Raising a child with a disability is hard, painful, and scary

For 20 years, my family has been on a journey that is different than most families.  My husband and I were young and in love, and the natural consequence of young love is children.  So at the age of 25, I gave birth to a precious baby boy.  That boy was very precocious and he amazed everyone with his giftedness.  No joke, he was reading before he was out of diapers, but he also had social and communication delays that concerned us.  When he was three years old, we contacted our school system and had him evaluated.  He was amazing and gifted, they told us, but they also told us that he had autism.

Autism.

That six letter word changed the trajectory of our lives.  Suddenly our life consisted of therapists, IEPs, appointments, psychologists, evaluations, special education, and lots of meetings.  I was not prepared for this.  I was a stay-at-home mother and I was expecting the type of family life that my friends had, you know, playdates at McDonalds and trips to the strawberry patch.  Instead we had forty hours a week of therapy to help our little boy.  I was thankful for the help, but this diagnosis and lifestyle was certainly #NOTMYPLAN.

If you have a child with a disability, you can relate to #NOTMYPLAN.  You didn’t plan on cerebral palsy.  You didn’t expect a child with ADHD.  You were surprised that your child had downs syndrome. And you never in your wildest dreams thought your baby would be blind at birth.

Suddenly your parenting journey consists less of parks and playdates and more of sterile doctor’s offices with videos blasting in the waiting rooms.   It consists of confrontation with the school system over services.  It is filled with phone calls over insurance and medicaid and mental health benefits.  There is lots of driving to therapy and IEP meetings and doctor’s offices.  This was not what you expected, nor what your friends were doing.

My son is now 19, and for me, the hard, exhausting part is over.  He is doing amazingly well and is making progress towards independent living.  But as look back and I reflect on my parenting journey, I describe it with three words.  Hard, painful, and scary.

Raising a child in and of itself is emotionally and physically taxing.  But when you add a disability to the mix, it becomes exhausting and is often more than you can bear.  What is easy for most children is monumental for your child, and you have to give much more than you have.  You weren’t prepared for this.  Your patience wears thin.  Frustration turns to anger.  Late nights and early mornings are the norm.  It’s just plain hard.

Raising a child with a disability is painful.  Seeing how your child is different from their peers breaks your heart.  Soccer fields and parks and churches are places where your child’s differences stand out.  When other children are mean to your child because he is different, you are furious.  And when your beloved child is rejected or left out, your heart breaks.  Over and over.  And let’s not even talk about dealing with the school system.

Raising a child with a disability is scary.  Late at night, when you toddler is sleeping one room over and you can’t sleep, you wonder who will take care of your child if you die.  You wonder if your child will be able to live alone or hold down a job.  You wonder what will happen to them when they are 60, and you are in heaven.  Who will take care of them?  Facing your child’s future can be flat out scary.

As I reflect on our hard, painful, and scary journey, I feel the weight and enormity of it.  I don’t know how I did it.  But I do know that I was not alone in the hard, painful, and scary.  As a Christian, I believe that God was there with me in the hard, painful, and scary.  He gave me strength, healing, and courage.  He gave me patience, hope, and even joy. And most importantly He sent friends, family, and skilled professionals to give me encouragement and support.  I was not alone.

My disability journey, and likely yours, is not over.  Children with disabilities grow up to be adults with disabilities who continue to need some level of support.  In some ways, the hard, painful, and scary journey does not go away when the child becomes an adult. But neither does God’s grace or the help of supportive professionals, friends, and family.

Our journey has been hard, painful, and scary, but we’ve made it this far, and God will give us the strength to continue.   Every parent of a child with a disability takes it one day at a time – one step at a time – one goal at a time.

I want to applaud each of you for your own heroic efforts in raising your children.   If they could thank you, they would, but if they can’t, let me say it for them: thank you.  Thank you for enduring the hard, painful, and scary to make a better life for your child.   Hang in there – it’s going to be worth it all.

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