Is it sad to cry because your baby is getting bigger? On one hand I pray for Cecily to get bigger and stronger every night, and on the other hand I pray to freeze time as Noah races towards the next phase of his growth and development. He has less time for Mommy and more time for cars, scooters, and anything with wheels! He even prefers Daddy's truck to Mommy's van (even though it is a swagger wagon...) and I find I take this entirely too seriously! I am already uncool... how is that possible? (no comments please). And I have to admit, as he turned the big four and he kept remarking that he was now a "big kid" I found myself wondering where all the time had gone. It is such a cliche... but time is passing by so very fast and my baby boy is now looking more like a pre-schooler than an angel-faced, baby.
As I was wrapping his birthday presents and saw the "not for baby with a 0-3 sign" I teared up... Then when he opened his presents and I found myself having trouble building the batcave and the jokerbot (which are evidently for ages 4+) I decided that was it... the growing would have to stop because I couldn't possibly assemble a lego-set for a six-year old boy, never-mind anything older. I know it is silly to try and freeze him in this moment but it is such a great age. I love the conversations we share, the pretend games, the enthusiasm he has for life and the gentle way he cares for Cecily. I am in awe of him and I want to bottle it up to keep forever.
It was so nice to have a few days as a family. It is very rare that we are all home in the house together at the same time. With our hectic work schedules, Noah's activities, Cecily's appointments, the chores and endless to-do lists... we don't get to spend as much time together as we should. Over this holiday weekend we had a lovely Thanksgiving dinner on Wednesday night - only instead of Turkey we had BBQ! Then Mommy, Daddy and Noah piled into the mini-van for a day at Disneyland to celebrate Noah's birthday. We had a truly magical day from start to finish - and while we missed our little angel, we knew she was getting spoiled by Grammy and Grampy. Noah loved the attention from both of us and I don't think we could have planned a better day or a better trip. We finished off the weekend with time at home, lounging together, playing board games, catching up on sleep and just relaxing. We had a very fun birthday dinner at the Corvette Diner for Noah and it was just the perfect end to a wonderful Thanksgiving weekend.
We are so grateful. We are truly appreciative of the gifts in our lives. We know that life will move forward and that tomorrow will bring a new adventure. We are a lucky family of four! Onwards and upwards!
We were very lucky to receive a donated GaitLite walker and tradmill. If you are interested in this wonderful piece of equipment, please contact Rhonda Van Eklenberg at the United Cerebral Palsy organization. She can be reached at 858- 571-7803.
Please mention that you saw it here on Cecily's Closet's site so they can properly identify the asset. Thank you to Emmy's family for donating this to us. It will definitely make a differenc in the life of a child with special needs in San Diego. Onwards and upwards!
A very dear friend of mine sent this to me. She received it in an email from the Oprah magazine. The timing was uncanny for many reasons.
"What I know for sure is that the only way to endure the quake is to adjust your stance. You can't avoid the daily tremors. They come with being alive. These experiences are really gifts that force us to step to the right or left in serach of a new center of gravity. Don't fight them. Just find a different way to stand."
I'd stand on my head if I could make Cecily feel better! Over the last few weeks we've had a few tremors with our angel, Cecily. The vomiting returned in spurts with a mixture of good days, bad days and everything in between. The seizures returned with mild tremors that appeared to gain momentum. By the end of the week we were on seizure watch 2010 - analyzing Cecily's every move from her smiles to her happy kicks -- to subtle and not-so-subtle stiffening movements. And then we had more problems with Cecily's feeding tube. There are days when despite my best efforts I can't stop the tears from falling as I hold Cecily's convulsing body in my arms as she wretches in pain. Watching Cecily wince, scream or have a seizure, is heartbreaking for me. I want to grab her in my arms and squeeze her and make it all better. The realization that I can't is what keeps me up at night.
And so that quote from the email sits squarely in my head..."You can't avoid the daily tremors... Don't fight them. Just find a different way to stand."
I think the answer is not just finding a different way to stand but knowing when to lean on someone for support. If I step to the right - I see all the friends and family that are supporting us and helping us to raise both of our angels. If I step to the left, I see the amazing medical team that we've assembled that takes our feedback, notes and constant questions and works to provide the best care possible for our angel. Our center of gravity is rooted in friends, family, faith and love. We are definitely going to have more tremors, more bad days and more unknowns... but together we can face them and remind one another of all the wonderful gifts and blessings that we have in our life. Every day has something special, something good. Sometimes we just need to look a little harder to find it. Onwards and upwards!
Please have your friends and family hit the "like" button on Facebook for PaintGreen (link: http://www.facebook.com/#!/PaintGreen
) and you can help us makeover a room for a child with special needs! Or, if you are planning to paint your house, please hire PaintGreen!
PaintGreen will donate painting services and materials for one bedroom makeover performed by Cecily’s Closet for every full interior or exterior paint job performed from December 1st 2010- January 31st 2011, as well as for every 500 new Facebook likes and every 500 new Twitter followers. Please check out this promotion and forward to your friends and family. This can help us truly make a difference for deserving families in San Diego.
We're making progress! Onwards and upwards!
Kids helping kids! I love it! Thank you to Girl Scout Troop 3016 for helping Cecily's Closet with our Adopt a Family program! These nine-year old girls are all involved in this project and we couldn't be happier to have their help! We are just thrilled to be able to work with others in our community to help make the holidays brighter for children with special needs that may not have had a Christmas this year. Thank you! Your generosity and support inspires us to keep going. Onwards and upwards!
Thank you to Cooley, LLP
for making the holidays brighter for low income families this holiday season. Not only did Cooley reach out to Cecily's Closet... but they also chose to sponsor not one but six families as part of our Adopt a Family Program! We are thrilled to have their support and their kindness. In addition to providing developmentally appropriate toys for children with special needs, Cooley is fulfillng the wish list of every family member!
Who is Cooley, LLP?
Cooley represents hundreds of clients in a wide range of industries from offices in nine major commercial markets. They are counselors, strategists and advocates for the foremost private and public companies. They have a legacy of representing companies bringing to market breakthrough products and technologies and frequently argue cases that fall in new areas of law, brought about by technological developments. Their business and litigation practice reaches across a broad array of dynamic industry sectors, including technology, life sciences, clean tech, real estate, financial services, retail and energy. With 650 attorneys throughout the U.S., Cooley has the range and expertise to serve companies of all sizes to seize opportunities in today's global marketplace.
Thank you Cooley, LLP for making the dreams of these children with special needs and their supportive families come true! It is not too late to become a holiday elf! Check out our list of deserving families and help make their holiday wish lists come true! Onwards and upwards!
Saturday night... dinner with the family at The Fish Market. We survived dinner. I think our relaxing evening out was hijacked somewhere between the "no games at this restaurant... no fair!" and Cecily's newfound awareness that screams in public yield immediate hugs, walks and anything else she might desire. We are now home and Cecily is exhausted from her one hour temper tantrum and Noah is happily watching his nightly show. Brien and I are ready for bed at 7pm. Sometimes I wonder why we still try... but we are always optimistic and we always believe that "this time" it will be different. We laugh at ourselves after but I think it is this optimism and belief that things will get better that has helped us keep going forward over this past year and a half.
Why did we compete the Pepsi Refresh Grant? The same optimism led us to believe that we have nothing to lose! And even if we don't win (the odds are against us) the awareness for Cecily's Closet could yield very positive things and it has! We'll be announcing some positive news in the coming days that we are very proud of! And so... despite our 139th place ranking we encourage everyone to keep on voting! We appreciate it very much!
We received the wish lists for our Adopt A Family program
for the holidays. If you can help, please check it out! We have sponsors for five families so far... but we have five more that are waiting! Cecily's Closet is also providing new crib sets to four families that are not listed on the page. Thank you for your help and your donations. (gently used items are encouraged and supported for part of this program).
Cecily had a great week. We had 4 vomit-free days until today. It appears she has now picked up a small cold... and a fake cough. We love the fake cough because she does it for attention...but we are not so thrilled about the runny nose, irritability, and itchy eyes. We just hope this is a quick recovery cold that does not derail her recent progress. I miss the smile parade and the waving baby.
Noah continues to be our source of strength. Today I left Noah and Cecily alone in the playroom as I went to make a much needed pot of coffee. Cecily was disconnected from her pump but she still requires constant supervision. I was gone for perhaps 3 minutes... and when I returned Noah had dug out all the "baby" cars so they could play together. He knows she can't play with the Hotwheels because of the small parts, but the soft, plastic ones are perfectly fine for her. I wanted to eat him. He continues to let her pull his hair, claw at his face, and do whatever she wants to him. I always tell Cecily to be gentle but Noah always tells me that it is ok because it makes her happy. He still has tantrums, he whines when he does not get his way, and he has a sweet tooth that leads to lots of begging... but he is one heck of a big brother. We may have our ups and downs but when we look at our situation the glass will always be half full. In fact, it is often over-flowing!
And now Noah's show is over and it is time for our nightly pillow fight. Let the games begin! Onwards and upwards!
After meeting with a speech therapist we decided to start teaching Cecily sign language. We figure it can't hurt and the research shows it helps with comprehension which is required in order for speech to develop. I was optimistic yet slightly skeptical because we have worked so hard just to get Cecily to wave "hi" and "bye" and nod "yes" and shake her head for "no". We started with a baby book and Noah and I learned a few signs. (Noah learned 2x as fast as me...) Then our Hope infant educator dropped by a Signing Times DVD. As we have shielded Cecily from TV and videos I wasn't sure if it was a good idea but I figured once again that it couldn't hurt. We plopped her and Noah in front of a small screen and voila! magic! Noah was signing about 15 words at the end of the DVD and Cecily said and signed dog! I was so excited - not a little excited - but a full dance around the kitchen with kids swinging and lots of smiles and laughter. I decided not to tell Daddy because I thought it would be more fun if I could recreate the moment after dinner.
So... I set up the laptop and asked Daddy if he could just watch Cecily for a moment while I did a quick thing for work. I queued the DVD to a few signs before dog and then I pretended to be busy with something else. I waited... and then bang, bang, bang - she was hitting her leg and saying dog when the doggy came onto the screen! Daddy jumped up (as I expected) and asked me to come over to see it! We celebrated again, this time as a family. There was laughter and tears but simply put - pure joy! We are so excited and we will continue to be proud of our little angel. She is a miracle and watching Noah teach her the signs (and me) is a new form of family fun! Thank you to Mary for encouraging (and not pressuring us) and we look forward to more moments like this. Onwards and upwards!
ps. Please vote for us :) Oh yes... I know it gets old and annoying but alas I can't help myself. Even if we're ranked 140 I will do this every day and would love you to, too!
Why is voting in the Pepsi Refresh project so important? Because it can lead to days like today... Cecily's Closet was blessed with amazing donations from Beach Bungalow Designs
in Del Mar! After recently moving to a new location in Flower Hill, this beautiful boutique (that boasts everything from casual to luxurious children's bedding, upholstery, window treatments, and furniture) was making way for new inventory. The owner, Tritia, saw our pleas for votes and offered us the chance to pick up a car-load of beautiful items that range from a Surfs Up boys bed set, to ladybug crib bedding, to pink satin and ruffles that would make any little princess smile! Cecily's Closet hit the jackpot and we are thrilled! Every single item we received was over-the-top adorable. If you have not checked out this store, I encourage you to do so! It is a magical sea of eye candy for you and your kids! We are very grateful and we really appreciate the blessings we received today! Thank you Beach Bungalow Designs!
I can't believe it is Sunday night already. The weekend flew by once again and I am busy preparing for the week ahead. Both kids are sleeping (Dad too) and I can only hear the hum of the dishwasher and the washer/dryer. With Noah - the hurricane Ackerly - in bed I can finally start to pick-up the house after quite a busy and messy weekend. Cecily is sleeping, too. She had an up and down weekend so we're just hoping that tomorrow brings a better day. She is so tough and watching her struggle and shudder with pain is something that no parent should have to witness. It just makes us want to fight harder to ensure she has the happiest, best start possible. Noah continues to cheer Cecily on and he is first in line to stop her from crying. He offers her his hair to pull, or his hand to hold and the interaction between them is priceless. It is an inspiration to us on days when life appears less than inspirational.
Well that's the laundry buzzer. Time to get back to it! Thank you to the supporters of Cecily's Closet for voting! I know it seems like a long-shot... but anything worth having is worth fighting for. We got a rejection letter this week for a 10K grant so we'll just continue to beat the drum and look for opportunities here, there and everywhere! Onwards & upwards!
Cecily played peek-a-boo today! Sure, we've played before but in truth - only I was playing. Today Cecily lifted up her bib to cover her angel face and then pulled it down to reveal a gigantic smile! How could one small act make the entire crazy day seem like a perfect day? This delighted me for so many reasons! First, I love playing with Cecily and seeing her smile. Second, she was having fun and she laughed! Third, she was engaged in just a wonderful Mommy and baby way... and that engagement is pricless. And lastly, this is just another data point for us to share with her medical team to show that she is making strides with her cognitive development (object permanence is considered an important stage in infant development) I don't need a medical team to tell me how well she is doing... but I'm not going to say I don't love it when she crosses another milestone off her list! She is sleeping peacefully now and I'm looking forward to tomorrow so we can play again! Now if only I could teach her to stop pulling my hair... Onwards and upwards!