Today I am not a trooper. I feel like I’ve been pushing forward and moving forward and pulling us forward and today I am tired. I had a “CF moment” this week and I had to call Ryan and cry. I heard Quinn cough in his sleep during his nap and freaked out. Is he getting sick? What can I do to stop this? I can feel really anxious or stressed and my inner alarms go off.
This past week, as I’ve been trying to implement this additional breathing treatment and CPT, it has felt overwhelming. This additional session feels so complicated…we have to get the first session in early, the second session has to be at least six hours later, and at least an hour before Quinn goes to bed. And it is an extra 45 minutes of TV each day. It seems like a small thing but it is really frustrating to me. Thinking about food and what the best thing is for him to eat and did he have his enzymes and vitamins. Getting ready for bed and making sure his feeding tube is OK, the supplies are set up, and that his pump is ready to go. Going into his room before I go to bed, I check to see how much formula is left in the bag and do my quick math to set my alarm. 240ml left=3 hours and I set my alarm for 2am. 280ml left=3.5 hours and I set my alarm for 2:30am. When my alarm goes off, I go get the supplies and turn off his pump, flush the tube, and detach the cords. Make sure Quinn is OK, peek in at Sela, and reset my alarm.
I think I’m grieving that there is yet another step in our CF care. I don’t like CF. I wish we had nothing to do with it. I can usually talk myself through this feeling, that someone else has it worse, that it could be harder or more complicated or more horrific, all of which is true. CF is hard. CF is expensive. Even for Ryan’s Type 1 Diabetes…chronic illness is expensive and we have good insurance. Two chronic illnesses are expensive. I’m so thankful for Ryan’s job, for benevolent benefactors in our lives, for insurance, for peoples’ prayers. But today I’m mad at the five medical bills that I need to pay. I’m thankful that we are able to pay them but mad that we have to pay medical bills. Today, I’m just tired.
Today I am not a trooper. I feel like I’ve pushed and pulled and today I’m tired. Sela is teething—she got two molars in, two more molars coming in, and her gums look like her top eye teeth are bulging. She has a cough and had a fever the other night. Sela teething and having a cold really raised my anxiety because I want her to be well but I also don’t want Quinn to get sick. I immediately thought will Quinn get sick? How can we separate them? What can we do to keep him well? My internal alarms go off and sometimes it isn’t totally logical. This time I called nurse Ben at the CF Clinic—when in doubt, call nurse Ben! And he patiently reminded me that you can wash hands and clean toys but that if Quinn gets sick and it impacts his lungs then the CF Clinic will treat him. And we are a family and I can’t quarantine Quinn and Sela from one another. But there is part of me that goes into overdrive of how can I keep Quinn well. And it feels like little alarms going off in my head. And how can I help Sela when she just wants to be where Quinn is. And in the midst of all of this medical, there is just the day to day emotional of having a genuinely awesome 4.5 year old who generally makes good decisions and deals with all this stuff everyday but he also wants to push his boundaries which means mommy has been holding the boundaries. Some days this goes really well. And other days it doesn’t. This stretch has felt much harder.
Today I am not a trooper. Ryan is sick too. He has worked hard at work and in his MBA program. And his body is done or as Quinn often spells to emphasize his point…D-O-N-E, done. He is tired and sick and mostly sleeping. He has had classes each week and homework plus multiple Saturday classes. I’m proud of him for what he has been able to do and what he has learned and how he has conducted himself through it. He has had a challenging fall—he had a colonoscopy and endoscopy in October to test for Celiac Disease. He has been gluten free since then and diagnosed with Latent Celiac Disease which is a whole other post in and of itself but we have navigated this diet/health change and continue to navigate it. In November he got braces. Braces are just a bummer in general. The fall has been challenging and we’ve been looking forward to Ryan’s Christmas Break. I will confess, that when he went to bed last night sounding horrible and when he woke up this morning sounding worse, I cried. And then I cried some more a little later this morning. And then my parents took Quinn for a couple of hours today. And then I cried a bit more. I’m ready for everyone to be well, or as healthy as possible, and ready for some “new normal” and just ready to be…I’ll probably cry some more today because that just seems to be the course of events for today.
And hopefully I’ll be a trooper tomorrow.