I grew up in a household where every victory was celebrated, even if it was just with a giant bear hug. This made each of our accomplishments that much sweeter, because they were acknowledged.
In the medical realm, we can’t always guarantee victory, no matter how much effort or hard work we put into maintaining our health. That can be a hard pill to swallow, especially for a child. Even when we do everything right, sometimes things just go wrong. That’s why I still celebrate all of our victories. When things do go right, it really is cause for joy!
Last year, after N stabilized on his Berlin, they were finally able to extubate him (remove his breathing tube). We celebrated this victory as a family by going out for pizza while they were performing the procedure. I was then allowed to hold him for the first time, by myself, since his second cardiac arrest. I had gone seven weeks without holding my baby, and now I was finally able to cuddle him. He was on sternal precautions, and he still had a PICC line, several IVs, wire monitors galore, and, of course, his Berlin tubes. But it was so very worth it!
This was the evening of April 9th, 2016. Later that night, I asked one of his nurses if she thought he was getting strong enough to survive a transplant surgery. She said that he was doing far better than expected, and she told me “If the team found a perfect match, I don’t think they’d turn it down.” I went to bed hopeful.
But through the night, I was awoken dozens of times by doctors and nurses conducting ultrasounds on him, because his lung had collapsed, and he was struggling to breathe on his own without the help of the ventilator. I spent the entire night fighting the feeling of failure. We had done everything right, and yet things were still going wrong.
That morning came slowly. Once N recovered, I decided to finally try to get some rest. For the first time since we had arrived at Shands, I silenced my phone. I hadn’t dozed off for more than a couple minutes when our nurse came in and woke me. He told me I should answer my phone. My first thought was that my husband and my parents had been trying to reach me and were panicking, but I had let my mom know that N was fine and I was taking a nap. Who on Earth was calling?
It was our transplant nurse, telling me they had a heart for N. All I could do was hug our nurse and weep. Our wait was over. My N would be saved. They said the match was just “too good to pass up, even with his lung being weakened.” They’d “fix it while they were in there.” We spent the entire day by his side, praying we didn’t get another phone call saying that something bad had happened with the heart. We never got that second call, and everything went smoothly. Sunday, April 10th, we received our miracle gift. N pulled through the surgery like a rock star. We were told he even opened his eyes on the table and looked around the operating room when they had finished. Needless to say, we celebrated!!
Today, one year later, we celebrate N’s first heart-iversary. We celebrate being at home, and not at the hospital. We celebrate his health, his progress, and his development. We celebrate his many milestones. But most importantly, we celebrate his future, and we honor his donor’s past.
When we celebrate in our family, it usually involves my mom and me baking something. Since she’s back home with Dad, I teamed up with our awesome neighbor to make cookies for N’s daycare providers. I think he enjoyed his!
We also decided to have some photos taken, so we could see just how far he’s come this past year (Thank you Lisa at Leelee Three Photography!!).
We got out his Berlin pumps, his Berlin Bear they gave him after his surgery, and the heart all of his nurses signed for him.
Digging out those pieces of our past brought on a flood of memories and emotions, but it was a great reminder of where we’ve come from.
Celebrating your victories, no matter how big or small, helps detract from the pain of what has been and gives hope for what is yet to be. No milestone is too small when you are celebrating life. For we need to make sure that we really live life. We were given a second chance for N, and we make the most of every moment. For, truly, every moment with him is the celebration of a moment we almost didn’t have.
Much like this past holiday season, I was afraid to celebrate today, because our celebration is at the expense of another family’s loss. But I’ve finally reconciled in my heart of hearts that we’re not celebrating their loss. We’re celebrating the beautiful life of an angel, and the selflessness and love of that family sharing their angel with us. We are celebrating that their child’s heart is still beating, and that their angel lives on through N.
If your child is old enough, ask them how they want to acknowledge their transplant-iversaries. Talk to them about why these milestones are so important. Make sure they are comfortable with all of the emotions involved, and help them understand that you’re not discounting the loss of their donor, but honoring their donor’s continued life through them.
Whether it’s ordering in from your favorite pizza joint and renting a family movie, or going on an elaborate vacation, celebrate your successes and victories. Family fun brings you closer together, and it makes wonderful memories!
This post is written in memory of our donor angel. May you rest in peace, Sweet Love. You may be gone, but you will never be forgotten.
i carry your heart (i carry it in my heart)
-e e cummings