6 Months Old

This is Mackenzie updating. Our lionhearted Liam is 6 months old today. I have cried many times today at this fact, and it’s only noon! After the diagnosis in January, the desire of my heart was to look Liam in the eyes at birth. Not only did I look into his eyes at birth, but we have created many memories with Liam. Memories that will forever be embedded in my mind and engraved in my heart.

Life with Liam at home has been far from easy. I have never experienced this clash of sorrow and joy before. We mourn how abnormal our life is with our son, but overjoyed he is still with us. It is an honor to get to love on him every day, but it comes with some very hard days. Liam averages 3-8 appointments a week. He has about every specialty Helen DeVos Children’s Hospital offers working alongside him. On Liam’s health chart, he has 18 health conditions all stemming from his Trisomy 13. My Mama’s heart wants to take these conditions from him, but, again, I pry my hands open to the Lord in surrender. Liam’s recently been working closely with Neurology. His seizures have grown in intensity, causing him to turn blue and stop breathing while he’s seizing. This requires us to grab the CPR bag, and resuscitate him, sometimes multiple times a day. Liam had an EEG a few weeks ago at the hospital, and was diagnosed with epilepsy. We felt discouraged, thinking, “add it to the list.” But let me give a huge call out to my son who lives into his name- strong, valiant, determined. And thank you, Lord, for giving him that strength! How do I wake up every morning wondering what the day holds? I rest in the hope I have that Liam will be healed once he meets his Maker in Heaven. Romans 11:36, “For from Him and through Him and for Him are all things.” Nothing exists that doesn’t serve His great plan and purpose for all things.

The things I have learned in 6 months will last a lifetime. I knew once I got the diagnosis I would forever be changed. However, I don’t think I was prepared for how the change would “hurt”. I envision God chiseling away at me, humbling me, softening me, changing me. I am changed for the better, and I will continue to allow the Lord have His way in me. How unique that suffering can do this? I remember hearing a podcast in 2023 by Nancy Guthrie who spoke about losing her two babies many years ago. I remember exactly where I was standing in my home while listening to that podcast (not pregnant with Liam yet), and I remember my thought. “I’m glad that’s not my story. Would I proclaim the name of God stronger than before if that happened to me just like Nancy did?” The answer is, yes. Sometimes not without a fight, I admit. I know the days I’m relying on my own strength, and the days I’m trying to control situations and outcomes. How foolish. It never works. I may be weeping inside, hurting from the chiseling, but deep down I know that God is with me and He is my source of joy. The graciousness of God continues to remind me He goes before me, He is beside me. Psalm 23:6, “Surely goodness and mercy shall follow me all the days of my life.” A new mercy, mercy that will be sufficient for whatever that day holds.

Now, to talk about the utter joy that Liam brings! Once we hear Liam coo from his crib in the morning we all fight over who gets to hold him first. Normally, our Callie Joy wins that fight! The kids make sure his nasal cannula is in place, and his cords are safely out of the way while we play. Liam has gotten (lovingly) tackled, smooched 1,000 times, unlimited belly busters, and snuggled multiple times a day, every day. Our kids have pushed him for walks, read to him, changed his g tube and cannula stickers, bathed him. Liam has tried ice cream, went for a boat ride, slid down a slide with Callie. We have gone on family vacations around Michigan, NICU nurses have come for a visit for snuggles. It is unique to be told your sons life is limited. But, all of our days are numbered. We have freely lived this summer, enjoying every moment we have been given with little Liam. We have pushed ourselves to be comfortable with the uncomfortable. We give ourselves no excuses to be held in bondage to our home, or to live in fear for Liam’s life. We thank God for this freedom and for scraping the scales from our eyes to maintain perspective of what really matters. Things that used to feel like big things are now little things.

In this valley, we have sorrow. We mourn. We weep. But, there’s joy. The only explanation of that is from the Lord. I am reading a book called The Call to Joy and Pain. The author writes, “Salvation is such an overwhelming wonderful blessing that whatever we go through, we always have a reason to rejoice.” Amen!

Enjoy the video of our home life captured since discharge in June. Being loved is what Liam loves, and dearly loved he is!

2 Corinthians 4:8-10, “We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.”