A letter to our baby girl

A letter to our baby girl on the day of her celebration of life:

January 21, 2015
Dear Khloë,

On the day you entered the world, your Daddy and I became the happiest people on earth. We were given a perfect little girl. We knew we would do anything for you, no matter what. You already had us wrapped around your finger. Watching you grow from a teeny baby into a toddler has been a privilege.

Our favourite part of the day was waking up and going into your room to be greeted by a big smile. You knew that we were there to give you a kiss and bring you out to the living room to play. And did you ever like to play! It didn’t matter that your body was weak; you still found a way to stuff Sharkie in your mouth, toss your Do Not Enter sign on the floor so we had to pick it up over and over again, or play xylophone and strum the guitar with Daddy. The look in your blue eyes whenever you discovered something new was priceless.

You were one lucky girl, let me tell you!

Khloë, you were the strongest little person we knew. You fought a terrible disease every single day, but didn’t let it get you down.

We have so many wonderful memories of you, Sweet Pea: your first laugh, dressing you up for photo shoots, playing peek-a-boo under a blanket, swimming in the tub, camping in Bar Harbor, and the first time you said “a-bah a-bah” which sounded suspiciously like a chicken bawking.

Daddy and I will never forget the light you brought to our lives. Today we celebrate your beautiful life.

Hugs and kisses,
Momma and Dadda

Khloë: Forever 13 months old

It is with a heavy heart that I make this post… On January 16th, our sweet girl lost her fight with Spinal Muscular Atrophy.


December 3, 2013 - January 16, 2015
December 3, 2013 – January 16, 2015

We are heartbroken.

Khloë was hospitalized on January 12th with aspiration pneumonia and a collapsed lung. She passed away from complications from these issues. Her body was too weak. Jordan and I, as well as close friends and family, were with her to the very end.

We love you, Sweet Pea.

I will add missing journal entries when I feel that I am able to.

Khloë: 12 months old (52 weeks)

Here is Khloë’s final Hello Kitty photo!


52 weeks (December 2)
52 weeks (December 2)

She turned 1 year old on Wednesday! How amazing is that? We officially have a toddler! Jordan and I have gone through such a whirlwind these past six months that it is such a relief for Khloë to reach this milestone. We love our baby girl so much and only want her to be healthy and happy… She is always happy and right now she is as healthy as she can be.

We didn’t do anything special on her actual birthday, which was the 3rd, because we have a birthday party planned for the upcoming weekend. Khloë was very junky-sounding for the majority of the day so we spent our time playing with her toys and singing nursery rhymes in between rounds of coughs, chest PT, and suctioning.


Eggs make great toys

On Friday my family arrived. The house instantly became chaotic but it was great to see everyone. We’ve had to cancel trips back home too many times! Khloë was a bit overwhelmed at first, but after a good nap she welcomed all the extra attention. In the afternoon, Michelle and two of her children came over for a quick visit since she wouldn’t be able to make it to the party. She made beautiful Frozen-themed cake pops! The evening was spent working on decorations and goodie bags.

The birthday party guests on Saturday consisted of my mom, two sisters and their significant others, my nephew, cousin, Ryan & Stacey and their girls. We had invited two other families but both had to cancel due to illness. We had so much food since we had planned for more people. Khloë ended up taking a nap during the majority of her party and while she was sleeping we all played Pin the Nose on Olaf. Ashe loved being reunited with his cousin and it was so cute watching him play with her.


Ashe playing with his cousin

Sweetness

Ashe loves his cousin!

Recently I’ve had to pack up a box of Khloë’s clothes. She currently wears 12-18 month or 18 month shirts, pants, and dresses. We measured her at home and she was 30 inches long! Diapers I have switched to size 4 Pampers.

You're just as sane as I am. — Luna Lovegood (H.P.)