Saturday, May 13, 2017

Ray of sunshine

Cicily's farewell was absolutely beautiful today.  It was perfectly Cicily.  Thank you to all who came and helped make it perfect.  

 Drove past her body's resting place and took some pictures.  Check out that beautiful ray of sunshine.  Cicily is still spreading her light.  

Friday, May 12, 2017

She's not just yours

When Cicily was born she stayed in the NICU at the hospital for a few weeks.  While she was there I greatly disliked having a nurse tell me how best to comfort her (I've since silently thanked said nurse as her tip was helpful for Cicily's whole life) and I refused to wear gloves to hold her.  Cicily was MY baby and I was her Mom.  While I greatly appreciated the medical care she was getting, I did not appreciate that she needed care from anyone besides me.  While I was sitting by her bedside one day I had the distinct, undeniable feeling of the words, "she's not just yours".  Feeling these words did not make me recoil with deep annoyance like they should have, they came with a peace and understanding.  Heavenly Father was letting me know from the very beginning that Cicily was on this earth to be shared with others.  I was not the only woman in her life that would care for her, love her and learn from her.
So tonight I would like to acknowledge, pay tribute and show appreciation for all the people in Cicily's life who she came to be here with.  Our family has great love for all the nurses who cared for Cicily in our home.  We especially appreciate her besties (the long-termers) Kelly, Michelle, Ashli and Joy.  You all enriched Cicily's life in unique ways.  It was by divine design that each of you came into Cicily's life.
Tamara has been Cicily's school nurse for the past 8 years.  She started school with Cicily in preschool and continued to care for her, teach her, love her, and advocate for her the next 8 years.  We consider Tamara to be a 3rd grandma to Cicily.  And she has promised not to stop calling me as she has done every day Cicily went to school to give me a recap so I knew what to talk to Cicily about.
We love Cicily's teachers beginning when Cicily was a baby and JuLee (and her family) came into our lives to teach us sign language.  Then Cis went to preschool and had a wonderful teacher and aides.  Then Kindergarten and 1st grade where she had a master teacher who could whip out accomodations like most of us blink.  3rd grade where Cicily had a teacher so impressed with how well Cicily learned and worked hard to add on to her knowledge.  Then 4th grade where Cicily had not only an amazingly loving and inclusive teacher, but a whole school family.  A school family where kids from other classes said hi to her in the halls instead of staring, where she had a gaggle of girls hanging out with her and talking with her at recess, where she had friends who loved her because they understood and appreciated her.  Where she had a sped teacher who loved her and helped her play pranks and a principal who gave her a hard time about socks and cruised her around campus in a swing.
We thank the therapists who worked with Cicily and helped keep her strong and active.  Cicily loves so many of you for making hard work fun.
We respect and honor the doctors, assistants, staff, social workers, nurses, and hospital workers whose expertise and caring truly gave Cicily the best chances for a great life.  I really will miss waiting in your rooms and throwing around medical jargon with you.
We love our church congregation family who have learned with Cicily and been taught by her smile.  And who have allowed us to serve and and to be served and cared for.  We will forever adore you for giving us the gift of time with Cicily this past month.  Charity never faileth.
I have love for those strangers who smiled at Cicily or gave her extra attention.
And for all who have read this blog over the years for allowing me to share my Cicily with the world.  It may be a small audience, but it truly has covered the world.  And that makes my heart happy to know that Cicily's influence and love have been felt and shared and made the world a little brighter.

The last breath

I realized after telling some dear friends about Cicily's last day on earth, that I never shared it here.  It was the kind of day Cicily loved.  We went over to her Grandma DeEtte and Grandpa Courtney's house (We put ours up on the market to sell that day, I know worst timing ever, but things have just fallen into place even in the midst of the worst timing ever.)  Cousins were in town and Grandpa spent a couple hours being the tickle monster and making the house ring with little laughter because he knew Cicily loved it.  And it kept the mood nice and light and loving, something we all appreciated.  In the early afternoon I asked Chris to help me take Cicily upstairs to hang out in Grandma and Grandpa's bedroom where we could have more privacy as her breaths were more and more shallow and less and less frequent (not that a breath every 10-15 seconds is frequent).  In the next few hours, Cicily got to spend time holding her best cousin Lily's hand, listening to Maya practice a history presentation, and snuggling with family.  After spending an entire week at home, it was just the kind of idyllic day Cicily loved.  When it was dinnertime Chris went downstairs to help Maya and Sophie get dinner with everyone.  Grandma listened to Cicily's heart (grandmas were the breath counters all week :) ) and could barely hear it.  They were able to have a sweet moment and then Grandma went to get some food for me.  (What a beautiful thing to have a grandma who is caring for her daughter who is caring for her daughter.)  After Grandma left, Cicily didn't really breath for a while.  I ran to ask Chris to come upstairs.  He came and I looked at him and we both cried and hugged Cis.  Then she took a big breath and we had to laugh at her little joke.  But, we knew it was time and Chris went to ask Maya and Sophie to come upstairs.   Fortunately they were very obedient and hurried upstairs.  They were able to say bye to their Cis and then she took one more breath.
For the next several minutes we hugged and kissed our Cicily's dear body and cried (and yes in some cases, even farted) together.  Then we invited all the cousins and aunts and uncles and Grandma Sue and Grandpa Norm (who's had the BEST perspective on having his granddaughter die on his birthday!) and nurse Tamara to come in and love and hug and cry.  It was heartwrenching, and grief filled and sad, but also full of love and concern and charity.

Monday, May 8, 2017

A REALLY good 10 years

So I'm going through pictures of Cicily's life to have a video made.  It is making my heart very happy to see this smiling face living life.  It's a cliche country song to say she lived like she was dying, but when you have so many surgeries and find out you have a terminal condition, you focus a lot on living and living good.  Cicily really did live life and have every opportunity through her struggles to really enjoy her life.  
So I thought you all who loved her and have followed her adventures, might like a random sampling of Cicily's really good 10 years in a few pictures.  Enjoy!


We will be having Cicily's funeral services Saturday May 13 at 11 with a viewing from 9-10:30. LDS church at 1430 N. Recker Rd. Mesa, AZ. We would love to have everyone that wants to come.  We will be keeping the services to under an hour and very child friendly.

Saturday, May 6, 2017

May 6, 2017

I just did what I hope to be the most difficult thing I will ever do in my life.  I said goodbye to my Cicily's amazing body that has housed her powerful, courageous spirit for over 10 years.

A few hours before that, Cicily took her final mortal breath.  In impressively Cicily style, she waited patiently and gracefully until Mom, Dad, Maya and Sophie were all gathered around her before she finally let go.


I've learned to greatly appreciate breaths being Cicily's Mom. I wish you all could see the tiny little breaths this girl is living on.  She's amazing. And I'm haunted knowing one of these bitty breaths will be her last.
I'll cherish this week I've had to snuggle my Cicily non stop.

Friday, May 5, 2017

And who would want to leave all this...

 Mommy reading books and being really good at knowing what I need. 

 My little sister brushing my teeth, putting eye drops in my eyes and helping me like I used to help her when she was a baby.

My big sister singing to me and spending time with me.  

And of course the most loving, entertaining Dad in the world.

Still here

Officially one week without food or water.  Getting more sleepy, but still attempting to sign a few times a day.

Wednesday, May 3, 2017

Heart of a lion

Cicily had a sleepier day today than yesterday.  She slept in until 10 am and then on and off again until noon.  While we were snuggling in our chair she made concerted efforts to sign.  As she didn't have the energy required to make a complete sign, I would tell her what her sisters were up to, get Lucy for a belly scratch or get books to read (as those are the most likely sign candidates).
Her breathing is still achingly slow, but apparently with the brave heart she has, 4-5 breaths a minute is all she needs.

Tuesday, May 2, 2017

Vigiling aint easy

I know many are checking continuously on Cicily, so I wanted to put something up here.  Truth is she's still breathing really slowly.  Sat in the chair all day today.  Had some great company.  She made a huge effort today to ask for something so we read books.  Then she asked for Sophie and Maya in turn tonight.
I think our little girl has just been so determined and fought so hard her whole life she doesn't even know how to let go.


 Didn't think you could survive long on 6 breaths/minute, but apparently Cicily can.  

Maybe she just needed one more book with Grandma?  Or one more joke with Dad?  Or one more snuggle with Mom?  Or one more fart joke from Soph?  Or one more story from Maya?
Don't worry, we've told her she can let go anytime.  We know her next life will be beautiful.  I can only imagine if she can do so much here without speaking, how much she'll be able to do to spread the love of Christ with a voice.

Monday, May 1, 2017


Us girls got to spend all day snuggling and being taken care of by our Mom and Grandma.  Beautiful and heartbreaking.

Cicily is down to only 6-7 precious breaths per minute.  Last night was 9.