Santa letters for Make A Wish

Here's a great way anyone can help give a little support to Make-A-Wish.  Macy's is donating one dollar for letters to Santa that are stamped and placed in their Santa mail box in any Macy's store.  Here's the link: http://social.macys.com/believe
The girls all wrote their letters to Santa tonight and we took them down to Macy's.  Their mailbox is cute.  Cicily and Maya liked putting their letters in the special Santa mailbox. 
We're always looking for ways to support Make-A-Wish.  As you know, we think they're amazing!

Wish Granters cards

Cicily has been very happy to recieve more mail lately.  Her Wish Granters - Liz, Czerina, and Michael have sent her random cards over the last few weeks.  It really makes her day to get her own special card from her wish granters!  I think everyone should have someone like a wish granter in their life when things are rough.

(I love all the paper from the envelope strewn around Cis - that's how she gets her mail open!  It takes lots of time and focus to get those pieces free.)

This card came on the perfect day. Cicily was really sick (which is saying a lot for her) for a couple weeks. There were a few days in a row where we only saw one or two smiles a day. This card came on one of those days and it was good to see that little smile. Thank you! (excuse the unzipped jammies - she was hooked up to breakfast)

I wish to. . .

Go to Disneyworld with my family!  It's going to happen in January!!! 
We still can't believe the generosity.  We talk about Cicily's wish every day.  She is beyond excited.  It's lovely to have something so amazing to look forward to! 

love

Never as happy as with her sisters

Cicily's Scripture

Our family has been memorizing scripture passages lately.  Our latest is a scripture we've termed Cicily's Scripture.  It's from the New Testament when Jesus' deciples ask him if a man who is blind sinned or if his parents had sinned. 
John 9:3 "Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him."
Fortunately we don't live in a time or believe in a faith that teaches that God punishes people for committing sins by giving them or their family members disabilites.  We love the second part of the passage that says "the works of God should be made manifest in him". 
I've always had great respect for brave people who are willing to come to the world and live in a difficult body.  I know Cicily was willing to come to the world in her body so that the works of God could progress through her.  I'm so proud of her for her bravery and wisdom.
I love it when someone tells Cicily or lets me know how her life has made a difference in theirs.  It good to hear of the benefits of her sacrifice. 

Front teeth

 Cicily lost her two front teeth!  It wasn't your standard 6 year old wiggling a loose tooth for weeks event.  But why be standard when you can be Cicily!  She was crawling on our hard floor and fell on her teeth.  One tooth popped out immediately accompanied by a lot of blood and the other tooth followed later that night.  Cis was obviously crying at first, but then became pretty happy after a few minutes of snuggling and talking about what a big girl she must be to lose her two front teeth.  She was excited to leave them under her pillow that night so the Tooth Fairy could come and leave her some money.  Now she'll proudly show you her grown up toothless smile!

Cicily loves being a big girl like Maya with no front teeth.  We had to hurry and get a picture of their toothless smiles before Maya's teeth grow in.

Cicily Glo's

This is the picture Maya drew for Cicily on her birthday.  She titled it Cicily glo's.  When we asked her about it she said that it shows how Cicily glows in the darkness.  It's so perfect.  I love it.   
(Note on the details: Cis is sitting in her chair and wearing a purple polka dot dress)

Happy 5th Cis!!!!!

If big smiles and lots of laughs are any indication, Cicily had a GREAT 5th Birthday!!!!!

 It started over the weekend with a card in the mail from Cicily's Wish Granters.  Cis always has to open one piece of mail every day.  So, she was giddy to have her own BIG piece of mail from her wish granters to open!  Then, as you can see she was so excited to recieve a birthday card with polka dots, chickens, and music.  There couldn't be a more perfect card for Cicily!  Thank you Liz, Czerina, and Michael!

 As soon as she woke up, it was birthday present time!  Michelle gave her a polka-dot bag bursting with Dora fun!

 Maya and Sophie gave Cicily their Dora presents.

 This kitchen was a big hit from Mom and Dad!  Cicily has been cooking delicious food for all of us all day!  (Thanks Michelle for finding it on Craigslist and picking it up for us.)  Oh, and the dress Cicily got to go pick out this morning.  Dad talked to her about presents last night and she said dress.  Mom hadn't bought a dress for her birthday this year - oops.  So, we went to the store this morning, she liked choosing her own birthday dress!

 Birthday party at school!  I'm not sure if Sophie or Cicily loved this more.  Cis wanted cookies to share with her friends at school.  She was talking about it all day yesterday!  You can't see it in the picture too well, but she has a cute polka-dot 5 crown on from her teachers. 

 When she came home from school, Tami had this BIG surprise for her.  A larger than life size Minnie Mouse!  Cis was stunned when she first saw her, and loves her of course!  She had fun flopping and snuggling with Minnie all evening!

 Grandma DeEtte came to bring a card, wish a happy birthday and give Cis a hug.  Cicily was showing her she's 5.  She can sign 5 and 1 the best, so this is a good year to ask Cis how old she is!  Grandma can't wait to come back tomorrow night to babysit, give Cis her present, and play with all the fun new toys! 

We asked Cicily what she wanted to do at night for her birthday and she wanted a Cicily's Birthday Family Night Celebration.  We used her new markers from her teacher at church, Sara Willis, to make cards for Cis showing what we love about her. (Maya's idea)  Cicily wanted cookies instead of cake, so we enjoyed cookies!  And, we played and danced with all of her new toys.   
After she was in bed, she got 2 surprise phone calls from her cousins to sing happy birthday.  So we put her hearing aids back on for a beautiful Cesar "happy birthday", complete with "hot lava" of course!  Then we put them back on a few minutes later for an adorable Max "happy birthday" solo.  Cicily really loved both of them! 
Thanks to so many people that love Cicily, she enjoyed another very happy birthday!

Wish Granters!

Cicily's Wish Granters - Liz, Czerina, and Michael

Reading and playing with balloons!

This wishing stuff is so incredibly fun and exciting!!  Cicily's three wish granters Liz, Czerina, and Michael came to meet her and the family last week.  They came with gifts for Cicily, Maya and Sophie, balloons, pizza, and an air of excitement!  I was so impressed at how they focused on Cicily, but also included her whole family.  What a fun night we had!  Cicily was insistent on her wish granters seeing her chickens and her bedroom and they kindly obliged.  They also played with her and asked her questions about what things she likes: Dora, polka dots, Taylor Swift, animals, Minnie Mouse, etc.  Then Cicily showed them her wish book, the lovely coloring book from Make-A-Wish about what she would like to wish for. 

It was pretty apparent to them by the end of the night that Cicily's one true wish is:

To go to Small World at Disney World! 

When they asked her about Small World her face lit up and she did a whole body "yeah" where every limb gets excited and flails.  So, her wish granters told us they just have to run all the paper work and get the ok from Cis' doctor and then they'll plan a trip to Orlando for our whole family!  We are beyond excited!  They told us about this AMAZING village we would get to stay at called Give Kids the World: http://www.gktw.org/  You must check it out, it's beyond belief fun for wish kids and families.  After the wish granters left we looked up Give Kids the World online and enjoyed looking at pictures and seeing all the awesome activities they offer.  Maya was giddy and asked how much we'd have to pay for all of this.  When I told her we wouldn't have to pay anything because wonderfully kind people donate their money so families can do this, she was in awe.  She said, "I can't believe so many people would do that for us."  I'm in awe too Maya. 

Later we realized we'd also be able to go to the Wizarding World of Harry Potter at Universal Orlando.  Now for the last week, multiple times a day, Maya will yell, "Harry Potter Theme Park!!!" and every single time Cicily "yells" back - she laughs, smiles, flails, and flops backwards.  We had to get it on video, it's so cute and gets us all excited!  I decided Cicily is mainly excited about the Harry Potter theme park because she knows it makes Maya happy.  It's not like most 4 year olds that are just liking what their big sister likes; Cicily is genuinely happy to make her sister happy. 

What a lovely thing for our family to be able to focus on and daydream about!  Thank you Liz, Michael, and Czerina and Make-A-Wish!!!

Being Cicily's Mom has taught me - it's ok to paint a doll's toenails

Things keep popping into my head lately that I've learned from being Cicily's Mom.  So, I've decided to start a regular posting topic of "Being Cicily's Mom has taught me..." 

I already mentioned in the last post that Cicily wanted to paint her doll's toenails.  It was a little too dangerous for me at first.  Defacing a doll permanently by painting her toes.  Dolls toes shouldn't be painted, they're dolls, you take care of them.  You don't write on walls, you don't color a doll's face, you don't paint her toes.  So after all that went through my head in a quick second, I realized - who cares?  It's Cicily's doll.  She'd like her toes to be painted just like hers are painted.  It's not going to hurt anyone.  So we painted those dolls cute toes.  Cicily was so proud! 
Then Maya came in the bathroom and Cicily showed her the doll's toes.  Maya's face registered all of my first thoughts (she's a practical, planner - kinda gal like her Mom).  Maya looked semi-horrified.  But then her face softened and she said, "oh, you're going to take the paint off though huh."  I said, "no, we're going to leave it, isn't it cute."  I explained my rational to Maya and eventually she was mostly ok with it too. 
It's a good lesson for a practical girl like me to learn.  I try to remember it doesn't hurt anyone to have a doll's toenails painted.  It doesn't hurt anyone to use up a sheet of new stickers all in one day.  It doesn't hurt a kid when they get dirty playing outside. 

Cicily's dirty painted toes.
 Maya took this lovely picture of Cicily's dirty feet after Cicily got to screen for artifacts on a recent archaeology dig. 

Thanks to you Cis, your younger siblings will have a much more dirty, destructive, playful childhood, I think they'll thank you.  :)

What it's like to know your daughter is going to die

The title's a bit dramatic, but given the situation, I feel a little more dramatic than usual.  I wanted to write this post because I know people are curious about what it's like - to know your daughter will die young.  I thank those close friends who have already asked me what it's like, and especially thank those that can share their own stories with me.I will try my best to put it into words - the feelings, the thoughts, the actions, the changes. 
My mind keeps coming back to the country song, "Live like you were dying".  Knowing Cicily won't have a full, long life has, without us even realizing it, inspired us to fill her life up as much as we can with the things she loves.  We haven't gone skydiving or ridden a bull named fu man chu (for those Tim McGraw fans out there).   But I have, if possible, loved deeper.  And done some other things too, like: 
 - Just after we found out (for sure) in December, I wanted to spend every minute I had playing with Cicily and making her laugh.  I stopped talking to friends, stopped taking her to doctors, cancelled therapies, and started focussing on the most important things.  It didn't take too long though to realize there's a reason we have friends (thanks friends for still being friendly), and that sadly those annoying insurance companies still need to be dealt with. 
 - In October (back when we knew her condition, but it was unconfirmed) when I took her to get her 4 year old portraits taken, I bought the big one.  If it were her last portrait, I would want a big one.  Now her 5 year old pictures are coming up.  How many years do I buy the big one? 
 - In November we started to look into chickens.  We should have waited until we had a back yard that should actually accomodate farm animals.  But, would we have the time to wait to give Cicily her own farm?  We knew she'd LOVE them, and everyday when she asks to see her chickens I'm glad we didn't wait.
 - A few weeks ago I was painting Cicily's toenails and then she wanted me to paint mine.  Then she picked up a doll by us and pointed to the dolls toes.  She wanted to paint the doll's toes.  At first I thought, dolls toes shouldn't be painted- that would deface the doll!  Then I realized, what's the big deal, life is short, if Cis wants her dolls toes painted - who cares!  So now we have a doll with cute red toenails. 
 I wish I could say knowing my daughter will die young has made me a perfect person - that I always spend time with the most important people first, that I always remember to be patient and act kindly.  That I do spontaneous, fun things everyday just because you never know what will happen tomorrow.  I wish I could even say that everyday I spent more time with Cicily or never lost my paitence with her.  It's not exactly like all of that.  Knowing Cis will die young hasn't made me perfect, but it has made me a better person I hope.   And, no, I'm still not going skydiving!

First Day of School - Preschool yr. 3

Cicily started preschool last week. This is her 3rd year in preschool. She was SO excited to get back to her old friends - Miss Tami (nurse), Miss Marli (teacher), Miss Sue, Miss Sarah, Miss Mary, Miss Rocio, Miss Rachel, oh and some friends her own age too! We were so excited that all of her amazing friends will be taking care of her and ensuring she has another fun, safe, and educational year in preschool. I can't say it enough, we love Cicily's teacher and nurse and all the professionals that get to work with her in school.

Home-sewn beauty: A thank you spotlight on Aunt Kristy

A few months ago we got a total surprise in the mail. Maya was so excited to get something for her - she's always bummed because Cicily always gets so much mail (nothing exciting I try to tell her, mostly medical bills). My immensely talented cousin Kristy had been working on these booties for Cicily for a while, getting them just right. She sews booties for babies, and wanted to try her hand at a larger pair for Cis. She ended up making 4 adorable pairs for Cicily to wear. And, she also included Maya and Sophie and made a cute wallet for Maya, that she's "keeping all of her most special things in" and a headband for Sophie. If you had tons of time Kristy and I had tons of money, I'd keep you busy making even more bows, bags and booties for us! :)

Two years ago (wow, it's been a long time already) when Cis got her trach re-placed, my Kristy called me while I was sitting next to my fully sedated Cicily, my head flooding with all the things that having a trach back meant and Kristy told me she wanted to sew a bag for us. It was a little thing considering all we'd been through - a bag. But, it was also a huge, tender thing that made me know our Heavenly Father was watching over us and making this setback easier in simple ways. It was a silly thing I dreaded - having to lug around a suction machine and a bag with trach supplies - again. So, knowing Kristy was thinking of us and making us our own special bag was a big lift. And, this bag has lasted a full 2 years, looking and performing excellently, inspite of it being used and abused daily!

Kristy sews a lot of wonderful items. She has a blog: www.thevintageclothespin.blogspot.com and an etsy store: . You should really check them out!

We've been on Vacation

We've been on vacation for 1/2 of July and it's been glorious! First we went to a cabin with Chris' fam. We went to a fish pond to let the girls experience catching a fish. They were horrified by the prospect of holding a fish and didn't care for the whole fishing thing. Sorry Uncle Adrian, I feel like I've failed.

Then mid-July we got to go to Bryce Canyon in S. Utah for a week with my fam. Beautiful scenery, perfect weather, and awesome family. Wish we could have stayed longer! Here's Cis and Sophie enjoying a river and waterfall.

We had a big family reunion. This is Cicily with her 2nd cousin, Meredin. Meredin is 5 and just loved Cicily. She was so cute, the first time we met her she just came right up to Cicily and said hi, then asked a couple questions about her (one of which I loved, "is she handicapped?") So I explained all about Cicily. Then Cis taught her some of her signs and Meredin pushed Cis in her chair all around the camp. They were legitimate friends. I love it when people treat Cicily that way. The family by beautiful Bryce Canyon.

I didn't mean to block out Cis, but she got me in a headlock hug right before the pic was taken. She's been giving the most excellent hugs lately! We all love it.

Grandpa made up this fun game with Cicily. They swatted that milk jug/ball around on the carpet for at least 1/2 hour. Cicily was laughing the whole time. She loved spending so much time with her grandparents. Playing games, going for walks, enjoying beauty, and even waking them up in the morning. Good thing we have chickens and Michelle at home, or she never would have wanted to leave!

Cicily's Song of Love

Go push play on the cute picture over on the side bar. That's Cicily's very own song!!! She loves it. I love it, although I can't listen to it without getting teary-eyed.
There's a wonderful organization called Songs of Love http://www.songsoflove.org/ that writes, sings, produces, etc. songs for children with medical, physical or emotional challenges. Cicily has been so into music lately that we thought she would LOVE having her very own song all about her. Songs of Love is awesome! They had us fill out a little survey all about Cicily and then a few weeks later this song came in the mail - all about Cicily, for Cicily.
She was excited to take the picture over there so we can send it, along with a thank you card, to Lindsey Jones, the artist who wrote and sang her song.

Thank you Songs of Love!

What Cicily's been up to

Mommy putting eyeshadow on Cicily. She loves the girly things - makeup, dresses, hair, pedicures. Good thing she doesn't have any trace of the diva personality to go with it.
Maya turned 7! This is the game Cicily wanted to give her.

Playing Barbies with Michelle in all kinds of different ways. Michelle is awesome at coming up with new games and ways to pretend.

We went to this super farm/petting zoo. Cis loved feeding all the animals. The first one she fed was a little donkey that ended up biting her. It didn't dissuade her from feeding the rest of them though.

Petting a camel. There was also a popular zonkey - zebra/donkey (seems kinda wrong, but kinda cool).

Gathering chicken eggs every day. Cis takes this soft basket outside so she can carry the eggs back in the house safely.

Sophie turned ONE year old! Cis is helping her open the present she gave her.

Playing in more boxes. Twin sisters.

Cis rode in another ambulance. This time it was all fun! Her nurse Michelle's husband is a firefighter. He brought this truck that's similar to an ambulance over for Cicily to check out. What a fun backstage tour experience!

Summertime! When wer're not swimming at Grandma and Grandpa's pool, we've been creating a water park in our own backyard!

Cicily has been all about dresses and pigtails lately. We just bought her this new summer dress, since she only wants to wear dresses now. This is the huge hug she gave Daddy when she went to show him her new dress and pigtails. I think she started liking dresses so much because her Daddy will always tell her how beautiful she looks and make a big deal out of her dresses.

Cis gets a wish

Cicily is going to get the chance to dream big and have her wish granted through Make-A-Wish! We are all very excited about this. They sent Cis a wish book in the mail and we were coloring it and discussing wish ideas last night. Some of Cicily's favorite ideas were: being a farmer, feeding farm animals every day, meeting Mickey Mouse, having a dress to wear for each day of the week, and going to Small World. Cicily got very excited about these ideas! I guess now she gets to meet with her "wish granters" to figure out her big wish.
This wish process has been a welcome excitement for all of us. At first Maya was jealous and didn't understand why she didn't get to have her own big wish come true (to have a Nintendo 3DS, go to Hawaii, or go on a Disney cruise). My explanation of, "Make-A-Wish is something really special that people do for kids who won't live to be adults and have the chance to make their own wishes come true," was not adequate at first. After thinking about how Cicily never wants to do anything exciting without Maya, we told Maya that since she's been such an awesome big sister to Cicily, Cis will for sure want her involved in whatever she wishes for. Now Maya's on board and excited to help Cis decide on a wish. For me, it's been a nice change to have thoughts pop in and out about the thing that would make Cicily really happy; as opposed to thoughts about her funeral arrangements. A very welcome diversion. I've always thought Make-A-Wish was an amazing, unselfish program. I am in awe that people are willing to expend so many resources to making my little Cicily's wish come true.

The winner is...

Cicily! She colored an Easter bunny for a coloring contest at Fresh & Easy and she won first place!!! She was quite proud when I told her the news. Here she is holding the Easter basket she won. I wish I would have gotten a picture of her coloring page. It was true Cicily style- color waves all over the page (some people may call it scribbling) and crinkled paper. Our thanks to Fresh & Easy for choosing as their winner a coloring page with it's own unique style!

Friday Fun

Since Cicily was a baby, we've tried to keep Fridays our fun days. Free of dr.s, therapy or anything else. Since we don't have to go anywhere, we don't even have a nurse come to help out. So when Sophie takes a nap, it's just Mom and Cicily time. This is what Cicily has been REALLY into lately on Friday afternoons:
She gets to chose the color of toenail polish for herself and me. For Christmas she got these fancy stickers, so she also decides which sticker to have. Then she lays down and gets a pedicure. She's always excited to show off her toes to Maya and Daddy when they come home and to her nurse and teacher on Sunday!

I love Fridays

ambulance to ER

Cicily received her 3rd escort to the ER via ambulance on April 12th. She had a wicked respiratory virus complete with fever for a few days. On that Tuesday she had her morning breathing treatment, breakfast, and then bath. In the bath she was very upset, so I washed her quick and took her out. As I was holding her in her towel she got really rigid and despondent. Her color turned almost grey and she started "posturing" as her nurse Michelle calls it. When we hooked up the pulse-ox to check her oxygen level it was down to 78% (bad is anything less than 90). So, I asked Michelle to call 911 so an ambulance could take her to the hospital. We could have transported her in our car with oxygen, but it wasn't worth something happening en-route. She was totally out of it in the ambulance, probably doesn't even remember the ride. I'll never forget sitting there watching her eyes glazed wondering if I'd ever see her smile again. In the ER they hooked her up to oxygen (as we had at home), ran some blood tests and took a chest x-ray. They all came back normal. (It's shocking to me how many of this girls' tests come back normal! She's very normal for a not-normal child!) Cicily was completely back to normal within a couple hours, so they sent us home with no clues as to what happened.


After talking to Cicily's neurologist's nurse, my best guess is she had a seizure. This is new ground for me and it was scary. Give me a plugged trach, pneumonia, a blocked airway of some sort and I can handle it. A seizure- what do I do with that? I guess the unknown is scary. And, I guess we'll get used to it and become pros like we always have in the past.


Later that same night, Cicily was smiling non-stop and asking to play with her chickens and her swing set.


Here's a picture of Cis giving Sophie a ride into the house on her chair after coming home from school yesterday. -Still smiling!

Preschool Olympics

Cicily's school held their annual Preschool Olympics in Feb. Sophie and Mom got to go watch Cicily "compete" in sack races, bean bag toss, crawl through, paddle ball, etc. Cicily's teacher, aids and nurse were fabulous as always to help Cicily participate in all the action. Cis really enjoyed most of the fun games. At the end she even got a trophy and had her class sing to her.

A new friend

Michelle! This is Cicily's new nurse (well, new as of January, not really new anymore). Cicily loved Michelle from the very first day with her. Really! I had to keep reminding myself that all of Cicily's "extra stuff" was new to Michelle, because she fit in so well with all of us. When I talked to people about Kelly getting a hospital job, I'd say I was nervous about getting a new nurse but that I had hope it would be just fine because Heavenly Father always takes care of His Cicily. I should have more faith! Michelle could not be more perfect for Cicily right now. It's amazing really. Kelly was in Cicily's life full-time at just the right time for Cicily and our family and now Michelle is perfect for a whole different set of reasons.

Some of Cicily's favorite things to do with Michelle:

play a variety of new games with the chickens

give Barbies, Dora or other toys a bath

go for a walk

have Michelle sing "Enchanted" by Taylor Swift really loud to Cicily on the way to hippotherapy (hope you don't mind me sharing Michelle :))

and lots of other games, fun things I'm sure I haven't been around for