Double, double toil and trouble; fire burn and cauldron bubble. - - - Shakespeare "Macbeth"

I decided to head back into the archives once again and read my post from this day last year.The day Zoey began chemo.Feel free to click back here and read if you weren't with us at the beginning of the leukemia journey.Kind of long but not too bad.I think it is important for me to re-visit those days every once in awhile.Necessary pause so I never, ever take for granted the place we are in this moment.I do remember how exhausted I was.How I looked in the mirror and hardly recognized the person staring back at me.Huge circle under my eyes.Huge.I remember also,by months end, I had what we came to refer to as the "4th floor diet"look.You know,the one where nothing with any substantial nourishment has touched your lips in ages and you are functioning on coffee and coffee alone.Or in my case ... hot chocolate.I think I lost over five pounds that month.Not to worry.By the end of round 6,as we became veterans on the 4th,I had more then packed on that 6 ... and then some.

So I go from a trip down chemo memory lane to,today.I didn't have all my loves under one roof this year either but at least one was not in the hospital.Caitlin and Danny and Taylor were enjoying each other in San Diego.Do you see my little grandbaby?Is she not just so darling and I especially think it's cute that she HATED her costume!What struck me also,when Caitlin sent these to me, was that Zoey was at least 3 times Charlie's age before she could sit in a Bumbo ... Charlie is just short of 4 months old !!

We went to our good friends Bill and Geralyn's annual Halloween Party from about 2-6.A great time was had by all and we loaded the kids up with some pre-trick or treating sugar.I remember last year,distinctively,that Zoey was really off a bit that day.Nothing I could put my finger on.I just thought she was coming down with something.Yeah,right,"something"

We then headed home and began the Halloween festivities.Lit the pumpkins and lanterns and the rest of the crew,minus Zoey and much to her dismay,went out trick or treating.An hour and 15 later they were back and the boys were digging for yet another dose of sugar.Then showers,books,bed and all are sound asleep on this all Hallows' Eve.Far,Far cry from last year and tonight,as I placed Zoey in her crib I once again, for the hundredth time,at a minimum,told her how absolutely proud of her I am.She gave me a cute little Zoey grin,we signed "I love you" to each other and with that another Halloween comes to a close.

And Life Moves Forward .....

I always find it so very difficult to post again after we have lost one of our beautiful friends.It feels a bit disloyal in some weird way.Seems far too easy.None of this should become easy.We need to continue to be startled and shocked to attention each and everytime we lose a child to this beast.We can never,ever sit back and surrender and say,"These things sometimes happen.This is just part of life."I may know those two things but it doesn't mean I have come to any point in my life, that resembles a dwelling place of acceptance.But life does go on.That remains to be the ultimate contradiction in my mind. The undeniable heartbreaking truth that exists along side the indescibable beauty ... life does indeed go on.Our prayers continue to pour out freely to the Smith's, as our tears flow just as readily at the thought of their days beginning and ending without the presence of Kai alongside them.

A semi-quick post on pre-Halloween hoopla.And,you know,that is exactly what it is.Hoopla.It seems that Halloween is quickly beginning to rival the craziness of Christmas.Seriously.Stores are jammed.Costume prices exorbitant.Pumpkin Patches have become these full tilt extravaganzas that cost an arm and a leg to just walk through the gate and all the rest ... extra.I refuse.Now don't get me wrong.I LOVE Halloween.Really love it.But I SO yearn for my Upstate NY Cider Mill.We have nothing like that and I miss that.I am excited to have another "set" of little ones to carve with and dress up with and just watch their wide eyed wonder of it all.I just wish,that like so much else in this world,that Halloween hadn't become so commercialized.Oh well,can't fight change.Oh wait.Yes I can.It's a no go on "PumpkinDisneyland".

Jake and Joe had a Halloween Parade followed by parties,at school.Their school implemented a "no mask,no weapons" rule this year.Try telling that to 2 kids with a trunk full of "Batman,Iron Man,Superman,Spiderman,Optimus Prime,Bubble Bee and Various Star Wars characters',costumes.Doesn't go over big.They opted for an astronaut suite that Joe got at the Griffith Observatory and Jake ... Ozzy Osborne.. we had that costume ... he knows who he is and ... don't ask.We carved pumpkins tonight.Strange to do it without the big girls.Although Jess did get home at tail end.Pumpkin carving continues to be one of our very favorite,long standing,family traditions.Joe hung for most of the time but crashed and burned and will have to finish tomorrow.Zoey loved watching and her Jammies ... skeleton ... that glow in the dark!Very cool.As for the pictures with daddy.I caught her signing daddy by herself.She also is doing "shhh" because Joe was sleeping on the ottoman and she puts her hand on the side of her head for "sleep".She has picked up a number of signs over the last few weeks."Milk" being one.She fists her hand and rubs her thumb across the top.So cute.She does "water" by sticking her finger in her mouth.Similar to "shhh"She really is showing us new things all the time and I can tell, that her receptive language,what she understands us saying,has really gone through a spurt.I'll save some of the other new things she is doing for another post.Tomorrow marks a year ago that her first chemo treatment began.Instead of getting hung up on that or feeling like Halloween will forever be dampened,we are celebrating.A year ago she received the chance at life.How blessed are we?

Sweet Kai ...

"At approximately 8:18am this morning, Thursday, October 29th, our gracious Heavenly Father gathered Malachi James Smith into His eternal arms. Malachi is now standing face to face with our Lord and Savior, completely whole, completely healed, and completely PERFECT. There is no greater joy than this."

These words,spoken with such amazing strength and resolve,came from Kai's mother Rachel, this morning.Our hearts are broken and aching for the Smith family and all who love sweet Kai.I know,our family is blessed and better for having known Kai.We have garnered our very own strength and hope by watching Kai's family pass through life's darkest time,still holding fast to their faith and belief in plan and purpose.

“There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief...and unspeakable love.” ~Washington Irving

A Year Ago Today ....

"Things don't go wrong and break your heart so you can become bitter and give up. They happen to break you down and build you up so you can be all that you were intended to be."~Charles "Tremendous" Jones

If you click here you can read my post from a year ago today.I remember very little of that day.As much as we knew that leukemia could be part of Zoey's future,nothing prepared me,any of us, for her oncologists words that Monday, which were,"We have some problems with today's labs."I called Mark and all that happened afterwards, is a absolute blur.Which I think,is a blessing in some ways.Our memories are double edged swords however.They rob us eventually of the things we wish so desperately to remember forever and ever but often,during some of the most difficult moments in our lives,usually the darkest,those times too begin to fad.

I am in complete awe of the little child I see before me today.Miss Zoey has amazed me from day one of her birth and that has not ceased,for one second,to this day.I am in awe of my other children and how they have grown and evolved and endured all that has been asked of them and all that they have had to process and channel and deal with.I am in awe of Mark and how he just got done what needed to get done, to provide for his family,remaining positive and optimistic,all the while caring so tenderly,nearly each and every evening for his youngest little love.During this past year,our family has witnessed the most incredible outpouring of love and support from our fellow human beings.More kindness and compassion and unselfishness,then we could have ever,ever imagined.We have been surrounded by doctors and nurses who have loved and cared for Zoey,as if she were their own.I have,along the way,also met the most magical children and families that I would have never had the opportunity and the privilege of meeting had it not been for this journey.I have watched with immense joy and hope,the faces of children and families who are one step closer to cure.I have also watched with equal pain and sorrow, the faces of families whose children would not make it to cure.A year ago I would never,in my wildest dreams,have imagined having to watch parents and siblings and loved ones, say goodbye and journey forward in this life, without their precious children.That part of the journey I will never be able to reconcile.

A year ago, our family found strength in each other, as we united,with one goal and one goal only and that was to see this innocent child through the unimaginable.And here we are.365 days later.All of us together.A family of 8 taken to the edge once more and brought back because of the indomitable will and spirit of a tiny 2 year old.I have said this countless times before and it bares repeating.Zoey Grace and her presence and entry into our family is what we have been waiting for all of our lives.She has changed us and shaped us and empowered us to be the people we are today.We give thanks to God for leading us,sheltering us and covering us in His amazing grace so we can proclaim once more,how incredibly blessed and how humbly thankful we are.No one knows what tomorrow will bring or the day after that,or what awaits us around the next corner but what I do know, is that for today, in this moment,we rejoice.

Simply Amazing ...

I know,back so soon but this,this I have to share.We have a special little friend.Yes,we do have a lot of special little friends but this one,she is simply amazing.Her name is Madison and she stole my heart from the moment I heard her very precious,tiny voice.She was,I believe,roommate number 2,last year.Zoey had just completed about a week of her first round of chemo and one evening in came a new roommate.Sweet,tiny thing with dark hair down to her waist named Madison.Both her Grandmas were there,along with her mom and dad.Everyone of them had that shell shocked look on their faces that said it all and needed no words..Mark and I were getting ready to do our switch,I said a quick hello and goodbye and I was off.Well,the next morning Mark called me and said,"You are not going to believe this".He said Madison's mom Julie, was crossing the room to use the bathroom and spotted our family photograph and stopped.She pointed to Taylor's picture and said something along the lines of "I am Taylor's manager at "In N Out."Oh my gosh.Seriously.What are the chances?Julie said that she knew that Taylor's sister was sick.Didn't know the particulars and never dreamed they could possibly land in the same hospital,let alone the same ROOM,as we were.As for us not knowing Julie,In N Out has a huge managerial staff and we weren't in very often so we really would have never had the opportunity to have seen or meet her.And ... to top it off,the next day,in walks Madison's Aunt Steph who just so happens to be the manager of the Starbucks where we go ... way too much!Small world indeed and what a blessing it was to have found Madison and her family.I would however give back that blessing if it meant Madison did not have to fight cancer though.Madison was diagnosed with Stage 4 Neuroblastoma and has been put through the paces,big time, since last November.You could not imagine the treatments Madison has endured to get to this day and as of today,as per a recent scan,Madison has No Evidence of Disease.She has another 5 month Antibody protocol to still under go but these days,her family is rejoicing and embracing the future.

Madison is a huge Miley Cyrus/Hannah Montana fan.We are talking pj's,underwear,shirts,blankets and not one but two blonde wigs.Over the last year,many people who love Madison, have tried,to no avail,to see if she could meet Miley in person.Nothing has panned out.Well,last night Madison went to a Miley Cyrus concert,courtesy of her adoring Grandma.She went with her Mom and aunt and her mom's friend Tiffany.They sat in the 6th row and if they had left that night,with just have seen a Miley concert, that close,that would have been enough for Madison but instead,see for yourself,what happened.This was not planned or orchestrated.THIS was just the way Madison was meant to meet her idol.Even if your not a Miley/Hannah fan,you have to watch this.When Julie called me last night on their way home I was so beyond ecstatic for Madison.I wished that I had been there to see it.When Julie called today to tell me to check out youtube,well,I cried.And I cried.My little Madison.Living every little girls dream,right there,in front of thousands.Amazing.Simply amazing.Don't forget to pause my music because you HAVE got to hear Madison's sweet little voice.

"THE" WEEK ....

I have come to this computer no less then a dozen times over the last week and each time .... nothing.Lots to say but no way to clearly put the words and emotions in writing.The news of Kai has hit me hard.I feel so absolutely helpless with no adequate words or actions for his family.So,instead they remain the very first thing I pray for before I go to sleep and they are often the very first thing I think of in the morning.I usually head down bleary eyed and turn on the computer and check to see if there is a caringbridge update or facebook status.They were able to head to Disneyland on Thursday for their Make-a-Wish mini trip.They packed in a ton of memory making moments in a few days but in my book,still not enough.Rachel,his mom,posted that Kai was struggling this morning, so they headed back home.I hated to read that.Not unexpected,but hated reading it nonetheless.So now, all I or anyone else can do,is pray our hearts out for peace and strength for all of them in the days ahead.I feel like anything I have to say here is so inconsequential compared to the journey they are taking.So insignificant in the big picture.But tonight I decided it was time.

This Tuesday,the 27th, we hit the one year mark when our introduction and walk with the world of pediatric cancer began.Come to think of it,sometimes it was a walk,other times a run and sometimes a barely moving,going through the motions time.This week marks "the" week when our lives forever changed and difficult for some to understand, not all for the worse.But in some moments I wonder and question that myself.In these heavy sighing,heartbreaking Kai moments,I really wonder.When Zoey was diagnosed, I could never have imagined the tremendous joys and deep,bring me to my knees sorrows, I would simultaneously feel.But here we are and most importantly here Zoey is.We have,in the words of her oncologist this week,made it through one of the most pivotal times in the treatment of AML and that is the first year.This is a milestone.One to be celebrated and savored and shared.This past Monday,Miss Zoey had her port removed as well.Another amazing milestone.Her port was placed on the 30th of October of last year and you know,there are so many moments over the last year,so many pictures and events that have been,in many ways,erased from my memory,however,the day she had her port placed,I will never,not ever, forget.That day, when they ushered Mark and I back into the recovery room and I saw her with this metal foreign object sticking out under the skin of her precious chest,I wept and I,once more, apologized to my tiny daughter,over and over and over again, as I rocked her back and forth.I apologized for not being able to protect her.And everyday since that day,I have lifted Zoey from under her little arms and I have felt that reminder of not being able to protect her.So strange to not have it under her clavicle anymore but so very,very wonderful.Now,all that remains,is just another scar to add to her extensive collection of war wounds.Dr.Gaynon,her oncologist, is cautiously optimistic.I asked him to put in writing that everything was going to be alright and he said sure he'd do it but it wouldn't be worth the paper it was written on.I love this guy.A genius and has been with us since day one of Zoey's birth.I trust him and that makes all the difference in the world to us, as we travel the months and years ahead.We are back right before Christmas for another lab draw.This past weeks numbers were fairly decent.201,00 for platelets,which is up.14.7 on hemoglobin which is about the same and white count ... 2.97 and an ANC of 950 which is so-so and down from 1500.Which indicates that the sooner we stop Bactrim the sooner that they might rise.One more month to go on that.

Zoey did really well with her surgery.As usual.Unfortunately though, when ever she is put under,her little intestinal tract,that is so slow to begin with,just kinda stops.So poor girl has been oh so not happy with tummy issues.I think we finally got a handle on it today.Hopefully.We had a little Halloween party this afternoon.We had one planned last year,at Jake's request but leukemia kinda put a damper on that so we threw together a little one today.Bobbed for apples.Made caramel apples.Pizza and lots of junk.Kids had fun and Jake,my little entertainer, was thrilled.

Lots more to share but I think I probably have lost a few of you by now anyway.I'll wrap it up and try to not let as much time pass in between posts.Please keep sweet Kai and his family in your prayers.Peace for the road ahead.Grace for the times that they are weary and fearful and uncertain.Strength for when they question their resolve.And love which is stronger then this all.

*We went to the pumpkin patch a few weeks ago.Couldn't get the three of them to all look at the camera at once to save our lives.A few pictures from the gathering and check out Zoey's darling outfit.A gift from our dear friends in Texas.Thank you Tera and her very talented mom ... who has a business and makes all these little outfits.Fits perfect!!

Marathon of pictures .... of the marathon

This post probably won't begin as some might have expected. I could have begun by filling you in on the weekend and all we did and all we experienced and all we were touched and changed by but instead I have to share something far more important. Something I have not and probably never will, come to understand or make sense of. Something I have carried, heavily on my heart, on our hearts, this past week. Something that made our participation in this marathon all the more necessary.

Shortly after I published my post last week, we were absolutely devastated and blindsided by news that came about a simply darling little guy named Malachi,or Kai,for short. Kai, as you might have guessed and may remember from some of my other posts, is a fellow 4th floor warrior.However,we already knew of Kai and his family, long before Zoey was diagnosed. You see, Wes, Kai's dad, is the cross country coach and athletic trainer at the high school where the girls graduated from.Small and so closely connected our world actually often is,isn't it? Kai was diagnosed with Acute Lymphobalstic Leukemia,or ALL a full year before Zoey was diagnosed with AML. We followed Kai's progress from the beginning of his journey and when Zoey became a CHLA regular, we were blessed to spend time with not only him but his amazing mom and dad. Kai was not usually inpatient, as his leukemia was in maintenance, and unless he spiked a fever, we only saw him at clinic. Then, in December of last year, after 14 months in remission, Kai relapsed. The national marrow bank was searched and a very successful bone marrow drive was organized on Kai's behalf but a match was not found. Soon after the drive however, a compatible cord blood donor was finally found. Kai went into the BMT unit at the end of April and spent 100 plus days there before being released in August. Last weekend Kai was admitted with a fever and an infection in one of his central lines was found. Not an uncommon occurence with kids with ports and lines. While undergoing some blood work, immature blood cells, or blasts, were found. A subsequent bone marrow biopsy was performed and soon, Wes and Rachel's, worst fears became reality. Kai had relapsed for a second time. The Smith family was faced with some unimaginable decisions and in the end, they have decided, to take Kai home and allow him to be free of tubes and pokes and chemo and all the horrible other stuff that goes along with this awful, unfair disease. This week Kai will have an expedited Make-A-Wish granted, and he, his mom, dad and older brother Ethan, will go and play and make beautiful memories at Disneyland.

Kai is 3 years old. Three. I'll repeat that: KAI IS THREE. Over two years of his little life has been spent enduring more then any of us could ever possibly imagine. But he, like so many of these children we have met, have battled, with more grace and fight and forgiveness then any of us could ever imagine . I am void of words or as I said before, void of understanding .I am only able to extend my love and faithful prayers to Wes, Rachel, Ethan and most especially Kai. A sweet boy who should be making a lifetime of memories and living a lifetime of firsts but instead is taking a journey that none of us has the ability to change the course of.

Team in Training raised 14 million dollars for the Leukemia/Lymphoma Society this weekend at the Nike Women's Marathon. Believe it or not, it's still not enough. There still is no cure and there are still countless other children and their families journeying down the same unspeakable path as Kai and his family. Something has got to change. It just has to. Please keep Kai, his family and all who love them, in your prayers and send them peace and strength for the journey that lies ahead.













For some reason I totally reversed these pictures. Last popped up first. All are fairly self explanatory. Notice our personal cheer crowd in their Pablove t-shirts. If you haven't checked out the foundation that Pablo's family has established, please do and also keep up with the amazing cross country trek Jeff,Pablo's dad, is doing on his bike to raise awareness and funds for pediatric cancer research. Wanted to say, Jess and I had smiles on our faces at her mile 24 and my mile 12.5 but ... pictures really do lie!

"We must embrace pain and burn it as fuel for our journey."~Kenji Miyazawa

I am going on a mini sabbatical.Short hiatus.In other words,a blogging break.The first two descriptions sound more intriguing though, so I couldn't resist.Call it what you want.I'm doing it.Brief.A week or so maybe.Why?A few reasons.One not any more important then another.Just different.I will still be checking in on all our friends though.Commenting when I am able.October is a strange month for me.Mentally,October will mark a year since Zoey's diagnosis,so that in turn stirs up a wide range of emotions and instant replays in my mind.Physically, October has found me getting ready for the marathon.Or at least trying.This coming Sunday is the day.We leave Friday.Ready or not,at 7 am the 18th,it's go time.I am actually really,truly excited.I am not nearly as in shape as I had hoped.I started off so strong.Flew into August with an "I can do anything"attitude and then did a huge nose dive.I hit a wall.My body was sending me some serious messages and my mind was doing the same.So much so,I spent some time with a "mental health professional",aka, a psychiatrist.Diagnosed with Post Traumatic Stress Disorder.Not much of a shock there.That has been a long time coming.Really diagnosed myself ages ago.Not sure why I needed confirmation.The last 2 1/2 years has been,how should I say it ... well, hell fits the bill I suppose.Probably even a bit of an understatement.But I continued to get out of bed,clean the house, make dinner(sometimes),my children were all accounted for,my marriage was intact and I would say,all things considered,I was doing fairly well.Or so I thought.See,sprinkled in there was a whole lot of going through the motions,push down the emotions,ignore the wreckage of broken relationships and just kept moving.I decided I didn't want to "just keep moving".I wanted to truly live while moving.So thus,"the mental health professional." consult.And did I forget to mention,my genetics and pedigree just screams "mental health professional" should be on retainer.So I go and I find,you know,in the end,I'm not so bad after all.What would one figure should be a "normal" response to a child born with Down syndrome,major heart defect,rare blood disorder,stroke in-utero,catastrophic form of epilepsy and leukemia,all the while trying care and nurture 6 other human beings AND squeeze the care of myself in there someplace?I think a mini breakdown was in order.It was certainly mini and brief and in order and for me, in the end,I realized,all that I was feeling was appropriate for all that had been dealt out.I feel much better then I did a month ago.I opted out of medication and today I feel renewed and finally feel as if I am finding my way.

As for the Marathon ... I can't believe it's finally here.As I said,I had hoped to be better prepared physically but as I was running the other day,something struck me and struck me hard.And it was this:Those that I am running for,never had training or preparation for what was before them.These precious kids were plucked from playgrounds and soccer fields,high school hallways and mother's breasts.They were innocently and unwittingly and quite frankly, cruelly placed on the front lines of a battle.And anyone, who doubts for one minute, that it is anything other then a battlefield,has only to spent a short time watching these children fight for their lives and in some heartbreaking cases,lose that fight,to know why we as parents call it war.So my strength to complete this marathon comes solely from the courage,resiliency and determination of ALL the children I have witnessed do battle over this past year.This marathon is a piece of cake compared to what was asked of these beautiful children.Today, I have the honor and privilege of watching some make their way on the other side of treatment.My own daughter for one,is a daily reminder.One look at her and I see the face of a survivor.As I have run over the last few days I have also brought to the forefront of my minds eye,the faces of all the other children we have met and fallen in love with over the last almost 12 months.I remember roommates and friends and most importantly,I remember the angels who have been taken far too soon from this world.I see the faces of Angel Luke,Lauren,Collin,Freida,Madison,Angel Sunuda,Christopher,Alex,Emily,Christian,Ricca,Jayden,Angel Thomas,Kai,Angel Sol Merie,Klein,Angel Pablo, and Justine.Too many children.Too many.And so I run.I run with the hope and prayer that a cure is around the corner.Our little Team in Training team raised nearly $100,000 dollars.$100,00.That is almost enough for an entire research grant.A grant that quite possibly could hold that cure and that miracle that innumerable families are waiting on.For some it is too late but because we know all too well that more will come after our children,it is our call and our responsibility to do all we humanly can to ensure the future of others.

When I begin my race on Sunday I will be wearing three things.One is a hospital bracelet from one of Zoey's admissions.6 admissions.6 months.6 go arounds with the hope of cure that came with a skull and crossbones on the bottle.Poison with a touch of promise.Next is a ring that was sent to me a while back.I will thread it through my laces come Sunday.It came from a faraway friend who has being an amazing source of support and prayer over the last year.The ring says"The journey of a thousand miles begins with one step".The really cool thing about this ring is that it also has this little twist in it.Just like my necklace from Band of Angels.A twist that represents the unique beauty of our children that have come to us with a little something extra.Thank you Stephanie.I love you dearly.The last is a necklace that was sent to both Jess and I.A gift from an incredible mommy who was and still is in the midst of a fight of her own with her feisty one but took the time to think of us and and write THE most amazing words to inspire us and propel us forward on our run.Thank you Jeana.I am so blessed to call you friend.Although, I am so much older then you,you can call me mom if you want!Seriously though,I continue to be touched by the love,generosity and selflessness showered upon me and my family.We are humbled and we promise to do you all proud.So until next week,many blessings to you all.Hug those children just a bit tighter.Tiptoe back into their rooms after they have fallen asleep and gaze upon the beauty of the gift of their lives and when you do, could you please say a prayer for all those parents who's hearts are aching at this very moment, for just one more chance to do the same.

Thanksgiving in October .....

Yes,today we had Thanksgiving dinner and you know, this was a serious labor of love. As I must tell you, Thanksgiving dinner is my LEAST favorite meal ... EVER.In fact,tonight,not one bite.Nothing.Nada.But this labor of love was born from a different type of labor.The birth,18 years ago,of my darling Taylor Morgan.Okay, not real labor,in the childbirthing sense of the word because as my older girls like to point out,I didn't actually give BIRTH to them,I had c-sections.Whatever girls.I personally still call it giving birth.Now,back to Taylor,the birthday girl and what the heck Thanksgiving has to do with her special day.Well you see,holding fast to the long standing tradition of having the kids pick their birthday dinner,Taylor has consistently requested turkey dinner for about the last 7 years running.Got to love that girl and obviously I do because I make it and serve and usually one month later do a repeat performance.Today my girl is 18.Holycow,where did that time go.My baby of the first set.Now look at you.College girl.Teaching with Jumpstart.Finding your way beautifully after a year when more was asked and required of you then should be asked and required of anyone.But you,my cute little thing,you have indeed blossomed and you have the world at your fingertips for the taking.That is,if,while your busy taking that you are busy giving back as well.Which I know you are and I know you will.I love you Taylor and miss you face around here on a daily basis but more then anything,I am proud beyond words of you and all you are becoming.

Retard ..... Did I get your attention?

Retard.Hate even writing that word.In fact,come to think of it,I hate everything about that word.Always have.Even before Zoey.What I do love however,is this really amazing video and it's message of acceptance.Yes,it is 10 minutes long but I think it's well worth the time.If you have never watched this before, I ask you,on behalf of my little love,to please consider taking the time now.And if you do,please remember to pause the blog music first.More importantly,if you do choose to watch it, please remember,before you consider using the the "R" word or find yourself condoning the use of it by others around you,remember Soeren's words.They are truly powerful.

Cruising Along ...

And,as I posted to someone just a bit ago ... feeling,dare I say,pretty darn normal.Settling into school.Busy as all get up.Once again raising three little ones and still,hopefully, managing to stay somewhat present and available to the older ones.Trying to balance it all and often feeling more UN-balance,more then anything.Slowly but surely finding my footing and,pausing, amidst the chaos, to acknowledge the beauty of our moments.These days feel,at times,almost unreal.I commented to Mark recently,how life has taken on this almost surreal feel.I try to imagine and recall life before Zoey.And I can't.And that is more then okay.Right here and right now seems to be all that matters.Does life seem to be moving far quicker then my liking?Absolutely.But at least it is moving and we,all of us together,moving right along with it.

This very month, last year,is when life began to spiral out of control and eventually culminate with Zoey's diagnosis of leukemia.I couldn't even imagine back then, projecting where a year from that day, would potentially find us.The possibilities were far too terrifying.But by God's amazing Grace we have our daughter,our sister,our guide,here with us.Zoey is thriving and blossoming before our eyes.I don't want to miss a minute of any it.That was and continues to be, one of the greatest blessings bestowed upon us as we were unmercifully dumped into this world of pediatric cancer:DO NOT MISS ANY OF THESE MOMENTS. So my absence here in the blogworld is merely and quite simply because we are just busy living and cherishing the days.I have tons I could blog about.Tons.Regardless of the beauty and gratitude and perspective we have on living,there still remains to be found, a multitude of issues and conflicts and struggles that go on daily in all of our lives.The key and where the balancing act comes in,is how long we dwell in the heavy or rather the perceived heavy, stuff.I am, a work in progress in that department because I seriously have some extremely heavy extended family "stuff" going on.Complicated and sad beyond most people's comprehension.But once again I choose,out of respect to my tiny daughters journey, to focus and concentrate on the positive and right now I am positive that my immediate family continue on this path of healing.

Not much of a post guys but figured I wouldn't leave some of you hanging much longer.A few pictures.The boys at their jog-a-thon fundraiser at school.Miss Zoey in one of her most favorite places:her front pack.She seriously jumps out of her skin when I pull that pack out.That and our bike rides,she just loves!And then there is our very first blanket delivery.I headed down on short notice this past Sunday.The unit was surprisingly slow and trust me, slow is actually a good thing on the oncology floor.Due to the new protocols in place because of the flu season,I wasn't able to go into rooms.Which was perfectly fine.It just felt amazing to get that first batch dropped off.From what I hear,the blankets were so loved and appreciated.We are planning another delivery in early December and we already have a good start on completed blankets, as this delivery was a small one.Once again a HUGE thank you to everyone who has lent their time,talent and treasure to this project.Would not be possible without you.That's all I got.Love to you all and if you are still coming by and sticking with us for the long haul here at littlewonders,we thank you for that too!

"We don't see things as they are, we see them as we are."~ Anais Nin

Today we move from Childhood Cancer Awareness Month to National Down syndrome Awareness Month.Thus my new button to the right.If you click on it, it takes you to the National Down syndrome Society home page where you can link to tons of great info and resources.Last year I attempted to participate in the third annual Get it Down: "31 for 21",31 days in October and 21 for well,that extra little chromosome.The campaign is simple in concept but far reaching with possibility.Your asked to commit to post on your blog, at least once a day, for the thirty-one days of October. You can write about Down syndrome or not. You can have a family member or friend with Down syndrome, or not. Just choose to do it and just do it. Raise awareness of Down syndrome by taking part. It's that simple.Tricia over at Unringing the Bell is the brain child behind this great blog experience and an experience it is for sure.It is really incredible to go to all the blogs participating and check in on their posts.Some are heavy.Some are funny.Some deal with statistics. While others deal with something far beyond numbers and percentages.Last year I started out strong with the best of intentions.As the month progressed it was obvious something was up with Miss Zoey so I became a bit of a slacker and then bam ... Zoey was diagnosed and that was the end of "31 for 21".But actually,in reality, Zoey's diagnosis IS part of Down syndrome awareness in and of itself.Our children with Down syndrome are at a significantly higher risk of developing leukemia.A fact that the general population may not be aware of.A fact I so wish that myself,or my child,didn't have first hand knowledge of.But sadly and tragically, it is the case.I think for me, to commit to another "31 for 21" is a bit lofty of a expectation for me this year.But I will try and slip in a few things from time to time.Really,after all,the day to day life with Miss Zoey is Down syndrome awareness in it's very own way.It is my fervent hope and deepest desire that during this month,just one person,just one,sees Down syndrome as not an affliction,a thing to pity or fear or turn from.That through the gift of these beautiful children in our lives, that one person changes their perception of what it means to to have Down syndrome and perhaps even envy's us .. just a bit.

The picture I posted is of a beautiful necklace that I received for my birthday.Okay,not really received ... I bought it for myself.How could I resist.It came from my boyfriend.Well,again,not my boyfriend but from our first blog friend ever, who just happens to be our inspiration and who we have adopted the"Slow and Steady Wins the Race",motto.See,I didn't even know what blogging was till Zoey was almost a year.The Down syndrome thing just seemed so inconsequential to us all when Zoey was born.Not that we didn't care but seriously,we embraced it pre-birth and once the medical hard stuff hit,that became our paramount concern.To this day,it still is.The rest will come.As Sam proves daily to us.Rae and I both found ourselves sucker punched after seeing our medically fragile children finally reach heart surgery,only to be nailed with Infantile Spasms.A diagnosis which has left both of our children wearing the battle scars of that fight.But Sam remains our beacon of hope and when I see him sitting on a baseball field,little legs crossed in the dirt,I smile because I so hope Zoey will one day do the same.That's magic to me.Another thing Rae told me was that,if she knew that one day Sam would be the naughty,mischievous boy he is today,that she wouldn't have shed a tear.I try and remember that on my difficult, uncertain days.So these necklaces,called Trilliums,are just gorgeous.Check out the Trillium site and how they came to be and what they are all about.In my case,I bought mine to benefit Rae's hometown DDC.Check out her blog post about them and if the spirit moves you,order one of your own.Each one was written by a parent part of the DDC,which makes them one of a kind.Unique,just like our children.And me,I chose one made by Rae.With our adopted mantra written on it.Allows me to wear it and feel closer to Sam.Thank you Rae and thank you Sam.We are the ones blessed and lucky because of you.

Loved the two pictures of Zoey playing peek a boo with Joe and the video is VERY short as I ran out of memory.Zoey is just now beginning to do a bit of pretend play.Not often but when she does it is so darn cute.Pause the blog music if you want to listen.