Mama said I could have bread.
No, Mama said the doctor said no bread.
Mama said I could have water.
No, Mama said the doctor said no water.
Mama said I could hold my baby doll.
Mama loves when you hold your baby doll.
This was Kyrie’s discussion with Nathan just before sacrament was passed.
She loves taking sacrament. We talk about it a lot at our house, mostly because we all need so many second chances and fresh starts and help renewing covenants to do better and be kinder and focus more on helping others and being grateful for the atonement.
But also, if you had nothing in your mouth for the last six days, you would be pretty excited about a piece of bread and swallow of water, too.
Except she cannot.
We have been praying for her for this moment, praying to know how to help her, praying that somehow we could get through this together, where we continue taking sacrament even while she gets used to not taking sacrament, praying to help her adjust to this new experience without shrieking that disrupted everyone else’s experience.
And our prayers were answered when Heavenly Father sent us a ladybug.
Good job, Springfield!
She did shriek, Ladybug!, right in the middle of sacrament, but it was a shriek of delight and then she settled down enough for me to take sacrament before slipping out with her and her ladybug to the great outdoors.
When we get back to our own ward, we will talk about preparing syringes that can be on the sacrament trays for her (especially since we sit up front anyway), so that she can still experience a form of partaking as she is able.
We are all learning together, but at least a ladybug saved us from it being traumatic today.
What was traumatic was the message we received that with Kyrie this sick already in fall, before winter even got here, that they want us to go ahead and pull the children from public school already and bring them back home to homeschool to keep Kyrie safe through winter. It’s sad the children didn’t get a longer experience this time or that Mary couldn’t just attend school with them, but they are excited to be back home and enjoy adventures. It does scare us some that they are putting her own precautions so early, and we returned their call to see if she can go to nursery or even church at all, or how strict they are going to be this time.
We attended sacrament meeting in Springfield, though we did not get to see my brother’s family. There was getting ready drama before church, though, when a couple of the children were not paying attention or following directions or helping the others. I finally fussed at them, just to get them out on time. But it felt gross, and I felt guilty.
They felt badly, too, for being naughty. We talked about this later, and they felt terrible for being disobedient and I felt terrible for fussing. When they picked their consequence of not having cookies today, I told those two I wouldn’t get cookies either because I am also learning.
Then I promised them that if they prepared for sacrament and really thought about it, and practiced paying attention to the talks, there would be something just for us to help us do better. And the very first talk was a whole cookie analogy about obedience! They were so excited, and I loved seeing it come full circle so we could get to that increase of love place after a rough start to a day… that’s my favorite part of sacrament meeting, having a fresh start.
We have some pretty specific stuff we are working on as a family, but it’s also true we have come a long way. There is something special about offering grace and mercy to each other. And ourselves.
By the time our meetings were over, we were also hungry for lunch! We utilized the building’s kitchen for our picnic before setting off for our drive home. Yummy!
We loved that there was a table set up for the children! It was perfect! They gobbled sandwiches and chips and refilled water bottles for our short drive home. I fed Kyrie in the car, and she slept while we waited on the children – but not before busting out with THIS SONG.
We are quarantined for two weeks now, and waiting to see if we can go to church the next two weeks or not, and when we can visit grandparents or friends safely.
Right now I am scheduled to return to work October 4th, after our return from speaking in Salt Lake during leadership training and consulting with Clinic after all the latest results for Kyrie have been compiled and forwarded to them, our pediatrician, and the palliative care team.
Kyrie is sad to be leaving our host family, the Evansons. The children are sad to be leaving school. Mary is sad she didn’t even get to try to go. Nathan is sad one of his shows isn’t on Broadway when we ask for our Make-a-Wish trip to New York. I am sad I don’t know how to pay for another trip to Cincinnati in three months if I don’t even get to work this one.
But all of us are grateful to be coming home with a breathing baby girl who is still alive, and all of us are confident in Heavenly Father’s promise of sufficient for our needs. Barely avoiding a chest tube, and scaring us with a little coma time, we are glad to bring her home with us – pneumonia and all.
And, I managed to get the children their afternoon snack during the time Nathan was changing Kyrie, so we got through that one easily without hurting her feelings. Once we get home, we will negotiate it more as we all get used to this new way of life. But for today, it was gorgeous, and everyone enjoyed just enough playtime to stretch out cerebral palsy bodies and debrief autism brains and let parents breathe for a minute – even though it was Sunday, and we didn’t stay for extra long playtime, just enough for their bodies to breathe and Kyrie’s sats to go up.
She was very glad to be back in her own bed, as were we all.