Braden’s suction machine arrived yesterday. Wait! What? Hold on a second! I do not have a white lab coat or initials after my name and that thing looks a smidge intimidating! I sat for a moment yesterday and stared at it sitting on our buffet. We are quickly running out of room for Braden’s supplies. I looked at it. I stared at it. That machine is our last line of defense before an ambulance ride. *breathe in* That machine is designed to save lives. *breathe out* My child needs a life saving device. *breathe in* Oh my goodness. *breathe oute* How did we get here so quickly? *breathe out*
Then, quick as that we moved on. Those are the moments we refuse to characterize our lives. Yet they are still there. The life we had on Tuesday is not the life we have today. Braden coughed in the next room over, and it snapped us back into the mode that doesn’t have a name. I guess we could dub it Superhero mode. Although I could just call myself the Fluid Fixer. That’s what life feels like these days. Drool due to his neurological condition, amazing boogers due to his immune system’s IgA deficiency, excessive urine due to an overactive bladder and urinary incontinence, and oh the vomit lately. That’s our wild card though. It also had us a tad bit concerned.
Last night I waved the white flag. Braden vomited the entire contents of his stomach all over his ipad. It is most likely ruined, although we are doing our best to revive it. We do our best to remain fluid to adapt to each new “normal” we arrive at, but there is a point where you just might be drowing in that fluidity. We are thankful that each time we get to this point a life raft floats by. This week A-T has taken much energy from this family, and losing his ipad is the last straw. For our children, it gives them the ability to do so much that they can’t do otherwise. For example, put a puzzle together. Braden’s fine motor skills are too poor to do a traditional puzzle, but he can accomplish one on his ipad by dragging his finger. So, we are hoping that it can be saved.
Today the sun is shining, and this Winks family will be in our garage working towards the promise of bright things. The kids will draw on the driveway with chalk, help lug bags, and find the beauty in the promise of another day. I will do my best to stay positive, but I would be lying if I didn’t say that I am a bit concerned about my little man. After all, people don’t order hospital beds for their five year olds for fun.