It’s been 18 days since Ezzy was diagnosed with the flu. I had someone say after running into us (we took to her on an evening errand so she could remember what fresh air felt like that wasn’t tied to a doctor appt), they said “oh, she looks better!” I cringed, ezzy immediately turned to me and gave me the look of “you have no clue” and she walked away to go and find the safety of her dad. I have often wondered what it would be like if she had a disease that was visible…
Ezzy’s care plan the last 18 days:
45 hrs on her vest machine and nebulizer (doing her vest 4x a day – time does not include the amount of time needed to persuade her to do them)
5 days of tamiflu
4 days of bactrium (antibiotic)
600 enzymes (to digest her food)
72 pills of orakambi (life saving CF drug)
36 vials of hypteronic saline solution (nebulized med)
18 vials of pulmazyme (nebulized med)
11 days of high dose augmentin (antibiotic)
3 doctor appts
1 chest xray
3 throat cultures (which usually bring tears because of discomfort and built up anxiety)
1 nasal swab
1 pulmonary function test
2 appts with counselor to help her process this road bump
5 consults via phone with her CF team
11 days of no school
2 missed soccer practices
3 missed soccer games
2 missed bible clubs
3 missed church services
Handful (lost count) of mental breakdowns over the injustice of having CF
Today we had another follow up consult with her team via the phone. Which by the way is so incredibly hard on the caregivers. We are tasked with the sole responsibility to assess appropriately and communicate clearly what is going on with Ezzy. The constant worry “am I missing something?” “shoot I forgot to say …before I hung up?” “what if I don’t see the whole picture?”, runs at rapid speed on a loop track in my mind.
I was anticipating other news. We were told last week if she wasnt better to be prepared for an admit to the hospital. So what did I do? I cancelled the much anticipated solo trip I have been looking forward to for months to visit a dear friend and planted by butt down so that I could continue to assess her. Richard tried to encourage me to go, that they could manage it. But after pointing out that it has been on me to care for her around the clock, it would be hard to have him make the judgement call. He works fulltime, away from the kids for 9 hrs. I live the whole primary caretaker role day in and out, even when there isn’t a sick kid (and he is one of the most hands on dads I know, there is just so much that goes into caring for her). And by the way, I am so incredibly thankful for my husband’s job that provides me this opportunity to be home, because we both said recently “it would be impossible for me to work outside the home, fulltime, because of the curve balls CF throws”.
Our family’s lives literally stopped and immediately went into crisis prevention mode the last 18 days. Nonessential activities were cut, family members picking up the slack around the house or watching the naughty 2 yr old became the norm. We all found the weak areas that our personal strengths could manage and we tackled them. There was constant encouragement from her cheerleaders to do her vest when they saw the defeat rise in me (knowing I was having these battles on my own while they were at school or work). I was encouraged many times to just go sit in my room by myself and breathe.
You want to know what was amazing to me. You would think that as one person’s daily life became the sole priority of a family day after day, you would have seen jealousy, resentment or frustration…
Yet I watched the siblings come home from school and get her therapies going, I heard the usually obnoxious brother invite her to play minecraft with him, I witnessed countless games of phase 10 played with Kyre and her gracefully handle being slaughtered each round, even though she is the most competitive on of us all. I saw the babies snuggle up to ezzy as she has lived a better portion of her time on the couch doing treatments and just resting from her body fighting the infections. No tears were shed about feeling neglected, everyone has been so focused on getting her healthy.
A friend recently said “wow, that is just amazing, how all of those extra demands being placed on your family and you still can see that they feel loved and secure, while Ezzy is getting all the attention”.
I needed that realization. I needed someone to snap their fingers. I needed to see that God was/is carrying our family even if in the darkest moments of the battlefield of the mind, I can’t grip that truth.
Her team today said that because her lung function test came back good and her culture showed no new bugs growing in her lungs, that she can go to school this week. ½ days only. They said the risk of being exposed to other stuff is not enough to keep her back and continue to impact her quality of life. She has had it being home, she has had it coughing and told us she is “so tired of coughing all the time”. They are starting her on a steroid to see if it can help address this wet cough that won’t go away. We are still in the unknown. I have to call her team on thursday to let them know if we have seen any changes, the possibility of a hospital admit is looming over our heads, which is a whole other giant for our family to battle.
I do truly believe that she has been carried by many and brought straight to God as others plead and intercede to God our Father. To those of you who have sent me encouraging words, provided dinner for our family, told me they are praying, texted asking updates on her, assured me they have prayer circles praying, and those that have asked me how I am doing. THANK YOU. The most believable lie the enemy of my heart wants me to believe is that God has forgotten Ezzy and he doesn’t care and that we are all alone in this battle.
So tomorrow as my warrior crosses your heart, I am going to ask you to pray specifically for her as she goes to school, out of the safe bubble we created for her 18 days ago. Pray that the doctors continue to have discernment for her care and that the steroids will loosen up this cough that has her worn out.
I heard a sermon from a friend today and he said “we have to trust God and not our circumstances”. So that is what I am going to choose to do, even if it feels like groundhogs day, I am going to stop asking “God what are you doing” and instead ask him “God can you show me where you are in this”. It has been mentally, physically, emotionally and down right draining the last 18 days. I am not perfect and I definitely don’t have this life of faith thing perfected, but I have to share that I even in the valley, I am becoming aware that he IS there and has NOT forgotten my girl.
More than anything he recently told me, “sarah, she’s not yours, she’s mine”.
Here’s to day 19 and what God has planned for miracle girl that is always teaching me that a faith isn’t faith until it is tested.