With three kids, a full-time job and Cecily's Closet I have realized that the one thing I want most for 2015 is time. Time for the kids. Time for Brien. Time to just breathe and not worry about the to-do list or who I'm letting down... Time to celebrate and enjoy life. And boy do we have a lot to celebrate!
I have not blogged about our personal life for sometime. I did this deliberately because I felt that as a Mom I had somehow infringed on my children's right to privacy. It's a constant struggle for me to decide what to put out into the universe and what to keep tight in our family circle. Recently I've been reaching out to several Moms of children with special needs to share Cecily's story. We receive a fair bit of traffic asking for updates on Cecily and how she is doing with her eating. I figured since we are thanking our lucky stars lately and with the Thanksgiving holiday just around the corner it may be appropriate to share some quick highlights from the last year. We know we'll be sitting around the table this year (likely eating pizza... more on that later) and thanking God for all the blessings that this very wild and challenging year brought forth.
Where to begin?
A year-ago we were celebrating Noah's 7th birthday and gearing up for a month long hospital stay for Cecily. Words can't describe the sense of dread we felt in our hearts and the worry... endless worry. The program was the toughest thing I have ever done as a Mom. And I'm pretty sure it was pretty rough for Cecily, too. It was hard for the boys and for Brien to be alone with the boys. We had an AMAZING team cheering us on and that visit kicked off a year-long battle to get Cecily to eat. While the program was successful (we excited with Cecily eating 900 calories a day...) it was just the beginning of our eating challenges. 2014 was a battle of wills ... and we had our fair share of tantrums over food... eating... not eating and more... BUT... it was that program that opened the door and enabled us to get where we are today. It was not easy. I am not going to sit here and pretend that last year was not one of the hardest on record (emotionally, behaviorally, physically)... but we exited in a pretty great place. Thanks to a small army of supporters, Cecily is now asking for food and eating the majority of her calories orally. Yes, yes...we still have a g-tube. But we don't see this as failure. We see this as a pretty cool way to feed her when she (or us) are having one of those days and we need a get out of jail free card... It's pretty cool to know that we can feed our wild child in 2 minutes if needed... vs. about 20-30 minutes per session - with about 6 sessions min. a day! So we'll take it. Score one in the victory column for oral eating, requesting food and eating no longer being a war (sometimes a battle) but a massive improvement over the last 5 years!
And it's not just eating. Cecily can now say the alphabet. Yep - that's right. Our little monkey is talking more and more each day. She can answer questions... and it still blows my mind. In just the last month she started to answer when people asked her what her name was... and she can tell you her favorite color, food, animal and more. Sometimes I have to pinch myself... when I hear her demand something (in a typically not polite fashion)... I smile. I can HEAR her voice and better yet - I understand what she wants. Sometimes, when she yells, "No, Mommy" or "move Mommy" or "come on Mommy".... I think WOW. Really? You are one bossy little princess... but then I smile because I would have it no other way. (For the record - we have three bossy children). I am pleased that the public seem to think they are well mannered...
So to wrap up the Cecily update she is now eating, walking, jumping, running, trotting on her horse, twirling in ballet, tapping in tap class and giggling with her siblings. Can one say this is a dream come true? Why yes it is! But it is not easy. The days are full of roller-coasters and each day has very high highs... and sadly some lows. Our days are full of screaming matches and tantrums and behavioral issues that need fixing... but this challenges seem fixable and we are up for the challenge. We are pacing ourselves and for every thing we seem to fix...we find something new to redirect our celebration towards. We have survived much worse so we are working on our patience and reminding ourselves to smile and breathe. (and have wine... for those really bad days!)
The boys are just thriving. They provide endless entertainment. Noah is turning into a big boy. He has slimmed down, grown a foot, and looks like a little Brien. He loves to skate and surf and play soccer. He is always on the go and I love that his energy is high and his compassion for others still continues to impress. We're working on some attitude adjustments :) (both his and ours... hahaha) but all in all he is one good kid! Cecily and Cason are very lucky to have him and they follow him around as if he is a celebrity. Perhaps my favorite thing to do is watch the three children play.
Cason is two going on five. He is the size of a four-year old boy and he thinks he is Noah. He tries to skate, he tries to ride Noah's bike... and no matter how many times we tell him he can't fly he continues to test the laws of gravity. He is always covered in bruises and I'm just glad that his pre-school and our friends know that we are good humans because I'm pretty sure his legs and his forehead tell a very different story. I've never seen a kid take some many falls and rarely cry. I won't recount them... but we've been to the ER a few times... and he is always just ready to bounce and play and go big - even trying the same stunts that just landed him an egg on the head. That said, the child is pure joy. I have never seen him have a bad day. He just rolls with the punches and gives out smiles and hugs for his family. He cheers for Noah and is always the first person to tell him "Good game..." or "Go Noah..." It's so cute to see! And Noah tolerates this very naughty angel getting into ALL of his stuff... ALL the time. There is the occasional scream for help... but for the most part the brothers well play despite the big age gap.
Brien and I are trucking along. Working too hard... but grateful to have each other to help shine the light forward. If one of us gets lost the other one is there to help guide the way. We give each other a hard time. We play hard. We compete harder... but we love it! We are both so overjoyed with the children and we realize this is really all that matters. It makes the stress from our careers seem to fade away. A gift that seems to come with getting older!
And we'd be remiss if we didn't say how grateful we are to the Cecily's Closet team. The organization had a banner year completing 18 rooms to close the year at 63 rooms to date. WOW. If someone had told use we'd have done this many rooms in just under 5 years we wouldn't have believed it. The team of volunteers (250 and counting!!!) is truly amazing. Our Board of Directors and our team or artists/muralists are so giving, loyal and amazing. We are so honored to work with these talented individuals and so excited about what we've been able to do for children in our community.
We love that we're small but we give big! Thanks to the San Diego community we are able to change the lives of so many children and families in our won backyard. It's a priceless gift and we just are so grateful that we can do this in our spare time. Thank to the amazing TEAM Cecily's Closet for ALL of their efforts in 2015! I'm always afraid to list names in fear of forgetting folks but I'll do my best and beg forgiveness for those I may have missed.
Thank you to PaintGreen, Jon Ray, Emily Dolton, Julie Burkhart, Christina Hartman, Beverly Schlitt, Suzy Hall, Julie Heinrich, Gina Esoldi, Anita Carson, Kate Patterson, Jim Duvall, Robert Fetter, Dr. Christine Wood, Hanna's Murals, Sweet Delisa, Grace Ann Piano, Inside Emily Dolton's Head, Andy McRory Photography, Mark and the team at Mattress Company Direct, Tricia and the team at Beach Bungalow Designs, Dunne Edwards Paint, Rancho Santa Fe Foundation and Women's Club, The Mission Bay Women's Club, The UPS Store, Cox Communications and each and every one of the 250+ volunteers that donated their time and talent to Cecily's Closet in 2014! We are so very grateful!
This was a really long update. We're just excited for 2015 and feeling very lucky for the excitement 2014 brought! Onwards and upwards!