A letter from my 61-year-old self to my 35-year-old self:
I know you’re scared. It’s been obvious from the beginning that something was not right with Joel’s development. Lack of oxygen during his birth, severe jaundice, an arrogant doctor who didn’t answer your questions and didn’t insist on hospitalization for the jaundice, floppy muscles, delayed developmental milestones. Finally, walking at two-and-a-half—oh, the celebration on that day!—but now, at three, your beautiful boy is pulling hair, throwing constant tantrums, can’t tolerate loud noises or changes in routine, and has such a miniscule attention span that he can’t seem to learn anything new.
I see how your fear paralyzes you, making it hard to reach out for help. With whom do you share your innermost fears? Your husband has fears of his own he’s not ready to face. Your mother taught you to fear. Your friends are raising “typical” children. Your pediatrician keeps saying “let’s wait and see.” Your pastor, finally, courageously says what you’ve been thinking but were afraid to voice, “Something’s not quite right here, Kathy. Get another opinion.”
So, you find a physical therapist who suggests having Joel tested for the multi-handicapped preschool run by your school district. The school psychologist comes to your home to test your son. The test results arrive in your mailbox three weeks later. Moderate mental retardation (we call it intellectual disabilities today). I watch you stuff the results into the back of your desk drawer—so far back that the light of day won’t reach them. And then I watch you stuff the fear into the deepest recesses of your heart. It’s dark there, as well.
It took so long to get a diagnosis. Again, at age 5, moderate mental retardation and pervasive developmental disorders. And finally, at 12, autism, helping to explain the unexplainable behaviors. And through it all, the fear and stuffing of feelings.
Reaching back through time, I want to throw you a life preserver, Kathy. It’s a scripture, from the Beatitudes: You’re blessed when you’re at the end of your rope. With less of you, there is more of God and his rule (Matthew 5:3, The Message).
Do you hear that, Kathy? You’re in a place of great blessing right now.
Yes, it hurts to watch your son struggle to learn the simplest of tasks. Yes, it’s painful to watch him lash out at the people around him. Yes, it’s maddening that your husband and mother can’t see past their own pain right now to help you with yours.
But God can.
You’re blessed when you’re at the end of your rope. With less of you, there is more of God and his rule.
God gave you feelings. Allow yourself to feel them!
It’s okay to be angry. Anger motivates us to effect change in our lives. Get angry with that doctor. Tell him you want a second opinion! Get angry with your husband. Tell him you need to see a marriage counselor to make your way through this new terrain! Get angry with God. Let your anger pour out until it loses its hold over your life. God is big enough to take your anger. If you don’t believe that, just read the Psalms.
It’s okay to be sad. Sadness is a natural and normal response to having a child with developmental disabilities. This wasn’t God’s plan for Joel’s life. Lack of oxygen at birth, and severe jaundice that wasn’t treated correctly are reflections of a fallen world. Cry out to God. Cry with God. Let the tears pour out until they lose their hold over your life. God cries with you. He collects your tears in a bottle, each and every one.
It’s okay to be afraid. You’re in new territory. You don’t know the way. No one has given you a road map. Right now, you are your own map-maker. That’s scary. Go to God, the master Cartographer. The One who not only made the map, but made everything that’s on the map! He knows the way. He has a plan for Joel’s life. He has a plan for your life. Go to God with your worst-case scenarios. Pour out your fears until they lose their hold over your life. Let God lead you each and every step of the way.
Admit it now, Kathy, while Joel is still young. You are at the end of your rope. You can’t hold on much longer. You’re lost, and you don’t know the way forward.
And in admitting your powerlessness, God’s power will begin to flow (2 Corinthians 12:10). And as His power flows through your cracked and broken places, your fear and anger and sadness will be washed away.
I tell you this from the vantage point of where I stand today, twenty-five years later.
You’re blessed when you’re at the end of your rope. With less of you, there is more of God and His rule.
When you let go of that rope, Kathy, God will bestow on you a crown of beauty instead of ashes, the oil of joy instead of mourning, and a garment of praise instead of a spirit of despair (Isaiah 61:3).
The crown of beauty is waiting for you. I promise. I am wearing it today.
Your older, wiser self
Dear Readers, I am excited to announce the release of my newest book, The Spiritual Art of Raising Children with Disabilities (Judson Press).
The Spiritual Art of Raising Children with Disabilities uses the mosaic as a metaphor for putting the pieces of life back together again, and the spiritual disciplines as a framework for daily works of healing and restoration. It offers bite-sized pieces of poetry, scripture, personal narrative and teaching on the grief process, the upside-down nature of the Kingdom of God, and the spiritual disciplines. Each chapter concludes with a reflection exercise to gently lead the reader into a deeper conversation with God. It’s a great book for personal devotions, support groups, family, friends, spiritual directors, coaches, pastors and Christian Educators. Click here to view the book’s details.