I am sharing this wonderful film that a fellow Cecily's Closet supporter was interviewed for.

As a Mom of a child with a rare, undiagnosed disease, we have to do more to help our kiddos.

Please watch the trailer and learn more here: 
http://undiagnosedfilm.com/


There is a hidden epidemic - millions of people living with perplexing illnesses that elude definition and treatment.Undiagnosed: Medical Refugees is a medical documentary about what it is like to exist in a constant state of unknown, struggling with undiagnosed illnesses and rare diseases, and existing as medical refugees in a modern health care system. The film aspires to bring objectivity to this controversial and timely subject by interviewing doctors, medical administrators, and people, both children and adults, who have the misfortune of suffering without a diagnosis. Research and professional opinions combine with gripping stories into an incredible narrative that showcases the strength of the human spirit and the need for change in our medical system.

Onwards and upwards!

I knew this day would come. Cecily is a dainty flower and Cason, well Cason is the opposite of dainty. In fact, we call him "Bruiser"...due to his size and in large part due to the number of bruises he seems to have on his precious, sweet, angel-baby face.  I was walking in Cardiff last month and a man stopped me on the street to tell me the oddest thing.

Man: "Hello.  How old is your son?

Me:  "He will be two soon - he's 22 months"

Man: "I had to stop you because that is perhaps the biggest baby I have ever seen. His head is massive..."

Me: "Oh, yes, it runs in the family.  You should see his Daddy... have a great day!" ... Ummm... ok!

The time has come where Cecily and Cason (pictured in their matching dog PJs sitting with Flash) are just about the same size.  Of course, Cecily still has about 1-2 inches in height... but Cason wins on weight, clothes size, shoe size, hat size... and pretty much everything else.  No, it is not a contest and hey - size does not matter! It just leads to a whole lot of questions from folks that I'm not really interested in answering when I'm just cruising the mall, park, or Target aisles.  If I dare correct the person, or Noah blurts out - she's almost 5 and he's not even 2 - the person has no idea what to say next.  I honestly don't care I just don't have time for the story so I smile and say - girls are dainty!

I love that the kids are such good buddies. I love that Noah is the big brother and that Cason and Cecily play so well (most of the time) together. I have to admit - I love dressing them alike! It is just fun to see two toddlers running around and chasing each other - full of life and fun and mischief.  OMG - mischief! 

Most people know that I talk about Cason as if he was the second coming.  I love all my children the same and in very different ways. As a Mom, I truly appreciate that each child is unique and different and beautiful and challenging and rewarding in their own special way.  While our monkeys look related - they could not be more different.  Noah is the shy, quiet, smart and wonderfully silly child.  Cecily is the social, sassy, stubborn and discerning child.  And Cason - well he's just the happy go lucky - life is full of fun child! Noah follows directions.  Cecily does her best to understand and follow. Cason ignores them completely and flashes his toothy grin and big blue eyes as he blatantly does the opposite of what you just requested.  While terribly cute... it is terribly naughty and the cuteness will fade quickly to this tired Mommy.

Life has hit a new era.  The frequent hospitalizations seem to have subsided. Fear of Cecily vomiting and having GI-related issues are almost gone.  The medical scares (seizures, low sugars, kidney reflux, and more... have just about disappeared!)  We are grateful. We are stunned and happy and relieved.  And as one door closes another one opens and we are entering the area of wild behaviors and crazy tantrums.  The good news is we have fought through very challenging times before and we always come out the other side.  Tantrums are hard for any child.  They are especially hard for a child with emerging communication skills.  It is often impossible to understand how smiles have turned to tears and peaceful joy has turned to anger - in what seems like a blink of an eye. 

As the medical support in our house diminishes we are grateful for friends and family who realize that this new phase is actually just as hard (if not harder) on the family.  We are so grateful for the help and for the first time perhaps ever - I've not been to proud to take it.  

Noah actually was able to go away for the weekend with his new friend!  He went camping for the first time ever for 2 nights without any family.  He has left us before - but only with Auntie Neeta or Grammy and Grandpa. This was an entirely new experience and he thrived. We were grateful for him to have this opportunity as our life won't enable us to do trips just yet... 

And as I type this one baby just awoke with a fit of screams and tears.  The day is never done.  The cries are ever-present.  But this too shall pass.  Twins - one laughing, one crying.  Both growing and both thriving. 

Onwards and upwards!

Happy Birthday to the most generous, supportive Mom in the world! My Mom turns 70 today and we are looking forward to spoiling her silly!  We just can't believe this live wire is actually the big 70! How can someone so full of life, zest, fun and sass be hitting this milestone so quickly? My Mom is always there for me and for everyone in our family.  So here is my list... the 70 ways my Mom rocks!

1.  She is generous with her heart, her talent, her time and her wallet. 
2.  She is fun and fun to be around!
3.  She is a very good friend to everyone - even the barmaids at the pub!
4.  She is loyal. She will protect her children and her grandchildren at all costs. 
5.  She is supportive - even when she thinks you are taking on too much... 
6.  She is hard-working...and just like my Dad she never sits down!
7.  She is smart.  She can assemble or make anything - from curtains to chairs, dresses to sofas, bows to ballgowns the list is long and her skills are endless. 
8.  She is the life of the party. See #2. 
9.  She is a softie. (ie. She is not as strict as my Dad). She was always there to advocate for a later curfew, a slumber party or sweets and treats.
10.  She is passionate about her children and grandchildren. 
11.  She has a green thumb. A very green thumb.
12.  She loves to read. 
13.  She is honest. 
14.  She is a good dancer.  She's got the moves... See #8. 
15.  She can't hold a tune. She likes to sing to the grandchildren and it sounds like a wounded animal. She does not care.  She just keeps doing it...  I love this about her. 
17.  She loves shoes and purses and all things sparkly. A genetic trait she has passed down to little Cecily.
18.  She has been the Team Mom for tennis, basketball, swimming, running and more.  She has ran snack bars and bake sales and served as yard duty and more. 
19.  She had led Brownie Troops and Girl Scout Troops and managed more cookie sales than she likely cares to admit. 
20.  She worries about everyone and prays for their well being. 
21.  She does not like to drive but this did not stop her from driving to every one of our games, events, recitals, meets, competitions, dances etc. etc. 
22.  She is grateful for the gifts she has in her life. Her glass is always half-full.
23.  She is strong.  She is very, very strong.  
24.  She is beat breast cancer. She didn't let it stop her or slow her down.
25.  She believes in good old-fashioned hard-work.  Her work ethic is unquestioned. 
26.  She talks to strangers...especially if they have babies. She is a baby magnet.
27.  She makes my Dad very happy.
28.  She makes other Moms pales in comparison.
29.  She is a slave to laundry and STILL helps me with mine despite me telling her to stop.  She is a natural born helper.
30.  She never gives up on people. 
31.  She is a very big nag. This helps her with #30. She never gives up...
32.  She likes her wine. It's 5 o'clock somewhere...
33.  She shares everything except Rum Nougat from See's Candies and Digestive biscuits.  Don't ask. They are just that good! (kidding!)
34.  She gave up smoking for us.  
35.  She knows how to have a good time.
36.  She still likes to play with dolls... She may like this more than baby Cecily. 
37.  She is very proud of her children. And her grandchildren.
38.  She still has an English accent. She is proud to be a subject of the Queen.
39.  She is sensitive. 
40.  She is a good wife. Just ask my Dad.
41.  She is patient. 
42.  She is good with a deck of cards.
43.  She is good with money.
44.  She makes times for charitable works - lots and lots of time.
45.  She likes arts and crafts.
46.  She believes in a good bargain. She adores the 99 cent store.
47.  She is a beloved Grammy. The children adore her. 
48.  She has a carefree spirit.
49.  She just learned how to text and email. Beware.
50.  She has made many sacrifices throughout her life for her family.
51.  She knows that she is always right. No matter what. Just ask my Dad.
52.  She is optimistic in the face of adversity. 
53.  She makes the best roast lamp and yorkshire puddings.
54.  She makes yummy jam tarts, apple pies and sausage rolls. 
55.  She loves looking at antiques. 
56.  She does not like to wear comfortable shoes. 
57.  She believes a lady should always look her best.
58.  She enjoys a good back massage. 
59.  She never did anything bad as a child. Just ask her. Wait... she only did 3 things... Just ask her what they were...
60.  She loves food. She enjoys a good meal with friends and family.   
61.  She is always cold. How does a British woman living in Southern CA always feel cold?
62.  She appreciates well placed sarcasm at her own expense. 
63.  She never asks for anything. Even if you beg her to tell you what she wants. She says the same thing every year... "When you're older you can buy me something..." Note to self. I'm old. 
64.  She is silly. She is very, very silly. She can laugh at herself. 
65.  She can knit anything.  She can embroider anything. She can make Halloween costumes from scratch and clothes for any occasion. 
66.  She likes to be needed. And she is very, very needed!
67.  She could be traveling the world but she's not. She's here helping us raise our children.
68.  She has a beautiful smile. She poses for pictures better than anyone I know. 
69.  She has played a lot of roles in her young life - but none better than the role of Mom. 
70.  She thinks her grandchildren are better than yours.  I'm just saying...
 
 
On your 70th birthday I want you to know that I love you more than you'll ever know.  I am so grateful to have a parental unit that has devoted themselves to life, love and raising children and grandchildren.  We would be lost without you. The sacrifices you have made so we can have everything and more are astounding. I only hope that when I'm 70 that my kids have the same admiration for me as we do for you. You are a blessing to me and everyone who meets you. We are spoiled rotten.  We would never have survived these last few years without your endless support.  I wish everyone could have a Mom (and of course my equally fabulous Dad) - like you.

Happy Birthday Mommy! (and yes, I still call her that)

Onwards & Upwards!





 











 

Peek a boo... this is Noah retrieving the 10th ball Cason threw over the fence - for fun! I love watching the boys play together and it makes me so happy inside. The kids have the best time together and it makes me want another baby...

And so... we have an announcement! 

We are pleased to announce that as of today, we have a new member to the Ackerly bunch - Flash!

It was a decision we have been debating for almost two years. We knew that Noah wanted a dog.  The incessant begging for a dog... ever since his 2 bulldogs went on a very long vacation.  (This was of course parent code for we gave them away because it was no longer fair to the dogs to be part of our family - we were just too busy and Cecily was connected to a feeding tube 24 hours a day).  We never wanted him to blame her for this so they have been traveling the globe and visitng all of their dog relatives... and this story has managed to hold up so far!

Then there is Cecily.  While she can't quite beg for a dog it is obvious to anyone who meets her that her brothers - and dogs - light her up like a Christmas tree.  She is calm and peaceful when dogs are around - and these are words that anyone would use to describe our sassy, spunky, silly little angel.

And then there is Cason. There is not a dog in the world that he won't run up to and try and ride like a horse.  The bigger the better. The little guy thinks he is the Hulk and he is not afraid of anything or anyone.  This can get him into a lot of trouble but he is a lover all things dog.

And so it came to be that this little guy joined our very busy family.

 

After only a few short days it seems like he has been with us forever. He is calm and actually listens - a shocking surprise.  We've had dogs before but clearly this little guy was well trained.  He loves the kids and lets Cecily climb on top of him. He lets Cason pat him relentlessly and he cuddles with Noah while he reads.  He is a lover bug and we are grateful for the new addition.  He will sit at Cecily's feet during an all out tantrum and he does not seem in the least bit phased by the noise.  He is without a doubt the best dog for us.  We love him to pieces!

This has been a challenging week on a few levels but it has also been a week full of blessings.  The older I get the more I realize that life is full of ups and downs but you can't plan for it. You just need to take it in stride... one day at a time. 

This week with the help of my friends, sister, and parents I was forced to take a step back. I'm always so focused on getting to the next goal that I forget to appreciate the progress that is happening.  I was reminded just how far Cecily has come and that progress is not easily won - it is hard fought!  And Cecily will get there with time... but that I can't measure her progress with the calories she consumed in a meal - or even over a period of time. I can't be ruled by her weight on the scale or the IEP goals.  I just need to let progress take its time and enjoy the gifts that are many in our lives.

I hate being told what to do... Yes, I know some of you who know me will really smile at that.  I know I can be bossy and stubborn and a little bit annoying at times.  But I am so grateful for everyone who puts up with that and still loves me and supports me and the lovely family we have. Flash is curled up at my feet as I type and I am feeling very, very lucky.

Onwards and upwards!