Chemo Begins ......

How to begin.So much to be said and no adequate words to say them with.I am home.Mark insisted I go.I hated to but in the end I knew it was the right choice.I have only slept about 12 hours over the last 3 days and haven't eaten anything since Monday.Not proud of it,just the truth.I needed to come home to see the boys.The girls too.They were coming home with their boyfriends.Jess and Matt took the boys trick or treating.The boys were so excited.All my kids,under the same roof together ...except Miss Zoey.At one point tonight though, I almost told everyone to quiet down because the baby was sleeping and as I sit here, it feels so strange to not have the baby monitor right next to me to check on her every once in awhile..my routine that has so abruptly changed.However,I really should head upstairs to shower.Another thing that I have not done over the last few days.I should be falling over from fatigue but a weird second wind has hit.I think I am afraid of going up to bed and not hearing Zoey's gentle rhythmic breathing.Afraid to see her empty crib or look at the darling stuffed owl that Caitlin bought her but can't give her because your shouldn't have stuffed animals that could be potential sources of dust,germs and mite type things.Caitlin also bought all of us beautiful journals.Even the boys.A place to jot down our thoughts ,fears or to simply vent.so sweet that girl of mine. I left about an hour after they gave Zoey her first dose of chemo.The first is in pill form that is dissolved and given via her g-tube, twice a day, for 4 days.The second is given intravenously through her port,continuous, for 96 hours.I have checked in with Mark a few times,ok,more than a few.She is doing great.Right after I left she was smiling and waving to nurses.I am trying not to take that personally.No, I am just thrilled she was perking up.Danny and Caitlin stopped by the hospital on their way through from San Diego and she even handed out kisses.The past two days, Wednesday and Thursday, just wiped her out with tests,procedures and all the blood draws.Because we caught the leukemia in it's early stage,her numbers aren't horrible and her spleen is not enlarged and she is beginning this whole "thing" feeling physically healthier then some kids do.We have no idea what the next several days will hold.Hard to say when some of those nasty side effects will show.For today we are so thankful that the afternoon held glimpses of our sweet little girl.Emotionally,now that chemo is under way,for today, I feel a sense of peace.Not necessarily that I have come to some acceptance of the path that her life is taking,or the detour that has been thrust upon her but for at least today, the unfathomable reality of the total lack of control I have in this part of her journey.Maybe if perhaps I came to the realization of my complete and utter lack of control in the ENTIRE journey then maybe that sense of peace would be present in more of my days.This child is amazing.Her strength is truly my strength.My other children are amazing.As I glanced around the living room tonight, I felt such pride in these children as well as sadness that our littlest member was not here also.Taylor said that even the dog is acting strange.Taylor said Lola has been walking around the house whining.Lola might seem disinterested in Zoey but she knows that that little person that rolls all over the floor trying to get to her ..... isn't here.I want to leave you with a little story.Wednesday,when I was waiting for Zoey to get out of the biopsy surgery, I headed down stairs.On my way down from the seventh floor,the elevator stopped at the dreaded 4th floor.On walked a woman.She and I were the only ones on and we said hello and I asked if she had a child there on the 4th floor.She said yes and I just started crying and said I would probably be heading there later, with my own child.We parted ways.20 minutes later we found ourselves together once again in the elevator.As we headed up, people began to unload one by one.We got to the 4th floor and she didn't get off.Three floors later she got off with me.She took my arm and said"I was going to get off at 4 but I saw you and knew you were having a hard time.I want to tell you that you will get through this.God will see you through this.Be present in this moment.Here and now.The rest will follow."She gave me a hug and returned to the elevator.That moment was one I will never forget.The minute or two that it took her to outstretch her hand and heart to me,were minutes that will forever be with me ... forever.Well,I am fading fast here and a tub or shower is in order.Again, thank you one and all for your support and love.Thank you your prayers.Today I would like to think that those very prayers were responsible for the little reemergence of our Zoey Grace.Tomorrow,another day,prayers of strength and peace to my little loves body.Prayers of healing.As she goes I go.That ever changing ebb and flow of Zoey that is my gage and compass.I go with her.I always will.I am strong because she deserves no less from me.I am strong because she is my little hero.Keep fighting my tiny warrior.Momma is so proud.

Another Day ....

After one am.I am exhausted.Physically and emotionally.I feel as if I am walking someone else's life.Watching my child endure this is far harder than I expected.She is already so not herself.Two days of surgeries.No sleep.The beginning of chemo.They put in her port.Much easier for draws.They also did a lumbar puncture.With the belief that the puncture COULD introduce cancer cells into the spinal fluid,two forms of chemo were administered via her spinal fluid.She remained restless the entire day.Unable to give into sleep.No smiles.Just wiped out.FINALLY around 8:30 I really felt that she was is pain.They began a little morphine.Seemed to settle her a bit.Her heart rate is up as well as a slight fever.Probably chemo related.But they have to make sure so they drew blood to eliminate the possibility of blood infection as well as are checking her urine.so far blood culture are showing negative.We will see about the urine.Tomorrow or I guess today,the real 1st round begins.Nothing unexpected.She has been officially diagnosed with AML M7.common for Down syndrome and children born with her type of blood disorder.Nothing surprising there.I cannot believe I am here.We are here.Such a sad floor.I want to run away with her.Take her home.Let her roll around the floor.Lie in her own bed.See her brothers and sisters that so desperately miss her.I don't know what else there is to report.No words.Hardly any prayers in me.However I do find myself ,without be conscious of it,praying each and every time I am holding her.Praying for God to guide her and carry her through this.Please pray for a text book course for her.Few, if any problems or complications.I selfishly believe she deserves no less.I find it hard to not be angry and bitter.Mostly I am terrified for what lies ahead.Thank you all for you kind words and support.This is going to be a long haul.Please stay with us.I feel abandoned in so many ways.Losing peoples support and prayers along the way would be more than I could bare.I need people to do my praying for me.I just can't do it.not now.Pray for Zoey.My heart is so heavy for this child.Unable to see clearly, purpose.So surreal.so very sad.

A Day Like No Other

Hi everyone. Heather's husband Mark here. I know that any post I write will not even come close to those my wife puts together on a nightly basis.....but here goes. Poor Miss Zoey.
Her day started at 5 am and hasn't really ended yet and it's 11:40 pm as I write this. She has literally been poked and pricked from head to toe. Heather drove Zoey to the hospital while I got the boys together for their day. Taylor stayed home to help out and she did a fantastic job! I eventually met them at noon, just in time to get the bad news from her oncologist. That's right, her oncologist. We used to call him her hematologist but that all changed today after the results of her bone marrow biopsy came back.....AML. We knew the second he walked into the room by the look on his face. That just added to the already messed up day. (Heather will fill you in when she gets the computer in her hands...watch out!) The short version is that no one walked us through the bioposy procedure, one nurse attempted to use a dirty pulse oximeter she had picked up off the floor, another nurse asked, "Does she have a central line?" The answer was no. "Oh, well, I have to draw blood." OK. This is a children's hospital. You would think they draw blood on a regular basis...right? WRONG. Heather asked is she was comfortable with it, and her answer was a resounding, "Been doin' it for 37 years!" Really, then why were you not able to get it on the first or second try and have to eventually give up and send us to another floor to get it done. Heather was bitter to say the least. I'll leave it at that. Then Zoey gets the biopsy done. Heather didn't know what to expect because nobody explained anything to her. They basically just took her away and said they'd be back in 15 minutes. Nice Job people. Way to make a nervous mom feel at ease with this "let's find out if she has cancer thing" we're trying to figure out. It gets better. We meet with the Doctor, and he gives us the news. Just as we suspected. Shocker! The Doc then tells us they don't have any beds available on the cancer floor and that we might have to go home and come back tomorrow. I don't think so. We have already turned the family inside out saying Zoey wouldn't be home for a while. We can't go home and then do it all over again the next day! We waited for three agonizing hours for a bed, and went through the gammut of emotions during those three hours. At 6:15 we got to the room and met some very nice doctors and nurses. We were told by the Oncologist on the floor that they weren't going to touch Zoey tonight. There was no need. We'll just let her be and catch up on her much needed rest. HA! As of the time of this posting, there have been three attempts from different people to draw blood from arms and ankles. Another long needle stick in her arm for a TB test. She loved that. And to top it off, the reason for the problems is because of all the previous botched jobs. Wow. And because they don't know if the line they eventually got will still be good in the morning, they may have to do it all over again because they will need more labs. Phew.....I'm exhausted thinking about it and getting it out for you. I can only imagine how Heather is doing. She is amazing. The best Mommy any child could ever have. The best wife a man could ever have. Love and Faith....her foundations. I can only hope and pray that tomorrow is a better day. That she manages to get a little rest. As for little Miss Zoey ... she will get a port put into her chest in the morning for all of her meds to be administered. While she's sedated they will also do a lumbar punch to check her spinal fluid for any leukemia cells. The Oncologist said that they could start her first round of chemotherapy in the afternoon. We want to make sure that there are no conflicts with her seizure medication before we start. They tell us to prepare for four days per treatment. She then has to rebound. Depending on how long that takes, we could stay 2, 3 maybe 4 weeks. If she responds well we can bring her home between courses. If not, we'll have to stay through until the next course starts. I believe they are planning on five or six rounds. Time will tell. Please, please continue to raise our family up in your prayers. Thanks to all for your support. Without you, this new journey would be even more difficult.

Did this post actually turn out to be longer than one of Heather's? I don't know if that's possible. I only hope that it comes remotely close to hers, and let's you all get a glimpse of what today was like. Stay tuned.....

A New Normal Begins ....

It's a little before midnight and I had hoped to be in bed by now but there is just so much to get done.We head out tomorrow at 5am for Zoey's bone marrow biopsy.The exact time of the procedure is around 7am.She will go under general anesthesia and hopefully will be in recovery before we know it.From there it will be a waiting game.We will hold tight for a few hours and then we head to her hematology/oncology doctor.I have always referred to him with both titles but I suppose now he will be known as Zoey's oncologist.I really hate that.In between the biopsy and when we reconvene with the doctor, we head to cardiology for a echo cardiogram and chest xray.I called her cardiologist on her cell phone.Yes,she gives me her cell phone,which she personally answers.Is that crazy and wonderful or what?She figures they will want to know her heart function before treatment starts so we will be squeaked into her schedule.The beauty of people who surrounds us has more then shown itself already.The day has been crazy.So many things to try and get in order but actually, we have no idea what exactly to get in order for.The kids well,they are doing alright.The big girls wish they could just swoop in and take charge of the boys.They will do what they can but reality is,life for them, has to continue forward.Emotionally we have been all over the map.Some moments find us repeated the news with strength and forthrightness.Other times,I choke on the words.Now becomes the real test of living moment to moment and giving complete control over to God.Again.As for Zoey,she has been relatively happy.Smiles but she is tired.You can see it in her.The biggest thing you see is how pale she is.I hadn't really notice until yesterday.With all her numbers off a little,it's no wonder.I wish I had something else to share.Like it's all been some big mistake.I have rode the elevator at Children's,with Zoey,on and off for the last 20 months.We have been on every floor except the 4th.The cancer floor.No other way to say it.I have been known,when the elevator has stopped at the 4th floor to whisper to Zoey,"Baby girl we don't want to get off here,Ever."However,tomorrow, I fear that will be our stop.I will walk through those doors and our new normal will begin.I will post tomorrow.We thank you all from the bottom of our hearts, for the love and out pouring of support that we have already experienced.Amazing.Simply amazing.Keep those prayers coming.They will sustain us.Also,if anyone knows how to make a "button" for us to post for people to link to Zoey and post on their blog,could you please email me.I don't have the energy to explore it right now.I am off to finish packing and catch a few hours of sleep.Until tomorrow ....

"Faith is being sure of what we hope for and certain of what we do not see" Hebrews 11:1

I do not know how to say this except to just say it. It looks as though Zoey is about to embark on her toughest battle yet. Today we found out that more than likely Zoey has Leukemia. I cannot believe I actually just wrote that. Beyond surreal. Zoey and I were at Children's Hospital of LA today for a check up with her hematologist/oncologist. After some routine blood work, the early indication is, that it is in fact, Leukemia. Wednesday she will be having a bone marrow biopsy and that will give us a clearer picture of what we are dealing with and what direction we progress. For any of you that have followed us for long, you know the obstacles that have been placed before her. One would only have to look at the side bar under her name and read her story, and I would find it hard to believe that most would not think she has had her fair share. More than her fair share. What we need right now are prayers. Prayers filled with strength and healing for this sweet child that has endured more than any child should ever have to. I will post more as we know more. I am at a loss of words tonight. The day has been long and my mind and body are weary. As for Zoey ..... she is her smiley, happy self. I wouldn't want it any other way

These are a few of my favorite things .....

Well, this marks my 20th post for raising awareness for Down syndrome month. I am going to fall short of my commitment to blog"31 for 21" but I did do my best. I was sidelined for a few days with Zoey's minor scare that she put into me, and quite frankly there were a couple of other nights that I was just too beat. I am going to try and I say try, to finish this week off strong and post daily but ..... don't hold me to it. I might add, that what's to follow isn't exactly exciting stuff either. But it does involve Miss Zoey so I guess that it once again constitutes fitting the bill for spreading the love. I posted some pictures of Zoey with one of, or actually a few of, her favorite therapy type things. Really, all that Zoey "plays" with has the under lying thought and ulterior motive when purchased, to help her along the way on the cognitive, gross and fine motor development areas. These fun things are Oballs. Zoey loves them and they are the perfect thing for her to grab as they are great for tiny fingers (or toes, notice picture #1!) to grasp and they are bendable and pliable. Playing with balls, in general, are one of the only times where Zoey will bring her left hand into play or in conjunction with the right. One of my favorite pictures, if you notice, is the one where she has hold of her RIGHT hand with her LEFT hand. We hardly ever see that. I love it when we do. The video also shows Zoey with a couple of her other favorites. One: Fabric. She loves fabric. The gaudier the better. The more sparkle and glitz and she's all over it. She just recently learned peek a boo using fabric. She cannot do it with her hands but seems to get the idea when we use fabric. The other nifty thing you see, the green button, is an assistive communication device. There are all types of these and this is one of the simplest. We usually record something into it, here it's my shrilly singing voice and the idea is for her to push the button when the song or voice is done and she can hear it again. She is beginning to get the hang of it. With Zoey, it has been trial and error finding things she is interested in. She really lets us know, in her own way, what she does and does not like. So far here is the break down: She definitely does NOT like" bells and whistle" toys. Saves us money there. For instance her Baby Einstein exersaucer, not so interested in that. However, the things we know she loves are: Books, all kinds. DK flash cards, music: lollipop drums, maracas, xylophones, cd music like Raffi, Jack Johnson, Tickle Me Elmo, pie tins with mardi gras beads and well, you get the idea. She is a tough one sometimes when it comes to therapy because she has a definite little stubborn side to her. She flings the unwanted item over the side of her chair the moment she does not want or has grown tired of a particular item. So, we plug a long and try finding things she responds to. Oh and she also loves mirrors. We bought her a 2x2 safety mirror so we can entice her to engage with the "baby" in front of her long enough to work on the next milestone: sitting. She will sit momentarily by herself but the minute she does not sense the comfort of something behind her, over she goes. We are hoping to have her sitting by her 2nd birthday. That would be pretty great. It would open a whole new world for her. I keep telling her that and she doesn't seem to be listening! See, who said she's not like any other head strong, independent child? One more thing and I'll be done linking the heck out of you, if you have a child that needs some extra help in the feeding department I recommend visiting the Equipment Shop. Two things there are: maroon spoons and a great flexi cut cup. Zoey eats really well when we use these spoons and we are working on the cup. That's about all for tonight. Just a glimpse into some things that keep the little love busy throughout the day. If I let her, she would really just prefer to be held all day. Which, I oblige her with...a lot. With all she's been through I find it difficult sometimes to push her very hard. Some may say I am doing her a disservice but I know things will come in time. I continue to try and find the balance with therapy, extra stuff I do and just living life. I am sure it will be like this for some time to come. Balancing or rather sometimes it feels more like a juggling act. Bringing Zoey out into the world, running errands, picking up the boys, stuff like that, becomes therapy in and of itself. It lends opportunity for her and I to talk about things she is surrounded by. Trees, the sky, people... and especially other children. These are everyday life learning experiences that present themselves each time we venture out. Things that traditional therapy can't duplicate. So I am trying to do that more. This upcoming week my posts will hopefully hold info on another family that I have fallen in love with that is adopting , as well as the Buddy Walk stuff. Ours walk is on November the 2nd and team "Little Wonders" has raised $2,840 so far.We are super excited. Zoey and her little friend Annika are the team captains. Annika is her NICU buddy and we are thrilled to be teaming up together for the second year in a row. Six more days of October. I really tried to post interesting, helpful and more importantly, inspiring things here this month. I hope I enlightened some, answered questions for others or mainly was able to just show the beauty and grace that can surround your life, envelop it really, when you open your heart to these incredible people ...... incredible people, who just happen to have Down syndrome. If just one person has been changed, touched or moved in anyway, then possibly I have accomplished what I wholeheartedly and humbly set out to do in the first place. Hopefully that's the case. (As always, pause the blog music first at the bottom of the page)

Lessons Along The Way .....

A few months back I was at the park with the boys and Zoey.It was a weekend and Mark was working.We ventured out to enjoy the day and the park was the boys destination of choice.I have to tell you, that that visit was the last time I was at the park.Yep,about two months ago.I know,kind of unusual for a mom of six.Well, of course the girls have long out grown the park but when they were young,the park was a daily outing.Daily,unless weather didn't permit.But with the boys and Zoey,things are different.The park and I don't exactly jive.I feel out of place and uncomfortable.Hard to say why for certain but you could probably guess.Definitely a personal hang up.Unable to push myself out of the house and place myself in a position to analyze stares and glances,to avoid the questions or actually the lack there of,to yield to the paranoia that everyone is looking at me with pity,the mom with the Down syndrome child.Most is imagined but some,some is very real.On this day ,as I watched the boys climb the playground equipment and master the monkey bars,Zoey and I stood on the sidelines watching.I, trying to avoid eye contact with other parents, with the hope that I could also avoid a tinge of sadness as I watched other children,Zoey's age,giggling with glee as they independently flung themselves down the slide.As I stood back, a dad stood adjacent to me watching his daughter and son run circles around the make shift bouncy track.We began talking.He was really kind and soft spoken,very interested,in not a just trying to be polite way, when we spoke.We talked about his children and of mine.He said he had a another little guy who was home with his wife.We talked.It was painful and a slight bit awkward for me.I let go of some of my defensiveness and actually began enjoying the conversation with another parent.Something I don't often get.Before long,his wife arrived with their little one.I introduced myself and as part of my social "issues", began a nonstop flow of incessant words and information that I really, truly thought, left this sweet girl shell shocked.Hardly got a word in edge wise,poor thing.She told me she had a very good friend from a near by town that was adopting a little boy through Reece's Rainbow.She wondered if she could forward my blog to her.I of course said that was more than alright and offered myself up if her friend had any questions.Not that I am an expert on Down syndrome but I suppose I have learned a thing or two over the last 2 years.What I was so touched by was that her friend had 4 children, under the age of eight, all "typical" children and that her friend and her husband felt called to adopt a child with special needs.I thought,how cool is that.I would venture to say that the greatest percentage of families who adopt a child with Down syndrome ,already have a biological child who also has Down syndrome.That through the beauty of their child's birth they have seen the great joy that comes with raising these incredible kids.That someone consciously decides to adopt a child,who they know will have challenges of various degrees and levels,well,I think that it speaks volumes as to the character and heart of those people.Well,this mom from the park and I parted ways.I was certain that she left thinking I was a total wack job and I convinced myself that the park, is probably not for me.We headed home and within the week I heard from her friend Alison.I could go detail by detail on the path this friendship has taken in a short time but I suppose I should sum it up the best I can and try and do justice to this beautiful family.Mike and Alison have done a selfless and amazing thing when they said yes to that inner voice,to pursue adoption.In Alison's own words,"We knew before we were married that we would adopt- a child w/ special needs was what we hoped for. Tate is that reality for us. We would jump through fire for any of our children. This trip (although extremely challenging) is all part of the process. We are thankful that God has given us this opportunity. It is really exciting to be a part of His plan and to watch it unfold."Says it all.As I close, I would like to share with you one of the many lessons I have learned through this new friendship with this incredible family.It is this:Perhaps I should venture to the park more often.Maybe I should open my eyes to the lessons and the gifts that lie within a simple place, such as a playground.If I continue to let,what amounts to fear,dictate my action on a daily basis,then I run the risk of missing out on some life changing experiences.Some life changing people.I also run the risk of not allowing others to see the beauty and grace of a child that has so many things to teach this world.I run the risk of missing important moments of my journey.Thank you for allowing my family to be part of your families journey,McKay crew.We feel privileged to be tagging along.So without further adieu, pause the blog music below and ....... I give you Tate:

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

As the sun sets and a long, seemingly never ending day begins it's very own descent, I look so forward to winding down and closing off the world that lies beyond our front door. As soon as that sky takes on that familiar hue and I have corralled the boys inside, something that requires an out of reach dead bolt strategically placed high on the door frame, our nighttime routine ensues. Joe tries to make like Houdini and climb on a chair with precariously piled pillows to escape for one more go around the neighborhood. Much to his dismay, he is seldom successful. After a valiant fight he usually caves and stomps upstairs to join his every so obedient brother, who is well under way with his shower. So it goes, most every single night. Zoey by this time is fat and happy with a full tummy, waiting patiently for momma to swoop her up and carry her off to bed. Mark is very seldom home for dinner, showers and bedtime reading. He wishes he were. We wish he was. Bedtime however, has primarily always been my deal. The kids have more than adjusted to this being a solo gig of mine but are thrilled when the occasional night presents itself and Mark can put them to bed. Bedtime has always been my favorite time of day. No matter what the day has held we can all take a deep breath and lose ourselves in our bedtime routine. Retelling events of the day, sometimes making amends, attached with the hope that tomorrow will yield a more pleasing outcome. And then there are books. I know I have mentioned before of the older girls and their love of shutting down with their surpluses of books. It is by far, was one of my most cherished time with them. Well, the "second" generation of book lovers has been born. Even Joe, who's perpetual motion is not always conducive to focus and concentration. Not the case with books. He loves to be read to. It actually is the optimum way of helping him to shut down that ever spinning mind of his and shaking out the sensory over load of his day. Before the boys and I retreat to their room I first settle in the princess. Zoey has learned to anticipate her own night time ritual as well. The moment we start up the steps, her head is down and nuzzled into my shoulder. She knows where we are heading. She used to fling herself back, her way of saying, no, please, not bed, but not any more. I think she looks forward to going to bed after a long day. Even her tiny body has learned to take the cues of fatigue. We enter my room, her room too, actually, and make the rounds to close the shutters. Her tiny hand outstretched to help me close them. We then head to the corner to get comfy in a chair and she then peers ever so slightly over the side, looking for her books. Her very favorite, "Time For Bed." She so loves that book. Her hands flip the pages feverishly and as I do my little "parts," she anticipates those coming as well. "It's time for bed little foal, little foal, I'll whisper a secret but don't tell a soul" She knows with those words, that I will be pressing my lips ever so close to her ear, finishing the sentence, upon which she shrugs up her shoulders and lets out the faintest of giggles. The rest of the book is much the same. I sit with her curled up in my lap and we finish our last book. We cross the room to her crib, where we turn on her music. We exchange our kisses and I lay her down and she always, always gives me one last tender smile. I sign "I love you" to her and head out the door. Another day comes to a close. Tonight as I left her room, I left with this sense of peace. The knowledge that I do not in fact know what tomorrow will bring but for right now, this very moment, Zoey is good. More than good. My version of good may differ slightly or more likely vastly, from the majority of other mom's of almost 20 month olds. However, I can unequivocally say, I would not trade my "good" for any of their "goods." Not now, not ever. Pretty bold statement I know, but one I say with complete conviction. Deep down I know there will be other obstacles for Zoey to overcome. Not just the obvious ones either, like sitting, walking and talking. Those pale in comparison to others that possibly loom on the horizon. I know her obstacles hold far greater consequence than most but as I see it, we all, no matter what the circumstances, will bare burdens and obstacles of some sort, at some point in our lives. Zoey's have just come far earlier than most. Recently our priest said something that has really stuck with me and that was this: we all will have our time at the foot of the cross. Different situations, same heartaches. None of us are immune to it. Price we pay for being human. However unfair, however difficult that time is that we spend at that cross, it will often be up to us as to when we allow ourselves to move forward and press beyond. Make our peace with it. Tonight I was reminded also, as I left her room, of how very much the same Zoey is to my other children. Or rather how much the same, I am raising her. I always talk to her with the absolute unwavering belief that she understands my every word. I read to her with that same unwavering belief that she follows those books and follows those pictures and that she will follow in the foot steps of her 5 brothers and sisters and fall in love with books also. I think she already has. The door is closed, the shutters shut, 4 out of the 6 are safely and soundly tucked into their beds and I embrace my sense of peace. My acceptance of the here and now. With humble gratitude I end my very own day and I thank this tiny child of mine, for bestowing the gift of perspective on me each and every day.

"What I wanted most for my daughter was that she be able to soar confidently in her own sky, wherever that may be." Helen Claes

Alrighty then. Mini sabbatical over. I have been advised by Caitlin's boyfriend Danny, aka Dream Boat, that I have been slacking. I wouldn't call it slacking exactly. No excuse really. Multitude of things. Mentally exhausted for one. Physically exhausted for sure. Hectic as all get up around here, definitely. I could post the latest happenings in detail but I will spare you. Probably the high point was the pumpkin patch in search of our Great Pumpkin. Love that Charlie Brown classic holiday show. Linnus, the eternal optimist. As I have mentioned before, Mark and I are from Upstate New York. In fact Jessica and Caitlin were both born there. I miss this time of year and I must say again, that most California pumpkin patches pale in comparison to ones in New York. We found one we loved here and went there for years but the owners of the farm sold and no one reestablished it as a pumpkin patch. It was the closest to authentic that we had ever found. So the quest for a new on began. We found a little farm with a small fresh produce stand, animals and haystacks. Very small but quaint. No cider, no fresh homemade donuts, no candied apples and no hay rides. I gave up the dream of finding the ideal. This year we headed to a new spot. "Autumn Festival," it was haled. So we enter the parking lot. Packed. The one time I wished we had that handicapped placard. We have about an hour and a half to mosey around. Plenty of time. Then we find out .... 10 bucks a head. Are you kidding me? Plus the cost of pumpkins. No way. I am not a cheap skate but that is ridiculous. So, crazy, what were you possibly thinking, we head out. Well, the freak out session that ensued from the back seat was one to be rivaled by no other. The boys kept it up for almost an hour. At one point I was laughing. Only thing I could do. The things that Jake was coming up with were classic. Joe would just follow suit. Finally, after some serious bribing, which is not beneath me, they settled down. We headed out to the good old stand by pumpkin patch and we all were happy as clams. Mostly me. If I had to spend a mere 10 minutes in the other "Pumpkin Disneyland," I would have lost what is left of my mind. Pumpkins were found, Jake's quest of finding his "perfect pumpkin" was a success and another year of this family tradition was deemed successful. However, it felt so wrong with out the other girls. I feel incomplete without them sometimes. Especially missing them at these moments. Taking pictures with them absent, is strange. In fact Jessica asked me if they all had to come back with the little ones and take Christmas pictures for cards when they were married with their own children. My reply .... absolutely. Speaking of my girls. I have no words, which for me is uncharacteristic, to articulate my feelings as I read their posts for the first time. Or for each time I have reread them since. I am awestruck by their maturity, their wisdom and the beauty by which they are living their lives and the grace by which they are flying, soaring in fact. I wanted to take a few moments and share with you a few other things about my older loves. First Caitlin. That girl amazes me each and every day. She is living on her own in San Diego. Basically supporting herself solely on her own. Working 38 hours a week and going to school taking 16 units. A heavy load she carries and without complaint. She calls each and everyday enthused about her life. Loving it all. Her job is one that I would find it hard pressed for many adults far older than her to want, let alone do it with the passion that she does it with. Caitlin is a direct service aid for adults with disabilities. She works for Community Catalysts of California and in the short time she has been there, she has already recieved a promotion. Although she cannot tell me a great deal about her clients because of the privacy factor, I do know this much. She works, for instance, with clients with severe Cerebral Palsy. In wheel chairs, totally dependant on others for their day to day care. Anything from bathing and dressing to errand running. Which requires Caitlin to drive them,help them in and out of the vehicle, lift wheel chairs in and out of her car and she does this, all 5'2" 110 pounds of her. She does this because she feels called to it and looks forward to continuing her education as well as her career in this field. Pretty amazing. Taylor has a fairly rigorous senior year course load. As well is the President of Panther Pals at her school which is a club who's vision is to bridge the gap in friendships between the typical students and those enrolled in the special education classes. Taylor works 16 hours a week and is volunteering at a place called "Ride On" which is horse therapy for children and adults with various levels of disabilities. She also is planning on majoring in Special Education when she heads to college next year. Jessica, child number one is next up on posting. She has been so inundated with her hectic life and hasn't had a moment to post. She promises this week some time. I have so many things to share with you about this oldest child of mine but I'll sing her accolades later, after she posts. So yeah, those are my girls. Hard to believe sometimes that they are mine. I want to also thank my dear friend Kele, mom to that sweet, sweet Presley for saying such wonderful things about my girls and all the rest of us. She is my far away friend that lends so much to my life by deed and action and unconditional acceptance.Thank you Giles family for the gift of your friendship. That is the long and short of the last few days with a whole bunch more interspersed along the way. Little Princess is doing great. Feeling so much better. She is putting up quite the fuss with eating her solids so I am having to supplement her with some extra g-tube feeds. I am not sure what's up with that. Zoey continues to work hard in therapy. Her vision therapist thinks it's time to head back to the eye doctor. Her left eye is more "floaty" than usual. Her stroke has weakened the muscle as well as caused her to lose vision, which we already knew. Hence the vision therapist. Probably is time for glasses and a patch for her "good" eye ,the right one. Although she has some mild vision loss in that one as well. Zoey Grace will NOT like glasses. As it is she will not even tolerate hats of any kind and she barely tolerates a hair twisty. And forget about having eye drops in her eyes, washing her face or anything involving her head. So that will be interesting. But how darn cute will she look in glasses .... that is if she keeps them on. That's all for now. Tomorrow I will be posting about some friends from near by Ventura. They are in the Ukraine, right now, on their first trip of two, beginning the somewhat complicated process of adopting their little boy Tate through Reese's Rainbow. They are an amazing family that I cannot wait to tell you about, but for now may I ask you to pray for Alison and Mike and their four little ones, who are stateside and for little Tate, who is patiently awaiting his forever mommy and daddy.

Through Rose Colored Glasses (by Caitlin - Zoey's other Big Sister)

My mother is as blind as a bat. She literally could not function without her contacts or her glasses on. I've seen some pictures of her in her childhood, and let me tell you, she wore some nice thick glasses. My dad, pretty much the same thing. He has recently bought a pair of reading glasses (from what I understand, this is some type of rite of passage in middle to late adulthood). Jessica has worn glasses since 5th grade I believe, and she too cannot see a thing without glasses or contacts. Taylor, perfect vision. Jake and Joe, we have yet to find out.

Then there's me.

I have 20/20 vision. Nothing medically wrong with my sight. But as of the last year and a half, I have begun "wearing" a type of glasses. I guess you could say that they are rose colored glasses. And guess who picked out these extraordinary glasses especially for me? ...you guessed it, The Princess herself, Zoey.

Typically, the phrase "through rose colored glasses" is something that carries a negative connotation: ignorance, someone not in touch with reality, feigned optimism, perhaps even foolishness. But is this really so? Or is looking through glasses tinted with a twinge of pink actually a gift of sorts?

I would support the latter.

Since the birth of my littlest sister, things have been on an upswing for me. Zoey came into our life, and my life particularly, at a time of grayness, and by gray I mean that I was going through the motions of life, skating by, taking all for granted. Then, in a quite rude awakening, I was faced with the stark contrast of all that is worthwhile and meaningful and all that is void and purposeless.

Underneath a tangle of tubes and wires, a ferocious spirit battled without even making the conscious choice to do so. This small warrior was giving me a run for my money in the courage zone; I found it so much easier to remain apathetic in so many areas of my life, rushing around, trying to do what was best for only myself. But everything changed that day. It was as if she came into the world and wordlessly told me, "Slow down. Stop and look around for a minute."

So I did.

I had a hard time seeing. Everything was blurry, and most of all, everything was gray. There was no black and white. In a short amount of time, I realized that I might need some corrective lenses...and that's when Zoey handed me a pair of rose colored frames.

My new glasses felt a little funny. I'd never really worn them before and wasn't even sure they fit correctly, but I gave them a shot. Everything seemed a little brighter, a little more vibrant, but I still wasn't sure. Was I really cut out to wear glasses? I thought I was seeing things just fine before.

After a bit, everything took on color, even Zoey after her heart surgery. The senseless seemed more manageable and faith overtook doubt. Gray did not intrude on living, instead, joy shined through whenever I wore my glasses. Sure, there were times I chose to take them off. There were times I threw them across the room, there were even times I contemplated stepping on them. But each time, Zoey kept going, so I did too.

But how did such a little baby know about these glasses? How did she know to give them to me. The amazing thing is, Zoey has a pair of rose colored glasses herself.

She was born wearing them.

The blueprints for her glasses were located on her third 21st chromosome, and they genetically formed right into her very being. Within her genetic makeup, she contains the secret to living a beautiful life: optimism, perseverance, and joy. She does not choose these traits, they are in every cell in her body. She exudes beauty and faithfulness because this is her nature. Zoey's rose colored glasses are not a mark of her ignorance or her foolishness, they are a symbol of her ability to strive in an unfair world. And she didn't have to buy these glasses, shop around for them, or try them on for size, they just came perfectly tailor made for her.

I figured, 'If she can wear these all the time, so can I." So I do. Or at least I try. Some might say they look silly or are impractical, but they are working out perfectly for me. And ultimately, I don't have a choice whether or not I wear them. I owe it to Zoey Grace to never take them off.

Zoey did not choose Down syndrome for herself, nor did she choose any of the battles that she has encountered in her existence. This is beyond human control. I wish I could take on some of her suffering, but unfortunately, unfairly, I cannot.

What I can do is to everyday choose optimism. I can choose my attitude. I can choose to pray. I can rejoice in the peace of Christ and in the unimaginable promise that both my life and Zoey's life hold. I can choose to embrace this emphemeral life for all it's worth.

And from my point of view, life is looking pretty rosy these days.

Zoey's Big Sister Taylor Here :)

Hi, Zoey’s big sister Taylor here ☺

Oh, Miss Zoey Grace…
I look at her as perfectly imperfect. Not imperfect ... but you know what I mean. Perfectly imperfect and she just happens to have Down syndrome. That doesn’t make her any less beautiful, or any less important. In fact it makes here MORE beautiful, MORE important. More loving, more caring, more compassionate, more innocent than any of us will ever be. When I look into her eyes, at her smiling face, I don’t see Down syndrome. I only see a happy, loving child.
To know that anyone, let alone 85-90% of people who find out they are having a baby with Down syndrome abort, is unfathomable to me. To know that in other countries, such as Russia, children born with Down syndrome are institutionalized after just 4 years of life, is unfathomable to me. To know that people will look at Zoey, or look at anyone with a disability and judge, is unfathomable to me. Quite frankly, none of those people know what they are missing. I feel sorry for them, because they will never be blessed to experience the love of one of these children.
So, as all of you know already, October is the month to “Get it Down” and learn more about Down syndrome (actually I’m quite proud of this, since my birthday is in October☺). So what is there to say about my little Zo-Muffin who has been blessed with Down Syndrome? That’s right, blessed. Actually, the better question is, what is there not to say? There are so many reasons I am inspired by this girl. And isn’t that amazing if you think about it? That a 1 ½ year old little darling, has inspired me more that any peers or adults I’ve met in my 17 years of life? That really says something. I guess the word for it is, grateful. So very grateful. Yeah, we all could’ve done without the medical issues. But I can confidently say that each person who has come into contact with Zoey, has been touched, whether by a wave a church, a smile at the park, or by one of her lovely wet ‘n slobbery kisses. She has touched more people in her little time here on earth that most of us will EVER hope to. In my eyes, that is just absolutely amazing.
Alright, here’s a little story. There’s a boy at our church named Christopher. He’s 17 and happens to have Down syndrome. One day after church his parents told us a story. They were away for their anniversary before Christopher was born, in fact, before she was even pregnant with Christopher. They were in a store and were walking around separately, doing their own thing. After a few minutes, they walked back to each other. The mom said, “Oh I just saw the cutest little Down Syndrome boy!” Her husband looked at her and said, “That’s so funny, I saw him too and was just about to tell you the same thing.” They both felt such a pull towards this little boy. And soon after that, she became pregnant with Christopher. I love this story, because I think it speaks so much to what people with Down syndrome, of any age, bring to this world. Christopher’s parents felt a connection to that little boy for a reason. There was something special about him. People with Down syndrome radiate joy and they give a special, one of a kind type of love.
Personally, I couldn’t even begin to tell you all how Zoey has specifically changed my life, my way of thinking, and my way of viewing the world. She has showed me what real strength is. More importantly, she has shown me what real love is. If I’m ever upset, or I’m having a bad day, I can walk over to her and she’ll flash me one of those, one of a kind smiles and I can take a deep breath and say, ok, things aren’t really that bad are they? They can’t be, if she’s over there with that big smile. As Zoey continues to grow older, I can only imagine what she will accomplish. My sisters and I have always said, “You know what Mom? If Zoey never talks or does other things, she can just sit there and smile and we’ll all be content.” And you know, that’s really true. Maybe she won’t walk, maybe she won’t talk for a while. But what will she know how to do? She will know how to smile. And, she will know, better than any of us, how to love. What else could anyone really ask for…

"Everytime you smile at someone, it is an action of love, a gift to that person, a beautiful thing." Mother Teresa

Oh Miss Zoey ... your on your way back. Her smile has returned and can I tell you, this child and her smile, is so enough for me. Her smile lights up our lives and lets us know all we need to know ....... she is happy and she loves us. And that ...... is a beautiful thing. Now, to this video. I found this through an incredible blog, who in turn linked it from another blog call "Mosaic Moments". I wanted to share with you first, something that I found so intriguing, when Zoey was born. Did you know there is something called mosaic Down syndrome? Different from Down syndrome? No? Neither did I. Mosaic Down syndrome is unique in the fact that, instead of having an additional copy of the 21 chromosome attached to every cell in the body, aka Trisomy 21, there is only a certain percentage that have an extra copy. This type accounts for only 2-4 % of Down syndrome cases. Fasinating, I think. Well, anyway, this darling child in the video, Joe, has neither "traditional" Down syndrome or mosaic Down syndrome. Joe has yet another rare typing. From my understanding, he is literally, one of a kind. Amazing child he is for certain. I know, I know .... I have said it before when I have posted a video that will take more then a couple minutes but, it really, truly this is worth the 6+ minutes. Come on Kele ..... I know you can do it! (remember ..... pause the blog music at the bottom of the page)

"Turn your face to the sun and the shadows fall behind you" Maori Proverb

Today was not exactly mellow like I was looking for but it was a tad bit more relaxed then the last few have been. I ended up cancelling Zoey's PT this morning. I wanted to give her another day of rest. So rest she did. I managed to decorate for Halloween. I love Halloween. One of my favorite holidays. Only thing missing is my East Coast upbringing of pumpkin patches with cider mills. Fresh pressed cider, homemade donuts, candied apples, the works. I have looked long and hard for a replacement to fill the void but nothing has quite filled the bill. I did find my childhood stomp in Endicott has a web page. I got all excited thinking they shipped but ...they haven't yet brought themselves up to the year 2008. Remember, I am a small town girl at heart. One day I might stumble upon a mill that measures up. At least a girl can dream. I am a little late getting decorations out. Otherwise occupied is my excuse. Honestly, also, I am having a little blog burn out. Struggling as I sit down each night. So I apologize for the lack luster post. Not one of my best tonight, sorry. Many of you may have noticed the link I have on my side bar to the book "Gifts." It's an amazing book and a must have for any family who has welcomed a child with Down syndrome into their lives. I was given this book fairly late into our journey with Zoey. Not at the beginning but actually what turned out to be the absolute perfect time. A time when I needed to connect with other's, hear their stories and be reminded of that incredible bond that we share as mother's to children who have Down syndrome. Our stories may vary on certain levels but in the end they are joined by an indisputable common thread. What I had no idea about,not until today, was that there is a whole site about the book "Gift's,"about the upcoming "Gift's" volume two, about it's authors, links to important outreach sites and so much more. The other thing it has, which I was wowed at was, a complete blogroll of children and families traveling this common road. How great is that? You just click on and there they are, updates by the minute to their sites. The instant opportunity to find others when you might need it most. What a blessing to new mothers, fathers and families just starting out on this path, maybe feeling alone and scared and right at their finger tips, the chance to connect. That is a beautiful thing. So now, how is the little princess? Well, maybe I saw a glimmer of my happy and healthy Zoey today or at least a twinkle...She seemed to perk up a bit at the end of the evening. Full of smiles. Doing "so big."Snuggling up to us. My hope is that she is on the up swing. My only concern is a VERY distended belly. It is not hard but rather soft,which is a good thing but wowza, she looks like she has swallowed a watermelon. Her little Mickey Button which usually sits nicely under rib cage, was instead raised WAY high over her rib cage. This happened once before, about a year ago. Necessitated a trip to the ER. Diagnosis: Ileus of unknown origin. Just to give you another visual. You can literally see the loops of her intestines through her belly. She is not uncomfortable and I just hope by morning things have well, deflated. Or else... you know where we will be heading. The last item is the picture of Zoey. Did you notice her legs? Those are Baby Legs. I saw them on a little one months ago. I filed it away as a must have but forgot about them. That is until I went and checked in on my boyfriend. There he was, looking so darn cute wearing some hip Baby Legs. So online I went and ordered some up. Beside being cute they are practical for Zoey. Having a g-tube, we have found that onesies are her outfit of choice. We double her up with a plain white onesie and then another "shirt type" one on top. Easy access to her tube and most important keeps her away from the g-tube that she tries to grab. Onesies also protect her button from getting snagged and caught on things. Baby Legs will keep her legs warm, especially when she rolls from the carpet to the tile, which she loves to do. So as I put these on her today I had a flashback to the movie "Flashdance" and found myself singing the song "Maniac." If you're as old as I am, you know what I'm talking about. What can I say. Well, this old lady is heading to bed. Life is catching up to me. And who knows what tomorrow might have in store for me.

"I know not what the future holds, but know who holds the future." anonymous

Has it seriously only been a week since this latest semi-crisis began? How is it possible that a mere seven days can seem like a lifetime? So many of my days, weeks and years are measured in speed. Be it lightning fast or painlessly slow. The desire to catch a glimpse of the future or return to the past often overpowers the gift of just being present in today. Today was a prime example of all of the above. As we headed to the hospital this morning for Zoey's blood redraw, I yearned to gaze into that crystal ball and know for certain that everything would be alright. I yearned to return to a time when life didn't seem so ..... heavy. Either one of those departures from the here and now would most certainly rob me of the magical moments of today. And interspersed throughout the craziness of today, there were magical, irreplaceable moments. Moments, mostly simple ones,that would have been missed had I had a choice and actually chosen, to fast forward past these difficult days or return to days gone by. These moments have and will continue to mold and shape us all, in ways we have yet to even comprehend.Even the inexplicably sad moments will be imprinted on our hearts and transform us .Today as I watched my little love cry and scream, as she was poked and prodded once again, I wished to take it all from her and told her just so, on many occasions. Today as I paced the house waiting for results, I so wanted to wish this day away. But if I have learned one thing on this journey the last 2 years, it is that through the adversity, emerges the realization that no matter the strides you have made in strength and faith, there is always room for more.And ... you cannot change the course of the moments, no matter how much you will it to be. One would have thought that you had been forced to dig so deep in the strength and faith departments, that the idea that there was room for more growth, seems inconceivable. But ..... I was in fact disappointed in myself, that I wavered in both areas today. Unable to let go and know once again, I am not in control.Realizing, that nothing can prepare you for that, which you are unprepared to hear. At one point, as the test results were taking two hours longer then they were suppose to, I was literally searching the house for Xanax left over from when Zoey was first born. Something to take the edge off and calm my nerves. I felt sick to my stomach. I was snapping at everyone and I was NOT thinking logically. Seeing I was teetering on just this side of sanity, Mark called the lab directly.They had just faxed the results to our doctors office but ... the office was closed from 12-2 for lunch. Mark asked the tech for results but she said if she gave him the results, she could lose her job. Hard to believe you can't have access to your own child's results when you want them. You often are left feeling like a second and third wheel in the care of a child you have seen through one medical crisis after another and still, you become an observer and a side line participant. Instead she and Mark played the guessing game. No joke. Mark gave her the numbers from the last time and she would say higher or lower. I am not kidding. This is how we came upon the initial VERY unofficial results and momentarily restored my piece of mind. The day was way too detailed and way too busy and it is way too late to try and retell the entire chain of events so I'll get to the meat of it. We went to Zoey's doctors in the afternoon and went over all areas of concern over the last week that he had been gone. First the blood work: White count went up to a normal range and platelets went up but still below normal. She is heading in the right direction though. She had some immature cells present but they were not the type, blasts to be exact, to indicate a Leukemia "trend"or precursor. These, as per the pathologists,perhaps indicating that her bone marrow was rebounding from some type of immune suppression virus.It still could have been a reaction to her vaccines, specifically the MMR. We probably won't ever know. We redid the urine catheter also and are planning to gather more tests to look into her little urinary tract system. Early in her life it was mentioned that she had one smaller than normal kidney and at the time it took a back seat but now is the time to revisit it. Zoey is still so tired. She ended up sleeping 14 hours last night and took a nap today in between all her stuff and was asleep by 7pm. I laid her down in her crib, went and got her jammies and I kid you not, she was asleep in under 2 minutes when I returned. I am once again exhausted. I started to post at like 9:30 and got side tracked and am now just finishing at 12:15 am. We are going to attempt therapy in the morning and try and get her back on track after a lost week. Thank you again for all the calls, emails and check ins. And of course the prayers. What a trooper my little Zoey is. I am so proud of this child. She continues to amaze me with her tolerance, resiliency, determination and strength. One tough girl, my littlest love. Keep the prayers coming. Please.

Well, Well, Well, look what the cat dragged in ......

....... a urinary tract infection. No, not me .... Miss Zoey. How's that for a bummer? Last Wednesday, when this whole fiasco started, the first thing they did at the pediatrician's office was a catheter clean catch urine sample. Not a pleasant procedure for anyone, let alone a unsuspecting, smiling 19 month old but it's the best way to ensure no outside contamination and thus, accurate findings. So, the urine looked clear, the pediatrician filling in for our regular one did not check for little uglies under the microscope and instead sent it out to see if anything grew. I honestly forgot about the whole thing because I was so side tracked with her blood results until our doctor called this morning. Seemed like an awful long time for results to get back to him. Sounded more like the results sat on his desk since Friday morning since he was gone. None to happy about that but what can I do now? We started her on an antibiotic. Hopefully things will clear up quickly. Tomorrow we are off first thing, to the hospital, for follow up blood work. Got to say, slightly uneasy about heading there. Results will be back within an hour, so it's not as if we have to sit around and wait and wait and wait. Which is a good thing because patience is not my strong suit lately. Her pediatrician also wants to do another catheter on Wednesday so he can send out a more complete urinary work up and maybe figure out if there is anything going on in that department. Seriously, if I have to add ur-OLOGY to her other OLOGIES, I might just have a heart attack. Today was a really rough day for the little love. Not herself at all. Faked us out with lots of smiles when she first woke up and then I guess that was her quota for the day. Unhappy during vision therapy, which is very unlike her. Proceeded to fling each and every toy placed in front of her, directly behind her or straight over the side of her chair. Finally she was somewhat interested in mardi-gras beads and gaudy sequined fabric but other than that ..... the hour was fairly unproductive. Took a rather short nap which didn't bode well for the cranky disposition. And to finish up the day ..... cried throughout O.T. Well, not throughout because it was a very abbreviated session. She has never, ever done that. Ever. I held her for a long, long time on the couch and so unlike Zoey .... she fell asleep on my chest at 5pm. I carried her upstairs, laid her down, clothes and all. Still sound asleep, 4 hours later. I even went up about a half hour ago and inched down her little leggings, unsnapped a double layer of onesies, g-tubed 4 ounces and all her meds and she didn't move a muscle. My little princess is whooped. As for the very odd post picture..... a video monitor. We bought it last night and honestly, why in the world we hadn't thought to get one before now is beyond me. The catalyst was this. As I have mentioned before, Zoey is a very, very silent child. Hardly a sound all day long. Yes, she cries but even that is seldom. As for sounds, none to speak of, no pun intended. I cannot even put it into a category of a speech issue because Zoey has no sound, period. Am I concerned. No. Least of my worries at this point. However, when I put her down for a nap I truly have no idea when she wakes up. She could, conceivably be up for awhile but only if she cries will I know she is awake. I have felt so bad lately when I either go to check on her and I wake her by going in or when I go to check on her and she is wide awake, stuffed dolls and things strewn all around the crib but I have heard not one peep from the monitor .Now I can see her perfectly. Can you see my little love too? We even can hook it up to the television and see it full screen. It is very cool and well worth the investment. I just wish we had done it sooner. Well, that's the Monday wrap up. Today was a very strange day all around. Even the weather. Santa Ana winds are horrible and if you live in Southern California, you know what I am talking about. Nasty winds. Allergy and asthma sufferers do not do well during this weather. Kids are better kept indoors. To top it off, the winds bring fires, we've got two major ones going right now and it's only a matter of time before the pyromaniac wackos come out of the wood work and deliberately start more. In fact, Jessica might very well be evacuated late tonight as one of the fires creeps closer towards her. So, yeah, we got that going for us. Never a dull moment around here. I could use mellow. Mellow would be nice. If anyone has any ideas how I might be able to accomplish mellow...
feel free to chime in.

"We cannot direct the wind but we can adjust the sails" -author unknown

The events of the last week have left me slightly frazzled and completely off kilter. At the very least, I certainly have dropped the ball with my blogging daily for awareness for Down syndrome. I had grandiose plans of posting pertinent facts, engrossing news articles, relevant stories and priceless videos but in the end, I suppose this, Zoey's life, fits the bill, in and of itself. In fairness though, Zoey's story is not typical. Most Down syndrome children do not come in to this world hit quite as hard. Some do. Most do not. Between 40-50% of children born with Down syndrome will be born with some type of heart defect. Within that group there is a wide range of severity. Some defects, like small ASD's and VSD's will resolve themselves and other defects, larger ASD's and VSD's, tetralogy of fallot and AV Canal, such as Zoey's, require surgery. Blood issues such as Zoey had, TMD, is only found in about 10% of children born with Down syndrome. As I stated in my earlier post, there is the increased risk of Leukemia in children born with Down syndrome but I must also add that children with Down syndrome are, from a medical stand point, treated differently and respond much better than a typical child diagnosed with same illness. It is a double edge sword really. Their genetic makeup leaves them pre-disposed to the disease but that same genetic makeup lends itself to a better remission rate and cure. That is why researchers are working diligently to find the link within the Down syndrome population so they might find a cure across the board for all children and people facing a Leukemia diagnosis. As for Zoey's stroke. About 4,ooo children per year suffer in utero strokes. A statistic outside the Down syndrome population. We will never know for certain the cause of Zoey's stroke but it is assumed that the combination of her heart defect and major blood disorder, coupled by the fact she was lying transverse inside me, were all contributing factors. When Zoey was born the entire right side of her neck was swollen .... like huge. Like scary huge. When they performed scans of her head and neck, they found the clot still in her carotid artery. It remains there to this day. We have been told that it poses no risk to her and the clot has just become one with the surrounding arteries and vessels. As for seizures. Seizures are present in about 5- 10% of the Down syndrome population as well. The cause, unknown. In Zoey's case she did develop the rare form of Infantile Spasms but we now know that most likely her seizures are not exclusively related to having Down syndrome but rather also the brain damage that occurred due to her stroke. All of Zoey's issues do circle back to the fact she has Down syndrome. If she didn't have Down syndrome she would not have had her blood disorder or her type of heart defect and then she would not have had a stroke and then ...well you get the idea. It all trickled from the same root cause. One thing we are often asked is do we know how "high functioning" she will be. The answer .... no. Nor did we know with our other children. They all came to us uniquely created by God and their lives and what is to become of it, their story, continues to unravel and waits to be told. Zoey is no different in that respect. In fact, we were more prepared with Zoey in some ways, then the other children. There are very definite, indisputable things we know about Down syndrome. We are fore armed on many levels, for things we may or may not face, more so then the other five. The day my other five children came blazing into my life, I gazed upon their precious newborn faces and it too was all a great mystery. As parents, we have no way of knowing, on that first day of their life, if things such as behavior issues, autism, various learning disabilities, potential diseases, drug and alcohol abuse or mental illness are going to be part of their journey. We all could not imagine on that first day, going to such dark places for their future. So why should I with Zoey? Yes, there are some knowns. For instance, the range of IQ for people with Down syndrome is some where between 20 and 85. With the average being 42. The overall learning ability is that of a 6 or 8 year old non Down syndrome child. Unfortunately the emphasis of the learning disabilities by society often over shadows the ABILITIES and TALENTS of people with Down syndrome. In Zoey's case, we must take into account a major heart defect, that left her oxygen fluctuating within her very tired body for 5 1/2 months. A major stroke that occluded appropriate blood flow to her brain and least we forget, Infantile Spasms. That complete picture, puts Zoey in a whole different category. But in the end who truly knows the path these children will forge. No one. Well, maybe One person. But us, their parents, all we know is that we love our children. Regardless. We face what ever comes our way, their way and we hit it head on. We pledge to them unconditional love and the promise to not abandon them. To encourage them to be the best they can be. To let them know the world is theirs for the taking as long as they go after it with patience, kindness, gratitude and love for their fellow man and God. At least that's my take on it. As much as Zoey's future seems so uncertain in many respects, I, believe it or not, feel more prepared then I do with the others. Beside which, I have my buddy for life. I have great hopes and dreams for her and I. I look forward to the amazing things that I know await us. Her gentle spirit and innocent wide eyed wonder is refreshing and most certainly inspiring, to us, her family. Here's one last fact I want to leave you with. Approximately 75% of babies with Trisomy 21 die in the embryonic and fetal stage. Zoey beat those odds too, didn't she? This child of mine continues to defy odds and show all of us, just how resilient she is. This week proved to be yet another bump in the road. The tide turns, ebbs and flows. The wind blows and we go with it. Zoey often dictating it's direction. She seems, to me, to be finding her way through the latest. She took another power nap yesterday, 4 hours. And again today, 3 hours. Tuesday we do another blood draw. Praying for a upward swing in her counts. I have to believe that this will be the case. I do worry about my littlest princess. What I wouldn't do to wish away her difficult days but alas I cannot. Instead, I hold her and love her and put aside therapy for the moment and guessing for the moment and surmising about the future, just for the moment and just be, my little buddy and I.

"Do not be afraid of tomorrow;for God is already there" author unknown

This post is again a two parter.I started it at about 10pm last night and as I was just finishing up ...... power outage.Yep,plunged into darkness.Entire little community and I have yet to find out today, why.All I know is I am DEFINITELY NOT prepared if we have an earthquake.First off.Our earthquake kit ,or rather garbage can filled with various earthquake items is well,at our other house ,in that garage.Not much good to us here.We found a small flashlight and turned on small book lights for nite lights.Lame but effective.One up side is that it forced me to get to bed at a fairly decent time .Well,I digress.Read on for part one, followed by a quick,quick for me,wrap up of Friday's events.Thanksgiving Day,I mean Taylors Birthday was absolutely delicious.Alright,I guess I must come clean.I didn't exactly eat any of it.The truth is .... I don't like Thanksgiving dinner.So I guess you could say that this was a true labor of love.I could honestly just as soon eat my favorite taco's and be just as satisfied.I know I will most likely get flack for that borderline blasphemy of this particular holiday celebration but pick on me me next month,when I do it all over again.I don't think I can handle the harassment tonight.I am exhausted.Spent the entire day in the kitchen.Prep,cook,clean,up.Solo job.And throw in the care of the little darlings into the mix and well,like I said....exhausted.Taylor did have a great day and that made it all worth while.Besides being completely physically spent, I am emotionally cooked as well.Miss Zoey continues to keep us guessing.She ended up sleeping 14 1/2 hours last night.A record.Even during her days fending off the battle of heart failure vs pulmonary hypertension,she never slept that long.She woke this morning, smiled a bit for us but still was looking off to me.She ate her cereal fairly well and her fever seemed slightly lower though,which were pluses.The hem/onc doctor called first thing.Not our regular one but the one we spoke to last night.He conferred with another specialist and it was agreed we could wait until Monday and head into clinic.No tall red flags waving frantically just a few cautionary ones for now.She did wake up with a strange rash also and while I was preparing for the feast,a light bulb went off.Zoey had her immunizations last week.MMR and chicken pox.I called the pediatrician who is still covering for my regular one and inquired as to whether this could be an explanation.Could she be having a strong reaction to either one?We spend so much time looking for the out of the ordinary when it comes to Zoey,that we often fail to see the possible simple ones right in front of us.Hard to tell was the doctors response.Worth a consideration however.I have kept my eye on the rash.No worse,no better.Baffled is what I am and a bit worried as well.I put her down for a nap at 1pm today and she slept until 5:15pm.Her little body is really fending off something.Or hopefully healing.Her regular pediatrician is back tomorrow so I will be glad for that.I will pop in and see him if I need to or maybe it will be just for a reassurance drop by for me.Who knows.But one thing I do know is that with Zoey ... you never know.She woke up finally. Ate again fairly well.Missed a feed or two today so I may give her a g-tube boost before I collapse into bed myself.I have this little nagging feeling that I can't quite shake.Unsettling really.I found myself doing that deep sighing throughout the day.Not sure of it's origin but knowing for certain I absolutely don't like the feeling ...... Part two.Friday morning found me draped over the kitchen island,mumbling incoherently to Mark something about ,"I can't take it any longer,I am maxed out and in need of serious help."Something to that effect.You get the gist.Mark left and I picked myself up,or rather off, and carried on.Managed to shower,clean,do laundry and bake cookies,as if I hadn't stood in the kitchen long enough yesterday.But these were the peanut butter ones with the Hershey kisses in the middle.Just what the doctor ordered and my own version of self medicating.But you didn't come to hear about the whining of a stressed out mother of six.I am fairly certain you want to hear about the little princess.Zoey seemed to, thankfully, turn a corner this evening.She flashed us some trade mark Zoey smiles and giggled for her daddy as he dangled her upside down.One of her favorite things to do.Her eyes seem still off a bit.Tired mostly but I see her little personality creeping back.The plan is for her to have a blood draw next week and see if some of her counts are recovering.Her rash is pretty much gone so ..... who knows.What I know for certain is logic would say,if things were on the down slide her tiny body would continue in the same direction.I am fairly comfortable with the game plan and have restrained myself from allowing my mind to get to far ahead of the here and now.She is in bed now.I hear her rustling around a bit.Kind of restless.Hopefully she will find a comfy position and settle into another peaceful nights sleep.Mark and the boys are sitting here watching "Nim's Island",very cute movie.I am doing my blog thing.My idea of cheap therapy.Works for me.My tummy is full.Mark was a love and stopped by Snapper Jack's and I got me that taco I was craving.So once again we thank God for His unwavering strength as we passed through another moment of uncertainty.A huge thank you to ALL of you for your comments and prayers.Your emails and phone calls.We are humbled by the out pouring of love and support.It never goes unnoticed and is deeply appreciated.The pictures: The birthday girl and boyfriend and of course Miss Zoey.She is so funny lately.Nine times out of ten,the minute you go to take her picture,she sees the flash and picture number one is the look we capture.Funny girl ...... you make us laugh and we love you so!Number two.... right before bed tonight ..... tired but still .... there is that smile.