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“Some 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?somepig
Teriffic

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One of these days . . .

8 Jan

Whenever I listen to this song by the Christian contemporary group FFH (Far From Home), it always makes me think of Sammy and others who are challenged by physical bodies which limit their abilities and freedom.

One of these I’m gonna fly
Over the mountain
One of theses days I’m gonna ride
On the silver lining
One of these days I’m gonna witness
All I’ve been missing
One of these days

One of these days I’m gonna do
All the things I’ve never done
I’m gonna finish all the races
That I’ve run but I’ve never won
I’m gonna see a million faces
And recognize every one
One of these days

One of these days
I’m gonna see the hands
that took the nails for me
One of these days
I’m gonna hold the keys
to the mansion built for me
One of these days
I’m gonna walk the streets of gold
that were paved for me
One of these days
I’m gonna see my Savior face to face
One of these days

One of these days I’m gonna see
Just what became of me
On the day that I believed
And you took myself from me
And I believe that I will see
What I’d have been if you didn’t save me
One of these days

One of these days I’m gonna talk
With all the saints that have gone before
In their sandals I will walk
And we will sit upon the shore
And I will learn all the things
That I never knew before
All this and more

One of these days I’m gonna be
In a place where there’s no more need
No more pain and no more grief
No more foolish disbelief
Ah the joy that there will be
When at last we finally see
One of these days

I’m gonna see my Jesus face to face
One of these days

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Giving

1 Mar

I’m a giver, not a taker. And it goes against my nature to ask people for money. The way that you may feel about public speaking is the way I feel about soliciting donations.

But, a couple of times each year, I’m forced to face my fear for the benefit of others with an appeal to my friends and social media contacts to give some of their hard-earned money to help a cause that they likely can’t even pronounce. (Heck, it took me an entire week to learn how to say it and spell it!)

When Families for HoPE was formed, Sammy was 3 years old. He was a living, breathing 3-D presentation and all he had to do was bat his long eyelashes and flash a little grin. Back then, people were asking how they could help the cause. He was my wingman, and without him, I’m just not that charming on my own.

It has been nine years since Sammy left us. Life has gone on, and I spend my days surrounded by people who know of him but never knew him, and who will never know who I was when he was here. I was different then. Steve was different then. When he was here, Sammy inspired us to be fearless.

So today, because Families for HoPE and the HPE families it serves are so important to me, I’m stepping outside my comfort zone and asking you to please give.

For Sammy.

For me.

For HoPE.

DONATE HERE!

Click the photo to donate to Families for HoPE’s run in the Brackets For Good tournament!

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