Tag Archives: HPE

HOCKEY!!

4 Apr

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Next Wednesday, April 10 marks what would have been Sammy’s 16th birthday.  Yesterday, we had a unique opportunity to memorialize Sammy, so we took advantage of it.  We painted his name on the ice at Indiana Farmers Coliseum located at the Indiana State Fairgrounds, and it will be there tomorrow as the Indy Fuel plays the final home game of the regular season.

When the Indy Fuel hockey organization was formed five years ago, Steve and I were there for the first puck drop.  It was also my very first hockey game.  I grew up in Indiana where basketball reigns supreme and where professional football has only existed since 1984.  Aside from putting the puck in the net which is tended to by a goalie and the tendency for fights to break out, I knew nothing about hockey.  After that first game, I was a hockey fan!

We have attended several games during each of the five seasons, but we made the decision to become full-season ticket holders (36 home games) for the 2018-2019 season.  Steve and I have enjoyed the season so much.

When I imagine what our current life might look like had Sammy not been born with HPE, we would be teaching him to drive a car in preparation for his drivers license.  We would have been dropping him off at school dances, taking him to baseball practice and scheduling orthodontic appointments.  He likely would have been looking for a summer job, and hopefully would have been described as responsible, respectful, and fun-loving.

IMG_4896 (2)But we aren’t doing those things because he isn’t here, and he never had a brother or sister to help fill the empty space left behind.  Instead, we go to hockey games, and Sammy goes with us in our hearts.

On game nights as I walk down the main concourse outside the Coliseum, I remember pushing Sammy’s wheelchair in that very spot and stopping to tie a green helium balloon to his wrist during the Indiana State Fair.  As we park by the Arts building, I remember taking Sammy into that building because it was air conditioned and how we placed wet paper towels on his arms and legs to try to cool him down.  As we pass by the Cattle Barn, I remember how engaged Sammy was when watching the dairy cows.

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As I sit in my seat at each and every game, I look across the ice and remember where we sat together for the circus.  Because of Sammy’s wheelchair, we were able to sit in the handicapped section right down on the floor where the ice is now.  You can’t even begin to imagine the fear I had as I watched the lions and tigers being led in and out of an opening that seemed way too close for this momma’s comfort.  And, I remember watching his fascinated reaction to the performers in the motorcycle cage (aka “globe of death”).  It freaked me out, but it was his favorite part.

In the past 16 years since Sammy came into our life, I would have never predicted that hockey would help sustain us in the grieving process, but no matter the cost of parking and tickets, this hockey season has been priceless.

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Some Kid

10 Mar

As an administrator of the FamiliesforHoPE.org website, I’ve been spending time making updates to the site in preparation for a new look to be unveiled later this month during Holoprosencephaly Awareness Week.  As a result, I came across this post I had written in 2010, and thought I’d share it here since I referenced Sammy.

Some Kid

Throughout my journey in the HPE world, I have had the privilege to personally meet many individuals with HPE. So often, I find that I don’t even have the words to adequately describe the encounter because I’m so humbled by the experience. I can recite the definition of holoprosencephaly forward and backward in my sleep; I can quote statistics off the tip of my tongue; and, I can explain the symptoms and secondary conditions that are common with the diagnosis without missing a beat. Like many of you, I feel as if I may have earned a Ph.D. in HPE, if there were such a thing.

I can tell you all about what our children have, but when it comes to describing who our children are, I do not have concise words to adequately describe them all–I could talk for days on end about all of our amazing kids with HPE. With my own son, Sammy, there are moments when I catch myself saying, “He was some kid.” Not “some kid” as in a random, nameless person; but “some kid” in that he was spectacular, similar to the phrase, “Wow, that was some game we watched last night.

Charlotte's WebSome kid” makes me think of Charlotte’s Web, the classic children’s novel by E.B. White. From the very first line, we learn that the life of Wilbur is threatened. Wilbur, a newly-born piglet, is described as “very small and weak, and it will never amount to anything.” A barn spider named Charlotte is determined to save Wilbur, so she spins a web in the barn that reads “Some Pig” in an attempt to convince the farmer and the surrounding community that Wilbur is special and should be saved.

As parents of children with HPE, we know our children are something very special, but too often, we see the looks and hear the whispers of others in our communities (and sadly, even members of our own families at times) who view our kids like little Wilbur. In her attempt to save Wilbur, Charlotte also created other webs describing Wilbur as, “terrific“, “radiant“, and “humble“.

If you were to weave a web over your child to describe him/her in 1-2 words, what would your web say?
Terrific