I am starting to doubt if I can go through with Jackson's next surgery. In the past week, two little babies have lost their fight. One was a friend, here in Denver. Another is a "facebook friend" on line in California. I asked Jackson's cardiologist what would happen if we didn't do this surgery. And his answer was that Jackson would die. I mean, not tomorrow. But, his half a heart would grow too tired to do all the work of a whole heart and it would give out. He would die. But, damn it, these babies had the surgery, and they still died. So, why should I? Why would I? The calendar is staring me in the face. Taunting me with each passing day that leaves us closer to surgery.
I am tired of being strong and brave. I am tired of always saying it's fine. Or I'm fine. I'm not fine. I am a nervous wreck over something that isn't even on the schedule yet. I am sick and tired and worried. I am sad and angry. And I am doubting all of this. But I know, deep down, that we have to do this. We've always said our decisions for Jackson would be for quality of life, not for quantity. Who has to have those kinds of discussions? What parents have to make those choices? Heart moms and dads, that's who.
Everyone says that god only gives us what we can handle. Well, let me be the first to say that today I feel like he's been a little over zealous with his faith in us. I don't feel like I can handle all of this. I don't want to handle all of this. I want to take Jackson and run away with him. I want to take him someplace were they aren't going to break his chest open, again, and operate on his little heart, again. I want to take him someplace where he will be safe. As his momma, this is killing me. To hand him over so they can cut him open. Again. I am not sure where to get the courage and strength that this is going to take. Right now all I can do is cry for my friends, and their angel babies. And cry for my sweet Jackson.
Thursday, December 20, 2012
Monday, December 17, 2012
Heartache and Heartbreak
I haven't blogged since Jackson was born. Updates were sent by text messages and emails and phone calls. I haven't needed a safe place to unload my emotions. Until now. You see, this weekend a heart momma friend of mine lost her little boy. Liam was only 8 months old. 8 months.
He had a similar heart condition to Jackson. They are both single ventricle kids. Half a heart kids. I met Liam this summer when I was still pregnant. Jessica opened up her home and her life to me. She told me about Liam's birth and surgery. She didn't really know me at all, and yet she held my hand when I cried. And she urged me to go forward with the pregnancy and gave me faith to continue. Over the summer I got to know her better and when Jackson was born, she checked in on me frequently. She was a good friend.
Liam lost his battle in the early morning hours Saturday. He wasn't sick. He wasn't in the hospital. He wasn't in the cardiac ICU. He was at home, with his parents. It scares the ever loving shit right out of me, to think that he could go that quickly. Without warning.
This world where babies are born sick just plain sucks. And it has existed long before I joined it and it will exist long after I leave it. It's not fair. And it hurts. And I hate it. I hate having to be a part of it. I hate having friends who are part of it. And I hate that we lose babies in it.
Liam's service is this weekend. 3 days before Christmas, my heart momma friend and her husband will bury their 8 month old baby. Where is the fair in that?
And yet, selfishly, I sit here and look at Jackson. And I worry and I wonder and I cry. It could just as easily be us, loosing Jackson. We are given these special babies for whatever time god gives them here on earth. We have the privilege of being their parents. We protect them and care for them and love them. And then we hand them back over to god when he comes and calls them home.
My heart aches for this heart momma friend of mine. It hurts for her. It hurts for the loss of her child. And it hurts with fear over the idea of losing my own child.
He had a similar heart condition to Jackson. They are both single ventricle kids. Half a heart kids. I met Liam this summer when I was still pregnant. Jessica opened up her home and her life to me. She told me about Liam's birth and surgery. She didn't really know me at all, and yet she held my hand when I cried. And she urged me to go forward with the pregnancy and gave me faith to continue. Over the summer I got to know her better and when Jackson was born, she checked in on me frequently. She was a good friend.
Liam lost his battle in the early morning hours Saturday. He wasn't sick. He wasn't in the hospital. He wasn't in the cardiac ICU. He was at home, with his parents. It scares the ever loving shit right out of me, to think that he could go that quickly. Without warning.
This world where babies are born sick just plain sucks. And it has existed long before I joined it and it will exist long after I leave it. It's not fair. And it hurts. And I hate it. I hate having to be a part of it. I hate having friends who are part of it. And I hate that we lose babies in it.
Liam's service is this weekend. 3 days before Christmas, my heart momma friend and her husband will bury their 8 month old baby. Where is the fair in that?
And yet, selfishly, I sit here and look at Jackson. And I worry and I wonder and I cry. It could just as easily be us, loosing Jackson. We are given these special babies for whatever time god gives them here on earth. We have the privilege of being their parents. We protect them and care for them and love them. And then we hand them back over to god when he comes and calls them home.
My heart aches for this heart momma friend of mine. It hurts for her. It hurts for the loss of her child. And it hurts with fear over the idea of losing my own child.
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