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

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

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!

Tyranny of the Urgent

4 Oct

I’m beating myself up right now because I allowed something to happen that I could have easily prevented. I purchased the domain name for SammyYammy.com the summer of 2003 when he was only a few months old, and over the years, I had renewed the domain registration before it expired.

This time when the domain renewal notices came (and there were many of them filling my inbox), I was complacent and busy with other urgent activities in my life, and I just kept putting it off. Yesterday, I finally took a moment and made myself sit down and take care of the renewal. Today, I am filled with regret because SammyYammy.com is now owned by someone other than me, and I only have myself to blame.

I haven’t lost any of the information I had stored at the site because I had transferred it all to this WordPress page (SammyYammy.wordpress.com), but the domain is gone unless the current owner agrees to sell it back to me or the current owner doesn’t renew the domain within the next 12 months.

Even though I didn’t update it as often as I had hoped over the years, Sammy’s website was and is one of the most important things to me. Instead of forcing myself to step outside of the whirlwind of urgent tasks and obligations, I continued to allow a truly important thing to be shoved farther down the list. As I look down the list, the sad reality is that there are way too many other important things–needs, people, tasks–that have slipped to the bottom. That’s gonna change starting now!

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Brackets For Good

7 Mar

imageFamilies for HoPE was recently selected to participate in a unique online fundraising competition by an Indianapolis organization known as Brackets For Good. Think of the March Madness college basketball bracket of 64 teams, but instead of teams, there are 64 nonprofit organizations competing to score points (raise dollars) in a single-elimination tournament.

Last week as we embarked on our very-first Brackets For Good tournament, we weren’t sure quite what to expect, but we had hope for a respectable showing. With the support and generosity of many, we scored more points than our Round 1 opponent (American Diabetes Association of Indiana). Half of the 64 organizations were eliminated after the first round, and Families for HoPE is one of 32 organizations remaining in the tournament!

We are extremely excited to advance to Round 2; however, we have our work cut out for us. Our opponent is Joseph Maley Foundation, and in addition to being a seasoned veteran in the Brackets For Good tournament, Joseph Maley Foundation was the 2015 runner-up for the entire tournament in Indianapolis! No doubt, they are seeking to return to the final round in 2016 and finish their task of capturing the championship (and the $10,000 cash prize).

We need your help if we want to make it through to the Sweet 16! You may be familiar with the term “Cinderella Team”. Merriam-Webster dictionary defines a “Cinderella” team as:

  • someone or something that is ignored but that deserves attention or credit.
  • someone or something (such as a sports team) that is not expected to do well but that succeeds or wins in a very exciting way.

Families for HoPE goes into this round as the Cinderella team! Everything about HPE fits the definition of a Cinderella team.

  • The odds of a fetus with HPE surviving to birth is only 3%.
  • Of that 3%, very few survive to six months of age.
  • Did you know that HPE is the most common brain malformation in a developing fetus occurring between days 17 and 21 of fetal development? It generally causes early miscarriage. If you or someone you know experienced a miscarriage in the earliest stage of pregnancy, it very well could have been due to HPE.
  • Medical statistics are what they are, and physicians are unable to offer parents much hope following a diagnosis of HPE.
  • Parents are warned of their child’s future inability to walk, talk, eat, learn, grow, breathe.

We know that HPE is a common but not widely-known condition . . . “Something that is ignored but that deserves attention or credit.”

Our kiddos (and even teens and adults) with HPE are truly the all-star players on our Cinderella team who “are not expected to do well but they succeed or win in a very exciting way.” Every breath, every smile, every day!

Our goal is to raise funds for our 2016 Family Conference on Holoprosencephaly, but we know that this Brackets For Good tournament is a very good platform for raising awareness of HPE as Families for HoPE and the children we serve are able to share our Cinderella story far and wide. Won’t you please make a donation now and share this message with your family, friends, neighbors, co-workers and others so that they can help our fairy-tale story come true?

How do I donate?

Click here to donate! (100% of funds will go to Families for HoPE)

To view the entire bracket, click here

The name game . . .

23 Nov

I’ve had opportunities recently to share the story of how we chose Sammy’s name, and as I read through my blog, it doesn’t appear that I’ve shared the story here.

Did you know that Sammy was supposed to be a “Seth”?  Early in my pregnancy as we discussed names for our baby, I wanted a name from the Bible.  As I contemplated it, I was fond of Seth.  Seth was the third child of Adam and Eve.  After Cain had killed Abel, Seth was born, and according to the genealogy of Jesus found in the Gospel of Luke, it was through Seth’s lineage that Jesus was born.

Being a planner by nature, I wanted to know our baby’s gender when the time came for the big reveal at the 20 week ultrasound.  Steve and I decided that we would share the baby’s gender, but we would keep the baby’s name a secret until its birth.  Following the ultrasound confirming we were having a boy, we settled on Seth.

Due to irregularities seen during that ultrasound, it was recommended that I return for a follow-up ultrasound four weeks later.  It was during this second round of ultrasounds when I learned that our Seth had Holoprosencephaly.  We were told to expect profound mental retardation and “facial deformities” as the ultrasound indicated his nose was small, his eyes were closely-set and his eye orbits were protruding.

As I sought comfort and understanding through God’s word, I was reminded of a verse I had studied a few weeks prior.  It was 1 Samuel 16:7… Man looks at the outward appearance, but the Lord looks at the heart.  It was in that moment when I knew his name was to be “Samuel”.

Samuel

Reality of HoPE

22 Nov

I know that it can be uncomfortable to be my friend especially when I share updates on children who are sick or dying. My deepest desire is that no parent would face a life-threatening diagnosis for his/her child and none of my friends would experience the pain and heartbreak of saying goodbye to one’s child.

Can I tell you a little bit about Holoprosencephaly (HPE)? It is the most common brain malformation in a developing fetus. It occurs during days 17-21 of fetal development, and as a result, it often ends in early miscarriage. It is estimated that HPE occurs 1 in every 250 pregnancies, so if you experienced a miscarriage without an explanation of why, HPE could be the reason.

Did you know that the likelihood of a fetus with HPE surviving to birth is only 3%? Let me say that again…3%! Can you imagine the determination and will it must take to overcome those odds?

When one of our children with HPE passes away, it rocks our HPE community. We grieve for the parents, siblings and families, but I know we also celebrate the power and strength these children have had in the moments, hours, days and years that have made up the lifetimes they have known.

I will never be as strong and courageous as these little ones have been in their lives, but their examples push me to step outside of my comfort zone, to give of myself to others in sharing my journey from HPE to HoPE.

If you would like to know more about HPE or would like to help our cause, please visit http://www.FamiliesforHoPE.org. To learn more about my personal journey, visit http://www.SammyYammy.com.

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