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.