We learned lots from our outing yesterday. Specifically, that even with her increased energy from the feeds and being able to breathe so well, she is still recovering and fatigues easily.
Except during sacrament meeting.
(Note to self: No more naps before Sacrament meeting.)
We also tried the feeding pump and backpack yesterday, which is super exciting, except that she is still too small and falls over backwards. She’s almost big enough, and is interested, but she is going to have to get stronger before she can carry the backpack.
In the meantime, we have this old insulated lunchbox, and it is working perfectly. All her emergency kit supplies are in the top section, and an extra tube-friendly onesie is in the front pocket just in case:
Then on the inside, we can fit extra formula, an extension just in case, and then what we need for her feeding and cleanup: ice packs, food already mixed (we use Nourish, but add cream and apple juice), water for flushing the tube, the cup and syringe and a tiny bottle of dish soap. Perfect.
I decided to feed her in nursery. I couldn’t just feed her in the bathroom, that’s gross. I couldn’t feed her in the mother’s room because it seems silly when she is all grown up. Just feeding her in the hallway somewhere seems intrusive (even if she did spend most of Sacrament meeting pulling up her dress to show everyone her new tube). I finally ended up in the nursery, which seemed to normalize it for her, help the other children see in a non-weird way, give the chance for her new teachers to get comfortable with her tube and her, and transition her back into normal activity without any drama. By the time everyone else had already finished the cool puzzles while she was doing her feeding, she was ready to get down and get started!
Then I was able to sneak out easily to take it all back to the kitchen for cleaning up and packing it all away again. That seemed to work alright. It felt good to figure out practically how to get everything done and still function at church. I went back to check on her after I cleaned up, and she was doing just fine. She had already stolen the baby doll, and was wrapping her self up in some blanket and telling people she was a burrito.
It was lovely to see old and new friends this afternoon, and to receive their words of encouragement. It is a lonely road, sometimes, with so many children or so many special needs, anyway, and not always having the ability to connect or invest in friendships the same way as before. I really, really appreciate the kindness of those who greeted us today – and who were patient with my daughter repeatedly flashing the crowd.
One thing I wanted to clarify, now that I have had some sleep, was about a comment we saw many times on social media when she was coding and struggling with extubation and we weren’t sure she was going to pull through this time – and then she did, again. So many people said:
God is good!
Or other similar comments.
While we undoubtedly agree, we did want to speak up and share a bit of our own faith system regarding this issue.
It’s also close to our heart because we know so many other special parents whose little ones didn’t pull through, or her cohorts that didn’t make it this long, and even others who lost their sweet children unexpectedly when they were as healthy as anything.
And because we live every day knowing – even on great days like today – that we don’t know how many days we have left.
So we couldn’t keep quiet on this one, and needed to express some thoughts.
One is that we do agree that Heavenly Father is “good”. We do. But our faith system isn’t a prosperity gospel kind of doctrine. While we don’t think God wants bad things to happen to us, and we don’t believe God uses hard experiences just for the purpose of punishing us, we do think difficult experiences are part of the overall plan of experiencing mortality.
And mortality is part of the plan, no matter how good God is, and that means people die sometimes.
Because we are mortal.
God is good, but not because Kyrie lived.
God is good because of who God is (has become).
God would still be good if Kyrie had passed, no matter how tragic and awful that would have been for us.
And He would have grieved with us, we believe, just as He did when my father passed from cancer or when my mother was killed.
God wasn’t “good” when Kyrie survived, and “bad” when I got cancer.
God wasn’t “good” when Kyrie survived, but “bad” when He allowed free agency – the ability to choose – even when that meant her biological mother would choose to use drugs. God wasn’t “bad” when the natural consequences of this mortal world we live in meant that a mother using drugs had negative consequences on the child she was carrying. God wasn’t “bad” when Kyrie’s twin sister didn’t survive that day, that day when I held them on the ambulance that brought them from the jail when they were born.
God was good in those moments, too. God remembered Kyrie – and her twin sister – in those moments, too. He even remembered their mother, who made such horrific choices and yet came to that place through the traumas she herself had already endured. He knew, and He was present, and He was still God.
When my mother was killed, He knew, and was He was present, and He wept with us.
When I had cancer, He knew, and He was present, and He used every resource to help us.
But sometimes you don’t survive cancer, like my father.
Sometimes you don’t survive a jeep and a semi smashing into your car, like my mother.
Sometimes little boys with a southern drawl and understated enthusiasm don’t make it, even when your mom knows better than anyone exactly what to do.
Sometimes little girls who can’t breathe have brains injured beyond functioning, or hearts that nearly explode, or bodies that are just too tired.
It’s awful. It’s horrible. It’s heart-breaking.
But it doesn’t make God bad.
And when we do beat cancer, and when little girls gulp for breath again, and when we survive against all odds, we are relieved and grateful and know to recognize the Holy One who provided a plan of happiness in the first place, the Divine One who ordained families as good and necessary for our eternal progression, the Only One who is a Perfect Parent – giving us life, letting us live it, and loving us anyway.
Giving us the ability to choose was the only way we could know what happiness truly is. We can’t know the sweet without also knowing the bitter. It’s also true that means natural consequences play out, and even that sometimes loved ones pass and little ones die young.
But He is still my Father and my God, regardless.
And “good”, even when life is really hard.
And when life is super hard, I don’t think it means He has abandoned us. I think He sends us as much help and comfort as possible to help us endure horrific experiences because He does care so very much.
And when you care so very much, you do the same for others that He has done for you.
So when your daughter survives a stroke and endures all awful hard work of therapy, then you go sing a song to cheer on your favorite cowboy when it’s his turn.
And when your children had a scary week worrying about their baby sister in the hospital, then you give them all the support they need.
Even when that means sword fighting with biological parents.
And maybe if your mom said she wants to move two hours away to hide the boyfriend with warrants instead of visiting you, then you get the biggest princess bubble wand there is, plus a video call with your safe cousin to talk about new training bras because you are telling everyone in the world about it all week long.
Maybe we are just learning that we are in this together, that we need each other, that friends and family are like an extra bolus in your gtube, giving you just enough strength to keep breathing through just one more day.