I had an unusual experience last week. I received a phone call that my granddaughter needed an urgent test at Children’s Mercy Hospital. I dropped everything I was doing and headed to the hospital.

It had been nearly 20 years since I’d been at Kansas City’s downtown Children’s Mercy,

Likewise, it had been about the same period of time since Kelsey received medical care at Children’s.

Yes, for more than 40 years, I basically lived at children’s’ hospitals, from California, to Indiana, to Arizona, to North Carolina – finally landing in Missouri.

Many of the surgeries were grueling. Frankly, the surgeries were much harder on me, mom, than they were on Kelsey.

Well, I can’t exactly say that.

Kelsey was terrified. She knew it would hurt. She knew something would be changed when she woke up, perhaps a body cast or a hundred stitches.

Most of all, she knew she didn’t want to be in the recovery room or the hospital without me, her protector.

One of Kelsey’s last procedures was a spinal cord surgery. The procedure took her three months to heal, which felt like an eternity.

From the beginning, I told the doctor and nurses to have me waiting in recovery.

However, sometimes hospitals know more than moms. As a result, they told me she would be fine and instructed me to wait in a waiting room.

Eight hours later, after a meticulous surgery, the recovery nurses came (running) looking for me. They said she repeated “I need mom” over and over again. And they couldn’t calm her down.

I washed up, gowned up and hurried to her bed.

Oh, my goodness, Kelsey looked horrible. She was swollen, laid on her side, next to a basin, extremely nauseated, and crying so pitifully. In addition, she had stitches on her back from her bum to a few inches below her shoulders.

Her eyes met mine and she whispered to me, “It hurts.”

Gosh, I am crying right now.

If their lives aren’t hard enough: the day-to-day work, the modifications, the feeding and bathing routines, the delay and battle for state-run services, the special education struggles, the equipment, the children’s hospital visits and the round-the-clock care.

Kelsey added a 51st surgery to the list.

Anyway, returning to where I started, I was at the wrong Children’s Mercy Hospital to see my granddaughter.

The granddaughter was at another Children’s Mercy location. I had driven to the wrong hospital.

I returned to the hospital entrance and handed the valet the ticket for my car. He smiled and said, “Short visit?”

I responded, “Wrong hospital.”

For the next 10 minutes, I waited by the entrance where multiple families were loading their children into their cars. I could easily see that had had some procedure.

Some of the children had IV’s. Some were in casts. Some were vomiting. Some were crying and some looked swollen and terrified. Many had developmental disabilities.

My eyes welled with tears. I knew where they were.

Even more significant, I knew the journey, they were facing. Gosh, my heart and soul hurt for them.

I put my sunglasses on, so the valet would not see my tears.

I tipped him, kept smiling and jumped in my car.

I bawled the whole way home.

No one knows, unless you’ve walked the path. It is commotion, confusion, anxiety, helplessness, disorder, ignorance, vulnerability, chaos and exhaustion, all wrapped into one focus, raising a child with disabilities.

It is a lifelong journey for them, and you.

– Diane Mack is coordinator of Putting Families First, Jackson County’s Family Week Foundation. Email her at jacksoncountyfamilyweek@yahoo.com or visit www.jacksoncountyfamilyweek.org.