Beyond exhausted ...

But it's a good exhausted. The long weekend was wonderful. To say the least. Lots to re-cap but it will have to wait. Headed to CHLA today after church and made a blanket drop. Forty in all. Twenty to our home away from home, 4E and the rest went to other kiddos that needed to be warm and snuggly. A huge and not nearly appreciative enough , thank you, to all who are making this project possible. I have an angel in Utah, Karen, that just keeps sending me the products of her hard work. I have several friends here who donate their time, talent and treasure and I have my girls, who jumped in and helped me do ten over the last few days. Thank you one and all. I could never, ever be doing this without you all. I am hoping to do my next drop at the beginning of March, the 2nd to be exact. It happens to be a little courageous someone's 3rd birthday and I thought that would be the absolute perfect time. The blankets were a hit and boy does it feel amazing to see this project coming to fruition. A beginning to a pay it forward that I will never, ever be able to do justice to, ever.

*The picture is of Jessica and a few of her lifelong friends, who jumped in and helped as well. Thanks girls. I love you all. Had to throw in a few of the princess. These ones cracked me up ... she took out her pigtails and went for the wild woman look instead!

The Blessings that Surround Me ...

As I write the,the big kids are all piled on the couch,laughing like crazy and telling stories.The littlest ones,Charlotte and Zoey are snug in their beds and Mark is upstairs doing the bedtime books and prayers routine, with the boys.I probably will have to wander up in a bit and see if Mark has dozed off along with them.Poor guy,he is exhausted.He has been working like crazy on a new show,Find My Family and pulled an all nighter helping with the end of "CNN Heros:An All Star Tribute" program.He really needs this long weekend but I am not sure how much rest he will get.We have some things we really need to check off on our to-do list.

We had a wonderful Thanksgiving.I mean truly wonderful.Although I did most of the baking and cooking and spent the majority of the day on my feet,it was a actually a very relaxing day.Jess did make an awesome apple pie,as well as the yummy cranberry-orange sauce.However,an addendum to this sentence would have to be,I HEARD both those things were yummy because neither I actually eat.And while I'm at it,some know this,some don't,but I don't actually eat much of anything on the menu.A spoon full of corn,potatoes and some gravy to disproportionately top it and I'm good to go.Although I LOVE the time together,Thanksgiving and the fixings are not my favorite at all.What I do love though,is looking around and seeing all my children together.Danny and Matt blending in because,after all they are family too.Our friend Amanda joined us.Okay, technically she is Matt and Jessica's friend but I consider her my friend also. She is an absolute sweetheart and we are so lucky that she wanted to spend today with our crazy crew.Not a moment went by in this day,especially in this very moment,that I wasn't reminded how blessed my life is.

I want to back track a bit and address the CNN Heroes show.For the third year in a row,CNN showcased 10 extraordinary everyday heroes and from the 10,1 is chosen as hero of the year.This years winner,Efren Peñaflorida,said the following things,all of which bare repeating:

"Our planet is filled with heroes, young and old, rich and poor, man, woman of different colors, shapes and sizes. We are one great tapestry," Peñaflorida said upon accepting the honor. "Each person has a hidden hero within, you just have to look inside you and search it in your heart, and be the hero to the next one in need.

"So to each and every person inside this theater and for those who are watching at home, the hero in you is waiting to be unleashed. Serve, serve well, serve others above yourself and be happy to serve. As I always tell to my co-volunteers ... you are the change that you dream, as I am the change that I dream, and collectively we are the change that this world needs to be."

If you have an opportunity,the show will be replayed a number of times on CNN and I encourage all of you to watch it and unleash the hero within you.

*A few pictures of the day.The kids LOVE Bananagrams.Played twice today.Highly recommend it as family fun ... again,I can only recommend it via watching them play,I can't spell worth a darn.thank goodness for spell check!

"Both abundance and lack exist simultaneously in our lives, as parallel realities. It is always our conscious choice which secret garden we will tend... when we choose not to focus on what is missing from our lives but are grateful for the abundance that's present -- love, health, family, friends, work, the joys of nature and personal pursuits that bring us pleasure -- the wasteland of illusion falls away and we experience Heaven on earth."
~Sarah Ban Breathnach


A very Happy Thanksgiving to all of you that have found your way here today.Those of you who have walked with us and supported us and loved us unconditionally.Those of you who have rejoiced beside us and those who have carried our heavy load when our spirits were broken.We continue to be humbled by the love of our friends, near and far.On this day, may you be surrounded by joy and laughter and those you love.May we each pause for a moment, amongst the chaos of the day, and look with gratitude on the blessings and the miracles that encircle us,ever mindful of those who continue to walk in the darkness of uncertainty.Peace and love to you all.

Swaddled in Awareness ...

Look what arrived in the mail today!!I was so excited to go to the mailbox and find Zoey's Swaddled in Awareness Blanket.Pictures really don't do it justice.It is soft and bright and beautifully made and best of all ... Zoey just loves it.I mean really loves it.She loves the raised texture on the white side and she really kept smiling and laughing at the bright polka-a dotted side and the cutest thing was the way she kept rubbing the awareness ribbon.For those who don't know,orange is the color for Leukemia and this blanket and it's ribbon,represent such a huge part of Zoey and her journey.We will use it and show it off with pride.Our thanks goes out to Heidi,the very talented mommie to Henry,for this one of a kind,darling blanket.I would really encourage anyone who is looking for a unique gift to check out her Etsy shop.Heidi has some great stuff and Christmas is,literally around the corner... sorry for the reminder.

"Most people can look back over the years and identify a time and place at which their lives changed significantly. Whether by accident or design, these are the moments when, because of a readiness within us and a collaboration with events occurring around us, we are forced to seriously reappraise ourselves and the conditions under which we live and to make certain choices that will affect the rest of our lives."~Frederick F. Flack

Miss Zoey and I have had a busy 24 hours.With some antibiotics finally on board we both felt well enough to spread our wings and attend 3 incredible events,for 3 incredible little friends.Friday night we headed to a wonderful dinner benefiting the Gwendolyn Strong Foundation.Saturday morning found us at the finish line for the Pablove Across America Ride and Saturday afternoon, we attended the memorial,celebrating the beautiful life of sweet Kai.Three separate and individual events,different in cause and purpose but all similarly woven with the light and love of three magnificent,young lives.These three children,with a combined age of 11,have taught me more about life and living,over the course of the last year,then I have learned in all of my 45.

The day I found out that Zoey would more than likely arrive sporting an extra chromosome,that is the day my life,our lives, changed forever.It was by God's design,no other,that we were given a gift of a child,whose struggles and fights would in turn open our eyes and our hearts to those around us,navigating the uncertain.We could have chosen to close our eyes,we could have chosen to not see before us,the gift of perspective.I can say unequivocally that Zoey's entrance into our lives, was a turning point for us all.We could turn our head and our hearts to what was being placed before us,or we could choose to embrace.We chose the later and with that choice our world became bigger and began to overflow with others on similar journey's.Those journey's never needed to look identical,they often didn't but the mere fact that we were SEEING the journey's of others meant we had made our choice.These three lives,Gwendolyn,Pablo and Kai,represent only a portion,of the many lives that have effected the course of ours,on a personal level as well as,a family.I have heard on a number of occasions that perhaps I have become bitter or angry or ready to fight and you know,I'll wear those labels.Proudly in fact.I wonder what other human emotions should be elicited when one has seen the suffering of children and their families?Doesn't that mean I am feeling and living and seeing the world outside and beyond my little corner?Doesn't that mean I have answered the call to make a choice about a gift that came packaged slightly different but when opened,brought with it a multitude of other blessings?Along with my bitterness and anger and fight,dwell,joy and hope and faith.And the former three actually fills so much more of who I am and what I am about.

I smiled a lot over course of the last few days.Coupled with those smiles, were a ton of tears as well.I watched families that I love,carry their load and do so with amazing strength,grace and dignity.I cannot take from any of them,the sadness and heartache that has stolen pieces of their hearts but I can join them with unconditional support and an unwavering promise to not leave their side.To join in their fight,whether it is on an emotional level or for a concrete cause.Along the way I hope to adequately express to them what an impact their children have had on my life and how completely changed I am because of them.

I only had my camera the Pablove finish line.The pictures are of Jeff and his cycling coach and friend Rick.And Jo Ann and Jeff with Zoey and also a picture of one of Zoey's oncologists,Dr.Marcio,who joined the ride in Long Beach to the finish.I was so emotional seeing him,as I felt it was yet another unselfish thing he was doing for our kids.I was so bummed out that I forgot it Friday night but Gwendolyn and Zoey are going to have a play date soon so I'll be sure to get some then!

"Are you sick of hearing we're still sick ?"

Well,I am CERTAINLY sick of being sick.One positive,Joe seems to be on the upswing.Down side,Miss Z is DEFINITELY on the down side.We did go to the doctors yesterday.Clear lungs.Good.Snotty green nose.Not good.Her pediatrician said that since she is no longer as fragile as she use to be,he is going to hold off a bit on antibiotics.He is really cautious about over prescribing and running into drug resistant germ issues.He likes to wait 2 weeks for any upper respiratory thing to clear up before deeming it a sinus infection and I am on board with that.He said in Zoey's case,if Friday morning found her about the same,he'd call something in.No visit necessary.Thank you Lord.4 visits in one week and not only am I not liking it but our co-pay pocketbook isn't either.Suffice it to say,today was one of her worst days yet,disposition and all. So unless she does some magic turn around,I'll be calling bright and early Friday morning and having an antibiotic called in.While I was there I asked him if he thought that even with the negative swabs we could still be looking at the flu or H1N1 and he said he doubted it,to which my response was darn,really wanted to check something off on the list.From my vantage point,it looks as if this is going to be one loooong winter!

Cruel momma that I am,we still had 2 of 3 therapies today.I did cancel the 8:30 am feeding one,she was SO not going to be up for that.She hates food and I mean seriously hates food, so I saw the writing on the wall for the direction that would go,before it even happened.We stuck it out for vision and speech.All therapies are done in home so we didn't have to venture out and all of our therapists are really laid back when they need to be and totally follow Zoey's lead.Which today looked a bit like a typical 2 1/2 year old,that didn't feel good that wanted to wield her independence and wanted nothing to do with any of it!Both sessions ... kind of a bust.But she tried.Every once in a while she would give us that darling Zoey smile but for the most part she just felt crummy.Sweet little girl,I just want her to feel better.And me too,as this is the worst I have felt to date as well.I have got to get better and quick.I have a big date this Friday.But not with my husband.Friday, I and hopefully Zoey, will be going to a benefit for the Gwendolyn Strong Foundation and there,I will finally meet the beautiful Miss Gwendolyn and her amazing mommy and daddy.I am certain I have long passed the point of being contagious but still,I would like to at least feel better to enjoy what is sure to be a wonderful,wonderful evening.Which,by the way,I have a permanent button on my sidebar and have posted about it before but if you haven't already,please go and sign the Petition to Cure SMA and join the Strong's as they near their goal to have 100,000 signatures, as a step forward, towards the monumental task of curing this devastating disease.It takes but only a few minutes and your signature might very well mean you have had a part in saving a life.Or many.

That's all for tonight.Nothing earth shattering,which,as I wrote to someone tonight,is rather refreshing and feels like it's been a long time coming since life around here wasn't filled with earth shattering stuff.And,as I write that,I am thinking why Heather, did you just write that?You know,that comfortable/confident hang up I have.Should just zip my lip.Consider it zipped.

*In light of Zoey's demeanor and who could blame her,she wanted nothing to do with having her picture being taken. So instead, a few cute ones on my little grandbaby Charotte that Caitlin sent me.She is such a little doll and I can't wait to see her next week.

Yes,Lacey he does indeed sleep places other than the ottoman!!

My last post,with a picture of Joe passed out on the ottoman,yielded a comment from my good friend Lacey,asking if Joe slept any where else except our ottoman.It seems that I have posted a number of pictures of Joe asleep on the same piece of family furniture.Okay, maybe A LOT of pictures of Joe asleep on the same piece of family furniture.See,the thing is,Joe actually is a major motor driven child.Meaning,there is literally on and off and NOTHING in between.As I have shared a bit before, Joe has ADHD,extreme ADHD and a fun little mood disorder thing thrown in for a chaser.He takes Clonidine for the ADHD and Risperdal for the other.Both medications were difficult for us cave to using but both have made a huge difference in Joe and how Joe successfully finds his way through his little life.So what does that have to do with Joe asleep on the ottoman you say?Well,often Joe just peeters out.One minute he is jumping and bouncing on the ottoman,the next,passed out on that very same ottoman.Today,during Zoey's PT session,Joe found his way to her exercise ball and the result ... the picture you see.Within minutes of placing his head on the ball he was out.For two hours.Out.I of course moved him off the ball but not before I captured this classic pictue.He and Zoey both are still fighting this cold/flu thing.One day I think they are better and then,a day like today or an evening rather and I wonder if they're actually getting worse.Tomorrow we may find ourselves back at the doctors for the 3rd time this week.Oh such fun ..

"Life is a train of moods like a string of beads; and as we pass through them they prove to be many colored lenses, which paint the world their own hue, and each shows us only what lies in its own focus."~Ralph Waldo Emerson






Joe seems to be finding his way through this virus/flu, thing.His nose is full.His ears are plugged and his cough sounds beyond gross,however,he is back to his mischievous,which is a kind and extremely understated description,self.Zoey is okay.We did take her in yesterday,just to be safe.Negative on her swabs, however I learned the other day that the swabbing for the flu's are great if they come back positive,as far as treatment goes but a negative can be a false negative upwards of 40% of the times.That's reassuring.Her disposition is better today and really,more then anything she is just a bit tired and not fighting going down for sleep.Hopefully she will just blow through this.As for me,mine has settle in my chest.Really no other symptoms,which is kind of weird.Yesterday I had a killer headache and unlike two of my daughters,headaches are not my norm, so I figure that was just part of the deal.No rest for me though,as Mark got called into work today and in being called in,that set the tempo of my mood for the day.Which in many moments,wasn't very pretty.I don't love Mark's profession but I do love that he of course has a job.Right now,his company is under the gun to finish a Rock and Roll Hall of Fame show and they are coming down to the wire for completion, so they are pulling in all their editors to make sure it gets done in the time line it needs to.Meaning Sunday plans were blown out of the water.Which makes today really feel like a weekday.Same old same old.Laundry,cleaning and such.Next weekend will be a repeat performance with Mark working both Saturday and Sunday.The industry he is in can be extremely difficult on families and sometimes even marriages.I don't mean to sound over dramatic about that but after 22 years of being a spouse to someone who answers to television deadlines, I can more than attest to the truth in that statement.I of course, am so thankful that he has a job.Especially in today's economy.His work is nearly unfazed in many ways to the ongoing struggles that our country seems to be facing across the board.I am of course so thankful that I have always been able to stay home but sometimes,on days like today, I miss the regular 9-5.I suppose I can't say I miss it because I actually never had it.I'll instead rephrase it and say I just dream of the 9-5 husband.Okay,not husband but MY husband working 9-5.Won't ever happen though, so on days like today I just have to suck it up,get over myself and know it is what it is.We didn't find our way to church either today because with Mark gone,no one could be here with Zoey.Besides,our congregation would probably appreciate our absence in light of the germs we seem to be harboring.No real plan for the day.Windy here in Southern California.Sun-shining,a bit cool though but maybe after Zoey's nap, we will go out and do a little something.Maybe.

I continue to head back to last years posts daily.Today,on a day which found me disappointed that Mark was working and that life felt heavy on my shoulders,I could read with crystal clarity how absolutely NOT heavy things are.I read November the 15,2008 and I re-read November the 15,2008, and I was reminded how far we have come and how not so bad this Sunday really is.Although one similarity to last year is that I said I probably wouldn't be winning Mother of the Year for my behavior and lack of patience on that day and the same would hold true for today.Last year we were separated as well but for much different reasons and today on November the 15th 2009,I needed to be reminded of the gratitude that truly should be my guide.

*A few pictures:Miss Zoey sitting on her little stool.We are really working hard to strengthen her core.Which is,according to her new PT,very,very weak.Which,of course, I already knew.In looking back at last years posts I was also able to see,with amazement,that this time last year,Zoey had JUST mastered sitting independently.During chemo.So although her core is weak ... her strong,courageous spirit will more then help her find her way.I have no doubt of that.Zoey seems willing to stay on the stool for prolonged periods of time,as long as there is something to keep her attention and for Zoey,that means Raffi.Raffi was one of my big girls very favorites and I ordered a DVD for Zoey that she cannot get enough of.We have all his CD's as well.Very interactive and speaks to one of Zoey's greatest strengths and interests,which is music.She has learned the words and actions of stomping, stretching,hushing,clapping,brushing her teeth and host of other things from the beloved Raffi.

Brandon was home for a visit from Arizona.Zoey was so excited to see him and was content to be in his arms the majority of the evening.

The Friday Shake Down ..

...finds us looking a bit like an infirmary around here.Be it a small infirmary but nonetheless an infirmary.With me following Joe around the house,with my handy Lysol wipes in tow.That nasty,didn't look like the flu,is looking a lot like the flu today.Funny,we hit body ache,headache and chills accompanied by high fever,4 days into this thing.I usually see it going the opposite direction.Those symptoms first and the rest comes on the upswing.Not Joe.All of my kids like to do things in their own unique way.So, at 2:45 in the morning,I penned off a Relay Health note to my pediatrician, not because I was overly concerned with Joe and his ability to kick this but of Miss Zoey an her inability to NOT catch it.My doctor said it is entirely possible that Joe had a bit of help getting through this because he did get the H1N1,one dose,last month.If that is what this even is.This of course it just speculation.Today found Zoey a little more under the weather.Raspy voice.Cough.A bit more irritable but not too bad.Still no fever but then again Zoey isn't a fever kid.So much so that in all our months of treatment, when they say expect fevers,it is going to happen when counts drop,she never,ever spiked.Not ever.Have someone tell you, that is familiar with leukemia treatment and they will tell you how unusual that actually is.That doesn't exactly bring me comfort right now but my doctor assured me that she will most likely will spike one if she too has "the real flu".Let's hope she just has a cold.We have opted out of Tamiflu.Holding out as we delve deeper into the flu season because like any medication,antibiotics and anti-virals especially,you can often build a tolerance to them if over used.We both were in agreement to withhold it for now.So .. barring any change,I'll just watch these younger two and hope it passes uneventfully.Jake is totally feeling fine.Happy as a little clam that Joe has passed out this afternoon and that there will be no arguments over what Wii game they will play.My little rocker chose Guitar Hero and Zoey has had a blast watching him.We have a rule of no electronics,Monday through Thursday so trust me when I say it is literally the first thing Jake goes to when he hits the threshold of the door on Friday afternoons.Relatively quiet weekend ahead.Which is nice because next weekend is the complete opposite.So hopefully the littler two will be on the mend and the rest of us can dodge this thing.Taylor was here for a bit this evening and will come back tomorrow,with Brandon who is home for a visit.Jess is having a great visit with Caitlin,Danny and Charlie and Matt,well, he's looking a bit lost without his girl around.Mark and I aren't much of a substitute.I began this post earlier today and I am finishing up at around 11pm.The last two nights have had me up a ton with little Joe so I better head up to bed.Something tells me that tonight will find someone up and restless and as I am bringing this to a close I have that familiar tightness in my chest that says I just might be the next one down and out.Let's hope not ... I cannot afford to be sick.

*Do you see my child's crazy hair!she woke this way from her nap and she wanted NO part in me fiddling with it.I didn't have heart to keep bugging her ... sweet thing.

"If you do not raise your eyes, you will think that you are the highest point." ~Antonio Porchia, Voces, 1943, translated from Spanish by W.S. Merwin

Today I mailed three blankets out.Seems as though The Heart Blanket Project is reaching all corners of our country.Which is very,very cool.I sent one to darling Ashlyn awhile ago.Is she not the cutest?These three blankets are ear marked for three other chromosomally enhanced beauties,all fighting leukemia.I was contacted awhile back by someone who follows Zoey's journey and has supported us along the way and she asked if I would consider sending one out to her friends little boy.Well,of course I would send one out.It was the least I could do.He is four I believe,his name is John and he is fighting AML.He lives in Georgia and I sure hope he likes the little bug blanket.The next goes to a little baby,her name is Colleen and she is only 8 months old and another amazing blogging friend emailed me to bring her story to my attention.She is newly diagnosed with AML and like Zoey she was born with TMD.Her family has a caringbridge site and let me tell you,this child is so darling and her family is facing this new journey with such optimism with their faith being their guide.And of course Colleen too because like with all of these children, they seem to be our ultimate compass.I thought a blanket might be just what she needed so Matt and I whipped up a ladybug one for her yesterday.The last one is for our sweet buddy Kristen.Yesterday she began chemo,AGAIN, and I feel so absolutely helpless and the only thing I could think of was to send her out a blanket.I wish I could do more.So much more.I did give her mom an idea though,for those great little rubber bracelets and she is having them made and will mail me a bunch.I thought maybe,if anyone is interested I would sent them to you,at no cost,to join in solidarity for Kristen and the battle she is waging for the 4th time.Their mantra to see them through this latest journey and what will be printed on the bracelets is"Hoping for Another Miracle".When I get them I will let you know.In the mean time if you could send Kristen and all these other little warriors and their families all your prayers and good vibes.I know they would greatly appreciate it.Speaking from experience,the knowledge that others were praying and sending strength our way,in the moments we felt we were unable and were simply depleted,really sustained us during the hardest of times.

As for the home front here.All is well.Everyone just plugging along.Joe has come down with a nasty something or another.Brought him in the other day to rule out both the flu strains.It was neither.The importance of that is because if it had been positive for the garden variety flu or H1N1, Zoey would have to go on Tamiflu ... immediately.So for now just a cold floating around here and it seems that Zoey has indeed picked it up.Hopefully she can kick it quick and not remain down for too long and become opportunistic to something bigger.Jess is on her way to San Diego to visit little Charlie.I am very jealous of course.I will get my hands on that baby at Thanksgiving though.Which,by the way is right around the corner.As is Christmas.Which is incredible really.I think back to last year and it is a complete blur.I have been going back each day and re-reading posts from this time last year.Like today,the 12th,the day we meet Madison and didn't know,that evening,that we had a connection already, outside the hospital walls.It has been very healing.I have smiled through most of the posts as I continue to be in awe of Zoey's strength, despite the seemingly insurmountable task placed before her.As well as the strength of my family and sometimes even myself.I really,really am amazed that when the scary reality of cancer hit that I didn't fold and give in and give up.I did in fact dig deep.Deeper then I knew I could and I found strength I didn't have any idea I possessed.Sure, we had been through a lot with Zoey already but this was different.Scary,bring you to your knees different.I have also been humbled, once again, by the comments I have re-read and really,the fog I was in then,left me with no memory of most of them.However,in the re-visiting I am able to appreciate and be filled with such gratitude at the people and families that remained with us for the long haul.Those who have rode out the storm with us.The highs and the lows and have been unwavering in their support,regardless of what I have put out there.I have the opportunity once again,today, to extent my heartfelt thanks for loving us unconditionally and for believing in Zoey and her ability to overcome.We have also made new friends along the way and that has been only one of the many blessing of this journey we have traveled.Well,little love is waking... coughing.Which can't be good.More of the happenings around here to follow later ...

Simply Magical ......

Well,Miss Zoey is doing new things daily.We are seeing this little spurt of growth in all areas and she just continues to blow us away.Thought I might share a little snippet of the magic she casts upon our lives daily.My little love.I could just eat her up.Pause the blog music to listen.

Oh and on a side note.Brief as possible but having to be addressed.It was brought to my attention, that quite possibly, some of my words from my post "A View From Our New Normal"was well,a bit out of line.Shocking really, as that was never my intention. So to clarify this part of the post :"My life has been filled to the brim the last year with people too stuck in their own selfish world and unable to "deal"with the sickness and sadness to keep up with our lives or the lives of these other children.This is real.These are real lives and you know,people can bury their heads,avoid because they can't handle it but know one thing,it could be you one day.And maybe that is what scares them and maybe that is the saddest thing of all.That peoples own fear for their own child and themselves, keep them away from experiencing some of life's greatest blessings.".... those words were not directed to any one person or people inparticular.Those words were merely a generalized statement.Do we have people who have dropped out?Absolutely but this post was not about them.And further more I was certainly NOT speaking of cancer or more specifically leukemia in children with Down syndrome,when I said"but know one thing,it could be you one day".I was merely saying that sometimes life hands us a wide range of the unexpected.When we least expect it.So,if I offended anyone or anyone thought I was purposely meaning to be holier then thou,passing out condemnation,being any one's conscience or dolling out reminders in a superior manner,my apologies.Sincerely.I was just writing.That is what I do here.There are not,nor have there ever been, posts meant for anyone to read between the lines as to get some weird message and point across.I'm much more straight forward than that and if you really know me and follow me here,I don't beat around the bush.I frankly don't have time in my life for that.So my apologies again, for anyone who felt it was a direct slam at them personally.Enough said.Enjoy the magic.

Godspeed ....

Gavin Owens,a tiny but mighty fighter earned his wings at 10:43 pm this evening.My family and I fell hopelessly in love with this little guy in July of 2008,after his beautiful momma left a comment on Zoey's blog.The picture you see above was one of the first I ever saw of Gavin.I was mesmerized and captivated by his vibrant blue eyes and his most determined,fighting spirit.I rarely missed a day checking on Gavin.Even when Zoey was in treatment this last year and I would barely be able to get off a post,I still needed to check in on my little East Coast boyfriend before I headed to bed.My older girls loved him as well.They often would call and say,"Oh Mom,did you see the post today about Gavin.?"How is it that you can love someone that you have never even met?That question was asked of me the other day.I didn't have the answer then.I still don't but I did love him.I will miss him.He fought valiantly.Harder then a 3 year old should have to fight.No more fight little guy.

I heard this song for the very first time at my friend Laura's son Luke's,memorial service.Beautiful and so absolutely heartbreaking.Today I thought of Baby Luke and then of Thomas, as he also had it played at his service and now Gavin ...

Dragon tales and the "water is wide"
Pirate's sail and lost boys fly
Fish bite moonbeams every night
And I love you

Godspeed, little man
Sweet dreams, little man
Oh my love will fly to you each night on angels wings
Godspeed
Sweet dreams


Remember,pause my blog music if you want to listen.

A View from Our New Normal ...

An afternoon,four beautiful hours, filled talking, laughing and crying with, the most hopeful, faith filled woman I have ever been in the presence of.A mom who kissed her beautiful 8 year old boy goodbye for one final time this past March and still can call herself blessed and brimming with gratitude,for those all too short but precious 8 years.A few hours this evening,watching my boys run,laugh,and play with a beautiful, bald headed,NG nosed,giggly,smiley little love,while her mom and I talked about the upcoming months of treatment and all the fear and anxiety that goes along with it.A facebook update from a 4 year old cancer veterans mom,wondering how in the world can it be, that blasts are still present after 5 months of treatment?How can this be when her daughter had already successfully fought ONE type of leukemia only to relapse with a completely DIFFERENT kind?A post update tonight,that brought me to tears,that a sweet,courageous,fellow chromosomally enhanced AML warrior,diagnosed only one month before Zoey,is potentially facing relapse .. already.Mind you,she too fought one type of leukemia as a small child,relapsed and beat that,only to fight AGAIN a new type in her early twenties.Has she not endured enough?Has her family not been asked to endure enough?

While there are moments. that I wish I could more easily meld in with the PTA talking mom's at the boy's school ... that world is really longer mine.Nor,to be honest,do I really want it to be.This is where my new normal his now.My heart and life now dwells with THESE mom's.Mother's who would,in one second give their lives,in order to spare the lives and pain and paths of their children.I know that some have come to my blog and clicked away without reading much.A sick child,with sick children as friends, sad posts and updates,is more then they can handle.One time it was complete strangers.I followed my site meter to a "mom's board",I use that word "mom" loosely because what I read was down right painful.One of them had found Zoey's blog and was sharing the address.A few went,came back and said something along the lines of "I don't need to read another f***ing blog on a sick child.WAY too depressing."Seriously ... what kind of a narrow minded and quite frankly cruel "mom's board" was that?Hurt me then and pisses me off now.And believe me,it isn't just strangers that feel this way.My life has been filled to the brim the last year with people too stuck in their own selfish world and unable to "deal"with the sickness and sadness to keep up with our lives or the lives of these other children.This is real.These are real lives and you know,people can bury their heads,avoid because they can't handle it but know one thing,it could be you one day.And maybe that is what scares them and maybe that is the saddest thing of all.That peoples own fear for their own child and themselves, keep them away from experiencing some of life's greatest blessings.If people come here and see sadness and despair,then they have truly missed the voice of this blog.The voices of hope,resounding loudly not only from Zoey but from all of her friends,here on earth and those flying free from above.

I have digressed ... my post's main objective is to shed light on our new normal,not for my sake but for the sake of those standing on the edge in this moment. I come to all of you,and beg all of you who do care, to lend whatever support, in whatever way, you are able.Please look at the faces of Ashlyn,Kristen and Gavin.Study their innocence and pray for them and their families.Send them peace and strength for their journey's.

Embarrassed to say it ...

November is Epilepsy Awareness Month and .. I didn't even know it.Why is that?Seizures were such a huge and devastating part of our life at one time.Actually,Zoey's life.It was,after all, her little brain that was being jostled relentlessly.We all however, lived and breathed Zoey's seizures.Or rather we mostly held our breath.Our lives were consumed with counting seizures and watching for seizures.The little guys even would yell out,"seizure",when she was having a cluster.How sad is that?Our lives were once dictated by guessing,"Do we go up on dosage?Do we go down on dosage?Is the dosage EVEN working?Was that one or wasn't that one?"We,or rather Zoey was a veteran at EEG's.Too many to count.Sleep ones.Waking ones.Over night ones.Video ones.You name it,she had it and she was not even one.We were regulars in yet another area of CHLA.We knew peoples names and everybody knew Zoey.Not the attention we were really seeking.And you think that the 4th floor cancer floor is sad,you should spend the day in a neurology clinic.Devastating.Truly devastating.I shared with someone awhile back,that Zoey's seizure time was a truly dark,dark time.In many ways darker then the leukemia days.At least cancer has some set in stone protocols for cure in place.Not true for Epilepsy.It is often a crap shoot.The doctors are guessing just as much as we are and nothing is more discouraging as to see your neurologist face looking defeated because he is not particularly optimistic on the next medication choice.Seizures came out of the clear blue for Zoey.One day a subtle head drop and the next week an
EEG report that read like a really, really bad horror movie script.Zoey's type of seizure disorder,Infantile Spasms,is referred to as a catastrophic form of Epilepsy.Not what parents wants to hear.It is often very difficult to bring under control and most often leaves in it's wake, severe developmental delays.Well,Down syndrome already held that for Zoey,so to have another zinger thrown in there,seemed a bit unfair.We watched our once smiley little girl,leave us.Leave us like,no body was home,leave us.No smiles.No expressions what so ever.She stopped rolling.She stopped eating well.She just STOPPED.Our journey from and through Infantile Spasms was relatively brief,compared to some, but it was still dark and agonizing.In the end,after 2 frontline medication failures,Zoey found her miracle in a drug that little held hope would work.That was a gift.If you were to head back into my archives from March 2007 - June 2007,there is ,some UGLY stuff.In fact this blog began after Zoey was diagnosed in early February 2008 as place for me to sort out and vent my demons.What it morphed into was what you see today.A place of hope.For possibly,some frantic mother,googling Down syndrome/Infantile Spasms and up pops hope.Because that is what happened to me one sad February evening and what I found,was hope in the amazing Sam.To this day I go to his site and I see Zoey's future.I see in Sam,Slow and Steady Wins the Race,Everything is possible... the impossible just takes a little longer.I see a little boy who is laughing and living and that was the gift and by product,for me, of Epilepsy..Along the way I have "met" the most amazing children and families.There is a core group of us that still stay in contact, over a year and a half later.Of the group,Zoey has found seizure freedom for over a year now,little Hannah,who is Zoey's age,from Georgia,who doesn't have a blog but rather a caringbridge site,is seizure free and has just begun walking,.Dawson was blessed with seizure freedom for almost a year and now is back in the battle and then there is Jude and my little love Reagan, who have battled and battled and battled on their quest to find their miracle cure.There are other loves that I follow as well,Sophie,Bennett,Kendall,Madie,Maddie,and Jackson,who are all on various junctures on their Epilepsy journey's.Lets not forget either, our buddy Jax .On top of his heavy load he also battles daily with seizures.I feel helpless but not hopeless for all of them.They inspire me.Each and everyone of them.So,it's November.Epilepsy Awareness month.Go here or here.Learn more about Epilepsy.The stigma attached and the true lack of funding out there to get these kids to seizure freedom.I say that I don't take Zoey's seizure freedom for granted but do I?Have I become too comfortable and confident that she remains seizure free on a very low dose of medication?Lord I hope not.Zoey has an amazing doctor at UCLA.One,that rumor has it, is retiring.One that has been a source of encouragement and has rejoiced alongside us in Zoey's progress.Zoey has a wild card of a hemispherectomy if her seizure were to return.That is a gift as well.Many children lack options.Many parent have become disillusioned and disappointed with the medical field and often are left wondering,"Does anyone care about my child?"Well I do.And to all my Infantile Spasms families,I'm sorry that I forgot Epilepsy Awareness Month.No excuse.

As I wrote to my friend today,Miss Zoey is 3 for 3 ... September...Childhood Cancer Awareness.October ... Down syndrome Awareness and now November .. Epilepsy Awareness.Zoey sure likes to make sure she is part of the crowd.I really need to tell this girl to be more of a leader rather then a follower!!