Our Jackson was born a beautiful and healthy baby boy. Full term, no complications. So as new parents of a perfectly healthy baby, when we started to notice unusual behaviors 5 months later, we naturally assumed this must be a result of simple childhood illnesses. Irritability and discomfort came at the expense of mundane everyday diseases, and we trudged on believing he’d come out of it as soon as he acclimated to living in this harsh world. This too is just a step in the journey of life, of growing up, and even for myself and my husband, a step in parenting.
I was completely derailed at his 6 month check up when I was told my perfectly ordinary little boy was potentially seriously ill. Heart sinking, stomach turning, I tried to grapple with what I was hearing.
“This is an indication of something very serious, but I don’t want to speculate. We need to get brain imaging.”
“You need to contact a specialist right away.”
Days later after extensive testing and not being able to eat or sleep, a diagnosis: Krabbe Leukodystrophy. “Terminal by 2 years of age. There is no treatment, just supportive care.”
Just like that our lives shattered.
Terror, powerlessness, dread, confusion, and isolation. The enemy had more than a foothold. I was in the midst of personal despair as all the plans I had for Jackson came crashing down around me. All the things I had dreamt of for this precious little boy were being threatened. Spiraling, I began to play all the firsts in my head that I’d never get to witness: first words, first steps, first time he would call me Mama, first day of school, first ball game, first love…and on and on.
Confused and angry at God, I demanded “Why?! He’s brand new. He’s done nothing wrong. It’s not like this is the consequence of a bad decision he’s made. He’s literally done NOTHING wrong.”With an almost audible voice, God so lovingly and graciously answered my desperate cries, “Jenna, those are good and right things for you to want for your son, but they are ordinary things. And what I have planned for Jackson’s life is extraordinary.”
It was then in that profound moment that my mind began to shift focus. I was no longer focusing on all the things I was going to miss out on because Jackson was terminal, but rather all the things I was going to miss out on if I didn’t set my sights on the One who created him. God had a different plan for Jackson than mine. It was clear that my vision of his life was small and ordinary in comparison to what the Creator had planned it to be. God was going to use my beautifully broken boy to do MIGHTY things. It would be scandalous because God would use a boy who would never speak a word to grow His kingdom, and bring others to Christ through his story.
God was doing the very thing He had done throughout history. He was exercising His strength through the humble and seemingly weak.
And the truth is that the darkest parts of our journey have shaped us and prepared us for what has come. The pain has not been in vain because God does not waste our sorrow—He uses it. God made our story, so we can sit with others and lean into their darkest moments, and it’s a true gift to get to show up for others in those moments.
Because of Jackson being born with Krabbe, God called us into start-ing a foundation. This has allowed our family to love on and care for a rare community of people who need to know and hear of God’s goodness amidst tragedy. He continues to ask us to be His hands and feet, bringing glory to His name by making this disease known to our local community, and by supporting a community of individuals who are real life heroes. When this all started, God was moving and reconciling broken things before our very eyes, and he was asking us to come along and be a part of His team.
God’s very movements in our journey remind me that the story is never over. You might believe it is when the pain feels like it’s going to swallow you up, but it isn’t over. God is always working even when we can’t see or feel it. And you may argue and wrestle with God, maybe even in a disrespectful way as I did, but He’s going to show up because He has promised His presence through it all.
But not only did He give us purpose in this tragedy, He never abandoned us. He grew our joy, loved us, comforted us and carried us through one of the most beautiful and difficult seasons of life that we were to ever experience.
God tenderly held us close by giving us so many sweet graces during Jackson’s life. We met dear friends with similar stories who have guided and loved us through all parts of the journey.
We truly experienced life with our boy, drinking in every moment, and appreciating every breath he took. We gained perspective and strength from Jackson’s quiet strength and stillness. We learned and we loved deeper than ever before.
God gave us 3 years with our extraordinary boy, and we are better for having been called to be his parents. He will always be Our Jackson, the boy who truly lived.
~ Jenna Wallace
Mother of Jackson Wallace (4/18/13-7/4/16)
Read the Wallace Family Story here.
Please continue to give me faith to believe in You, even in uncertain times.
Thank You that You are right here.
Please help me see that all I need, I already have.
Allow me to find the joy and beauty even in confusing and trying times.
Awaken me to Your presence in all the big and small moments.
God thank You for all the graces You have given me in my life.
Allow those graces and the beauty of Your creation to point me back to You.
Call to me and I will answer you and tell you great and unsearchable things you do not know.
May the God of hope fill you with all joy and peace as you trust in him,
so that you may overflow with hope by the power of the Holy Spirit.