Four years ago, our life was a blur of diapers, pain meds, crying (hers and ours) eye drops, eye patches, doctor’s office visits and hospital procedures.
Adelaide was 12 weeks old when she was diagnosed with unilateral primary congenital glaucoma—a fancy way of saying glaucoma in her left eye. We were brand new parents with a brand new baby still trying to figure out how to do simple things like bathe our child or whether or not she needed to be on a “nap schedule”, when we were suddenly shoved into a fight to save our daughter’s eye sight.
I honestly don’t remember much from that first month after her diagnosis. It was all so overwhelming—my only coping mechanism was just staying focused on the next medication dose, the next doctor’s appointment, the next hospital exam.
Looking back, it’s an absolute miracle that I managed to keep my job that month. Being the sole breadwinner for our brand new family of three, I didn’t have much choice. It was an awful scenario to be in.
“Mommy, I feel my heartbeat in my eye”
I froze. Forced myself to exhale, and then asked her some clarifying questions, begging her answers to point to some completely benign explanation.
My mind started racing with the seemingly innocent events of the past two weeks.
…That time she asked for the blinds to be closed because it was “too bright” in the playroom.
…That time she told me her head hurt “inside”.
…That time at the playground when I looked at her, and her eye seemed larger than it used to.
…That time she completely misjudged a toy that was in her peripheral vision and wound up with a nice scrape on her cheek.
Glaucoma is a lifelong disease that has no cure. Even in spite of 3.5 years of steady eye pressures and a normal life, I have a section of my brain that files away all of the little things she says and does that could possibly be an indicator of a problem.
I couldn’t sleep all weekend. I finally resorted to drugs and got a decent six hours of sleep Sunday night, but the tightness, the heavy weight on my chest, there wasn’t anything I could do to make that go away. That was the fear and helplessness that I remember so vividly from our life four years ago, resurrecting its ugly head in the face of Adelaide’s possible relapse.
Adelaide had seven exams under anesthesia in eighteen months, between the age of 12 weeks and 23 months. Seven times she was drugged into unconsciousness. Seven times she was taken away from mommy and daddy in a scary, sterile, hospital setting. Seven times her eyes were forcibly held open while the doctors performed their exam. Seven times she woke up from her drugged slumber wondering where she was and why she felt so funny. You can’t explain this stuff to a baby, or even a one year old. And who knows how much of these experiences gets imprinted on her subconscious.
For Adelaide, the most obvious impact these procedures had on her, is her fear of water in her eyes. It took us three years before she would let us wash her hair in the bath tub without screaming. She’s in swimming lessons right now, and completely refuses to put her face in the water. Not even with goggles.
Eye drops? Forget about it. Even the mention of eye drops sends Adelaide into a fit. But eye drops are crucial to a successful office eye exam. It was critical that we get Adelaide over her fear of eye drops so she could complete an eye exam without needing to go under anesthesia.
With our appointment set for Tuesday, I spent all day Monday working with Adelaide on eye drops. It took a lot of time, a lot of patience, some pushing and a good ol’ heart-to-heart conversation, but she did it. She let me put eye drops in her eyes! THREE TIMES!!!!! That was the first deep breath I had taken in four days. Knowing that we had a way to get eye drops into Adelaide’s eyes without a complete meltdown, gave Matt and I immense hope for a successful office eye exam.
Tuesday afternoon came, and Adelaide ROCKED her eye exam!!!!
She was cooperative, and happy, and responsive—everything we could have hoped for. And beyond that, her pressure readings came back NORMAL!!
Matt and I were both teary-eyed when the doctor told us her pressure readings. I walked out of that exam room feeling light and happy and like the world was a little bit brighter.
Beyond having normal eye pressures, Adelaide’s vision is 20/20 in BOTH eyes. Four years ago, her optic nerve was in the process of disconnecting itself from her left eye. Today, she has perfect vision.
Glaucoma is exceptionally rare in children. And Adelaide’s single surgery and recovery is even more remarkable. Most babies and children with glaucoma endure MULTIPLE surgeries with years of daily eye drops. We are so incredibly fortunate to have missed all that.
Each specialist we work with is completely amazed by Adelaide’s story, and even more amazed by her fantastic vision.
Yesterday’s office exam could not have gone better, and I am so happy to go back every six months with our little champ, and monitor her eyes as she grows.
I am thanking God today for the amazing gift of sight. Go look at something beautiful today and soak it up.
Life is beautiful!