See you in all the beauty

It's been a while. The best of times come when we focus on the moment. Through this, we are discovering the extraordinary in everyday life. We feel sadness at times; missing our Ellie in physical form everyday. By striving to live in the moment, our waves of grief pass quickly and are followed by peace, comfort and pure joy. Ellie exuded happiness and her bright light still shines for us. We are reminded that she is everywhere; in everything that is joyful, peaceful and beautiful.

We see you in all the beauty, baby girl. Always in our hearts. Everywhere we go.

Laguna Beach, California

Nichols Castle Park in Layton, Utah

Bear Lake, Utah

Ellie's Birthday Celebration 2014- At Fernwood Recreation Site, Layton, Utah

Great Salt Lake Bird Refuge

We recently reflected about our little Ellie. In 8 months, she taught us how life should be lived. That every moment counts. That surrender to what is allows freedom and peace. No matter where we are that stillness is within us. That wonder and beauty is always there for us to enjoy. At this moment, we can choose peace, acceptance and love. Ellie did this every moment of everyday.

Our Ethan recently said it so well. "Mom, Ellie never gave up on being happy. Let's always remember that." With the rise and set of each sun and all those beautiful moments in between, we are remembering.

For Ellie on her birthday; June 25, 2015.

One year ago today, you came into this world.
A bright eyed, beautiful baby girl.
Your tiny hands, perfect toes and sweet little cry.
We knew you were special. We didn't know why.
As the days passed, we started to see.
You were in love with life; happy as can be.
Little Ellie, you taught us each day.
To love and to smile. You had a beautiful way.
Although your little body is no longer here, today is a day we will spread your cheer. 

Through tears we will smile, because that's what you'd do.
You gave us so much by just being you. 

  

As always, we thank you for your love and support. Please share Ellie's story and tell someone about SMA today. You can make a difference in memory of our sweet girl through the Gwendolyn Strong Foundation; DonateforEllie.com.

Celebrate

Throughout this journey, we have been surrounded by amazing family and friends. Ellie brought us all together and we've made some wonderful memories.

Our parent's home became a gathering place and our sweet girl is everywhere.

Family joined us from all over the world; Seattle all the way to Japan.

 Ellie's celebration of life took place at the lovely Starks Funeral Parlor.

We let bright balloons go in her memory. She loved balloons.

We have been the recipients of so many acts of love. This quilt was made by some dear friends; one of our many cherished gifts.

Being with family is always healing. We have enjoyed some wonderful times together these last few weeks.

Nature is good for the soul.

Celebrating our love for each other at Bear Lake.

Remembering our sweet girl everywhere we go.

We have learned so much on this journey. One of the most precious things being to celebrate life. These beautiful souls are a perfect example of what that means.

The simplest things in this world are often the most beautiful. The sun rising each morning continually reminds us of our sweet girl. We are taking it all in; enjoying life more than ever. Love you, Ellie. Always in our hearts.

Another heartfelt thank you to all of you who continue to stand by us. You have made this journey so beautiful; and our hearts are so full of love and gratitude for all of you!

Bellsy's last beautiful days

What a beautiful journey we have been given! As you all know, our sweet girl passed away in the early morning hours of February 4th. While her sickness was very scary at times, we also enjoyed some amazing moments with her; filled with the love of all who surrounded us. 

What happened to Ellie?

Along with the Coronavirus and presumed pneumonia, Ellie's left lung collapsed. We almost lost her before deciding to intubate for a second time; giving her the best shot at moving things along and opening her lung back up. After days and days of intensive treatments, we saw little improvement to her lung health. We could continue on with the treatments that our little girl disliked so much for possibly weeks, or we could let nature take it's course. We took Ellie's lead and followed our hearts. No more treatments, just love. It was absolute bliss. 

She enjoyed this treatment so much. Gentle hands and the disco ball sparkling put her to sleep.

She enjoyed many visitors; especially all of her wonderful grandparents, aunts and uncles.

Lots of love from big brother.

A little dress up.

Good talks with Daddy.

The SUPERBOWL! For those of you who don't know, football with Daddy was one of Bellsy's favorite times.

Cuddle time with Mommy.

The last photos I have of our girl are ones exactly like this. The love between these two souls is so incredibly inspiring.

Primary Children's Hospital 

This place is truly amazing! It felt like home and the staff became our family; taking excellent care of not only our precious girl but also my husband and I, Ethan, and the incredible amount of visitors that came to see us. We are forever grateful to all the nurses, doctors, respiratory therapists, housekeepers, etc that played a part in the care of Ellie and our family. Thank you to the Rainbow Kids team, for talking us through our goals for Ellie and being such a huge support. Thank you, Child Life Specialists, for coming up with fun activities for Ethan and cherished gifts for our family.

And thank you to the beautiful musical therapists who wrote and sang this cherished song about Ellie; using our words:

Even in those last precious days, she continued to comfort us all with her wise and beautiful bright eyes. Thank you, Ellie, for giving us so much and filling our hearts with pure love to last a lifetime.

We want you all to know how touched we are by your support and love for us and our sweet girl. We will continue this journey of love throughout our lives in honor of Ellie. Please tell someone you know about her story and SMA. We know we can make a difference together by raising awareness for this disorder. With all of our hearts, we thank you.

Sweet Little Bellsy

Our dear little Ellie passed away early this morning in the arms of her amazing mother. She was the most beautiful person to ever grace our family. Thank you all so very much for your love and support.

Donate

Ellie's Facebook Page

Corona virus

Well, since last Thursday we've been battling sickness. On Friday Bellsy started requiring more support than we could provide so we came to Primary Children's. She quickly deteriorated so we decided to place an endotrachial tube. The tube allowed the vent to breathe for her and permitted her sedative type medication that she can't normally have. It was much needed rest for her. 

She spent Friday through Monday on the tube. The next challenge was extubation. See the risk with placing a tube in SMA Type 1 kiddos is that sometimes you can't take the tube out. At that point, there are not many options. Luckily, she did really well coming off the tube today. More recovery time on bipap and we will be out of here!

The Climb

Our days around here are mostly bright; filled with sunshine smiles from a tiny girl and the laughter of our growing boy. Some days though, are darker. There are days where I find it hard to see through the clouds. The clouds? Fear. Fear for the life of our sweet Ellie. What kind of future will she have? What if we can't save her? Yes, if I allow it, those thoughts do creep in and it feels like our whole world could crash at any moment. Then, beautiful things like this happen...

My boy treks up the mountain with little sister in tow. He is not thinking of how hard this road is going to be or whether or not he can make it to the top. "Ellie is having so much fun, Mom. Look at her face. She loves the trees and I want to show them to her." Wow. What perspective! You are right, son. There is so much beauty right now, in this moment. Right now, there is not a care in the world. Only the bright smiles and enthusiasm of two of the most wonderful, inspiring people I have ever met; our kids.

"We're at the top of the world, Mom!" Right again, little man. And isn't it beautiful! I am so thankful for our son's outlook on life and the joy both of our kids experience in the little things. They are not so little, after all. They are what matter most. No mountain is too high. The journey and beauty along the way make climbing any mountain possible and so worth while. These little things make for such beautiful experiences and I am so grateful.

Everyday Heroes

Ellie has been sick with a virus. Any sickness is an obstacle for SMA babes. She doesn't have the ability to cough. She isn't able to swallow or handle her secretions on her own. Her airways are easily compromised by these things. Yet, she is so strong. Everyday she faces physical challenges but her beautiful, brave spirit never waivers. Her joy for life is never lost. Her smile always shines so brightly. She is a hero.

The little things in our daily life are not so little. My little boy is a big, brave soul. His calm demeanor lends me a hand daily. His love for his sister is so pure and so beautiful. Something I feel so privaledged to witness. He brings me back to the moment; helps me see through the fog. He is 5 years old and he is a hero in my eyes.

My amazing husband takes all of this on in stride. He sails beautifully through the eye of the storm. He keeps the peace and calms my nerves. We are all in excellent hands with him by our side. He is no ordinary man but an everyday hero. 

I am amazed by so much beauty and clarity on this journey. We have witnessed and felt the love of so many everyday heroes. Your helping hands and kind words are giving us strength. We have been inspired to live a life where every moment is precious. Every day is a gift. There is so much peace and power in living for now. It is all we have and it is more than enough. Here's to making every moment count in 2014! 

What's next? You guessed it; our New Years photo overload begins now. :-)

We celebrated the new year in style at the Little America Hotel. A big thank you to my amazing brother, an excellent uncle, for the gift of beautiful, cherished memories!

A little business took place.

Along with a whole lot of fun. Swimming in the winter? You are going to need to complete the outfit with snow boots.

Ellie took her first swim in a pool.

She wasn't thrilled about the temperature of the water.

Swimming in the bath tub is still preferred. With her big brother?  A first and a huge bonus!

We enjoyed lots of visits from grandparents. Big smiles with every one.

Ellie enjoying her view on New Years Eve.

I just love her eyes in this picture! Along with everything else, of course.