This family, y’all. You don’t even know. I barely know them and already feel a closeness and special place in my heart for them. Shooting that
evening was magical and healing for my spirit. Also it seems like I have so many mutual friends with them its like, why weren’t we already friends??
This is Christopher, who was tired and sweaty and refusing to open his eyes because the lovely and perfect setting sun was too bright. STINKER.
But what was funny is that he became aware of us trying to get him to get with it for family picture time and started teasing us. When we
weren’t in a good position, he’d start smiling. Then we’d get him where I needed him…turned it right off.
They took off his big ol’ turtle shell back brace to cool him down and it for sure helped. This mundane here, it’s ruled
their lives for 21 yrs. Pushing and pulling and lifting and changing and wiping. I saw it all and it was all so delicate and beautiful.
Big sister, Allison, is his favorite. But still, he was choosing chill mode instead of portrait mode.
He had so many pep talks about pics prior and everyone was trying annny stimulation that normally works. Nothin.
My oh my, do I love these!!
And then the angels rejoiced and his eyes opened! Before I knew it, I was finally able to meet the personality they kept telling me about!
Lisa was jostling him around, which happens to be his favorite activity.
This moment gave me goosebumps. Lisa kept telling him, “Christopher John!! You better cooperate for me! You show her how amazing you are!” Soon this
smile showed up, ear to ear. He was just beaming. He was so proud for teasing us the previous half hour. He was like, “Heeeeere I am, guys! Here’s
your beautiful boy! I’m ready to play now!” Lisa’s sigh of relief. Dad’s pride for his son. Allison’s joy for her brother’s happiness. All of it. Perfect.
He just wanted to do things in his own time on his own terms. Love a strong willed guy!
The smile became a permagrin and we. were. in. stitches!! Chris was handing him off to Lisa and Christopher just thought it all was hilarious!
Medically, I’m sure your wondering what his diagnosis is. I asked Lisa to write a little bit about her handsome guy:
“Officially he has Leukodystrophy which just means he was born without enough white matter or myelin in his brain. Functionally, he looks
like a kid with cerebral palsy. His disease has essentially left him non verbal, with a seizure disorder, poor vision and quadriplegic. However most
of his issues are from his lungs being crushed from his severe scoliosis. He’s oxygen dependent via the nasal cannula and often a ventilator. He was
predictedto live only a couple of years and my sweet boy has proved everyone wrong for 21 years now.”
But to the Loechtenfeldts, they don’t see all that medical jargon. They don’t hear statistics and life expectancy. They see their son
and brother. They see a spirit inside him so pure, none of us can begin to understand, unless you’ve witnessed it. It’s a medical phenomenon he’s
still with them but nothing slight of a miracle with how many people he’s touched in his life.
Those blue eyes though!
They were trying to settle him onto Allison and this interaction on the left was priceless.
They were once told that his smile starts at his toes because it takes so long to become this vibrant smile. It truly starts as a grin then
grows and grows till it can’t possibly get any bigger!
“They see me rooollin…” 😉 He “graduated” from Margaret B Rost school and had quite the reputation for his Chucks collection. I said,
“Are these all your shoes?! Look at how cool these are, buddy!” ::proud GIANT SMILE::
Allison has a tattoo of Christopher’s unique toes. <3
He was pretty worn out from modeling.
Even though Lisa really wanted to focus on Christopher as his state is becoming more fragile by the day, I couldn’t resist shooting everyone else while he rested.
You know what’s so cool about Allison? She’s a stand up human being. It’s had to have been a hard life having so much focus on her “sick” brother always
in and out of ICU and all his needs. But I 100% could tell that she isn’t neglected and feels just as much love from her parents as her brother. It takes a
selfless soul to always be in the background, but I SEE YOU! I know that she’d tell me that he’s made her who she is, completely enriched her life
more than hindered it. And that’s what I love about her. I’m certain your parents know how blessed they are to have you. You keep being you!
How deep must these two love each other with all the intense stress they’ve lived. The snippets of stories they told me just had me picking my jaw
up off the floor. To grow closer instead of farther is so admirable. Truly a team, each one has their special duties. I watched them all move together
like a well oiled machine to keep Christopher comfortable and things moving along. No hesitation or question from anyone. All the patience and strength in
the world bottled up into these two loving humans. God did good when he chose Christopher’s parents.
They were into each other like newly weds! I hope that infatuation never goes! Also, how gorgeous is Mama! And I love that BIG smile, Dad!
Now here’s where I ask for YOUR HELP. After shooting we got to chatting. Shocker, right? Me stay and get to know clients, pbshhhh. LOL.
So we were chatting horror stories in” care giving” and it turns out they are looking for someone to help. Christopher goes to a day program
and they are seeking an aide for a few days a week to accompany him. You don’t have to be a nurse, you just have to be a kind and loving human being.
I know a LOT of those types of people so I told her I’d be HAPPY to spread the word. You won’t regret meeting this family! Such genuine and loving people.
SO glad he was finally healthy enough and outside hospital walls to do this. I know you’ll treasure this collection because I DO! Ha! It was
more than my pleasure to do this for you. Please print and hang all over because these smiles will guarantee to turn any bad day around!! Hugs and I
hope you find someone to help soon! Heart, Melanie.