I am absolutely grateful for each day- each good day and I know how hard bad days are. There are some bad days. I have very very close friends going through much harder times than me. It breaks my heart there is nothing I can do to make it any easier on them. Perspective.
Last week, on the tail of chemo- we celebrated Lily's 12th birthday. Spring is Birthday season around here and we bounce from one to another to another. It is beautiful and exhausting.
Before surgery- I did some shopping and had tentative- although mild plans for birthdays. The biggest gift for me- being present to celebrate my spring girls and yet another milestone for me.
Weeknights are crazy around here- so we had Lily's birthday "party" the Sunday before. It was a family party- 2 grandmas, Ed, Monica and Tom joining us. The cousins were going to join us- yet their house was hit with the flu.
Tuesday night, Lily's birthday day- Grandma Sandy made her dinner as requested- lettuce wraps and baked potato soup. It was fabulous. We all ate too much- so when Lily complained later of a tummy ache- well- of course.
I had just fallen asleep when Phillip gets me- Lily is sick. And so it started. She starts to cry- I can't miss EXHIBITION.
My heart breaks. She's worked so hard on her 6th grade project. Her first thought is she would let her team down. I assure her- it will be ok. one way or another. It will be ok. We will make it ok.
With adrenal Insufficiency- Lily needs extra meds when she gets sick or she could die. Not get worse, not feel bad- she will die. Her body just does not make enough cortisol to balance electrolytes, maintain blood pressure and many other important functions. Here's an old blog about it Adrenaline Rush
I give her zofran. She vomits it up within a half hour. We start the clock- we have to keep a stress dose(3 pills) of hydrocortisone down or we have to give her the shot. I suspect she has the virus that's going around, but still her system needs help. I start my cleaning/disinfecting routine. My legs are shakey- who knows if it's new chemo shakey, tired shakey, adrenaline shakey, or new brain shakey- I have muscle memory of this routine. My sick routine. Door knobs, common surfaces, everything gets wiped down. The first load of laundry is on sanitize. The piles are formed. Lily continues to vomit. Once all down the hallway.
When everyone brings meals and offers help at the same time- I say wait. This is why. Murphy's law. Phil checks on us. I say we are going to have to give her the shot. we have a "loud" adult discussion about it. According to guidelines- if we give the shot- we should go into the ER. Like I said before- I am not a doctor- but I play one in the Mallory house. I want to give her the shot so we don't HAVE to go into the ER and explain to them what is going on and wait 5 hours for fluids and for them to figure out adrenal insufficiency and how to give her the right amount. We give her the shot and call her doc at a more reasonable hour- we've got this.
We finally get to the point where it is time. She was so brave. I held her hands and Phil gave her the shot, he's always been the steadier hand than me and she did great. Within the hour she was resting better and I felt a huge weight lifted. Just in time for the other kids to wake up, Phil headed off to work and our day officially began. Then in domino fashion- this fun virus worked it's way through me, Bella, Phil and Phillip.
Sandy and Ed leave the day following- this is how it goes. Feast or famine. I call mom- she's a Lily whisperer- Lily needs the attention. She begins her own care and cleaning routine, one that I am very familiar with. I was always the sick child- flus, strep, mono- if it was going around- I got it. My stomach didn't feel right. ugh. I head upstairs to try and rest and hydrate for the coming storm.
We are officially sick of being sick. Anyone with chronic illness should be exempt from this nonsense- although it gave me a healthy appreciation for how good I do feel day to day. I got sick the afternoon of Lily's Exhibition. It was every bit as miserable as it looked. She got cleaned up and made her presentation. I was calculating the hours of puking left and Mid exhibit- Bella was hit. The troops returned home. I was sick to miss her exhibit and so sad. When Kiera did her Exhibition project, parents had a bit more of an active role- this time- it was very much student directed. Other than proofreading one letter and watching a run through of her skit- I had not been involved. I really wanted to see her hard work. I heard the play by play each week.
After a day of rest, I am better enough to watch the videos of her presentation on Gender Equality. A very tough topic and one near to our hearts. It's hard to believe this was a week ago. Not only do I have the surgery time warp- now we have this virus time warp- Losing weeks. Yet here we are- sick of sick.