The Ronald McDonald Living Room

Primary Children's Hospital. The last place we held our perfect, beautiful baby girl. This picture was taken by my wonderful husband yesterday on the third floor courtyard, across from The Ronald McDonald Living Room. During Ellie's beautiful lifetime, we spent close to 4 weeks at this wonderful hospital. As you can imagine, a whole range of feeling and emotion is tied to this place. We stayed here when Ellie got diagnosed with SMA in October of 2013, when she had her g-tube surgically placed and those last beautiful weeks of her life. 

The Ronald McDonald Living Room is a wonderful retreat for families staying at Primary Children's. It offers comfortable beds, showers, toiletries, a beautiful view of the city, and cozy, relaxing lounging areas. Along with all of that, wonderful meals are brought in by volunteers. This meant so much to my husband and I along with family members. So many cheerful, wonderful people brought delicious meals to make this place feel the most like home you could ask for when being at a hospital. 

Yesterday, we had the opportunity to provide one of those meals as a family. It felt hard for a few moments, being back at the place where our sweet girl left us all those months ago. The picture above so perfectly shows that underneath it all is joy. Giving a little extra love to those parents and family members who bravely wear similar shoes to those we have walked in is such an amazing and healing experience. 

Had it not been for our beautiful Bellsy, we may never have come to know such love and joy. We may never have realized what putting a little extra change in those machines at McDonalds can mean to so many people. As we left the hospital back in October of 2013 with Ellie's diagnosis, my husband looked at me and said "I always wondered what I would be able to teach our little girl. Turns out, she will be teaching me instead." What a wonderful, beautiful world you have opened our eyes to see, Ellie. #seeyouinallthebeauty

What a snowy day means to us

Today's snowfall reminds me of the last I remember experiencing. Just like today, it fell so gently, delicately and beautifully. On that February morning, after giving you one last kiss, the sky was white and filled with the most beautiful snowflakes. It was a peaceful, sweet reminder of how you came into and left this world, Ellie. I miss you. The beauty you taught us to see keeps you close and in our hearts, always. I am so thankful for the privilege of being your mom.

Bellsy all decked out for Thanksgiving last year.

Speaking of motherhood and it's joys, Ethan. He has always loved the snow. This morning proved to be no different. We talked about the weather man's prediction yesterday. First thing this morning, he opened the door and shouted joyously "Mom it's snowing!" How I love that little voice, especially when he's excited. He is growing so fast. Our first grader is learning to read and write. He uses his new found skill of writing to leave me little notes of love. He idolizes his wonderful father and they have recently shared a love for rough housing, baseball and chess. It is so wonderful to see their bond. I am so thankful for this special boy.

This morning as I dropped him off to school.

We recently found out that the human growing inside me is a boy, too. He is moving all over the place now, letting me know he is strong. What an amazing feeling! I can't help but tear up every time I see his sweet little head and body on an ultrasound. His little hands and feet. All curled up and snug as a bug in my growing tummy. I wonder if he will share a love of snow with his big brother and sister.

The day our new baby boy was confirmed; 21 week "bumpie".

On this, the first snowy day of the season, my eyes have been filled with tears of remembrance and joy. My heart is full of gratitude. I am thankful for a loving and supportive husband. Thankful for Ethan, and a growing new baby boy. Thankful for wonderful family members and friends who are always there for us. And on this day, the beginning of a new season, I am so thankful for the light sweet Ellie continues to bring into our lives. A new season and a new blanket of freshly fallen snow. #seeyouinallthebeauty

The Peace that comes with NOW

"The Power of Now", by Eckhart Tolle. I read this book several years ago and have since practiced Eckhart's teachings as often as I remember. Along with the love and support of many, these teachings have had a most powerful impact, especially recently.

When faced with Ellie's diagnosis, The Power of Now really hit home. While she was here, when we focused on each precious moment, we enjoyed the most beautiful, loving experiences. Now that we travel this path without her, focus on the moment continues to bring beautiful experiences. Darkness creeps in at times. The voice inside my head tells me "This is not how it should be." It feels heavy and hopeless. Practicing the power of now takes that heaviness away. I have found peace and an ability to live and love life through acceptance of what is. The following quote, by Eckhart, brings to light how unhappiness is created and the freedom that comes from truly accepting things as they are; right NOW:

"Nothing lasts in this dimension where moth and rust consume. Either it ends or changes, or it may undergo a polarity shift: The same condition that was good yesterday or last year has suddenly or gradually turned into bad. The same condition that made you happy then makes you unhappy. Or a condition disappears, so it's absence makes you unhappy.

The prosperity of today becomes the empty consumerism of tomorrow. The happy wedding or honeymoon become the unhappy divorce or the unhappy coexistence. 

When a condition or situation that the mind has attached itself to and identified with changes or disappears, the mind cannot accept it. It will cling to the disappearing condition and resist the change. It is almost as if a limb is being torn off your body.

This means that your happiness and unhappiness are in fact one. Only the illusion of time separates them. 

TO OFFER NO RESISTANCE TO LIFE is to be in a state of grace, ease and lightness. This state is then no longer dependent upon things being in a certain way, good or bad." 

Children have a special way of taking us to the present moment. They are happy and content with what is; giving smiles freely and enjoying life's most simple pleasures. This carefree ease and lightness exists within all of us. Stillness and inner peace come naturally when we choose to be aware and present; to turn that voice in our heads OFF. There is so much to smile about and be grateful for; NOW. So take that deep breath, feel the sunshine on your face and the cool breeze in your hair, dance in the rain. Take it all in. Enjoy being where you are right now, in this moment.

Beings of nature bring peace to the soul.

To be truly present allows for wonder and awe. An ability to see things in a new light.

Our natural state is one of joy.

Learn to dance in the rain...

And look for those rainbows.

Smile because it happened. We smile when we remember you, sweet Ellie. Always in our hearts.

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.

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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.