I'm interested to know....everyone has a story. Life is a big story with many many chapters. Tell me about the most difficult part of your story.
For me, it's been acceptance. I was talking to a fellow mom (2 completely typical kids) recently, and she was asking about Em's journey. I've only known her for a short time. While I was telling her all of the medical mumbo jumbo it hit me....that was definitely not the most difficult part of the journey for me. All of our medical stuff happened so fast and furiously. I mean Em had 7 surgeries in the first 7 months of her life including a liver transplant. Through it all I remember praying to God, "Please let her be normal if she survives this". 5 years later it still makes my heart shatter thinking of those very dark days. We made it through transplant...it was pretty rocky but we made it. Did we make it to normal??? No, no we did not. Really, when I finally allowed myself to realize that we weren't going to find "normal"... that is when I hit rock bottom....and it has taken me a long long time to dig out of that hole. I think some days only my eyes are sticking out of the hole...taking a brief peak. I know that we are going to make it in this world. It's very different than I had ever imagines, but life is good.
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Its definatley the acctepting for me, Im not there, then I am, usually im not. The NICU, all that was hard, but this not having normal thing is that hardest. and the no sleep on top of it all. I quit!
It's getting easier, now that Natalie is nearly 3. The first year was the hardest for me: both accepting and the myriad of doctors and therapies...can you believe we have fewer of both now? I know there will be ups and downs, but it helps that Tom got to acceptance much faster than I did, so he pulls me along if I'm lagging.
I need to write up Natalie's story for a sidebar for our blog...something to do.
I am okay with the acceptance. It is the future that really freaks me out. Like when I am old and not able to care for Will, what will happen to him. The uncertainty about his future and our future is the hard part for me. You know what I mean?
Accepting for me has been hard. I have good weeks and bad weeks. Letting go of what I hoped for and accepting what I have. And feeding issues! I realize my mood revolves around how well he ate during the day and if he threw up or not.
I also find the future to be my biggest challenge. Like Myssie said about who will love and care for my child when I am no longer here. My heart feels so heavy when I allow myself to think about it. That is when I have to choose to trust God. My favourite quote is "never be afraid to trust an unknown future to a Known God" by Corrie ten Boom (who lived through the Holocaust, witnessed her sister killed in the concentration camp). I still battle to be completely at peace about it though - I think it is a process.
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