Another Goodbye ....

This morning was a 10 mile morning.Each and every moment was spent thinking of Pablo and his family.Each word I spoke, with each person that ran beside me, was spoken of Pablo and his family.I found it difficult to run.Not that I couldn't,I just didn't want to.Seemed too trivial a thing to be doing and when I knew all too well the journey being taken by the most joyful of boys and his most loving family.But I ran and then finally,mostly walked.And when I came home,the first thing I did was check in on the courageous fighter.And he was still fighting and Jeff,his dad was still unselfishly writing.My check in 15 minutes ago took my breath away,it read:"Dear friends, Pablo Thrailkill Castelaz passed from this life at 1:30 p.m.

He left this life in the same way he entered it: beautifully, gracefully and in the loving arms of his Mommy and Papa and dear big brother Grady.

He left this life in the middle of his parents' bed - the bed he's grown up in, from day one until today, his final day.

Our family is grateful for your love and light.

From our hearts,

Jo Ann, Jeff and Grady"



I am absolutely stunned at the pace at which this went.Not enough time but then again, is there ever enough time?So once again,I write to a child.Another child far too young to have left us but who, simultaneously, impacted my life in ways far numerous then the earthly years that they had been given.

Dearest little Pablo,You are a courageous,forgiving fighter who shouldered what was thrust upon you all the while barely flinching.Ever.You are the bravest of the brave.The gentlest of the gentlest and the greatest teacher of all.Pure joy and beautiful light you illuminate and in honor of you, we will all try our best to give a little of that back to the world, as we walk through our lives without you as our trusty guide.

"May the choirs of angels come to greet you.
May they speed you to paradise.
May the Lord enfold you in his mercy.
May you find eternal life."

An Unspeakable and Ultimately Profoundly Unfair Journey:

Tonight I headed out to do my run.Did not feel like tackling another 4 miles, two nights in a row but I went. My motivation as I struggle to finish is always the same: I think of my 4th floor warriors. Not a cliche. Not a line. They are my inspiration. Tonight my legs were heavy but my heart was even heavier. A great deal of the day was spent checking the blog, texting and leaving messages for our little fighter Pablo and his family. Last night ended with Mr.P being my final check before I turned in. I found a recent update from his dad Jeff. A fever landed them in the ED but luckily they were heading home. A sigh of relief and off to bed I went. What a difference 24 hours makes. Tonight news has come that again they will be heading home, this time for good. No more fighting, in the words of his dad. Pablo is nearing the end of his valiant fight and quite frankly I am pissed. Again. I love this child. I love his family. Another child. Another family. People wonder why I have changed and have become bitter. Read for yourselves here. Then find a purpose and plan. I know that one day I will see clearly the reasons. At least I hope I will. Tonight I am mad at God but yet, I still turn to Him. I would not be able to do justice in this brief post to the light and beauty this child has brought to our little corner of this world. He is one remarkable child, whose presence in a room changes the vibe and brings joy to those who are lucky enough to catch a glimpse of it. Pablo is a character of all characters. He is a wise beyond his 6 years, costume donning, miracle of all miracles. The day that 4W was "overbooked" was one of the most fortunate days of my life. Because that day as I headed down the halls of 4E, I spied a bald headed beauty of a boy and thought, where did that little guy come from? Boots on. Mixture of hospital garb and miscellaneous pirate stuff, gave me an inkling we were not talking about some ordinary little fellow. On the contrary. Extraordinary more like it. I love you Pablo.As I have said to your mom and dad, I am blessed and better because our paths have converged. I so want you to keep traveling alongside me. More importantly, alongside your family. The journey has not been nearly long enough. Castelaz family, the Needham's love you.

"In the dark dreary nights, when the storm is at its most fierce, the lighthouse burns bright so the sailors can find their way home again. In life the same light burns. This light is fueled with love, faith, and hope. And through lifes most fierce storms these three burn their brightest so we also can find our way home again."
~ Unknown.

This binder has made the rounds over the last two years.Originally,it's use was intended to be short term.Miss Zoey had other ideas.I vividly remember having Jessica make the little cover insert.We were a week or so away from being discharged from the NICU.There was such an overwhelming amount of material to be taking home.Infant CPR stuff,G-tube feeding stuff,hem-onc stuff,cardiology stuff,ALL her medication stuff .. just stuff.It became,hope for a future in the form of a blue binder.When we arrived home,life was seriously complicated with this medically fragile child.Our number one priority was keeping her alive for heart surgery.No over dramatization there.Ask any of the immediate family.It was our initiation to the term joint effort,where working as a team,was the only way we would,she would,get through this time.Someone was at Zoey's cribside at ALL times.No exception.Time passed.Surgery miraculously came and went and the blue binder began gathering dust.When she was healed enough and ready to begin Early Start,I dusted of the blue binder,tossed all the "early day" stuff and transitioned the beloved binder.It became hope in a new beginning,in the form of a blue binder.I eagerly placed all the info passed on to me by her therapists.Divided into categories:OT,PT,Feeding Therapy. Buying up all the latest and the greatest gizmo's and gadgets and toys.Zoey began to blossom and thrive and as quickly as this new norm began, it was devastatingly cut short:Infantile Spasms made their ugly appearance.And that blue binder full of hope,instantaneously disappeared.The next several months were filled with a journey that I really didn't care to document.No paper trail necessary.My reminder came daily in the form of seizures,non FDA approved medication,steroids from hell and finally, a miracle.Each step chronicled and etched in my mind,forever.And as quickly as it all began,time did that amazing,trippy thing.It passed and the sad and difficult days went along with it.Yet another new norm began to set in and the blue binder was,by that time,long forgotten.Then one horrific October day last year,I begrudgingly had to resurrect that damn blue binder.More info and more paperwork then I could wrap my head around, flew at us at lightning speed.Round after round that binder came with Miss Zoey and I.Round after round I filled it with the daily labs drawn from my precious babies body.Each lab draw represented possibility and progress.Each draw represented our ticket in or conversely, our ticket out of CHLA.Mark would ask,as the binder became chocked to over flowing capacity,"Can't we take some of these old labs out"?Not one, was always my reply.October the 29th,2008 is the first lab draw and June the 2nd,2009, is the last.120 lab sheets,representing 108 days inpatient.Staggering really.And today, as I retrieved that still full binder, from my closet shelf,I was struck.I was struck by the magnitude of the journey of this magical child.As I leafed through this binder,documenting days for our service coordinator for our IFSP meeting,I was barely able to push back that gigantic lump in my throat.I am not sure when I will be able to remove the pages from this binder.What exactly will I do with the pages?Toss them?Burn them?Or perhaps it stays just as I found it today.This terrifying,unfair,sorrowful,joy filled,God guided,blessed time,infinitely and forever,remaining,as it is:an inanimate representation of eternal hope.Hope in the form of a blue binder.

*We had our IFSP meeting,Individualized Family Service Plan,today.We have utilized Early start very little over the last two years.With only 8 months left before we are cut loose,we have come up with the best plan we can to maximize this time.PT:Once a week.Vision:twice a week.Feeding:Once a week.And hopefully Speech:Once a week.If the speech evaluation deems Zoey isn't ready cognitively for that service, then we can swap in an extra PT session.Our service coordinator is great and is truly looking out for Zoey and what will best serve her needs and meet the goals we have get forth.We also have an appointment in a few weeks at the Center for the Partially Sighted.Some may or may not know, that due to Zoey's stroke she has visual field loss along with a few other "glitches".Our vision therapist is outstanding and we are in such capable and loving hands with her.Glasses are more than likely in the cards for Zoey in the not so distant future.We are also fighting the natural tendency for Down syndrome children's eyes to wander inward due to low muscle tone.Trust me,Zoey's eyes are REALLY starting to float.So we have lots of great,HOPEFUL stuff,happening with our little fighter.All of which I am more than ready to jump into.

A quick jaunt to La Jolla ....

We headed out to see Caitlin and Danny this weekend.A perfect choice for a Father's Day outing.We really wanted to see Caitlin before the baby comes in a few weeks.She looks great and feels wonderful.A bit tired but other than that she is doing fantastic.Their place is darling.Mark spent time hanging things up and the organizational freak in me,did my thing.I think the only thing now is to wait on baby girl.We are all so excited to meet this little child and seeing all the baby things set up, made it all the more real.It was a whirl wind 24 hours but so worth the 2 1/2 hour drive there.I'll be making that road trip in my sleep before long!Only thing missing this time .... Jessica.She had to take a CPR re-certification class on Saturday,work in her 8 mile run,which I did early Saturday while she was at class,as well as she had homework and bunch of other little things to get done.Her and Matt hung back,took care of the dog and when we got home tonight ... Mark's favorite,homemade Strawberry Shortcake,was waiting for us,courtesy of Jess.It was a fun little jaunt made all the sweeter having Miss Zoey along.Still so very strange and absolutely beautiful, that we can come and go with her after all these long months in the hospital.Zoey LOVES being outside.She LOVES being around people and we are so blessed that this carefree time has finally arrived for our family.Enjoy the pictures.I had to have one of Jess and Mark when we arrived home.After all,Jess was his first baby.His first little love.Now look ... a house full of little AND big loves.Happy Father's Day Mark .... could you ever have imagined what you would be getting yourself into 23 years ago ... beautiful,isn't it!

*I could have posted another dozen pictures of Zoey listening to Danny play guitar and harmonica ... she just adores music.I am really going to try and enroll her in some music therapy classes once her immune system gets stronger because she responds to music in such a magical way.Thanks Danny for Zoey's private,front row concert.She loved it and she loves you!

lucky: having or marked by good luck; fortunate

"Some luck lies in not getting
what you thought you wanted
but getting what you have,
which once you have got it
you may be smart enough to see
it is what you would have wanted
had you known....
~ Garrison Keillor

I do consider myself lucky.I consider my life extremely blessed and lucky.I look upon the twists and turns of the last 2 years as times of unspeakable pain and equally, as times of immeasurable joys.I wake up each and everyday and know full well, that the mere fact I am waking up each and everyday, is indeed lucky.I do not have to look very far to receive these sometimes subtle nudges because quite honestly,most of the time, these reminders often come so forcibly, that the wind is almost literally knocked out of me.Tonight it came in the form of an update from Lacey,mom to our special little boyfriend Jax.This little guy fights tooth and nail for every breathe.Every day.From there I can send you to Pablo who is in a fight for his life at the tender age of almost six ... is birthday is on Sunday.Pop on over to darling Arabella and see her sweet face and I defy you to hug your 7 month old a bit tighter and not call yourself lucky.Then there is Ashlyn,a little love who happens to have Down syndrome,fought leukemia once and now is traveling that road again .... with a DIFFERENT type of leukemia.Little Gavin is a tiny but mighty fighter who battles daily against his very own body and his family puts one foot in front of another,looks to God for guidance and walks on.Click on Gwendolyn,spend time on her site,call up her archives and read about SMA and then sign the petition.Google Infantile Spasms and then visit Reagan and think about the upwards of 1000 and I didn't accidentally add zeros,that would be upwards of 1000 seizures that riddle her 2 year old body everyday.Stop by and perhaps offer your prayers to a young girl.A brand new mom.Jeana left me the most beautiful comment a few months back,referencing our quote at the top of Zoey's site and told me on that day "I was her solid thing to stand on".Send her hope for her 1 lb 11 oz little Kaely who happens to also have Down syndrome and AV Canal complete.I could go on and on.My blogroll is filled with families and children wading through one crisis or another.Some of these children appear from the outside, to be flying through life and it's milestones,but a certain few harbor within them,medical issues and impending obstacles,waiting for an opportune time to show their faces.Others fight everyday,every moment,just to be here with families who would move mountains to keep them here with them.I'll stop now.You probably get my drift.I am not intending to minimize the trials and troubles in anyones life.I am not asking for anyone to subscribe to my way of feeling or thinking.I am asking that we all pause for one moment today,look left or right and please for this one day,consider yourselves blessed and lucky.

*We are back on the quest for some type of oral feeding with Miss Z.Much to her dismay.Zoey use to be a champion eater.I know I will be repeated myself on this one but this child was g-tube fed for the first 6 months of her life,20 hours a day and THEN began nursing after heart surgery.Unheard of really.Especially with a child with a serious gag reflex and a tongue that rivals no other.By 9 months of age she powered down 2 jars of baby food and by the time we hit seizures at 11 months,it all went down the toilet.Actually she nursed until last August but food ... no go.Topamaz suppresses the appetite,big time.Dulls the senses,big time.Then Chemo and I doubt that needs explanation.So we are back to ground zero.We begin with what they call "crumbing" and go from there.Zoey was none to happy yesterday when we began but by today,she is at least keeping the crumbs in her mouth.I am doing it about 5 times a day and with work and dedication,she will hopefully reacquire a bit of a desire for solid food.Slow and steady we go once again.

Getting into the Groove ...

Summer has arrived and life seems,dare I say,normal. Or at the very least, a really great new normal. When Zoey was first diagnosed and the treatment plan was laid out, it seemed like the end was intangible. So far out of our grasp. So instead of dwelling on what appeared to be the unreachable, we adopted the "one now at a time" mindset, forget about even one moment at a time, one now at a time was about all we could handle. Here we are though and it feels, in some very weird, inexplicable way, as if the last 8 months never happened. I know they did. I see it in my aging eyes and I feel it in my weary body. I know it happened because I have scars that cannot be seen and I harbor feelings deep within me of resentment, bitterness and intolerance that weren't as prominent and on the surface, as before. So trust me, I know it happened. But there is a beauty that comes hand in hand with some difficult journeys. Not all journeys but I believe some. A blessing intertwined during some of life's most gut wrenching, "how will I ever get through this" moments and it is this: those moments that seemed insurmountable, those moments that took you out at the knees and left you unable to breathe, those moments, will begin to fade and if you allow it, you will begin to heal. I call this the gift of God's grace. That grace covers me and protects me during my weakest moments and I believe, prevents me from losing it completely. Which, to forewarn you ... could still happen. For today, this here and now, it's all good. The boys are in swimming lessons everyday. Zoey and I go and hang out in the shade. She is loving the freedom of going and doing. I am quite liking it myself. Taylor is doing her thing. Working here and there. Spending time with Brandon. Jess and Matt are busily setting forth their plan of action for the future. Jess began her Certified Nursing Assistant Program today and is gathering info on different choices for nursing schools. Having her BA already and the majority of the course requirements already done, will inevitability make the road smoother. As for boyfriend Matt, he has decided to do a 180 in career choices. He graduated with a degree in marketing and is now pursuing a career as a firefighter. EMT classes start in July and from there he will be applying to the academy and then possibly on to Paramedic school. And finally there is Caitlin... almost 3 weeks to her due date. She is feeling better and the doctors are not as worried about her as they were a few days ago. She is ready. Danny is ready and we are all ready to meet this new little life. Oh and yes, then there is Mark. He continues to work like a dog and maintains that rosy outlook on life, wearing that trademark smile of his. He is the best and I know for certain, I don't tell him that nearly enough. So, that is the news of the day. The Needham's are grooving and loving each and every moment of it.

*Changed Zoey's Button... again,at the urging of a few of the masses, they wanted to see a more smiley little Miss Z.So,Rebecca once again obliged and whipped up a new one and replaced the header picture. Thanks Rebecca and thank you to those of you who repost it... again.

*Zoey had a blast with this water bottle yesterday. I continue to be amazed by her ability to manipulate items, especially large ones like this, with one arm. She really has learned to compensate extremely well so far with the lack of purposeful movement of her left side, mostly her left arm and hand. She is something else my little one.

*These are the bracelets we will be selling in our fundraising for the marathon that will benefit The Leukemia/Lymphoma Society. Haven't figured out the logistics yet but we'll let you know soon, for those of you interested.

* And one final note ... if you have a minute please read the new little section to the right on my sidebar titled "Our Zoey Grace."Caitlin, our very talented, second born, churned that little diddy out in about 5 minutes flat. She has a gift with her writing. She in-fact will be published in 'Gift's Volume 11" coming out in 2010. Very proud of that girl. She's a keeper.

Free to fly ....

I have often said, over the last 8 months, how scary it was going to be once chemo was over and done with. The time when Zoey would have to fly on her own and we along with her. That time is now and today, on the day of our first clinic visit, post chemo, we are spreading our wings and letting the wind take us where it will. Our day was long. Left the house at 8:30 am and walked or rather slightly staggered, back in around 6 pm. No, I was not drinking but after the last couple years, who could really blame me. Anyway, we were at Children's half of the day and then headed to UCLA for a neurology appointment with Dr.Shields. Zoey was a trooper. Evident by the pictures. Yes, she is in the back of the car. No, I did not transport her around LA in that fashion but it did serve as a nifty changing station and g-tube feeding water hole. She got a major kick out of sitting back there and was quite proud of herself as she tossed her diapers over the bumper's edge repeatedly. Labs look outstanding, without sounding too cocky or over confident because we all know what happens when I am feeling comfortable and confident and that is: another shoe drops. But truth is truth and the labs look great. White is 2.41. Hemoglobin is 14.4,(I think that's higher than the vast majority of you or I), red is 4.64 and platelets are 277,00.ANC is still lagging at 570 but that is to be expected. It will be awhile before her immunity is up to snuff. We go back for labs in 2 months and she will probably have her port-a-cath removed sometime in the next month or so. We talked about the future. Zoey's doctor shoots from the hip and I like that. He said if we could get 2 years out and no relapse, we, or Zoey, SHOULD be in good shape. All in all her doctor was pleased and gave us the go to live our lives. Reclaim and re-enter and that means: maskless. Yes, no mask. How strange is that? Scary strange. So much so I still made her wear it throughout the hospital and in the elevators and parking garage. It will take me a while not having that germ barrier safety net. What will take me no time at all will be sliding, inconspicuously back into society. In fact in between the two appointments I stopped at Coffee Bean, got my daughter out of the car and waltzed right in and ordered up my favorite. That felt amazing. Haven't done that in 8 months. Got a few looks. Not my imagination or that chip on my shoulder. Amazing, seems as though some people have never seen a child with Down syndrome. Or at least their double takes and subtle stares when they walk by, lead me to that assumption. Now the coffee, or in my case, the Pure Chocolate, stop would have been perfect but it elicited a feeling in me that I really and truly would rather forget. It took me back, in one split second, to a time last February, when I dropped Joe off at preschool, walked into Starbuck's with my daughter and felt comfortable and capable and regular. Zoey had had her heart surgery, overcome Transient leukemia,fighting tooth and nail at PT after an inutero stroke and we were just going to hit the "Down syndrome stuff." Easy, right? Wrong. That morning I left Starbuck's and went home, fed my daughter and watched her have her first seizure. IS diagnosis followed and life changed instantaneously, mostly for Zoey. See why I don't like comfy and capable? But there is no denying that that is what I feel right now. That is what I felt today as I strolled out of Coffee Bean. From there it was UCLA. Not one of my most favorite jaunts but had to be done. Dr.Shields was blown away by Zoey. In his words"IS and leukemia is part and parcel" with Down syndrome but he couldn't recall a patient of his that had had both. Well Dr.Shields, this is Zoey we are talking about. She does things in her own unique way. Zoey has gained almost 8 pounds since she began Topamax last May and her dosage has not budged. 6 of those pounds have been gained in the last 8 months. Zoey's IS is considered symptomatic because of her stroke and with that there is a 50-50 chance if we weaned her off Topamax, her seizures would either return or be resolved. His opinion is not to change anything right now and to that I say,"Thank God,"literally thank God. I do not think I could emotionally handle the wean right now. Too much for this woman and I am not afraid to admit it. We will go back in 6 months. Call if we see a seizure. She is on a fairly low dose so we have wiggle room and the card of a Hemispherectomy if we get into trouble. And that folks is an absolute blessing. So many of our friends are still struggling with unresolved seizures and are still searching for their miracle. Zoey is lucky. Despite all of it. From Down syndrome to leukemia and all of it in between, Zoey is lucky. If I ever lose sight of that and become blurred on the blessing of where she is at then I am missing the bigger picture. We are ready to fly. So often in the past I have been just flapping to no avail but today I am lifted and carried by hope and faith and by one little girl, that I spent the day holding and hugging and kissing and telling her how proud I am of her and how proud I am to be her mom.

*I want to extend a HUGE thank you for the amazing outpouring of support in word and comments for my marathon and the generous donations to my fundraising efforts for Team in Training. I am grateful and humbled and thank you all from the bottom of my heart.

*I wanted to also say that somehow I lost my entire blogroll and had to start from scratch. Please do not be offended if you are not there. I will have to wait for a comment from those who are are missing so I can add you. I tried to go back on the last several posts but I KNOW I have missed a great deal of you.

*Zoey has a new button that Rebecca so lovingly created for her. I would be honored if people still posted one for her as prayers are still needed. Zoey has a long road ahead of her.

* Last but not least, please keep a few people in your prayers. One our little buddy Jax. He is having surgery tomorrow and although the surgery is relatively routine, this little guy likes to keep everyone one on their toes and could use all the good vibes he can get. Then there is my Caitlin. Baby Ava/Emma is due in less than 4 weeks and Caitlin is starting with some possible Preeclampsia symptoms. As a mom, being so far away from her leaves me feeling helpless and of course worried so extra, extra prayers for her and baby girl. That's all. If your still here, thanks for hanging. It was a long one. I swear, this new era should include some shorter posts and new format or I might lose some of my beloved readers.

Let the Fundraising Begin ....

To your right is a link to my fundraising page.I really hate doing things like this but it's got to be done.Not for me,but instead for all those who have have fought and continue to fight these dreaded diseases.Like little Ashlyn.I have added her button below as well.Please visit her and please pray for her. She is a darling child,who just happens to have Down syndrome and has already fought AML,just like Zoey, and now,like many of us who are traveling this road fear,she has relapsed.She needs your help.As well as the countless others I have talked about and fallen in love with over the last 8 months.Zoey is asking for your help.Without the incredible research and advancements through allocations of funds raised through organizations such as Team in Training,she most likely wouldn't be here today.I have a great deal of money to raise over the next several months.$3,300 to be exact and Jess has the same.She has already sent out 100 letters asking for donations and this venue is how I hope to raise my portion.I have also had some of those neat little rubber bracelets made,1000 of them,they say "The Gift of Zoey's Grace",get it,Zoey Grace.Anyway,I will also be selling those for $5.00 a piece and will ship them to you.Order one or several and maybe consider doing a fundraiser of your own that can be donated directly to my fundraising page.This is just the beginning stage of the bracelet thing.I am not quite sure how that will work out.However,what I am sure of, is that this needs to be done.A little thing.With big implications.And As I have posted on the side,one of my favorite quotes,"We cannot do great things on this earth. We can only do small things with great love." ~Mother Teresa.The Needham's love you all out there in blogland.Zoey loves you.We can do this together.I know we can.

*Another picture with explanation:Zoey does NOT stand.NOT even close BUT this is what the little stinker does when you try to put her down and she doesn't want you to.She locks up her legs and holds her ground.This child has gotten quite the personality.She may not be able to verbalize or sign but boy does she get her message across loud and clear!!

Another Graduate .....

Well,Miss Taylor is officially a high school graduate.We are so proud of this child.She has had to really step up and take on so much extra this past year.She has had to become the second mommy AND daddy around here and that has often seemed to be such an unfair burden to have placed on the shoulders of a yet 18 year old.Nonetheless she shouldered it and carried and did a magnificent job.All the while trying to process her own emotions of having a very sick baby sister,who she adores,juggle work,manage her studies and maintain a relationship with a really great guy that we have come to love,Brandon.Throw in the fact that she suffers from debilitating migraines as well and I think you would have to agree,she is one amazing girl.Hard to believe I will be saying goodbye to another of my "older set",as they take flight into this great big world.But how blessed are we to have them flying.In a year that has found us watching others, whose paths will never venture in this direction,we are all the more grateful and recognize what a gift,a future,truly is.Taylor is off to Pepperdine in August.Not far but far enough that I will miss her presence here daily.Wonderful things await you Taylor.You are going to flourish and blossom and grow all the more and you certainly will do more than fly,you will soar.

*The day was fast and furious,like most of them around here but boy was it nice to celebrate this milestone .... together!Here are a few pictures of the day.Graduation ended at 8pm so by the time we got to taking pictures we were all ready to get home and eat.The one picture needs a bit of an explanation,the one where Taylor is crying.Her emotions were running fairly high today and here she just couldn't keep it together any longer.We just cracked up the way Brandon just was at a loss what to do so he just looked ahead and tried his best to smiled.Poor Taylor,she was so sad and sweet Zoey knew it too.Oh and check out joe in the family picture ... that about sums up Joe!

This Side of Chemo ...

I have to be honest,I really thought things would look different from the other side.I thought my days would be spent wondering and worrying about Zoey's future and the dreaded "R" word ... relapse.I thought I would spend an exorbitant time pondering the what if's and contemplating life if leukemia decide to show it's ugly face again.But I have to tell you,I have spent little or no time at all thinking or talking about any of it.Maybe it's denial or avoidance.Perhaps burying my head deep in the sand.Maybe it's shell shocked exhaustion.Maybe it's just the mere fact I do not have a single moment to stop and think at all.Or perhaps it is the amazing grace that once again envelopes me when I truly relinquish control and see this life for what it is and that is:an absolutely beautiful life.A single look at Zoey and one could see nothing else.I find myself eager to reenter the world.Go where we want, whenever we want.Unrestrained from rules and the paralyzing paranoia of germs and crowds.I am planning and contemplating outings and activities.I am anxiously awaiting the day I can stroll into Starbuck's and Target,Zoey in tow,no mask and be a regular mom,doing regular stuff with her children.I long for the time we can all go out to dinner.Which, as a family of 8 plus boyfriends and soon to be grandchild,is incredibly insane but I cannot wait to say "Table for 10 plus 2 high chairs please".These are the simple things I long for and we are getting there,little by little.Taylor graduates on Friday,outdoors,so we all will be going.Yes,even Zoey.Life on this side is still hectic and crazy and ever so busy but beautifully busy.No tubes and lines.No late night vitals.No sleeping bag and bench to sleep with and on.No communal bathrooms and trust me,I miss that the least.I do however miss intensely our friends who are still walking their journeys.I call and check in and have planned visits already.And as for Miss Zoey ... she hasn't missed a beat.She looks healthier than she did 8 months ago.She has MORE hair than she did 8 months ago.She has reached milestones that we could never have imagined she would reach, 8 months ago.Her road ahead will be scattered with other obstacles.That is a given.That was a given from her very first breath.But today,at least she has been blessed WITH a road.We only have 10 months left of Early Intervention.We intend to capitalize on that to the fullest.OT,PT,Vision and feeding therapy, as she has become totally g-tube dependent, as well as whatever else we can get our grubby hands on.She has barely been able to begin Early Start due to all her challenges.Flat on back for 6 months until heart surgery.Recover,therapy for a few months and then BAM,Infantile Spasms.Recover, a few more months of therapy and then BAM,Leukemia.My heart cannot take one more BAM,thank you very much.So, as we begin our walk on the other side,we walk with confidence and faith ,as our eyes are fixed on the future.We have our first post chemo clinic appointment on Monday.Poor baby will have to be accessed again.She hates that.That appointment will lay out her post chemo plan.How often we have clinic.How often we check labs.When her port will be removed and when will we be able to say "Been there.Done that"When will we be able to say Zoey is cancer free?When will we truly be able to breathe deeply and say this is done?Monday we also have a follow up neurology appointment with Dr.Shields at UCLA.He hasn't seen her since September ... he is NOT going to believe what has gone on in the last 7 months.I think he has been fairly impressed with the resiliency of this child before cancer became part of her medical history.Lord knows what he will think now!Zoey has been blessed with seizure freedom for a whole year now thanks to Topamax.A drug that no one thought would work.Including Dr.Shields.There is not a day that goes by that we are not filled with complete gratitude and humility for that gift.We are totally loving life on the other side.We continue to be blown away by the tenacity and courage of this small child.We continue to be filled with hope in the future and fully intend to savor the moments and days here on the other side.

Effortlessly .....

I appear,appear being the operative word,to be picking up the pieces and reclaiming our lives, with such ease that it scares me a bit.Everyone who knows me, knows that feeling comfortable and capable usually sets me up for ... something.What?Who knows.But each and every other time we have passed through a dark time with Zoey,I rally back only to be blindsided.That light at the end of the tunnel was really a train and there I am wondering what the heck just hit me.As for people,many well meaning, very loving people, who say,"What else could there be?You have had your share,Zoey has had her share" ... to that I say ... SHHHH!!DO NOT SAY THAT...EVER.Life does not work that way.God does not work that way We do not get our allotted portions and suddenly the powers that be say,your done.Unfortunately I have seen too much that blows that theory right out of the water.Actually,Miss Zoey blows that theory right out of the water.Instead of dwelling on the possibilities,the what if's,we intend to live the possibilities.We are a family brimming with possibilities and God has seen fit to bless us with the opportunity to do just that.Live the possible.I am not saying that I might not need some good old pharmaceuticals to bring those possibilities to fruition but we are surely living,fully and completely, here in the Needham household.Our busy household doesn't leave much time for anything else but aren't we so lucky to be living.Cherishing our moments.Planning and for the first time in 7 months ... doing.Sunday Mark,Zoey,the boys and I went to the park.No mask for the little love.Just the beautiful sunshine on her unobstructed face.A little family at the park,seemingly regular from outward appearances but I wanted to shout "Hey everybody ... you know,my little miracle here hasn't been outside for 7months."That is huge.Hugely fortunate that is and there is not a day that goes by that I do not get that.My mission is to see to it that everyone "gets it".Not that they have to experience things so heavily and so helplessly as we have but instead, through Zoey and our journey alongside her,that we teach about living and not FEARING.Again SOUNDS good and this is where the pharmaceuticals may kick in but,for today, this is where my head and heart are.Zoey is doing SO good.Mischievous and attitude filled and I am loving it.She is arching her back when I am putting her in the carseat after being outside.She is grunting and growling at me when I am going upstairs to put her to bed.She is pushing me away when she WANTS me away and she is rolling all over the house finding things to get into.She is happy and smiley and she is looking and feeling better than I have seen her look in a long time.The week is busy.Last week of school.High School graduation for Taylor.Fundraising begins,right here,on this blog,for my marathon and oh yeah,I need to squeeze in my running 4 times a week somewhere as well.That just scratches the surface of life around here.But at least we are home.Only for 6 days so far but funny,that 7 months of living the way we lived.Surviving the way we did.Watching Zoey endure what she needed to endure.That difficult time is already fading but my gratefulness and appreciation for all that had to happen to get here,is crystal clear.Well,time to wind this up.Could go on and on but I have baking for preschool teachers to finish up.Maybe bed will come by midnight.See,some things never change.

"Difficult times have helped me to understand better than before, how infinitely rich and beautiful life is in every way, and that so many things that one goes worrying about are of no importance whatsoever."~Isak Dinesen

About says it all for me.Words that ring truer and clearer than ever before.So has been the greatest lesson learned in the journey of Zoey's life over the last 2 years and most especially, the road of the last 7 months.I hope I will call upon this quote when I falter and lose sight in the bigger picture.Because I will lose sight in some moments.Bound to happen.I wish it were as easy to always be looking with eyes in focus and crisp with clarity.Unrealistic expectation.But then again, I am the queen of unreasonable expectations. As for today,in this very moment,I think I am seeing the richness and beauty with unobstructed vision.Having Zoey home and somewhat regaining control of our lives,reclaiming routine and reconnecting on even the simplest levels, has been simply beautiful.Seeing Zoey fully engaged in the happenings around her is absolutely breathtaking.Her wide eyed wonder at watching her siblings and the antics of our everyday life, is joy in it's purest form.I see her thriving already,in a mere 5 days.One can only imagine what the months ahead will hold.We feel whole.Of course minus Caitlin and Danny and soon to be baby girl.Yes,I refrain from saying Ava, as,surprise,surprise, my second born who had a physically painful time picking out candy at the grocery check out line as a young child,has MAYBE changed her mind on baby girls name.But that is a whole other post!We are as complete as we are going to get at the moment.We are rich,life is indeed beautiful and we are so blessed.

* Pictures from the last few days, as well as Zoey's first official outing:Picture taking before Taylor and Brandon's Senior Prom.Aren't they a darling little couple?

Another Angel ....

News came earlier today that sweet Sol Merie has earned her angel wings.Tuesday,while loading Zoey's things into the car I ran into Sol Merie's Dad Alex.He was getting ready to bring the car around for Sol Merie and her mom.I popped outside, kissed Sol Merie and her mom and told them we loved them.I knew the time was drawing near.Today my heart is heavy at the loss of this sweet child.I will forever remember her as the joyful, impish,kiss blowing,face making darling child she was.I will forever remember her as Zoey's counterpart, joined together by an extra chromosome as well as a fight against a dreaded foe.I will forever struggle in understanding why her cure was not to be.I will forever be blessed and better for knowing this very perfect,very precious child.

"May the choirs of angels come to greet you. May they speed you to paradise. May the Lord enfold you in his mercy. May you find eternal life."

"Peace - that was the other name for home." ~Kathleen Norris

I am at complete peace at this moment because my sweet Zoey and I are home.This post could be long and detailed.Full of emotions of past,present and future but instead I will keep it simple.Feeling incredibly blessed for this moment.Knowing the road of the last 7 months has been long and difficult for the tiny but mighty warrior Zoey but standing in awe of the grace by which she has traveled that road.Tonight I placed my little love in her crib,gazed at her peaceful face and thanked God once again for bringing us to this moment.More of an update tomorrow.