I’m not gonna lie, the month of May has definitely been a roller coaster of emotions, stress, fun, weather, and everything in between. I had all the best intentions to have more posts of CF and everything that is going on, where we are, CF advocacy and everything in between. And then my appendix decided to change up plans a bit. I was down for the count and have been trying to catch up to life as best as I can since then.
As a parent of a CF’er, one of the things that we were told and have read about is the Mental Health side of CF.
It can be lonely – 30 minutes of treatments in the morning and 30 minutes of treatments at night; having to come in from outside earlier to get treatments done when others are still playing is tough. We sometimes compromise and have our vest treatments later on certain nights so we can enjoy the beautiful weather.
It can be stressful and where do I start with this one? We are on the phone all the time with doctors, nurses, insurance, the pharmacy and everything in between to make sure everything is in order. When letters come in the mail of bills that don’t make sense, you have to be your own advocate to get everything back in line as there is no one else that can help unless you call and ask. While the reps are generally nice on on the phone, it’s at least a minimum of 30 -45 minutes each phone call.
It can be depressing – it is so easy to fall into that mentality of whoa is me and why him? It can be overwhelming – trying to keep the chores under control at home, staying on top of your A game at work, trying to have Maddox have the best life and all the experiences he can and trying to stay on top of all the medications, treatments, and appointments. The hardest part is trying to find the balance to take care of yourself and to make sure you’re ok without being selfish and missing out on a life event from Maddox so you can breathe. I knew parenting wasn’t easy but when you throw the terrible 3’s on top of it – this mommy needs a break. 🙂
And how have I been keeping my head on straight? Its by a bunch of different things. One is the team work that Nick and I have. Its the chat and tag out when we need a break or help. Its the reality check when one is frustrated over something that really isn’t a big deal and taking over the situation so we can keep our cool. It’s just being there together through this.
Another is our friend base. It’s the extra set of hands when they are over to help us with his enzymes or his vest treatments. Just someone there to emphasize to get it done, it’s our normal routine through his push back that he just wants to play and not do his vest. It’s the coaxing and the challenges to eat one more bit so he can gain the weight. It’s staying super late in the night so we can still get his vest done. The field trips to Dairy Queen are always an extra bonus.
It’s our neighbors; being an extended set of hands for us as well. Maddox loves to walk over to our neighbors and ask – “Hey, what’s up”! And just interacting in these conversations knowing that he has a safe space in their lives and we can trust that he’s good for a few minutes while we flip laundry or take a phone call helps so much too.
Its our parents/grandparents. The Facetime chats help break up our weeks to have a new conversation throughout the week and having jokes and telling stories. Having the sleep overs so Nick and I can have a time out; catch up on house work, have an adult beverage and catch up on everything else. A tractor ride always make the day better!
Its a strong support team at work. After Maddox had his surgery, I had a pretty bad day when I got back (emotional overload from the day before) and the team was so supportive and helped me through it. I know Nick feels the same with his team too. Maddox and his CF appointments are a priority and they make sure we don’t miss any of them while we are able to flex our work around it, might be earlier mornings or longer nights but we have the support for him.
I feel just like everyone else; we have our good days and our bad days. Every story is so different and we do our best to enjoy every moment. It’s a quick hug, a calm voice and we are back on track through the tough parts. Its’ the goofiness and smiles. It’s also learning about life and struggling through the life lessons. It’s a quick mental check to make sure you’re ok and taking the time for yourself to hit the refresh button for yourself. Taking a deep breath and one foot in front of the other. We really don’t a have a choice so we try to make the most of everything!
Team Maddox 