Fighting Cystic Fibrosis – An Interview With Courtnie — 5 Minutes for Special Needs

Fighting Cystic Fibrosis – An Interview With Courtnie

by Deborah



                               

Courtnie describes herself as young, but her wisdom and strength say otherwise. Please join me in welcoming this incredible Mom and her lovely family!

Tell me a little about yourself and your family.

My name is Courtnie and I am a young stay at home mom. Dh and I have been married for just over 3 years and we have a wonderful 17 month old. I am also 4 months pregnant with a little girl who we can’t wait to see! We live in the Chicagoland area and are active in our local church.

Tell me more about child’s disabilities.

Cystic Fibrosis is a hereditary disease affecting the exocrine (mucus)
glands of the lungs, liver, pancreas, and intestines, causing progressive disability due to multisystem failure. Thick mucus production results in frequent lung infections. Diminished secretion of pancreatic enzymes is the main cause of poor growth, greasy stools, and deficiency in fat-soluble vitamins.

There is no cure for CF, and most individuals with cystic fibrosis die young: many in their 20s and 30s from lung failure. However, with the continuous introduction of many new treatments, the life expectancy of a person with CF is increasing to ages as high as 40 or 50. Lung transplantation is often necessary as CF worsens.

Did you know when your child was born that he had disabilities?

When Luke was born we thought that he was a perfectly healthy baby. The
only sign that there was a problem was his lack of weight gain and his constant tummy pain that would keep him (and us) up all night long. We didn’t realize how sick he was until he caught RSV and hospitalized 3 times over the next month for respiratory distress.

It seemed odd because there was another little kid who had RSV at the same time and he recovered in less than a week. They finally did a blood test for CF because I said I wouldn’t leave the hospital without them running it. We found out is was positive on February 12th 2007 and he was hospitalized again Feb 14th for more CF complications.

If not, how did you feel when you discovered it?

When they dr walked in the room and told us the test was positive it felt like someone tackled me. I was somewhat prepared because of my mother’s intuition but it didn’t seem real until she told us we had to find a specialist and soon. We weren’t very educated on it and so when they told us I thought that he was going to be VERY sick for the rest of his life. I also thought that this would mean no more children. Obviously, as we have talked to others with multiple children with CF and also after meeting Luke’s CF specialists we have changed our minds on quite a few issues, including the amount of children.

You blog a lot about your child’s issues. How did you go about making the decision to blog?

I originally starting blogging because my sisters blogged and I felt left out. After Luke’s DX though it took on a new meaning. My blog became my place to vent and get my thoughts out without the fear of being judged. I felt that I had to put up a facade when I told people about Luke and his condition that my blog became a great place for me to “unload” and get the stress out of my system.

What do you personally get out of blogging about Luke and his issues?

I get a place to vent without fear of judgement. I know that the people who read my blog honestly want the best for us and are pulling for Luke. It means so much to me to have their support. I am also trying to raise awareness of Cystic Fibrosis.

How have Luke’s disabilities affected you as a person and as a mother?

I know that Luke doesn’t have the normal life expectancy and that every day is special. I enjoy cuddling with him because I know that he may never cuddle his own children (most CF males are infertile). I have learned how much I rely on my husband too! He is so amazing and helps me out so much. I couldn’t imagine doing this without him. I have also learned to trust in God better through all of this. I know that He holds the future so I just let him take control 🙂

What did you do right?

I was Luke’s advocate and pushed for CF testing and then for immediate care. I educated myself very well as soon as he was diagnosed and asked many questions. I remember the dr’s asking if I had questions and then I would whip out 3 pages full of questions. It’s never bad to be informed.

What do you wish you had done differently?

I wish that I had pushed for testing to be done sooner and I wish that I hadn’t denied the CF carrier test. Those are in the past though and I try not to think about it because I can’t change it.

What do you want other parents to know?

That just when you think that you can’t take any more, you can. You will always get through the trial you are going through and you somehow always have the strength. Also, the attitude that you have will be represented in your child. I am hoping that Luke will take my husband and my attitude of hope that we have about CF. We believe that there will be a cure in his lifetime and we want him to believe that too!

Is there anything else you would like to share?

I have found that finding others and networking with others that are in similar situations helps so much! Get on Twitter (you can find me @musicalmom) or Facebook or Yahoo Groups and find people like you. Blogs are such a great resource for finding people too! Other parents have so much insight and can help you with the little tips that make life easier.

Make sure to stop by and visit with Courtnie and her lovely family at her blog, Fighting Cystic Fibrosis One Day At A Time!

Deborah can be found writing here at 5MFSN every Sunday and Wednesday, and can also be found at Pipecleaner Dreams.

Email Author    |    Website About Deborah

In addition to her job as a computer engineer and her single parent responsibilities, Deborah is president of a state-wide family support group for families whose lives are touched by deafblindness, and is a tireless advocate for all people with disabilities. She writes at Pipe Cleaner Dreams and her writing has also been featured in local magazines and newspapers. Ashley’s story has also been chronicled in a book by Jonathan Mooney titled Short Bus Stories.

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1 Heidi February 22, 2009 at 1:21 pm

Mother’s intuition is very strong, isn’t it! Thanks very much for sharing!

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