Things have been uneventful! We have everything set up for transplant. Bags packed, transportation, backup transportation... the only thing is the move. Once we get our stuff into our apartment, I am READY to go. Yes, yes... I do know God has His own plan. I'm just PLEADING with him to let me at l east get the boxes in the door before I go!
A random funny... when we speak about Gabriella getting her new sparkly heart, her immediate response is her own special explanation about how she will be able to ride roller coasters again. That girl... she is a FIRECRACKER!
We went to monthly Cardiology visit Monday, and love going in to see all of our friends! Dr Alhadheri said everything was stable with last month. Her enlargement was the same, the mitral valve leakage seems to be the same, the function is the same. THANK goodness. Same is SO much better than decreased or worse. I mentioned to the ECHO tech that I am still sitting on hope for a miracle. She wasn't sitting on my same thought pattern, and said that deep Myocardial Bridging she has isn't going to get any better. I am sure her heart is going to be an interesting one to study post-transplant! As I have said in the past, the 'heart failure' with Restrictive Cardiomyopathy is not a slow failure like some other heart conditions. It's typically not a slow failure. The main and most common symptom in kids with RCM is sudden cardiac death, so every day her heart stays the same is another day we are clear of THAT symptom. And once we get this new sparkly heart, there will be no more fear of loosing her suddenly.
That being said, I have had fears of that lately. I have been plagued with fears and thoughts of loosing her before her heart comes. And I have had extreme heartache for the donor family and what they will inevitably experience, when thinking of losing my own child. The thoughts in my head have been overwhelming. I know, and have experienced many times in life, that the more you draw closer to God the more the devil wants to intercede. And I know the fears and negative emotions I have been feeling is just that. I turn it into positive and find myself praying multiple times during the day for the donor family. Praying God give them special moments to hold onto. Praying they take lots of pictures as a FAMILY as a normal habit (I am a huge family picture advocate, being that I lost my dad at 13 and had few pictures with him). Praying that whomever this child may be, that they do not suffer in the end moments of their life. Praying that the donor family has a faith in God, not because of us but because of the comfort I personally know a personal relationship with God can provide in loss. Praying for the mother's heart who will be robbed of her time with the child she grew in her womb.
There will be times when my excitement and joy of Gabriella's new life will just overflow, but it will never be without the grieving in my heart for the donor. Just as my excitement for Mason and Penny getting their hearts this past week has been joyful. But there is few more aware of the loss it took to make these little lives thrive than Mason and Penny's parents... and we will be soon to join in experiencing what this means.
1 comment:
I'm sad we missed seeing you Monday! I would have loved to meet you and Gabriella! I'm so glad to hear that everything is stable.
Thank you for sharing your thoughts on faith in God. How would we get through these difficult trials without that faith? Your Gabriella is lucky to have a Mother who does have that faith and is teaching her how to have faith as well. Thank you for your example!
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