Today | Part 6

February 19th, 2018

As a parent of a chronically ill child, who’s prognosis is yet to be determined, you make many mental deals of things you would do just so that they can have their childhood back and not have to live the unfair/unreal reality that they face.  If they can somehow get better, it will all be […]

Today

February 19th, 2017

We spent the weekend watching Maura swim and swim and then swim some more.  Facebook reminded me a few times of what traditionally is on my mind during this weekend each year.  Mo’s diagnosis.  I didn’t have the video updated and thought for a while, maybe it’s time to stop.  But then I remembered how […]

Tomorrow | Part 4

February 18th, 2016

It’s hard to believe that four years ago today, my little girl was asking me with tears in her eyes, “I’m scared Mommy – scared of how my body doesn’t work anymore.” As I look back on the blog posts I’ve put together from day one and most years after (if you’re not familiar a few […]

Maura’s Journey So Far | Juvenile Dermatomyositis

February 21st, 2015

I cannot believe it’s been another year since I mispronounced Dermatomyositis as Dermato-mitosis…and now that I understand the latin better, I think I’d prefer the latter, but we were not given choice in the initial onset, so here we are.  I don’t think you can prepare to have a little girl who has been on […]

Almost Normal | Green Bay Area Photographer

July 14th, 2013

As you can imagine with a chronically ill child, there is a lot of talk about our “new normal.”  And it’s true, our family life is different than it was and different than I thought it would be.  But one thing I’ve learned is that most everyone has challenges, whether it be a chronically ill […]

Having Faith

March 31st, 2013

It’s no secret this past year has been a rough one for us and many times it’s challenged my faith.  In those moments when well-intentioned people say things like, “it’s all in God’s plan…” or “God only gives you what you can handle…”  When you have a sick child (and I would guess when you […]

Today’s date…

February 19th, 2013

So one of my student’s asked me an innocent question today… “What’s the date Mrs. Couch?”  I thought for a minute and said, “It’s February 19th.” And then it hit me.  One year ago today Maura was diagnosed with Juvenile Dermatomyositis.  (A word that my spell check still thinks I spell incorrectly because obviously I […]

January 27th, 2013

“So give me hope in the darkness that I will see the light Cause oh they gave me such a fright But I will hold as long as you like Just promise me we’ll be alright” – Mumford and Sons This past month marks a year from the start of Juvenile Dermatomyositis showing its face […]

Looking back

January 1st, 2013

2012 was a tough year for our family to say the least, but we did our best to keep life normal and enjoy the time we had together, no matter the situation.  Here’s a little video of our year in pictures. (*note – for visitors that aren’t familiar with our daughter’s year and disease, please […]

Oh so very thankful…

December 22nd, 2012

Well, surprisingly enough – here’s my post I started the day after Thanksgiving.  Time just goes too fast.  Here’s our most recent list of things we are thankful for: 1. The chance to meet another little Couch (coming June 2013 and to answer a popular question – the shoes are grey, don’t know if it’s […]

Photography © 2012 Amanda Couch