Cicily's book

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Shutterfly gave us the most amazing gift when Cicily was on hospice.  They allowed us to make wonderful framed pictures, pillows, plates, canvas and jewelry with pictures of Cicily to fill our house with memories of our smiling girl.  They also gave us free photo books to share with her cousins.  So I made this book about Cicily for them to order.  I imagine it being read to her young cousins who weren't quite old enough to remember her in life or families reading together to reminisce.  And someday I'd like to read it to Cicily's future nieces and nephews so they can know all about their amazing aunt.  I know there are many more people who love her than just her family, so I wanted to share on here as well.  Forgive me if you are a special part of her life and are not included in the book as my focus was family for this project.  

Thank you so much Shutterfly for your legacy gift to us.  We will certainly be life-long customers and supporters of your great, compassionate company!  

With great gratitude

I wanted to put a shout out there to all the amazing people who have done something for our family while Cicily was sick and after she died.  

We have been the humble recipients of dinners, foot massages, homemade pillows, flowers, paintings, sculptures, and more.  Each and every gift and gesture of love and compassion has meant so much to us and truly lifted our heavy hearts.  Thank you, thank you to all who have blessed our lives these past months.  

We have most especially appreciated every one of you who has participated in the power of prayer on our behalf.  We cannot deny the immense power and comfort that your prayers have blessed us with.  There is no earthly reason that accounts for being filled with grief at not being able to make Cicily smile; but still being able to find joy in life.  I know the joy we've found is possible because of so many prayers and the Holy Ghost comforting our hearts.  And so many friends mourning with us and sending us love and positive thoughts.  It has been truly amazing to feel of the very real power of comfort from prayer and love.  

Thank you to you who have prayed for us.

Thank you to you who have shared gifts with us. 

Thank you to you who have fed us.

Thank you to you who have cried with us.

Thank you to you who have asked us about Cicily.

Thank you to you who have listened to us talk.

Thank you to you who have shared Cicily stories with us.

Your acts of love have carried us.  

Why we say "died" instead of "passed away"

We may sound a bit harsh or nonchalant when we talk about Cicily dying in our family.  There are reasons for this I'd like to explain.
A couple weeks after Cis died I was talking to Sophie and happened to say in the conversation "the night Cicily passed away".  Sophie looked at me with her perturbed/serious look and said, "you can just say died Mom.  Cicily's not past.  She just died is all." I had to agree with Sophie's logic.  Cicily dying is something we've known would happen and something we've always been very open about in our family.  To Sophie dying is just another part of life.  A new chapter.  It's doesn't mean someone is "past" or "away" so to speak, it just means they're in another life where unfortunately we don't get to hang out.  So while it may not sound as polite or graceful to say "died", in our family that's what we say.
A friend of ours left this on my FB wall.  I thought it perfectly captures our family's feelings.  It's by Henry Scott Holland .

We love talking about Cicily and love it when friends talk with us about her.  Especially when it's easy, with "no forced air of solemnity or sorrow".  It was a difficult task when she had recently died.  We had to have a family discussion about the more we talk about Cicily in every day conversation, the more normal it will feel.  

So while we all miss her a ridiculous amount, and I in particular cry daily about it, we still like to talk about her and think about her as we always have.  

Recording of Cicily's services of remembrance

We got the recording of Cicily's funeral yesterday.  It's just over an hour long.  An hour very well spent!  It's perfectly Cicily - upbeat, happy and inspiring.  I know you're doubting because it's a funeral.  But it was important for us to honor Cicily in the way that she lived with laughter and love.  Enjoy!
 

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.  

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.

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!

Funeral

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.

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.

Breathing

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.

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.

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.

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.

Tuesday

 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.

Vigil

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.

Still hanging on

our girlie is still hanging on. She's had slowed labored breathing since last night.
She appreciated everyone who came by yesterday. And was mostly awake but too sleepy to smile.
This morning she let me know she's ready to go. A huge comfort to an aching mommy's heart.
She was awake all afternoon looking at family memory books with all of us. And doing lots of "smiling on the inside" as Maya calls it.
She signed the only sign I've seen from her in days. It was "Maya".

Visiting hours 2-4

We're thinking this may be our last day with our Cicily.  We know many people want to visit and we want everyone to be able to come who wants to.  Cicily would want to pass on her love to all who love her.  So we've decided to set up some visiting hours.  You are welcome to come to our home today between 2-4 for a quick visit.  We can't promise Cicily will be awake, but that's been a good time for her the past few days.  She had a peaceful night and is still sleeping.  We'd love to see whoever wants to come.  Call, text, email (janalyn at gmail) if you need an address.

Friday - We're down to days with our girl

This morning we had a home visit from the hospice team (dr, nurse, social worker, resident dr).  Home visits are awesome.  Hospice is awesome.  

The doctor confirmed what we had suspected.  Cicily's new symptoms are not just bad days they are end of days.  After examining Cicily and hearing our report of the past week, she gave us the news.  The food and water (TPN) Cicily has been getting through her IV is not being used by her body.  It's seeping out of her veins and into her stomach, lungs, abdomen, etc.  Essentially, continuing to feed her is doing more harm than good.  We could choose to continue her food or stop it, but the result would be the same.  Her body has been amazing.  Doing so well with its incredible limitations.  Her spirit is even more amazing.  But, her body is just done.  It can't function well enough to keep her spirit living in it much longer.  So, Chris and I made the awful and heartwrenching; but also simple and peaceful decision to disconnect Cicily's TPN this morning.  The dr said she could be with us for a few more hours, days or weeks.  Our best feeling is we have a day to three more with our girl. 

 So Daddy and Mom snuggled and cried and talked with Cis about what was going on.  We asked her if she was ok with stopping the TPN.  She couldn't bring herself to say yes or no.  That's ok.  Even the most wise 10 year olds need parents to make the tough choices.

 Then we brought Maya and Sophie (They had been playing Legos together in Maya's room.  I hope this nice togetherness will last after Cis goes.  They'll need each other.) in to tell them the news.  We had some lovely family time.  Crying, talking about how much we'll miss Cicily, hugging, talking about what Cicily will be doing in the spirit world, and making fart jokes.

 Then visitors came, and more visitors, and more and more.  Cicily LOVED it.  Except at the end she got exhausted and still loved everyone coming, but with less smiles.  This is Maya's bestie since they were 2 playing Maya's ukulele with Cis.

 And while cousins were here, a chicken got plopped on Cicily's lap by Sophie.  (I think she was shocked when I told her she could do it.)  

 Then we had a little more family time.  A spontaneous Small World dance and song was performed and enjoyed.  

And in the midst of it all, I learned how to give IV morphine.  Now Cicily's on a morphine drip, with doses of lorazepam (anti-anxiety, end of life med).  Hopefully she can be comfortable but still conscious enough to enjoy her last couple days on this earth.

Thursday

 Dying's not all fun and games, even for Cis.  Sometimes it hurts and is very sad. 

 Cicily's nurse Tamara came to visit today.  She brought Cis a gummy bear keychain.  Gummy bears are their class' "thing".  Her teacher came later with an armful of sweet cards from her friends in class.  They miss her smile.

 Cis was asking for her buddy Lucy a lot today.  Lucy was happy to oblige for some belly scratches.

 Grandma got a hug/headlock

 Maya got a big laugh dancing Lucy on Cis' belly.

Maya helped Cicily read her cards. Cis loved the cards and her Maya time.

For most of the morning Cicily was pretty upset.  She brightened up completely when her sisters came home.  We mostly all hung out on the bed this afternoon and played.

Wednesday

 Maya laid down on the bed by Cicily after she got home from school.  I'm glad I caught a picture of this sweet moment.  I often miss capturing Maya's sweet quiet moments with Cicily.

Cis was going sans- clothing again today so it was harder to take pictures.  Plus, she wasn't very happy so adorable smiley pictures would have been hard to come by.  Here's a sweet moment with her doggy Lucy though.  (I love the Sophie photo bomb.)  Lucy was the only thing she asked for today and it was the first smile I saw when I got Lucy up on the bed to give Cicily "kisses for Cisses".
Cicily woke up at 4 am needing meds.  She stayed awake sad and fitful until 6.  Then she feel asleep and slept peacefully until noon.  Then she woke up crying and I gave her more meds.  She stayed in bed for the rest of the afternoon.  Playing and reading with Mom, Lucy, Sophie and Maya.  She was fairly "out of it" for the most part today.  Dad and I took turns holding her in the green chair tonight and eating dinner.  Then she was ready for bed by 6 pm.  We're starting to think this is looking like a new normal instead of a string of bad days.  But the next few days will tell.

Tuesday

We had an appointment this morning so I got Cicily her sponge bath, dressed and in her chair ready to go.  She cried the whole time.  I felt awful.  It reinforced why hospice is so amazing in not making people go anywhere, they deliver meds, make house calls, etc.  I can't say enough good things about hospice so far.  Cicily was good once we got out in the car (though that may be due to me giving her morphine and lorazepam) and the appointment was quick.  When we got home she just wanted to lay in bed (and have her clothes off which she laughed about - hey whatever makes a dying girl comfortable I say).  We listened to music, and played swipe the ipod games.  She took a tiny nap.  She was legit happy laying in bed all day.  As we were playing and laughing, I said Cis what am I going to do without you.  She looked a bit concerned.  I just couldn't think of any positive follow up. I'm just going to miss her.  Like every single day for the rest of my life.   

In the afternoon Grandma came and brought a silly clown nose.  Cicily and Sophie enjoyed antics with that of course!  And there was nail painting.  It's Minnie Mouse nails today.

That's Sophie's cot in the background.  She and Cis share a bedroom.  Since Cicily's scary breathing night a few weeks ago, Cicily has been sleeping in Mom and Dad's bed and Soph sleeps at the foot of our bed in that cot.

Cicily continues to have fluid in her stomach.  Drained 2.5 ounces at lunch and another 6 at bedtime.  We're suctioning clear secretions all the time from her trach, which leads us to believe she also has the fluid in her lungs.  She's losing a bit of weight.  This all adds up to what the hospice nurse mentioned to us about bodies not being able to use TPN at a certain point so it gets stored elsewhere. The only question is, is this another few days of bad and then her body will work for a while or is this a new normal.

Sunday, Monday

 Sunday Cicily slept in until after 10 am.  Which was good because she was up crying in the night for an hour or so.  She got dressed for the day but never felt good.  She was clammy and sweaty and wanted her clothes off.  So she spent the day snuggling with Mom.  When she was in her wheelchair for lunch and dinner time, she was sad and crying.  But as you can see, if she was snuggling with Mom, she was just fine and playing jokes and laughing even.  It worked well for a nice restful Sunday.  Sophie decided she wanted to get into Harry Potter so we ended up watching 3 movies.  Can't complain about being able to make my girl happy.  But I hope she can be happy without snuggles some of the days this week.  I don't necessarily do well sitting in a chair all day, not being able to get anything done.

Monday morning.  Cis had a good night, slept through until 5:45 am when she woke up crying.  Tried to give her tylenol and then morphine and it didn't really help.  We got her in the bath as she had thrown up and we thought it might help her feel better.  She cried through the bath and getting dressed.  But laying back in bed snuggling with Daddy made it all good.  She even outlasted him before they both took a nap.

Thursday, Friday, Saturday

Thursday Cicily went to school for her typical (as of the last month) 3 hours.  This schedule has been working very well for her.  She'll wake up a little late and lay in bed listening to music for a while.  Then get ready for the day and have some Mom and Cis time reading or something.  Then go enjoy her afternoon at school.  

In the evening on Thursday Cis started feeling pretty blah.  We snuggled for a bit in the green chair then she went to bed.  She woke up and had meds once in the night.  

Friday morning she wasn't feeling great still.  She had some poop with a little blood in it, which is somewhat to be expected with her bowel issues.  So, to cheer Cicily up, we gave Lucy a bath before school.  As you can see, Cis LOVES this because her job is drying off a wet, funny looking puppy.  Lucy doesn't love it so much, but Cicily gives her tons of dog treats after, so she puts up with it.  

Cicily wasn't feeling great at school, but had plenty of distractions from friends and her loving nurse to keep her happy.  She had a BM 5 times in the past 24 hours, so we were hoping that would make her feel better.  But when she got home, we just ended up having a snuggle for the rest of the day.  Thankfully Grandma was hanging out with us so she could get anything we needed/clean the house while Cicily and I snuggled.  Sorry Grandma, I definitely got the better end of that deal.  When Cicily really isn't feeling well only Mom snuggles or morphine can really make a difference.
Grandma helped realize that Cicily's stomach was full.  So thankfully she has a g-tube and we can just pop it open and use a tube to get whatever is in there out.  We drained 8 oz of fluid.  Hospice said this was likely to happen.  Towards the end your body can't use whatever food you're giving it (even when it's the most basic it can be and fed through your veins) and your body ends up storing it in other organs like the stomach and lungs.  So not a good sign, but I'm grateful we can at least use the g-tube and drain her stomach.

Even with the new issues and obvious pain, Cicily still managed to smile and laugh on Saturday while she helped clean her room, have a visit from some special members of our church,  and attend a family party and a friend party.  At night we did another draining and got about 6 ounces. Surprisingly, her respiratory infection seems to be improving.  Who knew it could do that without antibiotics?!  

Tuesday

Tuesday this dude was at home to greet Cicily off the bus from school.  Jordan and Cicily share a diagnosis (even if it is just one of Cicily's "diagnoses" that drs have given her to get stuff approved).  It was awesome of Jordan to travel to spend the afternoon with Cis.  Books are always the way to her heart!


Cicily continues to get a little more distant.  She has more frequent staring spell seizures.  Her respiratory symptoms are staying fairly steady.  We're feeling more of the marathon here rather than a sprint to the finish.  And as long as that face keeps smiling, a happy marathon is awesome.

Monday

 We played for a couple hours outside after school today.  Maya read, Cicily and I snuggled and watched Sophie learn how to ride a bike.  Sophie just decided it was time to learn to ride on two wheels so she pulled out the bike and taught herself.  20 minutes later she's going up and down curbs, turning, and standing up off the seat.  Everything comes easily for that girl!  You'd think Cis might get a little jealous or even a tiny bit sad that she's not able to do these typical kid things that her sisters can do.  But she's only ever looked at Sophie with pride when she accomplishes something new.  She's a good big sister.

Cis sometimes has a hard time holding up her head.  Mom's shoulder makes a good pillow.