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Cecily's Closet recognized by NCCSE

5/29/2013

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Thank you to the North Coastal Consortium for Special Education  (NCCSE) Community Advisory Committee for recognizing the work of Cecily's Closet for excellence in supporting students with disabilities and their families.

We are honored and humbled by this recognition and we are so grateful to our amazing support team at the HOPE Infant Program for nominating us for this award.  It was inspiring to hear from all the wonderful teachers and administrators that are making such a positive impact for children with special needs in San Diego.

This award is for ALL the parents, Moms, Dads, and extended family members and friends who collaborate with Cecily's Closet to help us accomplish our mission of spreading love and hope to children with special needs.  It is because of each and every one of you that we're able to make a difference for so many amazing children in our own backyard.

We are inspired to keep on trucking!  Cecily's Closet is all about giving back and taking advantage of the gifts we have been given to help others achieve their goals.  We say it over and over and over again but Cecily's Closet is a direct response to the love, care and support we receive from our family, friends and our community. Thank you to Cecily's amazing 0-3 teacher, Mary, who truly set our family on such an amazing course by believing in Cecily and helping us to manage the opportunities of raising a child with special needs.  You are such a gift to the community and we are just so very grateful that we were able to have you as Cecily's teacher. You are and will always be the person we credit with keeping us on course!

We're passionate about what we do and we're just so grateful for this award! Thank you for honoring our little operation and believing in us!

Onwards and upwards!


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Noah's Wish...

5/27/2013

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We had a lovely, relaxing, family-filled Memorial Day Weekend. It
was dare I say perfect? It was just so nice to spend the entire weekend loving on the kiddos, not working, ignoring all sorts of responsibilities and just playing! We hit the beach like everyone else in town and managed to find a parking spot out front - effortless! We had no tantrums, just sandy, good times!
Noah caught his best waves yet with Daddy and Daddy was so very proud... I love Brien for a million reasons - least of all for putting up with me. (I can be dare I say a challenge?) Haha. But I love Brien because he is that Dad that does
not project himself onto his children but rather supports the direction they are going. For example today - Cason wanted to Cecily's pink shoes. Her very, pink shoes! So he just put them on his feet and he was happy walking around with his manly baby, in very pink shoes! And I love Noah because he said - nothing wrong with pink. Now purple... I don't really like purple but I think hot pink is cool.
Love my boys. And this weekend when Noah was dying to get into the water Brien was so quietly proud. When Noah caught his longest wave and rode like a champion Dad was quietly proud - not bragging, not hooting - just soaking it in with a few glorious fist bumps. Sadly - I missed most of it because I had my hands full with two toddlers and buckets and buckets of sand. There is nothing Cason won't eat... sand included! Cecily made her own sand castle and happily played for hours with no assistance required. It was glorious. When she heard me mention a possible return beach trip she promptly through 2 hands in the air - her way of saying yes, me too! Let's do it again! She even tried to say beach with a glorious burst of "b" sounds!

We got to celebrate my dear friend Julie and her lovely family on her birthday! It is hard to believe that we've been friends for more than 30 years... but childhood friends are simply the best of friends and we couldn't be happier that Julie & JC and their two precious boys live here in San Diego.  We just need to get together MORE!

But perhaps my favorite memory from this very relaxing weekend was Noah's response to my simple question. I asked Noah if he had one wish - and he could do anything, have anything, be anything, or give anything... what would he wish for. He looked at me and said, "Legos... I'd wish for Legos" before saying, "wait! No. No. If I only had one wish and I could have anything I'd want 10,000 brothers and sisters. They are the best!"

And this is why I love this kiddo. There are times when I'm not sure how he got to be such a wise, old soul. He let Cecily give him upwards of 50 cuddles this weekend. He just lets her steal his toys and he does all sorts of funny things to keep her calm and quiet. He is ok with Cason drooling on all of his stuff. He has tolerance for baby slobber and has no problem checking to see if his little brother or sister left a "woo woo" in his/her diaper. His patience is endless and reminds me of my Dad. I am so grateful for this little guy. There are many people that don't get to see this side of Noah because he's too busy trying to get his place in the sun. Cecily gets so much attention and Cason - just being a baby - gets so much attention. Yet here is my six-year old wishing for MORE babies... and more siblings. Love him!

We are so grateful for family and friends and a lovely we

Onwards and upwards!




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Prove 'em wrong baby!

5/23/2013

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I was so excited tonight after I logged into the Cecily's Closet site tonight.  Some of our most popular search terms (the terms that lead people to us on the Web) are hope & love.  When we founded Cecily's Closet our mission statement seemed "too soft" and undefined.  I stood by it because it is truly our mission - to spread love and hope to children with special needs - and their supportive families.  The fact that people with kids of special needs are looking for hope & love only confirms what I believed - and still believe!  What is more exciting is people are searching for success stories for infantile spasms and THEY ARE FINDING US!  I am so happy about this because that night in the hospital when we received that diagnosis I wanted to crawl into a blanket and have a good cry.  I'm not one for crying (many of you may disagree after recent events...) but I really do pride myself on trying... to keep it together! (yes, haha... I don't keep it together but the emphasis in that last statement did have the word "try"! 

Ramble ramble.  I am just so excited that Cecily's story may be the beacon of hope for some families that receive that startling diagnosis before a child is even 8 months old.  I am passionate about spreading hope to others and to show people that a diagnosis is just a guide - you have no idea what your child, your unique and special child can do - unless you give them the room to prove everyone wrong!

There are nights when I question whether all the hard-work for Cecily's Closet is making a difference.  Failed grant after failed grant it is hard to convey the value we provide to a Mom or Dad that may need help.  But today - seeing that people have found us by searching for a success story I'm invigorated and excited! 

Today Cecily screamed when in a hurry I didn't provide her the usual opportunity to pick out her clothes.  I chose an adorable outfit and proceeded to get her dressed for school.  I realized as she tore at the shirt that she was mad and she felt unheard.  I stopped and told her big girls use their words or their signs.  I reminded her how smart she is and that she needs to use her new skills to explain to silly mommy what is wrong.  She said, in her beautiful voice, "no, that one!"  OMG this is a gift! My little diva communicated with a tantrum over a clothing choice but then used her words to ensure I heard her when the tantrum just didn't cut it! I am so proud of her.  

Almost four years ago when I was desperate for hope I googled and found a success story for Infantile Spasms.  To think that some stranger in a cold, lonely hospital room may be doing the same thing and reading about our mircale child who is proving the impossible possible makes this all worth while and more!

Onwards and upwards!






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Dance with Me! - check it out

5/20/2013

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Dance & Company Performing Arts Studio is now offering a Dance With Me class for children with special needs.  Come join Cecily and her friends as they enjoy the power and movement of dance!

Classes start July 9th!

See more information below.

Onwards & upwards!

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Turning the corner

5/18/2013

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After a very long week - Cecily and Cason have finally turned the corner!  This was not an easy week - and after a long hospital stay it was a less than ideal homecoming.  But the good news is everyone is finally feeling better and we have a house full of smiles and laughter again.

This week forced us to reflect on how far Cecily has come.  Our life used to be full of weeks just like this one... sleepless nights, pain, and suffering with no medical answers - not knowing what is happening or how to help.  It is amazing to me how a simple bug can lead to a week of misery for her - something that a typical person would likely be able to fight off with some antibiotics.  We are just so grateful that we have our spunky, sassy and fiesty little angel back! 

Today we had a wonderful day full of our traditional Saturday fare - soccer, skateboarding and surfing. It was so nice to be together as a family!

Onwards and upwards!
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Open the Door to Your Heart

5/14/2013

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Please buy tickets to this event! You can help to make the difference in the life of a child.

Onwards and upwards!
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A Mother's Love

5/12/2013

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Happy Mother's Day! On this day I'm especially grateful for my own Mom whose constant love, devotion and support not only opened up so many doors for me throughout my
childhood - but provided me with the confidence to walk through them. She was and is always there for me, holding my hand, pushing me forward and holding me steady when life gets challenging. As a Mother to three, I am so grateful to have her love and guidance to help me and Brien raise our children. It is a blessing that we don't take for granted. I can't imagine how much better off the world would be if every child was gifted a Mom like mine. (And my Dad is pretty cool, too!)


On Mother's Day I'm also reminded again of just how lucky I am. I am so grateful and blessed to have not one but three beautiful children who make my life so full, busy and wonderful. I always thought that when I was a Mom I'd have "stuff figured out..." but I don't! I continually make mistakes, second-guess decisions, and utilize the bribe, guilt, threat (triple threat) parenting method when things don't go my way! (And for the record by threat - I mean... "No dessert" or "no play-date!") I want to be the very best Mom I can be. I worry that I'm not doing enough - or at times that I'm perhaps doing too much. I worry that I've set the bar too high - or perhaps I've not pushed hard enough. But the one thing I do know with 100% certainty is this: I love my kids more than anything in the entire world. And I'm pretty sure that 100 kisses a day, lots of love, smiles, the ability to listen, the ability to say I'm sorry and always providing a shoulder to cry on will keep us moving forward one day at a time as a family.

I absolutely adore being Mom to funny Noah, sweet Cecily and joyful Cason. I can't imagine my life without these three amazing bundles of love, energy and happiness. Each day with these precious angels is a gift. My children teach me every day about what is important in life. They each face the world in a unique way and it is their differences that make them so very special. There can be no better gift that seeing the children play together. I have so much more to learn but I have the three best teachers helping me along every day.

Happy Mother's Day

Onwards and upwards!

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Complications...lead to popsicles!

5/8/2013

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My rosy hue glasses needed a steam cleaning less than 24 hours after our discharge... and they got it by way of the freezer aisle!

Cecily's sweet arrival home was upset by an unknown infection that we feared stemmed from her surgery but appears to be now unrelated and likely just a parting gift from our stay at the hospital!  At lease we have a clean track record... we seem to always take our bags (and a few bugs) home with us just to keep things interesting!

The fear of getting readmitted rang in my head as Cecily wouldn't tolerate her feeds and continued to spike fevers (only to have them disappear) and then reappear with a vengeance.  It is days like this where I wish to scream and shout and haved a good tantrum.  (And I've learned how to have one from the best of the best!) But... I'm the Mommy so that is not going to happen - at least not while anyone is looking!

But through it all - the restless nights, the fevers, the wretching, the recovery from her surgery... Cecily continues to power on!  In fact, she amazed us today and I'll just focus on this very big win! Cecily ate an entire popsicle today! Yes, the entire thing - from the top to the bottom.  We think her sore throat and inability to tolerate her feeds has made her so hungry with discomfort that her nemesis - eating - seemed like no big deal today! We are so proud of her!

If it weren't for this surprise infection Cecily may not have discovered her ability to eat a cherry flavored popsicle. I just wish I had taken a picture... Her snow white skin against the cherry red pouty lips was a sweet sight!

So the motto for the day: it's popsicle possible! She also drank what I would estimate as 16 ounces of water!  A first for sweet and stubborn Cecily!

Onwards and upwards!
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Home Sweet Home...again!

5/7/2013

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We're home from the hospital and getting back into our routines. We are so grateful to have such an amazing medical team looking after sweet Cecily. I always feel she is getting the very best care and Dr, Karen Kling is our very, favorite surgeon! She does such a lovely job of explaining everything to us and walking us through every aspect of Cecily's journey. We had a lovely stay at Hotel de Radys - but it is time for the home care to begin!

The one good thing about going to the hospital is coming home is really wonderful! I appreciate the little things and don't dread the silly things in quite the same way.  For ex., typicaly at say 5 ot 6pm I'm in full Mommy mode trying to get the kids bathed, fed, and ready for bed at 7...which usually ends up being 8! I often feel like I'm racing but LOL - who am I racing? Tonight despite being sleep deprived and exhausted beyond repair - the art of making dinner seemed quite mellow and dare I say enjoyable?  The incessant, "I'm hungry... no not THAT again..." and typical musings from my lovely Noah were sounding extraordinarily cute! I was not miffed that I burned the fish (no real surprise) or that my angel Cason seems to be reaching that "T" for trouble phase where every step is a step towards Danger! He has a way of finding cords, sharp objects, and other dangerous "things..." within a matter of seconds and he can bump his head on just about anything even when he has my full attention!  But... while the boys played and Cecily happily sat in her princess chair (I believe she seriously missed her throne" ... I just smiled.  I was so happy to be back in the buzz of our house. I was so happy to be surrounded by my parents and the chatter of the day.  It was not mundane. It was not boring. The chores felt more fun that work and I didn't even mind cleaning up post dinner despire the sleep deprivation.  I felt oddly FREE!

I guess after multiple days of being glued to Cecily's side in her hospital bed has provided my glasses that lovely rosey hue and I only hope that this time I don't let the color fade under the glare of work, silly drama or even the stress I often create for myself with Cecily's Closet.

Like every stay at Children's Hospital I exit enlightened. I see families that are just embarking on the joy of g-tube feedings. I see the fear and anxiety and it reminds me of when Cecily's tube was first placed.  I see children that have long roads ahead of them and I can see the weight on their parent's faces.  I paced the hospital endlessly this visit holding Cecily and pushing her IV pole up and down every floor - from Med Surg to the Surgical Suites - to the Cafeteria and anywhere I was permitted to go - inside, outside, healing gardens etc.  What did we see? We saw pain, stress, patients in all states of disarray but we saw plenty of smiles, too.  I think the gift of having a child that has to fight for everything is the gift of appreciation for the simple things.  This hospital stay was not easy.  There were moments when I held back tears, anger, frustration and fear. But... those feelings help to shape how we will carry on at home. They will help to shape the priorities we place on "stuff" and "work" and the ever important balancing act. 

It's easy to complain.  It's harder to admit that you're not perfect. That you make lots of mistakes. But that you're ok and you're human and tomorrow will be another chance to be the person who want to be. 

What's important tonight. Cecily is home! The family is back together. I just hope she can get some sleep - and me, too!

Onwards and upwards!




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Trooper! What's the big deal? Just another surgery,,,

5/2/2013

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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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270-F N. El Camino Real #457
Encinitas CA 92024

Cecily's Closet  -  Tax ID 27-2245113