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Custom Climbers... upward mobility for children

1/31/2011

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If your child is having trouble reaching the sink or making the transition from a toddler bed to a big-kid bed without a boost - you need to check out Customer Climbers on Etsy! You will be glad you did. Hayley's personalized creations are the perfect gift! Plus, 10% of her sales go to disadvantaged youth. Cute stuff for a great cause!

Inspired as a child by an artistically gifted nanny, Hayley's love of all things aesthetic blossomed in a home where creativity was wildly encouraged. Her work has been displayed in many shows and has received numerous accolades. Haley enjoys helping the artistically-challenged bring their ideas to life. Learn more about her amazing work here.

Her bold and modern designs are so fun and her style is very unique.

Oh yeah - be sure to like her site on Facebook.  As a contributing artist to Cecily's Closet - we'd love you to support this amazing artist! We are so grateful to be working with her on our next project! Onwards and upwards!

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Just like Daddy...

1/30/2011

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Am I losing my four-year old baby to Daddy already? And am I really this upset about it?

Noah looks like his Daddy. Noah acts like his Daddy. They find the same things amusing and they crack each other up. It is like we created a side-kick for Daddy. And he walks just like him, too. This is funny because Daddy has a very distinctive walk... and those of you that know him know exactly what I'm talking about. So now... the two have the same shoes to complete the look. Noah insisted on wearing these shoes today once he saw what Daddy was wearing. Then he proceeded to point out to anyone that would listen that they were in fact - just like his Daddy's. 

I find this very cute and very fun... but now that he is into video games (oh yes... because of Daddy) and surfing (oh yes... because of Daddy) and going in the truck (because Mommy gets lost in the van...) I find myself holding onto his hand and squeezing just a little bit longer before he wriggles to let go. I want him to be a baby for longer. Look at his foot size! He is just four years old and he already  looks and acts like my little man He even whines just like his Daddy...

But at the end of the day I wouldn't want it any other way.  I fall in love with Brien all over again when I see him be the goofy guy I fell in love with to get a smile from Noah.  Onwards and upwards!

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Up, up and away...

1/29/2011

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Cecily is styling and she's ready to take her fancy feet up, up and away! This week she put her hands up and said, "up!"  This is another word to add to the Cecily library and we couldn't be happier.  The word sounds so cute when she says it with her pouty lips hanging on the "p" sound. I wish this blog had audio because I would replay her sweet sounds and share the joy.

Not as important - but still a first -  she let me put these adorable shoes on her feet! I had to buy these pink, sparkly, over-the-top, shoes! They were calling to me from the shelf...and they look even more precious on her tiny feet. I like to blame Grammy for all the pink in her wardrobe but I had my chance to pick anything and here we go... more pink! It is her first pair of big, girl shoes.  I know her therapists and teachers prefer her to not wear such things but every now and then we must suffer for fashion! (Just kidding!) I bought them for a special occassion (her photo-shoot) and now they are eye candy in her room.  Noah thinks they are such "girl shoes Mama!"  I think they are perfect for Cecily. They are pure fun and all girl! We had a lovely Saturday and I'm looking forward to a relaxing Sunday with the kiddos and Daddy.  Onwards and upwards!
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Let Your Voice Be Heard!

1/26/2011

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I am simply reposting an email that I received today from the Arc of California. If you have a loved one that receives services from the state - please take the time to read this blog and take action. 

Dear families, friends and community partners,   
 
We would like to bring to your attention a very important advocacy alert from The Arc of California. Please read this and take a few moments to let your voice be heard by calling, faxing or emailing your state legislators. This is our opportunity to take a stand on what cuts we want the Governor to make or NOT! 
 
The Arc of California
 
January 24, 2011
 
Our community is facing its most serious threat in many years.
Governor Brown's proposed budget cuts would gut the Lanterman Act's promise that people with developmental disabilities will get the services and supports they need to live full lives in the community.
If the cuts happen, you could lose all of your services. There is no way to know until after they pass, if they do. This is serious.
The Arc and other disability organizations are fighting in the Capitol to protect our community's services. To limit the damage, we need a strong show of support from the community. That means you and the people you know throughout the state.
I'll tell you more about the threat, but first, here's what I'm asking you to do:

Come to Sacramento on Thursday, February 3, and Thursday, February 10, the dates of the Legislature’s only public hearings on the developmental services budget. We need to fill the hearing rooms with people who are ready to tell the legislators what the real effect of the earlier cuts has been and what the likely categorical reductions and service eliminations would mean to them and the ones they love.
 
Call your local state senator and assembly member this week and give them the same message.

The threat is caused by the state's massive budget shortfall, probably the worst since the Great Depression. To balance the budget, Governor Brown has proposed more than $12 billion in cuts and about the same amount in revenue increases by continuing some existing taxes by five years.
 
In developmental services, that would mean cuts to services of more than three quarters of a billion dollars -- real, new cuts, over and above continuing the much smaller 2009 and 2010 cuts. The total cut this year would include the federal matching funds we would lose as a result of the state fund cuts.

It's hard to grasp how much a cut that large would reduce the Lanterman Act services, especially because the governor hasn't said exactly where the ax would fall. The state could eliminate all the regional centers' operating budgets and still not cut that much.

We do know that most of the cuts probably would come from imposing what are called statewide "service standards."

"Service standards" sounds good, doesn't it? But what it means is simply eliminating the IPP team's ability to pick the services and supports that the person with the disability needs, the key promise of the Lanterman Act. The 2009 caps on respite care and Early Start are the most recent examples of "service standards."

Under the Lanterman Act, IPP teams write plans to reflect the specific needs of individuals, but with the cuts being proposed this process would certainly be harmed dramatically. Let the policymakers know how the services and supports benefit you and the real consequences to your life and the lives of your family members.

Real life consequences to real life people throughout the state are the kinds of things you should communicate to the legislative committees in Sacramento and to your local state senator and assemblymember. Tell them the cut is just too big to bear.

Here is the best information I have as of today on the committees' public hearings:
Assembly Budget Subcommittee on Health and Human Services, 9:30 a.m. or later, February 3, Room 4202, State Capitol, Sacramento.
Senate Budget Subcommittee on Health and Human Services, 9:30 a.m. or later, February 10, Room 4203, State Capitol, Sacramento.

And here's how to call your local state senator and assemblymember, if you don’t know who they or how to call them:
Click on The Arc’s Legislative Action Center: http://capwiz.com/thearc/state/main/?state=CA&view=myofficials 
 Enter your ZIP code and click on “Go”
Scroll down to “State Senators,” and click on it.
Click on “contacts” and call your senator’s Sacramento office (unless you know someone who works in the senator’s district office).
Do the same with “State Representatives.”
 
When you call, get the name of the person you’re talking to. Think of this as the beginning of a relationship. Tell him or her why you care, and that Governor Brown’s proposed cut in developmental services is just too big.
And I hope to see you in Sacramento.
Thank you for your advocacy.
 
Greg deGiere
The Arc of California
GregD@ArcCalifornia.org


Together we can make a difference. Onwards and upwards!

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Lights. Camera. Smile... yeah right!

1/25/2011

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This week Cecily's Closet had not one - but two professional photo shoots! What a mind blowing experience for our teeny, tiny charity.  The first was a professional shoot that captures our most recent room makeovers for Barris and Kensington. We're so excited for the magazine to go to print so we can share these creative and imaginative spaces with you.  The second was an equal surprise and a wonderful opportunity for us to share the spirit of Cecily's Closet with the community.  Cecily will be featured on the cover of the San Diego Family Magazine directory for children with special needs. We're not sure when both mags will go to print but you can bet we'll be posting the pictures!

The two shoots could not have been more different. The first one was a breeze in comparison.  The Art Director arrived, took his time, shot the room and got just the right photograph! He even took the time to teach me a few tricks so we can do a better job of shooting our future rooms. 

The second shoot was another story entirely. I have a new appreciation for all the Pottery Barn Kids catalogs and Parenting covers where the child gazes into the Mom's eyes or arms as if they were floating on a cloud. Our experience was a little different.  Ok - a lot different! Cecily, like her Mommy, is not a fan of lights, camera and people staring at her! I had to smile when she refused to smile after hundreds of photos were snapped. (Thank goodness for digital!)  She is one stubborn cookie.  She worked the shoot - or should I say she worked all of us - me, the camera, the Art Director, the Marketing Editor, the very patient photographer and her adoring, Daddy.  We were so amazed at how patient everyone was.  I think when your child is crying you feel like you have somehow failed and that you should be able to cajole her quickly and make her smile with just a magic flash of the hand. (This is not how our little Cecily works!)

It took us more than one year to earn a smile from Cecily and so she does not just hand them out to anyone that passes by. No. A smile from Cecily is hard-fought and well earned. A smile from Cecily expresses every little joy in her body from her nose to her toes. She has the goofiest little grin and when I see it the worst day can turn into the best moment ever. She smiles with everything she has inside of her and she wriggles, shakes and implores you to smile back, bigger, brighter and bolder.  Cecily gave us one (yes one) smile during the entire 90 minute shoot. The amazing thing is the photographer was so skilled she captured the moment!  That said, this was a very magical experience for me, Daddy and Cecily. It was a day that we will forever remember.  She may not have been having the best time of her life - but seeing her Daddy dote, dance, wiggle, play with dolly and my little pony, scream, cry, bark like a dog, and a host of other antics that would make for a wonderful YouTube video... was priceless. If the folks from the magazine took away one thing from this afternoon - it is that Cecily is well loved!

We are so grateful for these amazing opportunities. We hope that it helps us spread the word, raise more money, and grow our charity so we can help even more families this year.  Onwards and upwards!








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The biggest blessing

1/19/2011

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We just finished our seventh and eighth room makeover. We are exhausted but elated at the same time. It was an amazing experience and one that I will not soon forget. There were many memorable moments but perhaps my favorite memory was when one of our teen volunteers was interviewing the family. 

I'll take a step back and say we had a small army on this project, including a fleet of teen volunteers from TVIA, Teen Volunteers in Action.  In addition, Cecily's Closet worked with our fabulous and talented designer and muralist, Inside Emily Dolton's Head, and our supremely gifted painter, PaintGreen, and a newcomer but a very welcome and needed addition - Ryan McDaniel's Contracting. The 3 professionals made these rooms come to life in a way I could never have anticipated or dreamed of! The professionals were supported by a lovely group of well-mannered, responsible, bright and energetic teenage boys! This dedicated group rolled up their sleeves and helped with every task from painting to cleaning, to building to shopping. We were not sure how we'd do with so many volunteers but by all accounts the weekend was a very big success!

Now back to my memorable moment... Cole, our interviewer took his time to come up with a list of questions to ask the family.  He was a natural and he adapted his questions to the responses he received.  I was very impressed as I don't think that is an easy thing to do without a lot of experience.

The family responded thoughtfully to the questions asked and they spoke from the heart about the misconceptions of raising a child with special needs.  I related in such a deeply and personal way.  A child with a disability is still a child first and foremost. To a parent there is not a difference. As a parent of two children, one with special needs and one without - I feel very passionate about creating a world of acceptance where labels are not put forth to define our child but rather to help with the assistance required to make a safer and better place for our children to grow and thrive. 

This is the thank you letter we received after our efforts.

 "I wanted to thank your team again for all  the hard work, creativity, time, and commitment that was put into the boys rooms. You guys have truly blessed our family with such an amazing gift, memories, and so much more that words cannot begin to describe to our family's gratification. It means so much that Cecily's Closet chose our family and I know that Barris and Kensington will have so many fond memories in their new rooms. We could only dream of having such gorgeous rooms and atmosphere for the boys, thanks to your organization that dream has become a reality. We are regretful that we did not get a photograph of you and Emily with the boys. We were so taken by the rooms that it slipped our mind. Once the boys woke up, they were so excited running from room to room playing. We look forward to hearing from you for future project so that we can also assist in helping other families dreams come true. Thank you again so much."

Onwards and upwards!





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Room Service Please

1/13/2011

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We're continuing our stay at Hotel de Radys in beautiful San Diego. The staff remains wonderful, the care first-rate and can you believe they finally have room service for not just the kiddos? If you're going to be in the hospital for longer than a few hours it is nice to know they are now offering resort-like ammenities. I could even run across the street (not that I would ever leave Cecily) and get my hair done for free! (If you saw me you may encourage me to ponder this a little longer before saying, no thank you!)

My Mommy radar was very off on this visit. I thought for sure we'd come by, see old friends, get rehydrated and recharged and be on our merry way. The doctors had other plans for Cecily. I can't say this has been an easy stay because that would be a lie... but we have learned a lot about Cecily and the information continues to develop with each test result. She is happily resting and despite all the poking, prodding, scanning, testing, and everything in between, Cecily remains happy. This is priceless as we arrived here because she was quite the opposite.

The good news of the day is Cecily is NOT having any seizures! This is amazing and quite remarkable news given some of the new movements our angel has been testing out on her adorable little body.  With care from Dr. Kling, Cecily's first-rate, caring and nurturing surgeon, and from Dr. Haas, a world renowned doctor, we can leave here (hopefully tomorrow) knowing that every nook and cranny of Cecily has been checked out! The GI team is just wrapping up on her tummy troubles and she'll be all set - good as new - and ready for her next adventure.

We miss our little Noah and Daddy.  It feels like we've been here forever but when Cecily is not feeling well there is no better place for her to be. We are grateful for all of the support.  We are grateful that we will get to leave here. We are sorry for all the children that will remain and for those that will not get to go home. It is a constant reminder to be grateful. To live each day to the fullest. To relish the joys and breeze over the silly things because at the end of the day they really don't matter. 

Time to place our order for dinner... I could get used to this room service stuff...Onwards and upwards!





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Showers... Mommies and babies!

1/10/2011

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What is better than one mommy? Two mommies! My very dear childhood friend and her wonderful partner recently adopted a beautiful baby with special needs.  It was one of the only reasons I would even consider putting Cecily in the car for a necessary road-trip to the Bay! It was pure joy to see my friend holding her daughter, caring for her and loving her in a way that all children deserve to be loved. She is a natural Mommy.  She has a big heart with so much love to share and this little angel will grow and thrive in her new home.  She is a very lucky little girl! To see this beautiful family together after their long fight was a gift and a reminder of how lucky we all are to be Moms! Is there any better role?

I cried when I saw my friend with her daugther.  I had to run to the bathroom to compose myself as I was overcome with emotion. It was just such a happy moment and I felt so privileged to be a part of their special day.  I wish all children could know the love that this baby will receive from not only her two mommies, but her extended family, too. The air was full of love. The smiles on everyone's faces and the energy at the adoption celebration was contagious. Perhaps there was something in the water...I think I got the baby bug again!

I am grateful to have such good family and friends. I am grateful for the lovely visit we shared and for the chance to hold this adorable, little girl. I am overwhelmed with the love my friend's have for their child and I wish this unconditional love for every child, every person and everyone.  What a beautiful place the world would be if there were more people like them.

We headed home quickly because despite the joy of the visit... Cecily was not herself. She wasn't sleeping, had trouble feeding and just seemed to be in pain for most of the weekend. We piled in the car and I prayed she would feel better.  Unfortunately she didn't and we were admitted to the hospital. She's finally resting and taking IV fluids while they test, poke and prod to get to the bottom of this latest hiccup.  We are grateful as our little ladybug is being watched by her wonderful medical team. Plus... she got to see Miss Stacy and Miss Katie - her all-time favorite Rady's nurses! It makes such a difference to see familiar faces when checked in at Hotel de Radys. 

I am now watching her sleep and I am wondering if perhaps I should take advantage of this very comfortable chair... She looks comfortable and peaceful. I hope that this will continue tomorrow.  Onwards and upwards!
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Water...

1/3/2011

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My little angel signed water today! This is a joyous celebration as it is not an easy sign and she did it a few times! It is time to celebrate. Pictured here...sitting pretty on her pink rug in her bedroom with her pink dolly... Do we have a problem with pink? Better ask Grammy... Onwards and upwards!

ps. We are so grateful to everyone for their continued support of Cecily's Closet! 2011 is going to be great!
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Happy New Year!

1/1/2011

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Happy New Year! I can't believe another year has passed. I feel old and silly saying that but alas I truly just can't believe that Noah is already four and Cecily is quickly approaching her second birthday.  We didn't make resolutions this year...but we are going to put our our feet on the brakes a little more this year.  Last year we had so many ups and downs and we likely took on too many projects! (no comments please!) We loved every minute but this year we're going to be better about accepting help and taking more time to just rest, relax and enjoy the little moments that often get lost in the shuffle of a busy day.

We're also going to be making a few changes to Cecily's Closet. With the approval of our Board of Directors, Cecily's Closet will change its nomination process for the Sweet Dreams Room Makeovers. We receive so many requests and it kills us not to be able to process many of them. So... we're going to ask Doctors, therapists, special ed teachers and even some of the agencies that help our amazing children to write the nominations on behalf of the families.  Our original charter was to only do four rooms in a twelve month period. We far exceeded that goal, completing seven rooms in nine months.  We may not be able to keep up this pace as we focus our efforts on our recycle program. There are so many children that need equipment to help them reach their full potential. We are dedicating more time and resources to this aspect of the charity in 2011. 

If you want to get invovled, please check out the areas where we need help! We're looking for volunteers in a variety of specialized areas. Learn more!

We're excited for this coming year and the adventures it will bring our family. As we sit around the fire tonight, both children sleeping, we are grateful for the support we have from family and friends, for our two angels, and for the opportunity to run Cecily's Closet. We hope that we can spread that support one family at a time in 2011! Onwards and upwards!



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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! Who knew being a Mom could
    be so much fun and so much work! Warning... this blog does not come with spell check...

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