Emily's Comfy Pillows

 

Emily's Grandma King in Iowa has been making little comfy pillows for over a decade.  We gift these pillows to other children while they are in the hospital at ALL of the facilities that Emily has stayed at over the years.

A Mother's Hope Doesn't Fade

 "Courage does not always roar.  Sometimes courage is the quiet voice at the end of the day saying, 'I will try again tomorrow'."  Mary Anne Radmacher

I have prided myself on being a courageous lioness for a very long time.  I embrace my inner Leo and use it to help guide me through each situation I've encountered and especially so during this long medically fragile journey with Emily and her battle with SIOD.

Some days though, some seasons, it is more than a mother can bare.  I have struggled many times, more than I can count really, with the angst of feelings and powers beyond my understanding and those overwhelming moments of life not turning out how we would desire.  

An excerpt from my journal:

    There’s so much I don’t share, ever!  I don’t include, yet I am trying to include here as the thoughts behind how this medical journey plays out I feel is just as important to learn and grow from.  The patterns.  The challenges.  The dealing with it.  The cycles.  The depths. The highs and lows.  The outcomes and how we keep digging our way up and out...We don’t know the difference between fear/anger and happiness/joy.  Our heart rate goes up, sweaty, butterflies. What gets me is I can feel it, know it and see it playing out, yet am slow to correct it or keep quiet the voices within me.

Last weekend we held our virtual version of our 7th Annual Little Giants Farm Run. The 3rd we had swag bag pick up at the farm where we typically would have the run. The owners had a fall festival with a few vendors and sold pumpkins on our foundations behalf to help with funding for research. This was the FIRST time I was out in public amongst others since the pandemic started in March. The only reason I attended was because it was outside, following CDC guidelines and we wore masks. I was scared. I did it anyway. There weren't a lot of people by any means, but as a few more showed up, I felt my first sense of anxiety and had to walk away and take deep breaths and give myself a pep talk. For the first time I entered a world I do not want back, nor wish on anyone. I powered through with quiet courage and all has been fine, but the feelings I had that day were a reminder of what mental anguish can cause and how important mental health is.

The thing is -as a mother- my HOPE doesn't ever fade. Despite how I may or may not feel on any given day, the lioness within me roars, unleashes and I move forward to conquer another moment, another day, another season. Where do I find the strength? The courage? It is a process. A daily choice to get up and try again tomorrow.

Thank EwE!

 In honor of Emily, Dwarfism month and all children with SIOD we were thrilled to hold our VIRTUAL Farm Run this year in conjunction with the Mannfield's Fall Festival.  

Little Giants Foundation is not only a voice and face for those diagnosed with #SIOD like our Emily, it also provides support for research, connects those affected with SIOD and works to enhance awareness with families, doctors, researchers, and educators along with public and private parties.

Supporters like you help make our research and treatment a reality for those families that suffer from SIOD.  

We want you to be an active member of our community, too. Your donation means that you understand just how valuable bringing awareness to those diagnosed with rare forms of Dwarfism- in particular -Schimke Immuno-osseous Dysplasia (SIOD) is.

We are BLESSED to know you and have your support. 

The totals aren’t all the way in yet, but so far we are  a tad over 4K from our 7th Annual Little Giants Farm Run- VIRTUAL event!

Emily and Snocap would like to wish y’all a great big huge Thank Ewe for your pumpkin purchases and to those donors that made the fall fundraiser an extra special success!!

Thank you from  the bottom of our hearts! ♥️ And Snocap’s too!

An extra “BIG” thank you goes to William R Kaplan and Stacia Kaplan for coming out to make Emily’s fundraiser such a success!  Who knew that at the end of that days event when the girls came just to pick out their own pumpkins quick you’d be there and give that support! 🐑🎃🍁