Archive | holoprosencephaly RSS feed for this section

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!

Tags: , , , , , ,

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

Tags: , , , ,

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.blog.

IMG_0112.JPG

← Older Entries