Difference is an Artists game ....

I hardly have the words for this post so instead take the 4 min and 16 seconds to watch this video and it will speak for itself. I know we are all busy with life. Living it. Making our way through it. The 5 minutes this will take, is precious time in mosts people's hectic lives, however for those who choose to watch, I feel confident that you won't leave disappointed. You will leave moved. I promise. I found this on a blog that I am in complete awe of. It is one of those blogs that leaves you thinking and feeling and laughing and crying and smiling. It leaves you with the desire to revisit because you just know that your heart and mind will for sure be touched. Inspired in fact. So thanks Emily for the difference you make in my life through your advocacy and for the words that help guide me through my own journey. Help guide Zoey through her very own remarkable journey.

And remember, scroll down and pause my blog music FIRST before you hit play on the video.

Going,going almost gone .....

Summer.One more day left and then the hurrying and scurrying of a new school year will be upon us.I have never been one to be wishing the kids back to school. Trust me,we have had a day here or there where they have been at each others throats and I have thought."Is it time to go back to school yet?"But those times have been few and far between. There is however a really classic Staples commercial, with parents skipping down the aisles singing"It's the most wonderful time of the year"Cracks me up every time.But for me,over the past two summers especially, since Zoey has been born, I find myself actually wishing we all had MORE time together.That summer was just a tad bit longer. That we could linger here a short time more.Isn't that like most things in life?Isn't that the case with life in general? Wanting things to last a little while longer. At least the good stuff.Holding on just a little tighter.Knowing I must loosen my grasp but instead I find myself doing battle with my over powering desire to keep us close to one another.My over powering desire to watch over them and protect them and be part of their every moment. Afraid I will miss something. A moment. Selfish really because each and everyone of them has to go out there and find their way. Even to do their own battle on the school playground.A mini piece of the world. The good, the bad and the ugly. How they face what happens there, will help shape them for who they will become tomorrow and I cannot be there to over see it all. I would do them a huge disservice if I were.So off they go, 5 out of the 6.Senior in college down to developmental kindergarten.And then there's Zoey. She's in a category all her own! Am I all over the map in raising of children or what?Exhausting at times,both mentally and physically but there is no other place I would rather be.I vividly remember having a conversation with my dad during my senior year in high school. I was in such a state of confusion. What I was doing with my life?What I even WANTED to do with my life. After a little go around, my dad finally said,"What do you want to do with your life,be a wife and mother?"I paused and said,"Yeah ,maybe"I don't think it was actually the path he wanted for me ,especially right then but I did know, way back then,that that was what I wanted to do most with my life . Being a mother one day, was the only thing I was absolutely sure of. So here I am today. A wife and a mother. Doing the one thing I always knew I wanted to do. Not many people can say that, in this very moment,they are living the life they have always wanted.Always dreamed of. Now of course,as seen by Miss Zoey and her little life,I would change certain aspects. Her physical pain. Our emotional pain.My struggle with my faith. But changing that would change all this.So, no I would not have done it any differently.Not one moment do I take it for granted. God has blessed me in ways too vast to number. I am living a life that others may not ever be able to. I am always mindful and always grateful of that knowledge.Today we head to the beach. Our official last hurrah.I couldn't think of a better place to be.Carefree.Peaceful.Calm. All the things I have so yearned for over the last 18 months.I just love watching the boys giggle and laugh.Play in the ocean. Build sand castles.Dig for crabs.And Zoey. She just sticks her cute little chin up and feels that breeze on her face.Just enjoying everything around her.Taking it all in.The one thing that would make it perfect was if Mark and the other girls could go with us.Not to be. Not today.Another school year. Another chapter. So strange and so wonderful. Again I find myself raising three little ones.But also watching three big ones begin their own new chapters.Making new memories.Last night Taylor and I watched the movie "Rent".There is s a song from the movie with a line that just stuck in my head:"There's only us,there's only this,Forget regret or life is yours to miss.No other road.No other way.Only today."Some sound advice.Worthy of following.I continue to give it my best shot. Some days better than others.But at least I keep trying,does that count?

*Zoey had just woken up from her nap the other day. She looked so cute.She was being so flirty with Taylor and Taylors boyfriend Brandon in this picture. I love this one because she is sitting so straight!We don't often find her so upright!

Baby Gwendolyn

Awhile back I was sitting in church just glancing through the bulletin,waiting for church to begin. I got to the "Pray for the Sick" section within the bulletin and began reading. There was Zoey's name. Comforting in many ways but in others, a stark reminder.Glad for the support but also ,in truth, no matter how strong your faith is,you just get this little shiver when you see your child's name in print or hear it spoken during petitions. As I continued reading, I came to a name and stopped. "Baby Gwendolyn Strong". Such a beautiful name.And like most who see a name when prayers are called for,especially for a baby,you wonder.You pause. A sadness comes over you and you think, another baby.Another family facing some crisis.Maybe and most likely, entering uncharted territory. Seeking support,where ever they can find it.Once again that word unfair came to mind.Fast forward to about a month or so ago. An email was forwarded to me asking to specifically pray for a family and a baby in need of support.A family asking for prayers. The baby,Gwendolyn Strong.There was that beautiful name again.Accompanying the email was a link to a blog for those wishing to "meet" this family and learn more about what they were facing. I immediately clicked over and before me was a beautiful face to match that beautiful name.And what followed was a beautiful and yes, unfair story of a journey that no parent,no baby should be asked to travel.I left a message. Unsure quite what to say.Hoping my words sounded sincere,trying to convey to them what stirred within me as I read about the path they were journeying and the grace with which they were doing it. Yet another amazing family trying to make sense of the senseless. I left a few more comments over the next couple of days.Not wanting to be intrusive and always wondering if you were in fact crossing beyond boundaries and into another families personal ,private and often painful journey.It is a fine line you walk in this blogland. The desire to reach out and the fear you may reach too far.I continued to check on Gwendolyn daily.Sometimes multiple times a day.The other night an email popped up in in my inbox:Gwendolyn's mom.I read her kind words.Unnecessarily thanking me for my words of encouragement.I sent her back an email and heard back from her again the next day. She and her husband have allowed me to tell you a bit about Gwendolyn.Share Gwendolyn's story in hopes it brings awareness to a devastating disease that effects thousands of children.Tens of thousands. I feel privileged to share this with you today .I know I won't come close to doing their story justice.Their words are far more eloquent, real and honest. For it is their story. I could never match that.I will tell you this much,I find it hard to believe that you too will not be touched beyond words after you hear their story. A story that began like most of ours. With a child's birth. And with that birth,hopes and dreams.Gwendolyn was born October 4th of last year.Beautiful,,healthy and strong.Subtle signs ,symptoms and illnesses sent them all over the emotional road map trying to pin down what might be happening to their precious daughters little body. After 6 months of ups and downs,a variable roller coaster of a journey,they indeed found an answer but one they so wished they had not. In April of this year Gwendolyn was diagnosed with SMA1,Spinal Muscular Atrophy Type 1. A terminal genetic disease that results in the loss of nerves in the spinal cord and weakens the muscles connected to those nerves.They were devastated but somehow they have rallied and continue to live their lives in a way that I am in complete awe of .They are living each and every moment they have with their daughter to the absolute fullest. They also have single handily spearheaded a Petition To Cure SMA.The petition is seeking to push legislation through to allocate federal resources to fund much needed and urgent research. I urge you all to take a couple of minutes to sign.It is such a small gesture that can and will make a difference.I commend them on their selfless efforts at a time when no one would blame them for actually being selfish in their day to day living .Retreating.But instead, they are out there spreading the word. There is also an American Express "Cure SMA" opportunity for you also. I again ask you to take another few minutes to fill that one out.Maybe you could even take it a step further and email family and friends and illicit their support as well. Something so small that will mean the world to Gwendolyn and the countless others like her waiting on their miracle.Take some time while you visit these sites I have linked you to and look at some of these faces that God has graced this world with.Look at Gwendolyn.I defy you to walk away unchanged.Maybe even eager to do your part. Make a difference.When you come to the Petition Site,there is a blank area where you can leave a message and say why you are choosing to sign. On the night that Mark and I signed,we read a few of the comments and the one that will stay with me forever was ..."Because Kylie deserves to dance at her prom." That absolutely broke my heart that night.Made me angry all over again. Made me incredibly sad. Made me realize yet again how very connected we all are and can be, if we just step out of our comfort zones and into the world outside our own little boxes.So stop by and meet this precious child. Her mom Victoria and daddy Bill. Sent your prayers their way for strength.Take a little time from your day and sign those petitions.My thanks to Bill and Victoria for allowing me the honor to share a bit about their lives,their journey,a precious piece of their world, with you all. And to Gwendolyn. You are a gift to so many.Some you have never even met.Living proof of all that is pure and good. A little girl sent to this world to teach us once again to choose our moments,live our moments,make the most of our moments.Decide how will we use our time here and these very finite moments. It is in these moments that my faith once more is tested but somehow I always come full circle and know, He is here,beside us and most especially present in these moments.

No More Slacking Off.....

I have been knocked off my blogging game due to these darn Olympics. Don't get me wrong, I love the Olympics. Obviously, or I wouldn't be staying up until 1 o'clock in the morning every, single, solitary night. Extra late because we usually tape them and we don't get started watching till we know there aren't pressing things to attend to. Meaning, all the little ones are fast asleep! It has been so nice to have Jess home the last 2 weeks. She heads back to school tomorrow. I will miss her of course and it blows my mind that she will be a senior in college. Caitlin was here just over night because she and Jess went to a Dave Matthew's concert together. Strange that this house has become the other home. Always home but different. Things have been so crazy around here lately. Trying to make the most of the last fleeting days of summer vacation. Mark and the boys headed to Legoland today. They left this morning and walked bleary eyed through the door at 11pm. Sure sign that a good time was had by one and all. My little Bionicle/Lego fanatic begged to put together his purchases. Exact words, "Maybe if I get lucky I can put together them all." Um, one is 165 pieces. For Jake not a problem but Jake at now 11:20, that's a different story. But as I sit here, there's my little man patiently putting together his lego creations. Jake has dubbed this "The best day ever!" Maybe it's late, maybe he should be in bed but hey, to see the joy in his face, totally worth it. Tomorrow Mark and Taylor are flying up north to San Francisco to visit schools she is interested in applying to. Again, hard to fathom that my youngest of the older set is going to be heading to college next year. Time sure marches on. They will be gone just till Friday night but are planning a little sight seeing along the way. Specifically, high on Taylor's priority list, the "Mrs. Doubtfire" house. My girls have loved that movie for forever. I kid you not, all three can recite the ENTIRE movie, word for word! Should be a really great time for them. Short but hopefully sweet. I will stay back and try and make a dent in some of the last minute school shopping stuff. I am in complete denial that school begins next Wednesday. Complete. As for the littlest princess, slow and steady she goes. We had an evaluation yesterday for her PT and feeding specialist. I really liked them both. Poor Zoey. She had vision therapy in the morning. OT early afternoon and then the evaluation later on. It was about 3 1/2 hours of work for her. But she hung in there and passed out early. We should hear back next week on when those new services will start. I will be anxious to see where she falls as far as development goes. I think MAYBE 6 months on some motor skills and a little older in some other areas. For instance, she can't sit but she waves, kisses, turns pages in books and her latest .... if you ask her where your hair is she grabs it. Pretty cute. I still say that Zoey's strengths right now lie in her social development. She does not miss a trick, interacts with those around her, tries to get peoples attention. She is just is so involved in everything around her.She really cracks us up with all her faces she makes and how animated she is. As we begin to kick up her services ,the key for me will be to find the balance between all the therapies and just living life. We of course will provide Zoey with anything and all she needs to be the very best she can be. However, I know I am still "green" at this thing but as we progress forward I know at some point we will have to find balance. It's not about shooting too low or having lower expectations, it is about deciding, will it be so important if Zoey can keep up with her counterparts with numbers, colors and letters or will her strengths lie where we see her strengths now? Will she be the first to greet people and classmates with a hug and smile? Will she be the first to come to comfort and show compassion to a hurt or sad friend? I know it's kind of early to speculate but with what we have been through, the things we have seen, I know which one I would far more want to see her excel at and evolve into. It is late here, a little after 12 am. Time to wind it down. As for Jake, still at the Legos, almost done. To my friend Kele, sorry for the brief sabbatical. Wish I had some of those profound words of wisdom you were looking for but...this is all I got. I leave you with some Legoland pictures and a short clip of Zoey Grace. Also, I came across this commercial on another blog. We just loved it. Some might not. But it really plays into our types of personalities around here.(Don't forget to pause the blog music at the bottom of this page before you click on the link for the commercial and to watch Zoey's video.You have to HEAR both of these to appreciate them fully!) And Kele my only words of wisdom, breath in, breathe out and in the words of another very wise mom I know,
"If I knew then what I know now, I wouldn't have shed a tear."

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

~ Garnison Keillor

Summer is coming to a close all too quickly. All too soon the kids will be getting back to their school routines. Everyday life routines. As I end this summer, I feel full of gratitude for all it held. Just as I had hoped and for me, hoping is an iffy proposition. Going into certain areas and times of my life can often remind me of expectations, which in turn reminds me of a quote which tells us that life is under no obligation to give us what we expect. So I embrace these summer days with complete and utter joy. The beauty of our everyday lives. Never perfect by others observations but always perfect in ours. Joy that the older girls have and continue to, evolve into these amazing human beings. Exuding beauty from the inside out. As their mother, proud of the road they have traveled thus far and filled with great anticipation of the incredible places they are sure to be heading. The little guys well,they are still filled with that wide eyed wonder of everyday living. Finding the joy in the oh so small things that we as adults often fail to observe but through their eyes, if we pause, we to can see it so clearly. And the little princess. The child who, on a daily basis, reminds us all of what this life we live is about. Her spirit that fills this house daily and lights up our world with a radiance of perfect beauty and grace, well, she remains a constant source of strength for us all. As the summer winds down I pause also for a moment and look back at this world of blogging that I have immersed myself in. Totally and completely and maybe sometimes too deeply. But I have not one regret because what I have gained has been immeasurable. The people I have found. The support, advice and inspiration that I otherwise would have missed out on. The sense of community and belonging that I yearned for. All worth the time. All of it, worth it. I have shed tears of joy and sadness for others. I have rejoiced in their accomplishments and been discouraged when things have not gone as planned. I have wanted to reach desperately across time and distance to give hugs, lend a listening ear or sit in silence right along side those I have become so vested in. Joined in commonality regardless of religious beliefs, political views or in some cases, even crossed language barriers. Coming together as human beings. Seeking solace, compassion, understanding. So as much as blogging can eat up my evenings, it has been rewarding, fulfilling and cathartic. Blogging has more than served the purpose I was initially seeking and exceeded my wildest dreams with the blessings it has bestowed. New people, new faces who now dwell in my heart. I have spent so much time over the last almost two years over analyzing our journey thus far. Zoeys journey. But this summer the biggest gift I have received has been the gift of momentary living. Each and every moment doing all I can to live and breathe each and every moment. Yes, our lives are crazy and hectic. Yes, the road has been seemingly long and unfair to one little soul but these are our moments. We have not been been immune to heartache and why should we have been? Those heart aches and those trials have shaped us. We are learning to embrace them far easier then before. This summer has been one of growth for me. One of change. Better and worse but change nonetheless. I have often faced new chapters with trepidation but as fall comes closing in I follow it with faith. What will come, will come. And with each day that comes, I will give thanks for the gift of that day, those moments and my ability to view it all as the incredible gift that it is.

*Don't forget to pray for Presley today. Her surgery began at at 8:15 am central time. Go to Presley's medical blog for updates, as Kele is trying to update as much as she can. Pray like crazy guys!!!!

Prayers for Presley

Before or after you scroll down and read my newest post,I would like to ask all of you who have found yourselves stopping by today, to do me a favor. I would like you to take a few minutes and click over and meet a beautiful family and their precious baby Presley. Presley is a friend of Zoey's who has been in the hospital since her birth almost 6 months ago.Presley's journey has been long and difficult and will culminate in her open heart surgery on Monday. Her momma Kele and daddy Mike and siblings Mikah and Jett could use all the support and prayers they can possibly get.They are at a very stressful juncture right now and even the support of strangers will help rally them and give them strength to face all that is before them. Their nickname for Presley is little butterfly and she is just so beautiful. Presley is just waiting to bust out of that cocoon of hers,spread her wings and show them how very ready she is to fly home to the loving arms of her family. They want nothing more then to shower her with hugs and kisses, tube and machine free and get to the business of just doing regular baby stuff. Not too much to ask really. So please join me and let the Giles family know we are here to support them with our prayers because they have become so weary and so frightened and sometimes in these moments,especially these moments ,even praying doesn't come as easy as it should. It's the least we can do.

A little snippet of Miss Zoey ......

I don't post video of Zoey nearly enough. I am going to try and be better about that. It is not that I don't take video of her, I just don't think about posting it for you all. It would really be a good idea to do it more often because then you can get a better glimpse of her personality. I can only tell you so much, sometimes it's better to see her with your own eyes. This was taken after her little "second birthday" celebration. She was absolutely exhausted but still darling. When I look at this video I am struck by how little she looks to me. Hard to believe she is 17 months old. She has been feeling much better the last few days. She managed to fight off whatever virus that took hold of her last week. Which is a good thing. Means her little immune system is working just fine. We are having evaluations next week to add P.T. to her already existing O.T. and to add a feeding specialist. Our goal is to get her sitting before too long and begin to try and get her understanding a little about the concept of self feeding. Heck, any feeding would be great. I am not so sure that an appetite stimulant still might not be in order. We are exploring different equipment that would help her along the way. Specifically maybe a stander or corner chair. One of the biggest issues we have is finding a tray at a level where she can "play" with toys or explore food in front of her. Especially during her therapies. Because actually play for Zoey, is therapy. I also recently saw on another moms site, clever ways to velcro or tie things down so Zoey won't throw or drop things all the time. This will help as we are trying to work with container play. Zoey struggles with taking things from and then replacing them back into containers. We are really focusing on that task. A tray connected to a sturdy chair would be ideal. Her First Years feeding chair just doesn't cut it. We have to prop her often and the tray is not adjustable. So as far as therapy, that's pretty much where we are at. Her deficits from her stroke become more apparent as she gets older and the use or lack of use of her left arm and hand continues to be our biggest challenge. We head down to L.A. for a vision evaluation at The Center for The Partially Sighted. This will give us a better idea on her strengths and weaknesses as far as her vision goes. But all in all, Zoey is finding her way. As are the rest of us. Enjoy the little video. Remember, first scroll down to the bottom of this page and pause the blog music, then go back up and start the video. Check your volume control too. Again, a sincere and heartfelt thank you for all of your outpouring of love, support and constant prayers. Appreciated as always.

"Snails see the benefits, the beauty in every inch."

A Gift Beyond Words

August 13, 2007 is often referred to around here as Zoey's "second birthday". Sounds funny to some, I know. But for all of us who saw the absolute miracle performed that day, there really isn't any other name for it. That day, one year ago, Zoey had her AV canal heart repair. A perfect repair. It was a day unmatched by many others previous. There were moments when we wondered if in fact it would ever come. When Zoey's heart defect was first diagnosed at 20 weeks in my pregnancy, we were assured that it was manageable. Serious for sure but totally manageable. Little did we know that Zoey would come into this world hit hard in so many other areas, that the once manageable condition became anything but. She was immediately born into the category of congestive heart failure. Trust me, that is just not the term, you as a parent, want to hear about your hours old newborn. That and leukemia and stroke. But there we were, facing the unimaginable. We faced it together. All of us who loved Zoey. And there are a lot of people who love Zoey. That child was also born a fighter. That is another thing Zoey was born with. A undeniable fighting spirit. That girl fought from the get go. The 10 weeks in the hospital were the easy weeks in the beginning, believe it or not. Once she came home well, that was when things got kicked up a notch. Every single thing our family did or didn't do, revolved around Zoey. Mostly keeping her healthy and alive. Germ free zone for 3 1/2 months and that was a difficult feat with a family our size but we did it. I was and am, so proud of my family and the way they all so gracefully, unselfishly lived their lives during those difficult months. Finally, when pulmonary hypertension dictated it was time for surgery we all regrouped and banned together once again and got done what needed to be done. Especially Miss Zoey. I was asked by a few people that August day, if I cried when they wheeled her into surgery. The answer, no. I was just so absolutely relieved that we had gotten her to this day. That she had gotten to this day. It was not elective surgery. No choice. Zoey needed that surgery, right then, to live. We actually would not know how badly surgery was needed until after, when she began to recover. One of the first things that you noticed, when her little eyes finally opened, was the brightness. Before surgery, they were really a non describe color. After, they had color. They had life in them. Her actual skin color was the other thing. Pink. I finally had a pink little baby girl. When time came to extubate, that was when we noticed the next remarkable change. Zoey did have difficulty after extubation with upper airway restriction. As we teetered on the edge of having to reintubate, the Respitory Therapist and everyone were gathered around working on her. They had her propped up thumping her back and she was crying. I stood at the end of her bed watching and the Doctor asked me if that was her normal cry. My response, I have no idea because she had never cried in all of her 5 1/2 months of life. Zoey was so very depleted in so many areas that she reserved every ounce of energy and she never, ever cried. Ever. Once we got past that scary hour or so Zoey began her fight back. She was amazing. She showed us how much courage could be found in a small 12 pound little body. On about day four of recovery Zoey gave us her biggest gift yet. That gift was one I had been waiting for. That gift was something I had seen time and again, gracing the faces of so many other children with Down syndrome. That gift was a smile. We had never, ever seen Zoey smile except in her sleep. I yearned to see her smile and then all of the sudden it was there. It was as if she was saying,"Thanks, I feel so much better." She smiled at anyone and everyone. Her smile lit up a room. Her smile is contagious to this day and except for the time when Infantile Spasms invaded her life, her smile has been a constant. God has blessed us in ways too numerous to count and in ways that allow us to be humbled, hopeful and forever grateful that He carried us in our moments of weakness and strengthened us in times of trials and I have got to believe, rejoiced right along side us as Zoey overcame each and every obstacle set before her. Happy "second birthday" Zoey Grace, your strength, resiliency and determination continue to inspire us each and everyday.

*Zoey 6 days post op waiting to come home, Zoey's first bath at home after surgery and finally, today at the beach, all my little darlings!

Weekend Update and Zoey's bloodwork results ....

Alright,I did let you off easy yesterday with the short post. Although I did request a lot of out clicking to fully get my point across. Thanks to all who took the time to do it. This issue,this topic can never be over done. We need to continue to educate those around us on behalf of all the ones we hold so deep within our hearts.Even and most especially those we do not know and who cannot speak for themselves.With that said,this post may not be as short.Just a whole bunch of random things to talk about.First,Jess and Caitlin are of course home and I am loving it. Enjoying each moment. We just have so much fun together,really. They have fun together. They spent a great deal of time yesterday and today making friendship bracelets. Yes,my 21 and 19 year old , just sitting around making friendship bracelets. Even one for me. We have been hanging out together.Watching the Olympics, catching up.Me,feeling incredibly fortunate, that they do live close by and that they like coming home.Reminded in these moments, how lucky I am to be their mom.Last evening we all headed out to dinner. All of us. Taylor's boyfriend Brandon in tow. Before dinner we went to a local college,California Lutheran University,for a very special art exhibit.A local artist,Noble "Ace" Powell, who has a daughter M.E.,who happens to have Down syndrome, has had his artwork show cased there for the last two months.This particular collection was paintings of mothers and their special needs children.They were amazing paintings. They were breathtaking. There were only 8 paintings but those 8 were some of the most beautiful portraits I have ever seen. Next to each painting there were attached writings,stories and poems, that are specific to the special needs community.For instance,"Mother At The Swings","Welcome to Holland","The Special Mother" and,Patricia Bauer's article on what impact medical advancements,specifically prenatal screening, will be to the the Down syndrome community as we know it today and more importantly the future. We were the only people there, as it was the end of the day and to be able to take it all in,just us,by ourselves, was pretty special. We then headed to dinner and then grabbed some yummy Ben&Jerrys ice cream. Sunday found us all heading out to church together. Something we don't often get to do now a days.I was sitting next to Caitlin and I remarked to her ,as I looked down at our row,"Wow,I have a lot of kids."It is amazing when I see us all assembled together. Beautiful and amazing. She said,"Can you imagine what it will be like when we all are married and all have children of our own?"I can't imagine and I can't wait!! The rest of the day we did errands and just tried to hang out a bit. Our weekends go so fast and we have so much to try and cram in. Necessary stuff mixed in with the fun stuff. Oh,and yeah,Mark was home! The program he was suppose to work on got shifted around a bit so he was off the hook. Very nice surprise indeed. Boy, did he need the break. Just looking at his eyes will tell you he is a bit worn out. As for Miss Zoey.First,did we almost have a major medication issue tonight. Just as I was getting her evening medication ready, I went to the cupboard and just about lost it when I picked up the empty bottle of Topamax. Yes,empty. We did call in the prescription ,however it would have been helpful if we had picked it up. For some reason,maybe because Mark hasn't had a day off in awhile but for some reason it felt like a Saturday. The day came and went and well, we forgot.We scrambled and called a 24 hour pharmacy and they were so kind as to give us two tablets until we get ours tomorrow.Crisis averted.Now as I mentioned in a post a few days ago, Zoey has not been herself.Nothing too earth shattering except some marathon napping. Well,that continued along with others noticing she was a little off.No way was I going to be able to wait until Monday to get things checked out. Due to her blood disorder we have a standing order at our local hospital for all blood draws. We use to have to go to Children's,which ended up being an all day appointment in the oncology/hematology clinic. Not fun.Instead we do it locally and if anything out of the ordinary pops up,well, we unfortunately know where to head.Our pediatrician happened to be in Saturday morning and wanted to see us before we headed off to the hospital. He checked her out. Didn't see anything that stood out but knew that outward appearances don't necessarily count,especially where Zoey is concerned. He added a few additional panels he wanted to check and off we went. Nothing like a drop in at your local hospital lab to start your Saturday morning off. Zoey was a trooper,we left and then we waited. Waiting. The part I hate.We spoke to him a short time later and I guess mom's instincts were right but thank goodness not nearly as serious as I often fear. She has something brewing. Probably just fighting a virus. Her lymphocytes are off with a Atypical cell present but we were assured it is probably consistent with a virus. Her platelets were good. Really good for her. Her white count was great. As well as her red. So good news but boy today she is not feeling well at all. No smiles. No playing. Very tired and well,not our happy little Zoey.No actual outward signs of whats going on. I hope today is the day it is all peaking and tomorrow she starts to pick back up. Please keep Zoey in your prayers, as we would really like to see her feeling more like her carefree Zoey self. .Well,that's a wrap for the weekend update.Thanks for hanging for the long post. I am always grateful.

The "R" word revisited .....

Here we go again. I am going to make this as short and sweet as possible. Some may say, totally impossible for Heather. Nothing is short for that girl! Not tonight people. Tonight you catch a break. There are far too many other people who have said it far better then I ever could. You would be hard pressed over the last week, to wander around in blogoshere for too long and not read about this latest controversy. And rightly so. Tonight we review the "R" word. You know ..... retard. You know, the word that just rolls off peoples tongues like it's nothing. Out of "habit", not really "meaning" anything by it. No concern to the countless people out there that it offends and hurts. I have a link to the right, that if you haven't ever clicked on it before , please take some time and do now. It is an amazing piece of work,"Soeren Palumbos Speech on the Word Retard". Then I want you to click on a letter that an incredible man named Dave wrote. Then I want you to do a little reading about the soon to be blockbuster hit Tropic Thunder. After all that, I want you spend some time here with Zoey and her site, then visit, Sam and Parker and Rhett and Sheena and Reagan and Kennedy and Chelsea and Presley. And then, from there, get lost in the countless links from their sites. Links to some of the most amazing children and families that I know you will EVER come across. People who make this world a better and brighter place for all of us to live. Their very presence on this Earth give us glimpses into what God's perfect love and perfect Grace is all about. Then I want everyone to think twice before they or anyone else spends their hard earned money sitting through a movie, just for the sake of some laughs but in the end at the expense of the innocent. And finally, I want everyone to think twice before they or anyone around them EVER uses the "R" word again.

Like Mother,Like Daughter .......

I love chocolate. I have been known to eat only chocolate .... all day.Not healthy but definitely yummy.Definitely an addiction, Could be worse I suppose.Yep,that's chocolate gracing the face of my 17 month old. Chocolate pudding.Actually chocolate SOY pudding. Remember,little miss is allergic to milk. So why is my child painted in pudding? We started some feeding therapy of sorts today.Monday I called our coordinator at Early Intervention to discuss adding some other services.I must say we are so blessed to have at our disposal,services at the ready. No fight. Just readily available.I have never taken that for granted especially when I have learned how difficult it is for so many others,in different states,to get much needed services for their equally needy children.The plan is to keep Jacquie,our O.T.,at least once a week. We are going to add P.T. twice a week. Keep vision therapy once a week and add a feeding specialist. Our coordinator basically said that she will approve what ever I feel Zoey can tolerate.So,we are really fortunate. Zoey is really fortunate. So today we tried to introduce Zoey to some food.Now,she does eat some baby food,that I feed to her. Before Zoey started seizures she ate like a champ. She ate a ton and and was very proficient.Now,not so much.Total food aversion. I just keep at it by feeding her "meals" three times a day. If she gets two spoon fulls or ten spoon fulls, at least it's something.But as far as feeding,as in herself,well, she just isn't anywhere near understanding the concept. These picture give you an idea of how you begin the introduction. You kinda just let them at it. This helps with any sensory issues they may be having and allows them some autonomy.We gave her a little Nuk thingy to hold. A Nuk is a soft rubber type thing with nubs on the end that we can massage her gums with. It kind of wakes up her mouth a bit.She wasn't at all opposed to the process. In fact I think she liked it.She kept making these cute little grunting noises that we have never heard before too. Since she's a girl of few words or sounds,we got a kick out of it. We certainly had a blast watching her. It's just a starting point,a good beginning and although she didn't actually put any of it to her mouth herself, she hopefully will and with any luck she one day will be able to feed herself. The things I absolutely took for granted with my other children. That pincer reflex.Hand mouth coordination. The motor planning involved. Very complex steps for a child such as Zoey, that have a number of issues hindering the process. That's okay,slow and steady she continues to go. Not much else to tell. She's been a little off the last few days. Sleeping marathon naps. Any of my other children I would chalk it up to growing but not the case with Zoey. She is due for a blood check in three weeks but I think I will take her on Monday just to hopefully put my mind at ease. The thoughts I have to entertain.Those are my least favorite parts of the journey. The rest of the crew? Jess and Caitlin are home. So that means iIhave all my children under one roof for awhile. Caitlin is home until Wednesday and Jess until the 20th. Mark and I are thrilled to have them home.Although Mark will be working all weekend again and he didn't get home until after 10:30 pm tonight. So I'm not sure how much time he will actually get to spend with them. Jake and Joe are thrilled to have the girls home and Zoey gave then both huge smiles when they came through the door. We have enjoyed watching the Olympics together tonight and that will be how we spend much of our evenings together over the next few weeks. Did any one see the Coke commercial tonight? All images of great Olympic athletes receiving their medals and scattered throughout the commercial, were images of some other pretty remarkable athletes receiving their very own medals.Let's put it this way, we commented to Zoey that that will be her one day! It was a sweet commercial.That's all for tonight. I am exhausted and so ready for Mark to have a day off. Seven more days and one will finally come. My husband works so hard for us. He is an amazing husband and an equally amazing dad. Always pulled in two different directions and by necessity,the one side he wishes didn't win out ,always does. Thanks honey for all you do. I don't say that enough.I'm sorry for that. We love you for your daily sacrifice and I am forever grateful to be your wife and to have been able to be home with the kids for all these years. That has been such a blessing to us all.

"Oh,The Places You'll Go!"

We absolutely love books. I use to spend a great deal more time reading independently. Now a days, not so much.Independent doesn't even make it into my vocabulary. I don't seem to have time or rather I don't seem to make the time. My reading lately consists mainly of People Magazine. Mindless,quick ,"unthought" provoking,lose myself in senseless stuff, reading. People Magazine,another vise. Only thing better is, People Magazine along with a Starbuck's hot chocolate chaser. As for the kids and their reading that's another story.All kinds of children's books can be found around here. In fact,if I could, I would so open a children's book store. It's a dream I have. Just a few necessary missing components, the capital and the time! Any how. Our home is packed full of books. Always has been .Even when I had no business buying books because we had not two dimes to rub together,there I was, buying books for the kids.I guess it paid off in the end. My children could all read before they hit kindergarten.They are all fantastic writers. Joe might be an exception because of his speech Apraxia but it still made a difference in his receptive language and once he did begin talking, I know it helped tremendously with the expressive part. And,Joe, my little ADHD boy,well he is good as gold during book time. Today my children have such an appreciation for reading .Some more than others but the older girls will all tell you the same thing ,each separately, if you asked them unbeknownst to the other and that is, one of their fondest childhood memories revolves around reading. We have always had the same bedtime routine for all the kids. Dinner,showers or tubs and wind down time is books. The girls would all head for the shelves of books and I kid you not, an hour and a half or more ,curled up together in Mark's and my king size bed, piles of books and we would read and read and read.Even if we find ourselves out late somewhere,there is always a book or two before shut down. We have seldom ,if ever, missed reading. Even if the girls don't find themselves lost in books today,I know they would tell you, that they could not imagine not having this same routine one day when they have children of their own. We all love to go to book stores and just get lost for hours.My point. Because yes, I actually do have one. Well, first,little Miss Zoey's birthday, she shares it with the beloved Dr. Seuss. Yes, that magical author, illustrator who had an amazing way of weaving magical,unique characters and tales that appealed to the masses and more often then not, found a way to sneak in a life lesson or two. Jake thinks it's pretty cool Zoey shares this day with Dr. Seuss. Even one of our primary nurses from Children's gave Zoey a darling T-shirt that will fit her one day, of the all time favorite ,Cat In the Hat character.And Taylor,just yesterday, arrived home with this equally darling onesie for her little love.We have also been known to call Zoey Cindy Lu Who on occasion ,when she has her little hair on top of her head. Alright,on to my point. I do not read to Zoey the way I did the others. I began reading to the others when they were old enough to sit on my lap. It is not that I never read with her. She loves books . She can turn pages. She sits patiently on your lap.It is almost her favorite thing to do during therapy. We do read Good Night Moon and Time For Bed at night. But not faithfully like I did with the others. I really have to change that up.I have to make a concerted effort to make it just as big a part of her life as I have the other ones. I don't consciously not do it but I don't consciously do do it either. I need to give Zoey that same gift I brought to the others. Maybe especially more so for Zoey.Because as it says in one of our favorite Seuss books: .... "And will you succeed?Yes!You will,indeed!(98 and 3/4 percent guaranteed.)KID YOU'LL MOVE MOUNTAINS!"Well, I guess that's all I've got tonight. Some might say it's plenty. As I finish up I want to thank everyone who called me or commented or emailed me after my post yesterday.Heavy I know. Sorry.It meant the world to me to hear from you. And for all who came and maybe just read, I thank you also. In the words of my friend Tera "man,you got to commit" when you come visit my site. I know my posts are long.They can be way to deep and sometimes downers. I know your time is precious and you have other blogs to fly by to. I hope that occasionally my posts lend something to someones,life. I hope my posts haven't become rambles of a crazy mom. If they have ,then it might be time to rethink this blog thing. Because as much as I say I write for myself or for Zoey , I would like to think it also gives a little to someone else out there occasionally,every once in awhile. So thank you everyone. Really and truly thank you.

Random thoughts on belonging and searching

Each day that passes I find it easier and easier to retreat into my self imposed isolation. Sounds kind of dark doesn't it?Actually,it can be sometimes,if I allow it to be. As we settle in and find Zoey in a stable place, it lends more time to review and revisit certain aspects about the last 17 months. When you are in the midst of crisis it is much easier to operate in survival mode and ignore some of the happenings around you. Yesterday I began my day in tears and ended it much the same. The middle part fine ,actually better then fine.Everyday stuff.The day to day living that no matter how crazy the day might be, at the end of the day I feel we have made the most of our moments. The morning thing was so out of no where.Mark and Zoey have a special routine of showering together everyday. It's very precious. I was getting ready to hand her to him when I mentioned that I had talked to my good friend Shelby the day before. I love Shelby because our conversations are always so not about where my life is. She is the mom of three. Her youngest is 2 weeks older than Zoey.Charlotte is her name and she's just a doll. Well,I barely got Shelby's name out when I started crying. I began telling Mark that while we were on the phone Charlotte was chitter chattering and getting into mischief. At one point Shelby went looking for her and found she had emptied out the entire shoe basket. Shelby went on to tell me that Charlotte has a shoe fetish. Loves shoes. Follows you around and asks for the shoes off your feet. The visual was such a reality check for me. Although I didn't realize it at that moment. It wasn't until later that it hit me. In that moment of listening to Shelby, I smiled , a genuine smile, and told Shelby that I probably took it very much for granted when my others toddled around the house with shoes that were 10 sizes too big for them.I told Mark that I could never imagine Zoey ever doing something like that.Will she ever be capable of such a complex task or activity? My little sweetie ,who I wonder daily, as I sign to her and talk to her,what does she really understand? I once said that Zoey knows all she will ever need to know and that is, we love her beyond words. Beyond even our understanding. But there are those moments when my mind wanders. I think not only about the Down syndrome aspect but the stroke and the Infantile Spasms and the combination of the three and I wonder and sometimes,not often ,I get angry for her. Maybe a little for us too,lets be honest. I took my little love from the shower,she snuggled into me and I kissed her and memorized each part of her perfect body as I massaged her lotion in.She flashed me numerous trademark Zoey smiles and I pulled it together and went on with my day. Evening came,quite stubbornly I might add. Mark has had 7 days without a day off and 12 more days to follow before another day off.. He got home around eight. Have you ever heard the expression"Stick a fork in me I'm done" Well, my twist is, "Stick a PITCH fork in me,I'm SO done".That accurately described my mood. Zoey went down,like the dream she is.She has been sleeping entirely through the night again for weeks now. Heavenly for us all.Mark read to the little guys and I sat down with the computer.That's when the second wave of sadness began to take over. I realized how alone I am. That for the most part my days are spent,just me and the kids,not much contact with another adult. An occasional phone call here or there.The fact I don't have a husband home to talk to most nights makes it all the harder. So I usually sit alone with my thoughts. Which sometimes is not good.After reading The Mother at The Swings I have spent a great deal of time evaluating my relationships. I began thinking of the few "rocks" in my life that have stuck by us, that I am forever grateful for. A few new "rocks" that have entered our lives that I feel blessed to have found. The great number of "wanna be's" that just can't find their way to us again and all the gingerbread men that have run so far away. Sad some of it, really.Even family and friends that have never,ever read my blog. Maybe too afraid to see what we really face daily. Zoey faces.Where we have been .Where we hope to go.Some were no where to be found during the ACTH days. Some who have now found their way back as things have gotten better. But me unable to truly let them back in.Where were they during the tough times? They are slowly circling back only to reap the rewards of kisses,hugs and snuggles from the now stable Zoey but where they for the 20 hour g-tube feeds,injections,seizures and so on. What made it so difficult to call or stop by? Just keep me company. I have always had a open door, open question policy.I have always kept an open heart.At least tried to. I have always acknowledged how this has been a journey for everyone that surrounds us. I have tried to understand that and others feelings and their very personal ways of coping.But when push comes to shove, there have been very few that have walked the trenches along side us. It is one reason I hate to venture too far. Afraid to run into people. Why do I want to answer,"How are you guys doing?",to someone who has virtually been non existent over the last 17 months. Do they really care or is it just the obligatory question? Do they want me to begin spewing the often ugly truth. Let's see...."We lost our house, our savings,our retirement,Zoeys right hemisphere,yes of her brain, may have to be removed at some later date, we feed her through a tube in her stomach most of the time, her blood disorder might very well come back,we're trying to restore normalcy to the other kids lives, but hey other than those little tid bits,great,absolutely great"Maybe while Zoey is in this stable place, now comes the time to seek out support.But from where and what community? I often feel not even part of the Down syndrome community.True. Hard to speak but true. My own hang up?Absolutely.Why,maybe because I have only been in contact with one other family that has had a child hit as hard as Zoey. I often cannot believe some of the children out there that are sitting,crawling even walking.Some,most ,younger than Zoey.Do I feel that Zoey has been screwed in some ways?Yep,I do.It becomes a matter of feeling as though I'm an island out here,once again.Where exactly do I belong? One thing for certain,as difficult as a conclusion it is to come to,the life before Zoey is not the place.Sure,certain aspects remain constant but the casualties of friendships and relationships becomes more and more apparent.I cried myself to sleep last night. That deep,out of nowhere,often not a sound coming out, cry. Unable to articulate to Mark it's origin. Unable to make sense of it myself. I have become tired of the constant looking for reasons,purpose,placement and compartments. I am just tired. It is often after the crisis somewhat subsides that one realizes how absolutely tired you are.I come from a small upstate NY town. I often yearn to go back to such a place.Any place that feels slower. Where we are just virtual unknowns. Not," did you hear about the Needham's baby girl". Most well meaning but absolutely draining.I continue to seek that peace that I so often speak of. That tattoo,yes tattoo,for those of you new to my blog,my life. You can catch a look of it in my archives if you feel compelled. It's a dove with and olive branch,on my foot, that I had done the night before Zoey's heart surgery. We are coming up on that year anniversary. I had hoped that peace would have inhabited my heart more often this last year. That the Holy Spirit would have brought more peace and acceptance to me.Acceptance of others mostly.Acceptance not of Zoey and how she came to use but rather acceptance for all she has had to endure to be here.Instead it has been a constant struggle.I have a long way to go. Obviously.I continue that battle between such absolute joy at where we are and continually praying for that daily strength to hold on to my faith in where we are going.

Hills,Valleys.Plateau's ......

It seems as though the state of Zoey's little life could often be described using some geographical term of one sort or another. The same could hold true for the rest of us. Throw in island or huge,massive mountain and you begin to get the idea. I think Zoey finds herself grazing comfortably on a plateau as of late. The girl is tired and certainly deserves some time hanging out on some stable, level ground. However comfy that may be,to dwell there too long would not be in her best interest. We all have been basking in the absolute sunshine of these days. Having her seizure's under control,yes,I used the dreaded "s"word,once banned in this house,is a possible sign of the comfortable place we have all found ourselves to be in but a reminder always follows:Do not get overly confident with the current state of affairs.This summer, which bares a stark contrast to the happenings of last year, has been nothing short of amazing.To find ourselves coming and going with Zoey, as we please, has been so freeing. My goal of making up for lost time spent just doing, has certainly been realized.Sure,there still is stuff I wish we could do or could have done but isn't that always the case?To be able to travel relatively tubeless,cordless and "seizurefreeish"well,let's just say that not one moment goes by that we do not count ourselves and Zoey blessed. As for that plateau .... as wonderful as it has been to see her in this place of stability I think,I know, it's time to really dig our heels in.Zoey's O.T. has been on vacation for the last two weeks.I haven't been too concerned about her absence, as I feel fairly at ease doing therapy with Zoey myself. The thing is, I think we have stalled a bit. No progress to speak of.Not that I haven't been rejoicing in the lack of regression but I know my daughter and what she is capable of and I am thinking we may be losing precious ground. Window of opportunity is everything with some of these children Especially when you are all too aware that seizures could reoccur tomorrow. Heck,they could reoccur within the next minute. Seriously, you never know. We want Zoey to have reached as far as she can go when and if,I'm opting for the never option,but if ,surgery becomes necessary. Jacquie,our O.T.,has become very comfortable. Which is a really great thing in a way and not so great in others. I think she often views Zoey as still very fragile and often opts in giving Zoey a mommy fix when she gets upset during therapy.Therapy is scheduled for an hour and we rarely get to a half hour. Jacquie loves Zoey. I have no doubt of that.I feel as if she,we,have crossed a line,clouding it with patient/family vs clinician/friend relationship status. Hey, I am the last person who wants Zoey to work hard. I feel she should get a lifetime pass on hard after all she's endured but that becomes a disservice to Zoey. We need to push her BECAUSE of all she has endured and survived. It speaks to her determination and her capabilities. So next week we kick it into high gear. I have already contacted our case coordinator with Early Intervention just so she can spell out exactly what services Zoey is eligible for. Our O.T comes 3 times a week and her vision specialist from Junior Blind of America comes once a week. What about a P.T.? Or what I am interested in is a Feeding Specialist. Zoey's eating,or lack there of,continues to be one of our biggest battles. We have come to rely on her g-tube to supply her with the vast majority of her nutrition.I still think an appetite stimulant might be in order to off set the Topamax and it's appetite suppression effect it's had on Zoey. As long as she remains on the Topamax,which we have been told is like ...forever,then the appetite will not improve. If we do not jump on this eating thing then we very well might be chasing her oral feeding for a long time to come. So that is about all on where Zoey dwells geographically.Comfy on a plateau. Cute as can be there too. Today Zoey is 17 months old. I will not look at what she cannot do at the tender age of 17 months instead I focus on the miraculous things she can do. Just being here ranks as pretty darn miraculous if you ask me.

*Zoey in her bumbo transfixed on a Baby Einstein video. Zoey in her bumbo arching,one of her favorite things to do,thus a possible reason she doesn't sit yet! Zoey and our dog Lola. Lola is terrified of Zoey for some reason and this is about as close as she ever gets. Check out the very disinterested demeanor of Lola. Please also note the bandanna on Lola. We aren't in the habit of dressing our dog. That's courtesy of the groomer.