Strawberries with Everything
Poignant lessons from 16 days in the hospital.
I have just emerged from spending 16 days in the hospital with my nine-year-old daughter. I learned a lot of lessons about life, medicine, giving and receiving. I would like to share these lessons because they are eternally valuable and were acquired at great expense.
The night before the biggest event of the year for my organization was spent in the emergency room admitting my daughter with a severe infection that could have spread to her eyes and brain. Instead of the usual rest and intense preparation the day before I meet 1,000 of my most important supporters and students, I was comforting my child at 2 a.m. as we entered the hospital room that would be our residence for the next 16 days.
After much discomfort, she fell asleep at 3:30 a.m., now hooked up to a continuous IV line and having her vitals signs checked on an hourly basis. I slept, or rather tried to sleep, next to her in my street clothes, not prepared for the journey I was now embarking upon.
I felt free, and to this day have not quite snapped back into my old uptight, competitive self.
After working for two dogged months on the event, I decided to forgo my attendance and let my staff run the whole affair. Who cared anyway? I needed to focus on my daughter and her well being. Nothing else mattered. If this is the way the Almighty wanted it to go, who was I to say differently? I felt relieved and redefined as a professional. I felt free, and to this day have not quite snapped back into my old uptight, competitive self. Was there really anything more important than my family's well being?
(In the end my wife stayed at the hospital till late in the night with our daughter and sent me to the event, because here in LA the show must go on.)
My daughter's discomfort was apparent. The nurse, Teresa, was so kind, gentle and caring. Out of nowhere she brought my daughter a Barbie Doll in an unopened box in the wee hours of the morning.
My daughter was stunned. A present! What for? This is a hospital, not a birthday party. As a middle child in a large family, you can sometimes fall through the cracks. Not much unclaimed manna falls your way. Here was a present to die for, from ex nihilo. She held the box and stopped crying, falling into a deep sleep which hourly examinations could not arouse.
My daughter had to undergo orbital eye surgery to remove a dangerous and growing accumulation of pus. Thank God, the surgery went well, and it took her two weeks to recover from the infection. She was released under heavy medication to fight the remainder of the infection, along with an inconvenient schedule of follow-up blood-work, x-rays, and doctor appointments.
Here are some of the key lessons I learned.
Giving a scared child a present in a hospital can do a lot of good. In our case, phone calls, balloons, flowers and gifts began filling her room. It was no longer a cold, aseptic hospital room, but a long-running birthday party.
My daughter came to anticipate what would be the day's gift-wrapped present and from whom. She got so much attention from her friends and siblings, from our friends, and from the nurses that it soothed any love deprivation she might feel as a "middle child."
Come for 5 minutes, drop off a toy, and say, "We miss you."
Visiting a child in the hospital and bringing a gift or dressing up the room does a lot in terms of healing them. They feel good and special. Don't be afraid to come for 5 minutes, drop off a toy, show how it works, and say, "We miss you." You don't have to hang around. Just come around.
Remember: A child needs to be watched in a hospital setting. The medical staff means well, but no one knows your family member better than you. Someone has to be there making sure the medical care is appropriate and correct. The patient also heals faster with familiar and caring people in their midst.
But who has time to be at the hospital 24/7?
My wife and I did. We blew off our lives except for the most important few obligations and let everything else go.
By the last days of her hospitalization, we caught on to the idea of having people to come watch our child when we just could not be there. When people said, "Whatever we can do to help..." we told them, "Here's when we can't be at the hospital. Can you please visit her?"
2) Giving and Receiving
When families are in trauma, people come out of the woodwork to help, especially those with a highly organized network of community connections. People want to do something. So here's the lesson: Let them! Because we need to feed our family, but who has time to shop and cook in the middle of a crisis?
It was a powerful breakthrough for me and my wife to say, "We will take from you; we appreciate your giving." For years we gave and never asked to receive. Sometimes it is harder to say, "I need your help." It was like a new muscle being flexed. We opened up and let the kindness in, and said thank you with all our might.
It felt good to be able to give others the opportunity to "give back." Sometimes, to receive is to give.
We don't live in small Midwestern towns, and the web's "virtual communities" just don't cut.
It's so important to attach yourself to a community of people who care. Besides offering frequent opportunities to give to others, it is also a matter of practicality when you need help. We don't live in small Midwestern towns or European villages any more. And the web's "virtual communities" just don't cut it in most situations. You need someone to have lunch ready when your kid gets home from school, someone to remember which day is garbage day, and someone to just listen to you groan after a 15-hour shift at the hospital. "It takes a village" is not just for poor people.
Now here's the lesson for givers: Direct assignments are more helpful than vague offers. When you want to help someone in crisis, don't say, "Call me if you need me." A distressed family or person isn't going to remember your offer. And if they do, chances are they won't act upon it; it's too uncomfortable to call and ask.
Instead just say, "I am making you a meal. Would you prefer dinner tonight or tomorrow night?" Or, "I'm going to the grocery store today. I'll call you back in an hour to get your shopping list." Or, "I want to help you in the hospital -- when do you need a break?"
3) Second Opinion
This can be pretty daunting. Many communities have organizations that will help you deal with a medical crisis from many angles. The greatest benefit for us was their help in obtaining reputable, alternative opinions quickly. In LA, one such organization is Bikur Cholim (literally: visiting the sick). They also provided us with a portable DVD player, volunteers to baby sit, and assistance in strategizing on several crucial medical decisions. You can't do it alone.
My wife and I also actively searched for outside opinions. One such doctor, a true hero who specializes in what ailed my daughter (and lives on the next block from us), came in the third night to examine my daughter. He pinpointed the problem immediately. The nurses were treating the pain, but he saw the deeper underlying cause. I'm confident that the primary care doctor would have caught it by the time he made his rounds the following morning. But instead, we had a 10-hour head start by contacting the doctor that night (not without a fight from the nursing staff) at midnight to arrange for 8 a.m. emergency surgery.
Getting a second opinion gives you more background information and confidence in understanding the issues. Don't let the medical staff intimidate you. Nurses and doctors have leeway, but tact and diplomacy must be used. Nurses are great reservoirs of information and, as I quickly learned, love getting huge boxes of chocolate at the nursing station as a show of appreciation.
4) Physical Comforts
The food was terrible (no surprise there) and I brought in whatever my daughter wanted. "If you could have anything to eat, what would it be?" I asked her.
"Strawberries," she replied without hesitation.
"What do you want to eat with the strawberries?" I asked.
"Strawberries with everything," she said with an ear-to-ear smile.
Her wish was my command, and there was an endless supply of strawberries to fulfill her dietary whim. Later on, sushi ran a close second.
Use the patient's physical desires to their advantage. Food can be a very powerful drug. We also added DVD-viewing as a reward, and I even paid her $23 dollars in rewards for taking medicines, drinking prescribed amounts of water, and for good behavior. Even a hospital stay can have its advantages.
Our first big breakthrough in recovery started two days after the eye operation, which was five days into the ordeal. My daughter was listless and was spacing out in bed. It was Saturday morning.
"Enough of this bed and IV chaining you down," I said. I put a dress over her hospital pajamas, socks on her feet, placed her in a chair and we had breakfast together.
Then we went for a walk up and down the ward with the IV in tow. I gave her some cleaning chores to do as well. [If we didn't constantly keep the hospital room organized, it would have overwhelmed us with garbage, laundry and presents.] Slowly she began to fill with life. By the end of the day she was beginning to bounce off the walls and the sparkle returned to her eyes.
I owe it to getting her moving and staying out of bed for 12 hours at a stretch. I eliminated naps and avoided all "couch potato" mentality. Just because she was ill and not attending school didn't mean she couldn't have responsibilities and activity.
When you're carrying a piano up a staircase, who has time to focus on the negative?
Add normalcy -- not just to the patient's life, but to your own life as well. My wife and I tried to drive carpool and stay on top of the household and work as best we could, even though we were constantly barraged with communication from the medical staff, our children, our parents, our friends, and all the outside medical advisors. I thought my cell phone was going to melt from so much usage.
I kept up my daily routine, at least to a minimum, and tried to live a normal life. It helped my wife and I keep sane. Otherwise you can detach from the familiar, and despair and self-pity will devour you. When you are depressed, as Rabbi Noah Weinberg of Aish HaTorah says, move furniture. When you're carrying a piano up a staircase, who has time to focus on the negative?
Our Sages teach that unless we use life's traumas, pressures, challenges and crises to grow, they become a curse instead of the blessing they are meant to be.
For those who understand there is a God directing our lives, we need to recognize when we are being given a crisis in order to grow. The Jewish definition of a crisis is not being able to identify and access, as of yet, the tools that God embedded in me to deal with the situation at hand. We must use such moments to become more than we are.
Put a reminder on the refrigerator, not to forget the lessons learned.
And once the challenge has passed, we cannot snap back to our old self. Put a reminder on the refrigerator, to look at every day and say, "Oh yeah, I had this life-changing experience and I don't want to forget the lessons I learned and the growth I achieved."
The Almighty orchestrates the most perfect designer situation for each of us. Learn to go with it rather than fight it, and understand how we can become better from it. Maybe that will speed up the situation's resolution.
We taught this to our children, and added that now is the time to come together as a family and to support one other. We all grew closer as a result.
I am a different person because of my daughter's experience. And so is everyone around us. Now I know how to offer help when someone is physically in trouble. I'm not afraid and do not run away from their problem.
I also feel that I discovered humanity again. I was inspired by people of all backgrounds and stripes trying to heal my daughter, both medically and emotionally. I bonded with many people over the shared goal of getting my daughter out of the hospital in the quickest, most painless way possible.
As my daughter walked out of the ward upon her release, she returned the Barbie Doll to the nurses' station, still unopened. She left the nurse, Teresa, who was on duty that first horrific night, a note of thanks, with instructions to give the Barbie Doll to the next little girl who was in distress. She did not need it anymore.