Guest Blog - Tiny Light Mom Kristi

Living with a Tiny Light.

Hearing the news for the first time, that your son or daughter has something “wrong” with them is life changing for families of children with disabilities.  Every dream, hope and vision you had for them suddenly changes to fear, anxiety and unfailing worry.  You wonder what the future holds for them, if they will suffer and how, as a family unit, you will cope. 

It took us a long time to understand how to move forward once we learned of our son’s diagnosis.  In December of 2009 (Ben was sixteen months old) we were told of his condition while staying at The Stollery Children’s Hospital for nutrition related concerns.  Ponti-Cerebellar Hypoplasia Type 3, his diagnosis, is so rare that he is only one of five confirmed cases.  In the entire world.  You have a greater chance of winning the lottery than having a child like Ben (approximately six times over!).  To us, Ben’s diagnosis was not overly surprising but with such a small number of people having it, the information on PCH is nearly non-existent causing serious frustration.  The biggest question was not how did this happen but instead, where do we go from here?

First, we grieved.  We considered everything that Benjamin would not do (he experiences major global delay).   He will never play football with his daddy, he will never get married, he will never have kids of his own… the list goes on.

And we cried and screamed and yelled and… we blamed.

But then, with time, we got over it; our family has not looked back since.  Once we accepted all that he wouldn’t be able to do, we were able to focus more clearly on what he could do and what he will do.

For example, Ben CAN take some foods orally, push his arms out of his sleeves when getting dressed, help move his arms out of the straps from his car-seat, say Mom, Dad and no, he can identify when he is hungry, show when he’s happy and when he’s not, he can anticipate, give a high-five, put his head under the shower stream, get himself out of his chair, push a ball, commando crawl, and recognize his favorite things and people.  To name just a few.  He continues to fight the barriers working against him; he is such an inspiration to all of us.

I admit that some days are extremely hard and I need additional support; as much as I consider our family normal, there are many days that I need to remind myself that our living situation is not typical.  That Ben does require “extra” care.  And that I (we) need to take the time to be the best parents and individuals we can be, not just for Ben, but for all our children.  As with all kids, things that worked yesterday may not work tomorrow and so we are constantly adjusting.

The outlook for Ben was far from positive but he has managed to overcome every obstacle put in his way and has proven that with a little determination, you can beat the odds set against you.  Today, we have a healthy, vibrant, and joyful little boy who brightens our lives and infects everyone he meets with his spirited laugh.


Benjamin and children like him (or completely different, but equally wonderful) are Tiny Lights that show society just how perfect “wrong” can be. With the continuous push for inclusion, understanding and tolerance, we are paving the way for a brighter future for our children.  The Tiny Light Foundation provides families with the opportunity share the best parts of our world and we are extremely grateful they exist; capturing our beautiful children and presenting their stories to the world.   

 :) Kristi

Images Captured by Melissa DePape Photography

My Journey ~ Melissa (founder of TTLF)

If someone would have come to me and said " you would have a special needs Child"  I would have never believed them.  Never in a million years.

Now when I look back I can't picture my life with out Nevaeh.  She is this amazing human being who has this glow and love about her, not because she has downs.  She is like that because that is who she is.  I have had people recommend books, pamphlets, websites and I want nothing but the best for her, but not at the expense of us (as a family) I don't want to know her limitations, or the things she may never do or will do late. I don't want to put so much focus on her disability, but more on her abilities.  Enjoying her being a baby not a baby with DS.  I think some people struggled with that.  I think they thought I was in denial.  And maybe I was a little, but I never forgot the fact that yes she is special, but she is also a baby, a child.  And I have so many years of worry ahead of me, that I am just going to enjoy her for who she is and what she can do.  I am going to give her as much love as I can.  I want to teach her to be strong, to be happy, proud.  To be herself.  I want that for both my girls.  Special needs or not.

Photography is my way of artistically expressing what I see.  I love being able to take a moment in time and looking back on it, remembering.  I often see things, or people.  I think "I want to capture that I want to see this again, just like that."  I want to see the long lashes of my girls from me looking down on them. I want to see everything just as it is.

Before I began blogging I used to think and pictures were worth a thousand words, but I think being able to put words with photos help people understand more what you see.  Gives them a peek into my world and what makes it crazy, happy, special.

Putting my love of children, photos and words all together makes what The Tiny Light Foundation does so amazing.  We let other people see and read what amazing children we have.  It brings a sense of empathy and understanding. It builds a community.

One thing I love that The Tiny Light foundation does is when a child who in every sense looks typical but struggles with everyday things we take for granted. Often that child will be looked at and judged.  People will frown and say "what a bad kid" or "bad parenting".  Some of these stories shine a little light on these kids and their parents who have had labels put on them.  It helps us understand. It helps us empathize.

I am thankful for every child I have had the honour to see and get to know through their photos and stories.  The strength and the will to live and fight is truly the most inspiring thing I have witnessed.  These children and their families are amazing.  Being one of these parents I still read these stories and look at my life and can not help but to be thankful for what I have.  Thankful to brush my girls hair, kiss each little finger, and love them EVERYDAY!

Lately, I can't help but to feel so sad for the Tiny Lights we have lost.  The families who are missing their babies.  And there is nothing I can say or do to make things better. All I can do is work hard everyday to be sure every Tiny Light Application that comes in is handled with care, love, and done so diligently.  I know that sometimes it is hard to take the first step to apply.   You might think you have time, and you might, you probably do.  But never wait to create memories!  Never put it on hold because you child is missing a tooth, or you have a bad hair cut, or because he or she is hooked up to a machine/s,  just do it and do it now. And if your reading this and you do not qualify for a session with us The Tiny Light Foundation.  Please find a photographer in your area (we have a great list) book a session.  I promise it will be the BEST investment you will ever make.  Not only book a session but hang those memories.  Be proud of them. Enjoy them, love them.


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