These are two, tough cookies! Grammy Cecily and baby Cecily - pictured here together at swimming lessons. Despite a rough few days for both Cecilys... they manage to keep smiles on their faces. My Mom faced her 5th round of chemo this week and Cecily just endured a long Cardiology appointment and associated set of x-rays and EKGs. These two gals don't always have an easy road but they don't complain - they just go with it!
My Mom can often be overheard saying, "Just get on with it..." and I think if baby Cecily could speak she would echo the voice of her beloved Grammy. They both face down some tough obstacles but they always seem to find the rosy side of things. It is not easy to do... but there is really no better way to live! Who wants ot sit around waiting for the other shoe to drop? Life is short and today my Mom reminded me that you've got to make the most of every day - they are all gifts. She refuses to have any limits placed on her or her grandaugther. I would rather be guilty of optimism than of not believing in my child. Grammy feels the same way, too.
Today's visit left us a little stressed and confused... but also feeling very grateful. I can't step one foot into Rady Children's Hospital without feeling so grateful for what I have. Despite leaving with a new piece of equipment for Cecily - a heart monitor - I was ABLE to leave with Cecily. She is not staying in the hospital. She is not in immediate pain. She is still a happy-go-lucky little lady that just happens to have a few designer black bags to carry her necessary "stuff." In the scheme of things this is not a big deal. We will all muscle through. As I type this she is happily resting in her crib without a single sign of distress. Victory!
And Grammy is out enjoying herself with my supportive sister and her family. She may not feel well but she is not going to miss a chance to see her grandkids and enjoy the company of her children.
Tough cookies indeed! Onwards and upwards!
We had a lovely weekend away with Grandpa Bob in the mountains. Noah got to do everything a little boy likes to do... run around, get dirty, go fishing, drive a boat, play on a tractor and oh the water slides... He LOVES his Grandpa Bob and started crying when he woke up and realized we had left and Grandpa Bob was no longer in the car. We will definitely have to return soon for the relaxtion of Big Bear. We are grateful for the time with Grandpa Bob and for the time away as a family. We needed it!
Unfortunately, little Cecily was not as lucky. The winding car rides and new sleeping quarters caused her some anxiety and it took its toll. She is having a rough week upon our return and she picked up a lovely little bug. But she is a trooper and a fighter and after a few hard days she appears to be turning the corner. Our fingers are crossed for better days ahead.
I am exhausted. There, I said it. So for all those people that are telling me to slow down I am officially taking that advice... as soon we we finish this weekend's room makeover. Despite having too much on my plate Cecily's Closet fills our life with so much joy and so much encouragement. We see volunteers, people we have never even met before, slaving away for the betterment of children with special needs. We receive donations on furniture from strangers who support our mission and it fills our hearts with so much joy. We are meeting new people and seeing how wonderful people can be. It is very inspiring - especially when contrasted with corporate America. (and I owe my career to corporate America so I am not bagging - just merely saying that sometimes it does not bring out the best in everyone!)
I can't believe that we are working on our 17th and 18th room makeovers. Cecily's Closet seemed like a dream not that long ago and now it is really a full-fledged operation. We are making mistakes and learning as we go but we are learning! We are passionate. We are excited. And yes, we are a little exhausted. I think the hardest thing is accepting help and asking for it. I have never been good at either of those things but we know that in order to keep this little operation moving forward that we will have to say yes to help more often.
My parents continue to amaze and inspire me. They are not spring chickens but they have more energy than most 20 year olds... and they definitely have a zest and a passion for life, love and giving. My Dad donated his day to Cecily's Closet - installing a chandelier and figuring out answers to tricky, sticky issues with our room makeover. He is always there. And my Mom, who is in the midst of chemo, is likely at this very moment hemming curtains for the same room. She sews, she creates, she dedicates herself to me and our family. Cecily's Closet would not exist without the dedication of my Mom and Dad. They are a force - my guiding force, my strength and my support. If only we could clone them for everyone else. We are so grateful to Mom and Dad, aka Grammy and Grampy, aka Chief Seamstress, aka Chief Engineer, aka contractor, engineer, friend, and my giving parental unit. Most families who work with us know that my Mom and Dad are the backbone of our operation.
AND we are just so grateful to have the support of our community. We adore our community partners. We love our artists and painting friends. This week as we collaborate with a new corporate partner, UPS, we are filled with hope for the future of Cecily's Closet. We have had a wild ride. We are grateful. And we see even better things ahead... Onwards and upwards!
This is the look of a determined little girl. She is presently staring at an adorable little boy and trying very hard to get his attention. She giggled. She wiggled. She waved. He is precious but clueless. He opted for his toy water gun. You can't win them all. She was ready to give him a BIG hug and she did blow him a few kisses. Can you say flirt?
Cecily has not had an easy week so we must celebrate the victories that she did have. This week she had the BEST horseback riding lesson with her pony BlueBelle. It was glorious! While there were still a few tears - she was up and riding and having fun with Miss Kathy and Ingrid and her friends. We know she loves her horsies and it is magical to see her pet and feed them. If you have heard about horse therapy and wondered what the fuss was about.... I encourage you to check it out!
Cecily is a girl on the go! In addition to her horse lessons, she had two swimming lessons that were equally victorious. She just learned to submerge and did about 7-8 or submersions today in the water. She can do it! She was so proud and so pleased with herself. She works so hard and to see her smiling with the knowledge that she DID it - is priceless. She always looks up to see who is watching her - eagerly awaiting a smile, a clap or a cheer!
I just wish that these moments could last forever. Unfortunately, Cecily's feeding challenges continue. She is not tolerating her bolus feeds and she has vomited a few times this week. The questions outweigh the answers but we are not giving up. We have seen glimpses of what a tear-free day can be and we will get there. If anyone has suggestions for Cecily we are all ears. We are considering taking her to CHOC or UCLA for more opinions. We just know life should not have to be this hard for her. We won't accept that "an unknown genetic syndrome" is causing her pain.
I picked up Noah from school today and he informed me that his friend's baby was already walking. I knew what was coming... "How come Cecily is still not walking Mom?" Cameron's baby is walking. I told Noah that she was working very hard and that if we keep working with her - she will walk, too. I said I know she can do it! We just need to be patient and she will do it when she is ready. Fast forward to dinner. "How come Cecily can't eat?" This is a more frequent question these days. He understands that she has GERD but tonight he wanted to know why she had so many teeth...
"Mom, with that many teeth she should be eating..."
I smiled.
And then as if on demand, Cecily lifted the apple to her lips and put it in her mouth. Noah cheered! That's my angel. "Mom, she is doing it!" "She put it in her mouth and she is moving it around!" He was so proud. He told Cecily, " That's a good girl Cecily. You're a good baby."
I could have cried but that would have confused Noah.
Cecily continued to put carrots in her mouth and move them around. She didn't chew but she explored and that is a step in the right direction.
Noah was thrilled. "She can do it Mom." Now it was Noah's turn to reassure me. I love that kid. I love both my kids. It was a perfect end to a rough day.
Onwards and upwards!
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