courtesy of teddybearsforhope.org
It’s December, 2006, and H is just weeks from his second birthday. Despite the negative swirl around the Little Einstein videos, I’ve picked its familiar Caterpillar logo for his birthday cake and invitations. I have the video’s puppets in the back seat of my car and am plotting the script for a puppet show to entertain our eventual guests.
H is sitting on my lap, and his pediatrician is listening to his lungs through the cold echo of her stethoscope. “You’ve given him the full dose of steroids?” she asks.
“Yes. And breathing treatments every few hours. This is the fifth asthma attack this winter. I just don’t know what we’re doing wrong.”
She rolls back a few inches in her swivel chair and watches me for a moment. Then she takes a deep breath and says, “What do you know about Cystic Fibrosis?”
I blink. “I’m sorry?”
“Please don’t be afraid. I think we need to screen H as quickly as we can.”
Suddenly, everything she says is louder. So much louder. It’s almost like I can’t understand what she’s saying. I bundle my wide-eyed baby in his winter coat, curse her silently, and walk out the door.
~*~
Two weeks later, GB and I have swathed H in three layers of clothing, wrestled him into a hat and gloves and scarf, and coaxed him to run for 30 minutes along the open corridors at Nationwide Children’s Hospital. The purpose is to make him sweat as much as possible so the lab technicians can measure the sodium levels in his perspiration. One other couple is urging their tiny, smiley, tow-headed son through the same screening process. He and H find each other and play heartily as we adults look at one another in desperation.
And then, the technicians take both boys by the hand. We’re left to sit in plastic chairs for 45 minutes, staring at a room filled with distraught but friendly faces. We strike up a conversation with the other couple. They’re good people, but their son’s symptoms are enough to make me excuse myself under the guise of tracking down a water fountain so I can breathe and pull myself together.
When the hospital calls a week later with the screening results, I’m balled up on the couch with H. I clutch the receiver before answering, and exhale shakily when I hear he is in the clear. No Cystic Fibrosis. Just acute asthma. And while I’m dialing GB to give him the joyous news, I’m crying, thinking about the other family. Because what if their news today was different from ours. In my head, I break off a piece of my heart and send it to the boy’s mother, willing it to morph into some semblance of hope.
~*~
We’ve spent a lot of time at Nationwide Children’s Hospital. Two asthmatic kids means lots of late-night runs over icy streets to what has become a bit of a refuge. There, they have a staff of top-notch doctors and nurses who know a hell of a lot more than how to cover a boo boo and send you home. On my last visit with O, when he wailed all night in his hospital room and pulled the plastic breathing fork out of his nose over and over, a male nurse wiped his tears and smoothed his hair while I forced the latest Albuterol treatment. And then later, a hospital volunteer arrived with a bag full of goodies for our family: a stuffed bear O still treasures today, plus snacks, bottled water, and a notebook and pen for taking doctors’ notes. Even if I knew dozens of different languages, I could never have expressed my gratitude for such comforting acts of kindness.
~*~
GB is on the Development Board at Nationwide Children’s Hospital. This year, he’s the chair for the Give a Little, Grow a Lot campaign, a grass-roots online effort to raise money for the admitting gift cart, which doles out care packages (like the one I described above) for every child admitted to the hospital. If you’re looking for charitable opportunities this holiday season, or if you’re looking for a decent tax write-off, this program may be a good one to consider. No obligations, of course. I’m just happy to talk up a program I really believe in. What good is a blog if you can’t shine a light on a good cause every now and then?
For more information about Give a Little, Grow a Lot, visit http://bit.ly/f80ypu.
Have a safe and very happy Thanksgiving.
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Maura, I had no idea your boys had such a rough time with asthma. That must be terrifying to watch them struggle to breathe and then go through treatment at the hospital. God bless you. Truly. Flu season is hard on everyone, but it must be sooooo much tougher and scarier when you know how hard a respiratory infection could hit your little guys.
Your description of the words of the doctor — and your reaction — were so perfect. I had a flashback to the first time I heard the “A-word” in the pediatrician’s office. The way you described everything getting louder and you suddenly couldn’t understand — I know exactly what you mean.
Thinking of you guys and praying for a winter of perfect health …
Thanks, Amanda. Actually, we’ve seen a lot of progress for H–his asthma doesn’t bother him nearly as much as it used to. And O only has trouble when he catches a cold. They take meds every day to help us control their symptoms–I’m hoping one day they’ll grow out of it altogether.
I’m sorry you could relate to the loud doctor effect. I had a feeling you would be able to. It’s strange, isn’t it? Didn’t it take everything you had to keep from testing out your left hook? Our doctor was so direct, and showed little to no sympathy. I hope your doctor showed more compassion. And I hope Billy has awesome doctors now.
Ah, Maura, much love and strength to you … it sounds like your boys get exactly the care they need at the hospital. Along with your incredibly warm and loving mother heart …
The care package initiative sounds fabulous – as you’ve experienced – and I hope they get the support they deserve.
Big hugs to you from chilly London xx
Thanks so much, Sunshine. The Development Board hosts several different, larger events each year to raise money for other aspects of care within the hospital, but Give a Little, Grow a Lot is GB’s pet project, just because we’ve been on the receiving end of it, and it made such a difference in calming and comforting our little guys.
Thanks so much for the kind thoughts.
Maura, thank you for sharing your story. Your boys are so fortunate to have the parents they do. I can tell you bring delight and fun into their lives. It brought back the memories for me of sitting in a little room with MRI images all around me as the neurologist told me over the phone that my oldest son has MS. The room got smaller the more we talked until I felt as though I couldn’t breath anymore.
There is nothing more comforting than the kind care of the professionals at a great hospital. Blessing to you and your family, Jeanne
Jeanne, I’m so sorry. I cannot believe that conversation happened for you by telephone. Shame on that physician for treating the news of your son’s diagnosis so callously.
How is your son now? I know MS research continues to make great strides. I hope he is in good health, and is enjoying a happy and active life.
Hi Maura:
I’m so happy your news for your little guy was good! Jim and Devin are both asthmatic, but Jim’s symptoms have diminished over time.
I used to work with a woman whose three grandchildren all have CF (her daughter-in-law was already pregnant with the third child when the older ones were diagnosed). There is a young teenage girl in our city who just received a double lung transplant last year due to CF. She seems to be doing very well.
I’m sure the Children’s Hospital appreciates you using your blog to promote their campaign!
Hugs,
Wendy
Poor Jim and Devin. This time of year is tough for the Asthma set. I hope your guys are healthy and well.
Thanks for your note about the girl who received a double lung transplant last year. Medical research is such an incredible thing, isn’t it? A friend of mine e-mailed me today after reading this post and told me that her cousin, who has Cystic Fibrosis, is now 38, married with children, and working in law enforcement. He leads a full and happy life. That’s progress you never would have heard about 30 years ago.
Happy, easy breathing to your guys!
That sounds like a wonderful cause, Maura. Thanks for sharing your story.
It’s so heartbreaking when your kids are sick. We’ve also had some instances of finding out “Is it this or is it that?” And, thankfully, it has always been the less serious of the probable causes. You can’t help thinking about all of those familes who get the news you are praying desperately to avoid.
Wishing you a healthy holiday season~
I’m so happy to hear your kids have ended up on the more positive side of a diagnosis. Those weeks and weeks of waiting are just torture, aren’t they? When we received our good news, my prayers for H’s health were immediately redirected toward the other families who were waiting for a similar call. I think that’s when GB and I both knew how badly we wanted to get involved in making the process easier.
Hope your babies are happy and well!
That’s a really scary story, but I think it’s great that you guys have gotten involved and are helping other families. That’s just wonderful. God bless.
Thanks, Todd Pack. I tell you, we’re lucky to have a hospital like this almost in our back yard. I hear Vandy has a nice children’s hospital too.
What a scary story! I have asthma (but don’t have any children) so I can only imagine how scary it must be to watch your child struggle.
Give a Little, Grow a Little sounds wonderful!
Do your doctors think there’s any chance you’ll grow out of your asthma? My mother did for a while, but in the past five years, it has kind of sneaked its way back into her life.
Here’s to happy breathing!
I’m so glad your story had a happy ending Maura and I do hope the other family had one to! It’s wonderful that you’re helping affected children
I felt that scary ‘amplification’, when a neurologist told us that my brother had Muscular Dystrophy and would not live to see his 10th birthday. He was 7 then and I was 19. He wasn’t very compassionate about it either. I’m so happy you feel like the hospital and it’s staff are a refuge. It certainly takes a load off!
Hugs, H.
I’m so sorry, Harsha. I’ll never understand why doctors sometimes put an expiration date on a patient’s diagnosis. I know your brother lived for years after his 10th birthday. I’m so glad he was able to prove science wrong.
Oh, Maura — so scary! You’re such a wonderful mama. I hope your boys are having a better day today.
Thanks, Ms. Shannon.
They’re feeling happy and healthy today!
Hi Maura,
Thanks for sharing your story. Yeah, I know that moment when the doctor’s words get louder. For me, like Amanda, it happened first when the “A-word” was tossed out . But then four years later, as I stood in the pediatrician’s office clutching my 2 week old daughter while the nurses scrambled for an “emergency” cardiologist appt (she has a small hole in her heart, but nothing had been diagnosed at that point), I swear I did wanna test that left hook! Our doctor was actually very compassionate, but still I think there comes a point when someone says, “Are you okay? Did you hear me?” that a mommy’s fight-or-flight instinct must kick in.
I do hope you & your guys have a healthy, safe & happy winter! Thanks also for sharing the link, I’ll pass it around.
All best wishes,
Cathy
I’m sorry, Cathy. That’s hard news on both counts. I think the toughest part must be that waiting period–and even the first few months after a diagnosis: that desperate feeling that you just don’t know what’s coming at you. That’s so scary.
But now, when you look back at those early days, isn’t it amazing how far you’ve come, and that you’ve managed to handle it? We don’t know what stores of strength we have until we’re asked to test them out. Sending you thoughts of continued strength! And you know…no one says you can’t keep that left hook in your pocket in case you ever need it.
Blessings to you and your family!
Thank heaven you didn’t get the CF diagnosis.
I have one son who outgrew his asthma when he became a teenager. I hope your sons do the same.