There are days (despite my dislike for bragging) where I just want to shout from the rooftops... "My kid rocks!"... And today was one of those days!

This morning Brien, Cecily and I hopped into the truck and headed up to see our friends from the Intensive Feeding Program at CHOC.  It was our follow-up appointment from the program we attended in December.  The follow-up was supposed to be in March but since that brought a bought of pneumonia for sweet Cecily we had to postpone it until later.  I think postponing until May gave us the time we needed to really get our ducks in a row and build on the skills we learned over the holidays.

Cecily did great at her follow-up/evaluation. Cecily has been doing great at home so this is not a big surprise... but I really wanted the team to see the progress first-hand!  It is nothing short of miraculous to see a child that wouldn't even sit at a table before without screaming and throwing a tantrum willingly grab her lunchbox and ask for it to be opened.  She asked for juice but was still OK when that was not offered.  She happily chose foods and ate everything that was offered.  She did some self-feeding and even asked for more and requested preferred foods with her words and gestures.  In fact, Cecily showed all of her new skills from drinking independently to stirring her foods to eating and biting and chewing!  We were so proud of her and so happy that the team could witness the progress first-hand.

The team celebrated Cecily's success and it forced us to also take a step back and celebrate, too.  It has not been easy.  It has been anything BUT easy.  But we stuck to the program. We worked the program. (The program worked us...) We had food fights and some family disagreements over whether this was "right" for everyone.  We battled the spirited Cecily but when we look at where we are today we realize that every decision, every choice, every meal that took blood, sweat and tears to muddle through was worth it!  

We have A LOT more work to do!  (Oh the list... the long list).  But today, we celebrate!  She is eating 1100-1400 calories by mouth.  She is trying new foods. But perhaps more importantly - she is enjoying food and she is engaged in her world in a totally new way!  She is emerging from this very challenging time a more determined, more inquisitive, more open-minded, more verbal, more engaged, and best of all - HAPPIER - child!

Thank you to the Feeding Team at CHOC! Thank you Dr. Katz, Robin, Amber, Jen, Erin, Sarah, Jessica, Audry, Gin, Cindy, Tess and everyone at CHOC for making us feel part of the family. 

It was a wonderful day to see everyone again and to celebrate the AMAZING Cecily!  Believe in the impossible.

Onwards & upwards!

When Cecily was just a tiny peanut and we were confident something was wrong... but had no answers... we had something even better.  We had Mary from the Hope Infant Program. (seated to my left in the picture)

Mary was assigned to be Cecily's 0-3 Infant Educator.  This is likely the best present that God could have granted us.  At the time, we didn't understand the purpose of a child having an Educator at the age of 6 months. It seemed wild.  But our world was spinning and each day felt like a challenge. Looking back - I now can't imagine NOT having an Infant Educator. We needed Mary and her patience, her comfort and her dedication to ensuring we were providing Cecily with every opportunity possible.  

Week after week when Mary would visit I would feel guilty because I would spend all the time talking to her.  I felt like I was "stealing" Cecily's time (even though we were talking about her..."  I always felt so much better after her visits and It wasn't until we were almost graduating from the Program did I truly appreciate that it was Mary's role to listen, offer advice, and help ensure our family's needs were being met.  It wasn't until we were getting close to graduating the program that I truly appreciated all the blessings that program had provided not just to Cecily - but to our entire family, and especially to me. We will be forever in her debt.  The only peace I have with her passing is that we let her know how much we loved and treasured her.  She is without a doubt one of the biggest blessings in our life and she saved us during a time when we didn't even realize we needed to be saved.

To say she was a gift - is an understatement.  She IS a gift.  She will remain a gift.  She is still a force in our lives and I can hear her calm, patient voice and see her beautiful smile light up when we shared the latest Cecily news.  Mary would arrive at the house with her spirit shining and would breathe life in our home. She always included Noah. (Cason was yet to be born).  She would speak to Cecily and engage with her even though Cecily seemed to be somewhere else. She always gave Cecily time to process.  She believed in her and she waited for her.  And Cecily always responded.  She would give me endless ideas of things to try for Cecily from picture books, to visual stories, to sign language videos, to classes to embark on and schools to attend.  She would listen. She would help me with my struggles of how to balance a healthy two year old boy with an infant that required 100% around the clock care.  And boy - did she listen. She just had a way of making everything seem perfect - like it was supposed to be that way. 

Mary was present the day we found out Judy, Brien's Mom, passed away.  She was present the day I found out I was pregnant with Cason.  She was always present.  Without Mary, I don't think we would have been inspired to start Cecily's Closet.  We were so impressed with Mary and her compassion - and so grateful for the help she provided us and our family - that we wanted to do something loving for others.  

While attending Mary's memorial at the Self Realization Fellowship I was in awe of the person Mary was to EVERYONE. We only knew Mary in such a limited capacity but I found from hearing her brothers and sisters talk, and her friends, and co-workers - that we knew what mattered most about Mary - her spirit and her passion for life and the people she cared for.  It turns out Mary made everyone feel like he/she was the "most" special.  I can attest to this because I always felt like Cecily was her favorite!  I laughed at the memorial when someone said the same thing.  I knew she has a soft spot in her heart for Cecily but it turns out she had them for everyone! When she was with you she was really with you.  She gave you her heart, her time, and her passion.  She had a way with children - just like Cecily - and she connected. 

Mary always believed in Cecily.  It was Mary that scheduled Cecily's first play date with Miss Kate. (We are still friends today).  It was Mary who got Cecily engaged in horse-riding.  (We still ride today). It was Mary that made Cecily one of her most favorite books - a visual story about her swimming.  And it was Mary who attend the swimming class to see Cecily and her brother in yet another environment.  

Even though we graduated from the HOPE Infant Program two years ago - we would still send Mary updates because we knew it was because of Mary that Cecily was doing so well. She provided our family with what we needed during that challenging time.  She provided hope. She provided love. And she had faith in us that we would be able to weather all the storms and be the source of strength and light for Cecily.  Mary provided us with the foundation required to raise a child with special needs and see the blessings - not the challenges.

We are so sad that Mary has passed but we know her light and spirit will live on.  Thank you Mary for providing us with the roadmap required for our journey. I know you will continue to guide us from above.

Her dedicated family has set up a scholarship in her memory.

Mary's Lasting Gift

RBCPC Preschool is a school where all children can receive a loving, inclusive preschool education. It was a special place for Mary and it is a community that will be forever enhanced by Mary's passionate dedication.

Donations can be sent to:
RBCPC Preschool
Sharing Lives Program
17010 Pomerado Rd
San Diego CA 92128

In the mom section please add: Mary's Lasting Gift

Onwards and upwards!

We have had a busy run late... surgeries, hospital stays, job challenges, IEP meetings, school transition plans, new schedules, new everything.  Change is often scary... and it can lead to more stress. But as we wind down a very hectic period in our little house we take a minute to remember the fun times we had while we weathered yet another storm.

The kids are thriving!  It seems every time we step into a pile of "something..." that the kids rally and get stronger. Cecily is our little trooper. Her body battles against her every day and yet she is emerging with her new care plan with even more strength and endurance. Her world is opening up and she is talking and sharing more and more of her thoughts with us! Each day brings a new experience.  She has a new school, an updated IEP and a new teacher to guide her forward.  We are thrilled with the changes and excited to watch her bloom.  We are already seeing her talk more and express herself! Go Cecily Go! AND... yesterday at breakfast she fed herself eggs. This is pretty much a dream come true.  Her eating skills are getting stronger and stronger and we see a path to "typical eating" within her reach.

Noah is growing into a big boy. I am so proud of his accomplishments but they pale in comparison to his spirit and smile. He is always ready to lend a hand and he actually likes playing with his baby brother and sister. He includes them always... and only rarely gets mad when they mess up his stuff. (And they mess it up a lot!)  He has his own blog now and he shares his special stories and his thoughts. He has so many things to say when we take the time to listen and fuel his hunger for learning and self-expression. 

And then there is our joy, Cason. The happiest baby on the block brings us endless joy and fun. He gets into trouble every hour of every day but he does it in such a way that we have to laugh and smile. He has taken to saying, "Oh Man..." anytime something does not go his way... and his expressions are nothing short of priceless.  He is a danger to himself and thinks he can do anything Noah does... but he will get there.  

Brien and I are just relishing this time and trying to remember it won't last forever. The joy of young kids is the best present. And we can't believe how fast the time is passing us by.  We are looking forward to beach days and zoo trips... some mini-local vacations and making sure we take time for each other. 

We have realized that life will be a roller coaster for a long time.  But... if we remain a team - a family - and make all the hard decisions together - we will be OK!  Our life is far from perfect.  We are struggling to ensure we are doing right by all our kids. It is hard to find the balance so every child feels loved and appreciated and not neglected. 

We are grateful for Mom and Dad, Grammy and Grampy, for holding us together with their love and patience.  And it takes a lot of those... And thanks to our wonderful nanny, Clarisa, who is without a doubt a miracle worker with all three kids.  I am not quite sure how she does it... but we are so lucky and grateful to have her helping us find the fun in each day and her extra help enables us to enjoy the kids and make the hardest of days still a bundle of fun.

When we see the smiles below we know that we're doing something right. The kids are happy.  What more can you ask for?  Family. Family. Family!

Onwards and upwards!

Reposting and sharing...

Click here to watch https://www.youtube.com/watch?v=evjbx9_RiMY


Ethan’s story – Breaking the autism glass ceiling is a video that has provided hope and inspiration to
families in over 85 countries.

The theme of the video is hope and inspiration and we are
trying to show parents of autistic children that there is a way not matter what
the experts say.

The number of children being diagnosed with autism is
increasing at an exponential rate. Currently 1 out of 50 boys are diagnosed with
autism. I am one of those parents who have been living with a boy with autism
for 17 years. Through the years, we have recorded our nonverbal autistic son
Ethan’s journey, and now we would like to share it with you!

 Many parents of children with autism have been told by the experts that the best outcome they can hope for is an adult group home for their
child. It is for these parents that we created this video full of hope and
inspiration. Ethan was one of these children, told by the “experts” after
conventional methods did not seem to be working, that Ethan would never read,
write, or do ordinary academics. Ethan has proved them wrong! Through hard work, patience, and an alternative teaching strategy that begins with believing the child can learn and thinking outside the “conventional” box, Ethan has learned what was deemed impossible.

We are asking that you take a minute out of your day to view
our video and forward it to as many of your contacts as possible, in order to
reach the parents who need it most. As a non-profit dedicated to educating
children with autism, we are trying to send them a message of
hope.

 We started the process 8 years ago and only now have we begun
to publish “How To” videos in order to train others on the successful techniques
that we have developed. 

About Ethans story
Ethan is a 17-year-old nonverbal boy with autism and verbal
apraxia. At the age of 10, the experts said he would never read, write, or do
math.  Here at the Alternative Teaching Strategy Center, we firmly
believe that these children do have the mental capability to learn, and by
teaching these kids as if they can learn and are smart, they will
learn. Today, Ethan is doing advanced math including algebra. His
reading comprehension is amazing, his handwriting is legible and improving
daily, and he types 65 words a minute independently.


Thank you in advance for your time and support and please
forward our message of hope!

“We believe in ordinary acts of bravery, in the courage that
drives one person to stand up for another.”

― Veronica Roth, Divergent

Onwards and upwards!