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
www.melissadepape.com

A Guest Blog by Tiny Light Miranda

Here is another guest blog, this time from a Tiny Light! Thank you Miranda!

If you would like to do a guest blog for us please email angela@thetinylight.com

I first read about the Tiny Light Foundation in our local paper. I like to read (or flip through) the paper so I know what’s going on in my community, but I don’t usually read the whole thing, only the stories that catch my eye. The one about the Tiny Light Foundation caught my eye and it was one of the stories that I really enjoyed reading. For a few days after reading it, I couldn’t stop thinking about it. I wanted to help out but I didn’t know how. I figured the least I could do is tell people about it. Then I remembered my mom works for a pediatrician; she probably sees kids all the time who would be wonderful candidates for this. So, after some searching, I found the paper in the recycling and read the story again, this time making note of the website and email address. I sent an email asking for a brochure or something that I can print for my mom to show the patients and explained that I’ve been through quite a bit medically so I know what it’s like for some of these families and I know how much something like this would mean to them. I got an email back from Melissa with a printable pamphlet and she told me she thought I would be a wonderful candidate for the Tiny Light Foundation as well. I had never actually thought of applying until she said that. After she mentioned it, I thought that would be so cool and applied.

I have had ten surgeries to lengthen and straighten my leg because I was born with a posteromedial bow in my tibia and fibula. This means that my lower left leg was bowed outwards and grows at a much slower rate than my other leg. After ten surgeries, we have lengthened my leg a total of almost 3 inches and it is pretty much straight. My legs are now the same length and I don’t have any pain. Other than the problem with my leg, I have a bunch of different things going on: familial hypercholesterolemia, I’ve had a kidney stone (VERY painful!!) because of a problem I had with my kidneys, I have scoliosis with pectus excavatum, and one of the valves in my heart, the mitral valve, is slightly stretched/floppy and causes the blood to flow backwards in my heart. Also, for a year and a half I was really sick. I had so many tests done and saw a bunch of different doctors but nobody could figure out what was going on. My problems just kept getting worse yet we couldn’t figure out exactly what was causing them. Thanks to a trip to the ER in the middle of the night, my mom doing some research, and finally a doctor who was determined to find out what was going on, we found out that my gall bladder isn’t functioning at all. Right now that is all we know. I’m taking a medication that’s helping, I just saw a new specialist, and I am waiting for an ERCP to see what’s going on and we will go from there. To add to it all, I have also recently started getting really bad migraines. We always wonder why I have all of these problems, so that is why I am waiting for an appointment with genetics to see if it is all related in some way.

Only a few days after I sent my story into the Tiny Light Foundation, we got a call from Jenn of Jenn Di Spirito Photography. It was very exciting! I had told my mom about the Tiny Light Foundation and that I was going to apply but forgot to tell her that I had applied so it was a nice surprise for her! I have a younger brother and sister and when I was only five years old, my brother only three, and my sister just two, our dad passed away from a heart attack. He was young, healthy, and active, so it was quite unexpected. My mom has been raising us by herself since then and she’s amazing. She is always there for me; whenever I’m in the hospital, she takes time of work and makes sure she’s there and she takes time off to take me to all the appointments and tests. So between taking time off, the different medications that I’ve had to take, and driving out to all the doctors all the time, it has cost a lot of money and keeps us quite busy. Our last family picture was probably at least five years ago, if not more, and I think we had it done at the superstore. So the pictures that the Tiny Light Foundation has provided us with mean so much to our whole family. If it weren’t for the amazing things that they do, we probably would not have such amazing pictures. 

It took a while to set up our session because of our busy schedule and the not so great weather but when we did, we had a great time! We had to change locations because we were literally swarmed by mosquitoes trying to eat us alive (not kidding… I have not seen so many mosquitoes in my life). After we went somewhere else, we had lots of fun with Jenn and she got absolutely amazing pictures! Thank you so much to everyone at the Tiny Light Foundation!! And to all the Tiny Light families - thank you for sharing your stories, you are all so very inspiring!

Lots of love, Miranda Tymoschuk

P.S. If you would like to follow how I’m doing and what I’m up to (I do a lot of fundraising) you can check out my blog at www.ilaughlovedream.blogspot.com. In March I will be off to Kenya to help build a school. All my doctors have given me the okay to go, I’ve finished fundraising over $5000 for it, and I’m signed up! Now I just have to count down the days!!