Godspeed little man ....

"And can it be that in a world so full and busy the loss of one creature makes a void so wide and deep that nothing but the width and depth of eternity can fill it up."~Charles Dickens

At 9:20 this morning our sweetest buddy Christopher,earned his angel wings.And earn them did he ever.Christopher was the epitome of courage and fight and strength, despite all that this life handed him.From his very first breath 11 years ago, to his very last,Christopher showed us all that hero's are indeed of this world.

I love this boy and he,he loved my Zoey.Their bond was undeniable and went far beyond their shared extra chromosome.

Godspeed little man,until we meet again.

“Live in the sunshine, swim the sea, drink the wild air…” Ralph Waldo Emerson

By early morning ,the laundry was done,the house was spotless,okay,not exactly spotless but at the very least, clean and picked up, so the boys,Zoey and I, headed out to celebrate the first day of springbreak.What better way to do it then to head to Santa Barbara,a 45 minute drive north,and put that Santa Barbara Family Zoo membership to good use.That family membership,that we have renewed on and off for nearly 20 years,has been one of the best investments we have ever made.Perfect size zoo, with a breathtaking view of the ocean.With a membership you feel as though you can take as much or as little time as you like.No pressure because you know you'll be back in no time.We lunched on a grassy knoll,visited lots of cool animals and Zoey,well her favorite part was the people watching.I swear that child waved,smiled and lunged at,every person,big or little,that passed her by.Not impressed with the animals in the least bit.Did get a slight kick out of the elephant eating but other than that,wasn't doing it for her.And,to top it off,she absolutely HATED the train.Cried the entire ride.Signed "scared" almost non-stop and just was not a fan at all.I think the height of the train and the openness made her feel vulnerable.It's the only thing I can think of because she actually loves fast motion,so her reaction took me aback a little.She definitely lets us know her likes and dislikes .... loud and clear.







Zoey spied these three darling babies while we had our lunch.They were about 10 months old and crawled like no other.Well,Zoey went into her rolling mode and tried,to no avail,to catch them.Felt kind of sorry for my girl.She wanted to play with them so desperately and they were having no part of it.







After the zoo we went across the street to the beach.I didn't bring their swim suites because it actually isn't quite ocean swimming weather yet but that didn't stop the boys.Soaking wet,from head to toe by the time they were finished.And Jake,boy,that child LOVES the ocean.He did not want to leave and kept saying,"Just one more wave.Just one more."I think I will dig out their wetsuits and make a few beach trips part of our springbreak plans next week.As for Miss Zoey,she was in her element just being free and outside.Rolling in the sand makes for an interesting time but hey,I have to let her do her thing the only way she knows how.I just stand in awe and wonder at her tenacity where life is concerned.She really is undaunted and entirely unfazed by most circumstances and just does things in her own unique and beautiful Zoey way.







As we were heading back to the car,both boys,almost simultaneously proclaimed the day to having been, "the best day ever." ...."Ever", might possibly be a stretch but, if through their eyes,that is how they saw it ... then I'll take it.

The Diapers are Coming!The Diapers are Coming!

Couldn't resist the Paul Revere play on words.The boys and I just read one of our all time favorite books last night,John,Paul,George and Ben,and that just rolled off my tongue.If you love children's books,like I do and you love offish humor,like I do...check out this book by an extremely talented author.Super funny and educational to boot.

Back to the diapers.Yes,indeed folks,the day after tomorrow,Zoey's diapers will or SHOULD arrive on our doorstep.Excited and so much so,that I might just prop the princess upon the top of the stack and capture the Kodak moment.Kidding.At least about the photo but not about the excited part.My new best friend,Rick,from Shield Healthcare of California,called this morning and notified me that shipment is en route.Turned out to be not as big a battle as I was geared up for.Which was nice.All sarcasm aside,we feel extraordinarily blessed to be having such a service provided for Zoey ... and I am hanging onto the notion and the hope that one day,Zoey will prove Miss So and SO wrong and bid farewell to diapers all together.

Springbreak officially began this afternoon.Looking forward to the break in routine.Matt's mom and dad will be coming in from Chicago on Saturday for a week,followed by Mark's mom and his aunt,from NY, the following week.Throw in Easter and Jessica' birthday on Easter Sunday and that shapes up to be a definite break in routine.Not complaining in the least bit ... looking forward to all of it.Ample time for wonderful memory making.

*One of Zoey's favorite things to do is make her way over to the lower oven and "talk" to herself in the reflection.I just love watching her do this.And today,as I was battling my love/hate relationship with my stainless steel appliances,I captured a few photo's of her in "conversation" mode.At one point Matt came down and was putting his lunch together for work,or is that dinner when you work 1pm -1am,not sure which but anyway, as he was going about his business,Zoey paused long enough to wave to him and do his "name sign',which, because he is tall,6ft 7in,we pat our hands on our heads for his "name".I thought is was so cute and so smart ... two "words" together,"hi" and "Matt".Love this little girl... it is truly the simple things,like watching her engage in her reflection, that bring me just joy and remind me daily that ... it's all good.Life,in this moment,is all good.

*In further review of these photos,I am convinced I have the worlds worst camera ... or could it possibly be,the photographer and lack of knowledge of the afore mentioned and the photoshop that is readily installed in my computer?I say the former and am pledging to save my pennies for a new one.Which,my husband would say,would mean I should stop purchasing things like this.But seriously,after seeing it on this amazing blog ... I just had to have one!Don't you agree?Back me up people,I'm counting on you!!

For My Sweet Georgian Friend ....

As you approach this crossroad,may you know that you are never alone.Ever.

So I did what any good blogging mother would do

I FIRST grabbed the camera and THEN I cleaned up the child!So the story goes something like this:

I was upstairs putting clean sheets on the boys bed.Jake,Joe and Zoey were playing downstairs.Upon entering the boys bedroom,I am fairly certain EVERY Lego piece they own, was strewn about their floor.Strewn is actually a tame assessment.I called them up,they begrudgingly began to tackle the mess,only after I threatened that next time I would pick them up myself and donate them to a couple of other little boys who would be responsible and put away their things... yep, I dropped a "motherism" that many of our mother's used on us, that we swore we would never use on our kids.In my case however,my mother threatened to give US away but that is entirely a whole other post.Anyway,as the boys cleaned up and I finished the bed, we heard Zoey "talking".She sometimes comes to the bottom of the stairs when she knows someone is up there and kind of calls out...as if to say,"guys,where are you?"Super cute.So Joe yells down,"Don't worry Zoey we will be right there." Again,super cute.We head down,fully anticipating to see her sitting at the bottom of the stairs but .. she's not.Nor is she in the kitchen or living room.All of the sudden I hear this clanking and I head immediately to the laundry room,which mind you is pitch dark,flip on the light, only to find Zoey having a blast in the dog bowls.She was giggling.I was laughing.And the boys thought it was a scream.Check out the video and I would like to point out a few things.First ... my child is in need of a serious haircut.Second,would you listen to me,trying to take every opportunity to get Zoey to "say" or sign her words,all the while she is absolutely soaking wet.Lastly,look at my child, who puts virtually nothing to her lips, and she is licking and sucking the dog water off her fingers.Totally yuck but then again ... yeah Zoey.Next time could we try to put something a little more sanitary in your mouth?Please?(pause the blog music at the bottom of the blog if you care to listen.)

Oh What, Oh What, Should a Little Girl Wish For ?

"A dream is a wish your heart makes,
When you're feeling small,
Alone, In the night you whisper,
Thinking no one can hear you at all.
You wake with the morning sunlight,
To find fortune that is smiling on you,
Don't let your heart be filled with sorrow,
For all you know tomorrow,
The dream that you wish will come true."

Next Wednesday Miss Zoey will be meeting with her wish grantor's .... stay tuned.

Down Syndrome International has officially earmarked March 21st as World Down Syndrome Day . The date was chosen to signify the uniqueness of Down syndrome in the triplication of the 21st chromosome and is used synonymously with Down syndrome.Happy World Down syndrome to all of the incredible families and their absolutely perfect children, that I have met on this journey!And to my little love Zoey ... you are my guide,my compass and my hero.I am beyond blessed to be your mother.Thank you for choosing me.

I knew it was too good to be true ...

We have been so fortunate, over the last 3 years, in that we have seldom had to fight "the system".Be it hospitals,specialists,approval for certain diagnostic testing,therapists,equipment etc ... things have fallen into place so effortlessly.I have been so grateful for that ... can you imagine if we had to fight for those things,all the while fighting for Zoey's life?And trust me,many, many people do,under some incredibly stressful circumstances ... like, life and death circumstances.I have literally thanked God for each instance that something that was expected to require my "squeaky wheel gets the grease" method ...but lo and behold,it wasn't needed.Until now.And something tells me this might be the trend now that Zoey has aged out of Early Intervention.Remember those diapers that were going to magically appear on my door step after my case manager received my John Hancock at Zoey's last IEP meeting?Well,didn't happen AND if I had just accepted the letter or more specifically, accepted the reason for the denial,that still might be the case but at 5:30pm yesterday,boy did my squeaky wheel start squeaking.

"Coverage denied.Incontinence due to developmental delay." Say what? So my little fingers did their thing and I rang Mrs.So and So,expecting to find,on Friday at 5 o"clock,an answering machine.But I was pleasantly surprised to hear an actual live and in person voice.My pleasant surprise soon turned to not so pleasant when the bottom line was finally reached.I will spare you the go around but trust me it was a go around.A back tracking,side stepping conversation of contradictions.And I must say,I am not exactly proud of it but it does come in handy,I am a master arguer.I was polite.I was understanding.I was patient until she finally,with much prodding, spelled it out for me.Zoey was denied coverage for diapers because she has Down syndrome.Plain and simple.The reasoning.You'll love this.Because of her "mental retardation","cognitive delay",there is "no reasonable expectation" that she will ever grasp the concept of potty training and therefore diapers are only provided to those who either are expected to master toilet training OR because of physical limitations,such as Cerebral Palsy,when their body will fail to perform the task but their mind understands the concept.Are you following? Because I wasn't.My gosh ... I certainly know MORE children/adults with Down syndrome that ARE potty trained,rather than NOT.I asked her if she had in fact read in Zoey's chart that she had suffered a stroke and did indeed have a diagnosis of Cerebral Palsy due to that brain injury... seems she missed that part.She said she has 400 children in her case load and couldn't possibly read entire charts.Seriously?Entire charts?That diagnosis is like number 2 in the list but it seems number one,Down syndrome stops things in their tracks.After a lengthy conversation and my input of Zoey's 60 plus signs and her "potty sign",she is going to review the chart.I do feel sorry for the woman.My lovely home state of California is well,in the toilet itself.And after the fact,I thought about the countless other families, who genuinely need this service,receive the denial and don't have the energy or wherewithal to fight it?Like I said,just the beginning I fear, as Zoey gets older.Which brings me to my next rant ....

I love when Zoey and I are tooling around town,doing our errands,sitting at Starbuck's and people stop and engage me or actually Zoey, in conversation.I love telling Zoey's story.Sharing her journey of hope and perseverance.I love when people ask questions instead of staring,cuz people do that too...especially when I am g-tube feeding.I just absolutely love being out with Zoey period and absolutely love showing her off.Lately however, I have taken to saying something to people. Before Zoey blows kisses goodbye and we go on our way,I have no idea why I started this or what difference it will make but off my lips it comes,before I know it.I of course first thank them for the kind things they say,you know, like "how cute she is,what a blessing she is,how smart she is,how happy she is,what a gift they are",but I can't leave well enough alone lately and I follow with something along these lines ... "I hope 10,15,20 years from now when Zoey and I are out and she is throwing a fit and has plopped herself on the floor because she is trying to tell me something and I can't understand her,or she is blurting out inappropriately or hugging and tugging at a stranger's arm,I hope you will still stop and engage us or anyone else you might come in contact with that obviously has some type of developmental issues,cognitive or otherwise.I hope you will still think she is cute and that she is a gift and a blessing,even then."

I am under no illusion.Things are easy now.For all intents and purposes,Zoey is still a baby.She averages out at 7 months on her physical capabilities and anywhere between 9 and 18 months in other areas.She is just barely 4 pounds more then my granddaughter Charlotte, who is 8 months old.Zoey is a baby.I carry her.I rock her.I care for her every need,just like a baby.But God willing,she won't always be a baby.God willing,she will grow and thrive but chances are she will still need me to take care of a great deal of her needs,just as a baby or small child does.I hope some people will see her with the same eyes then,as they do today.

I suppose,it is obvious, that I still walk around with that proverbial chip propped precariously on my shoulder.Doesn't weigh me down like it use to but I still can't quite shake it.One day maybe.One day.

* Zoey signing "doll",while watching Baby Signing Time,a gift from her "boyfriend" Ray.

An Afghan of Her Own ...

Zoey received her very own afghan today .... courtesy of the of the most talented CJ,momma to Miss Em.Zoey's blanket is dark brown with pinks and complimenting browns and it is just beautiful!Many thanks to CJ for this selfless project she began.We are honored to have an Afghan of our own and we cannot wait to receive The T21 Traveling Afghan.This project is amazing and how lucky are we,to be part of it.

*Checking the texture out ... Zoey is very into textures.Playing peek-a-boo.Giving it a kiss when I asked her if she loved her new blanket.

"Each friend represents a world in us, a world possibly not born until they arrive." ~Anäis Nin

The blessings of blogging.This sacred space of mine here,was born during a time laden with fear and frustration.And honestly,a tad bit of loneliness as well.I seriously thought I was surely the only mother of a child with Down syndrome who came packaged with more then an extra chromosome.I soon found,I was actually far from alone.In fact,there was a whole other world,outside my little corner here in California,waiting for me to discover.I had no idea back then, that my need to get things down and out would morph into what this site is today.Neither did I know that Miss Zoey would give me SO much material to work with!Enough already Zoey Grace,do you hear me?But seriously, the single most amazing thing about this venture I began 2 years ago,was and still is, the families and the children I would come to know and eventually .... come to love.

I have a few longtime friends from those early days.We have weathered time and distance and we still are keeping up with each other as we continue to find our way with our complicated little loves.When Zoey's birthday arrived,packages arrived in our mailbox as well.The gifts were beautiful but the love behind those gifts, are what mean the most to me...these friendships are what I cherish beyond words.And their children,well I love them.I hurt when they are hurting.I ache to help their scared and frightened momma's when life hands them yet another blow.I yearn to sit across from each of them, and just talk.Face to face.Hoping after the sit down that,the strange to some bond we forged so long ago through cyberspace, would be stronger and remain intact ... which is a crap shoot where I am concerned, as I am slightly,um, shall we say,emotionally intense.I sure hope they would still love me.Hard to say.Could go either way.

So to Miss Ivey ...my courageous little fighter girl.Who,on that first day,I came on your blog,I heard Little Wonders, by Rob Thomas, playing on your site and that was weirdly the title of Zoey's new blog.As I listened,I watched through tears and in utter amazement, images of your decannulization day... it was beautiful and you my little friend, are simply beautiful.Thank you for Zoey's Seedling Braille birthday books.They are perfect.Much like you.She LOVES the braille ... her little hands just move over the pages,again and again.We will cherish your special gifts for always.

And Reagan Leigh .... what can I say?The bling shoes that your grandma just "whipped" up, are to die for.Wish we could tool around town together, with you in your black and Zoey in her pink and mommy and me well,we would find something to do.Maybe one day Zoey and I will head Houston way and make that happen.And to Tera,I hope you know what an incredible mom I think you are.Your days AND nights are trying, to say the least and really and truly,you never complain.Ever.You do what you need to do and you do it with such grace and such unwavering faith.I admire you in so many ways and are so grateful for your friendship.

And finally to Penny,my new friend.The hat is darling.Bright and cheerful and very fitting for our little Zoey.I thank you for your bravery and selflessness in sharing your story and I hope you don't mind,I want everyone to read your comment that you left.I am honored and privileged to be your window to what might have been.

"Birthday Blessing to Zoey!!!! and a huge Thanks to Mom for allowing me to tag along on your journey of grace and accomplishment! I have savored every post.... living a bit through your life I guess.
I adore your sweet girls smile and bright eyes. She gives me a glimpse of what might have been for us. Our daughter Mackenzie was blessed with Downs and plagued with severe heart dysplasia, many terms I still can't pronounce but in the end it kept her heart from pumping enough to adequately allow Mackenzie to grow to viability. At 21.6 weeks our hearts were broken and our baby took flight. Our life has not been the same, our path different. I was once told your path would have been different WITH Mackenzie,.... yes I suppose so but she would have blessed us so much. I love to see Zoey accomplish and grow, my little window to what might have been.

Blessings and prayers....."

The arrival of these friends and the countless others of you,that have passed our way,have enriched our world and we remain so grateful for your presence.


*Couldn't get a picture of Zoey in her snazzy Chuck Taylor shoes that did them justice, so I had to settle for a stand alone ... aren't they the greatest?One of the books Ivey sent was a Dr.Seuss book and the other was a birthday celebration one ... Zoey loves texture and the braille is really,really fascinating to her.And lastly, ... the hat came in that super cute hat box.Pop over and meet Penny ... her latest post tells a bit about how she got started making these hats and the direction she hopes to head... Zoey will proudly be wearing this thoughtful birthday gift.

"May God give you...
For every storm, a rainbow,
For every tear, a smile,
For every care, a promise,
And a blessing in each trial.
For every problem life sends,
A faithful friend to share,
For every sigh, a sweet song,
And an answer for each prayer."

My littlest leprechaun is in an extremely crabby mood today,which is highly unusual and I fear her momma is feeling much the same.Which isn't AS unusual.No particular reason.Just one of those mornings.The day started out extra early.I did however manage to pull off my tried and true St.Patrick's Day Traditions::Lunches packed with the theme of the day stuff."Pot's of Gold" or rather chocolate, greeted the kids.Green milk.Shamrock shaped cinnamon toast.And the all time favorite...various St.Paddy's Day Tattoos to adorn their little bodies.Joe of course wanted his on his face.Tried to convince me that the "Happy St.Patrick's Day" one would be perfect ... clear across his forehead... we finally agreed on the cheek for a clover and the other on his forearm.And much to his dismay, I was fresh out of my supply of green spray paint for his hair.The things these kids think I just regularly stock in my cupboards kills me!Anyway,he thought maybe I could "pop" over to Target and get some before school.Didn't happen.He handled it fine until we walked up to his line at school and found that one of his best little buddies had,you guessed it,vibrant green hair.Oh well.He got over it fast.

I think the little Miss and I will head to Starbuck's.Maybe it will be just the thing to turn around both of our moods.I sure hope so.Must run ... Barney is over and the little love is screaming,I mean beckoning, for something else ...

*Zoey trying to pick up her "coin's".Her's weren't chocolate but she managed to pick one up and put it in her mouth... the middle picture shows that ... maybe I should have opted for the chocolate ones for her.. I'd let her eat chocolate everyday,all day, if it meant she put SOMETHING,ANYTHING,edible in her mouth!

Jake Matthew Needham

"On the day you were born, the Earth turned, the moon pulled, the Sun flared, and, then, with a push, you slipped out of the dark quiet where suddenly you could hear ...

... a circle of people singing with voices familiar and clear.

"Welcome to the spinning world, "the people sang, as they washed your new, tiny hands. "Welcome to the green Earth, "the people sang, as they wrapped your wet, slippery body.

And as they held you close they whispered into your open, curving ear,
"We are so glad you've come."

From the book "On the Day You Were Born" ~ by Debra Frasier

Happy 9th birthday to our beautiful, beautiful boy.