No one ever told me how to be a heart mom. Of course I had all my friends giving me advice on how to do certain things and what worked for them when raising their healthy normal child, but not once was there advice on how to care for a heart baby. During your pregnancy you try so hard to prepare, you read the books or other guides on how to care for yourself and your baby. Here is the problem, you can never truly prepare. The fact is you have to figure it all out on your own. What works for one mom does not necessarily work for another. Then there is the chance that your baby may come out with an issue.
No one could have prepared me for how I would have to care for Christian. I never thought that our routine would be centered around meds and feeding tubes, but this is our normal. Our normal though is another person's nightmare. I have had people tell me they couldn't or they wouldn't do what Hunter and I do. Trust me you would if it was your child. It is heart breaking, but when my little miracle smiles or laughs at me it is worth every single tear and the heartache. The answer would have never been to terminate the pregnancy. I mean why would you terminate a sick child; because it is not convenient with your lifestyle? Well let me just tell you that this may not be "convenient" to what we expected, but our child is just as worth having life as a healthy baby. Christian is a precious gift from God. He has made us feel more heartache then we ever thought possible, pushed us to our breaking point emotionally, but he has also renewed our faith, given us so much joy, and made us love deeper than we ever thought possible. He truly is our angel.
It is hard to see my child hurting. I hate seeing tubes in his chest and IVs coming out of every arm and leg. I hate knowing that he has a broken heart and there is no cure, only a temporary fix. I hate knowing he will have to go through 3 open heart surgeries before the age of 3. It is hard, but this is our normal.
I guess what I am getting at is next time you try to prepare for something ....DON'T. Put it in God's hands because when you do,that is when you will be truly blessed even if the blessing is in a disguise.
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