Onwards and upwards
We started Cecily's Closet with the simple premise of spreading stories of hope and love to children with special needs in San Diego. We were not trying to do much - just inspire a few families and hopefully pay forward the kindness shared with us by our family and friends. We hated searching on the Internet and finding negative stories. We hated living with limits being placed on Cecily. Instead we decided to follow our own path and we agreed as a family to take the good with the bad and to celebrate the little wins along the way. We refused to accept the reality that was put forth by Cecily's medical team. We refused to have our hopes dashed when we were told that Cecily may never talk or walk or have the quality of life you dream about for your children. So instead, we took the words of the Doctors... "we don't have a crystal ball" and turned the tables. No one has a crystal ball but everyone is entitled to hope! We will never stop believing in our angel. Today Cecily proves the impossible possible - yet again. Captured on video by a dear Mom at Cecily's pre-school - her first steps. Go Cecily Go! Seeing is believing!
We are so very proud of Cecily and the amount of work she has put forth to make this possible. She has a long way to go but this fills us with hope! We hope by sharing this very personal video that we celebrate ALL children with disabilities and the amazing blessings they bring to us. We hope it inspires you the way she inspires us! Never stop believing!
Onwards and upwards
Look at Mr. Cason... six-months - heading towards seven very quickly - and cute as can be inside and out! As far as he is concerned life is one big party and he's always invited. He is the happiest baby on the block and we celebrate him daily! He is the best medicine on the toughest of days. He just opens up those baby blue eyes and smiles so big that you can see his cheeks from the back of his head! He is chubby as chubby can be - and is just a few pounds less than Cecily now. In fact, they are sharing diapers!
Who knew that having a third child and adding to our busier than busy schedule would be the best surprise possible! This is truly the good stuff! We adore him and we are always amazed how he just goes along for the ride - and there are a lot of them!
We're celebrating this week and the list is LARGE! Oh yes! We'll go by age... Mr. Noah was recognized at his school assembly and we couldn't be more proud of him. He works so hard and loves school so much - to see him run up to get his award just put a big grin on Brien's face and mine, too. He was so happy and pleased with the recognition - and the Cardiff Way ticket... It seems that he is growing into a more confident and self-assured little man every day. We reluctantly credit a lot of this to his skateboarding... I was secretly hoping it would be a passing fancy but this weekend he dropped in (unsuccessfully but that is not the point) on the concrete bowl. I have been dreading him attempting this but he was unfazed by it... He just wanted to be where his friends were and have fun at the park! Noah continues to be the best big brother. He amazes me with his patience. He asks a lot more questions now that he has another sibling to compare Cecily to - BUT... he is still there to cheer her on. He was so excited when Cecily had some of her big succcesses this week. And they were...
1) She walked! Yes - she walked! This should be a blog post on its own but I'm saving that for when she does it on a continued basis. But ... we will celebrate the win by saying she walked between 2 objects by letting go - taking a few steps - before catching herself on the next object. Like Noah, we see her confidence growing. She is so proud of herself and she often stops to clap and to look around to ensure that we are also clapping! And of course we are!!! We don't let these milestones pass by without a big 'ol party!
2) Cecily is learning her letters! She correctly pointed to 4 random letters on our alphabet board today. To say I was happy is an understatement. I am always telling everyone she is smart - and this is NOT just to combat all the "pretty" comments. For the record - I am guilty of telling her she is cute as pie but I'm very quick to tell her just how smart Mommy thinks she is! She was grinning from ear to ear when we celebrated her success
I'm sure there were more little victories but I'll skip to Mr. Cason. He is just our happy clam and as he hits his milestones without a care in the world we thank God for the blessing of a healthy child. Admittedly it is sometimes startling to see just how easily he does things that we have worked so very hard for with Cecily. But we quickly try and put those thoughts aside and just thank God that he is off to the races! He is so close to crawling and it won't be long before he is into all kinds of trouble. I love hearing him call for me and say Mammma. He draws out the sounds and I relish every one. I love to feed him. It is not a chore. It is a gift. I love watching him anticipate every bite of food. He loves to eat. He knows the good stuff - and he is eager to get it all into his fabulous and bulging belly. He gives the most sweet cuddles and nuzzles and is always holding on and patting us and looking for his big brother and big sister. He is just the happiest little monkey and we feel like life is finally going in the right direction.
Cecily's Closet just completed its 27th makeover! It is hard to believe that in less than three years we have turned an idea into a very small but very passionate non-profit! We are so excited about the future of this organization and we are so very touched by all of the wonderful people we have met that have stepped forward to support our mission of making a difference for children with special needs in San Diego.
We're looking forward to even more good stuff! We're on a roll...
Onwards and upwards!
Wake up to the alarm and get moving because lately there is zero, nunca, nada downtime! What do I mean by this statement? Let's take a look at what a 24 hour care plan for Cecily looks like hour by hour...
Kisses!!! Lots and Lots of Kisses!!! Just imagine these are inserted EVERYWHERE in this timeline. And sadly screams - hmm... lots and lots of those, too. But the kisses are much better so just imagine those!
Buzz...alarms are buzzing!
5:30am - turn off feeding pump; flush tube and check blood sugars
7:00am - vent tube; administer meds; flush tube and check blood sugars
7:40am - vent tube; administer cornstarch; start pump
8:15am - stop pump; flush tube
9:45am - check blood sugars
10:00am - vent tube; administer cornstarch; start pump
10:35am - stop pump; flush tube
12:05am - check blood sugars
1:00pm - oral feeding; administer cornstarch; start pump
1:35pm - stop pump; flush tube and attempt to put Cecily down for a nap!
3:05pm - check blood sugars
3:30pm - vent tube; administer cornstarch; start pump
4:05pm - stop pump; flush tube
5:00pm - check blood sugars
5:30pm - vent tube; administer cornstarch; start pump and oral feeding
6:05pm - stop pump; flush tube; bathtime!
7:00pm - vent tube; administer night meds
7:35pm - check blood sugars
9:30pm - vent tube; administer cornstarch; start night feeds
12:00am - check blood sugars
3:00am - check blood sugars
5:30am - wake up and REPEAT!
Hugs!!! Lots and Lots of Hugs!!!
Oh... and of course that is just the feeding regimen...and if her blood sugars are low it sets off another series of tasks that are much less fun and much more stressful! Add-in all of Cecily's activities: pre-school and 3-4 therapy appointments a week + the medical appointments and don't skip those diaper changes and you're looking at one busy kiddo...And that makes for one busy Mommy and Daddy!
There are moments during the day when I can hear all of the alarms ringing telling me what to do and I just want to scream - NO! The very thought of mixing more cornstarch or poking sweet Cecily to get a drop of her little blood to test her sugars exhausts me. And then I think what about her? She is the one enduring it all. She is the one getting poked all day, tethered to a machine and pushed and pushed with very few freedoms. It is amazing to me what she endures and that for the most part (tantrums aside) that she is a very happy little girl. I see her smiling face and I look at all three of our amazing children and think this is no big deal!
So what is a big deal?
Tonight Noah told me he loved me to the moon and back - the moon and back - the moon and back TIMES infinity! Cason gives me the biggest smiles and happy feet kicks and his face is brighter than sun when I've been gone and return into his line of sight. It fuels me. And then there is Cecily... admittedly down but NOT out! The little monkey is doing her best walking, climbing and talking. She is singing parts of the Elmo song... she makes the sweetest lalala's and everytime I see her dancing to it and singing I just think to myself... I can do this! LaLaLa...
Onwards and upwards!
Noah, Cecily & Cason's Mom
Follow the ravings, rantings, stories, and challenges of a Mom of three as she