This week was family haircut week! Pictured below - both cuties after their cuts. I had to share because Noah - who rarely lets us even brush his hair - now has a little boy cut that looks just like Daddy.  The lovely stylist from Kids Kuts in Encinitas added some gel and gave Noah a cool do! When we got home and were preparing for our scooter ride Noah didn't want to wear his helmet.  I reminded him of our rule - "no helmet, no ride" and he exclaimed, "Mom, it will mess up my wave!"

I had to laugh out loud which only made him very mad. He is so funny! He quickly decided that his ride with Mommy was better than looking cool but wanted me to recreate "the wave" for Daddy later.  Today when he came home from school I inquired if his teachers liked his new haircut. He said yes but she didn't get to see "the wave!"

Cecily on the other hand was just preening like a little peacock! She hates to have her hair messed with but she was pretty content for most of the process - and for that I am very grateful! We missed the pre-Easter cuts but we got the salon to ourselves! That is priceless :)

This week I am learning to let go of more than just hair... I think we've officially over-commtited in so many directions so we're pulling the plug on a few things and cutting back on others to ensure that the main focus remains our FAMILY!  Noah will survive if he does not attend every single party he is invited to.  I believe we hit a record with 3 invites for the same day.  I am going to let us off the hook on that one - with an offer for a play date and gift exchange at a later time.  Cecily's appointments are non-negotiable - but we can perhaps be a little more flexible with her schedule and know that we're doing our best.  It is so easy to beat yourself up if you don't get in 3 therapy sessions a day, and all the oral feeding, and ALL the "other stuff" to help her reach her milestones. Somtimes I feel like I'm forgetting to be Mom because I'm on a mission to do everything on the therapy list. I am going to work on letting go.   It is "OK" if the therapy is weaved into the day's events and not a planned, activity. 

And then there is my work.  I'm learning to say "no" more and more with my day-job  which is very hard for me. I like to please people but I have got to start reducing the load so life is manageble.  I hope they understand and that it works out for the best. They have been very flexible with me and I have been lucky to be employed and supported for so long through quite a bumpy time.

And then of course there is Cecily's Closet. We are so grateful to all the volunteers that have been stepping up to help us run this endeavor!  We are always thrilled when someone emails us and asks how they can help.  We used to say thank you and not dole out work.  Now we say thank you and provide a whopping list to choose from! THANK YOU volunteers! You are heart and soul of our efforst and at a time when we're trying to slow down we appreciate you all speeding up!

We've got 3 rooms between now and June and then we'll be taking a summer vacation from our Sweet Dream Room Makeovers so we can spend the summer grant writing and working on plans to sustain the charity for the long-haul.  By the first week of June we'll have transformed spaces for eleven children with special needs in San Diego in 2011!  We are thrilled with the progress but not the pace! We can't sustain that level so while it kills me to slow down and lose any momentum - I have to! We have to!  When we started Cecily's Closet we hoped to do 4 rooms in a year. We far exceeded that goal and now we need to be grateful for that and not worry about taking a breather.  And so this is not misinterpreted - we are NOT stopping!  We will just focus on more of our Art Makes a Difference Rooms which require MORE from our partners and less from us in terms of planning and coordination. We have our whole life to grow this charity and rest assured we will! It is our passion and our outlet and we can't imagine life without it. 

Wish us luck as we look forward and try and keep one foot on the brake.  It won't be easy but we'll try it! Onwards and upwards!

Closet is selling tickets for Macy's Community Shopping Day on May 14th. Tickets are $10 dollars and we get to keep EVERY dollar we make. Want tickets? Contact me! I can't sell them online so I have to actually hand you the stamped ticket. (If you are interested, ask me for a ticket. I am very unlikely to ask you to buy one directly...)  Or email us at [email protected].  We'll be at a few locations around town in the coming weeks and we'll be carrying the tickets with us everywhere we go. 

Community Shopping Day tickets entitle Macy’s guests to exclusive 10 to 20 % savings plus an additional $10 off of one purchase of $25 or more during the pre-sale period and on the day of the event at Macy’s participating stores only.

Community Shopping Day is a special shopping day event that offers the opportunity for nonprofit organizations like us to raise funds in their local communities. This year the event will be held May 14, 2011 at select stores in California, Hawaii, Nevada, Oregon and Washington.

We'll be at the Fashion Valley Macys on May 14th! Come stop by our booth and say hello.

And… All supporters that buy a ticket from participating organizations can enter a drawing for a chance to win a $500 Macy’s shopping spree (must be returned on event day at the specially designated turn-in table).

Learn more about the event and if it is a good shopping deal for you!  http://www.macysinc.com/communityshoppingday/whatitis/

Onwards and upwards!

From the mouths of babes - or in this case, my precious son. I'm picking him up from school today - ready for a play date at the park before tackling more Easter eggs and he we're reviewing the upcoming plans for the week. Tomorrow is his Easter party at school, Friday is Fun-Day and I think we'll be seeing dear Paris and her adorable son, Saturday is his friend's birthday party and then Sunday - Easter! We'll go to Church with Grammy, Grampy and his buddies Tommy and Abe and then off to Encinitas Park for a BIG Easter Egg Hunt... Then he interrupts my exuberance about all the fun he will be having with his friends...

"Mom, I have not seen God. I never seen him."

I look back and wonder what he is thinking. So I inquire.  Here I am focused on all the commerical aspects of the season and my four-year old is asking me about God.

"What do you think God looks like?" I ask.  Did you talk about God at school today?

"No. and I don't know what he looks like..." he says.

"Oh... so God is a boy."  I am trying to keep the dialouge open.

 "Of course he is a boy, like Daddy... oh, and he is big!"

I ask if he thinks God is funny like Daddy and he says no. He is quite emphatic about it. God is not funny. He is equally emphatic that he is not hot or cold and he is, "just right".  He is not loud and not crazy. 

I smile. We use the crazy word a lot in our house. Perhaps I should tone it down...

He then says God is peaceful and his attention is diverted to what kind of stuff the Easter bunny will be getting! He is wondering if he will get gummies AND chocolate and whether or not he will get a chicken that poops out eggs. The moment is not lost on me.  He is a good little egg. I love that kiddo.  We go to the park, go home and break out the Easter eggs for the second night.  Cecily is trying to climb up and pull onto the table. The eggs are resting in a bowl. I can see the accident about to happen but I don't stop it.

Noah leans over and tells Cecily not to worry.  He warns me that she is pulling up and also pulling on her tubes.  He then turns his direction to his sister who is grabbing at the plate full of sparkles.  "You are just a baby Cecily. You can do Easter eggs when you get big like me." 

He asks me if he can give Cecily something.  I say of course!  He offers her a spoon and continues on with his decorating!  They are both happy.  I am thrilled. I love watching him watch out for his little sister. It would be so easy for him to resent the time she requires, the people who come in and out of our house just for her, the constant doctor appointments, the time I have spent away from him at the hospital.  But no... he is there for her and he is always caring for her.  As we approach Easter I am just so happy to have to adorable eggs in my house.  Some days are harder than others but these moments make everything seem egg-cellent...

Onwards and upwards!


 

I am just reposting this note from The Arc and United Cerebral Palsy in California!  Onwards and upwards!

Preschool and Specil Ed Parents!Take Action!
Help eliminate multiple evaluations
 
Dear Friends,
Parents of school-age and preschool children with developmental disabilities are all too familiar with what might be called the evaluation shuffle – multiple, duplicate evaluations by schools, children’s services, regional centers, and health and mental health agencies.
Now we have a chance to consolidate all the evaluations into one.
The Arc and United Cerebral Palsy of California are sponsoring a bill to develop a single evaluation instrument or process that all the agencies can use. The key will be that the single assessment will take place at one time and one place each year.
Can you take about 60 seconds to send one email to support Senate Bill 472 by Senator Lou Correa?
We don’t usually ask you to send one of these point-and-click advocacy emails, because they’re worthless at best unless we can generate hundreds to the right person at the right time. I think we can do it this time.
The hearing will be next Tuesday, April 26, so there’s no time to waste. Please send your email today. Just click on "Take Action" on the upper right corner of this Action Alert, fill in the blanks, and off your message goes to Joy Traylor, the Senate Human Services Committee staff assistant, who will be sure your message is counted.
And then , please forward this Action Alert to any family members or anyone else who you can ask to take this easy but possibly very useful step.
And thank you for your advocacy.

Sincerely,
Greg
Greg deGiere
Public Policy Director
The Arc and United Cerebral Palsy in California
1225 Eighth Street, Suite 350
Sacramento, CA 95814
916-552-6619, ext. 16
916-223-7319 (mobile)
916-441-3494 (fax)

We did it! Thank you Team Cessy for honoring our little girl and her fight against Epilepsy AND for helping to rasie money for the San Diego Epilepsy Foundation.  It was a great day spent with family and friends and this will become an annual race for our us every year! I can't think of a better way to spend a Sunday!

A big thank you to Cecily's Nurse Kim D., who organized our team and  finished the race in 2nd place! The rest of the team was just happy to have finished the race! (But Daddy did come in first place in the double stoller division...)

Thank you Kim! You motivated us to do this and we are very glad we did! We're already looking forward to next year's run! We love their motto, "Not another moment lost to seizures!"  Our only regret of the day is that we could not get Noah to sit still to capture any pictures of him with this friends. They looked so cute in their matching shirts! 
 
Onwards and upwards!

A typical weekday morning in the Ackerly house... sleepyheads and smiles... and always a  camera within reach (in hopes of not letting any of these moments escape my increasingly foggy memory.)  Pictured here: monkey, lady, rhino, eeyore,  and oh yea... Daddy, Noah and Cecily.  It was a cuddle morning before the race against the clock began to get ready for work, school and more...

Our little family has a lot going on right now, but at the beginning of the day and at the end of the day we always make time for each other. The middle of the day is admittedly crazy... We just feel very lucky that we can make time for the hugs and kisses and cuddles and family dinner - even if it is takeout. We believe that hugs and kisses and family is the best medicine for EVERYTHING!

And Noah.  Noah is often our best medicine. I think everyone needs a little Noah in thier life. His comments this week were enough to keep us laughing through some very difficult days.  Let's see... comments like telling the neighbors we were "in our spy spot"... when asked what we were doing infront of their house.  Asking curious questions about the difference between girls and boys - I'd say use your imagination but you would never come up with what he said... And then there is his new dance moves... not sure where they are coming from but they can turn our worst day into a fit of fun because he rocks out hard in his car seat... and he is so proud when we tell him what a good little dancer he is.  And perhaps my personal favorite of the week was a conversation I overheard when he was with Cecily by himself.  He was leaning over her while she lay out and floor and  and he was cooing to her, saying she was just the cutest baby in the whole world and not to worry - when you get older you can have candy, too."  Oh... and then we asked him to draw his favorite thing and it was a Happy Meal.  Gotta love that kid for making us smile regardless of the moment.  Thank you Noah.  (Now if you would only listen to me when we needed to get out of the door...)

We are lucky. We have family.  We have friends. And we have our faith! And we are ready for whatever comes our way.  Lots of exciting stuff going on with Cecily's Closet. We're working on 3 rooms right now, and a whole lot more!

Onwards and upwards!

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All Aboard! All Aboard! This train is headed for Matthew's new Choo Choo room courtesy of Climbing the Walls!  

Check out our latest room, hear Matthew's story and learn more about our new, "Art Makes a Difference" project that is a complement to our" Sweet Dreams" Room Makeover program.  We receive so many requests for room makeovers and sadly we just don't have the funding to process all of them. (This kills me...BUT we won't be stopped!) Learn how we're taking the overwhelming support from local San Diego artists and using it to help more families in our own backyard. It may not be a full room makeover but we're giving the kids the one thing they seem to respond to most - the art!  Onwards and upwards!

Look out San Diego, Cade and Duncan are cleared for takeoff!   These two young boys are flying high in their new big boy bedroom, complete with their own Blue Angels shirts,  flags, videos and more! 

Thank you to Major Collins and the amazing military families who worked as a unit to help us make this room come to life. We had Moms and Dads across the country calling each other and gathering items to  make this room special and personalized for Cade and Duncan.   Read their story and check out the amazing job Inside Emily Dolton's Head and PaintGreen did on this room!

Onwards and upwards!

There are some days when I look up into the sky and wonder if anything else would like to drop down into my lap. I guess you could say this is just one of those weeks.  We all have them. And how we deal wtih them is what makes us stronger.  So... because I know I am at my limit I am asking a favor. Hello sky. My lap is quite full so please don't drop anything else down. Thank you kindly.

This is not a pity party. This is purely a statement that sometimes there is just too much going on and one needs to retreat to collect one's thoughts and remember that life is good and that each day is a blesing. Being a Mom is a full-time job. It is my favorite role and I cherish every moment of being a Mom.  I wish I was a better Mom. I wish I had more patience. I wish that I could always remain in the moment versus two and three steps ahead, planning for the next thing and worrying about whether the last thing was good enough.  I wish that there were more hours in the day so I could do a better job of balancing the demands of being a working Mom and being a fun, hip, ready for anything Mom.  I want to be what my Mom was for me.  I want to be better. This week I am thinking about my Mom and I am reminded of everything she has done for me and everything that she still does not just for me, but for my beautiful children.  She is just an amazing Mom. And unlike me, she is not a stresser.

And perhaps this week with the rain coming down in every direction - work, home, family, and beyond... I feel a little out of balance.  I think this is the first time, in a long time, that my primary worry has not been baby Cecily.  And for this I smile! Little Cec is doing so great that when I run through my mental "worry list"... it is a little easier to let the corners of my mouth turn upward.  She is thriving. She is growing. She is gaining weight without a worry and she is engaging with her environment in new ways, EVERY day.  What a joy! What a gift! Noah is developing into a real boy. A big boy. Where is my baby? He has a personality that I adore adn admire. He is his Daddy and he has a heart that is so big and a soul that is so gentle... and a body that is too big for his 4 year old frame! I see his shoes at the front door and think... who lives here? My baby can't be that big.  Noah and Cecily are my sun, moon and stars.  And they are doing great.  I am grateful.

But tonight, with both kids in bed, husband sleeping too, I find myself sitting up and worrying. I would really like a magic wand right now.   Sky - if you are dropping things down I will take one. And I promise not to abuse it for silly things. I will not use it to clean my house or make the laundry disappear (Thank you Kim... you are a wand!) or to make the  bills evaporate (but that would be lovely).  I would just like to wave it around and encircle all of my loved ones in a giant, protective bubble that was impervious to anything bad.  I need a bubble right now and I'd like to live in it, too.  So Sky. If you are going to drop anything else on me - please make sure that everyone I love is inside my bubble before you do.  We need each other.

Onwards and upwards!

What is cuter than these two swimming suits? Cecily wearing them! Today Cecily experienced her second swimming lesson. Cecily loves the water so we were pretty sure that swimming would be a fun and social experience for our little ladybug and we were right! Today's lesson wasn't as easy as the first one - but she eventually  warmed up to the water and splashed around with me.  She likes to see all the other little ones in the water and she is especially fond of one little girl! I love the look on her face when she studies the children and decides whether or not she thinks it is fun...  She likes to kick her little feet and have her cheek pressed firmly against mine as we float and sing together in the warm and relaxing pool!

Cecily played, splashed, cried and babbled through the lesson and she didn't give up! We are very proud of our little fish. Like her Daddy and her big brother, Cecily has a love of the water!  This swimming lesson combines everything we want for Cecily into one, unique experience. She gets the music aspect, the socialization, the water therapy, Mommy and me time AND of course.... a lot of fun! We are looking forward to our next lesson.  Swimming today... surfing tomorrow :) Our biggest challenge will be choosing what swim suit to wear! (Yes, I had too much fun picking out the suits from Target today with Kim and Noah!)

We would like to say a BIG thank you to Cooley LLC for doing another  donation drive for Cecily's Closet. We picked up some amazing stuff today from their offices in La Jolla that will help families in need of clothes, toys and books for their children. We also got some beautiful bedding, lamps and furniture that will help us with our room makeover projects! We are so grateful to the support from Cooley and especially from Sherri! She is our super-star that devotes her time and energy into helping our cause! Thank you!

Onwards and upwards!