2016 From Marshy’s Perspective

Quinn’s post-gymnastics lunch, with his brother.

Last year around this time, I was exhausted from the busiest/saddest/angriest year of my life.  Marshall had just had his first surgery for his breathing, night times were chaotic, there was no sleep, and I was constantly worried about him.  This year, we’re still tired, and I’m still angry (but that’s just me), but a lot has changed.

Marshall is growing up a lot.  He’s walking like a champ, albeit a slightly wobbly champ.  Remember the AT-AT Walkers from Empire Strikes Back?  The ones on Hoth?  That’s sort of how he walks – slight forward lean, always looks like he’s going to fall but he doesn’t (unless someone wraps cables around his knees or tosses a grenade into his belly).  He’s still in the very beginnings of communicating with us through more than gestures, but he clearly understands just about everything we say to him.  He’s sleeping in a big bed now, which makes it easier for me when I feel like I need to lie down with him.  And his hands?  His hands look good, he’s using them to hold crayons and markers, and most importantly, he can hold my hand when we go for walks now.  Sometimes in the middle of the night, he’ll swing his arm over and rest his hand on my face.  I’ll leave it there, smelling his delicious little hands, thankful that we live in a time when they could separate his fingers.

Next year, I hope to have a little interview with him so he can tell you how he feels himself.  This year, the only response I’d get to any question would be either, “Dadda” or, more frequently, “Yeah!”

“Marshy – do you love Daddy?”

“Marshy – are you having fun?”

Call it poor parenting, but sometimes, when he’s really fussy while we wait for the doctors to see us at Sick Kids, I’ll just hand him my cell phone.  He loves it.  Maybe it’s the baby blue and pink phone case I have, or it’s the lit screen, but he likes to hold it and press the button.  Invariably, he’ll get to the camera and somehow switch it to the one in front and take some selfies.  No, I swear, that’s not my default setting.  Then he’ll sit on the ground and squeal with delight as he sees his face on the screen.  My little darling.  What a face.

Happy holidays, and thanks again for following along in this life of the sometimes exhausting and always incredible Marshall Ku (photos below are courtesy of his new fingers).



5 thoughts on “2016 From Marshy’s Perspective

  1. Thank you for this. Love to your family especially during the Holidays. I’ve had to close my FB page ; so much unsolvable politics from my mothers family. It can’t be fixed and I’ve abandoned ship! I’m
    Hoping quietly I can keep in touch with my great friends such as you near and far; life can be tough. We have had tough few months Don and I. Sometimes I think I’m going to crack up; & fearfully think there may be folks out there who would relish in my failures. Still I have myself I have Don and our home. You have a family; truly lovely to share Marshalls sweet nature; each of you precious to each other. 💛


  2. Those little fingers are a whiz with the volume control on his Nonna’s remote control too! My hearing hasn’t been quite the same since our visit!! 😉

    Most of all, we very much appreciate your courage to be so open and honest about something so personal and someone so precious. While most of us will never truly “walk a mile in your shoes”, this blog – your and your family’s story – has enlightened and educated us in a most meaningful way. Thank you!

    Wishing you, Brig and the boys a very Merry Christmas and a happy, healthy (more restful!) New Year.
    Love you guys
    Tanya, Walter and the Js


  3. Wow what a difference in Marshy! He looks so grown up and he sure seems bright and cheerful! Hope that Santa is good to you all and may you have peace in your hearts and love all around💕


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