My Name is Sarah

MY NAME IS SARAH. I am a quilt designer and the sewcial director of Sarah's Sewcial Lounge. I also have a business called Down Right Charming. I sell my quilts mostly on etsy and I make pillowcases to donate to patients in the hospital in memory of my friend Kristen Kirton. I am a young adult living with Down syndrome. I hope you enjoy reading about my life journey.

Friday, January 8, 2010

A box full of Love and Emotion

a note from mom: As I walked into the house, I had my camera ready. I just knew from the enthusiasm in her voice when she called me, that Sarah would be waiting. Sure enough. She was actually pacing in the foyer. She was indeed excited.

One look at this beautiful blanket and I could see why. I did have knowledge that a blanket would be arriving as Lacey, the incredible mom who makes them, had emailed for our address. I'm not sure that I gave it much thought at the time, therefore I did not have any preconceived expectations. As I stood there looking at this blanket, a wave of emotions flooded my soul.

Sarah and I have been following Jaxson's blog for a long time. I know of the significant medical challenges he has endured. I know that Lacey recently struggled with the difficult decision of whether or not to allow the doctors to place a trach in Jaxson's delicate airway. I recall that same struggle. Once the trach was in place, she has been sharing the added stress it places on the family. The sleepless nights. The worry. The additional medical demands. I know first hand what that is like, too. It is physically and mentally exhausting.

And yet here is my daughter proudly holding a blanket that is so much about her. If you have been following our blog you know that Sarah loves horses. She and her therapeutic horse, Ridge, have a special bond. If you have been paying close attention you know that Ridge wears purple. His blanket and bridle are purple. At Sarah's graduation party, the volunteers braided purple ribbons in his mane and tale. The fact that Lacey took the time to search out this perfect fabric, just for Sarah, has tears rolling down my cheeks.

Sarah wants me to read her the note. I can barely see through my watery eyes but I manage to stumble out the words. Then I just stared at the picture. For the longest time, I just stood there


and absorbed this sweet, precious boy. Sarah told me on the phone that he had "that thing in his nose" like her. I walked over to the cupboard with the photo albums. She's correct...

...this photo of Sarah was taken the day she was moved to Step Down following her open heart surgery. It is the first picture we have, as the Cleveland Clinic would not permit photos to be taken back then in the ICU. It was exactly one month from the date they wheeled her into the operating room. Many complications, and a few close calls kept us in ICU. Looking at this picture, brings those memories into crystal clear focus. And with those memories, I am all the more touched by Lacey's gesture of love. Thank you dear friend.

14 comments:

Carol N. said...

Wow - that's amazing! What an incredible gift for Sarah, and what sweet pictures!

Mel said...

Wow. Two beautiful babies, two amazing mothers :)

Denise said...

We are blessed enough to have a Jaxson blankie too and it is a treasure to us. Ella sleeps with it every night. Sarah...I love your blanket. Purple with horses is just perfect. And way to go with calling your mom on her cell phone.

Michelle said...

Lacy and Jax are two angels on this earth and how blessed we are to have both in our lives. The blanket is perfect!

Adelaide Dupont said...

A trach is indeed a BIG decision.

Great to see the picture of Jaxon and Sarah as a baby.

It was "a box of love and emotion", as you say in your title.

And horses themselves need blankets in the winter time, don't they?

Heather said...

Our blanket came as Zoey was battling leukemia ... Jaxs' picture placed on the underside, reminded us that we were not alone.You and Sarah are daily reminders,that we are not alone.All of us in this beautiful community,across the country,across many a oceans ... we are not alone.Woven together.A common thread.Lacey and Jax spreading the love.We are all blessed.

Karen said...

I love this community that we have found ourselves in. The love shared between families that have never met never ceases to amaze me.

stephanie said...

Lacey is one of the most amazing people I have met here in "blogland".
Sarah your blanket is just beautiful and as always with Lacey ... perfect.

Ellen said...

How amazing. And, of course, Max would think that blanket is absolutely fantastic, as his purple obsession has not weakened one bit. No sirrreeeee.

Lacey said...

Your so welcome. Thank you, for all your advice on the trach, and helping us moms with young DS kids as we travel the road you've already traveled. It took me a long time to find good material that wasn't boyish and just plain ugly. When I found the material I squealed in delight.(the people around me thought I was crazy) I knew it would be perfect!

Kim said...

Very nice! Lacey is an amazing woman as you are too! And two beautiful children as well~what a blessing!

Cammie Heflin said...

I agree, Lacey and Jax are amazing! Addy has a Jax blankie too, it's all Addy, purple with fairies on it!

ABandCsMom said...

Awesome! I can just imagine how excited Sarah was. How touching this was for you, gives me chills.

The VW's said...

Lacey and Jax are awesome!!! Enjoy your blanket Sarah!