This post was sponsored by Walgreens Cystic Fibrosis Services as part of an Influencer Activation for Influence Central. All thoughts and opinions are my own.
Twenty minutes of red-faced, sweaty screaming and writhing.
It takes all of my willpower to continue on through these types of breathing treatments with my 11 month old son Bennett. Thankfully every day is not such a fight but tonight he was over tired and hungry by the time we got to his nebulizer and airway clearance vest treatment. With all of the yelling and flailing going on you might think it was some sort of medieval torture.
For those living with Cystic Fibrosis, treatment compliance is of the utmost importance. Preventative care has come a long way in the past few years and those with CF are living longer and healthier lives. Even though I want to stop in the middle of the treatments like this one, I push through it because I know it is what is best for him.
“It’s OK, little bear. Just a few more minutes.”
His face gets redder, his screams get louder, and his head gets sweatier.
Unfortunately, this is the reality of doing breathing treatments on infants with Cystic Fibrosis. As a parent it is so hard to push through during these times and my mind starts going to the big “Why?” question.
Why does my baby have to have this horrible disease? What will we face in the coming days, months, years?
Those thoughts are not productive and there is no good answer. At this age, and likely for a few more years, he won’t understand the importance of doing his preventative breathing treatments or taking enzymes before meals. So my husband and I must be proactive in how we react to all that goes along with CF so that as Bennett grows up he doesn’t view it as something negative, but just something that is part of the day. Keeping those thoughts in check has also greatly benefited my emotional well-being so that I can stay better focused on the happy times with my family.
Tips For Finding Balance In Cystic Fibrosis Care
- Practice What You Preach – Our children are always watching. Do not give up on a task or a goal. Seeing you follow through on things will create that same motivation in your kids.
- Make It Fun – Whatever makes your child happy during treatment time, just do it. Singing, dancing, silly faces, watching videos, reading books. Our philosophy is anything that creates a smile is fair game, especially at this young age when he doesn’t understand what is going on.
- Be Informed – There is SO much research going on in the CF world that we can truly feel optimistic about where treatments are headed and how they have changed in just the past few years. Keeping up-to-date on current research and new treatments can be really motivating and exciting and help keep the family in a positive state of mind.
- Stay Positive – There are scary things that can, and will, happen due to CF. Dwelling on those negative thoughts is not productive and will prevent everyone from enjoying life. Focus on the positives and enjoy small victories.
- Keep A Routine – Have a set place for medications and medical equipment so you and your child always know where things are when you need them. Keep up with cleaning and sterilizing equipment in a timely manner. The less stress associated with treatment and medication times, the easier it will be.
- Enjoy Life – Our philosophy on raising our son with CF is to let him enjoy life. We have spoken to our doctor about this and all agree that Bennett will have many, unavoidable unpleasant times in his life so we don’t want to make it any more unpleasant by putting restrictions on activities or making him feel left out of anything.
There are many wonderful organizations and support for patient’s and caregivers of those with CF. Whether you need emotional support, assistance with medication, or help navigating insurance benefits the team at Walgreen’s Cystic Fibrosis Services can help. We can all become CF Champions with Walgreen’s by “Navigating The Journey, Together.”