CF – From Mom’s View

In this post, I’m going to open up from my perspective of a mom of a child of CF. This is my from heart and my viewpoint. Every Mother/Parent is going to have their own views. I appreciate and respect them. This is not easy! We just do a really good job making it look easy. I’m curious if some of my feelings are the same for all parents, even if they don’t have a child with medical needs. I also know that there are other parents who are sitting next to their children feeling helpless as their child is fighting their own fights. I think of you all and pray for you all. This is not easy!

My mornings usually start from a crappy night of sleep. My Fitbit is a lot nicer and they call it a ‘fair’ night of sleep. My two alarms go off (Yes I have two because who knows when my Fitbit or phone will die in the middle of the night and they are my traveling alarm clocks of no matter where I sleep for the night). The alarms start my day at 5:45 and I look at these numbers with so many mixed emotions. In 15 minutes, Maddox’s day starts. Yes, 6:00am M – F, we are (supposed) to be up and running. I struggle as a morning person myself and then to get him up and running?! Sigh.

6am – Maddox’s day starts, either he actually wakes up from his alarm clock or it’s me singing our morning song to get him up and going. Thankfully (at least I think I am thankful), once he is up, he is up for the day. We then make our way to the recliner in the living room, which is where his vest is. Where his medical vest for his CF treatments is located and its the first thing we tackle in the morning. Every morning. This is a dedicated 30 minute treatment. Even if we start ‘on time’, he wraps up his vest anywhere from 635 – 645am. From here I feel like the morning is then like everyone else. The slowest version of Maddox emerges. He chews his bite of breakfast so thoroughly. He puts his socks on one toe at a time. He changes his mind on his outfits 4 times. He needs to tell me a story about a game he just made up. He needs to find Blue Bear for his hug good bye (which is still my adorable little boy coming through).

In the background of his vest, you’ll see a mom packing a lunch that is full of calories/fat that he will actually eat (which could be an entire post itself). It’s packing up his backpack, it’s making sure he has two gloves and his favorite hat (because he will not wear any other hat than his favorite which is problem when it’s -10 degrees outside). Straightening my hair in the kitchen to keep him company and on track. My microwave is my mirror most mornings. There are mornings we will race each other to get dressed just to bring some energy to him in the morning. I’m running at 110% and have 1000 steps before walking out the door and he is enjoying taking his time on…. anything/everything. My patience is tested every… single…. morning.

It’s quick check around the house to make sure everything is turned off and we are out the door for the drive to school. The goal is in the car by 715. Some days it’s a victory and other days I’m thankful we are in the car at all. Thankfully, it’s a really quick drive to school for us. We get to the school for the wrap around care. I walk in the building, sign him in, get my hug for the day and I’m rushing out the door. I’m exhausted before my day has even begun. And I’m not a soda or coffee drinker. I only drink water (not even juice). The soda will literally give me the jitters and coffee – ew!

I sit in my car and give myself 30 seconds to revisit how the morning went. Did the morning go ok, does he have everything he needs, did I forget anything? There are days I have tears in my eyes that I yelled at him to much that he just doesn’t appreciate efficiency and I forgot that he is 6 and not 36. I think to myself, tomorrow we’ll be better. There are mornings I have a smile on my face that he had a funny story on the way to school, we sang a song together or chatted about plans for the weekend. I put the car into Drive and going through the mental checklists of everything I have for him before I put my car back into Park.

Here is my morning commute; Are we good on his med inventory? Did I get a text from either of our vendors that I need to re up? Does school and wrap around have enough enzymes? When is his next CF appointment? Don’t forget to remind Billie of the new goo for his next blood draw. Then the mom thoughts kick in; he’s still such a little guy, why isn’t he catching up? Is the Trikafta working like it should? Am I noticing any changes that I need to be worried about? Usually about halfway through my drive to work, I have my to do list for my lunch break all done. I always get stopped at the same stop and go light so I take a really fast look at pictures on my phone of him and his fun personality and bring myself back down from all my worries. He’s ok. He’s doing great, he’s a 6 year old adventurous little boy. I’m in the parking lot at work and I attempt to transition from mom to working professional. I badge in at the door and my other day starts.

My work day ends at 5 and it’s a call to Dad to see where my boys are; either just being picked up from wrap around or just walking in the door and the 2nd half of my mom day starts up. Thankfully Nick is home to be with us at night. We are home usually 5:30 (if it’s not a karate night) and then it’s emptying out the backpack, looking to see if we have any homework, try to get creative for dinners (something I need to for sure do a better job of planning ahead of time) and then eat. After that we have about about 20 minutes to hang out. By now, I’m wiped out and Maddox is still going at 100%. The kid seriously doesn’t shut off until you put him to bed.

The bedtime vest treatment starts and we include his nebs. We usually try to have vest started at 7- 715pm. We’re rocking another 30 minute treatment. In this time as Maddox is chilling either I’m on the couch scrolling social media and personal emails or it’s cleaning up something. I have one area of the kitchen that I have to have clean every night. So it’s working through the stuff to get that area clean.

His vest is over and then starts the kid bed time routine and I feel we are right in line with everyone else on this one. How long does it take to get a drink of water or brush teeth? #seriously! Our routine works for us, we’ll read 15 minutes of books and then I crawl into bed with him for our 2 Dude Perfect videos. The videos end, he rolls over and passes out. By now it’s 830-845pm. I am laying in his bed listening to him sleep, making sure he sounds clear and that he is breathing a good deep breath. Ever since I laid on his floor in his room when he was 6 months and he had RSV, I will always take a listen to see how he is doing. That night scared me so bad.

I pull myself out of his bed, trip over clothes or stuffies on the floor and make my way to the living room. Nick is usually working through his bedtime routine. This is my struggle every night. I really should read a book, do my nails, do a facial mask, put lotions on my hands, turn on TV and get hooked to a show. I sit on the couch – just exhausted. My eyelids are so heavy.

I have the best intentions, I grab my big, soft, warm comfy blanket and a fluffy pillow and find a spot on our couch. Some nights I will get a chapter or two in my book. Some nights I will make it to the forecast so I can make sure to tell Maddox if it’s sweatshirt day or a jacket day. Some nights I actually make it to bed before I pass out but man that walk from the living room to our room is just enough to wake me up and I have lists in my head that I start working on for the next day. What to pack for his lunch, should I pack a lunch for myself, my clothes for the next day, do we have karate or Cub Scouts after school. Before I know it, I’m either on the couch waking up when Nick’s leaving for work (230am) or I’m laying in bed wide awake.

I am one of those where I am truly working for the weekend where I can sleep in, even if its an extra 30 minutes. It’s such a huge impact on my self schedule ;). We still have to do vest but it’s on our own schedule vs the schedule we have in the morning for school days. Never a dull moment.

In 2021, I was diagnosed with a chronic/life long condition. I went from never having any medications to quite a few daily ones. Now, I have follow up blood tests to get everything back in order and have to mentally work through that. Everyone knows how well I do at blood draws. So I have that on my radar too as not to lose track of my own medications and appointments. Fun Times.

2022 is a year that I am working on myself. Read 22 books, Lose 22 pounds and Party like I’m 22. I am researching on how to bring humor to the workplace, I am telling more Dad Jokes than I ever had. I think everyone loves to laugh at me as I’m laughing at these stupid jokes, but they’re funny to me. I’m already 3 books down on the countdown with a huge pile I have been collecting from all the conferences I’ve been to over the years. The 22 lbs is my biggest trick for ’22. Not really sure how the hell I am going to fit that in. I have been trying to get a walk in every day at work on my lunch break and that’s been helping my afternoons fly by for sure. As mentioned I already only drink water so this is going to be quite the challenge.

Maddox’s CF is just part of our routine and as I’ve mentioned in the past, since we were new parents, we didn’t know anything different and it’s how our schedule is. This year, I am also going to be Maddox’s biggest advocate. This will continue with his doctor’s and with the CF Community.

The wind is back in my sails and I’m re-energized. I have taken a lot of steps to get myself here and I’m proud of it. I’m excited to continue to push myself to take care of myself. I also appreciate my partner in crime. 2021 has presented so many new challenges and questions but Nick and I have continued to stick by each other and walk through it together.

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