Lessons Learned Through Parenting and CF

Guest Blog By Jeannine Ricci

Back in 2001, when I became a mother, resources on parenting
with CF were practically nonexistent. Thanks to all of the
research advancements, it’s so exciting to now see more and
more people with CF exploring the possibility of parenthood.
Because this topic is becoming more prevalent, I thought it might
be a good time to resurrect an article that I wrote 5 years ago. It
discusses my experience with talking with my children about CF
and the possibility of a shortened life expectancy. Hopefully it will
help other parents as they face this challenging subject.
At the end of the article, I give an update on my daughters
and how their experience with my CF continues to impact their
lives.

***Lessons Learned- Parenting with CF***

My CF has shaped my children’s lives for as long as they can
remember. As toddlers, they developed patience. After many
temper tantrums, they eventually learned that I had to finish my
treatments before we embarked on our day’s adventures. As
preschoolers they learned empathy. They would run to get me
tissues and water if I was having a coughing fit. Their teachers
would comment on the level of empathy they showed their
classmates and how unusual it was at such a young age. During
their school years, they are learning to become more
independent. Just last week, my older daughter surprised me by
making their lunches and helping her sister with her homework
because she knew I was not feeling well.

Since CF had been woven into their everyday lives, I took their
comfort level with my CF for granted. They knew that CF meant
coughing, treatments, and IVs. What they did not know was that
it is a life-threatening disease. I regret having not broached this
subject with them as soon as I felt they were mature enough to
handle this information. Last year my daughter’s teacher called
to tell me that he was concerned about her. She was not herself
at school. She was very distracted and seemed depressed. I
knew immediately what was bothering her. I was on IVs because
of an especially difficult exacerbation. The side effects of the
antibiotics left me on the couch most of the day. It was the
sickest she had ever seen me. We had a long discussion after the
phone call and she opened up to me and told me how she had
read something at the CF walk that stated that the life
expectancy of someone with CF was 37 years old. I was 40. It
truly broke my heart to know that I was not there to answer her
questions and ease her fears when she read this critical piece of
information. She deserved to hear this from me. As I spoke to
her, I tried to give her realistic but hopeful answers. I told her
that I wanted nothing more than to watch her and her sister
grow up and that I hoped to be there for her college graduation,
her wedding, and the birth of her children. I explained that there
are so many new medicines being discovered that would help to
make this a possibility, but I also told her that there are no
guarantees, and that is why I try so hard to keep myself as
healthy as possible.

Just as my children have always incorporated important life
lessons from my illness into their lives, I believe that this
discussion will only further strengthen their character. It will
teach them the value of treating every day as a gift. I hope my
experience encourages other parents with CF to be prepared to
have this pivotal discussion with their children. No matter how
difficult it may seem, it will be worth the peace of mind knowing
that you will be the one delivering this information, ready to help
them cope with their fears.

Here are some guidelines from Lisa C. Greene, a mom of two
children with CF and co-author with Foster Cline, M.D. of the book
Parenting Children with Health Issues (www.PCWHI.com)

• Pivotal parenting moments can take us by surprise, so be
prepared ahead of time. Our answers should be honest, calm,
matter-of-fact, and hopeful. We shouldn’t use terms like “fatal”
or “life-shortening” nor should we make empty promises. Use
terms like “healthier” rather than “healthy,” “more likely to live a
long time” rather than “will live a long time.”

• We need to try our best not to let our own fears and worries
show, both in our words and in our body language. Children pick
up on (and tend to mirror) their parents’ emotional cues,
especially when they are young. If you are having trouble
controlling your own emotions about these tough issues,
counseling might be helpful.

• At some point, we do need to address the issue of life
expectancy. Hopefully, this will be clarified by around the age of
eight (around 3rd grade) depending on the maturity of your
child. One way to address this issue is to ask your child questions
to open up dialogue. Some examples are:
“How much do you know about CF?”
“How are you handling it?”
“Is there anything about CF that worries you?”

With a little awareness and preparation, you can make talking
about these difficult issues a positive experience. Relationships
can grow closer when people go through tough times together.

Update: 5 Years Later
It’s no surprise that this disease has continued to shape my
daughters’ lives over the past 5 years. There’s no denying that my CF, anxiety, and depression have caused many hardships for my family. And it’s
difficult not get swallowed up in the guilt of knowing that there
are times that I’m not able to be the mom that I desire to be, the
mom that they deserve. During these times, I try my best to
focus on the positive ways CF has touched their lives.

The attributes of fortitude and courage were fostered as they
watched my battle with CF progression as it inched its way closer
and closer to the center of my life–our lives–demanding more
attention. And then, in November of 2014, they witnessed hope
being transformed into tangible reality as I swallowed my first
dose of Kalydeco. This new reality has allowed them to more
confidently envision me by their sides in the distant future. They
have embraced this gift with a deep sense of gratitude that can
only be felt when someone has experienced the threat of the
unbearable alternative.

They have watched as this same gratitude has fueled my desire
to help others who are still waiting for their miracle. At the young
ages of 15 and 17, they possess a keen understanding of the
intrinsic value in every life, and that the amount of money in
someone’s bank account or what type of insurance they have
should not be dictating access to these life-saving medications.

They have learned the importance of taking action and
advocating for others, even if your voice is seemingly
overpowered by others. They have both participated in the Cystic
Fibrosis Foundation’s Teen Advocacy Days in Washington D.C.
the last few years, meeting with members of Congress and
stressing the importance of ensuring adequate healthcare
coverage for all. They recognize the gifts both given and received when you touch a person’s life indelibly and both of my daughters have expressed an interest in pursuing a career in the healthcare field. 

I’m so proud of them as I watch them develop into
compassionate, strong, young women, inspired to make their
mark on this world; a mark that undoubtedly would not be so
deep and impactful if it wasn’t for the valuable life lessons they
have gleaned from having someone they love with CF.

The Cystic Fibrosis Reproductive & Sexual Health Collaborative (CFReSHC)

Women with CF, we need your expertise and opinions!

Become a member of the CF-Patient Task Force to discuss sexual and reproductive health issues that affect women with CF.  As patients with CF live longer, CFReSHC is committed to patient-engaged research through partnerships with people with CF, researchers, and advocates.  Continue reading The Cystic Fibrosis Reproductive & Sexual Health Collaborative (CFReSHC)

We want to hear from you! CF Roundtable article submission deadline soon

CF Roundtable Article submissions are due December 15th.

The Focus Topic for the Winter 2018 issue is “Becoming A Parent With CF”.  If you – our adult readers with CF – have thought about becoming a parent, what decisions and considerations did you make? Are you a parent or do you help raise a nephew, niece or another child relative? Whether you already have children or want to start a family, tell us about your journey to parenthood.

Continue reading We want to hear from you! CF Roundtable article submission deadline soon

CF Podcast 173: Becoming a Parent and Overcoming Infertility with Cystic Fibrosis

In this podcast, we meet Chris Kvam, cystic fibrosis patient, husband, and father. Diagnosed at 4 years old, Chris was told he was infertile, very abruptly, when switching over to his adult cystic fibrosis clinic. Because of the delivery and lack of open conversation about the topic, to this day, he feels that the news was the Continue reading CF Podcast 173: Becoming a Parent and Overcoming Infertility with Cystic Fibrosis

New on CFF.org: Family Planning

NEW ON CFF.ORG: FAMILY PLANNING & PARENTING WITH CF
As people with cystic fibrosis are living longer, healthier lives, many are considering having families of their own.

To help people in the CF community make informed family planning decisions, Continue reading New on CFF.org: Family Planning

Childless in the Age of Social Media

By Amy Braid

As I have mentioned before I have two step kids.  Neither of which I knew as babies.  I was brought in when they were well past their diaper and nap time stages (phew).  But having step children and having children of your own are two entirely different things.  I love them both and I am so blessed to have them in my life.  They have allowed me to be a mom when I thought that would never happen.

But not having babies in this world of social media is difficult.  Each day you are bombarded with picture after picture of babies, kids, pregnancy announcements, etc.  And no matter how excited you are for the person, you still feel that tug at your heart.  You see your friend who is pregnant again announcing it with fun pictures and reveals – happiness and some jealousy.  You see the family photo of your parent’s friend and their kids with their spouses and kids – a little bit of envy.  You see the friend who struggled for years to get pregnant finally have her baby – pure happiness because you know the desire to have a baby of your own, and only a twinge of jealousy that she got it and you didn’t.

I think back to the days when my parents were expecting my brother and I.  Friends didn’t post their news on the web.  They didn’t have cute little reveals or parties to announce the pregnancy or the gender.  You didn’t see photo after photo of the kids doing everything from the first bath to the first grade throughout your day.  It was much easier (or so I think it may have been) to kind of ignore all the baby hoopla.  You dealt with it when the baby shower invitation came or the birth announcement.  Holiday parties and block parties you could see the kids, or running into them at the mall.  Maybe a birthday invitation here and there, but only for the first couple of years since you had no children of your own (I think that is pretty consistent in this era too).  Avoidance was much easier.

But on the flip side, the social media bombardment can also be a blessing.  You CAN SEE all the stages from the first bath to first grade.  You can revel in the happiness of it, even if you can’t experience it with your own children.  You get to watch the children grow up and become young adults right before your eyes.  You can see all the moments that you would have missed otherwise and will never get with your own children.  Instead of only having one or two babies you now have a classroom full.  Each friend’s child is like your own.  And while it may bring some envy and jealousy to your heart, deep down you know that this is almost as good as having your own child, and it comes with out the stresses of parenting and raising kids…or dirty diapers!

(Step)Parenting with CF

By Amy Braid

When I was younger I always dreamed of having a family.  Dinner would be on the table every night even though I worked full time.  My husband would help the kids with homework and projects after working all day too.  We would be the “perfect” American family.  Just like all those 50s and 60s TV shows that we loved and grew up with.

Then I grew up…My family didn’t form the way I envisioned it would.  I married a man with two kids.  I inherited them and all that comes with them – minus bio-mom drama.  I was thrown into the mix when they were 7 and 13.  Now they are 14 and 20.  The 20 year old has never lived with us full time, only weekends.  The 14 year old lives with us full time and calls me mom.  Long story and nothing I can share here, sorry folks.  Anyway, being the parent of a teen is rough, being the parent of a teen who is not yours is rough, maybe even more so?  I struggle every day with decisions.  Are these the right ones to make?  Am I only making this choice because I didn’t give birth to her? Would these little things not bother me if she was my blood?  Will I ever feel like she is “mine?”

Like I said, the stress of dealing with a teen is massive, but stress is horrible on the body.  And then there is the whole getting into a groove and wham hospital time!  Two weeks to screw up your well-oiled almost functioning great machine of a household.  It really does complicate things!  You have a great schedule down, things are running smooth.  Projects are getting done, homework is completed, and grades are decent.  Then the cold hits, probably brought home from school.  It travels to your chest and the next thing you know it is time for some IV antibiotics and a two week stay in your local club med.  Sure you get waited on hand and foot, and there is no laundry or dishes to be done.  You can watch TV all day and not feel like you should be doing chores.  It is almost like a mini vacation. Almost.

Every day you are still checking on homework via texts.  Asking if there are projects that need to be done.  Or coordinating extracurricular activities.  Or making sure that going out with friends on the weekends doesn’t mean that no homework and studying gets done.  Making sure chores are still being completed and allowances are still being paid.  Because though your husband is capable of doing all this, he isn’t used to it.  You are the “homework hounder” and without you things tend to get forgotten.

So that little mini vacation is no more.  You are now worrying about what you are missing at home and if things are going to be a mess when you get out.  That well-oiled machine is starting to stick and make noises.  And once you get back out and start oiling it again, it takes a few weeks if not longer to almost be back to normal.  Until the next time you need to go away.