Explain why my baby can't cry...unlike what you think I am not being a "helicopter mom"...I am simply making sure my baby does not stop breathing.
Explain that although she looks "great" she has a congenital defect and needed major airway surgery...and now has something wrong with her heart and brain because of this...dumb defect.
Explain why she can not be left with anyone who is not ready and willing to do CPR on her... it's not that I deny babysitters...I can't...and I don't want to... leave her.
It wears on me... but I know I am not the only one. There are days when I am exhausted. Not exhausted from not sleeping... exhausted from Laryngomalacia. Exhausted from waking up in a panic to make sure my baby is still breathing... exhausted from the numerous doctor visits... surgery... medication... the medical bills... the monitor... the home medical team...all of it.
There have been moments through this journey when I have had to stop... look out my window and ask for more patience and find more strength within myself. I have seen my baby stop breathing.. turn blue and purple...daily... since the day she was born and words can not explain how physically and mentally draining that is...{unless of course... you have been there... then you know exactly what I am talking about.} And somehow I am able to find what I need to get through the day...I am able to give my baby what she needs to get through the day.
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