Hope in the Lord: Philip's 1 year anniversary with Crohn's Colitis

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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.

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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.

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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.

O Death, Where is Your Victory?

March 2nd my grandmother, affectionately known as Nana Sue, died. That word "died" has a kind of brashness and finality to it, doesn't it? In fact, I didn't want to use that word at first when Nana died. I used "passed away" or "went to be with the Lord" in its place. Those are fine and true phrases to use for a believer, I just didn't want to use a word that assured me of the reality that Nana was no longer here with me.

But the real reason I didn't want to use the word "died" with Nana's name was because I wanted to avoid thinking about the issue of death. Even for me, a long-time believer, death all the sudden seemed scary and mysterious. It brought to the surface insecurities and doubt that I didn't know existed. When Nana died it was as if for the first time I stood at a crossroads of my faith. I could either continue down the path of believing God's Word is true and that those who believe in Jesus live forever with him OR I could go down a new path of cynicism and pessimism refusing to believe and hope in the unseen but only believing in what I could see -- that death was the end.

I remember praying, "God, I believe. Help my unbelief!" And for the first time, so it seemed, I understood what Paul meant by, "Now hope that is seen is not hope. For who hopes for what he sees?" (Rom. 8:24)

Yesterday I listened to a podcast of Tim Keller, pastor of Redeemer Presbyterian Church in New York, preaching about the Crucifixion from Matthew 27:46. In this verse, Jesus quotes from Psalm 22:1 crying out that God has forsaken him. Because Jesus took our sin, the death he died was one of judgment and punishment by God. Our sin had to be judged, punished. And in that moment, God forsook him.

Why does this truth bring me hope and peace when thinking about Nana's death and even my own? Hours before Nana died I went in to speak to her while she was lying in bed unconscious and on life support. One of the things I did was quote Scripture. I honestly cannot recall what Scripture I quoted her except for one, Hebrews 13:5b, "I will never leave you nor forsake you."

It dawned on me while I was listening to Keller's sermon that the reason I could confidently say that truth to Nana and believe it for her was because Christ was already forsaken by God in her place in order that God might never forsake her. Did you catch that? Jesus was forsaken by God on the cross in our place for our sin so that in him we might never be forsaken but rather welcomed as children of God! I know that Nana was not forsaken by God at death and neither will I by the grace of God through faith.

But so many are and will be. Those who refuse to accept Christ's gift of him taking their place before God will have to endure it for themselves -- the judgment, punishment, death, and probably the worse thing -- forsakenness. What about you? Will you believe and accept Christ's gift?

Those of us who are in Christ can confidently proclaim Romans 8:31-37 now and for when they die:

"What then shall we say to these things? If God is for us, who can be against us? He who did not spare his own Son but gave him up for us all, how will he not also with him graciously give us all things? Who shall bring any charge against God's elect? It is God who justifies. Who is to condemn? Christ Jesus is the one who died -- more than that, who was raised -- who is at the right hand of God, who indeed is interceding for us. Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or danger, or sword? As it is written, 'For your sake we are being killed all the day long; we are regarded as sheep to be slaughtered.' No, in all these things we are more than conquerors through him who loved us. For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord."

 

Nana's Tribute

Last Saturday, March 2, my beloved Nana Sue (grandmother) went to be Jesus. The Thursday and Friday leading up to her death and the days following were probably the most difficult I have had to go through to-date. Nana was active in my life, sending me texts and e-mails, calling and praying for me. My grandfather asked me to speak at her Celebration of Life service last Tuesday on behalf of the grandkids. It was my privilege to honor her in that way even though it was very difficult to get through. Below is the tribute I gave. Thank you to those who have prayed for me and my family during this difficult time. The only thing that got me through this was prayer and my belief in that God is good and is on His throne. If Nana were here today she’d tell me, “Kristen, keep it short.” But Nana needen’t worry since Don Guthrie has already told me I have only three minutes and would be timing me.

It’s a privilege to stand here today on behalf of myself, my sister, cousins and our spouses to speak to you today about the person we knew as Nana. Immediately after Nana died I thought how my son Philip, my sister’s son Nathan, my cousin Ricky’s son Reed due the first of May, and all our other yet-to-be-born children will not have memories of our Nana. So the questions that come to us grandchildren are, “What will Nana be remembered for? What will we tell our children about her? What will be her legacy?”

First, I think we will remember how Nana never missed an opportunity to preach us a sermon. You never had to guess what Nana was thinking because she always would let us know. Her directness and bluntness were charmingly annoying but more often than not what she said was true. She told Ben before going to Cleveland that if she didn’t come back alive that he could be sad for one week but then after that he couldn’t be sad or she’d come back to haunt him. Sounds like something she’d say!

We will tell our children how our Nana loved playing games with us everything from UNO to Yahtzee to 42. If she lost, Nana would say, “Kiss. A. Pig.” But if she won, she’d shake her fists in the air and just smile. We’ll tell them how she loved to laugh at us and us at her. She’d get so tickled watching the boys make fun of the way she walked or by the quick witted comments made by Kim or Ben. She would tell us all the time, “All you want to do is laugh at me,” but she’d say it while laughing so that we knew she enjoyed it.

I think we’ll remember her sitting at the piano playing one tune after another from memory filling the house with a beautiful melody. This personally was one of my favorite things.

We’ll remember those blooper moments like Nana paying for my sister’s and mine Happy Meals at the McDonalds’ drive thru then driving away without our meals. Or that time when she bragged to Alex about how good her chocolate pudding was, but when she finally made it for him she had used lemon extract instead of vanilla extract. It tasted terrible of course and had to be thrown away immediately.

We’ll also remember to tell our children how much she loved Papa even though she fussed at him all the time. We’ll tell them how she dropped everything to go help Ben when he called her saying he was lost in downtown San Antonio. How she spent hours helping Ricky apply for college or how she stayed with Ricky at the hospital when he had brain studies. Or how she came to the hospital when Kim gave birth to Nathan and wouldn’t leave but stayed all night those first hours of Nathan’s life that he was so sick. How she came to our graduations and weddings; how she never forgot our birthdays; how she’d always send me texts when she saw storms were coming to Birmingham to tell me to be safe; and how she was always praying for us. Our children will know that she loved her grandchildren, and when Philip and Nathan came along she loved them just as much. In fact, I spoke to her the night before she went into cardiac arrest. She didn’t want to talk about herself; she wanted me to tell her stories about Philip, and that’s what I did. 

But these memories won’t be her legacy. No. Her legacy will be that their great-grandmother, our grandmother, loved the Lord Jesus Christ above us all and served Him faithfully. She showed us by example and by word what it meant to be a follower of Christ, to be obedient, to be a lover of Scripture and to be faithful to the local church. She demonstrated what it meant to suffer with grace. We never heard her curse God or be angry with Him for her suffering. Instead, she’d say, I’ll serve Him as much as I am able and if the Lord restores my health I’ve told Him I’d continue to serve Him.

In fact, if Nana were here today I don’t think she’d tell me to keep it short. Rather I think she’d say, “Kristen, don’t talk about me; talk about Jesus. For I’ve seen Him and have beheld His glory and beauty and nothing that the world has to offer compares to this!” So that’s what we’ll tell Philip, Nathan, Reed and any others to come that Nana’s life pointed to Jesus, and if you want to see Nana just look at Him.