April is National Donate Life month. What this means is there is a campaign to increase the awareness about the amazing gift of organ donation and to encourage more people to register as organ donors. If you are reading this blog then you are probably already aware of what the gift of a donor heart would be for Hana and our family. This month, I will be adding some support for this cause in addition to our usual updates. We would like to encourage anyone who is not already a donor to register! If you’d like more information, please read the “Why Be A Donor” page from the Donate Life organization.
The thought of becoming an organ donor is not a pleasant one, especially if you take a moment to consider if you would donate your child’s organs. I hope that moment never comes for you. To consider organ donation at a time when your child has been pronounced brain dead and probably in a situation that was a tragic shock, must be very difficult a midst overwhelming grief. I mention this because this is what a family will have to do someday when they make the choice to give the gift of life for Hana. I want to honor them, their choice and the memory of their child by really trying to feel what it must be like to be in their shoes. It is about human connection. This donor family understands what a gift of life would mean to a family and rising out of their grief they can hope to alleviate some suffering.
Paul and I are both stubbornly independent people, so to talk about this need of a gift of life for Hana is out of our comfort zone. While I imagine anyone would feel uncomfortable, I think for me, I try so hard to “do it all myself” and “not rely on anyone”, and now, here I am, totally and completely dependent on another family choosing the gift of a donated heart. For our daughter to live, some family must make that choice. We will be forever indebted to them. It is no longer good enough to just “Live and let live.” Now, I feel like “Live and help live.” I also see this as a chance for greater human connection. This is why I write this blog. This is why I encourage you to register as an organ donor and to help spread the awareness of organ donation. It’s about a level of human connection.
If you are interested in helping to spread the word, please let me know! Stay tuned for more tomorrow.
Now, let’s talk specifically about Hana. She is doing great! I’ve heard them say she is the Poster Child of a Berlin Heart. She is getting around and developing normally. Of course, she is still delayed in that she is not eating and must be NG tube fed. Monday afternoon she starts her next round of IVIG therapy. I hope it goes smoothly like the last two times. More than that, I hope it continues to help suppress her antibodies so that she can match a greater number of donor hearts. A couple days ago, Hana received a package from my mom. In it was a cabbage patch doll that we had at home and used as a “guest” during our home feeding sessions. This doll already had her own NG tube but now she has her very own Berlin Heart! She also has an outfit that matches Hana, all thanks to my mom!
136 days in the hospital, 118 days post-Berlin Heart, 110 days on the transplant list.