I told them it was so wonderful to see their smiles, and their joy. Because for this family, hardship has settled in. Why can they still have joy? Because they are being taken care of by an Almighty God. With the words “faithful, and good” on their tongues, they praise Him. They cry, they weep, they pray, they sorrow, they grieve. But they have a hope that inspires and is contagious. They are my friends. Meet the M Family!
Steve just passed his two year mark of having ALS. He’ll joke (because that’s who he is – a very funny guy) and he’ll tell you ALS stands for , “we All Love Steve,” or “Annoying Little String” (when you have ALS, you are helpless to move that string), or “triALS.” But the truth is no matter how you define it, ALS is HARD and there is no cure. Steve has lost all ability to move most of his muscles on his own, now has a feeding tube to sustain him, and it is a challenge to even speak and breathe. All of these are outward things that don’t define the man I call my friend. So I’d like to tell you about WHO my friend Steve is, because you are blessed if you have the privilege of knowing him. He’s a man of God who studies the Bible, desires to live it out, a prayer warrior who means it when he says he’s praying for you, a faithful friend, a loving husband who adores his wife, a patient father who leads and guides his children so well, a teacher with many gifts who has touched the lives of children, and adults, and he has a growing audience on Facebook of almost 2,000 people that he blesses through his eye gaze computer with inspiration, faith, scripture, humor, the hard realities of ALS, and includes people through social media in the hardships and joys of his life.
I can’t mention this family without talking about Steve’s wife. She is one of my dearest friends, and she is Steve’s caregiver. I don’t think any of us can understand the love and sacrifice she makes every day and night for the husband she loves. She is an amazing gift to Steve, and a special friend to me. And I also think the world of those precious children! If time would allow, I’d go into detail about their love for books, D’s charm, humor (he gets it from his dad) and deep thinking for a child his age, and L’s soft spoken intelligence, her amazing writing, grace, and giving heart.
Before you take a peek at their most recent family session that took place just this week in their lovely, grassy front yard, I’d like to share with you something Steve wrote on March 8, 2020:
When I couldn’t walk anymore, it was hard.
But sitting in my wheelchair relaxing
Watching a movie or listening to music
I could forget about my ALS. I felt normal.
When I couldn’t use my arms and hands anymore, it was hard.
But sitting in my wheelchair relaxing
Praying quietly or listening to the kids laugh and play
I could forget about my ALS. I felt normal.
When I lost the ability to speak clearly, it was hard.
But sitting in my wheelchair relaxing
Looking out the window or reading something on my computer
I could forget about my ALS. I felt normal.
Not anymore.
My breathing is getting
weaker. I’m short of breath
all of the time.
Even when I am relaxing
in my wheelchair,
with each shallow
breath I am reminded
of my ALS.
But as long as I have breath, I have life.
And as long as I have life, I will live for
the One who gave his life for me.
‘I will sing to the Lord as long as I live. I will praise my God to my last breath!’ Psalms 104:33
M Family, oh what an honor to call you friends! Much love to you, always.
-Jamie
Parker, Colorado Family Photographer
Telling YOUR Story
In case you wanted to click earlier and didn’t, here’s the link to their session two years ago.
Here is link to their Go Fund Me.
