Monday marked one year since Philip started bleeding rectally. He was four.
Anniversaries are a funny thing. On the one hand, you are thankful for how far you’ve come. On the other hand, those anniversaries bring back to mind those dark days, and it’s almost like you can taste the worry and anxiety that you once felt.
When Philip started bleeding we were very concerned. Perhaps we would not have been so concerned had not just two weeks prior (the first week of December), I was diagnosed with ulcerative colitis. A week and a half before my colonoscopy, I woke up and saw blood when I went to the bathroom. Following my colonoscopy, I remember groggily getting into the car with the help of a nurse and looking at Osvaldo as soon as the door closed. I could tell then he was sad. He told me I had ulcerative colitis, and I cried. Receiving a diagnosis, even if it isn’t cancer, makes you feel vulnerable, fragile, and aware of your mortality.
But it wasn’t just my recent diagnosis that made us worry that December Monday. Osvaldo had been suffering from ulcerative colitis for 12 years! What was so strange was that our gastro doctor said our colitis was identical—in the same spots of our colon. I didn’t know whether I should be angry with God that we both had an identical disease or laugh because what are the odds! I told a friend, rather sarcastically, we should just be called, The Colitis Family.
When Philip began bleeding, we were concerned but it was difficult for us to believe that it was related to colitis at first. It would be too coincidental that he would start showing symptoms for colitis three weeks after I did.
That week was not only the longest week of our lives to that point but it ushered us into a very dark time. I’m crying even now remembering.
Four days before my bleeding began, I gave two talks on Matthew 6:25-34 at my church for its Fall Coffee event. In this passage Jesus addresses anxiety. “Therefore, I tell you, do not be anxious about your life … Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they?” I told the women who had gathered for coffee that Thursday morning that circumstances change in our lives but our faith is in One who doesn’t change and who loves us. God is a good Father who loves us even when our circumstances might try to tell us otherwise. It’s interesting that the appeal to not be anxious comes after the Lord’s Prayer. I argued that it is within the context of prayer that we are able to be strengthened when worry and anxiety overcome us. “For your Father knows what you need before you ask him” (Mt. 6:8). Little did I know how much I would need this sermon, this reminder that God is good and He loves us no matter what our circumstances would have us believe.
A year ago Monday began a long journey and one we are still on. That week in December took us down a dark internal journey as well. As parents you love your child more than anything in this world, and when something abnormal begins to happen it triggers the fear of every parent—that of losing their child. Coupled with that fear is the fear of your child suffering, of your child not developing, of your child being left behind, etc.
This Sunday we will mark one year when we took him to the ER because the bleeding had increased. Next week will mark one year that Osvaldo and I were convinced that Philip had colitis and when we finally got Philip an appointment with Children’s of Alabama Pediatric Gastroenterologists for early January. This Christmas Eve and Christmas will mark a year when, as we were in Texas, Osvaldo and I were so troubled in spirit that it cast a shadow over the holiday. We hardly could put forward a smile or sing happily along with carols without crying. We were tense as we both dealt with worry and sorrow differently. We remember those nights in Texas as Philip lay asleep looking at him with worry about what lay ahead.
“My tears have been my food day and night, while they say to me all the day long, ‘Where is your God?’ … Why are you cast down, O my soul, and why are you in turmoil within me?” (Ps. 42: 3, 5a)
A dear friend put it so well: “I was afraid of not knowing and I was afraid of knowing.”
We lived for more than two months of not knowing. I will never forget the first doctor’s appointment with Philip’s gastro doctor. Philip knew something was wrong with his body. As he sat on the paper-covered office table waiting to be seen, his face became worried and his lips began quivering. He was scared. I held him, and he cried. We all cried; we were all scared.
It would take an hour and a half for his colonoscopy to finish in late February. When the doctor came in to see us, he broke the news that Philip had colitis. But given the location of his colitis, they felt like it was behaving more like Crohn’s Colitis. Prior to the exam, we had come to terms with a colitis diagnosis but worried about Crohn’s. Colitis is much easier to deal with than Crohn’s. Colitis only affects the colon; Crohn’s affects the throat all the way down to the rectum. When we heard the word Crohn’s, we were crushed. Osvaldo and I held each other and for the first time sobbed deeply. Relieved to finally have a diagnosis, we also broke down under its weight.
Anniversaries are a funny thing. They not only bring up the memories of that one day but they set into motion remembering what follows that day. Perhaps because Monday’s anniversary marked a new way of living for our family: giving Philip medicines three times a day, hospital stays for complications, change in diet, pain management, etc. Monday’s anniversary reminds us that Philip has an incurable disease.
But we have a lot to be thankful for. Monday, on his one year anniversary, Philip is not showing any signs of blood. He’s gaining weight; he’s growing. He’s happy, and doing well in school. He’s alive. There are many medicines on the horizon for Crohn’s and colitis and much research is being done. Who knows? Perhaps one day his disease will be curable! We also recognize there are many parents whose children receive a diagnosis that ends in death. We remember that many parents will be celebrating Christmas this year without their child. Osvaldo and I pray for these parents often.
It’s been a difficult year, but what I said on Nov. 13 is still true, even–or perhaps especially so–after our diagnoses. Even while we walked through the valley of the shadow of death, God was with us. His presence sustained us. His Word was our food. The psalmist responds to his own question, Why are you cast down, O my soul, not with a because. Like me, perhaps the psalmist knew exactly why he was cast down. But he answers with what will lead his soul out of the place of deep sorrow. “Hope in God; for I shall again praise him, my salvation and my God.” Hope in God. That’s all we could do. All we could mutter to God in prayer was “Have mercy.” But it’s not what we were able to do this past year but what God did. He sustained us. He held onto us. He enabled us to hope. He enabled our feeble prayers. He did not let anyone snatch us out of his hand (John 10:28). And He was with us and will continue to be with us on this journey. Thanks be to God.