Tuesday, 7 February 2012

Blessings From a Curse

The nurse called with the preliminary results of Nic's blood work. We are still waiting to hear about the percentage of sickle cells in his blood vs. fetal hemoglobin (which is what we are most anxious to hear about, of course), but the good news is that he is not currently anemic. This means that no matter what the results of his test, whether they decided that he does has sickle cell disease (current diagnosis), or if they decide to re-diagnose his condition as sickle/HPFH, we won't need to make any immediate decisions regarding his health or course of treatment. We are thankful for this breathing room.

I've been reflecting on what I've learned in the past nine and a half months of waiting for this diagnosis. I can't believe that Nic has been home for almost a year, and I can't believe we have spent this long waiting for answers, especially when sickle cell is usually such a clear diagnosis. The wait has had its ups and downs. Accepting that the perfectly healthy-looking child we brought home had a serious disease was tough, but the most difficult period was when we (and the doctor) really believed they were going to un-diagnose him, and then they didn't. When we got the good news, I felt like Nic had been given his life back, and having that all taken away again was so hard.

I know that even with sickle cell Nic's prognosis is "good," or at least they expect it to be. But "good" for his type of sickle cell means maybe living 50 years, instead of 40. It means heading to the hospital only a few times per year, instead of every other month. I am grateful for that. But, the truth is I want him to live to be 80, not fifty. I don't want him going to the hospital at all. I don't want him to be in pain, or feel different from other kids (I have a feeling that my kids are going to feel different enough without added medical conditions), or to be unable to participate in normal activities. Most of all, I want him to live a full life, and I worry that sickle cell will hinder that. Unless, of course, I alter my definition of "full."

Here is my hope, my redefinition of "full": even if Nicolas' diagnosis is confirmed and not reversed, I believe that God can use this disease for His glory in Nic's life. I pray that Nic will see the beauty that God can weave from the pain that he will surely suffer and the sacrifices that he will surely make. For my part, I can already see some of what God is doing through the pain of Nic's diagnosis in the life of our family.

For starters, when we were having our homestudy done for Nic's adoption, one of the major questions was what special needs we would be open to. We included correctable special needs in our "open to" list, and we discussed certain physical special needs (most specifically HIV), but in the end we decided against it because we were unsure if we could handle the daily medicine regime, the increased doctor and specialist appointments, the hospital visits, and the stigma. While sickle cell is pretty much stigma-free, we have ended up doing every single other thing on that list, and have realized that we do have the resources to handle it. If we decide to adopt another child with physical special needs on the next go round, I believe it will be due largely to the experience that we have had with Nic, and the confidence that this has given us to take on that responsibility. What a gift that has been to us, and to our future family.

In a similar vein, Nic's diagnosis has forced me to further give up my (imagined) control of my kids' futures, or at least grip those futures a little less tightly than I had been (you may notice that God is continually working on my control issues). Accepting that Nic's life is probably not going to look "perfect" or how I might image it under the best of circumstances (and doing the same for Tommy) has been freeing. God worked it perfectly that the book my bible study did last fall emphasized similar themes about placing our children in God's hands. My responsibility is to raise a child who loves God and wants to conform their life to His will, and sickle cell does not stand in the way of that.

It has also been very eye-opening to learn about sickle cell disease. I knew a bit about it before...as in, what I remembered from biology class in high school. I never realized how serious of a diagnosis it was, or (sadly and unfairly) how little money has gone into research for alleviating symptoms and finding a cure because it is a disease that primarily affects people who aren't rich and who don't have special interest groups, loads of wealthy friends to hit up for donations, or time to spend rallying people to wear special bracelets and buy colored products. I am thankful that I am no longer as ignorant as I used to be.

This next blessing is a little more speculative, because something else may have prompted this if it weren't for the sickle cell, but I don't know if we would have Klug boy #3 without it. The thing that scared me most about getting pregnant again was the thought of having to wait months and months to learn whether or not the baby would be healthy. Then, I spent months and months waiting to find out if Nic would be healthy or not, and realized that it was possible to function under that stress. When we found out in July that we would be waiting ages to learn about Nic...well, I figured if you are going to wait to find out the fate of one child,you might as well wait on the fate of the second at the same time. And voila, enter baby Klug.

Blessing upon blessing upon blessing.

Tomorrow we go in and will hopefully be getting the results of Nic's blood work and a firm diagnosis. Please pray that we will be able to graciously accept whatever God is doing with Nic's life, whether it means that he will live with sickle cell disease or not. And pray that no matter the result, that we remember to cling to the blessings that this period of waiting and uncertainty has brought us. And yes, I'm deliberately posting this tonight, before we find out, so that I have a reminder in case I am feeling much less thankful tomorrow.


Haley said...

Amy, I am careful with how I use this word but it is worth using here: this was truly inspirational! I praise God with you for all he is doing in your family!

Katie said...

I have had that sweet boy on my mind all week. Hoping for good news tomorrow.

Megan said...

What a graceful perspective. Praying for you guys!