No one is guaranteed a tomorrow. I know this, but I don't worry about my tomorrow, Darren's tomorrow or even Alyssa and Jackson's tomorrows. I do worry about Matthew's tomorrow. I do worry that I will lose my sweet baby Matthew. Not all of the time, but it creeps up on me.
I don't believe I'm just being paranoid. With his large chromosome duplication, Matthew might not have ever made it out of the womb. But he did! His midgut volvulus malrotated intestines could have lead to him being taken too soon. But we found it, fixed it and he wasn't! Then if his heart defect hadn't been fixed when it was, his heart could have just stopped. But it didn't! Then he almost bled out on the table during his skull surgery. But thanks to the blood of my dad and our dear friend Peter, he didn't!
Most of the time it isn't in the forefront of my mind, but every so often I'm reminded. Like when I think about the article that I was given when we prepared Matthew for his first surgery (July '10), where the little boy with a similar 4Q duplication doesn't make it to age 2. And I wonder why the geneticists don't let us know the outcome of the other little boy with Matthew's exact 4Q duplication (did he make it?!?). Even yesterday I was blog surfing (hitting "next blog" from our blog, it changes daily which blog it takes you to), and the first 5 blogs I read were about children who died. I wondered if God was trying to prepare me by reading their stories.
But I mostly worry when I look down at Matthew when he's sweaty, and I'm taken back to September when his heart was failing, and I pray "Please God, keep Matthew's heart strong." When I notice that Matthew's color looks a little off and I worry about his lone kidney and I pray "Please God, let this just be the lighting. Please keep Matthew's kidney healthy." When I prepare for Matthew's next surgery and think back to all of the unexpected issues he's encountered with anesthesia and I pray "Please God, help him wake up and breathe after his procedure." And even in our everyday, if Matthew sleeps a little longer than usual, I remember that his heart issue (LVH) is one of the most common causes of sudden cardiac death, and I pray "Please God, please protect my sweet baby Matthew."
Always in the back of my mind, I'm fearful of losing Matthew too soon. I know that he'll be made whole in Heaven, but I'm selfish, I want him here with us. The silver lining of being fearful is that I'm unbelievably appreciative of today. That fear gives me perspective I wouldn't have had otherwise. The next stage, next day, next hour with my beloved, my kids, my family and my friends is a gift. And for that I'm thankful!