Friday, June 4, 2010

The Wonder Of It All

Have you ever looked at a child only to find yourself staring in awe and amazement at the wonder of it all. I look at my three kids and am simply astounded that we did something so very right, my wife and I. The infinite smiles, the high-pitched laughter, the innocent and untampered views of life through their eyes, the heartfelt hugs--the list is endless as to the joys and delights they bring to our lives.

Even during my son's illness, when he spent several years on chemotherapy, I was awed at the resilience and beautiful spirit of not only him, but of my two young girls, his sisters, who also bravely walked the path of his illness with us. With heads held up, I might add. They wanted matching mediports so that their brother would not feel isolated with the "bumpy" on his chest. Pure and magical love.

As much as a setback as his illness was for our family, though, we survived that life trial and, in fact, emerged so much more stronger and appreciative of the offerings of this life. We were taught life-lessons that some people never learn. We reaped the benefits of compassion, both receiving and giving in ample, unselfish amounts. The small shit took a back seat to the more important "stuff" that life had to offer.

One of our amazing ER nurses, Kathy, the mother of a son with cystic fibrosis, said it best when Cole was first diagnosed. "Welcome to the 'Parents-Of-A-Sick-Child Club'," she whispered in my ear while hugging me. "It's a club that no parent would ever want to belong to," she continued, "but one that will change your life forever." No wiser words were said to me during that period of my life. Several times, I have reminded Kathy, who continues to struggle daily with her son's life, that the snapshot of her hug and her words will linger forever with me.

Mostly, I am thankful that my son's illness was a temporary, albeit two long years, and not a permanent fixture in our lives. We know we have been blessed. That our family is one of the lucky ones.

In the ER, when I meet the parents of an ill child, especially a prolonged, chronic illness, my utmost respect and compassion flows outward in tidal waves. I can only imagine the heartbreak and the struggles they have known in dealing with the fight for their child's life, trying to obtain just a wee bit of normalcy. Struggles that may never cease, that may continue to ebb away at the glimmers of hope and happiness that are too infrequent in their lives. Struggles that weigh down the shoulders and plummet the heart, time and time again.

A few years back, during the middle of a night shift, I walked into Room 22 to see CeCe, an unfortunate five-year old child born with microcephaly, a neurologic developmental disorder. There is a disturbance in the rapid growing of nerve cells, which results in a variety of symptoms, including striking neurological defects (such as mental retardation, severe intellectual and developmental delays, and seizures), a deformed, dwarfed body, and a shortened life span. Treatment for this illness is symptomatic and supportive. There is no cure.

As I walked into the room, diminutive CeCe was lying on her back in her treatment cot, her mother bent over her, stroking her braided and beaded hair while whispering into her ear. Her father stood along the other cot's side, stroking CeCe's hand. She was, despite her age, about the size of a two-year old toddler. She was nonverbal, and all four of her extremities were contracted and spastic. Her head, as expected, was quite small. It was a heartbreakingly, beautiful scene. CeCe was obviously loved.

CeCe had been brought in by her parents because her "trach" had fallen out in the middle of the night. She was in no respiratory distress, but it had been placed a year prior in the event she would develop any breathing difficulties. Her parents wanted to replace it themselves, but under a controlled environment ("just in case something goes wrong when we put it back in"). In essence, our medical team was just going to hang out and watch CeCe closely, on monitor and clinically, to make sure that everything went as planned.

After meeting the parents and saying a few words to CeCe, who had no response, I assured the parents that we were ready for them to replace the trach. "Who's going to do it?" I asked.

"I will," CeCe's father said, turning the new trach over in his hands, examining it closely.

"Are you sure you don't want me to do it or call in an ENT specialist?" I asked, feeling a little of his nervousness. "It's no problem for us, really," I assured him.

"No, but thank you. I would rather replace it in case it hurts my little girl."

Before starting, Mom crossed herself while Dad bent over to whisper his assurances to CeCe in her ear. "I don't mean to hurt you, baby," he said. CeCe had no response.

"I'm ready, honey," CeCe's mother said to her father, giving the go-ahead. Slowly, he bent over CeCe's throat, inserting the tip of the curved, plastic tubing of the trach into the small open hole of her anterior neck. It didn't go far, though. He was meeting some resistance.

"Are you okay?" I asked, watching CeCe closely through this. I had noticed CeCe squirming as he struggled with the resistance. "I think so," he replied, adding a little more strength to his attempts.

And then it happened. A small miracle of sorts. As Mom was bent over, whispering love to her daughter while Dad struggled to place the new trach, a sudden, brief smile passed over CeCe's face. I had seen it. I know I did.

With a little more effort, Dad finally was able to insert the trach to his liking. We secured its placement before obtaining a CXR to make sure it was placed appropriately and that we didn't collapse a lung or disrupt the trachea's integrity.

All turned out well. CeCe remained very stable, her vital signs normal and her clinical exam unchanged. The CXR confirmed a job well-done by Dad.

"I have to say," I told CeCe's parents before discharge, "that you have one lucky little girl. The way you both approach her, whispering in her ear and caressing her, is quite beautiful. Your love for her is very evident." I looked at the nurse, who nodded her agreement. "In fact," I added, looking at Mom, "I think I saw CeCe smile when you were talking to her."

"She did?" Mom asked, before continuing. "I live for those moments."

"Does she do it often?" I asked, wanting to hear more.

"Not often enough," Dad spoke, "maybe every few days at the most. We wish CeCe smiled more but, honestly, we'll take what we can get."

They were packing up, getting ready to leave, but I had one more question that I needed answered. "CeCe's hair," I asked both of them, "who braided it and put all those beads in?" Her hair was a sight to behold--numerous, small, loose braids that were delicately woven and tied with multi-colored beads at each end. Not an easy feat, I'm sure. "Oh, that," CeCe's mother said, blushing slightly, "I did that a few days back. I love doing it, actually. And CeCe seems to enjoy when I do it. In fact, her most recent smile was when I was tying those braids."

I pictured Mom at home, sitting behind CeCe, propping her up into her own lap, fluffy pillows surrounding them, and lovingly, with the utmost tenderness, combing out and braiding each little twine of hair, before beading its end.

Waiting for a glimpse of CeCe's brief smile. Living for it, actually.

Meeting CeCe and her parents reminded me of just how lucky a man I am.

If you are the parent of a chronically-ill child, I dedicate this post to you. Don't forget, for one minute even, that there are many of us out there who see you, who send you our prayers and good energy, and who recognize the love and effort you give to your child. Despite your struggles, at some point in your life journey, the reasons you were blessed with your child will become evident to you and will hopefully enrich your life and the lives of those around you. If they haven't already, that is.

The wonder of it all...

As always, big thanks for reading. I hope your weekend is a great one. Next post will be Monday, June 7. See you then...


WrightStuff said...

Sometimes when I read your posts Doc I cry. This was one such occasion. It's not just the story, but your writing too and the strength of your compassion that comes over. I read in your posts that you meet 'all sorts' and many of them you probably wish you hadn't. But people and stories like this must reach out to you in a way that not many other professions would ever see. Your posts help open up the world of the doctor to us. Thank you for continuing to share.

Laanykidsmom said...

This is becoming my new favorite blog. I agree with the previous commenter about your writing and strength of compassion. As a mother of one daughter with a heart defect (2 surgeries and counting) and another daughter recently diagnosed with epilepsy, I appreciate this post. Our struggles are not as draining as Cece's parents, but nonetheless, managing our daughters' health has given me many anxious days, and I appreciate your post tremendously.

Chrysalis Angel said...

As always, so well said, StorytellERdoc.

Many of us do pray silently for the journey they are on, and they will never know. When they think they are just passing by someone, they are silently being blessed.

Anonymous said...

Extra beautiful. And heart breaking. And inspiring...

SteveC said...


I was born with a heart defect, and now I advocate for Heart Defect Survivors. And I see this every day in my own parents and Heart Parents everywhere.

Heart Parents are the first people to realize that a heart defect doesn't just affect one heart, it affects their, too.

Excellent post!

Adventures of a Funky Heart!

rlbates said...

Dr Jim, thank you for "seeing" the smiles in tragedies.

Stephany said...

Geez Dr. Jim, just when I was wearing the badge of "hey I haven't cried yet today", I read this, and tears dripped off my face. Pass the tissues!

Kate said...

Even though you never want someone to live through that kind of pain, look what deep level of compassion it gives you as a caregiver. You are a special one, my friend.

Karen said...

It is amazing what life's trials teach us; what good things can come of hearbreak. This is a beautiful post.

2divasandawife said...

Wow, amazing post! I am a parent to two children who were born with health issues. Our youngest has congenital heart defects. It's a blessing to have been given the chance to parent a special child. Your post was so touching. Thank you.

Katie said...

Personally, the braids broke my heart and put a smile on my face. Kaitlyn--my friend with Lyme Disease and a plethora of other co-infections--has very long blond hair. All of her senses are so hypersensitive to the point where she could still feel the doctor gripping her wrist to take her pulse two days later. Through her journey, Kaitlyn's hair became tangled and cutting it off was not an option. Instead, her father (a 6'6" big-build man) spent three days in a dark clinic room picking out the knots, one strand at a time. That's love. The same love shown here by both of CeCe's parents. A love I wish didn't require a serious illness to be expressed.

<>< Katie

Heather said...

this post is, well... astonishing. my son has Hypoplastic Left Heart Syndrome, a pacemaker, and numerous other issues. those parents... yeah. that's it, right there. you live for those little moments. like when my son just runs up to me (literally runs; i don't think he knows he only has half a heart!) and throws his scrawny, FTT-ish arms around me and squeals, "i love you, momma!!" thank-you for seeing the beauty in our lives... because really, as much as it sucks and no one wants a life like this, i wouldn't trade it for the world. thank-you. <3

Anonymous said...

This was an amazing, beautifully wrtiten post. I cant imagine going through something so profound like that. I hope that when I have children, that I never have to go through something like that. If I do though, I also wish that I can be as graceful, and compassionate as you, and CeCe's family were. This was a very touching post, and brought tears to my eyes. Excuse me while I go reapply my mascara, Lol. Good writing as usual Jim!!

Anonymous said...

As a young adult with a few chronic health issues now trying to get and give myself as good and kind care as my parents did when I was younger I can tell you that - finding a doctor who understands what it's like to be or at least love and live with a family member who has a chronic disease is priceless. ...especially in an emergency room!

Thank you for expressing your understanding perspective and sharing it with so many others. :)

Anonymous said...

Did I say "be... a chronic disease?!"

...I meant HAVE.

Again, my deepest thanks for your sharing and understanding.

911RN said...

"Welcome to the 'Parents-Of-A-Sick-Child Club'," she whispered in my ear while hugging me. "It's a club that no parent would ever want to belong to,"

I, too, am one of those parents. My child suffers from a rare neurological condition....Landau Kleffner Syndrome (LKS). Our stuggle has continued for 6 years. He is making gains and hopefully, he will outgrow it in puberty. He is 10 and I am the only mother in the county that can't wait for their child to become a teenager:)

He is not "sick" and will not die from this and for that I am fortunate.I count my blessings.But it has presented many other challenges within our family/school and for him. I share many moments like Cece's parents where "I take what I can get." I continue to be his biggest fan and strongest advocate. He is such a sweet, special, resilient child.

Beautiful, compassionate post and you DO GET IT due to your experience with your son.We don't sweat the small stuff, either.We are a stronger family because of his LKS, as well.

This one brought me to tears- thanks for understanding! Not everyone does.Actually, the majority do not- have to have lived it and "been there" to get it...thanks for seeing and recognizing us in your daily work.

NatJMo said...

I'm a ER and a family doctor in Quebec, Canada and I've been reading you for a few weeks. This post was beautiful!

You have such a way to describe life in the ER. I do laugh a lot and sometimes I cry when I read your blog.

Our job is particular and we are privileged to have the confidence of patients who entrust us with all kinds of problems.

God thank you, I have two children in good health although I do live with a chronic disease (Cystic fibrosis). I appreciate each day life gives me.

If only people could think of Cece's around them, they would surely appreciate their life much better then the way they do.

Sorry for the bad english, I'm a french speaking person.


Heather said...

I want to hug you.

Also, are you OK? Saw the tornadoes were coming...was worried.

Also, thank you.

--Welcome to the Club. ;)

SeaSpray said...

Such a beautifully written heartfelt post ... you're an amazing writer.

My heart goes out to families with ill children and the children. These parents are an inspiration.

Your patients are so blessed to have you for their physician. And I know you must feel the same after encountering some of your patients.

Leslie said...

Dang, Dr. Jim, you need to put a "kleenex" warning on your posts! I couldn't even finish this one...I'm reading this in a public area...I don't want an audience to my blubbering. :)

HealthyLife said...

Nice story about health care for the children. Good job...

HealthyLife said...

Nice story about health care for the children. Good job...