There are some days when I hold my breath and clench my teeth in hopes the screaming will stop. My heart hurts for Cecily and my patience is gone and I feel like the world's worst Mommy. I don't like this feeling at all - not one little bit - and I find myself fearing the morning and everything that may come with it. How did we get here? How did our sweet little angel get so upset, frustrated and self-destructive? The stress of watching her inflict pain is almost more than I can handle.
I look back at everything Cecily has overcome and I know that this too shall pass. She is a fighter. She is our angel. She is in pain and she is reaching out and we just need to fight even harder to reach her. We can't give up or get stressed or walk away. We need to dive in full force and show her that we are here and we believe in her. We think that her limited communication skills (improving all the time) are starting to frustrate her and that our choices for her (we try our very best) are clearly not the choices she would make if she could articulate her needs. We try to do our best for Cecily everyday but there are days when I wonder if we're doing the right things... are we pushing too hard? or are we not pushing enough? Are we expecting too much? Or are we not expecting enough? I wish someone would knock on the door and give me all the secrets to Cecily. (I'll settle for just one or two!)
I love my little girl to pieces. She inspires me every day to work hard, do more, try harder, appreciate everything, give more, be more, and to never, ever give-up. But... and this is the but I am not proud of... there are days when I fall far short. There are days when I wish I was not nursing so I could have a big glass of wine, take a bath and ignore the screaming. There are days when I just feel frozen and more like a robot than a Mommy. I find myself going through the motions but the joy is missing. But I am lucky! On these rare days I remember how lucky I am to have a family that stands by me during these challenging times and pulls me through. We allow ourselves to be honest and to voice our pain and worry and concern. Together we will pull through. It takes a small army to ensure Cecily gets her needs met and reluctantly I am accepting the help because I know it is what we both need.
I am currently watching Cecily watch Curious George. For some reason the Jack Johnson movie is calming to her and I decided that tonight it was ok to watch the whole thing... I needed a break and I felt she needed it, too. She is so calm and happy. (Cason is sleeping and Noah and Daddy are skating...)She loves the monkey and she is happy to be sitting next to me, fully engaged in the movie (while standing! - we're still sneaking in therapy...) and she looks precious. She is giving me a big, goofy smile and she nods her head when I ask her if she is happy. Isn't this what we strive for? At the end of the day I just want my angel and her big and little brother to be happy.
I will learn to give myself a break and to accept that I am not always the Mom I wish I could be. I will be better. I will take big deep breaths and I will hold Cecily's hand and wrap it with socks and tape if I have to... to keep her safe and to prevent her from hurting herself. I love her. Will there be more tantrums tomorrow? Yes. And the day after? Most likely. Will I have one too? I think so... but it will be ok! We have family.
Onwards and upwards!
Cuddles... never enough!
Big boy... graduating pre-school next week!
Big girl...ready to shine... watch out world...
Looks who is getting so big!
The boys....saying goodbye was hard but we'll be making TX our next stop on the vacation train this summer...
I love this picture of Noah and Luke. All three boys are very close but Noah worships at the temple of his big cousin Luke - and you can see it in this picture.
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Thanks Aunt Michele and Uncle Dan for a wonderful visit and great family photos! We love you.
Onwards and upwards!
Is there anything better than this? Baby Cason has enamored the entire family - especially his big brother and sister. Seeing the kids play so nicely together is the best gift for a Mommy or a Daddy. There is something about seeing your children love on each other and protect each other that takes your breath away and makes you stand ten feet taller. This picture captures that moment for me and Brien. We could eat it...
And on this special day we give thanks for all the wonderful Dads in the world - and for the two best Dads - Grampy and Brien.
It is so great to have family close and as we get older we appreciate the gift of family more and more. It does not matter how much money or stuff you have - there is nothing better than the hugs of a little one as they run to you and embrace you with a hug so tight you never want to let them go. We had a lovely weekend (despite the sad goodbye to Auntie Neeta, Luke, Ian and Keith as they hit the road for TX). We spent the entire weekend enjoying the kids and admiring our little chubby bunny, Cason.
On this Father's Day we remember those Dads that are also no longer with us. As I watch Brien with his mini-me Noah - I think how hard it must be for him not to be able to share some of these precious moments with his Dad. As his Dad's life was cut short far too early I never had the pleasure of meeting him. Sadly, he didn't get to experience the joy of seeing what an amazing son he raised and to burst with pride as he sees what a devoted husband and father he is today. All I know for sure is Robert Nelson Ackerly must have been pretty special because Brien, like my own Dad, is a loving, caring, supportive, giving and patient hands-on Dad that ALWAYS puts the kids first. He works so hard for Scripps to support our family - even if that means putting in extra hours on the weekend or after the babies hit the pillow.
Noah adores his Dad and thinks he is the biggest, strongest, smartest man on earth. This adoration is precious and well-deserved. This weekend Noah surfed and skateboarded with Daddy, played at the park and lounged around the house together. They are a pair with the same walk, humor and wide eyed grin and even bigger melon heads :)
And of course Daddy has a soft spot for his little girl, Cecily. I know a lot of people tease me for always having her hair combed and her bows in place... but I am not alone in dressing our angel. Daddy often takes the lead in getting Cecily ready and I love to see him lovingly comb her hair and tell her how smart she is! (We try not to tell her how pretty she is but that happens, too... we can't help ourselves!) Cecily always signs Daddy when she hears his key in the door and she eagerly bounces to see him - as long as he is not coming to put her to bed! Then she screams...Cecily has a soft spot for the boys and she adores her Daddy.
And then there is Cason. Admittedly he does not get a lot of time with Daddy as he spends most of his awake time eating and eating and eating. Daddy loves his third bundle of love and I'm sure it won't be long before Cason is squeezing into a westsuit and chasing Noah and Daddy in the ocean, down a ramp or with the soccer ball. Brien loves his kids with his entire being and I'm sure his Dad is looking down from heaven with a great big Ackerly smile. He would be so proud if he could see everything he does for his family and for Scripps. He is a giver, a hard-worker and a gentle soul.
And on this Father's Day we give thanks for my amazing, fabulous, supportive and first-rate Dad! There are no words to describe how lucky my sister and I are to have a Mom and Dad that will do ANYTHING for us. (And I do mean anything...) I could pick up the phone right now and scream I need a break and they would hop in the car and race over to help. They often do this when they see I need a break but am too embarassed or guilty to ask for one. This is what parents do and we are grateful to have their help.
And as this is Father's Day I will just say that my Dad has a gift with all the grandchildren - especially Cecily. There are days that are harder than others and his patience is boundless. She can scream, tantrum, bite, pull, and kick like a bucking bronco and he will never tire of pacing with her lovingly until she calms to his arms. It is a gift and one that I'm extremly grateful for. For the past three years my Dad has become like a second nurse to our family and it is so nice to know he will be there for her, or any of the kiddos, when we call.
Family is a gift. I am grateful to have two amazing men in my life and three beautiful, strong, and loving children. Every day may not be easy but we make the most of every day together as a family! Loves times three... I can't imagine what loves times four would be like...something to consider! (Kidding!)
Onwards and upwards!
Hello Jacob! This adorable little guy stole the hearts and inspired the talents of so many local San Diegans! Jacob is a fun-loving, sweet four year old that
exudes love and inspires hope.
Take the time to read his story and thank the people in your life that make you a bigger and better person. Jacob inspires everyone he meets and we're inspired to do our next room!
The family was nominated for a room makeover by a team of women who were excited about the prospect of making a difference for Jacob and his family. In fact, when Jacob was approved for a makeover by our board of directors the very same people who nominated Jacob offered to donate their time and talents to help complete the room makeover! This makeover is exactly what Cecily's Closet is all about - the community working together to make a difference for children with special needs, one family at a time!
If it were not for the following people, Jacob's room would never have happened! Cecily's Closet is excited to welcome these amazing volunteers and local businesses to our team! Thank you J. Hill Interior Designs
for your creative and colorful style! You took charge of this busy project and led a group of big-hearted volunteers into action. You tranformed Jacob's room into a playful and safe space - complete with robots, a racecar bed and more!
Thank you to returning, contributing artist, Hayley
, for making Jacob's walls roar to life with modern, inspired art! This fun space is now super-charged, with not one but three custom pieces of colorful, creative and modern art! We are so grateful that the second time Mom (and her adorable baby) were able to take the time to give this room an extra pop of color and fun!
Thank you to Andrea Gallagher Photography
for spearheading this
project and capturing the light and energy of the day with your amazing
photography. The room shines brightly in your pictures and we are so excited to finally have a photographer on our team!
Thank you to Streamline Development
for building a more stable
and durable stair railing and for assembling a child-proof gate. This
wonderful contribution provides Jacob's family peace of mind and ensures that
Jacob, his sister and future baby on the way are safe and sound in their home! Thank you Paul and Waltar for your handiwork!
And thank you Alexis and family for donating the racecare bed! We're so excited that we were finally able to use it in a room! And of course, no Cecily's Closet room makeover would be complete without the help of our oldest and dearest partner, PaintGreen
. PaintGreen has stood by us from the very beginning and we are proud to have such a supportive and wonderful painting team to provide the backdrop for these beautiful room makeovers!
Onwards and upwards!
Today we celebrated the one year anniversary of the PoVa Therapeutic Riding Program with a special day at the ranch. All of the students took a turn in the ring while the announcer spoke about the benefits each child has received while riding. Cecily's entourage was in full effect... (she is one loved little girl) and we cheered as she rode around the ring like a little jockey on the back of her beautiful BlueBelle - the horse she first learned to ride on at PoVa.
As Cecily sat with her back straight, head high, with focused determination the announcer shared Cecily's journey at PoVa. While Cecily loved the horses from day one - it took her close to two months to actually enjoy riding. We never gave up hope because we strongly believed that the women who ran PoVa, and the time with the horses, was good for Cecily. The staff and caring volunteers led by Ingrid and Kathy are some of the nicest women you could ever hope to meet. We were content with just having Cecily exposed to a new environment and we were grateful that BlueBelle had ear plugs to protect her from Cecily's very strong lungs... (yes, the horsie wore ear plugs while she rode I am not kidding!)
Today as Cecily rode around the ring I found myself wiping tears of joy from my face. I was so grateful for my extra big shades to hide this Mommy moment. She LOVES to ride and she LOVES the horses and the instructors and volunteers. She makes horsie sounds as we drive down Creek Road into the ranch and she bounces and kicks her feet with joy in anticipation. On the horse she rarely smiles but it is because she is all business...working hard to listen to her instructors and to soak up the beautiful trails, birds, and trees. It is a joy to see her ride every week! To think in one year she went from not being able to sit up on the horse to being able to ride like a big girl is unbelievable! We credit PoVa with so much... the list is endless! Riding has given Cecily an activity that she actually enjoys doing AND it has a lot of benefits to improve her growth and development, too. In addition to the glorious gift of finding something Cecily love and looks forward to - PoVa has helped Cecily's muscles grow stronger, has provided her with better trunk control, balance, independence, and confidence. Go Cecily Go!
Today was such a wonderful day and I'm so glad that the entire family took the
time to share this moment and celebrate PoVa's special day and Cecily's success
Tonight her Blue Ribbon hangs in her bedroom and she gave it a pat, pat pat before she went to bed . She is so proud and so is her Mommy! We are seeing her progress every day. She is starting to string two and three word signs together more consistently and she is so happy when she gets her needs met because we are able to recognize what she is asking for! This week she signed, "Please Share Noah"... (love!) and gleefully raised both hands when I asked her to raise her hand if she had fun at school! She also signed
"I'm smart!" She loves her friends and loves to point out the birds, trees and leaves to Mommy on her special walks. Cecily is our amazing angel and we know she can do anything she sets her mind to!
Thank you to PoVa, my supportive family, and all of her amazing therapists, nurses and Doctors who work so hard to ensure Cecily meets her full potential.
Onwards and upwards!
Ten years ago I married my best friend and soul mate. I feel lucky every day that I found a man that stands by my side, loves me for me and takes such amazing care of our little family. It seems like a lifetime ago when we met on the campus of UCSD... We were young and shy and very much in love. It only took my prince a few years to work up the courage to ask me out... and four more to propose... (and friends say I'm impatient!)... but it was worth the wait because we are so happy together.
On our wedding day I felt like a princess who had found her prince and to risk sounding cliche our wedding was a dream come true. We have lived our own version of a modern day fairytale with adventures on the east and west coast, and now our happiest adventure: the land of parenthood. Our relationship has withstood so many tests and challenges and yet with every turn and twist we seem to get stronger and more bonded together. Raising a family together has been the biggest gift of all. I love seeing the "Brien" in Noah and Cason and watching him get Cecily all dolled up. He is a loving father and patient man who keeps us balanced when the ship is rocking and talks me down when I'm leaning towards the edge of the cliff. We can communicate with the glance of an eye and we can compete (yes compete) like nobody's business... Who says a little competition is a bad thing???
Ten years later... here we are again getting fancy (a rare event) for a Scripps Benefit. Date nights are rare these days but the love, hugs, giggles and fun are still in abundance and for that we are grateful.
We enjoy the simple things like watching a movie together, sleep (whenever we can get any) and just playing with the kids. For Brien the glass is always half-full and living with a positive, optimistic outlook has made our often crazy, stressful, overwhelming yet wonderful life even better because we have hope and we never know what tomorrow will bring!
Here's looking forward to another decade together full of adventure!
Onwards and upwards!