Saturday, August 3, 2013

What cystic fibrosis has taught our family.

I have been thinking about this post for many months. I haven't been quite sure how to word it. However I've decided to quit mulling it over and just type from the heart. This is the result...keep in mind that we know we are not perfect superheroes, despite the picture below.

We are not in charge; God is. Remember that saying let go and let God? Yeah well, we only thought we were good at that until our first child Elena  was born. Then we realized we had a lot to learn. I felt like I aged 10 years the day of her birth. Not just in years but in knowledge and wisdom about life.

The Letter E is pretty cool for the obvious reasons like our children Elena, Ethan,  Emily,  and Everett. Or for ridiculously long Eyelashes. But also For Enzymes. Without them Elena  would not gain weight. Her tummy would constantly hurt.

Celebrate the little moments often.  Because you never know when things might change in your life permanently. This goes for everyone.

CF can change Elena's health in a heartbeat.  She can be healthy and playing one hour and in the next hour be admitted into the hospital. This is not a result of anyone failing to do the right thing. This is just life with cystic fibrosis.

Cystic fibrosis is an expensive disease to care for and treat. However, we would rather go without than have Elena  not get the medicine she needs. This is why it is important to support the Reaching Out foundation. This organization helps people that are struggling financially so their children will never go without meds. Elena's fundraising running team , rosebuds, supports that foundation as well as the CF foundation. She would love to have your support on this adventure!

Always assume the best when it comes to your family and friends' intentions, however when it comes to Elena's  health you can go ahead and assume the worst because it may be a reality. This may sound pessimistic but it also can save  Elena's life.

Laugh, and do it often! It helps take your mind off the reality of how very difficult your child's life is and will be with CF.  Find the positives in the bad. Go ahead, be a Pollyanna!

Pray and do it many many times during the day. Pray for the things you're thankful for, pray for the doctors and nurses and the researchers. Pray for your family and friends. Pray for the Siblings of those with CF, pray for the CF fundraising organizations, Pray for clarity on the toughest days, pray for peace when you're scared,  pray for a cure.

You must be organized and I mean really organized at all times. Juggling treatments, Meds, doctor visits, tests, homeschool, all know what I'm talking about. Everyone has their schedules and hassles to juggle. Your house may not look like the Container store or IKEA, or you may not sync calendars with your spouse yet, but strive to get there. Having things organized and clutter free helps make your brain feel clear. At least it works for us.

Others will not truly understand unless they have a child with CF. So, you don't want other people to understand ...ever... And you are sad when they do bc now they will have their own list of what cf has taught them.

Don't judge. You really don't know what people are going through. I have had so many people approach us and tell us that what we were feeding our daughter is unhealthy. I have had people approach me and tell me I was giving my daughter too many pills. Since the birth of Elena,  our family has had a different outlook on so many things. However, the one thing I have embraced is not passing judgment on anyone. This goes hand-in-hand with always assuming the best in people. What might look to you like a parent that doesn't care about their child's misbehavior could actually be a parent trying to help their child who is autistic.  What appears to be a quiet unfriendly person is actually someone who was just diagnosed with cancer. Don't judge but consistently show love. 

Surround yourself with friends that don't judge. They will be your life line when times are tough. These friends will understand when you can't call them all the time. These friends will understand when there's weeks of silence between the two of you.  These friends will understand when you have to cancel a visit at the last minute because of sickness.  These friends understand your good intentions even when the weight of cystic fibrosis has worn you down. These friends will always be there for you and you for them. Your energy is precious and should be reserved for your family and friends that love you, not wasted on trying to explain yourself. Show those that judge you love by taking the time to be courteous, but move on. 

Keep your home and your heart open to new friends. You never know what new and exciting people you are going to meet. I have met so many wonderful people within the cystic fibrosis support community. So many of them are friends for life.

Show respect to your parents and your grandparents. You are who you are because of them. The good and the bad times have made you who you are.  Be thankful for that and show them your appreciation as often as you see them.  Life is too short to hold grudges.  Replace the grudges with lots of grins!

Family, Family, them, love them, support them because they need you as much as you need them.

The flu, viruses, RSV, asthma attacks, none of these seem like a real big deal anymore when we're dealing with the non CF kids health. CF put things into perspective. Yes, These things could be scary, but nothing gets to you anymore. Other health concerns don't seem nearly as big a deal as they would if we didn't deal with CF daily.

Cystic fibrosis does not define our family, but it has helped us grow, learn, and love with a ferociousness that we are most thankful for.
You already learned these things due to your own life circumstances? Super- fantastic! Build your list! Look at where you are and look back at where you came from. What a road it is to get there! Now look around you. Are you surrounded by family and friends that support you? Go give them hugs or send them notes and tell them you are super thankful for them. Tell them how outstanding they are.  Squeeze your kids right now. Tell your spouse/ significant other how amazing they are and how much you appreciate their support and love. 

I wish I could say that I have mastered the lessons listed above, but I'm a work in progress. I'm sure I'll think of more lessons  later, but that's because we will continue to learn and grow. Thank goodness for that! Until then, we will continue to fight CF for Elena and our friends with CF.
Ready , set....FIGHT!

What have I learned? I love my family and  I love my friends just the way they are. I love my life just the way it is. Thank you cystic fibrosis.


  1. So well said! Love to you and your family!

    1. Thank you Isle! Hoping we meet up sometime.:) We will work it out.:):)

  2. Thank you so much. You communicated many thoughts and feelings I have as a mom of children with cf.
    Praying for your family...

    1. Thank you! It's always nice to feel connected with other CF families when we are told to stay apart


Want to see what my family is up to?