Loving Your Care Center
Our first visit to our care center, like most parents of a child with cystic fibrosis, was not pleasant. I vaguely remember the walk from the parking garage to the hospital. We had never been here before. Finding a place to park was a nightmare and we thought we were going to be late to our appointment.
The lights inside were bright, it smelled sterile and unfriendly. We checked in and sat. Our minds were moving thoughts around at a thousand a minute. My husband and I barely spoke to each other because we were both consumed with our own worries.
How did we end up here?
How did this happen?
Anxious and afraid
Our 11-day old beautiful son was asleep in his infant carrier next to us, blissfully unaware of what was happening around him. His parents drowning in their anxiety, praying silently that this was a mistake. We had received the phone call from our son’s doctor that Friday before, which gave me two full days to research online. Cystic fibrosis was nearly unheard of before now. For 48 hours I read every statistic and worst-care scenario that I could. Now I felt like I was dying on the inside.
Once in a room, we waited some more. In walked Jax’s new pulmonologist. After the sweat test was over, and CF was confirmed, we sat down to answer questions. My first, only, and the thing I needed to know the most was “Is he going to be ok?”.
That is when Jax’s doctor took my hands, looked me in the eye, and said “Yes. He is going to be ok”. From that moment on, our relationship with his care team blossomed.
A team that understands
Every question we have, every concern that presents itself, is answered immediately by our son’s care team. Over the last 12 years, we have been loved and cared for in the most compassionate of ways by these wonderful people. The reason they are in our lives is less than ideal, but they are so good at what they do. Without their love for what they do and their knowledge of CF, our son could not thrive like he has.
Living in the CF caregiver world is a task. It is hard. It is scary and it is full of highs and lows. Without a solid support group around you, there is no way that you can handle the daily life of taking care of someone with CF the way that you need to. Our son will not be able to grow into an adult, taking the responsibilities of caring for himself and having a back-up if he did not have the people that surround him now.
A care center that cares
Having a cystic fibrosis care center have your back and your child’s health as their top priority is an immense need. There is nothing in the CF world as valuable as finding a care center that loves your child like you do. There are so many great care teams in this country that will make you feel like your concerns are being heard and that your child is being taken care of. My family is so thankful that we have that. Because of this, we have no issues with our son's life being in their hands.
Do you love your cystic fibrosis care center? Share in the comments below!
Have you (or a loved one) been experiencing any negative side effects from Trikafta?