Sunday, November 15, 2009

A Mother's Manual for Cystic Fibrosis

Before I was diagnosed, nobody knew what was going on. I didn’t show typical symptoms of CF. I had a rash from head to toe, was very cranky, and due to an inability to keep food down, dropped close to my birth weight. I went to different doctors, all of which had different opinions. One doctor blamed my “failure to thrive” on my mother’s breast milk, another thought it was allergies. At six months of age, after months of guess and check, I was taken to University Medical Center in Tucson, Arizona at the behest of my military doctors. There I was diagnosed with Cystic Fibrosis. Legend goes that I tested positive several times for the disease, but the doctors hesitated to believe the results due to my a-typical symptoms. My case was actually written up in a medical journal because of my unique manifestations of the illness at a very young age. And so the journey began.

Once I was diagnosed, my mother was frightened and confused. She had never heard of CF and with a life expectancy of 20, the outlook was grim. In 1980, the year of my birth, about 4% of people born with CF died in their first year. Being told that you will outlive your child is something that any parent would dread hearing. Doctors didn't stop there however. The list of "certainties" my mother was told only went on: “Your baby isn’t in perfect health”. “Don’t expect a normal life for your child”. “Your child isn’t like other children.” “There’s a good chance your son won’t live long enough to graduate from high school”. “Your son will have limitations on what he wants to do with his life”. “Consider yourself blessed if he sees his twenties”. I often think back to that time (by putting myself in my mother’s shoes) and feel extreme sadness for what my mom must have been going through. Here she was a 24-year-old woman, with a husband who was constantly away on military duty and obligations, with a sick child and information that didn’t paint a pretty picture.

Motherhood, for most, is a time filled with joy and excitement. But what about the few mothers who are faced with the unexpected? The potentially devastating? Some women were created to face these challenges, I'm lucky enough to call one of those women Mom.

I thank God everyday for my mom. My mom was the perfect woman to be put into this “dire” situation. There was no way in the world she was going to let me be a statistic. We were, together, going to face this disease head on. She has been the best teammate a (sick)boy could ask for. I had CF; CF wasn't going to have me. Our attitude, our efforts, and our determination would directly effect my quality of life. Want to know where my outlook on CF came from? Her name is Christine. She has never, ever, let me view CF as a crutch or curse. She never treated me differently because of CF. Is there a manual on how to raise a child with CF? No, but my mom sure should write one. She threw out all of the "certainties" doctors burdened her with, but allowed one piece of advice to mold her mindset. He said, “Listen, Ronnie has a physical disability, but you don’t have to make him mentally disabled as well.” With that, my mom decided to do what I feel she was born to do, just be a mother.


12 people had something to say...:

Graciy said...

I love your Mom! Having a full grown husband with CF confussing is at times and that was after his mother trained me from her own personal hand book. I am so giving you a gold star for this post!

Graciy said...

thanks! he likes the vest better from what I can tell. either way he fights me at times to do it. more so by hand

Jason Addink said...

Awwwwww. "Crazy" Aunt Christine is the best! See you at Easter!

Gail Frazier said...

I think your mom and I have a lot in common! I would never let CF define my 8 year old son Trevor! I have two other sons without CF and barring the treatments that Trevor has to take, he is not treated any differently. We keep him very active in sports. He loves basketball and baseball! I don't ever want him to look at CF as something that is going to hold him back, but as a great challenge in his life.

3 CF FIGHTERS said...

Hi Ronny!
I loved this post. I'm writing a book for other moms that have children effected by Cystic Fibrosis, I would love to hear more from you, your a very talented writer!

elisaNchris said...

thank you. reading that.. i understand a little better now :D

Nikki said...

I love your Mom also! Having a 10 mth old with CF is sometimes very trying, but I will not allow her to be treated any different than the children without CF...

Dori said...

Ronnie, I would never let my son seen this way either. That's why I fight for everything for him to be normal and not feel like he's different. He does everything the other kids do. He just knows he has to do treatments and take meds. He's pretty grown up for being 4!

Robin Johnson said...

This was very nice to hear. I've been reading your posts and it sounds like you have a great perspective with cf and life in general! :) I am a brand new mom little Jack is 10 weeks old :) and he was diagnosed with cf through amnio when i was 14 weeks pregnant. Like your mother I had never heard of cystic fibrosis. But Jack has a great cf team and we (his dad and I) have become very educated on the medical side of cf. What we don't recieve is personal experiences with cf, so finding your blogs have been a blessing :) If there are any new moms who read this I would love to gain insight on your personal experiences with your child and cf or just what I might expect. Thank you so much!
P.S. Your mom sounds wonderfull and I hope she does write a book I would definitely read it!!!

Sherry said...

I don't have CF, I have RRP (HPV in my lungs), but I get great inspiration from your blog. I am the oldest person I know w/ this extent of disease, and I believe it is because I ran for 20 years. I'm hoping to start running again soon, after I get my Tracheostomy on 1/11. Thanks for the inspiration!

Sherrie Bellerose said...

Sounds like your mom and I have a lot in common! Becky wasn't diagnosed until almost 4 years old and I can't imagine why. She has classic digestive issues associated with CF. So needless to say, she was pretty much a mess and near liver failure. You could say my determination and stubbornness along with treatments and tons of medication has turned her around 180 degrees. She's now doing so "well" health wise. We keep her active and always do her treatments and then "special" treatments to keep her lungs open. We also do not allow CF do define who she is. You're very lucky Ronnie to have your mom!

paulawalkerbaker said...

Oh my gosh! your mom and i must have been twins by different mothers!I got the same news when Micah was 9 weeks old, the same "he's not living long" and at a year old, "we didn't think he was going to live to be 1."It was very difficult to get past the initial news and I actually ended up in the hospital for major depression.
I had actually spent a year or more working out what kind of funeral i would have for him.
He has never let cf define him, he's the kid in school other people wanted to be because he was so cool. He would come home and complain that friend's wore their hair like him, dressed like him and that they just needed to be themselves.
It is hard to watch your kid when they are sick- true of any mother, true of any kid.

You are a sweet, special young man whom Micah and I enjoyed meeting and your mom is wonderfully special herself. God always knows best!!!

paula baker