Whats really important. Paydens story

" Most of the time when people see Payden off in his own little world or in his wheelchair or when they realize he is 'different' they just brush him off."


Words written by Emily Gumpher, about her 5 year old son Payden.  


I met Payden last November.  A week after my moms passing.  He was surrounded by a huge family.  It was a hectic time in my life, and a hectic day.  It was my first generational shoot, with 19 people, My lens broke, it was freezing cold out, and I had alot of my mind after losing my mom.  I was trying not to screw up, and I was feeling kinda anxious.  Somewhere in the middle of the chaos, Payden in his parents' arms, reached out for me.  I put my camera away, and grabbed him.  My arms will never turn down a baby, or child.  I remember the sound of a gasp in the background.  I remember thinking at the time, that they must be shocked that he wanted me.  Now I know better, Payden is filled with love and affection, and the shock I think was that I saw him as a kid, not a disability.  He wasn't strange to me, I wasn't afraid of him.  I just saw a baby who wanted me to hold him.  


Payden was born sick.  He contracted  congenital CMV while in his mothers womb.   Cmv is a widely spread virus, that effects alot of people. But if contracted by a normally healthy person, lives in the body unnoticed.  Contracted by an infant, however can spell disaster.


 "We found out because as soon as he was born he was instantly orange and had what we refer to as a blueberry muffin rash, what it really is are purple and blue spots all over his body because of dangerously low platelet counts (the component of blood that helps you clot)."




Payden was born full term, but only 4 lbs and 9 oz.  His liver and spleen were enlarged, and his poor little tummy was so swollen.  His cerebellum was underdeveloped, and he had calcium deposits on his brain.  On Paydens 2nd day of life, the doctors had a diagnoses of CCMV, and told Emily the outlook was grim.  A flurry of emotions must have spread over her, as they spoke words like "funeral arrangements" and "he probably wont live 2 weeks" .  A young mother, having held a baby inside her for 9 months, with a one year old at home, was faced with some of the worst things shes ever dealt with.  

"Payden has had around 20+ surgeries and invasive procedures including- 4 ear tubes (waiting on another Nov 17), Tonsil and adenoid removal, broviac placement and removal (central line that we took home), hernia repair, 4 liver biopsies, Liver transplant, stent placement, attempted but failed stent removal, 5 PICC placements/ removals, dialysis catheter placement/ removal, bi lateral stomach drain placement and removal, a "clean-out" surgery when he internally filled with blood 24 hours after transplant, NJ tube placement under anesthesia with placement bypassing the stomach and into the intestine to name the ones that come to mind. "


Payden did live those 2 weeks. At 7 months old, Payden took a turn for the worst.  He was put on hospice for children, and at 9 months..


"A volunteer photographer with hospice came and took family pictures of us, despite the tubes and wires. and my heart broke in a million pieces wondering if he would ever come home, would these be our last family pictures? " 

The night before Emily's birthday, the doctors told her to say goodbye to her baby.  They gave Payden 24 hours to live.  "by an act of God in the middle of the night a liver became available and he was transplanted the next day"


Payden is 4 years old.  A child who has had all the odds stacked against him.  A baby who was never supposed to live, never supposed to walk, to talk, to play.  A child who, when I took him out of his wheelchair, tried to RUN away from me.  When I met Payden last year, he could not stand on his own, and here this boy was running away from me.  He talks, its in short words and sentences, the way a one or 2 year old would, but he talks!  He loves his brothers, (Emily had another child after Payden) and he always has a smile on his face.

All of us take life for granted, we complain about stupid things.  Life is a miracle. Every day that you wake up,  every breath you breathe is a miracle.  It shouldn't have to take meeting someone like Payden to see this.  Payden is not only my hero, but my inspiration.  He has fought so many battles in his short little life, and he keeps persevering.  He is a fighter beyond words.  He is a lover in the greatest sense of the word.  Payden, changes something, in everyone he meets.  If you take the chance to see past his wheelchair, I promise you, Payden will effect your heart.  

I would like you to meet the rest of Paydens family.

Emily, a single mom.  Doing this all on her own.  Emily told me the hardest part of it all, is feeling alone.  I cant imagine doing what she does alone.  She is probably the strongest person, I will ever meet.  Its hard being a mom.   I know, I have my days, where I just wish I could have one minute to think.  Emily, lives every day with guilt.  Because she contracted this illness while pregnant.  She passed it on to her baby boy.  I have watched her, try very desperately to get the word out about cCMV.  So no other mother has to watch her baby go through this.  I watch her small stature pick up here babies, even though I'm sure her back is tired.  I watch her love her babies.  And she celebrates every tiny achievement. Emily has to live in the here and now, because who knows what the future holds for her little family. She comforts her older son, Kenley, who doesn't understand why his brother cant play like the other kids.  And who cries when his brother is hospitalized, because he doesn't know if his little brother is going to die while gone.  She takes care of a really energetic 1 year old, who doesn't really see any difference between him and his brothers.

People like Emily, need your love and support.  If you see a child with a disability, SMILE at them.  If you see the mom of a disabled child, SMILE at them.  Don't look away, don't get nervous, don't judge.  The road they are on, is far more complicated, than you can possibly imagine.  A smile goes a LONG WAY.  

I have been touched by this family.  I have learned so much about myself, and about life.  

I hope in some small way, I have helped get the word out about CMV.  

And I really hope, I have done Payden justice with this small blog.

I would like to end this blog, with an email I received from Emily, when I asked if I could write about him. and a few pictures.

"I would be honored if you would write a blog about us! Most of the time when people see Payden off in his own little world or in his wheelchair or when they realize he is 'different' they just brush him off. I've had people tell their kids they can't play with him or leave where ever we are entirely just to avoid him like they think he's contagious and the only saving grace we have is that he doesn't realize it, or I hope he doesn't. You have one of the most important jobs as a photographer, you capture times in our lives we never want to forget. Times we wish we could hold onto but know they are fleeting. Before we met you the last time we went to a photographer they kept saying they probably couldn't photograph him again for liability reasons since he was too big for their supportive baby props but couldn't yet sit up so he could possibly fall off their table unless I was willing to be in every picture. I was so mad!! That was 2008. It might sound ridiculous but I was worried about how he would do when we met you for the first time for pictures, if he would make you nervous or something. But you weren't nervous at all and still let us come back despite him getting sick on your sidewalk. It's a relief that you see him as the amazing kid he is and not just for his disability or disease. Any information you would like for the blog or pictures, anything- just let me know! Thanks Jen!"

first time I met them.

Payden journey is far from over.  He still has surgeries to have, and illnesses to get through.  His family need your prayers.  And all the families affected by CMV pray for an end to this illness.