Normal. What I wouldn’t give to feel normal again. For my family, things will never go back to normal again. Worrying about Emerson’s heart will loom over us the rest of our lives. We will eventually settle into a new normal, but man what I wouldn’t give to have my old life back.
Days, weeks, months, potential years lie ahead while we wait in Loma Linda. We’re frequently asked “why can’t you wait at home?” Emerson requires round the clock care, and she’s hooked up two continual medicines that keep her heart pumping as well as respiratory help. While she is on these, we have to stay in the hospital. There’s no chance her heart will be able to get off these medicines. Until she gets her new heart, we need melrinone and epinephrine to keep her heart pumping strong.
After transplant, things just won’t go back to how it used to be. There will be many food aversions we have to stay away from. A new diet lies ahead for us and new knowledge of everything she will put into her body. Grapefruit is a big one. The irony is that is when I was pregnant with E, I craved grapefruit and grapefruit juice. Maybe it was a precursor of what was to come. Certain foods could mix with the medications she’ll be on and cause a reaction.
Which brings me to the medication part. Did you know after transplant a kid will be on daily medications that will total between $4,000-$6,000 a month (pre-insurance)? A month! Anti-rejection meds will be a big part of that. She also will not be able to receive live vaccines for fear it could attack her new heart.
It seems so unfair that Emerson only had 3 months of “normal”. Like she was robbed of something. You never imagine you’ll go through something this extreme. Sometimes I still can’t believe this is happening and I wish so badly I could wake from this bad dream.
No. We will never have our old normal again. Parents who have healthy kids, hug them a little tighter today and consider how blessed you are. What we wouldn’t give to have that for our girl. Thank you Jesus, for carrying us when we can’t stand from the weight of the world on our shoulders.
Tears and prayers as you walk this difficult road. Your transparent messages are touching so many lives and we are all praying for your precious Emerson, for you, and for all of your family. Thankful you know Jesus Love and His comfort to carry you.
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