I look at my daughter each day and thank God for her and another day of blessing with her. I must be a strong Momma for her, never showing my weak side, or let on that her time is so much more precious because she will likely leave me, our family, sooner than we'd like.
For years I have been in denial. Cora is doing far better than her cardiologists would have ever thought, but things are still off. That leak still persists, those moments of breathing troubles and blue lips still occur. The palpations that come on from no where, creep up more often. And that little cold seems to rear it's head more often. I use to solely focus on keeping Cora cold free. Without an immune system she takes risks each day she leaves the house. For that matter, each person she comes into contact with. But for Cora it's just another day as a preteen. She knows something as little as a cold could be devastating to her, but she pushes forward. I have been upfront about her setbacks, her oxygen stats, what a common cold could turn out to be for her. But I haven't, and decided not to burden my 12 year old daughter with the discussion of premature death. My hubby and I try daily to teach her about her faith and the trust of God. The glory she is to him and us, and that someday everyone, including her will return to our home, with God and Jesus.
So to answer the question, how do you process the short life expectancy of your CHD child and carry on each day with this information? I bury the knowledge deep down, I let my daughter be a kid, and put my fears, tears, and heartache in my faith, and the Most High God!!
Blessings until next time!
Drena
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