Monday, September 15, 2014

My Little Gymnast

I don't know where the idea to enroll Ella in gymnastics came from exactly. Maybe it was the fact that she is super freakishly flexible and has loved to hang upside down like a possum ever since she was a baby. Or maybe it was because my favorite blog writer's daughter (who has Down Syndrome) was in gymnastics last year and gave me hope that Ella could do something 'typical' too. Possibly it was because one of my friends has her daughters enrolled in classes and told me how much they loved it. Maybe it was because I wanted to provide her with any available 'therapy' to help her gain more strength and balance. Or maybe I wanted to prepare her for school a little, by giving her the opportunity to be around other adults and kids and listen to instructions from someone other than me. Orrrr perhaps it was really the underlying issue that once upon a time there was a little girl who wanted desperately as a child to be a gymnast and despite many pleas and arguments, alas she never got the opportunity to take classes (no hard feelings mom.. well, at least not many) so now she is trying to live vicariously through her young (only) daughter by enrolling her in a gymnastics tumbling class at 3 years old?? 
Ehhhh.. whatever the reason is, here we are.

Last week Ella started her very first gymnastics class.. and I gotta be honest, I was a little nervous about how everything would go.

The week before classes started I made sure to get in contact with the teacher and explain to her how Ella rarely leaves my side and probably won't go out on the mats without me.

I told her how she doesn't let strangers touch her and can get very anxious in new situations.

I warned her that she might not understand everything she's supposed to do.

And probably won't follow instructions very well. 


My former friend gently suggested to the teacher afterwards that maybe Ella wasn't the one with the problem letting go... 

Needless to say she LOVED her first class. 

When Ella was first diagnosed with CdLS, every hope I had for her future was crushed. 
Every dream I had died.
I couldn't possibly imagine what her life would be like. 

I couldn't possibly have imagined this. 

Friday, September 5, 2014

Bubbles for Ellie

Some of you may have seen my Facebook post about Ella's sweet friend Ellie, who passed away unexpectedly last Sunday. We have been broken hearted this week as we remember this little girl, pray for her wonderful family, and struggle with the 'whys' of this situation. Ellie had a dual diagnosis of CdLS and a rare genetic disorder called Trisomy 4p. Ellie's mom first emailed me a few months ago to tell me she had found my blog after googling 'CdLS' when her doctors first brought it up as a possible diagnosis for Ellie. She wanted to thank me for writing it and tell me how it had helped her through some hard times. We connected over Facebook and our blogs and as I learned more about their family, I was soon humbled that she thought I was the inspiring one. A more beautiful, strong and faith-filled family I am sure exists nowhere. I have loved following Ellie's journey and was overjoyed when Ellie's family moved across the country just to be neighbors with us! Okay.. maybe they live 2 hours away, and possibly it was moreso because her dad got a job there than it was to be closer to our family, but still. 

About a month and a half ago there was a CdLS family gathering in Lincoln. We packed up the kiddos and headed south, spending the day connecting with other CdLS families, swapping stories and sharing laughs. To our delight, Ellie and her mom were able to come as well and we got to meet them for the first time face to face, although they are some of those people that we already felt like we had known our entire lives.. What a fun experience it was to finally meet someone who had previously only heard of us through the blog. What a humbling thought that I've always said if I can impact just one person's life with our story, then it was all worth it. What a joy to actually meet one of those people. We had a fun afternoon chatting and visiting and making plans to get together with the whole family soon. Little did we know we wouldn't have that opportunity this side of Heaven.

Here is a part of Ellie's story:
Ellie Jane Murray

Ellie Jane Murray
2013 ~ 2014
Our sweet angel, Ellie Jane Murray, returned to her Heavenly Father on Sunday, Aug. 31, after 15 months of a beautiful but challenging life. She was born May 16, 2013, in American Fork, UT, to Scott Aaron and Rachel Hale Murray.
Diagnosed with Trisomy 4p, a rare chromosomal disorder, Ellie faced a life of physical challenges, but she fought fiercely to overcome her trials and amazed all with what she accomplished. She had a happy disposition, big smiles and a spirit that radiated and put life in perspective for those close to her. People who interacted with Ellie wanted to be better because of knowing her and feeling her spirit. She was loved deeply by her brothers and sister, her parents, grandparents and extended family members. Her mother, father, and Grandma Nancy considered it a privilege and blessing to provide her with around-the-clock care throughout her life.

Sometimes people are afraid to ask, and sometimes people do ask what Ella's future looks like. How long do people with CdLS live? What's the life expectancy? Well, while the literature would tell you that the life expectancy for someone with CdLS technically isn't any shorter than anyone else, and there are those that go on to live well into adulthood, I know from personal experience that there are many many kiddos we lose far too soon. There are a host of complications that just 'could' go wrong with our kids. I grieve every time I hear of another CdLS child gaining their angel wings but this one hits a little closer to home. 

Ellie LOVED bubbles, so this afternoon we are spending some time together, blowing bubbles in her honor. No one knows how many days we or our loved ones have on this earth. We don't know when it might be our last day, genetic syndrome or not. And we definitely can't spend every day worrying about what could happen. But today we are making the most of the time we do have with each other. Spending time together, loving each other, serving each other, and blowing bubbles for Ellie.

If you want to help this family with the unexpected funeral costs and medical expenses there is a great fundraiser going on right now at
There are so many awesome raffle items for local (Utah) and non local people and a way to pay through paypal. All the proceeds will go to this amazing family.