Monday, April 18, 2011

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.

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.

Wednesday, April 13, 2011


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.

Monday, April 11, 2011

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.

Thursday, April 7, 2011


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.