They give you like a 5 day grace on the overdue books, but with the movies they are sticklers

Mya is still out of school and we came back around on gymnastics day, so off we went. Gymnastics is usually my mini meditation hour, 50 minutes, whatever. Half the time I cannot see them in the back of the gym and so I sit and mess with my phone, sip my tea, and sit some more. Most of the other moms run out for errands but Ella would freak if she ran out for help with the potty (think leotard) and I was missing, or mostly I just look forward to my zen time, so I stay in the lonely school day lobby. Clayton calls it alone time, I call it precious. We are always running late because Ella refuses to get dressed until I convince her leotards are pretty and she can change into a skirt afterwards anyway. Today she was afraid to be cold. We calmly and politely (not exactly) settled on long sleeves and leggings. Whatever, she is 4. Anyway, adding a monitor, suction, oxygen and the giant stroller means we bumped in a little stressed. Our weekly routine involves a quick trip to the library after class before we race the bus home but we missed last week due to the whole respiratory distress. Mya survived the 50 minutes without alarms so we decided to give it a go today. As we were waiting to check out we stood behind a mom from gymnastics class who was patiently having her daughter scan the books. She shook her head and mumbled something about everything taking forever. And I nodded as I looked down at my company. Yes it does.

Here is the moral of the story: life with kids is cumbersome. I have been following a new website called 'The Mighty' lately. It is basically a collection of positive stories written by parents or individuals living with all ranges of disabilities or medical challenges. The January prompt was on what you would tell yourself if you could go back to diagnosis day. I have a fairly long list but on that list is this: just be prepared to learn patience. Grocery shopping while pushing a wheelchair and pulling the shopping cart is not the most efficient was to get it done, especially with 2 additional assistants standing exactly where you are trying to go. But it gets you food and it kills a few hours. If you shop at Costco and time it right it also gets you free snacks. When you pass your kid the cold that made you feel cruddy for 2 days be prepared for a few weeks of carrying around tangled wires. And pray for warm weather. Unloading that nonsense when it is 45 and sunny is way better than when it is 5 and windy. Dress appropriately. I think you get used to cumbersome. Cumbersome just means you have to plan ahead, or start packing the car before they get up, or show up perpetually late and stop apologizing. Sometimes it means you plan an afternoon around free snacks and slow down a lot of other shoppers. If I could go back to diagnosis day I would tell myself that there will be parts of this that are very difficult, but not to stress about the every day logistics. One day you will be talking to a child on oxygen in the gymnastics lobby and feel every eye on you. They will be wondering how you made it out of the house and you will be deciding if you can return those overdue movies and make it back before your kid needs more breathing treatments. It will be a judgement call you will be qualified to make.

7 months to go, but who is counting (that reads like an announcement we definitely don't have)

I don't know if you ever get used to the weight on your shoulders. Am I the only one who feels it? It's like even when your days are sailing there is this thing nudging you that something is wrong. And you can't put your finger on it until one day it hits you: it is everything. Mya is sleeping again, only this time there was nothing that changed that we can blame. And she is not breathing very well, like when she is sitting up straight she is obstructing even at her healthiest. And there is something that alarms at 4am every morning that requires intervention and what happens that day I forget to turn the alarm on? And we have to decide whether we will put her through a very painful hip surgery in a few months. Every part of me is screaming no but every doctor is screaming yes and how do we make that call?  And people keep telling us to start thinking about when we will say enough, like quality of life isn't this fluid thing that means we may see laughs again next month. They don't realize that even at her sleepiest she still settles into my shoulder when I hold her every night. I feel the weight, but then also the settling into my shoulder. We have passed her our cold and so we busted out oxygen and suction this weekend and that darn nebulizer that I had the gall to put away last week. But then when I went to adjust her nasal prongs last night that little stinker smiled at me. We went to gymnastics class today on 3 liters of oxygen and maxed out our home settings by mid-day but she doesn't have me nervous yet. She just has me adjusting the weight. Let's ride this one out at home. Please.

We have had so much going on over the last month that I feel like I should write it down. Mya received her new wheelchair. She got a custom back that they carved out (like literally with a turkey carver) to fit her boney spine. This allows her to sit back into the cushion a bit instead of curling over all the time. For the most part I have been happy with the fit. They are ordering a new headrest for her to try to see if we can get her head in a position to help prevent her obstruction. The chair is also extremely heavy and awkward so we will need to find a solution for our van. I am getting a few quotes for lift arms that would assist with loading it in the back and hopefully will be able to secure funding. The wheelbase is also really short and so the porch steps into our house are a bit more difficult to handle. We are starting to discuss adding a ramp into one of our front entrances, most likely in the garage. We also ordered her a bedroom door (she lives in what most would call the office), so hopefully soon she will have a bit more privacy and we will be able to have a bit more quiet in the living room while her vest treatments and oxygen are running. Switching children, Ella was just diagnosed with some food allergies and so we are working wheat, eggs and milk out of her diet. And those are really convenient things to work out of the diet of a 4-year-old (they aren't). And last but not least I have 3 children registered to start Kindergarten in the Fall and so in precisely 7 months I will have some extra free-time to fill. Woot