There have been a lot of parenting moments lately where I wonder if I am failing miserably to raise my children with any sense in their heads. Or if maybe they are being permanently ruined by having to live in a hospital for so long. They have so much attitude sometimes! I have to remind myself that I am raising a typical 4-year-old and a typical 2-year-old and that even if we didn't live in a hospital, and even if I was doing everything perfectly, they would still misbehave and act out sometimes. Or all the time. Tonight Jonah was mad at me for something and all in a huff and he said, "Mommy, you have lost your privileges to read to me from now on. Only Daddy can read to me now." He said this while sitting on the toilet which made it hard to take him seriously. If he wasn't being such a stinker it would have been hilarious. I have had to make an extra effort to be patient with him lately, because he's having a really hard time when he is told 'no'. Parenting is already the hardest thing to do on the planet, but you add our collective stress level to any given discussion and it's pretty amazing that we all four still really like being around each other. So I will cut myself some slack and believe that we are doing SOMETHING right if at least my son knows how to correctly use the word "privileges" and if he believes not being able to read books would be a serious consequence.
Even though this time is hard, I refuse to pity my children. It would be so easy to feel sorry for them, for having to be here, and let them get away with more than usual. But that's not going to do them any favors. God, give me extra patience and understanding for them, and the strength to discipline and teach them, even here.
Even with the extra energy we've needed to parent lately, things have been good the last week or so. Caleb had a rough couple of days last week, throwing up a lot and just looking puny, but he has been much better the last few days. That boy has a healthy dose of willfulness, I swear. We have prayed for him to be a fighter since before he was born, and we see that in him in both wonderful ways and challenging ways. (Caleb quote of the day: "I. Play. Ipad. NNNOOOWWW!) When it comes to his health, I'm so thankful for it. He will have a bad day or two and always bounce back. Today was a very good day, and he even ate half an orange. 21 bites! God has so obviously watched over him, because for a kid with a heart as sick as Caleb's, he has really done so well for the last six months. He has rough patches and then he always turns around. There is a lot to be thankful for.
I actually have a specific prayer request for this week. Caleb will be having some blood drawn to check his antibody levels. To refresh your memory, Caleb has some specific antibodies in his blood that most people don't have, due to the fact that he has had blood transfusions in the past. There are SIX specific antibodies the transplant team has to check everyone for, because any person who receives a transplant not only has to match a heart by size and blood type, but also by these antibodies. When Caleb was first listed, he tested positive for THREE of these antibodies, which the transplant team is almost certain is the reason it has taken so long for him to get a heart. It has made it difficult to find a suitable match for him.
To our huge surprise, a few weeks ago they did a routine lab to re-check these antibodies, and one of them was completely gone and the other two were significantly decreased. We were never aware this could even happen! The doctors said there's no real explanation for it but that it definitely helps Caleb's chances of finding a match. This week is the next routine lab, and I am so anxious for some good news, to hear that maybe one or both of the remaining antibodies are gone. Would you pray for this specific issue? Would you pray with us that when they draw this lab, they find NO antibodies and that the team can change Caleb's status to be able to receive a wider range of donor hearts? This would be a huge deal and we are really hoping for some great news. The test should be on Thursday.
Thank you for sticking with us. It amazes me that so many people continue to follow our story and care about Caleb. Thanks for having faith when ours gets weak. We are so encouraged to know that so many people are in our corner!