Saturday, August 3, 2019


As you transition to adulthood and take on the role of managing cystic fibrosis yourself, it can be quite overwhelming. Making, planning and arranging all sorts of Dr. visits, clinic visits, pharmacy orders, medication deliveries/pick ups, daily cleaning and sterilization of all your equipment, amongst all the other things that naturally occur when we turn 18. The phrase, "it takes a village to raise a child" is true, but we like to add our own twist...."it takes a village to raise a child, but it takes an army to raise a child with CF." 

I grew up with an incredibly strong support system and then at 25, married a man, a very 'hands on' man. One who helps around the house, in our relationship, and in raising our son. This plays a very important role in experiencing success, despite a terminal illness. Management of the disease, mental and emotional support, having someone to help you fight when you are down...can literally be the difference between life and death. Strong support systems are vital.

If you do not experience a strong support system right not fear. 
You can create one! The success associated with support, is not only seen in disease management, but everyday life. 

Today I will be sharing a few tips on 'How to create a support system':

1. Be brave! 
Open up and educate your friends, neighbors, church congregation, aunts and uncles about your disease process (or whatever you may be dealing with). When people understand what you have on your plate, you will be surprised how many people are willing share this burden. They will want to help make life easier for you.

2. Be a good friend to others. 
Be invested in others lives and willing to show up for them too. 'Like attracts like', the law of attraction is real. Do what you can for others when you have 'good days'. On your low days, sending off a message of love to those in your circle, sending out a thank you card to those who have previously helped, and placing phone calls to check in on those around you. You'll find when you show up for others, they will show up for you too.

3. Find the Happy.
We all have 'hard stuff', but looking for the good amongst the bad will make life easier. You'll become a person others want to spend time with. People enjoy being around happy people. We each prefer to spend time with those who make us feel good about ourselves vs negativity. Negativity carries so much weight, and ain't nobody got time for that. Finding the silver living, isn't an innate characteristic, but one that with practice becomes easier and easier. You will find quickly that 'finding the happy' in your daily situations will make your tasks and life easier to handle. Easier to live!

our first ever 'Momcation' we picked the most expensive hotel we could find ;)

In parting, I'll leave with a few thoughts; as a newborn the Doctor's ran tests to find out "what was wrong with me". But I do not believe anything is 'wrong with me'. I was born with a disease, but having this disease not mean I am wrong or inadequate in any way. Having CF has been a beautiful gift. It has allowed me a unique life, one to have many experiences others won't have. It has allowed me to exercise faith, and find hope in a higher power. It has taught me grit, dedication and perseverance. To be strong when things are hard, harder and hardest. I pray that if you currently have a physical or mental diagnosis, that you understand nothing is 'wrong with you'.  You are perfect the way you are. Your (fill in the blank) is what makes you you. Some days will be harder than others, but each of the days are worth it. 

Xx, M