This afternoon Tommy and I were baking cookies when the phone rang. It was our hematologist calling to give us the results from Nic's most recent blood work. After he asked three times if everything was fine with our family/home, I knew the news wasn't going to be good. Nic's fetal hemoglobin levels have fallen enough for us to know that he will not get to keep his fetal blood cells for the rest of his life as we had hoped. They are still affording him some protection, which explains his health, growth, and lack of symptoms thus far. That said, if they continue to fall at the same rate that they have been, he will begin to experience symptoms of sickle cell disease and failing health, although for now he should have some protection from the fetal hemoglobin he has left.
After I hung up the phone, I scooped up Nic and sat and cried. I cried for the pain he will experience in the coming years. For the physical deterioration he will face. For the weeks he will spend in the hospital being poked and prodded and having transfusions. For the "normal" activities he will not be able to pursue, for the sports he may love, but not be able to play. For the all of the missing out he will do because of sickness and exhaustion. For the funeral I will probably attend. For the grandchildren he may have, but will never see. And then I stopped, because my crying confused Tommy to the extent that he started crying too, and I realized it was time to stop mourning for the time being and tend to my boys.
We returned to our cookie dough. As we finished the mixing, Tommy spontaneously began singing: "When peace like a river attendeth my way, when sorrows like sea billows roll, whatever my lot thou hast taught me to say, it is well, it is well with my soul." So we sang together as we cleaned up, even though I had to pause a few times to prevent myself from choking up again. I thank God for the reminder that it is well with my soul.
Perhaps it was fitting to receive the call today, on Ash Wednesday. Today Christians meditate on our mortality, on the fleeting moments of our time here on earth, and on the temporary nature of our current bodies. From dust we came, and to dust we shall return. As imperfect as Nic's body may be, in the end, he and I, and even the most perfect human specimen are the same. We came from dust, we will become dust once again. Praise God, that he continues his work even after our deaths, and we place our hope in His transformation of our earthly tents into heavenly dwellings through the sacrifice of Christ. Dust and ashes will not be the end of our story.
While I wish that Nic's final diagnosis would have been different, I am glad to have clarity after months of waiting. I feel more free knowing than not knowing, although I miss the hope that maybe, just maybe, Nic wouldn't be sick. I don't think it is a coincidence that I have been reading 2 Corinthians this week, or that this passage in particular stuck out to me:
"But we have this treasure in clay jars, so that it may be made clear that this extraordinary power belongs to God and does not come from us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair, persecuted, but not forsaken, struck down, but not destroyed; always carrying in the body the death of Jesus, so that the life of Jesus may also be made visible in our bodies." (2 Corinthians 4: 7-10)
Nic's clay is more fragile than most. It won't last as long. It will certainly be cracked, and painful, and difficult, but may the fissures in his jar allow the glory of God to shine through more brightly.