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.

Be Who You Are

David was born with a beautiful head of curly hair, which his fabulous neurosurgeon shaved when he placed the shunt to manage his hydrocephalus. The shunt left a nasty scar on the top of his head, and you could see the tube running through his head and down his neck.



David has hydrocephalus, a condition in which excess cerebrospinal fluid (CSF) builds up within the ventricles (fluid-containing cavities) of the brain and may increase pressure within the head. Although hydrocephalus is often described as "water on the brain," the "water" is actually CSF, a clear fluid surrounding the brain and spinal cord. CSF has three crucial functions: 1) it acts as a "shock absorber" for the brain and spinal cord; 2) it acts as a vehicle for delivering nutrients to the brain and removing waste; and 3) it flows between the cranium and spine to regulate changes in pressure within the brain.

When the neurosurgeon informed us of the likelihood of shunt failure and multiple shunt surgeries, we decided that we would let his hair grow between surgeries and let Dr. Malkasian cut it when he did the surgeries. Based on the information we gathered about shunt failure, we never expected it to grow so long.


As luck would have it, by the time David needed to have his tube replaced, advances in medicine were such that the doctors only needed to shave parts of his hair. Good thing too. Combing his hair usually results in me threatening to cut his hair, but he really loves his hair.

Funny thing is, he doesn't think he has a shunt. He doesn't believe us when we tell him about his brain surgeries or injuries. He doesn't believe us when we tell him that his hair is a cushion. He just thinks he is cool. That is who he is.



We got really lucky with this. I was wise enough to reject the first doctor they brought in to do the shunt surgery (excellent w/ adults, no experience w/ preemies) but that alone doesn't account for the shunt not failing. We were lucky. We still count it as a win. Why look a gift horse in the mouth?