Jacob - Part Two: Jacob's Journey
So, we had sent off our tests to the NIH lab early in the summer. We were told it would take about 8 weeks for results, so we tried our best to put it out of our minds. Finally, in mid August, we got our results. Jacob was a full match and Sam was not a match at all.
Despite that actually being good news, it didn't feel like that way at first. It hit me pretty hard. I don't think I had really invested in thinking about it too deeply. I didn't want any of my kids (Aaron included) to go through this and so I just didn't really think through any of the implications that summer. But I think somewhere, subconsciously, I had been expecting the donor to be Sam. I think Isaac felt similarly and honestly, probably Aaron & Sam did as well.
As the younger brother in their pair, Sam has always been the helper. At two years old, he would put on his own shoes, then turn around and put Aaron's on for him. He would be the one to go and get the snacks. He would be the one to compromise when they played games. With Sam at his side, social situations were easier for Aaron. By virtue of homeschooling, they spent all of their time together and Sam was always the easy-going one who made their friendship possible. I think we all expected Sam to be the one who would help Aaron now as well. And I know that he would have, gladly, if the opportunity had arisen.
But that wasn't the plan. Instead it was Jacob. Jacob, who is younger and smaller and more unaware of what is at stake. Who is terrified of needles or any discussion of blood. Who I had to physically hold down for a flu shot. Who is not easily convinced to do things that he doesn't want to do.
I should stop there because that was another huge concern that Isaac and I had going into the process. We felt really strongly that none of our kids would feel compelled to participate as a donor. We really wanted to make sure that we didn't manipulate them into feeling like they had to do it. We wanted it to be their decision, made with free will, and that they would never look back on it and feel like they hadn't been able to choose for themselves. We really didn't know which way that would go for Jacob but we wanted to leave room for him to say no if he wanted.
We spoke with Aaron's therapist and got really great input on how we could approach Jacob with the news. We knew he only had a limited understanding of the situation and we felt like it was important for him to fully understand before committing. She encouraged us to help Jacob think of it as a gift - an opportunity to help his brother in a way that no one else could. We asked everyone we knew to pray for us as we prepared for our conversation with Jacob. His fear of needles and blood, combined with his immovable spirit caused me to really wonder how the conversation was going to go. We really wanted to make sure that we were as prepared for the conversation as we could be and willing to accept any outcome.
By mid-September, we were ready to tell Jacob. We took him out, just the three of us, for water ice - his favorite. We sat him down and we explained the situation as clearly as we could. You know that Aaron was really sick. You know that it was because he has a disease where he can't fight off some bacteria. Did you know that there's a way we can fix it?...slowly, we unraveled the story for him. We explained that he was the match and that he had the opportunity to help Aaron, but that if he didn't want to do it, we understood because it was really scary.
At first, he cried. He was afraid - rightly so - and didn't want to entertain the idea. But literally within moments, he stopped himself. A look came over his face and I saw him draw on that iron will within him. He asked if he was only one who could help Aaron. We told him he was the best match that Aaron could get. Then, he said something like "it sounds like it would only hurt me for a little bit, but I can help Aaron forever. Okay, I'll do it. I'm going to be Aaron's hero." It brings tears to my eyes, even now, to remember him in that moment. He left that conversation really big on the idea of being Aaron's hero (and the potential for fame that could bring him). He said several times that night "I'm going to save Aaron!" "I can't wait to tell my friends that I'm going to be a hero!"
And his commitment has not wavered since then. We could tell that it was heavy on his mind. We were driving home from North Carolina, right after Thanksgiving, when he asked me if he could have a comma for Christmas.
Me: A comma? What do you mean?
Jacob: You know, when you go to sleep for a long time and then wake up?
Me: Oh, a coma. Why would you want a coma?
Jacob: So I can sleep through the transplant.
Me (on the outside): No, sorry bud. You can't have a coma until the transplant but they will put you to sleep when they need to take your cells. You won't know it's happening at all.
Me (on the inside): Not a bad idea...can I have a comma and wake up when this is over too?
We could tell he was trying to fit the pieces all together. He would ask things like: is the transplant before or after Disney World? After. Is the transplant before or after Easter? After. Is the transplant before or after my birthday? Before. GULP. His eyes got wide but he never expressed any desire to back out. He marked the calendar in his mind and marched steadily on towards the date.
Did he love the needles part? Nope. But speaking as someone who was terrified of lab draws until around my fourth pregnancy, I'm not going to hold that against him. Is he now notorious in the CHOP recovery room for trying to escape while still hopped up on anesthesia? Maybe. But he did it. HE DID IT.
Is he a hero? Absolutely. He walked straight into what is probably the scariest thing he could imagine and he did it anyway. What's more, he did it all for the benefit of someone else. It's hard to believe that much courage lives inside such a tiny body but when I consider the force of his immovable spirit, it makes a lot more sense.
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