You realize how great things have been trucking along when they start to go south. We have been so lucky lately with Cecily's health that I think we started to take everything for granted - a little. This week we were reminded how far she has come and how much pain she endured during her first 20 months of life. Looking back I am not sure how we made it. Over the last two days our little pumpkin has had her share of tears - too many. She is hurting and we have been unable to provide her as much relief as we would like. We hug her and pace with her and sing and dance and play... but we can see her little face fighting to smile. It is on these days that I hug Noah tighter and let him have an extra show or a special treat. Cecily has been in my arms for most of the day. ( I do love the cuddles). But I hate to see her in any pain and when I see her biting herself, cutting her own skin and wincing with some small tremors my entire stomach churns into knots and I want to scream, "this is not fair!"
But I think I hate that much phrase almost as much as I hate people using the "R" word or referring to their children as not normal. Life isn't fair and some days are better than others. We hate to see Cecily, or any child, in pain but we am pretty darn sure that she is a blessed child. She has a family that smothers her with love. She is lucky and we are lucky to have her in our life.
So we will not complain. We have a few rules in the Ackerly house. We are not quitters, we don't whine and we do what we say we're going to do. They are simple rules but they are teaching our children respect, integrity and to never give up on anything. We will never give up on Cecily and so today we fight harder for find out why this is happening. We have another genetic test coming down the pike and perhaps they'll finally be able to diagnose Cecily with something that may be treatable. We've been down this road 5 times... so we know not to get too caught up in the waiting game. A test result will not tell us anything we don't know. We are lucky to have Cecily and she is a special gift! But maybe... just maybe it will help us care for her better.
Over the last two weeks Cecily has been poked, prodded, tested, and seen by her entourage of Doctors at Children's. On all accounts - the reports have been positive. We know there is no crystal ball for any of us - and no future is guaranteed. So hopefully Cecily will weather this storm without a hospital admission this weekend and her smiles and giggles will return. We know she is making lots of progress and for that we are grateful.
Onwards and upwards!
Our 14th room is complete and this family's story is inspiring. Can you imagine celebrating the birth of your new baby and being told he would not survive past 6 months of age? It takes strength, courage and love to raise a child with special needs. Please take the time to read Jacob's story
and see how his family functions as a TEAM.
A big thank you to PaintGreen and Inside Emily Dolton's Head for the extra effort provided on this amazing room transformation. You are our heart and soul and we couldn't do it without you.
Onwards and upwards!
Yesterday was Noah's day. We played every game we own in the house from Hungry Hippos to Trouble, Go Fish to Lightening McQueen, and built puzzle, after puzzle, after puzzle. He soaked in all the attention and then while sitting across from me, out of the blue, he aks, "Mommy, will Cecily always have her tube?"
If I wasn't sitting I would have fallen over. Noah used to think everyone had a tube. We were in no hurry to correct him because we like that he treats Cecily just like he treats everyone else. He always sees what she IS doing versus perhaps what she is not doing. I LOVE that! He is always an optimist and he always tells me that Cecily will do this and that when she gets bigger. She will. He knows it! (And while I pray for it there are days when I am not sure that I KNOW it). I believe in Cecily and I am amazed by Cecily but I try to live in the every day versus worrying about what may be. So when Noah asked me this question I just decided to say, "We don't know. But... we do know that Cecily is getting big and strong and she'll eat when she is ready." Then in typical Noah fashion he was on to his next topic... what was for lunch - and by lunch I mean his fourth meal of the day...
So this morning when we piled into the mini-van this morning for a very early appointment at Childrens I kept thinking about Noah's question. Would she have the tube? Was I doing enough to help her transition from the tube? Should I be pushing oral eating more? Is her reflux ever going to go away? The haunting questions of wondering if I was doing enough just played over and over in my head.
The rain was coming down and Cecily was crying just to see the all-to familiar Radys Hospital building. She has a new awareness that comes with age and the tears form before she even sees the white coats. I kept saying, "no ouchies today" but she just looked at me with those big blue eyes. The tears continued as she was weighed and measured and I wondered how the morning would continue.
I flashed back to how the day started... Up at 5am, broken coffee maker, subsequent coffee flooding along the kitchen floor, a lost lunchbox for Noah, and our lovely nurse Kim called out sick. Add Cecily's double poop resulting in a double change of clothes (all before 7:30am... and I was ready to pile everyone back into bed.) It was going to be one of those days.... but it wasn't!
Miss Nancy, our favorite GI Nurse, greeted us with her smiling and gentle face. Cecily beamed. We chatted about her amazing progress and Cecily doled out the smiles and looked quite proud. Despite the two hour wait between check-in and Doctor arrival the visit was great. Cecily's growth chart was something I had dreamed about... the dots were plotted with a very big upward curve, she is perfectly proportionate, and she weighed in at a beautiful 24 pounds! We have spent a lot of time in the GI clinic and I am not going to say it was all just peachy. It was definitely not. But today the sun shined down through the rain and we checked off our goal sheet and gave Cecily some new stretch goals which will hopefully reduce the amount of time she spends attached to her feeding pump. All good things ahead!
We may not have an answer to Noah's question. But we do know that Cecily is doing great. She is saying Noah now - with conviction! She is waving hi and bye and she can point to her nose and her head and her toes. She is standing for fifteen minutes (her personal record) and with assistance she can finger walk. These are all amazing accomplishments and she is working very hard. She is an inspiration. She will do whatever she sets her mind to - when she is ready! Onwards and upwards!
We did it! We sold 123 tickets and hopefully we will be in the top 10 charities to benefit from the overall ticket sales for Macy's Community Shopping Day. Thank you to everyone who sold tickets on our behalf, who bought tickets and who promoted this event on FaceBook for us. We hate fundraising but this was another non-threatening win-win way for everyone to get something for their dollar. THANK YOU! We will keep you posted on the results.
Come and see us at Fashion Valley! We will be there tonight from 6-8pm right by the cosmetics counter. If you are out and about please stop by and don't forget to drop your tickets in the stub box at Fashion Valley or the Macys Home Store to qualify for the BIG shopping spree! I need one of those... I was just looking in my closet and I am pretty sure that I have been sporting MOM jeans and other fashion police worthy concotions. I need a makeover! But alas we are too busy for that...
We are almost ready for next weekend's room for Jacob and his brother! We have a few surprises planned for this deserving family and we're pretty sure we'll hit it out of the park because our all-star, Emily Dolton, is back in action with this sports dream room. Bring on the football, basketball and baseball... let's play ball!
And then next week we're also speaking at the Teen Volunteers In Action luncheon. I can feel the butterflies growing every time I think of it. I love to talk (most of you know that) but something happens to be when I share Cecily's story and why we founded this charity. I am praying that I get through this little speech without too many fumbles. That said, we are honored to be speaking about our little charity and the fun we had working with this delightful teen organization. We will be doing 2 more rooms with TVIA in the fall and early 2012. It is great to see young kids and teens be so passionate about helping others.
And last but not least, we're thining about hosting a surf contest this summer. If you have any experience planning a contest, hosting one, or getting sponsors for this type of event, PLEASE reach out to us. We are toying with the idea for September. Cecily's lovely nurse's son, Kellan, has been the driving force behind this idea. It is inspiring to see a teenager with the conviction and passion to help other children like Cecily. He is a doll and he has motivated me to get to work. He is putting me to shame with his ability to approach local businesses for their support. Thank you Kellan.
Ok... the laundry is buzzing... And Cecily is beeping. (or should I say her pump is beeping!). Duty calls... onwards and upwards!
There is no job description that accurately represents the title of MOM. You can read every parenting book and magazine, attend seminars and classes, or better yet listen to your Mom, Grandma or friends who are Moms, but until you hold your baby and gaze into his or her eyes for the first time it is just impossible to comprehend the power and responsibility that comes with the position of MOM.
That said, I know a few things that can help you prepare for being a Mom. Patience. Love. And most importantly, having a great Mom in your life to help set the bar high and to help drive you to aim higher and support you when you slip.
I am so lucky to have a beautiful, funny, spunky, (very spunky), smart, quirky and above all else - devoted Mom! There has never been a time in my life where my Mom was not there for me. From morning moments, a gentle ruse she created to wake a not-so-great morning person, to holding countless positions like troop leader, team Mom, tax-driver, seamstress, friend and counselor. My Mom is never more than a phone call away. I am so grateful to have her in my life, not just for me, but for my children. Noah and Cecily adore her. They have a strong bond and I enjoy watching it grow and develop.
My Mom is an inspiration to me. She encourages me to be my best and to always dream big. She is positive in the face of adversity. She looks for the best in others. She finds the good in a bad situation and she remains positive while facing one of her toughest battles yet - her own personal fight with cancer. This past week she had surgery and she is preparing for chemo to start in a few weeks. While this news would be enough to keep many down - my Mom keeps going. I see in her a new strength, a new radiance and a new committment to live life to the fullest. She is tough and rolls with the punches and encourages everyone to "just get on with it..." which is basically her way of saying shut up and do it baby.
Everyone needs a Cecily in their life. We named baby Cecily after my Mom and we are sure she has my Mom's spirit and spunk.
On this Mother's Day we honor my Mom and all the Moms out there who are doing their best to take care of their kiddos. It's not easy being a Mom - but I can't imagine my life without the title MOM.
Onwards and upwards!
After meeting this family we were ready to move in and be adopted, too! They are just a delight and an inspiration to everyone. Check out Cameron and Kayla's
new beach retreat and learn how these amazing children and their supportive family are smiling in the face of adversity. Read their story here.
Onwards and upwards!
Hello sunshine! Could this face light up a room or what? What a gift to see her toothy grin EVERY day! She is giggling and cuddling and letting the world know she is here and ready to play.
On a week that provided us with more than a few challenges it is a joy to see Cecily smiling at us with delight. She is an inspiration to me and the rest of our family. Within the last week Cecily has taken a few steps while I held her hands above her head, has again uttered the beautiful "Noah!" and continues to crawl a few more paces every day. She works so hard to do the things that we all take for granted. Her determination is so strong. She digs in her feet, she sticks out her tongue and you can see her trying with every fiber of her adorable body. It makes me want to try harder and work harder because she is trying and working so hard EVERY day. From the moment she wakes up until she passes out with exhaustion, she gives 100%.
She even mastered her pancake float in swim class and put her face in the water to blow bubbles! She popped up with such a smile that I couldn't help but smother her in wet kisses and parade her around the pool like the princess she is! The best part, Noah continues to cheer her on from the sidelines! When she took her first steps holding my hands he screamed and threw his hands on his head like an adult! "WHOA! go Cessy!"
We can see the sun coming out and it is beaming brightly in the Ackerly house. We are making some lemonade and we're ready to share it. Onwards and upwards!