ACCEPTANCE

Accept:
1a: to receive willingly
1b: to be able or designed to take hold

David Bear broke his eyeglasses yesterday before our walk. Needless to say, our walk was quite interesting. We had to grab non-prescription sunglasses since I don't believe he has ever been outside without sunglasses. He was fine as long as we were inside our cul-de-sac, but as soon as we turned the corner to the busy street he grabbed hold of me quite tightly. I used to think that he grabbed my hand or arm because he was being a baby, but now I know it’s for guidance so I grabbed him back. I could tell he wasn’t being a butthead when he didn’t move for the on-coming bike (who should not have been on the sidewalk!) but that he couldn’t see the bike, so I told him what was going on. It took us a lot longer for our walk, but it was a walk worth taking.

As soon as we came home, I finished the paperwork for the Braille Institute and enrolled him in their summer program. It’s only taken 12 years, 11 months and 13 days for me to accept his doctor’s initial diagnosis, but my son is blind. He can’t see. After 12+ years of “Can you see …?” I am probably as tired of asking the question as he is of hearing it.

“No, Mommy. I can’t see,” is what he should say.

That would saved us both a lot of words over the past decade or so.

“No Mommy. I have no idea what a mountain is. I was looking at the top of the house across the street and I thought it was a mountain. That’s why the picture I drew you of a mountain looks like that.”

Well that explains that.

“No Mommy. I can’t color in-between the lines because I can’t see the line and oh yeah, I’m spastic. Didn’t the doctors tell you I had cerebral palsy?”

Well yeah, but I just thought that meant you would walk with a limp. (long story)

“No Mommy. I really am trying, but I just can’t remember the multiplication table.”

I threw that last one in. I still don't get why you can remember all the Pokemon, the strengths and weaknesses, and recount every battle but can't differentiate between the Associative and Distributive properties.

It’s okay David Bear. Mommy and Daddy understand. We love you. We accept you. We did not willingly receive the diagnosis, but we are able to take a hold of it and help you through it.

The Silver Lining

Every dark cloud has its silver lining, or so they say. Having a sick child was difficult, but it does have its moments.

THE ABSOLUTE BEST PART:
We got to enjoy every milestone with David.

Reaching: The first time he reached for an object he actually moved his neonatal doctor to tears. That stands out in my head because it is the only time in my life I have seen a doctor cry. She was the doctor who delivered the news to me about him being "75% brain-dead" and we had taken him back to the Neonatal ICU to visit after his pediatrician appointment. She put her stethoscope in her breast pocket to pick him up and he reached in her pocket to grab it. She cried (and me being me, I teased her!).

Walking: I can remember the absolute joy we felt the very first time he stood up. It took us all by surprise because he wasn't supposed to crawl, let alone stand. It was exactly 108-days between the time he first stood up and the time he took his first step. (I recorded both events, and in this instance, life is definitely stranger than fiction since he stood up on his "birth" date and took his first steps on his "due" date.) For 108-days we watched him trying to repeat his stand-up feat and at his "Due Date" party, he stood up AND took a step. It was totally awesome.

Seeing: See earlier post. Years later and we are still reliving those moments.

Reading: "Yo! Yes?" was the very first book he ever read. We trained him to read "Enough Inigo, Enough" but he had his own ideas. We spent months teaching him words, phrases, and sentences and then one day on an airplane, he picked up the book "Yo! Yes?" and read it cover to cover. He was three (3). [He is his mother's child, after all.] He wouldn't read again until he was five (5).

Eating: After one year of NeoSure ($90 per week!) and three years of Gerber Stage II foods (mixed with oatmeal or rice cereal), we didn't think David Bear would ever eat solid food. [Anyone who wants to judge us harshly for not preparing organic healthy foods should just graciously BLOCK yourself from reading my posts rather than suffer years of retaliatory abuse.] We'd become accustomed to carrying jars of Apple Sauce and Gerbers Sweet Potatoes. The Gerber folks were so totally AWESOME that they used to send us coupons for free jars of baby food and rice/ oatmeal cereal every month! But the August after he turned four, he decided he liked bacon. That was the very first solid food he ever ate. I recall it so clearly because it was the very last bacon in the house and years earlier, I got rid of my dog because after putting up with his shenanigans for months, he ate my bacon and egg sandwich right off the table. I still miss that dog. So glad I learned from that lesson and we kept the boy, who now does not eat bacon. Or oatmeal. I'm sure it's just a phase.

So many more firsts, each one which took longer for him to master and thus gave us more time to enjoy the ride.

The Basics
When David Bear was born a team of doctors surrounded him. Due to our great medical insurance, the hospital kept me in the hospital as long as they could. Compare that to my friends who were kicked out of the hospital within 48-hours after birth. I just can't imagine that, but you can.

Before the hospital would allow us to take David home, we had to learn infant CPR. We had parenting classes on how to care for our sick child -- how to bathe him, change him, feed him, hold him. Did you?

When he came home, they sent someone home with us the first night. You?

Despite our income they provided us 40-hours worth of in-home nursing care per month. How much time did your healthy child receive?

For the first eight years, we could get a same-day appointment with any of the nine specialists that were caring for him? How did your child do?

“What seems to us as bitter trials are often blessings in disguise”

Oscar Wilde

Life is what you make of it. Embrace the positive.

Miracle of Sight

“Every moment of light and dark is a miracle.”
Walt Whitman

David was born with Retinopathy of Prematurity, or ROP. It is a natural condition of severe prematurity. ROP is exacerbated by the use of oxygen, which causes extra blood veins to forms in the back of the eyes, blocking vision. ROP is responsible for more blindness among children in the United States than all other causes combined. His doctors cautioned us that at best case, he will probably never see without glasses. At worst case, he could be blind.

When he was three days old, he started seeing a world-renowned ophthalmologist from Newport Beach, California. At three months, his ophthalmologist performed the first round of surgery on both eyes. David was less than three months old and less than 3 pounds in weight at the time. He felt at that time that David needed at least one more round of surgery but that partial blindness was still the likely outcome.

One week later, on September 7, 1998, David Bear opened his big pretty eyes and I got to gaze into his eyes for the first time in his eighty (80) days of life. It was love at first sight.

For the next year-and-a-half David wore an eye patch on alternating eyes and we implemented an aggressive sight therapy program. At age two, his ophthalmologist performed his second set of eye surgery and he informed us that David had spots in his eyes and would need to start wearing glasses. With his glasses, his vision was 20/60.

A few years later David has his third set of eye surgery, this time to correct his wandering left eye and to bring both eyes into focus. This is when we discovered that David has macular degeneration. Prior to that day I had never even heard of MD, but now I see it everywhere. We left the hospital and David immediately exclaimed:

“I can see everything.”

He spent the next few days touching everything, saying “I can see the chair,” “I can see the table,” and “I can see …” He got tired of saying it long before we got tired of hearing it. With his new found vision he was no longer walking into walls, missing doorways when trying to walk through, or fumbling around trying to grasp things directly in front of him. It was so much more than we’d ever hoped for, but we still continued the Doman sight program.

February 16, 2006. Age 7.
I took David to see his doctor for his follow-up visit. We were concerned that David’s sight was deteriorating because he was standing closer to the television and looking over his glasses. We were convinced that he was ready for his next set of surgery, even though we had hoped we could have waited until after May.

The doctor examined David, and while he was talking to me, David started reading the letters on the wall chart without his glasses.

E

He could see the letter “E” at the top of the chart. His doctor became very excited and started conducting what seem like countless iterations of the eye chart in what was probably less than five minutes. I mistakenly thought the doctor was overly excited that David could read, so being the proud parent that I am, I explained to him that David had been reading for years. This world-renowned ophthalmologist then said

“Oh my God. It’s a miracle.”

David could see. Then reality sunk in (to the both of us) and Dr. Prepas clarified by explaining that David had astigmatism and now needed two pair of glasses – one for distance and one for seeing. My baby can see.

When we returned home, his father was waiting for us. David Sr. usually takes the Bear to the eye doctor because I get lost. In fact, he takes Bear to all the appointments that don’t involve needles or the dentist. As soon as he saw his son without glasses he immediately asked him if he had lost them. David Bear proudly exclaimed that it was a miracle and he didn’t need glasses anymore. Of course his father was skeptical until I confirmed the doctor’s diagnosis. My husband started crying right there at the front door.

That night at the dinner table for the first time, my son sat across from me, and I gazed into his beautiful dark brown eyes, and he smiled at me and for the first time, I saw my beautiful baby boy looking back at me.

The next morning, David Jr. proudly informed me that he dreamt that a miracle occurred and that he could see without his glasses. Then he flashed me his big beautiful smile and went for his morning bike ride around our cul-de-sac, without his glasses.

Our blind-at-birth baby can see, without glasses. Sometimes I wonder if he ever needed the surgery or the patches or the glasses. Was he ever vision-impaired? Did I imagine that he would grasp at an item several times before he could finally focus on the one he was reaching for, or did I imagine that my son was playing today without glasses on. I gaze into his beautiful eyes and think I must have imagined that his eyes were slightly crossed and wandered. There are only slight traces of any evidence that his eyes ever wandered. His face is so free from scars that he couldn’t have worn an eye patch for four months. I must have imaged that my baby was ever blind. Is this for real?

“There are two ways to live: you can live as if nothing is a miracle; you can live as if everything is a miracle.” Albert Einstein

Some people say it’s a miracle, but I prefer to believe that this particular miracle was helped with two sets of cryotherapy, one set of eye surgery, two years of patch therapy, five years of aggressive vision therapy, and the full faith that our child was always intended to have sight. Miracles occur, but they aren’t always cheap or easy.