2012 is off to a great start. Sure, we may have had a hospital stay to add to the medical records but that can't compete with the list of accomplishments our precious little angel and patient big brother are racking up! Where to start?
Cecily is pushing her little chair around the house and will now walk if you hold both of her hands! Walking!!! Noah was so excited for Daddy to come home to see it. We had a family breakfast with Grammy and Grandpa and Grandpa Bob and Cecily showed off her new skills. I couldn't have been more proud. And I was equally proud of Noah for cheering the loudest and giving her such big hugs for her amazing work.
After falling back on her eating Cecily is again back to taking tastes via mouth. Over the last few days she even signed that she wanted more! And speaking of signing... Cecily is using her signs more and more to communicate her needs. The other day instead of a tantrum when I tried to leave the playroom she signed Mommy play with me. :) Yes! Today she signed a few of the pictures in the book we were reading and we are rejoicing at every word.
And then there is Noah! He is always the little ham of the house but he's taken to dancing with a guitar to make Cecily giggle and it works. He is always down for physical comedy and Cecily finds him giggle-licious! Watching these two laugh and smile and enjoy each other is simply priceless! (We are also proud of Noah's latest monkey bar accomplishments...) He is our monkey and we love him for keeping us on our toes and reminding us not to take ourselves so seriously.
January has brought some wonderful things for Cecily's Closet, too. We've had more and more people reach out to us and share their stories with us and offer to help. We are overwhelmed. We are so grateful to all the amazing people we have met via email recently and we look forward to getting to know you better in 2012. We know that in order to keep Cecily's Closet at a steady state - and to grow - that we will have to learn to delegate better. I'm admittedly not very good at that but it is NOT because I'm a control freak. (Yes, I standby that statement). It is merely because I feel guilty when I ask others to do stuff and sometimes I'm unsure how to pass the baton on these projects where we seem to be involved in every aspect, angle, step etc. But... our goal for 2012 is to learn how to accept help and to delegate so we can help more families and ensure that our own little family remains priority #1. With the upcoming birth of Cason we want to have 2012 planned for Cecily's Closet so we can meet our objectives and not kill ourselves in the process.
We'll be putting our efforts into the 3 main areas of the charity:
Room Makeovers - trying to do at least 10 in 2012
Belly Bands - growing this operation and we're committed to keeping these bands FREE for families in San Diego thanks to our growing army of local sewers
Equipment Recycling - growing this operation and using a parent to parent connection to facilitate the equipment exchange
We will keep our Adopt-A-Family Program for the holidays but we will limit the amount of gently used toys and clothes that we accept in the non-holiday months because we feel that aspect of the charity is harder to scale and we want to focus on our core mission.
We are so grateful to Beverly for her recent delivery of belly bands! We are loving the new denim! We are grateful to Suzy and all of her contacts that provided great stuff over the holidays! We are grateful to Beach Bungalow Designs for putting us on their home page and for the recent referrals! Thank you Jeremy for the beautiful ottoman! We are grateful to the strangers who have reached out and asked how they can help and to those that have shared our story with their book clubs, bible groups, friends and co-workers. Cecily's Closet is a community of volunteers, Moms and Dads, friends and family that believe together we can make a difference in the life of a child. Isn't it amazing what we can do if we work together?
Thank you for making our dreams come true for Cecily's Closet.
Onwards and upwards!
Just a quick note to say we are home and more importantly Cecily is happy. We are grateful for the love and care she received from her friends at Rady Children's. We are looking forward to a better week and lots and lots of cuddles at home.
Noah missed his Cecily and Cecily definitely missed her big brother. Thanks to my family for the food-runs at the hospital and for helping out at home.
Onwards and upwards!
Almost one year to the day we are visiting our friends at Rady Children's Hospital in sunny San Diego. On the bright side - it means our little angel was hospital free for any overnight stays for almost one year. On the not so bright side, our little one has had a rough few days and I have a new appreciation for how challenging it is to have a toddler confined to a crib that looks more like a cage than a place of rest...
After a rough start to 2012 - the Doctors decided that we'd tried everything we could do at home and it was time to admit Cecily so they could run some more tests and rule out anything major that could be causing her such distress. It is hard to see our happy little girl scream in pain and to have no idea what is causing it! Normally I blame her GERD... but this time I wasn't so sure because with the absence of her Topamax we've seen some new and exciting (and some not so exciting) developmental and behavioral stuff happening at home. Could it be that the Topamax had masked a lot of Cecily's pain and she is now experiencing her world in a much more instense and likely overwhelming way? Or is her tummy trouble to blame for the increased episodes of pain? Oh how I wish I had the answers and the magic meds to make her feel better. What made this even more confusing as a parent was these episodes would often be flanked by periods of normalcy or even great new developments! She is always keeping us on our toes!
I decided to write this blog tonight because I'm always positive and today I found myself looking everywhere for the silver lining and I couldn't find it. I was having "one of those days"... Cecily refused to sit in her crib, or to sit anywhere except in my arms - and I had to be standing! Yes, she is a princess but how do I refuse my little angel when she needs me most? Today I found myself more tired, more exhausted and more stressed than usual. There were a few times when I just had to put Cecily down in the crib and let her cry a little because my increasingly pregnant belly and back were about to break. (And for those of you that know me well you know I can't stand to do that!) I just needed a rest and I was feeling very guilty for that fact because I am 100% sure that Cecily's pain is 10x what I was feeling and it is not about ME! So why am I writing this? Because I always promised to write this blog with honesty and today is one of those days where the Mom i wanted to me was lost to the Mom I was...
She is now sleeping. I prayed for this all day. Please, please let her sleep. For the last few days we have been up all night - and I don't mean that as an exaggeration. Cecily has been waking upwards of 8x a night and we have been unable to calm her down. It kills me to see her in pain and it kills me even more when she won't calm to me. (Normally - even on her roughest days Mommy seems to help.) These last few days I felt useless.
And as I am about to put my head on the pillow my normal "the glass is half-full self" is finding the silver lining. We got to visit with 3 of our favorite nurses - Stacey, Katie and Amanda! We were treated to an outdoor visit from the SD Zoo where Cecily was inches away from amazing animals, and best of all... she is sleeping! She is not in pain. She is in good hands. And I will learn to forgive myself because I know I wasn't my best self today... but there is always tomorrow!
Onwards and upwards!
Today marks my Mom's last radiation treatment! HOORAY! She beat cancer and she got to ring the bell today at the hospital... we could hear it dinging loudly all the way in Cardiff!
Noah greeted Grammy with a big hug and a bottle of very good wine. He said, "Congratulations - cancer free... you are cancer free!" The words were slightly mumbled but it sounded like a song from his precious little mouth. He turned to me after saying it and asked me if that meant Grammy wasn't sick anymore.
I said, "nope - Grammy is all better!"
We are so proud of my Mom for the way she handled the last nine months. From the initial diagnosis, through her surgery, the chemo, the ER visits, hospital stays and daily radiation treatments she never gave up hope and just operated with a no non-sense approach to the process.
"You just have to get on with it..." I can hear her voice ringing in my ear. She just pushed through and skipped the pity party or "why me" moments. She is one tough cookie - just like her name-sake, baby Cecily.
We are so grateful to have this chapter closed and while the check-ups, oncology visits and tests will continue... we know she can beat this! We are so lucky that Mom had such a great medical team caring for her on her journey - led by nurse-in-training, my Dad!
Cancer is evil. It has taken too many lives - including Brien's Mom Judith - for whom baby Cecily is also named. Today we raise a glass (or two) to everyone who has fought the disease, to everyone who is still fighting and to those that are no longer with us. It is a good reminder to live each day to the fullest and not to worry about the silly things in life.
Thank you Cherice for the picture in this blog post. My Mom is, (and for the record has always been - a princess!) And even with a bald head she is the picture of strength, hope, love and true beauty. Hair is simply over-rated! She is an inspiration to me to never give up, to always believe and to just keep putting one foot in front of the other because at the end of the day there is nothing to do but "just get on with it!"
We love you Mom and we are so happy that this challenging time in your life is over. We are proud of you and today we celebrate you and your journey. You have once again showed us how to face down adversity and win.
Onwards and upwards!