19 Months

Since my last update on Liams 1st birthday, his health went downhill. April was a big month for us. Beginning in April we were in and out of Helen DeVos Childrens Hospital trying to help Liam’s complex needs. Liam became a big brother on April 30th! I’ll have pictures below of how proud and happy he is whenever he holds his baby brother. We had our first PICU stay soon after. Our hearts felt grateful that it was our first overnight hospital stay since getting discharged from NICU last June, but broken about being separated as a family. Liam started getting better around July. We still could not find definitive answers about where his pain was stemming from. We worked with many specialties only to keep hitting dead ends. Labs, scans, tests, anything and everything. Mid July Liam had a tethered cord spinal release surgery. He did fantastic through it all. Of course, he gave one of the nurses a scare after extubation, but he couldn’t leave PICU without a little bit of a scene 😉 Liam has a special impact on those he encounters. He is so loved wherever he goes, and everyone is in awe of his valiant, strong spirit (his name suits him well). From our perspective, the people we have encountered during this journey with our sweet boy is very special. Sweet moments that I call “kisses from the Lord”. God is working and moving, even when it feels dark, isolating, and not how we expected.

The past few months have been very difficult. I have tried to normalize our life the past 19 months. I try to find acceptance in this valley. I have come to find I will never accept this. How could you? These moments of resuscitating in public places, in front of my kids, pulling over on the side of the road urgently to check his breathing…no, this is not normal. I have grieved and I will continue to grieve. I feel the tangled ball of grief- sadness, shock, anger, loneliness. I now understand David in the Psalms like never before. He cries out to the Lord, but ends in “But God”, clinging to who He is and His Promises. I find myself celebrating seasons with Liam, but terrified it may be the last. When summer came to an end I mourned. I sat and wondered if we’ll be granted another summer with him. However, I have memories I will forever cherish. In these moments of fear and worry, the hope of Heaven calms me to a quiet peace.

For many months everything felt defeating. The dead ends, the appointments, the hospital stays, the scares. The past few weeks we’ve been back on a similar road we journeyed in April. I was encouraged by someone really dear to me to gaze into the face of Christ. His hands do mighty work, but we can’t only focus on His hands. When things feel silent and physical things aren’t changing, we tend to question, “why aren’t His hands doing anything? Why aren’t these things being fixed?” His face. Yes, His face is where I will rest. Because that is enough.

I will allow Him to keep breaking me, believing and trusting He transforms brokenness into beauty. I will forever be changed by my precious Liam. We will continue to smother our boy with kisses and hugs. Being loved is what Liam loves, and dearly loved he is.