Monday, March 21, 2011

Don't Quit

When things go wrong, as they sometimes will,
When the road you're trudging seems all uphill,
When the funds are low and the debts are high,
And you want to smile, but you have to sigh,
When care is pressing you down a bit,
Rest, if you must, but don't you quit.

Since his birth 15.5 weeks prematurely, the doctors have told us all the things David would never be able to do:
- Never going to walk.
- Never going to talk.
- Never going to speak.
- Probably blind.

We didn’t believe them. Our parents raised us to believe that “can’t” was not an option. There is “won’t”, “shouldn’t”, and “didn’t”, but we can do whatever we set our minds to do, provided we seek the right counsel and heed their advice. We didn’t listen to those who told us what David would not be able to do and instead actively sought out those who believed that all things were possible.

I will share in later posting the tools we used, but we did rely heavily on the Institute for the Achievement of Human Potential ( IAHP is an incredible organization with consistent incredible results. The results we achieved for our son following their at-home program speak for themselves:

Age 1 David can talk and walk.
Age 2 David is fully potty trained.
Age 3 David can dress himself.
Age 4 David eats solid foods.
Age 5 David can read.
Age 6 David can ride a bike.
Age 7 David can see, without glasses.

Life is queer with its twists and turns,
As every one of us sometimes learns,
And many a failure turns about,
When he might have won had he stuck it out;
Don't give up though the pace seems slow--
You may succeed with another blow.

Between 7 and 10, David’s development has accelerated. But then, life, in its queer way, threw us a curve ball. What started out as a routine physical resulted in us seeing several specialists and Bear having two shunt surgeries. We had to see the endocrinologist because they were concerned with his rapid growth. We had to see the urologist because his testicles weren't behaving properly. (He's fine, and yes, his father was more concerned with the problems with the testicles than he was about the possibility of tumors on the glands. Men!) There was the orthopedist because of his misshapen legs (which are barely noticeable). The problem with seeing these doctors is that his regular doctors (pediatrician, pulmonary and ophthalmologist) all insisted on seeing David as well to ensure that the specialists weren't mucking something up, which of course made his dentist feel left out. We ended up seeing nine (9) doctors several times each during the month of November.

After all the tests came back, the doctors agreed that he needed to be first hospitalized for a sleep study, then his shunt tube needed to be replaced, and after he recovered, he needed to be hospitalized for an asthma study. As luck would have it, he was admitted to the hospital right before Christmas.

The sleep study was inconsequential and his surgery was quite routine, but his recovery was far from routine. The most frustrating part of his recovery was the treatment we received at his hospital. The first few days after the surgery he was quite fine. We even went to the mall where he ran around in his Santa costume pretending to be Santa. (That's another story for another day.) Three days after his surgery, he woke up screaming and holding his head. That liked to scared the life out of his father and me.

The surgery he has required that they remove a shunt tube that ran from the top of his brain where the shunt is located into his stomach, where the fluid is supposed to drain. Rejection of the tube and shunt failure is so common that we were forced to learn the symptoms. If only they had bothered to teach the ER personnel.

Trip 1 to the ER: David Jr is in extreme pain. When he tries to lie down, he screams. He has a very high threshold for pain, so I can only imagine how much pain he is in. The ER doctor decides to X-ray his skull to ensure that the tube is still in place. Since the tube is in place, they send him home with prescription strength pain relievers.

Trip 2 to the ER: Two days later and David is still in excruciating pain. We no longer allow him to lie down, instead propping him up on pillows. This reminds us of his first years. When he had a cold we kept him elevated in his car seat so he could breathe. Poor baby. This time we point out to the doctor that David’s stomach is distended. The rather rude doctor dismisses me and then send David for another set of head x-rays. These x–rays come back normal, so the ER doctor concludes that David has the flu. David Sr. argues with the doctor and they actually call security on us. They send him home with cold medicine.

After spending two nights watching him around the clock and waking him up every twenty minutes just to make sure he is alright, we decide to take him back to the attending brain surgeon. David’s surgeon went on vacation two days after the surgery (and before the complications set in), but his partner was familiar enough with Bear’s case that we decided to bring what would become the third brain surgeon to cut on our child, into the picture. At this point, David was too weak to walk and for the first time in his life, had to be pushed around in a wheelchair. To this day I am haunted by seeing his limp body in that chair. It's that constant reminder of "what could have been."

Trip 3 to the ER: The attending surgeon examines David and sends him to the ER 14 miles away at Hoag Hospital, the place of Bear’s birth. We drive David to Hoag and the attending ER doctors examines our entire child, performs an x-ray of his head and stomach, and determines that the shunt tube was wrapped around his intestines and that all of his brain fluid was dumping directly into his cavity. I have no idea what it means, but I understood when he said “We need to correct this right away or he will die.”

He was surprised that David hadn’t slipped into a coma but when I explained how we woke him up every twenty minutes, he praised us.

At this point I have to stop and thank my sister Jea. Many many years ago when I knocked myself unconscious she was really mean to me and wouldn’t let me sleep for days. Every time I tried to sleep, she forced me to walk around claiming that if I fell asleep, I would die. I didn’t believe her, but she is bigger and older than I (and rather crazy in a scary big sister sort of way) so what could I do. When we were waking up David, I was channeling my Big Sis.

Back to the story. The ER doctor then admitted him to Hoag and had him transferred back to Children’s Hospital for the surgery. At this point it was quite late in the evening and the hospital gave us the choice of surgery right away or first thing in the morning.

Often the goal is nearer than,
It seems to a faint and faltering man,
Often the struggler has given up,
When he might have captured the victor's cup,
And he learned too late when the night slipped down,
How close he was to the golden crown.

Right or wrong, we decided to let the doctor get a good night’s rest before operating on our child. We spent one more night in the hospital waking him up every twenty minutes, but given the choice between us being tired or the surgeon being tired while operating, I think we made the right choice.

In the end, Bear recovered nicely. We are still upset with the Hospital for missing the coiled shunt tube the first two occasions. Had it not been for our persistence, David would not have survived. We’re not bitter though. We are that much more vigilant about trusting our instincts and refusing to accept rejection because of the ordeal.

Success is failure turned inside out--
The silver tint of the clouds of doubt,
And you never can tell how close you are,
It may be near when it seems so far,
So stick to the fight when you're hardest hit--
It's when things seem worst that you must not quit.


  1. thank you for sharing the journey with me. once again you have reminded me that my lot in life is what i make it.

  2. You are welcome. The only thing we really can control are our thoughts, so it's up to each of us to "think we can".

  3. outstanding!!!heartwarming.