Being an SMA dad by Kale Stevenson

When my friends, dads themselves often times, first hear about little Ellie there are a few typical responses; "I'm so sorry" "I can't even imagine..." "How do you deal with something like that?" Basically, a flurry of questions that don't have easy answers. In the first few weeks these thoughts relentlessly haunted me. 

Ever since October 29, 2013 I've been determined to answer these questions. How do I give this little girl the best life she can have? How do I suppress my sorrow so I don't contaminate her happiness? How do we keep our family strong in the face of such a horrific diagnosis? 

In spite of daunting circumstances a few aspects bring me great peace. First, Ellie couldn't have a better Mother. Kate was born to be a fantastic mother and shines under the enormous challenge of caring for an SMA baby. Second, Ellie has a very loving and compassionate brother. Third, we have an exceptional support network consisting of family, friends, doctors, nurses, neighbors, employers, etc. We are forever grateful for all you've done for us.

I've always considered myself a lucky man. From my beautiful wife and awesome kids to all my friends and family. I'm extraordinarily fortunate. Ellie is no exception. She has brought us nothing but love, beauty and joy. She's taught me more about myself than I ever thought possible. If Ellie were to leave us and my family were to fall to pieces that would be on us, not her. She's only ever brought us love and joy.

So here is how I cope with 'all of it'... I lean on my wife. My wife leans on me. We take advantage of the support offered. We're not afraid to ask for help. We enjoy every day. We give back. We learn, love, hold, kiss and be inspired. We enjoy the clarity and keep the perspective. 

Most of all we enjoy our beautiful little angel every single day. Her pure love is all we need. What else matters?

Celebrating the Season

We have had such a wonderful time celebrating this year! Lots of quality family time has been spent and lovely memories made that we will cherish for a lifetime. Picture overload of our Christmas begins now. :-)

Right before Christmas, we got a great snow storm. Daddy and E built this awesome snow fort.

Grandpa had a special celebration at his house the weekend before Christmas. Tamales were delicious and the company was even better!

 

We went to see great, great Grandma Mel on Christmas Eve. What a special visit!

 

Then off to Grandma and Grandpa D's we went. Lots of fun and laughter.

In honor of Ellie, we donated and gave family members NEVER GIVE UP apparel from the Gwendolyn Strong Foundation.

In their new Christmas pj's. Ready for Santa!

Santa came!

A special gift from Daddy.

Grandma and Grandpa came to visit.

Last but not least, we enjoyed dinner at Grandma Lizzy and Grandpa Dane's house.

Christmas was made extra special by this little girl. We celebrated her half birthday! She is so loved and we are so very lucky to have her!

Her first candy cane.

Thank you for stopping by and continuing on our journey with us. Your support means so much. Tell someone you know about this blog or Ellie's story today. As always, we send all our love and appreciation.

In our Hearts

Today and everyday, Gram lives in our hearts. She lived a beautiful life and passed away in May of pancreatic cancer; 6 months after being diagnosed. She inspired us all in so many ways. She taught us to enjoy the moment, forgive and to love unconditionally.

This time of year was always made special by our dear Gram. We are thinking of and celebrating you today. Remembering your gentle voice and warm smile. Your delicate hugs filled with love. The way you welcomed us with open arms. Your decorating and amazing taste, the wonderful smells of your kitchen and beautiful table settings. Your laughter.

As I sit here with a smile and tears in my eyes, I realize just how happy she made all of us. We live and love to the fullest in honor of you, sweet Gram. We cherish every moment together. Thank you for the beautiful memories. You are always in our hearts.

Grandma and Grandpa's Christmas cottage, Christmas Eve 2012.

One of E's favorite things to do with Gram was read. She always had time to cuddle up with him.

Gram loved all of our babies. She had a magic touch. This is baby Emery, Ethan and Ellie's cousin.

All of us together, February 2013. Even baby Ellie is in my tummy. :-)

A little Christmas Magic

Grandma Lizzy knows Santa! Somehow, she was able to arrange a special visit to our house last weekend. There is nothing like seeing your child light up with joy seeing this sweet spirited man.

This time of year is always special. A lot of cozy nights at home sitting around the Christmas tree. Story telling, watching the snow fall, Christmas lights, and lots of time with family. Christmas fills every heart with love and joy. It is magical, just like Santa. We believe in the spirit of Christmas, do you?

We also had a Christmas family photo shoot that day, thanks to our wonderful neighbors. Enjoy a sneak preview:

We want to wish everyone a very Merry Christmas. Lots of love and warm wishes from our family to yours!

The Season for Giving

NEVER GIVE UP. It's the mission of The Gwendolyn Strong Foundation, or GSF. This wonderful 501(c)(3) non-profit charity it dedicated to increasing awareness of Spinal Muscular Atrophy (SMA), accelerating research focused on ending this disease, and supporting families impacted by SMA and other life-altering conditions. The GSF is an all volunteer organization. 100% of donations goes toward fulfilling the mission.

You can help end SMA by donating to GSF or another of the following organizations. You can make a difference! Join Ethan and Ellie and NEVER GIVE UP.

www.thegsf.org
facebook.com/endsma
fsma.org
fightsma.org
http://www.sophiascure.org/donate
The Getty Owl Foundation

Another wonderful cause we have experienced first hand is Jacey's Journey. Beautiful Jacey, also living with SMA, inspired her parents to create "Arms for Angels", a device to help SMA babies and kids have full range of motion by reducing the weight of their limbs. I promise you will be truly inspired by Jacey and the amazing work she and her parents are doing. Check it out:

https://www.facebook.com/JaceysJourney
jaceysjourney.com

As always, thank-you for all of your love and support and for following Ellie's story. Tell someone you know about SMA today! Help us end it!

Cold weather and colds

Today our beautiful girl touched snow for the first time. Who's idea was this? You guessed it, the biggest snow enthusiast I have ever met; her big brother! I am not sure she is so enthusiastic, but this is a must moment nonetheless.

Other news: We have our first cold since diagnosis. :-( Good news is, we have a bi pap machine to help Ellie breathe a little better. This is what it looks like:

Yes, you do see a smile under the mask.

We are patiently waiting for our daddy to return from an overnight business trip. Ellie can't wait for more hugs and cuddles from him.

Meanwhile, we are enjoying lots of snuggles and keeping our Bellsy warm and cozy inside today.We hope you're enjoying this snow day too!

Grandma Lizzy singing Christmas songs and cuddling.

If you enjoyed this post, remember to tell someone you know about Ellie's story and SMA today. Help us spread the word! And as always, thank you for your love, support and following our journey.

A brother's love

My son Ethan, 5 years old, has so much love for his little sister. He shows it daily in many ways and sometimes I'm lucky enough capture these precious moments. I am one lucky mom!

Life Lesson #3- SMILE

On November 19, 2013, we opted for G-tube surgery. This moved Ellie's feeding tube directly to her stomach as opposed to through her nose and throat. Our girl smiled everyday in the hospital, even though she went through alot.

This smile melts our hearts.

When we came home, we celebrated Ellie's 5 month birthday and her first Thanksgiving.

November 25, 2013: 5 months old!

Thanksgiving at Grandma and Grandpa D's.

We might as well throw in a cute outfit shot. Why not?

Life Lesson #2- Live in the moment

Our focus has forever been changed. This situation has brought us to the present moment. We enjoy each of these cherished moments with all of our hearts. WARNING: Another photo overload follows.

LIVE

 

LAUGH

LOVE