I never know how to begin to tell my family’s story. Where do I even start? I could just say, my kid had cancer and that sucked. Or maybe start by just telling you about me, like I have 3 beautiful kids, or that I’m a working mom. I could even start with the disclaimer saying my kid is healthy now, but wasn’t for a long time… all those statements are true, but I can’t start there.
After much debate with myself, I think the best place to start is to introduce the centerpiece of the tale and expand from there. My God, my Jesus, my Savior, my King. He is faithful and He is in control. Boom! Mic drop. Ok, that is the main point, so if you’re a skim-reader you can probably just end there. If you want the juicy deets, read on my friend. This cornerstone of life, that God is faithful and in control, I unfortunately didn’t always know. Or to be more accurate, I knew it in my head, but didn’t trust it in my core.
“And now, for the rest of the story…” (For those of you old school believers, yes that’s intended to be read in Paul Harvey’s voice☺) I don’t do vulnerable, I don’t like to go too deep, and I don’t get mushy in public, so just for fun… I am going to do all three! <insert deep breathe here> My cozy family was rocked and foundations threatened to crumble in one day, one phone call, one Dr. visit. My youngest child, Declan was 2 years old- almost three, when he was diagnosed with Leukemia; the big C- cancer. As a family we had just started recovering from 3 losses to cancer just a little over 1 year before. My grandmother lost her battle with Lymphoma June that year. Then my father and my husband’s grandmother were diagnosed with cancer within weeks of each other. They went to Jesus just 6 short weeks later in August (days apart) that same year. So that summer royally sucked. My dad was my hero, and this big C took him in a snap. I learned two major things, cancer kills, and the art of a “broken hallelujah”. This is when you cry to Him because everything is broken inside and all you can do is whisper “hallelujah” through the sobs. I worshiped Him because I was trying to convince myself that God still deserved the praise when I was so devastated. That’s where I was, but life wasn’t done yet. My shattered pieces would be broken smaller before God could make my heart His mosaic.
Declan, my son, is pure joy. Before he was born, when I would pray for the little life I was carrying, God kept giving me one word or theme for who this little boy would be- joy. That’s him in a nutshell, he is funny, mischievous, and too cute- and he knows it. He was a bonus baby not entirely planned. We were good with two kids, started to make plans to permanently stop at two kids. That’s when I think God laughed at us and said, “No, you need chaos.” And so it was.
It all started with a Christmas Eve ER visit. High fevers and lethargic behavior. Once his fever dropped with medication, they sent us home. After that my baby boy was constantly sick with a cold, bronchitis, ear infections, high fevers, and other childhood illnesses. We went to the pediatrician often to treat him, but he never seemed to bounce back to the happy high energy two year old we knew. As spring started to poke its head up, Declan did not. He was getting paler and more lethargic as time passed. Of course this is all in hindsight; at the time the changes progressed slowly enough not to alarm us too much.
One sunny day in May, we went to the park with my extended family. All the cousins were running around playing and enjoying one of the first days of summer-like sunshine after the long Michigan winter. All the cousins… except Declan. Surrounded by the chaos that is family- he slept in my mother’s lap, no amount of encouragement or bribery could get him to get up and play with the other kids. “My ears hurt”, he said. So we just planned on going to the pediatrician in the morning. The next day changed our lives, my heart, and who I understood God to be.
I was working full time doing corporate training, so my husband was on Declan duty (side note… my husband’s testimony of these next few months is powerful!). He brought Declan into the pediatrician’s office. Since our regular doctor was full for the day, we saw another doctor in the practice. She noticed how pale Declan was and ordered blood work done, no big deal, just wanted to check his levels. Sometime later, I’m about to start a class and my phone rings. The Doctor's office wanted me to know that we should bring my son to Helen DeVos Children’s Hospital and the ER was expecting us… what?! He has an ear infection… Like what the what?! I tell them my husband is the one with Declan and to call his phone. Then I took a deep breath, and had to teach my class.
As soon as the last employee filed out of our training room, I called my husband. And right there folks, in that moment there was a shift in my universe. Mom panic (which is a whole lot crazier than regular panic, amiright?) set in full blast. I ask my husband “what‘s going on?!” And his answer is (because he’s in full blown “protect my son” dad mode) and I quote… “They said he has Leukemia, we’re on our way to the hospital, I gotta go”- aaaaand click. That my friends, was the phone call that rocked my foundation and plunged me into the darkness.
*Warning* My story gets a little emotional here. I immediately ran to my bosses office and shut her door. Through blubbering tears I tried to squeak out a coherent phrase. I got as far as “they think Declan…” stuttering breath, “Leukemia.” more sobs. I will be forever grateful that my boss at the time was also my friend (remember I don’t do vulnerable… so this was way out of character for me). She hugged me and looked me in the eye, told me she’d be praying and to do what I needed to do. Five minutes later, still in a panic I speed my way from work to HDCH. I don’t remember much about the drive- it’s a miracle I didn’t run anybody over or slam into another car. I could barely see through the tears streaming down my face as I white knuckled the steering wheel and screamed. I screamed at God, I begged him out loud, “God please don’t make me bury my child. You can’t take him too. It’s too much God, I can’t do this!!”- over and over.
When I get to the hospital, I meet my husband with Declan, and they rush us to a room in the ER. It turns out that when they did the blood draw that morning his Hemoglobin level was at a 4. To give some perspective: normal levels range from 12-16… and on the other side, 2 is cardiac arrest. It’s a very big indicator of Leukemia. They poked and prodded him, did blood draws and x-rays, while he screamed and cried and my heart broke. They quickly admitted him to the Hematology/Oncology floor.
A few things really stood out to me in this point in the story, little things that were big blessings. Not only had my mother-in-law immediately stepped up by caring for my other two little ones (Will-5 years old and Hanora-4 years old) but also, my brother-in-law, who works at the hospital, got wind of the situation through the family grapevine and was by our side in minutes. Next my uncle who worked in the ER in a supervisory role, saw Declan’s name come across and immediately came to comfort and help us. Next I called my mom and she answered (small miracle because she never answers her phone) and she came too. God knew we needed our people, and provided. Our immediate family streamed in and lifted us up.
I can’t begin to explain all that happened over the rest of the day, or the medical outlook at this point, but I can tell you that we knew his diagnosis that night. We spoke with the Oncologist and he confirmed that Declan had Acute Lymphoblastic Leukemia and that treatment was needed immediately (FYI- best care team ever- we were floored by the amazing staff of Doctors and Nurses at HDVCH). They started a blood transfusion, and we started praying. Not knowing how to sort my mess of emotions, I got angry, like really angry- at God. I raged internally at my creator, my son’s creator, the maker of the universe and I slowly started to lose control. As I already said, I don’t do vulnerable. I have a mask I wear, I guard my heart with humor, and no one is allowed to see messy me. Messy me was in that hospital room longing to hold my baby but not being able to with all the tubes and IV lines in the way. Messy me barely acknowledged as our family trickled in and out. Messy me broke all over again when I realized we had to tell my other two children what was going on. Messy me woodenly said goodbye to my husband as he went home to care for our 4 year old and 5 year old. I kissed Declan good night and curled up on the couch/bed in his hospital room.
The first night was torture. Every time the Nurse came in to check on Declan he cried. I sobbed when trying to comfort him, “Buddy they are just checking on you, they aren’t going to hurt you buddy, it’s okay…” and the pieces of my heart shattered smaller.
This is one of darkest moments of my life. I had lost the ability to remain calm, my heart was breaking over and over again hour by hour, and I was furious that God would allow my little boy to be sick. Friends, new friends, anyone out there hurting… If you find your heart in the dark angry place, with no light to show you the way, call on Him- He is Faithful. In my darkness, my heart cried out to God and His presence filled the room and peace descended on both Declan and I. He spoke to my heart and reminded me of who He is and how much He loves my son. In wonder of the Holy ground, I tiptoed out to the family quiet room with my Bible and my phone- so I could listen to worship music as I had it out with God (to help paint a picture it is now 3:30 am…).
I poured out my heart, my anger, my fear, and my panic at the feet of my Savior. I remained flat on my face sobbing until I had nothing left in me. Here is something to remember- God can take it. He isn’t afraid of your anger; He isn’t going to punish you for hurting. When I was drained, he began to fill me up. I opened my bible to Psalm 30. (For the sake of time and space, I’m not including the whole chapter… read it if you get a chance!)
2 Lord my God, I called to you for help, and you healed me. 3 You, Lord, brought me up from the realm of the dead; you spared me from going down to the pit.
He reminded me that He is the ultimate Healer. That He alone could bring my child up from this sickness. Also that He is in Control.
11 You turned my wailing into dancing; you removed my sackcloth and clothed me with joy, 12 that my heart may sing your praises and not be silent. Lord my God, I will praise you forever.
He comforted me with HIS joy in the midst of my pain; therefore I would praise His name.
The road to recovery was long and bumpy for Declan, but from that moment on it became an adventure in experiencing God’s daily grace and His joy. Declan responded to treatment like a champ, laughing and bouncing again. There were a lot of hard times, a lot of struggles- like a lot. I could probably make this a 50 part series to cover all the ups and downs of a toddler on Chemo… for example, let me just stop and acknowledge the crazy chaos that is a three year old on steroids… Holy Toledo, literally the most frustrating thing ever! Through all of that God has been faithful to fulfill the promises He made through his word that night.
Today Declan is in full remission, and has a clean bill of health. He turned 8 this past July and is full of spit and vinegar, and of course… Joy. I still have to be reminded of God’s faithfulness sometimes, but He never has to be reminded of me. He continues to make my heart His mosaic using all of the pieces I thought were broken beyond repair, because He is faithful.