It’s Not Fair

Today, I tried switching up the routine again. I was afraid that Hana’s morning meds were possibly bothering her stomach, so we switched up the feeding med routine. Ultimately, it resulted in Hana vomiting. Tomorrow I will try another combination, hoping that something will inspire her to eat real food. She has even started refusing yogurt and prunes. She just doesn’t want anything even close to her lips. We still try videos and dolls, but maybe it is time that will be the answer.

Other than that, it was a pretty typical day. Paul and I are preparing to talk to the heart failure/transplant doctor tomorrow about some questions we have regarding when to list Hana for a heart transplant. This evening, we reviewed the information that they gave us at Stanford. It makes me cry. You look at the statistics and it makes you cry. You look at complications and it makes you cry. You look at mortality rates and post-transplant care. The problem is in the numbers. 93.9% survival rate one year post transplant. That sounds pretty good. Except that you have once already found yourself in the very, very slim minority. Your baby is already that very rare case that is the 0.0001% or whatever it is for babies that need heart transplants. You know just how easy it is to be that 6.1%. Or, four years post-transplant, how easy is it to be that 30% that doesn’t survive. It doesn’t feel fair.

I try to not dwell on fairness because I know that it is irrelevant. But my heart is not logical. You ask, “Why my baby? Why my only baby, my only child.” Of course, this is silly to think this way. It is just not the dream I had for Hana.

I wonder then, what dreams Hana has for herself. I wonder why, in this life, in this time, why?

But she is such a sweet, sweet soul. Even when she refuses to eat anything by mouth, she is sweet and strong and determined. It is the greatest honor of my life to be her mother.


I’m hoping to inspire Hana to eat by inviting her friend to mealtime!!




3 thoughts on “It’s Not Fair

  1. I want you to know I think of you and Paul and your darling daughter every day and hope for the best. Be strong knowing you have lots of love pulling for you guys and trust that the path you take is with the intent of a bright future. Big hugs speckled with a few tears from back east. SWG/VBC

    Liked by 1 person

  2. It really isn’t fair and it’s okay to think that way sometimes. You seem good at keeping yourself positive and being optimistic. You are allowed to have moments to mourn what you expected life to be like. Keep doing what you’re doing. Your family is an inspiration!

    Liked by 1 person

  3. Very nice post today. Each of us has a special burden we wouldn’t wish on another. We may know about each others’ burdens; we may not. With the difficult times, there will always be good times. We need to remember that. To a certain extent, I think there is a “plan” for most of us.

    Liked by 1 person

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