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.