“God, please, don’t let this be true.”
Like most mothers, I knew something wasn’t right from the start.
Our precious, angelic baby, Catie, was just a little too quiet, even at one day old. At two days old, I noticed her left eye appeared slightly different from the right. Her pediatrician confirmed she had ptosis, a droopy eyelid, and that it might go away or it might not. We’d have to wait and see…
I’m not good at waiting.
I bundled Catie up for a visit to Children’s Hospital, where the ophthalmologist told me human eyes can move any which way before three months and that I shouldn’t jump to conclusions. Then, I heard him say to his resident who was taking notes, “This might be the real deal, but we have to wait and see…”
My husband and I reluctantly turned to the Web. We knew we would read and see frightening things, but if we could find out more, we might be able to do more to help our beautiful baby. We didn’t understand the language: Exotropia. Esotropia — what’s the difference? What did it mean? We were not sure what all the big words meant, but there was one sentence that was too clear: “These kinds of eye movements are often attributed to an injury to the brain.”
No, no, no, no, no, no, no!
I wish I could tell you that my family turned to God with trust and understanding, but we didn’t. We turned to God with fear and rage. Why was this happening? I had a normal pregnancy. I had a normal delivery. We should have a healthy baby.
We did more research, visited more doctors and gained several more opinions. Time was flying, and Catie was three months old. We took her for eye tests, MRIs and appointments with specialists. She was very quiet — too quiet. She was still — too still.
We found ourselves asking God, “What is wrong with our baby? Please help us.”
Fifteen doctors and nearly seven months later we learned Catie suffered a “vascular event” (stroke) in her development, which damaged her left midbrain. The neurologist told us her right hand would definitely be affected, but he wasn’t sure about her walking, talking or cognitive ability; her talk center was also damaged.
If you’re smiling now, it’s only because you know Catie. It has been 15 years since the day we learned God chose us to be a parent for a child with special needs. It’s not a job we applied for, wanted, nor ever felt we could do, but God knew better. He always does.
Most new parents are exhausted; parents of special needs children are depleted.
Even just writing about these early years is draining.
If you’re in this stage now, please know you’re not alone. The constant worry we felt about “deficits” and “anomalies,” and all of the other ugly words, had to be overcome with consistent faith.
“What if she never walks?” God has a plan for us.
“What if she never talks?” God will help us find a way to help her.
“How will she live?” God tells us not to worry.
“How are we going to do this?” God is going to open our next door.
“I’m scared.” God is walking with us.
At three-years-old she took her first step. Then, the words started coming. Her tiny voice demanded our attention, and all we could do was cry. We had received a miracle that too many of our special friends have yet to witness. Please pray for them!
Now what? Now where?
We’ve been asking these two questions for the past 15 years. Now what therapy should we try? Now where’s the best doctor? How can we help her more? How will we get through the Individualized Education Program? How will we pay for this? What will she do?
We’ve learned the answers are ultimately the same: Trust God. Trust yourself. Trust your kid. Pray and persevere. Realize that every parent, not just special needs parents, wonders if they’re doing the right things.
God knows all the answers.
Wait and see…