I have been gifted 3 journals since finding out about Noah’s heart. Many times I have opened those journals and started to write, but to no avail really. Do I really want to remember the pain and suffering associated with this season of my life? Do I want to even take time to really think about how I feel and then share those thoughts with the world? Does the world really want to know what a hurting mom thinks and feels as she pleads to God for her son’s life?
Tonight is the night that I start being honest. Honest with myself and honest with the world. I am hurting. Every inch of my being aches all. of. the. time. and I cannot wait for the day when Noah is thriving and I can breathe again.
Two weeks from tonight I will be sitting by Noah in a hospital room on the 6th floor of CHOC. I will probably be on my knees. The CD that played on repeat when Noah was admitted for 3 months will be playing and Sean and I will be alone because the hospital is on lock-down. Noah will have two surgeries down and only one to go. And while I will be so thankful for the fact that we took a giant step forward, the recovery will remain a mountain ahead.
Our first Hypoplastic Left Heart brother went to be with Jesus on the night following his Glenn. Yes of course, every person and surgery is unique but for this mommy, this big step is difficult. I think about that baby, Noah’s heart brother, almost every single day. I have never met his mom, but I know her … oh boy do I know her. I live with the same hope, fear, excitement, concern, and joy that she once did and it is wonderfully difficult all at the same time.
I am learning to be thankful for the challenge of living with CHD because each day that I stand up to the difficult, I stand with Noah.
My understanding of God and His love for me is changing. I know that we all have a story and to some degree we own what is written; after all we do have free will … but what I am beginning to understand is that we are on earth to bring God glory and there is a large part of our story that is sacredly His.
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