Living With Cerebral Palsy

When she was born there was speculation that something was not quite right. A blood test was taken and after several days the results were in. Having just returned from the doctor’s office, my parents called a family meeting and shared with us that our baby sister had just been diagnosed with a rare form of Down syndrome. There would be many unknowns ahead for our family.

She was 8 days old and I was 16. I knew very little about Down syndrome, but the hard realities of living life amidst the challenges of a disability were all too familiar to me. When I heard the news my heart shattered like hand-blown glass that had been dropped and splintered into a thousand tiny fragments. Shocked and grief-stricken, I locked myself in a room, found a well-worn spiral notebook and a pen, and began composing a demanding letter to God. I told him that he had made a mistake, and he had no choice but to fix it! My sister was NOT supposed to be born with a disability! I could not imagine her having to endure similar hardships to what I had experienced.

I believe wholeheartedly that God is a God of miracles, and nothing is too hard for Him. So, healing Down syndrome would be no problem, and by performing such a miracle God would certainly be glorified. Time passed, and the miracle I prayed for did not happen. Instead, for more than 20 years now, I have had the privilege to experiencing the miracles of love, joy, peace, patience, kindness, goodness, faithfulness, forgiveness, gentleness, and simplicity in their purest, most beautiful forms, through the life of my younger sister, who happens to have a tiny piece of extra material in her genetic makeup.

Looking back over these years, I can see God in His loving kindness calmly listening to me rant, identifying with my grief, and staying true to His word that all things work together for the good of those who love him, and for His glory. (Romans 8:28) I’m so thankful God did not answer my prayer the way I hoped He would at the time. My sister having Down syndrome was not a mistake. She is an image bearer of God, fearfully and wonderfully made. Having Down syndrome is a means by which God’s character and glory are put clearly on display. How blessed am I that I’ve been able to experience it up close and personal!

If today finds you face to face with a weighty unknown, walking through circumstances that feel too hard to bear, or just weary on the journey of life, let me encourage you to honestly pour your heart out before the Lord. Know that you are seen, fully known, and completely loved by God right where you are. He invites you to share your heartache and burdens with Him, and exchange them for rest. (Matthew 11:28)

Lean into the community that God has placed around you. Friends, family, Church members, professionals, and those who have walked a similar journey, are there to help. We’re not meant to walk through life alone, but to bear one another’s burdens. (Galatians 6:2)

Lift up your eyes. The Lord has promised to be your help and the lifter of your head. (Psalm 121, Psalm 3:3)

Look for miracles in the everyday moments and the hard circumstances of life. It’s easy for us to look at miracles from a macro view, and become discouraged or disillusioned when we don’t receive that miracle we prayed for, but zoom in on the details of your life and you might be surprised by the miracles you discover. I believe it is just as much of a miracle for God to give us the grace and strength to endure in difficulty, as it is for Him to remove the trial from us. It is miraculous how God uses hard circumstances to sanctify, shape, and bless us. Record your miracles in a journal or voice memo as a way to be able to look back and recount the good and faithful deeds of the Lord. If you ask God to open your eyes to the miracles all around you I assure you you will not be disappointed.