God of the Smooth and the Rough: Parenting a Child with a Disability

The essay “Welcome to Holland,” by Emily Perl Kingsley, is familiar to many parents of children with disabilities, especially children with Down syndrome.

The piece relates the experience of raising a child with a disability to planning a dream-come-true trip to Italy. You make hotel reservations, buy tourist books, perhaps learn a little Italian, then purchase your plane ticket, and off you go.

Just before landing, however, the flight attendant announces that you are circling the runway to Holland.

Holland?

“No, Italy,” you say. “I’m going to Italy!”

Kingsley writes of the devastation and shock of this abrupt change in plans. When you realize that you aren’t going to get to see and do the things you dreamed of in Italy, it is confusing and heartbreaking. But in time, you adjust. You begin to let go of what you expected and try to open up to what is before you.

As you visit, you learn that though it lacks the splendor of Italy, Holland has its own beauty and magic.

If I were to add a detail to both the Holland and the Italy of Kingsley’s essay, it would be that each also has its own rough terrain: My son Nicolas was born with Down syndrome.

In Proverbs 3:5 the Lord reminds us to trust in Him with all our hearts and lean not on our own understanding. These words guide me along the small and large challenges of parenting a child with a disability.

Nicolas, now 26, might best be described as a survivor. Had he been born twenty years earlier, 1978 instead of 1998,  or even in 1988, he might not be alive today. Medical technology needed time to catch up to Nic, and people’s expectations haven’t always kept up with him either.

Nic survived the intimations and outright statements that his life was not worth saving as the genetic specialist told me the news of his Down syndrome in my eighteenth week of pregnancy. In her next breath she asked when I would be aborting him. My husband Al and I received the message early on that this child’s life, if he lived, was going to be a detriment to our own.

I was sent for an ultrasound because my belly was larger than it should have been at eighteen weeks. The technician, gazing at the monitor as she moved her device around my belly, simply put her equipment down and walked out of the room.

Al and I were left by ourselves in this darkened space to let our thoughts run wild. Why did she leave like that?

The attending physician entered. He informed us that what had shocked the technician was the sight of thickened flesh on the back of a baby’s neck, suggesting a problem.

“It could be Down syndrome,” the doctor said, resuming the ultrasound and staring at the monitor, “or nothing at all.”

Furrowing his brow and turning to us, he added, “Or something not conducive to life. Would you like an amniocentesis to find out for sure?”

Al and I knew we wanted this baby — our second child. We had miscarried only months before.

Did it matter what this baby would have? No.

Did we want to know anyway?

We did now.

The doctor performed the amniocentesis, inserting the long needle into my belly and drawing out the necessary fluid for testing. He then sent us home to begin the wait to find out what, if anything, was going on with our child.

I had been a special education teacher for several years, but I wondered whether my teaching experience prepared me for the lifetime commitment of parenting a child with a significant disability. Trust in the Lord, trust in the Lord. Try not to lose your mind.

The other news we’d find out — information not verifiable through an ultrasound back in the 1990s — was the baby’s gender. We already had a daughter, and my husband sometimes mused that it would be fun to have a son. Amniocentesis would reveal this as well, and we could look forward to some gender-specific shopping for what we hoped would be a healthy baby.

We also remembered, with guarded optimism, that the information on the ultrasound could mean nothing at all.

Still, there was the third possibility to anticipate — that of a child who would not survive. I could feel this baby just starting to move in my womb. How could this little one possibly die inside me?

The wait for a diagnosis was the longest ten days of my life. Al and I could only hold on tight to this roller coaster car slowly ascending the hill of anticipation. There was nothing to do but wait and pray.

But pray for what? Again, the invitation was to trust in the Lord and lean not on our own understanding. It seemed especially relevant now that we found ourselves understanding so little of what was happening.

At the end of the ten days, we received the phone call that our baby would live and would have Down syndrome. It was now time to get ready.

We also found out that our baby would be a boy, a little brother for his big sister. It was now time to shop.

About a year ago, I came across a note I wrote at the beginning of our ten-day wait. I saw the date, November 7 of the previous year, and the opening “Dear Lord.” I began to read:

Dear Lord,

You know the anxiety that’s in my heart right now. The news we got yesterday disturbed and frightened us. Will our baby be “normal”? Will our child have Down syndrome? Will our child have some other chromosomal abnormality — one that will lessen the quality of his life or not give him a life at all?

Where is faith at this time? Mine is failing me. Despite the odds, I choose to see the negatives and to feel betrayed by You, as though somehow I’m “better” than all of this. I’m sorry. I want to do better.

Dear Lord, I lift my fears up to You. I ask that you bring my family and me peace these next ten days as we wait and that if it be Your will, give us a physically and mentally healthy new baby in March.

I wish to let go of that which I cannot control and ask You to bless it and let Your will be known to us. And if it’s all a big mistake, that would be really nice, too.

Cradle this child in Your arms. Heal any sickness that he may have. Stroke his hair, cuddle and caress him the way I hope to someday. Bless her abundantly and give her health.

Hold this baby’s family close. Give us strength to understand and to follow, to trust and to keep believing. Help us to hear the positive voices that are You giving us peace.

I let go of my fears for this child and ask You to let Your will be done and for our acceptance of it.

Love,
Gerry

The first time I read this letter, its contents surprised me. I expected to read an impassioned plea for a “normal” baby and nothing more. I could still remember my rage when the genetic counselor took the phone from the nurse and advised me to terminate the pregnancy before I had even shared the news with Al. “Normal” seemed to be all that mattered.

What I read on that little sheet of notebook paper, however, had much more to do with fear, trust, faith, and just really wanting to have this baby.

In the end, I believe I got what I prayed for. We did get second child we wanted so much. Though the trip to Italy was indeed detoured to Holland, even as I read what I’d written, I could see myself asking the Lord to walk with us on the rough terrain toward our dream-come-true destination.

Life with Nicolas continues, with friends we would never have met in Italy, with teachers who believed in our child and teachers who did not. Our trip has had long seasons of health as well as times of life-threatening illness for Nic, who battled respiratory and neurological issues not typical of Down syndrome.

There have been steps forward and steps back for Nic and our family. In letting go of our own understanding, we put the future in God’s hands and trusted Him for what was to come. He held our family close and still does. He guides us toward the people and places that have developed that understanding, as He promised.

Life with Nicolas continues, even in the painful loss of his father to cancer in 2014. Our life with Nicolas continues, in the joy of seeing him as a young man living and working in the community, with friends and supports. God’s guidance remains, there when we seek it, and it remains even when we are overwhelmed and not looking.

Proverbs 3:6 reminds us, “In all your ways acknowledge Him, and He shall direct your paths” (NKJV). The Lord directed us to Holland, not Italy, and I believe that He walks this path with us daily.

Holland does have rough terrain at times and does not possess the grandeur of Italy. But Holland is a nice place too. Nic and I have been there a while now, so we know.