get up and go into his room and turn on the light to watch his color.... thats over now.

Yale has taken to babbling and using his hands to make big animated gestures when hes talking about something exciting to him.... My kid is growing up. I'm sure every mom will agree with me, pretty much when you learn you are with child, you dream and imagine the whole length of a life with a new child. watching them do everything you did again for the first time. When I got Yale's heart diagnosis, I stopped. They wanted me to kill my baby, or he would be lucky to live to be one year old. I've started dreaming again.... about Yale's first day of school, and sporting events, and teasing him when his voice cracks during puberty... we have our lives back.

I really hate that we cannot have contact with the donor families. I mean we are welcomed to write correspondence back and forth. but its through trillium, and we cannot use names or have any means of getting into contact with one another. I really REALLY wish Yale's donor family could watch this blog. see what they have done for complete strangers. WOW... what a blessing and gift that family is! I plan to keep this blog going as long as blogger is going... and i'm actually contemplating putting each year of posts into books for Yale... the book of Yale... as told from mom... Wow... I'm sorry and I know this post is really rambly and confusing... but really... I just had a lot of feelings I had to get out and share.... and maybe seeing this one person will decide to be a donor. Look at how much can happen... and I know for a FACT Yale's life wasn't the only life that was saved that day!


Anonymous said...

We don't know each other but I'm constantly inspired by you, your family, and your story each and everytime I log on to this blog -- I'm so happy things are going well for you all.

Anonymous said...

Wonderful, truly wonderful. We weigh Owen's diapers at home still. I can tell you his total ins and outs on any given day. I can't wait to be where you are...exhaling.

Laura Veloso

Yale's grandma said...

You inspire me my daughter by your strength. I can never know what you have gone through with the constant threat to your child only watch and try to support you when you need it. Both you and Tyler are amazing parents. I think Yale was given to you for a reason and maybe that reason is to shed light on CHD and the need for people to have compassion for others and become donors. My grandson is a miracle and I truly thank the family who in their loss made it possible for another child to live and we will be grateful forever to watch him grow up. People you don't even know read your blog to follow Yale's story and get hope and strength from you. This is no small thing so keep up the good work.

Love always