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.

FALSE HOPE

There was a time (2000 - 2002) when I would sit with the parents of preterm babies and share David's story. Doctors would call us up when a 2-pounder was born and we would show them David and point out that he was much smaller and sicker than their child and that they should hope for a great outcome. That was back when I thought anyone could get the same results we got if they did what we did. I don’t believe that anymore.

After watching parents lose babies which were much stronger and larger then Bear and after sitting with someone who lost his very healthy wife during childbirth due to a ruptured brain aneurysm, I stopped believing. I started believing that David was the exception that made the rule, even though I know of lots of exceptions to the rule. I withdrew from sharing David’s story because I didn’t want to give people false hope.

Then David's eyes miraculously self-corrected (2007) and his miracle was so overwhelming that we had to share it. So we did. We shared it with family, friends, and strangers. We told the story and offered David Bear up as proof that God was still in the healing business, but then one crazy person decided that we had cheated death and made death threats (Dec 2007) against our child. Our first reaction was total shock. I personally have been on the wrong side of a gun twice (another lifetime ago) but that did not prepare me for the feeling I had when someone threatened MY CHILD! If I could write as vividly as Henry Wadsworth Longfellow I would still not be capable of adequately describing how I felt. Anger bordering on rage was overtaken by intellectual reasoning which allowed us to ignore our first instinct to arm ourselves and eliminate the threat. We elected to go through the tiresome process of getting a restraining order against the insane woman.

If you've never tried to take out a restraining order, I assure you, it's not as easy as they make it seem on television. Judges don't just like to take your word for it. They prefer to have open hearings and allow both sides to present their case before ruling. Even with the very threatening phone message, there was no guarantee that the judge would issue the most restrictive restraining order. As luck would have it, the real violent woman (as opposed to the medicated mild-mannered) showed up to court. She was so verbally abusive and clearly dangerous that not only did we get the restraining order, but she ended up needing a police escort from the building because the people in the courtroom instantly fell in love with David Bear and the judge feared for HER safety. This is one of the few times I've felt completely vindicated while living in Orange County.

Despite the restraining order and the threat's absence from our lives, I once again withdrew from sharing David’s story. [Keep in mind that this was the same time as his failed brain shunt surgery and emergency brain shunt surgery as well as the first tumor scares, so we were a bit overwhelmed.] We did not want to risk running into another person who wanted to harm our child. We were motivated by fear, and fear is a powerful force with which to be reckoned. Three years later and I still can’t figure out why anyone would want to hurt our loving child, but as my family says, “there’s no accounting for crazy.” Unfortunately, we withdrew from life as well. We were paralyzed. We are only now starting to breathe again.

A funny thing happened when the restraining order was lifted. David Bear was no longer the little kid but instead five inches taller than the adult who threatened to kill him three-years earlier. Although he’s a much more confident healthy boy today than he was three-years ago, he has managed to maintain his loving manner. We still fear for his safety due to his trusting nature, but we can see how much fear has prevented him from reaching his social potential.

I’m back to share our story with the world. I am no longer afraid. It is not my intent to give anyone false hope or to imply that this has been an easy process. I do not want anyone to believe that David is “whole”. I’m sure his doctors can label his specific medical condition and I’m sure it’s a type of autism, but that doesn’t matter much to us. David is David, David Bear. No more, no less. He is a happy, thriving, loving, loved boy. That has to be enough for the world. It’s enough for us.

Days Like Today

People look at my tall, handsome happy son and just don’t believe me when I say he was preterm or that he has any lasting effects. Those closest to him, whether in proximity or just in heart, prefer to think of him today and gloss over his yesterday. But then I have days like today which remind me of how far we have left on our journey. Today was our first day back at lessons after a week off.

Me: David, go and practice signing your name.
David (ten minutes later): I forgot how to write my name.
Me: Do you remember how to spell your name?
David: Of course I do! It’s R-O-Z-I-E-R.
Me: Spell “Eugene”.
David: Why can’t I just use my initial?
(dirty look)
David: E-U- … I forgot Mama.

This is what happens when we allow him to go one week without writing his name. Now I’m pretty sure that I would have to go months, perhaps years, without writing before I forget how to write my name, but with him, it’s just a few days. We know that, yet still we let him take a week off for Spring Break. We used to give him two weeks off, but the forgetting was so overwhelming, we decided against it this year. It only took him an hour to sign his name ten times.

Since today was his first day back so we made it “Art Day”. The instructions were for him to see the picture in his mind and then draw what he envisions. I know most 1st-graders can do better, but this is GREAT WORK FOR DAVID BEAR. Here is his art.



















This is my absolute favorite -- his version of our family:


I asked him why he drew himself and his Daddy so neatly but the picture of me was (in my view) rather spastic and he said:

"Because you are always moving"

Just another day around here.

BREATHE

My nephew has asthma. That scares me. He suffers massive attacks and has been hospitalized several times for his asthma. He’s an otherwise healthy, active boy who despite the asthma, recently just earned his Black Belt in Tae Kwon Do. Still, I worry about his breathing problems. David Bear on the other hand, does not have asthma. He has RESPIRATORY DISTRESS SYNDROME, or RDS. Most people have never heard of RDS so we usually just say, “Yeah, he has asthma.”

Respiratory distress syndrome is one of the most common lung disorders in premature infants and causes increasing difficulty in breathing. Respiratory distress syndrome affects 10% of all premature infants and only rarely affects those born at full-term. The disease is caused by a lack of lung surfactant, a chemical that normally appears in mature lungs. Surfactant keeps the air sacs from collapsing and allows them to inflate with air more easily. In respiratory distress syndrome, the air sacs collapse and prevent the child from breathing properly. Symptoms usually appear shortly after birth and become progressively more severe.

(From U.S. National Institute of Health)

The lungs are the very last organ to develop in vitro. Lung tissues mature just prior to birth, usually at week 34. David Bear was born during week 25. David Bear has never had an asthma attack, but he is always in respiratory distress. I didn’t smoke while I was pregnant, nor did I allow anyone to smoke in my presence, but my son was born too early for his lungs to develop which really ticks me off. I know so many smokers who have given birth to healthy children that I think it’s just unfair that my child has respiratory distress syndrome.


Breathe. I tell myself that. Life isn’t fair. Life is life. We need oxygen to live. Breathing supplies over 99% of your entire oxygen supply. We choose to teach our son to live rather than be mad at life. David Bear spent the first three months of his life on oxygen, but when he came home, he was breathing room air. After his second hospitalization in less than a month, they sent him home on oxygen. We had huge oxygen tanks in his bedroom, smaller oxygen tanks around the house and portable oxygen tanks for short trips. Back then all of our trips were short – 2 hours or less, the amount of oxygen in a portable tank. (Reminds me of the Disney store I will have to post later today.) I tried to see a lifetime of him dragging around oxygen tanks, but my vision doesn’t work like that.

Breathe. Track, swimming, karate, yoga – those are the sports and activities I’ve always participated in, but David Sr. is the real jock -- college football, karate, champion pole vaulter and hurdler, deep sea diving, outdoorsman. We couldn’t accept that our son would not be able to do any of the things we enjoyed. We can accept that he won’t do them all, but any? That was too much to bear, so we taught him how to breathe.

Yes, we taught him how to breathe. People don’t realize that most children can be taught anything. Breathing is natural for almost everyone because the options are pretty limited, breathe or die. Oxygen tanks are great and they clearly saved our son’s life, but we did not believe that he was meant to be oxygen dependent. We instead subscribed to the belief that he did not know how to breathe. He’s brain damaged, remember. To us, that signifies that the path from his brain to his lungs was not yet fully formed so we implemented a very simple breathing program.

Verbal cues
- Telling him to breathe several times per day.
- Breathe in. Breathe out.
- Breathe in. Hold it. Breathe out.

Physical cues
- Holding him close while I took deep breaths so he could get my breathing rhythm
- Placing a hand on his stomach and telling him to take deep breaths until he could move my hand.
- Placing a hand on his lower back and telling him to take deep breaths until I could feel his breath on my hand.

Environmental changes:
- Eliminating all carpeting from the home.
- Switching to low toxic products
- Properly ventilating our home
- Giving him plenty of outside time

Breathe in. David was off oxygen shortly after his 2nd birthday. There were times the first few years when I felt he needed it, especially during illnesses, but that’s a-whole-nother column on caring for sick babies when they become ill. There were times when I wish I’d kept a bottle or two around just for me, but mostly we don’t miss the oxygen. Breathe out.

Breathe in. I’m so grateful that he doesn’t remember and that he doesn’t have physical scars from the tape. Our mental scars are still fresh so I tell him to breathe. He swims and does karate. He plays with other boys on occasion; one day WE will be strong enough to allow him to play every day. We are happy. Breathe out.



When was the last time you stopped your child from what they were doing to make them breathe? Children who can’t breathe don’t have much of a chance for life. Breathe.

"Reading by 5" vs. "Reading by 9"

Children can’t read what they can’t see. Simpler words have rarely been spoken, but this truism is so often overlooked that it bears mentioning. I remember the stories about my oldest brother, how they thought he was “slow” up until 2nd grade when they finally discovered that he was legally blind. How frustrating that must be for a child to not know that everyone can see what you can’t.

I never realized what that meant (and not just because I made the previous sentence as convoluted as I thought I could get away with!). For years David Bear and I would go out on our balcony and I would remark how lovely the mountains looked and David Bear would agree with me. The morning after his “miraculous” sight recovery, we were standing on the balcony and he was quite quiet. After a long moment, he quietly said:

“So that is what a mountain looks like.”

Wow. Years later I am still moved to tears remembering that morning.

Children can’t read what they can’t see. We wanted David to know how to read, but let’s face it – I’m far too lazy and self-centered to learn Braille. When David was born, we lived just a few blocks from the local Blind Institute in Anaheim, so it would have been logistically quite simple for me to take him around the corner to learn Braille. However, being the selfish person that I am, all I could think about was the dozens (closer to a hundred) books that his father and I had from our childhood that we wanted to share with him, and buying them all in Braille just didn’t seem like an option at the time. So we had to find another way.

Life's battles don't always go
To the stronger or faster man;
But sooner or later the man who wins
Is the man who thinks he can.
(excerpted from “The Man Who Thinks He Can””Walter D. Wintle

We found our way in the Institute for Achievement of Human Potential program. I just can’t say enough good things about them because we got such great results from them. When we first started the program, we created flash cards which were 12-inch squares, each card with one word written in bold 4-inch red thick letters. We did our best to make sure he could see the words, because ... children can’t read what they can’t see, so .

We started with five words per day, and we would hold the card and say the word five times per day, always changing the order of the words. As he began to recognize words, we would introduce new words or groups of words, such as “TRUCK” and “RED” would become “RED TRUCK”.

He really liked trucks back then. As he started moving away from words to phrases, we changed the shapes of the card so they were now 6-inches high by 18-inches wide. Materials can be purchased at any art or office supply store, and we turned the card creation process into his art time, killing two birds with one stone, so to speak.

We mainly purchased books with super-large print. THERE IS NO EXCUSE TO WRITE A CHILD’S BOOK WITH SMALL PRINT. None whatsoever. We thought we were doing a great job until someone challenged us to do more. David did not speak until after he was two (another story for another day), and a friend’s mother commented that we did not read to him enough. I was thoroughly insulted. At first I thought she was making a racist remark (because her husband was a jerk) but after I allowed my own negative thoughts to give way to her message, I understood that she was not insulting me, but rather challenging us. In her view, we needed to read David no less than five (5) books per day to encourage him to speak. At the time we were reading him two (2)-to-three (3) books per day, which is well over the “minimum” standard of one book per day, or so we thought.

I have no idea why this worked, but he was talking in less than a month. Moreover, he was reading by 5. The best part – we had an excuse to hold our son a few extra times per day. Does it get any better than that?

Children can’t read what they can’t see, and children can learn whatever they are taught in a loving pleasing manner. If you think your child can, and then show them how, they will learn. Be patient with your child and yourself, but don’t forget to enjoy the ride.


*Note: At a friend's suggestion, we are considering sending him to the School for the Blind so he can become more independent. Considering, but not quite sold on the idea.

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.