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Happy 2nd Birthday Cason!

3/27/2014

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There are many blessings in our life. They come in all different shapes and sizes. There are big ones and little ones and silly ones and wondrous ones and some challenging ones, too.

And then there is Cason.  He is a joy and a blessing. He is simply pure joy. I love this picture because it captures that little look of mischief that is ever-present on his precious face. He is always smiling. He is always finding new ways to make us smile. He is always finding new ways to make something dangerous. He is quite simply: precious.

Cason woke up our family two years ago - in more than the traditional way.  He surrounded us with his love - and love of adventure - and his caring, gentle soul. This child is wise beyond his years. He has an old soul. He loves everyone, and everything and finds happiness in every moment. 

He runs through the house shouting for his hero, Noah. You can hear his little voice get louder and louder as he becomes more and more determined to find him.  And Noah has endless patience for the monkey that turns off his computer during mid-game and turns his "clean" room into a hurricane of books, cars, and blocks.  Noah welcomes Cason into his room, shares his friends and his time,  and is eager to wake him up in the morning to play. They have a delightful relationship and it is just a joy to see them chase each other - whether on the Radio Flyer - or down the field, or running wild through the house.  Cason has brought the fun and giggles into our busy home.

Cason can lift my spirits in ways that I can't explain. He looks deep into my eyes and pulls me close for a cuddle. He has a zest for life and living and climbing and he is always two steps away from a major accident.  

As the third child he is often taken along for the ride. He spends more time in the car than the other kiddos - but he does it with a smile.  He is easy-going and is content with his place in the family. He is patient with Cecily - even when she takes his favorite toy or pushes him out of the way. (We're so proud of Cecily asserting herself - but we're working on her developing manners!) I love Cecily's nickname but no one says it better than Cason. He loves his Cece and I love that even at two he seems to know when she needs a little extra attention.

I thank God every day for the appreciation that having Cason has given me. With Noah, I simply  took his health, his happiness and his development for granted. Ignorance really is bliss. I worried about silly things - and everything - but in a completely new Mommy sort of way.  I found everything Noah did perfection - but I didn't enjoy it because I didn't let myself. The joy was there -  I was just too focused on ensuring he was doing everything according to the milestone chart - and I was always worried he was going to get hurt.  I smothered him. 

With Cecily, the stress was so great, the pain so deep, that I was just surviving for the first two years.  I was so grateful that she was alive - and growing - but I was always waiting for the shoe to drop. I couldn't seem to relax because of the "unknown"... the fear that perhaps next year she wouldn't be with us.  On a daily basis she forced me to appreciate the gifts in our life - and she woke us up to the blessings in our life.  But just surviving was our goal.  And ensuring Noah (at just a toddler) was not lost in the shuffle.

So imagine our surprise when Cason came along in 2012.  Could we handle another child? Would we have enough time for him? How would the other kids respond? Was it the right decision? Were we now officially in over our head? The questions swirled until he burst onto the scene. He was joy from day 1.

It was quite simply - the best decision ever!  Cason is a present.  We unwrap him every day. We see the world through his eyes. We appreciate everything he does - and we don't worry about anything he can't yet do.  We appreciate his passion for life and his good health.  We welcome the typical tantrums and toddler antics. We are not upset by breaks in our sleep or messes in the house.  We don't fear.  We just enjoy him for who he is and what he brings into our home. 

Thank you Cason for waking up our family to the simple joys of life again.  Thank you for forcing us to smile at least 20 times a day.  You are a constant reminder of what life is all about.  We can't take ourselves too seriously. We simply have to let life wash over us. Thank you for making big messes.  Thank you for sharing your food with the dog.  Thank you for cheering on Noah at every game, event, practice.  Thank you for giving up your toys to Cecily when you just know in your little heart that it is the right thing to do.  And thank you for fighting with her when she is being a pistol because you know she is strong enough to handle it. Thank you for giving the biggest hugs and for taking the largest falls and dusting yourself off like nothing happened.

You inspire me every day.  You make me want to be just like you.  Tough. Fearless. Happy.  You complete our wonderful family.

You are pure joy from your bright blue eyes to your chubby little thighs. 

Happy Birthday Baby!  We love you to pieces.

Onwards and upwards!


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Free Dance Scholarships!

3/17/2014

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On behalf of InnerDancer Performing Arts...

Cecily's Closet can offer 8 sponsorships to children whose parents would like their kids to have the opportunity to perform with InnerDancer Performing Arts in Cinderella 2014.  Their cast is for children and teens of all abilities and who would enjoy being part of our incredible and inclusive cast!

Potential performers should be 3 years old and upwards.  Perfect for boys as well as girls.

Here is a video clip of their last Cinderella production:

Our Amazing Cinderella Story on Channel 15 abc News

http://www.abc15.com/dpp/news/region_phoenix_metro/central_phoenix/talented-special-needs-dancers-amaze-with-ballet?CMP=201110_emailshare  

This is a great opportunity!

Cinderella Casting Call … 
A Totally Inclusive Original Production. Come join our 
Magical Cast of Special Needs & Typical Children & Adults 
led by Cinderella and her Friends! 
 
An Inspirational and Life Changing Experience 
Performances April 26 & 27 at the CA Center for the 
Performing Arts, Escondido. 
 
Ongoing Costume Fittings: 

Saturdays 11:30a.m.-1:00p.m. 
Mountain Shadows Outreach Services
970 Vallecitos 
Blvd., San Marcos –
Please use the entrance at the rear of the building 

Come and see how magic is made as typical and 
special needs children and adults dance, act and sing 
side by side. 

Our Purpose and Passion is to transform the lifestyle of children and 
adults with developmental disabilities and their families. 
 
Call Caroline Bossmeyer CEO with any questions 602-502-2743. 
Register today at InnerDancers.com 



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Must read for San Diego Moms and Dads!

3/11/2014

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Did you know you can go away for a mini-vacation in San Diego? What? You don't believe me. You can't afford child care? Read this!

What Is The Respitality Program?
The "hospitality" of local hotels is combined with "respite" care to create "mini-vacations" for parents who have children with special needs. Parents who participate in Respitality receive a gift-certificate for an overnight stay at a local hotel, along with child care funding from UCP, so that they can enjoy a short refreshing break from their demanding daily care routines.

Families who have a member with a disability face some extra challenges on a daily basis. The whole family benefits when the parents or guardians are able to have a short, refreshing time away.

How Does It Work?
Local hotels provide free overnight accommodations and UCPA provides a stipend to help pay the costs of child care. Participants are responsible to arrange for child care and to pay for their meals and incidental expenses while they are away.

Who Is Eligible?
Respitality is offered to parents or guardians who have children with any type of disability.

For more information about Respitality, please call UCP at (858) 571-7803 or email us at [email protected].

Onwards and upwards!

 
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Happy 5th Birthday Cecily

3/9/2014

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Cecily's life is non-typical so it came as no surprise to us that we kicked off her 3-day celebration on March 7th at the Future of Genomic Medicine conference in La Jolla. 

You can see video of Brien and me getting interviewed by conference organizer Eric Topol, the prominent Scripps Health cardiologist-geneticist, accompanied by Lynne Bird, Cecily's geneticist and doctor who helped us complete a complete sequencing of Cecily's genome.

In true Cecily fashion - she arrived dressed immaculately with a blazer, fitted pants and of course, her bow of choice.  Lucky for us she has good style at age 5 because she will not wear anything she does not choose.  I will never complain about this because we are just so excited to hear her opinions and to see her demonstrate her sass.  We made the tough decision to have Cecily present at the conference to help humanize her story and the importance of genomic sequencing to parents like us.  The gift Scripps Translation Research Institute provided us by sequencing Cecily as part of their IDIOM study is immense.  We are always careful about sharing Cecily's story but the science is so important.  The more people who choose to do this for their children - the more the data repository will grow and the more likely it will be to see trends, identify patterns and perhaps future treatment/help/or even just a roadmap for a parent with a rare, unknown disease.  (more on this in future blogs).


I share this story only to reflect that Cecily had about 500 people wish her happy birthday!  Was she in her element? Yes.  Does she love attention? Yes.  The conference coordinator heard it was her birthday and they provided her with a special pink, glittery, bow that announced to all that yes, indeed it was her birthday!  They also provided 2 presents for her that could not have been more perfect! They gave her a set of dress-up clothes. One Doctor outfit with all the necessary medical equipment to provide check-ups on Cason, Flash and all of her dolls... and a glittery, sparkly, Mermaid dress.  OMG she was in heaven.  She kept saying - Open,  Open, Open! 


Her birthday fun continued with a mellow family party and a few presents.  She needs for nothing but she is 5 and she was all to eager to tear into the presents.  In fact, it is the first time we've ever really seen her excited to be getting presents and she would periodically go over to the pile and grab one to open.


On Saturday we had a small party for her at the house with just family and family friends. We chose not to invite her class-mates as we had a large number of children and it was really wonderful to see everyone noticing Cecily's progress.  She had two of the most glorious days of her life.  The words are flowing from her precious lips. She asked for a blue lolipop - not the pink one. (A major step forward on more ways than one...)  She is using her words to get her needs met and she is so very proud.  If you ask Cecily to repeat you she will - saying each word more and more clearly.  We can see the light at the end of the talking tunnel.  It will take years but she is well on her way.  Today she asked for her ballet books, for Tallulah, for Franklin, for her Elmo tunnel train and more!  The articulation is so crisp when she is internally motivated.


Her eating is slowing and surely progressing, too.  We have taken our foot off the gas and ironically she has stepped up herself.  She is asking for her apple juice, her banana and her cookies.  She is more willing to eat at school and to drink her milk.  She is screaming less (still some screams - but less!)  She is expressing herself so we are trying to honor her words and show her they do have power - even if we don't always love what she is saying.  (ex. No, I won't!... I don't want to... No Mommy!)


As we celebrate Cecily turning 5 we are filled once again with a tremendous hope. Cecily is such a fighter.  I have never seen a child have so much intensity.  She tries so very hard. You can see her brain processing.  And for the people who appreciate that - and pay attention - she shares herself completely.  She is full of love and life.  She is showing us everything she has to offer and we couldn't be more proud of her.  


We are so grateful that we got Flash for the kids.   Cecily adores him in ways only a video could truly capture.  (Cason loves him even more - if that is possible!)  Flash has brought a new dynamic and a new dimension to the house.  We feel like we've hit our stride and we're just excited to see what's around the corner.


Thank you to all of our family and friends, Doctors and therapists, nurses and social workers, teachers and aides, and instructors of all kinds for believing in Cecily.  The miracle of Cecily continues.  Look out world!



Onwards and upwards!

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Asking for help...

3/5/2014

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Well for the first time in 4 years I'm upset with Weebly, the wonderful website tool we use.

I wrote a blog that was quite hard for me to write and doing it again would be closely to impossible.

As such, I will just share the intent and not the heartfelt words that I had crafted. Perhaps this is God's way of saying it was too personal. Thank you as it likely was.  

Life is hard. Some days are easier than others. And sometimes the days are hard, harder, hardest and I think they can't get worse and they do. I want to crawl into my bed and stay there but my three angels (and my husband) won't allow it. In the last two weeks I have done something I should have done a long time ago.  I have reached out for help.  I'm always trying to help everyone. I'm not very good at helping myself.

For other Moms of kids with special needs who may need a break - check out this retreat!  It may be the first step you take into getting yourself the help you need.
http://www.freeheartranch.com/retreats-for-mothers.html

I'd like to say thanks to the amazing women who have stepped up in the last few weeks to listen to my concerns and to help me craft a plan that is right for Cecily and our family.  I'd like to thank people for 

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    Noah, Cecily & Cason's Mom

    Follow the ravings, rantings, stories, and challenges of a Mom of three as she attempts to see everything with the glass half full! Warning... this blog does not come with spell check...

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