And the changes keep on coming

I have learned to adapt to change far easier than I use to. It doesn't mean I LIKE it any better, it just means I HANDLE it slightly better. Another gift of Zoey and the lessons she continues to bring to my life,our lives.However,I used to dread change, I always looked at it as facing a loss of sorts. Why I equated change with loss is beyond me but that state of mind is what caused me to face change with such apprehension and trepidation. Anything connected with change was a desire for me to hold tighter to the set norm . That even included birthdays. Not mine, those don't faze me, however my children or parents, boy that was different story. Birthdays, can you imagine? That barely constitutes as change, that's just life,plain and simple, actually part of the good stuff that occurs. But it took me awhile to see it that way. The tradition in the house here for birthdays is as follows: Morning of your birthday you find the table decorated with confetti and balloons, your favorite candy, a new birthday outfit, a few presents and the "You are Special Today" plate. Your baby book and photo album set out to reminisce. I set it out after all the kids head to bed. I have been doing it for the last 19 years or so. Definitely a tradition. The part of the tradition that has ceased is the tears. Yep, every time I would finish setting up the table I would go through the baby books and cry. Every time. Up until about 10 years ago that is. 10 years ago I vividly remember having just dropped the girls off at school and was heading through the school courtyard when I ran in to a woman named Diane. Chances are if I were to run into her today she would not recall .as I do,our chance encounter.For me however, it was a pivotal meeting between two moms just doing their daily thing. She mentioned to me that I seemed down and was everything alright. I said I was a little off and that it was one of the girls birthday and I was feeling melancholy. Yearning for them to be little again. Regretting things done or rather time lost not doing. Feeling time was passing too quickly. On and on I went. Feeling actually sad,if you can believe it, on one of my child's birthday. She hugged me, looked me right in the eyes and said something along the lines of: embrace the change, feel joy for another birthday, smile at their growth mentally and physically, be thankful that this day has arrived and they are here to celebrate, you are here to celebrate. Diane's daughter Christina was in remission from Leukemia. Each birthday that she celebrated was truly a celebration. I never, ever cried or was sad on another one of my children's birthdays ever again. Ever. Change of other sorts continued to be a struggle but her words to me that day helped me embrace them with a different perspective. Someday I would like to run into Diane again and let her know that the few minutes she spent with me that day had had a profound effect on me. So, you ask, what change is on the horizon in the Needham household? Really, not on the horizon, actually change will happen at day break. My darling little Caitlin will be moving to San Diego tomorrow. I can't believe it has crept up on me so quickly. With her, Danny, or "Dream Boat" as we refer to him, goes too. A double whammy. They are not your average 19 year olds. Far more mature then the majority of their peers. They bring such joy to the house. Always here. Playing with the kids. Loving on Zoey. Hanging with us old folks. Just really and truly loving being here amongst the craziness. But the great big world is calling them and as her parents it's time to let her go. No choice. It's not a matter of letting, it's a matter of the actual letting go. Wings have been easy to give my kids it's been allowing them to fly that has come harder. I know one thing for certain. We have done all we can up until this moment. We have encouraged, accepted, advised, listened, not judged, given her roots ,instilled values, brought God to her, which in turn she has soaked in and given back to the world. She is strong in character, loyalty, faith, integrity,honesty and work ethic. She is bright beyond words. She is focused. She is kind. She is loving. She is forgiving. She is my Caitlin and I will miss her. But I will continue to be here for her,always. I will embrace this change, for this is how it is meant to be. I was given the gift of her to love and bring up and let go. Find her way. I have no doubt in her capability rather my capability to weather this change. I am so proud of this child. Another child of mine that I stand in awe of and question how is it that I had a part in the person they have evolved to be. I will miss her laughter and smile and quick wit but she is still really here, living breathing and taking in every aspect of this life that is hers. Not mine. This is not a loss. A change for certain but not a loss. So off she goes my second born. I am excited for her. There is so many wonderful,beautiful things waiting for her. I am so blessed that she calls me mom. I am so honored that God once again placed in my hands, with trust,the raising of such a sweet soul. It's all good girl. You will be fine, I will be fine and we will enter this next chapter together, regardless of distance. Be good, be safe, keep that faith strong and know your momma will always be here for you, always.

The Mother At The Swings

I have a nightly ritual. It involves my blogging obsession. Yes, I have reached a point where I can comfortably say that it border lines obsession. Obsession, therapy, escape. Call it what you may but often it works for me. Each night I sit down after the kids have been put to bed, laundry has been done and house picked up. You know, those necessary evils completed. Once I grab the laptop, I am lost to all for awhile. Whether it's to post or check on our friends, that's usually how I wind down my day. I seldom get lost jumping from one place to another. I visit our new found friends, who now are old and dear friends, post a comment or two, find out what prayers they may need, see what support we might be able to give, be it sometimes and often thousands of miles away but support nonetheless.Not much wandering,pretty routine and methodical. That is until tonight. Tonight one click led me to another, which led me to another and so on until finally I headed back to post for a second time today. I didn't plan on posting again today. The earthquake and subsequent events of the day left me spent. However, once I checked on our Brave Little Hero Parker, well, it was a whole different story. Tammy, Parker's very cool mommy, posts over at 5 Minutes For Special Needs. Her post today moved me for so many reasons. Spoke to me and nudged me to get lost a little bit longer in "blogosphere". Tonight I share about a boy and a mom whom I have never met. A little boy Evan and his mom Vicki. A mom who loved her son more than words, even her eloquent, honest words, could ever convey. She lost her little guy this past week. Sad beyond most of our comprehension. Vicki blogged about her life with Evan, his disabilities, their life as a family and so much more. She is a talented writer who wrote a piece called The Mother At The Swings. This story was me this week. This story was me on Monday.This story is me almost everyday. Please take the time to read it . It may give some of you a brief glimpse into, how we, mother's of Special Needs Children, sometimes view the world around us. Because honestly we do feel, I do feel often, I am on the outskirts looking in. It is words such as Vicki's, that we feel deep in our hearts but lack the ability to articulate it to those around us so that they might understand, if ever so briefly and momentary. This exact situation happened to me on Monday. A mom right next to me, with her son, on the swings. Singing, laughing, talking to each other. Not much older then Zoey was this little guy. His mom was really trying to interact with Zoey and I. Commenting on how cute she was. Trying to be comfortable with us but not quite knowing what to say to us as I struggled to keep Zoey upright in the baby swing,to no avail. Not quite able to find the words. I wish she did. Or could have. I tried to tell Zoey's story a bit, I always do, but she just didn't quite get it. I couldn't blame her. I felt bad but I couldn't blame her. She tried. Maybe in the end she took something away that day from our brief encounter. Vicki also talks about gingerbread men in our lives. You know,as she put it, the ones you thought at the beginning of this life changing event, would be "rocks" but somewhere along the way became "gingerbread men"," run,run,run as fast as you can you can't catch me...."You know how the rest of the story goes. I actually had a discussion with Presleys mom today about this very thing. Vicki's words so accurately described the transformation of our families friendships with many, over the last 17 months. Sad and very accurate. A strangers story that instantly could have been mine. As a tribute to her son and the love he had of swinging, we are encouraged to place flowers on a swing of our choice, take a picture and send it to a flickr account that has been setup, letting Vicki and her family know that Evan will not soon be forgotten. Evan's family is also asking that if you are so compelled, you may make a donation in his honor to The UCLA Pediatric Epilepsy Fund or to a pay pal account where monies will be spent on things Evan would have enjoyed in his lifetime, like swings or trees for shade at parks. Today was a reminder to me that this blog, that was initially started to vent a bit and pass on events of Zoey's day to day life to far away family, has become so much more. In fact the vast majority that visit us daily are not our flesh and blood but you have all become family. A child such as Evan touches countless others because his courageous mom, an advocate for those with disabilities, chose to share her intimate, personal journey and through that unselfish act, Evan and his life touched us. Leaving his mark on our hearts. Tonight kiss your babies of all ages, tell those you love, how much you love them. And next time you are at the park or pass a park with swings think beyond the tangible object and step outside the comfortable place you find yourself. I intend to. Reach out to that mom behind her child on the swing. She wants you to. Trust me, then thank Vicki and remember Evan. Always.

Shake,Rattle and roll!

At 11:42 this morning we received a gentle reminder that yes in fact, we do live in Southern California! An earthquake, originally measured at a magnitude 5.8 now downsized a bit to a 5.4, decided to roll through just to keep us on our toes. Like we don't have enough action around here. Nothing like a nice jolt, sway and rumble to get the old heart racing. I was home. With Danny and Caitlin. About to head out the door to get the boys at soccer camp when that oh so familiar, eery feeling and sensation took over my body. Zoey was in for a nap. Caitlin screamed for me to grab her. I went in and she was sound asleep, not a clue. Thing is, you never know if a bigger one will follow so I had to pick her up which in fact woke her up. I headed out the door and got the boys. The soccer camp was oblivious to the latest happenings as they were all busy being in motion which makes it nearly impossible to feel the earth move. The camp is being run by guys from the U.K. so they were bummed out they didn't get to experience some good old California entertainment. As for me, I don't think I will ever get over that feeling of dread when one hits. Hard to explain what it does to ones state of mind. I also suffer from a fairly debilitating disorder know as Meniere's Disease and let me tell you, something like an earthquake effects my vertigo and my functionality in a very nasty way. Screws up my equilibrium.Effects my hearing. Meniere's is usually limited to one ear but I,like Zoey, fall into the 10% category of everything and have it bilaterally.Lucky me. Instant migraine, nausea and vertigo that makes it extremely difficult to perform normal, daily activity. So,my day is pretty much shot. I will have to lay low and move forward with my day the best I can. No choice actually. Mark of course felt it in Hollywood also. We had a hard time getting a hold of each other because phone lines become flooded.But eventually checked in with the rest of the family and made sure everyone was alright. They are. We are. Just one of the sacrifices we make to live where we live. We won't let a little earthquake scare us off.The only thing to do at this point is carry on with our day and pray for no aftershocks. That's all here. We'll keep you posted if anything else happens that keeps us guessing. Hopefully not.

"You don't choose your family. They are God's gift to you ,as you are to them" Desmond Tutu

Funny how time goes. Just a mere 12 hours ago I was standing in my parents kitchen hugging my niece and nephews,my sister and brother in law. Giving kisses,passing Zoey around from one anxious arm to another. Zoey freely passing out kisses of her own and now, here we are. A time zone or 2 away from each other. All of them, sound asleep in Houston and me,here, going over the last week and wondering how in the world did it pass so quickly? A stark reminder of cherishing the time we spend with each other. Unsure when we will see each other again. Me, being real big on making the most of moments lately and feeling for certain I missed out on making the most of some of our precious time together. Feeling absolutely hypocritical.I have been heard on occasion, spouting off how life is short, live each day without regret. Knowing in this moment, I for sure have regret on the way I spent some of my time with my Houston family. I talk to my children about not having the chance to recreate moments and I messed up moments this past week, big time.Not very proud of that fact.I will need to make peace with myself in that area. Peace probably with them also.I don't think I honored God's gift of them this week, as I should have. I remain in a really strange place and hope that this latest phase or place or whatever you call it,that I have found myself in ,will pass quickly.For now, here are a few pictures. I could have posted a ton of Miss Zoey smiling and giving kisses. She was so "on" last night.Quite the performer. Almost as if she knew people were taking pictures.Or so I was told.Jess,Tayor and I were not around though. We were in Irvine at a John Mayer concert that we had gotten tickets for back in May.One of my favorite artists. Incredible concert.That's where the picture of the two of them and I was taken. Most are from the family gathering at our house last night.Zoey waving and giving kisses.One is of my mom,my two sisters,Jess and I at dinner on Saturday night.Point one, notice their beautiful, curly hair and my well,very straight hair. Yep,2 sisters,two brothers and all my children ..... extremely curly hair. Me,not a single curl! My oldest brother use to tell me it was because I was adopted. I am not so sure that it might not be in fact true.Point two, I NEVER have my picture taken.That I posted them for the world to see is nothing short of amazing. My children tell me that they will never be able to do a video,scrap book or anything for me or of me because there are no pictures of me, anywhere to be found. Well,very few. Most I am wearing sunglasses.I tell them feel free to photo shop someone of your choosing in my place if you like.I for sure hit my quota for the year in one weekend folks. Another one of my numerous quirks and hang ups. Yes, I have a few, very aware of them. I have to pick and choose which ones to work on. My photo phobia is very low on the priority list .Another busy week is well under way at the Needham household. Stuff,stuff and more stuff. Mark will be working the next 2 weeks straight. Weekends included. Not looking forward to that. No choice though.Summer is evaporating right before my eyes. Kinda scary.Busy lives make life evaporate, that is for sure. Still trying to find that magic way to slow it down a bit but haven't quite perfected the method. Till then I will try to embrace the speed at which it's moving and make the most of the moments. Try, being the operative word.

One of those Days

Today was an extremely strange day from an emotional standpoint. I have been trying to make sense of it for literally hours. To no avail. And trust me I don't have a spare couple hours to be pondering stuff that I will most likely not find answers to. Everything, in these current moments of our lives, is good. Really good.Zoey is good. Extremely good. The kids, really good. Mark, good too. It's all good. Except me. Not so good today. I have a blogger friend who has been in ,what I think, a very similar place as me. And me, ever great at dispensing advice but seldom taking it,doled out this bit of wisdom. I told her that she probably was suffering from a case of Post Traumatic Stress Syndrome. She has been doing an insanely fabulous job getting her precious daughter healthy for the last 11months,all the while trying to take care of a young son,a husband,a home and maybe herself thrown in there but most likely not. You hit a wall after awhile. Often a huge cement one. Survival mode is what carries you and once you rise from the ashes, that has become your life,the dust clears and,boom, that darn wall. Same thing happened to me last fall. We go through the crazy,unfathomable stuff that life has brought you. You survive it. Better days are strung along and look whats waiting for you ...... a wall. Makes you mad too. Because haven't you been waiting and praying for better days? Shouldn't you be eating up and savoring better days? So what's the deal? Ungrateful? Nope,definitely not. Unhappy? Maybe but ,why?What could you possibly be unhappy about when those better days that you begged,bartered and pleaded for, are right before your eyes. In fact your living those better days. Depressed a bit,most likely. Not depression in the sense of wanting to crawl back into bed or run away and hide.O.K., well, maybe that kind of depression a little. Maybe better days have lent themselves to reviewing the crappy days that you so wanted to go away. Maybe as you are living better days,like you have done before, maybe the fear of becoming too comfortable with the new look of your days,makes you feel like it's a big set up once again. Cynical most assuredly. Unfortunate by product of our Zoey way of life. All this then spirals into the guilt thing which always leads to the main deal. My faith.That everyday battle I do.Am I truly walking the walk as I so effortlessly talk? Probably not.Why though? I have so much to be humbled and grateful for. My daughter has survived things some thought she would not. My other children are living ,breathing testaments to the beauty and grace of God. My life is awesome. I am just tired. And changed. Today for the first time in a very long time, I did not like the person I have become. At least a part, of the person I have become. I have become very comfortable being alone. Cutting off those who love me and doing and living, day to day in my cocoon. Doing things all on my own.Needing no one. Thinking so conceitedly that I can take on every little thing,of everyday life and mange it all myself.It's comfortable my cocoon. It's cozy.But is comfortable and cozy always good? Maybe uncomfortable will force me to seek out God more. Ask Him for more help on days like this. Because not once today did I turn to Him and ask Him for help. If I claim that He is such a huge part of my life,why on a day like today would I not seek Him out? That darn faith thing again. Faith and walls. Adversaries of sorts. Faith keeps nudging me up and out of my comfort zone.But I'm sometimes not moving. Not an inch. I need to seek out certain aspects of my faith in order to do some healing. In order to find some peace. Peace with bitterness and resentments mostly. Peace with friendships that have changed, and relationships that have evolved, all because our lives have changed. Irreversibly and forever changed. It is that balance again between the good change and the bad change.But at the end of the day ,changed.So here I stand or sit,trying to figure where I go from here. Tonight. How do I rise above the ugliness of the day and look to tomorrow A day full of opportunity, to embrace the day just for the mere fact it is,just that, a new day.Can someone really suffer from Post Traumatic Stress Syndrome twice in one year? Or could it be that I never got out from under the first bout of it before the second wave hit.?Not sure what the deal is with me today. Just one of those days I suppose. Some might say I'm allowed. Some might say it's understandable. Some might say don't be so hard on yourself. I say,enough time spent wallowing or whatever you call what I just did. Turn off the computer,shut off the T.V,call it a day, go kiss my house full of miracles and thank Him even for a day like this and maybe most especially, for a day exactly like this.Thank you.

*Today we headed to the Huntington Library, which is not really a library but rather a former sprawling home of a very wealthy family. It houses some of the most spectacular art work from sculptures to tapestries to paintings. Beautiful gardens. Rose Gardens,Children's Gardens and the boys personal favorite, the Chinese Gardens. They were so not in the mood to pose for pictures,as you can tell.Jake was happy to hide behind Zoey but who could blame them as it was about 100 degrees. We walked a fair amount of distance to the Gardens,spent a good amount of time there and started heading back when Jake realized he forgot his much needed water. We trudged back and that's when we saw this really cool bug. Some type of Dragon Fly I think. Jake informed me that is was actually a "good thing" he forgot his water because other wise we would have missed seeing the really cool bug. That's my boy,always looking on the bright side!

A few more beach pictures!

"It's the heart that really matters in the end" line from Rob Thomas song "Little Wonders"

The days have been filled with activity of one sort or another the past several days. Just trying to cram in as much as we can for our out of towners. They are very low maintenance and we are all just enjoying each others company. A huge crowd to go places with but we manage. Everyone is fairly flexible. The kids hold up pretty well. In fact, at the end of the day you will probably find it's an adult crying rather then one of the kids! My brother in law Pat is just flying in today from Rome. Not Rome, Georgia or Rome, New York but Rome, Rome as in, the Vatican Rome. Yeah, poor guy has to travel to crummy places like that often on business. We really feel sorry for him. So he has missed some of the goings on up until this point. As well as Jess and Caitlin who have had work all day. Taylor has managed to join us on a few outings. All in all we have had a great time just reconnecting with everyone. The kids have a blast together and that's just pure joy to watch. As for Miss Zoey. She continues to amaze us with her go with the flow personality. Long days for such a tiny thing but she is no worse for the wear. She loves to be out and about. She is such a people person and loves to just take in all that goes on around her. She has missed most of her naps the last couple days and you would never know it. That smile on her face remains a constant. Her O.T. is on vacation for the next 2 weeks so that frees up 3 mornings a week for us. I work on things throughout the day with her so we should be fine. Her vision therapist comes once a week so at least we will have that and Christie works her fairly hard. Zoey is starting to lift her little bottom in the air when she's on her tummy more and more. You can tell she would love to push her body forward to get to something but hasn't quite figured out how to do it. Her left arm continues to be a little more "involved" in things. Christie and I were talking yesterday and we sure hope that her left will hand will become a "helping " hand and if we are really lucky, even more. With Zoey's determination, I am going with the latter choice. Zoey is still working on her teeth. Drooling like crazy. We still are at a count of 4 with at least 4 others on their way up. She is kissing like crazy and waving like mad and we think she is giving hugs. The jury is still out but more times then not, when you say, "Can I have a hug?," she leans her body into you. We'll keep you posted. We did have a cardiology appointment yesterday with Dr. Bedran. Who again, I must say, we love. The whole department is great. Other doctors, office staff, technicians all of them. Every time we are there, everyone is so glad to see Zoey. As much as I hate going ,it is so heart warming to see how much people love her. They comment on how she's grown, her pretty hair, her cute smile. They just love her. And yesterday she turned on the charm for them all. Our NICU visit too. Smiles, waves, kisses. She played shy and coy. She was just darling. You can just see it in all of their faces how thrilled they are to see Zoey in such a good place. O.K., back to the appointment. Well, it looks like her little heart, which wasn't so little for awhile, is back to being little again! Not quite back to where it was after surgery but at least it's going in the right direction. Her heart enlargement is a common side effect of ACTH and it was always assumed it would return to it's prior state but assume was the key word with Zoey. With her we never, ever assume. Anything. Dr. Bedran's exact words were, she thinks we were out of the woods. My exact words to her were, the reason I loved her was that she never let on we were even IN the woods to begin with! Dr. Bedran never guesses, surmises, or projects. She just lives in the moment of where a patient is right then until we need to kick it up a notch. Let's face it. Most of us with medically fragile kids know the deal anyway. She knew Zoey was in the woods. I knew Zoey was in the woods. No words needed to be exchanged and in her words ........ "We were in the woods dropping bread crumbs, finding our way back" Love that woman. I truly do. So Zoey's perfect heart repair that she received last August the 13th is on it's way back to that state. We are sure happy for that. Another obstacle conquered by the brave and mighty little one, Zoey.

*Pictures from the beach: Zoey giving Taylor love, Zoey kicking back enjoying the sun (looking a little like an old woman with no teeth!), Jake surfing, kids digging for sand crabs, (notice Jake in the back), my niece Sophie the mermaid etc. and of course daddy and his girl!

Zoey has a new trick!

Things around here have been fairly uneventful. Which is nice,in so many ways. Our day to day lives are packed full of busyness but it is so nice to have uneventful busyness opposed to eventful Zoey busyness, if you know what I mean. Zoey continues to do really well. Each day that she remains seizure free is another day we remind ourselves of how lucky we are, how lucky she is. Each day she remains seizure free is another day that allows her to progress forward. An opportunity to make up for lost time. Each day seems to hold at least one new little thing Zoey masters or tries to master. She is in a constant state of engaging in her surroundings and we are often thankful that our house is so full of activity because it leaves Zoey with never ending stimulation. There certainly won't be a lack of stimulation around here over the next week, for sure. My sister and her family are here visiting from Houston and our home will be over flowing with people coming and going. We are going to be on the go daily so it's a good thing Zoey is a super traveler because travel is the name of the game this week. Mark is even taking the majority of the week off. Should be packed full of fun stuff. Tonight was dinner here. Crazy does not even begin to describe the environment. But crazy in a great way. Memory making crazy. We head to Malibu in the morning for our Monday play date with Jessica and Liam. Only one more of those left and her job is over for the summer. Caitlin works all week so she won't be able to join in on much of the fun. Wish she could. Taylor can do some things during the day if we don't wander far but other than that, she is "In 'N Out" bound almost daily. That girl continues to work her little butt off! Zoey does have a few Dr.'s appointments thrown in this week. Wednesday is a cardiology appointment and we sure are praying to see some improvement, even the slightest bit, with her Hypertrophic Cardiomyopathy, enlarged muscles of her heart. Please pray for SOME improvement because I so don't want her to have to add another medication to her repertoire. She also has a neurology appointment on Friday. Funny, I use to become so edgy the week leading up to appointments like these but I have been graced by God's peace as of late where these kind of days are concerned and I know that no amount of worry will change the outcomes, so I file it as "Not helpful" and move on. Don't get me wrong, I don't think I will ever get use to the fact that we are regulars at Children's Hospital. Known and recognized by more people than I care to think about. Now, on to Zoey's new trick. Zoey can wave Hi ! She really waves hi! Like crazy in fact. She has been doing it for awhile but we have just been saying, is she, isn't she? But over the last few days it is so a "hi" wave. I have been taking Zoey to a mirror for forever now and when we are there I would say, see the baby, say hi to the baby and wave her arm for her. She would smile but not much else. Then all the sudden, oh my gosh, the child waves at the mirror, waves at her siblings, waved to people at church like mad! She was cracking us and everyone else up. Her little arm was practically going to fall off! We are trying to capture it on video and we will post it as soon as we are able. These are the moments that we savor and cherish and are able to pause, give thanks to God and count ourselves blessed and lucky once again.

*First picture is Zoey, absolutely wiped out after no nap but manged to sit for another photo op with my niece Sophie, my niece Shannon and my nephew Zach. Photo two: Zoey and her Uncle Luke prior to "I have had enough of photo's, please put me to bed, now."

"Hope is the thing with feathers,that perches in the soul~and sings the tune without words and never stops...at all"

Yesterday Zoey had a Well Baby Visit.Yes ,A Well Baby Visit. That term is not often heard in these parts. In fact up until yesterday she has never even had a Well Baby Visit.Another Zoey first. For the last 16 months any thing that goes on in these type visits were instead done during a visit for some other medical issue, crisis or calamity. Kinda, lets throw in those immunizations she's behind on while your here.So yesterday was kinda cool. Felt kinda regular and dare I say ..normal. There were no immediate medical issue to discuss or go over. We touched on the main things.G-tube feedings and feeding issues.. Heart condition.Left side stroke deficit/disregard. Where we were at with those. Blood disorder. Check. Seizure control stuff followed by a brief talk on Hemispherectomies. Not exactly typical topics for most others but for us ...... normal.Very brief. Very normal. Nurse did her weight and height. No Down syndrome chart readily available. Yes, children with Down syndrome do have their own growth charts. Zoey is, drum roll please ...... 3rd percentile on the typical chart. She's on the chart. When I came home and pulled out HER chart,even better news. Length at 29 inches..... 50th percentile and weight at 16 lbs 13 oz (holy cow can you believe it!),her weight is in the 25 th percentile. Awesome for my little wonder who up until now has taken almost a year to put on 3 lbs. Thank goodness for that g-tube. She received two immunizations with two more to follow in a couple of weeks. We talked about her developmental milestones ever so briefly also and that was that. As I left he said,"See her in 3 months". 3 months,I hope to hold him to that.So, Zoey and I left with smiles. When I got home I took out the papers the nurse had handed me that had all her measurements. I hadn't looked them over while I was there. I actually only ended up spending a few moments with them at home. They basically went over the in's and out's of where your child SHOULD be at 12-18 months. Yeah, "should", being the operative word. First,that's if you have a typical child. Even that ,take with a grain of salt.Then there is the fact that your child has Down syndrome and numerous medical issues, that puts them out of even "typical children with Down syndrome"(not sure that's even an appropriate term,pretty sure it's not.) We try to not compare Zoey to a typical child that is her age. We try to not compare her to another child with Down syndrome ,that is her age.We try not to compare,period. The only time it is a stark reality is when she is side by side with a child in either of those groups. Then it's , okay, I guess she has a long way to go. But then it is followed immediately by ...... but look how far she's COME! Her road is harder and longer then many other children who fall within those groupings. We also try to remind ourselves that her road is also easier then some in those two groupings as well. It is her road to travel. Only hers. We will never know what bearing her stroke and Infantile Spasms or for that matter the fact she has Down syndrome, will play in her cognitive development. But does it matter? Not one bit. We do not spend any time with those thoughts. Not helpful and more important,totally ,UNimportant. Yes there is nature and nurture. No control on the nature part. However, total control on the nurture part. We have enveloped Zoey in all that we can in the nurture department and we intend to keep that up. Whether it is ot,pt,her vision, signing,any of that, we just push full speed ahead. Some times there is not enough time in the day to spend on the "therapy" type things but that's where the one area that we think we have down pat comes in. That's the unconditional love we all have for Zoey. She may have gotten the short end of the stick in a number of departments but what she has never lacked in,is the love department. I don't think it's any coincidence that Zoey's first real learned action was a kiss. Maybe she can't sit and crawl or talk or feed herself or take objects in and out of containers but she sure can kiss ..... a lot. Zoey and I were sitting on the couch yesterday "talking",Caitlin came home from work.She sat down with us and without asking her or saying the word,Zoey leaned right over and kissed Caitlin. Does it get any better than that? Could we possibly ask for any more? Well, actually maybe a moratorium on the major illnesses/disorders. When Zoey's OT and her case worker from Early Intervention got together to go over her "plan" for the up coming year,Jacquie,her OT was asked for goals by her 2nd birthday. Jacquie thought and replied,give hugs and blow kisses. I am not sure she added anything else. Why? Because she knows me. She knows us. It is absolutely not about us shooting "low" for Zoey,it is about where we place the importance of what we want Zoey's life to be. Sure we can't wait for her to sit, maybe crawl,hopefully walk. Even talk.We absolutely want those things for her. We have by no stretch of the imagination given up hope that those things aren't in her future.She continues to do it in Zoey time. In true Zoey fashion. With all that said, there is something Mark and I, our family and the doctors are all on the same page about and that is in regard to her seizure disorder. We pray that we can keep her seizures under control on the regiment we are currently on. We would love to think and continue to pray she can stay the way she is ,progressing forward, on her current medication. But, and it's a a really big but,if her seizures reappear and cannot be controlled on the only medication that has touched them thus far,then we would proceed with the Hemispherectomy. If some of you who have just recently found us,were not aware, Zoey spent a few days at UCLA to under go testing to determine whether or not she was a candidate for a radical surgery that would require the removal of her entire damaged right hemisphere of her brain. Crazy, I know,but potentially necessary. We are grateful to even have the option, as there are many children who suffer from various seizure disorders, that do not have such an option. We feel,believe it or not,lucky to have such an option. We know for sure that we can't have Zoey back slide to where she was 2 short months a go. She was at an absolute stand still. She had regressed. She had lost her light and her smile. We will not have her or us for that matter, return to that place. We have made peace with knowing the risks and weighing them against it's benefits. There is no question in our minds that that is the direction we would go in. For right now we don't have to head that way. We stay on the present course and we thank God daily for the miracles He has worked through Zoey.A mighty fighter our Zoey. She continues to amaze us. We continue to be thankful and look to the future with hope. We would like to think that one of the many mark's that Zoey has already made in this world, is the awe inspiring gift of hope.

*I know you probably have grown tired of seeing Zoey in various sleeping positions but ..... this is a first,again. She has never slept on her tummy,ever. Photo two is Zoey in part of her "therapy outfit". A REALLY tight one piece number that keep everything in. We all could use something like this, at least I could! Next picture is just another thing she has started doing that I love. Now that she likes her tummy, she peers over the bumpers to find me when I am getting ready in the bathroom. Again, not a big deal for say,a typical 5 month old to be doing but for a 16 month old who has struggled with head control,neck strength and tummy time,well,huge. Final picture I took of the boys and our two really sweet neighbor girls having a picnic out front. Innocent,simple, moments I love.

Going with the flow ....

I had always considered my faith to be fairly strong. My belief in God and the Son He gave and sacrificed for us, was the corner stone by which I raised my family and lived my life. Or at least tried to. I failed often and fell short of my own expectations and most certainly His. But the really cool thing was I knew He understood and I knew He forgave. Then came Zoey. That faith that I believed to be so strong, so impenetrable,quickly started springing leaks. One minute I was cursing Him and the next minute I was praying like crazy. Confused to say the least. I disappointed myself by my actions and my words. I know I disappointed my girls. I tried to hide my doubt in this "bigger plan" thing but there were often moments that I just could not hold it in. I remember vividly wanting to take down my cross collection that we have on one of our walls. I remember vividly telling Mark, "What if this is just one big joke. One gigantic hoax. I remember Mark vividly standing there with his mouth gaping wide open. What does a person begin to say to someone that says something like that? I remember sitting in the NICU with Zoey, rocking endlessly, ticked off at the world. A Chaplin happened to peek his head in and I quickly asked, "Did my husband send you?'' He sat. We talked. For a long time. God's grace replaced my resentment. The Chaplin stood and said, "Your husband didn't send me but someone else did." Thank you Chaplin Steve. You changed me that day. There were more moments of doubt that followed over the next year. Many more. But that day when Chaplin Steve allowed me to vent and scream and doubt, he didn't judge. He said it's o.k. God can take it. He expects it. In fact, if Steve had found me in that rocker, with a smile on my face just singing the praises of our God, then he really would have been worried about me. Instead he found a mom. Grappling with the place that she had found herself, her family, her child. Seeking answers. Questioning purpose. Normal. Completely normal. My faith journey continues today. Constantly seeking peace.Peace for a journey that has often felt so unsettling. So uncertain. It all has circled back to control. Faith and control. Where there is true faith then there can no longer be the desire and need to have the control. I was an absolute control freak before Zoey. I felt if I didn't wield the control, then I would lose control. Something had to give and the easiest has been the control. Losing faith wasn't an option. How sad would it have been if an additional casualty of this journey had been the total lose of my faith. It has been a battle I have waged on and off for a year and a half. Faith usually wins. Most of the time. Questions linger. They always will. One day I hope to have a sit down with God and clear up a few things that have weighed heavy on my heart. Parts of this life's journey that have been so difficult to digest, not only as they pertain to me and my family but for countless others just like us. My brother once recommended a book called "Letters From a Skeptic." Haven't found my way to a book store yet but maybe one day. Maybe one day it will help with the questions. For now our days continue. One after another. I cherish them more then I use to. I pause at the simple things, more then I use to. I give thanks for my blessings more then I use to and seek forgiveness when I take them for granted. Our moments are sweeter because my faith has been strengthened. Yet another gift of Zoey's grace.

"As faith is strengthened,you will find that there is no longer the need to have a sense of control, that things will flow as they will and you will flow with them, to your great delight and benefit." Emmanuel

* I love finding Zoey in this sleeping position. It is so strange to not find her on her back! This picture is so deceiving because it makes her look so big and she is so ....... not big!

Two years Ago .....

Two years ago today, I found out I was pregnant with Zoey. I remember sitting in my car, stick in hand,looking in disbelief. Yes, my car. It was my second pregnancy that I basically tested on the road.I traveled to our local drug store,urine in hand, or rather bottle, purchased the test, performed the test and sat wide eyed with 2 bold lines staring straight back at me. Why my car? I have no idea. Maybe because if I had to scream ,no one would have heard me. Joe,our fifth, was the first time I had gone through this weird parking lot ritual . Not truly unexpected the first time,so, not as much of a shock. Zoey,well,she was the second time and yes much more shock value with that one. I think"my advanced maternal age" had a great deal to do with the shock. After Mark and I shared the news with a few people during those first couple days,I think the reality settled in and we began to plan for the arrival of child number six.We allowed ourselves to become excited and looked forward to welcoming another little one into our lives.My pregnancy was very "if'y" those first couple weeks and once we got out of the danger zone and I, past some horrendous morning sickness, we felt like it was going to be smooth sailing from then until delivery.At least we hoped. By my 20 week ultrasound the smooth sailing quickly turned into a rough, wavy, tumultuous,voyage. Quite honestly, the journey up until now has resembled much of the same.The past two years have passed quickly in some respects and not quick enough in many others. Some moments are as clear and as vivid as if they were part of yesterday's moments, while others feel as if they were a lifetime ago. In some ways there is not a thing I would change about this road traveled but in other ways when I stop and think about what we have had to watch Zoey endure, it is often too much to even wrap our heads around ,let alone our hearts. My other children have had to see first hand the fragility of life and at their young ages ,have had to entertain the real possibility of having to say good bye to a little life they have come to love heart and soul. That has been beyond my comprehension.Having to watch all of my children pass through this dark time has been more then this mother has been able to handle at more times then I wish to recall. Then, there is the my faith. Complex and confusing to say the least. Strong at times and so weak at others. Essentially non existent in some moments. Those moments took me by surprise. Those moments left me ashamed. Those moments found me full of more questions than answers. Two years later I am not so sure that I still don't have more questions than answers,but that same faith has grown and evolved. I am trying daily to balance my faithfulness to God and His plan with my humanness and my ties to this Earthly journey. Two years ago how could we have ever imagined the things that were to come. Would we have transcended and survived had we known then, what we know now? Two years ago, as this little miracle grew inside me, her path already determined,something deep within me,whispered and told me that this was to be different. Different ...... quite the understatement. Zoey has brought more to our lives then we could ever,ever convey to anyone. We are, who we are today because of her.She is who we have been waiting for all our lives, to pull us all together, into the strong family you see before you. Two years ago I was filled with such an over whelming sense of uncertainty . Today the uncertainty continues to creep in but doesn't consume.Two years ago, for the first time since I began having children,I questioned my ability to be a good mother to all of my children. Questioned my ability to give to each one of them ,all that they needed. Today, I feel confident and capable and I hope they have as much trust in me ,as I am beginning to have in myself. The moment I took that test two years ago ,I knew life was about to change. Two years ago we found out that a child would be coming to us and not because of some innate strengths we possessed but rather to show us our shortcomings,our weaknesses. She has managed in her 16 months to teach us and show us the way.Continually pushing us forward to dig deep and persevere.She is in a constant state of digging deep and persevering. Look how far we have all come in two years Miss Zoey Grace. Thank you my love, for lighting and leading the way.

*Zoey in her new car seat and Mark and some of the kids at the Dodger Game

Zoo Day

We headed to the Santa Barbara Zoo today,as planned. Turned out to be a beautiful day. The weather was perfect. Helps that on the clear days, the ocean can be viewed perfectly, as it is barely 1/4 mile away from the Zoo. Not bad on the eyes and there is nothing like the smell of fresh ocean air. We are spoiled to live where we do and I am really trying to appreciate the fact, that to be able to be in the sunshine ,most all year long,is truly a blessing. Our drive is breathtaking as we head up the coast for the 45 minute drive.Most of the drive it is only a guard rail that separates you and the Pacific Ocean. I have made the drive hundreds of times and I still don't think I spend enough time taking in the beauty. The zoo is the perfect size for little walking legs. We have had a family membership,on and off for almost 19 years. Well worth it. They are in a state of construction right now. Remodeling exhibits and building new ones but most all of the animal are still there for viewing. The kids run aimlessly from one animal to the next, sometimes pausing for just a moment till it's full speed ahead to the next exhibit. Sometimes I wonder if they have even seen the animal that is housed behind whatever window,fencing or water hole they have just flown by. No matter. They are just happy to be hanging out,enjoying each other,for the most part.My two nieces Sydney,who is 17 and Sophie who is 8, came with us. The kids crack each other up and it's just joyous to watch them all together. Everyone held up fairly well. Everyone except .... my sandal. Yep, 15 minutes in, my flip flop popped. No replacement of any kind in the gift shop and it was impossible to try and walk. Little alternative, as I certainly couldn't walk around barefoot at the zoo. Yuck. So I had two teeny, tiny strips of leather that I had to tie together,cram my Fred Flinstone feet back in and make the rounds. Boy was I glad to get to the car and ditch those things. Zoey did great. Her teeth are really bothering her but she is plowing through her days. She really isn't able to take in what the zoo is all about yet but I hope one day soon she will be running aimlessly right along side the rest of the kids. We closed the place down at 5pm. Only minor meltdowns in the gift shop. But all resolved quickly. We headed out, hit no traffic and made excellent time home. The boys showered ,Zoey tubbied,, they ate and we watched School of Rock. Love that movie.A few choice words here and there. Joe was clueless and Jake assured me each time one was said, "Don't worry mom,won't use that one either". He's not the one I am worried about. Joe will be the one that finds me screening caller ID's from classmates parents one day! Little ones were passed out by 8:30 and the day was dubbed a success. My late nights seem to be catching up with me. so at 11:50 I am signing off. Another day ends and rolls right into another. Always grateful for that. Most of the time,depending on where life has found us.Will it be a day that finds me wanting to pull the covers up over my head and ignore the world around me or will I roll out with ease ready to face the day? Doesn't really matter which one it is, in the end,I'll be getting up regardless. Tonight I leave you with, what else ..... a quote! It was on the fence when we were taking the train ride. It is from. Dr. Jane Goodall, "Every individual matters. Every individual has a role to play. Every individual makes a difference." Simply and eloquently said,don't you think?

Best Laid Plans

Before I start, I think I better explain the pictures. Especially the first. Picture number one ..... Zoey's Mickey Button, aka, g-tube. Picture number two ..... if you are going to put your babies belly, in all it's glory,for the entire world to see, you best follow it with another, one showing her darling face and sweet smile. Now, the reason for the pictures. The day was supposed to, with suppose being the operative word, be our day at the beach. The California coastline and the unpredictable marine layer had alternative plans. Overcast. Extremely overcast. The boys were slightly disappointed but handled it well. Better than I expected. Seeing that it is not exactly easy to explain barometric pressure and the such when I barely understand it myself. We moved on quickly from the initial disappointment and I was able to appease them with a day at our good friend Michelle's pool. My day was all set to go. Lunch's and bags were packed already for what was supposed, again suppose, to be beach day. Pool day was going to be just as good. It turned out to be great. It was the getting there that was, well, less then great. Just as we were about to walk out he door I notice Zoey had a big wet spot soaked all the way through her onesie. Oh, boy. She had been hanging out on the carpet just rolling around and there was no other explanation except that it had come from her g-tube. On Marks birthday we had had a similar incident. I refilled the balloon and knew if it happened again, then it was time to switch out the entire button. You can click on Mickey button to learn more about it if you want but here's the long and short of it. This button goes directly into Zoey's tummy and supplies her with her nutrition and any medication she needs. It is held in place with a silicone balloon that you inflate with water. As time goes by, usually 5 months for Zoey, it begins to break down and needs to be replaced. Here's where I come in. Not my favorite thing to do. It ranks right up there with giving my daughter 2 ACTH shots a day, for 7 weeks in her little thighs. But I do it. Because I have to. Changing the button is a process. First of all, an empty tummy helps. Doing it with a full one does not bode well, for obvious reasons. When a g-tube is removed, there is just a hole, or stoma as it's called, right straight into the stomach. Therefore, empty is good. It's not really time consuming but I usually have to do a little mental preparing as well as the physical prep. Lay out the "stuff". Make sure things are close at hand. Try and distract little Miss Houdini or Lady Octopus as I call her lately. Then there's the mental end of it. Mainly I am always afraid I might hurt her. I know I won't. I just worry I will. I give her a little talk. Tell her I'm sorry. Say I hate doing it but a Momma's got to do what a Momma's got to do. I begin the deal and right as I have begun, no turning back, little men fly into the room screaming for a referee for their lego dispute. Try to ask, more like "forcefully request", they leave immediately or, or,or.....something bad is going to happen. I couldn't think of a threat quick enough. Direct my attention back to the "wiggle worm" and fast as I can, swap things out. Not before spilling the entire water bottle I had precariously placed,opened ,on my bed. I only needed 5cc, a minuscule amount, Lord knows why I had the entire bottle. Zoey begins to cry as the cold water soaks directly underneath her practically naked little body. Swoop her up, dry her off, tell her again I am sorry and move on. Dressed her, checked out my handy work to see if it looks alright. It does. Give it a couple days and it won't be the case. It ALWAYS becomes red, inflamed and yucky after I swap it out. Hate that part of it too. But what can we do. She has it. She needs it. It stays. So after a minor delay we headed to the pool. Enjoyed some sun. The boys forgot about the beach and swam like crazy. Tuckered them out and passed out by 7:30. That was the day in a nut shell. A couple little extra, unexpected twists. Mostly minor. All fixable.Best laid plans sometimes have plans of there own.If the last year has taught me anything, it is just to go with what ever you get regardless of your already established plans.Plans are just that,plans. With life on it's own agenda. Hope I didn't make anyone queasy as they checked in on us this morning, possibly coffee and breakfast at hand. Some might even have found it interesting, as I certainly had no idea about g-tube's before Zoey came into our lives. Now, well, the number of thing I have become versed in, is beyond all comprehension. Sometimes I can't even believe the things that at one time would have absolutely seemed foreign, now are common place. In fact, there have been a number of occasions when I have been asked if I had a medical background. My answer, yes, just not in the way they are thinking. Zoey continues to take it all in stride. She is a little fussy today. Teeth remain the culprit. Count so far of teeth: 2 on bottom all the way up. 2 on top through the gums. Two on other sides of top, trying to find their way out. 12 month molars,major bumps on gums! Who could blame her for being cranky. We ordered her Theratog today. This is going to really help with her tone and core muscle strengthening. I also bought her a really cool carrier called an Ergo . I have tried the Baby Bjorn and the Moby and neither one have been comfortable for either of us. This is new and looks like it will be great. A friend of mine raved about it. Tomorrow we intend to try it.I think we may undertake the zoo. That's all I've got for now. Thank you as always for stopping in, checking on us and for those who I managed to have once again kept your attention until the end of the post, I truly appreciate it. And always, thank you for your prayers.

When God is about to do something great,He starts with a difficulty.When He is about to do something truly magnificent He starts with an impossibility

Okay, I figure I better lighten the posts a bit, as I am very certain I could be scaring some of you off. I do not mean to lay such heavy stuff down on peoples days when really my ultimate goal has been to lift others up, light up their world and show them all the miraculous things that can and do happen when a child such as Zoey comes into your lives.The path our lives have taken in the last year has and does illicit such a wide array of feelings and emotions and I often don't know myself ,what direction they may go from day to day or even moment to moment. You see, when I start writing at the end of the day ,what ever has been the most dominate feeling weighing in on my heart is what I blog about. And sometimes it is heavy. Writing allows me to get it out, so it doesn't eat me up. So my apologies if you come our way for some bright light and sunshine and instead I darken your doorstep and down pour on your day. But I do try to be honest as to where I'm at and sometimes it's not all that pretty. I thank you for your patience, your understanding and your support as I continue to navigate my way through our ever changing world. So what is going on in our little world today? Well, the cleaning fairy forgot to do a fly by and I was left to pick up her slack. Unreliable those fairies. She must be friends with the cooking fairy too. Probably goes without saying but I was in fact cleaning all day today. Cleaning so we can head to the beach tomorrow. Should be another fun filled day in Carpinteria. Yesterday the boys and I, along with Mark who was given an extra day off because he worked the 4th,headed to Malibu to see Jessica and the little boy Liam she takes care of. We went last Monday also and we loved just hanging out with Jess now that we don't see her as much. Surreal to watch a child of yours caring for another little person and the ease at which they do it. Jess is only a year younger than I was when I had her and she certainly knows far more about taking care of a child then I did.I was so proud as I sat watching her.She of course thought it was ridiculous for me to comment on what a great job she does with him because she said it is no different then taking care of one of her younger siblings. But it was different and I was proud. Caitlin is busy working and franticly getting ready to move to San Diego. She is so excited, as I am for her but I am really sad for me.I selfishly would love if my children stayed forever. I will miss the laughter and the life Caitlin brings to this house. Caitlin's humor and way she attacks life is contagious.The transition will be difficult for us all. The boys will miss her tremendously as she,them. And as far as Zoey ...... that will be hardest for Caitlin. She began last year at Pepperdine with Jess but came home almost as quickly as she left. After all the changes that came with Zoey's birth she just was not ready to be away. Caitlin adores Zoey and loves her to no end. Watching Caitlin say goodbye to the little ones will be beyond difficult. Poor Taylor, left with two old people in an extremely crazy household. I feel we will see her less often between school, work and boyfriend Brandon. It will be her senior year,which is mind boggling, so she will be more than occupied with her full plate and sending out college applications. The boys are still getting up at o'dark thirty for their swimming lessons and they are certainly becoming little fishies. Jake is loving it and he was the one who was apprehensive of the water,especially the deep end. Not now. He loves the water. Wants to swim the entire summer and wants to go to the Olympics. Lofty dreams my little man. Although, as I was tucking in his very tired body this evening he said, " Sometimes I can't wait to get up to go to swimming lessons and sometimes I just want to sleep in" Oh, the conflict with emotions that come with any age! The Princess ....... well, let's start with the picture I took this morning. I had laid her down and had to sneak back in to get something and this is how I found her. To most, you might say, cute picture but why ? Seeing her in this position well, it almost made me cry. When you have only and I mean only,seen your child sleep on their back for literally 16 months,it takes you aback to find them any other way. She looked so darn cute. I am marveling in her every move now a days.I cherish the tiny things and I pause and take in what at one time I would have taken for granted.Every day brings new "firsts". She is starting to move her left arm and hand more and more. Again it is so strange and wonderful to see her doing it. She is working super hard at her therapy. Loving her tummy and the freedom it brings. I find her turned every which way on the floor. Fun stuff. She is doing really well with Christy, her vision therapist from Junior Blind of America. She is really good and really good with Zoey. Christy pushes her,especially where her left hand is concerned and Zoey allows and tolerates it almost the entire hour session. We again have lucked out with another member of Team Zoey. It has made all the difference knowing you have so many people around you that have Zoey's best interest at heart and that they love her too, which really helps.She continues to amaze us and we think she is magnificent in every single way.
*If you couldn't tell,I am into quotes lately. My post heading quote comes from Armin Gesswin and I thought it was so appropriate for Zoey and all children like her that have begun their little lives facing the impossible.

"Strength does not come from physical capacity. It comes from an indomitable will."Gandhi

Today I met yet again, an amazing example of courage and resiliency. A face that radiated pure joy, even in the face of an uncertain future. A face of a young woman who should, by all accounts, be planning her college bound future but instead is fighting cancer. A malignant brain tumor to be exact. Her name is Breanna and I will not soon forget this tiny but mighty package. All 60 pounds of her. This 18 year old, feisty girl captivated my attention throughout church today. I stood in awe of her and her family's strength and their love that shone so brightly in even the most subtle ways. Our paths have crossed because, Breanna and Zoey are both "going " to Australia together. Well, not ACTUALLY going, but yes, their presence will be seen and felt in the " land down under" come next week. You see we were honored to be asked if it was alright if the youth and chaperones of our parish could carry a picture of Zoey as they traveled to experience World Youth Day. World Youth Day is the largest contingency of catholic youth who will converge together for one purpose, to learn more about their faith and experience the love of God. It is expected that over 125,000 international visitors will come together in Sydney, Australia. More than the 2004 Olympics. Pretty darn amazing. Pretty darn amazing that they thought of our Zoey and felt compelled to "carry" her with them as they made this spiritual journey. Breanna's picture will go as well and to be "traveling" along side her, well, we are beyond privileged. Church today was very emotional. Yes because of Zoey and the fact that so many people have embraced her as their own but also the sheer reality once again of the battles so many others endure and how I so wish that burden could be lifted some how. If our prayer and our faithfulness to God and His plan is what it takes, then so be it. But today I felt so compelled to speak of the many others like Zoey that have crossed my path and captured my heart. I wanted to say: don't forget, Sam and Parker and Rhett and Chelsea and Sheena and Roy and Reagan and Dawson and Jude and Matthew and Patrick and Kennedy and Presley and Ivey and Gavin and on and on and on. For every Zoey there is countless others. So I spoke their names in my heart and to my God and I asked that they too be prayed for and remembered for their strength and their courage in the face of their own sometimes uncertain journeys. All of these children and their indomitable spirit, inspire us and carry us and force us to step outside our individual boxes and be ever mindful of the the great big and sometimes unfair world out there. So today I again found myself in that weird introspective, over analytical, trying to make sense, of life's big picture,place. When do you think I will get it that I more than likely will never see that picture with the clarity I want? It will probably remain slightly fuzzy with only brief moments of transparency. Our day was full. Matt, Jessica's boyfriend, turned 22 and we celebrated that milestone along side him. The past few days packed with moments and memories. Zoey has now hit 8 nights in a row with sleeping straight through, 10-11 hours. Sheer bliss. Seizures, well we have lost count on the number of days that those have been under control and boy is it nice to not be counting seizures and watching for movements and twitches. More tummy time and for a child who NEVER was on her tummy or rather never ever stayed on her tummy till a week ago, well that is her position of choice the majority of the time. Which is so wonderful for her gaining core strength and head control. Her physical development remains at that of about a 4-5 month old. At 16 months of age, yes quite behind but when we start subtracting for Down syndrome issues(low muscle tone), heart issues, blood issues, stroke issues and most significantly, seizure issues, well, we think all in all she is amazing. She will get there in her own time. She remains happy and full of kisses and for now we could not ask for anything more.

*Birthday boy Matt and his girl,Birthday boy Mark and his girl, Zoey in her position of choice,the kids minus Taylor who AGAIN is working a 42 hour week,she is a hard worker and never,ever complains.