All I Want for Christmas as a Special Needs Mom

Has the fear of losing your precious child ever gripped your mother’s heart? Maybe it was Black Friday and you were shopping in a crowded store, juggling your son or daughter or two, three, or more young children.

Then fright snatched your breath. In an instant, your child had disappeared, and you couldn’t find them anywhere.

Or perhaps you’ve experienced a terrible moment of your child going into a medical emergency. You might have stood back feeling helpless, praying that your child would be okay.

I think just about every momma can share their moment or moments of that thought crossing their mind: “What would I do if I lost my child?”

These terrifying events can remind us just how priceless our children are. We thank God for keeping them safe and healing their bodies.

And after that scary day, we likely hug our children more often and live with deeper gratitude for God’s blessings in our lives.

For many years, I existed in a constant state of the paralyzing fear of losing my daughter. Forever. I’ve lived through watching Bethany Grace slip away right in front of my eyes more times than I can count. The miracle of her life and her joyous outlook on each new day has transformed my perspective on life. She has taught me how to truly begin living.

Those Life-Changing Moments

One of the most powerful and miraculous events I’ve ever witnessed was when Bethany Grace was still in the Neonatal Intensive Care Unit. She had survived to ten-weeks-old and needed a second set of surgeries in order to be able to come home with us.

The procedures were successful. But two days later, she developed severe pneumonia with a high fever. Early in the morning, I slid open the glass door to her intensive care room and gazed at my very sick baby. My heart ached with a pain I had never known before. I watched her struggle to simply inhale, then exhale. Breathless, I watched as cardiac arrest stole the color from her body. As more and more doctors and nurses swarmed the room, I stepped back to lean against the wall. They pumped oxygen. They administered CPR compressions. I stared. Helpless. Desperate. All I could do was pray.

I pleaded with God. “Please, Jesus. Please give her back to us. I know that you’re carrying her in your arms back home with you.

But please. Give her back to us even if just for a little while longer. I’m not ready to let her go.”

The medical team stepped back. The silence in the room was deafening. They had called it. Then suddenly, Bethany Grace took a deep breath on her own. After all their efforts had failed, God breathed life back into her tiny lungs. I collapsed in joy thanking God.

With each time I face a critical event with Bethany Grace, my gratitude for every new day only grows. The mornings that she’s feeling okay, she bursts out of her bedroom door cheering, “Morning!” Just the fact that she’s able to walk and say some words at age eleven is a miracle. The fact that she’s alive is a miracle so many times over, beginning with my pregnancy.

“This is the day that the Lord has made; let us rejoice and be glad in it” (Psalm 118:24, ESV).

This verse touches my mother’s heart in deeper and deeper ways every time I experience a crisis with my daughter.

My Journey Through Ingratitude

But I haven’t always had this perspective on life that I’m sharing with you today.

Soon after Bethany Grace came home from the NICU, that gratitude in her hospital room that morning, it quickly faded behind twenty-four-hour caregiving with her hooked up to four machines. My thankfulness for her precious life was replaced with bitterness for how difficult and painful my reality had become and how it had affected our family. My joy became buried under my severe anxiety and depression. I didn’t want my life. I longed to be out of the house having coffee with other moms, going to playdates, and simply rocking and nursing my newborn baby.

My faith in God’s goodness shattered. How could he continually let my daughter suffer like this?

The Greatest Gifts in Life

“Every good gift and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation or shadow due to change” (James 1:17, ESV).

I wasn’t able to accept one of the greatest gifts until I fully embraced my life as a special needs mom.

I wasn’t able to truly begin living until I released my need to understand how God could be sovereign and good and at the same time allow me to experience such suffering, loss, and grief.

This past year, someone asked me what present I wanted for Christmas. I easily answered, “If both of my children are out of the hospital, and we are all home together, then God will have blessed me with all I need in life.” See, my son also has a rare genetic disorder with multiple medical complications (rare as in he was diagnosed as the thirteenth-known case in the world with his particular disorder).

That special present that God had carefully created just for me and lovingly wrapped, I had left it sitting there under the tree for years. When I finally chose to open it, God filled me with gratitude, joy, peace, and love beyond any measure I could ever have imagined.

All I want for Christmas as a special needs mom?

To simply sit with my husband and children on Christmas morning

grateful for our joyous life through Jesus’ birth and for that simple moment of watching my children have fun.

What are you most thankful for today?

Leave your thoughts in the comments below.

Holiday Blessings!

Kristin

Kristin Faith Evans is an author, a speaker, a mental health therapist, and a special needs mom. Her greatest passion is walking with others on their journey to deeper faith and emotional healing. As a Licensed Masters Social Worker and with her Masters in Christian Education, she has served in youth, camping, and retreat ministries and is experienced in Christian counseling, couples and family therapy, substance abuse treatment, and crisis counseling. Kristin lives with her husband, Todd, and their two children in the Nashville, TN area. When she is not enjoying life with her family, writing or working with clients, you can find Kristin training for triathlons, reading, or simply being out in nature. Visit her author website at www.KristinFaithEvans.com