How much work is Cicily?

I have a friend who has a son who has some disabilities.  She told me a few years ago that she feels like her son is equal to two kids in how much work it takes to care for him.  She said she figures the amount of care Cicily requires is probably equal to having 3 or 4 kids.
Since this conversation I've thought a lot about how much work we really put in to caring for Cicily.  Some people have asked about how it really is.
I've given it some honest consideration and decided that right now taking care of Cicily is pretty equivalent to: having a 7 year old, a 5 month old baby, and a small part time job.

A 7 year old because she's 7 and does a lot of things a 7 year old girl does.  She wants to play on her iPad, play with toys, loves to read, and loves to joke around.  We spend about as much time doing these things with her as we did with Maya when she was 7.

A 5 month old baby because the day to day care she requires is like a 5 month old baby.  I remember the specific day when Sophie was 6 months old and I realized, man she is actually less work than Cicily now.  Cicily needs her clothes changed, her diaper changed, to be moved from one place to another, to be strapped into a carseat, to be entertained, etc.  But all these things are more difficult to do with a 7 year old body!  Let me tell you, a 7 year old blow out is horrendous.  I've been collecting pictures for a possible future post, but haven't decided if anyone in the world wants to be exposed to the horror.

A part time job for all the other care and "office" work.  Probably a part time job in nursing, and medical office manager.  For nursing there's suctioning, tube feedings, trach changing, breathing treatments, various daily medicines, bathing, and diaper blow outs (trust me, they're worth putting in 2 categories).  For medical office manager there's ordering 5+ boxes of medical supplies each month, fixing medical supply orders each month, making doctor appointments, getting appointments approved, getting insurance mistakes corrected, etc.

There you have it.  I don't share this in any way to complain or so anyone will feel compelled to give compliments.  I've just been asked, and I thought it would be interesting for people outside of our house to get a glimpse into the daily grind.  How much time and effort a child like Cicily actually takes to care for.  So is it worth it?

The kind of pretending Cicily's life inspires - Sophie edition

I was thinking of posting about something I heard while Sophie was playing the other day.  And then I remembered this post about Maya playing: The kind of pretending Cicily's life inspires.  Maya was about 4 years old and Sophie is 3.  Both play scenarios really mirror our lives at the time.  When Maya was 4 we were all about therapists and medical procedures.  Now when Sophie's 3 we're all about wheelchairs and having hope in a future day when Cicily has a perfect body.
So Sophie was playing the other day (she likes to pretend on her own) and I overheard her saying, "It's ok, when you're resurrected you'll be able to walk and do all that stuff."
I'm happy Sophie has perfect 3 year old faith that because of Jesus, Cicily will be resurrected and be able to walk someday.

(No photo accompanying this post as Sophie likes to spend her days as a "nudie" whenever possible.) :)

Cissie Selfies

A couple months ago Cicily figured out how to take pictures on her iPad (communication device).  So now whenever she wants a break from school work, she entertains herself and her nurse by taking selfies!

Staring - after 7 years I finally discovered something nice to say that works!

"Do you want to say hi?"  It's simple, it's nice, it makes Cicily relatable.

For the past 7 years I've tried out many tricks to get people to move on when they're staring at Cicily.  I've smiled back, ignored, made silly faces, given evil looks, etc.  Sadly I used to find evil looks to be the most effective!  ;{   Until a couple months ago, I asked a small kid who couldn't keep her eyes off of Cicily if she wanted to say hi to her.  At first she was startled that she'd been caught and that I'd talked to her, but then she smiled and said hi to Cicily and then walked away.  Since then I've tried it numerous times and it works!  Most kids will say hi and walk away, some look embarrassed, and some say hi and then ask their questions that we're happy to answer.  Cicily likes it because she loves to interact with people!!  Most of the time this seems to help the child realize that Cicily is just a kid too.  Once we've started a conversation with someone, I always like asking them what their favorite color is or how old they are or what they like to play and then telling them about Cicily's favorite color, age or activity.

Phew, 7 years in the making and I figured it out!  Now if I can just find something that works on those pesky adults....

Cicily's sentence at school today.  One of her friends wished to catch a ball.  Breaks my heart.  

My Body

Cicily was asked to give a part in the upcoming children's program in our church.  The prompt she was given is: "A blessing I have from Heavenly Father is______".  I read it to her and she immediately wanted to fill in the blank with "body".  I tried to mention other possibilities - Jesus, family, chickens even, but she was emphatic about her body.  To give some perspective, she had spent that same morning coughing up blood because her body caught a virus and is fighting off another case of pneumonia.
However, with the amazing wisdom and perspective she has, Cicily really feels that, 

"A blessing I have from Heavenly Father is my body."

I'm 7 years old!!!!!!!

 My day started off with presents!  (Well first I woke up to a bed full of poop - it's clean out the colon day and boy do I feel much better than yesterday!  Thank you Mom and Dad and Heavenly Father for helping me feel better for my birthday.)  Maya gave me a bunch of play food that I love taking out of the basket.  Sophie gave me a Minnie Mouse playset that I will have fun playing with her (and she will have fun playing without me while I'm working hard at school I'm sure.)  Mom and Dad gave me some polka dot pants and new polka dot stickers for my wheelchair (thanks to our friends the Allens for help on those).  Great presents from my family!

Then I got to go to school.  All my friends were so excited for me to come.  They knew it was my birthday and since we're kinda like family, they were very happy for me.  My class is very special to me.  Mom and Sophie came in the afternoon with cupcakes that I picked out.  My friend Juan played me happy birthday on his communication device and we all laughed!  We ate cupcakes together and read a special birthday book.  Then I showed this picture to my friend Mara and she had a huge smile for me!  It's my CHICKEN CAKE!!!!

 So this was waiting for me in the fridge when I got home!  I couldn't believe it!  I requested a chicken cake, but I didn't expect it to be a real big chicken with a purple polka dot bow!  I couldn't wait to share it with my family and friends at my party.

 Me and my CHICKEN CAKE!!!  Miss Bonnie at Inspired Occasions  did such an amazingly perfect job making my special 7th birthday cake!  If you ever want a cake and you're in our area, I highly recommend you call Bonnie!!  I thank you so much Miss Bonnie.  And a special thank you to Icing Smiles for all the kids and families you serve.  You both made my 7th birthday incredibly special and memorable.  

Tonight we had a PARTY!   I got to show my cake to all my Grandparents, Aunts, Uncles, Cousins, and even my best grown up friends!  I'm so happy you could all come to celebrate with me!!!

 My family

 Oh no not the head!  Do we have to eat this beautiful work of art?!?!?

We also played some party games that were all things I liked.  My family and friends put together words about me (just like I write words at school).  We played pin the polka dot on Cicily's chair (I preferred to hold Mom's hand for this one - it got a little strange :)).  We also played pick up the dumped toys because I love dumping toys lately, had an egg relay that my team won, and did a chicken dance!  

It was a wonderful 7th birthday.  The best part was spending it with all the people I love.

I also should say on Sunday before my birthday my 11 year old friends at church surprised me - they all made cute cards for me and I love looking at them and reading them.  Thanks girls!!