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! 🐑🎃🍁

Thank You LGF Virtual Farm Run Sponsors

 

Registration and Sponsorship is still OPEN!

 Registration is still open for our 7th annual Little Giants Farm Run. The farm run is a great way to get outside and spend a fun-filled day with family and friends. Proceeds go towards The Little Giants Foundation to raise money for SIOD awareness and help fund research. Schimke Immuno Osseous Dysplasia is a rare, genetic, life-limiting disease that causes great suffering to the children who have it. Symptoms include vascular and kidney disease, a weakened immune system, and short stature caused by problems with skeletal growth.

 

The run is a family-friendly VIRTUAL event this year including a 5k run,and a one and a half-mile walk.  This year, the event will take place on your terms on Sunday, October 4th  with swag pick up at 13714 S 84th St, Papillion, NE, 68046 on Saturday, October 3rd where CDC guidelines for Sarpy County will be followed.  * This location will also have a Pumpkin Festival for you to purchase your seasonal pumpkins with a portion of proceeds going to LGF!  

Please kindly donate an additional $10 to your registration if you would like or need your swag bag sent via snail mail.

This run is a great activity to bring families and friends with safe COVID19 practices in place together for a good cause. Little Giants Foundation was created to become a voice for those with SIOD and other rare forms of dwarfism. Please click the link below to register for our run and help raise funds while having a great time!

https://ultrasignup.com/register.aspx?did=76041

Sponsorship levels are still available as well.  Please message littlegiantsfoundation@gmail.com ASAP for the form as these are due the 21st of September.

Wife,Mom, Advocate

 

Koesters is a health and wellness business owner for It Works Global, Executive Director of the Little Giants Foundation on behalf of her eldest daughter, and she enjoys weight lifting, running and adventuring with her two daughters in her spare time. She also devotes her time and talents to numerous professional and charitable organizations. Koesters is a former high school teacher of nearly twenty years and now devotes her time to her family. She is also an outspoken advocate for SIOD (Schimke immuno-osseous dysplasia) which is a rare genetic life limiting disease that her eldest daughter endures. Erin and her husband, along with the grandparents, have been the sole caregivers and support system for their chronically ill daughter.

         Erin Koesters is honored and thrilled to represent her local community of Gretna, state of Nebraska, and our nation. She is dedicated to her passions of SIOD education, raising awareness and funding, including how each individual can contribute to help in their  own community.

 

It's Going Virtual!

 

Registration is open for 7th annual Little Giants Farm Run! VIRTUALLY

Registration is open for our 7th annual Little Giants Farm Run. The farm run is a great way to get outside and spend a fun-filled day with family and friends while social distancing. Proceeds go towards The Little Giants Foundation to raise money for SIOD awareness and help fund research. Schmike Immuno Osseous Dysplasia is a rare, genetic, life-limiting disease that causes great suffering to the children who have it. Symptoms include vascular and kidney disease, a weakened immune system, and short stature caused by problems with skeletal growth.

 

The run is a VIRTUAL event this year including a 5k run, one-mile walk and a kid’s dash. We encourage you to keep time and send it in to us via a GARMIN or other device! This year, the event will take place on Sunday, October 4th and packet pick up will  be held at 13714 S 84th St, Papillion, NE, 68046. on October 3rd where CDC guidelines will be practiced.

This run is a great activity for families to be together for a good cause. Little Giants Foundation was created to become a voice for those with SIOD and other rare forms of dwarfism. Please click the link below to register for our run and help raise funds while having a great time!

https://ultrasignup.com/register.aspx?did=76041

Keep On Moving!

 Well- for those of you following Emily's leg saga, we have an answer and some next steps toward progress.

Emily's ped doc feels she has: 

Complex regional pain syndrome is a chronic health problem that causes long-lasting pain. It is often caused by an overreaction in the body to a physical injury.

Symptoms include constant pain ranging from mild to severe. You may also sometimes have swelling, sweating, and changes in skin color and temperature in the affected area.

Complex regional pain syndrome might go away on its own over time. But in some people, the symptoms can last or even get worse. Common treatments are pain medicines, physical therapy, electrical nerve stimulation, and injecting an anesthetic into the nerves. ( Cedars-Sinai.org)

So he is working with the pain management team and some from physical therapy to set up next steps to help control her pain and not interfere with her other medications and do it all via zoom!