Friday, April 4, 2014

Another Birthday ...

Yep.  Another one.  This beauty.  Jessica Leigh.

27 years ago.  5:25 EST to be exact.  She arrived sleeping.  Just like that picture.  She cried a bit and then did not open her eyes for 3 days. Totally true.  Seems too much anesthesia crossed over the placenta from my c-section. Oops.  She was super mellow.  And smiled that smile from an early age and has remained mellow and smiley ever since.  She was born at exactly the right time in my life.  Not in the timing some thought defined perfect, but for me, she saved me from myself.  My first true love.

So tonight we gather as a family, a large and getting larger by the day, family and celebrate the gift of  life.  Another year.  And we do so with gratitude and thanks.

The rest of the weekend will be filled.  To the brim.  Soccer with Joe.

  And a 5k on Sunday with the boys.  Jake has been really into training and its been so neat to see him head out the door to get a few miles in.  Jake has never been that into sports.  He is so gentle that anything that requires aggressiveness, just goes against his nature.  He's a great swimmer though and now he said he thinks he would like to run cross-country in high school.  Which I think he would love.

 Not going to lie.  I am so hoping to escape for a little while somewhere between the chaos this weekend.  A movie by myself I am thinking.  I have been dying to see "The Grand Budapest Hotel".  Perhaps a long overdue pedicure.  Maybe a yoga class or dare I say, two.  Some respite.  Brief moments to take a deep breath and recharge after several exhausting  weeks.  Truth be told, I need more then a few hours but I will take what I can get and dream about a longer getaway.  Which hopefully will come in September when a group of my girlfriends and I are planning on going away for my 50th.  And the way time is flying these days, fall will be here in no time.

Have a beautiful weekend everyone.  I for one am glad that the weekend has arrived.  Oh wait ...


Wednesday, April 2, 2014

Upsee ...

I want this for Zoey.  I want it badly.  And hopefully, we can make it happen.

It think the possibilities and potential of this are endless for our girl.  I tuned into the webinar yesterday watched clips and listened to data, research and practical application in other children's lives and was convinced further of what this product would mean to Zoey and how she makes her way through this life.

The positive response to the Upsee has been overwhelming.  So much so that when they go on sale on April the 7th, they have let us know that it will be 12 weeks until it arrives at our doorstep.  Kinda of a bummer.  I wanted it like ... yesterday.  As I told someone today, patience has never been one of my virtues.

Necessity being the mother of invention is no better defined then by reading about how this ingenious product came to be. The Upsee was the vision of Debby Elnatan who wanted to find a way for her son Rotem, who was born with Cerebral Palsy, to explore the world on his own two feet.  She spent years using very primitive prototypes on her own, with Rotem, tweaking and improving, until her older son encouraged her to seek out help with the design.  And so, the Upsee was born.  And wow, I am totally inspired by her and her sons tenacity.  I think her vision is going to be such a gift to children like Zoey.

The price tag is not cheap.  $489.00.  Which puts it unfortunately beyond the reach of many, many families.  Its not exactly easy for us but I think it is doable. There is nothing we would not do for Zoey.  No sacrifice we would not make.  And we think this harness will be worth every penny.

Stay tuned for updates and I am hoping that if we are able to get an order in Monday, I will be able to post pictures and videos of her in action in a few months.

It looks as if I have gone nearly 2 weeks since posting.  Not my intention when I decided to come back to this space but unfortunately, Casa Needham has been CRAZY.  With a husband working into the wee hours of the morning and then getting up first thing in the morning, and doing it all over again, for the last month, when I sit myself down after 10 pm nightly, I just have not been drawn to writing.  However, I have been drawn to this.

  I adore a super hot bubble bath, accompanied by my addiction.  Cadbury chocolate eggs.  Not the kind with the gross, gooey filling.  The ones that are all chocolate with a candy shell.  And make no mistake, it is an addiction.  I have gone through 4 bags of these, solo, since they hit the stores.  That's a problem.

  And you wonder why I run?


Friday, March 21, 2014

WDSD 2014 ...

World Down syndrome Day that would be. A day in the year set aside to stop and pause.  And unite.  Celebrating the magic of that extra chromosome.  March 21st.  3rd month in the calendar year and the 21st day of the month.  Representing the triplication of the 21st chromosome found in people who have Down syndrome.  Just another day really.  We live the magic everyday.  As well as the reality of  some of the difficulties that came with that diagnosis.  But to appreciate anything in its entirety, one must recognize and acknowledge the hardships that exists alongside the joy.  Or at least that is something I find I need to do.

My little sidekick.  My buddy.  My heart.  She has been one of the single greatest gifts to me in this life.  I do consider myself to be one of the lucky few.

And if you have the 5 minutes, would you PLEASE  watch this video?  I promise you will not be disappointed.  I found the entire piece to be amazing.  I found these kids to BE absolutely AMAZING.

Thursday, March 20, 2014

“If people did not love one another, I really don't see what use there would be in having any spring.” ― Victor Hugo, Les Misérables

The calendar reminded us that today is the first day of spring.  For those of us living here in Southern California, I know our seasons are not as distinct as they are in other places of the country but we too see new flowers begin to take bloom, the grass is bit greener now that there has been some rain and there is that undeniable vibe to our days that speaks to a change of season.  A desire to get outside more.  Take advantage of the extended daylight hours and to look forward to the future with renewed hope.

In our home, spring means birthday celebrations.  In fact we will have 4 birthdays to celebrate in under a months time.  3 have already passed.  And for me, another reminder of how quickly time has marched on.  Beautifully so in many ways.

The girl wonder welcomed her 7th year.  We had a rather small little gathering and since the Oscars were that day, that's the theme that we went for and Zoey enjoyed every, single moment.  Including the entire awards show.


And for her birthday, we thought it was time for a new carseat.  She didn't so much outgrow her old one, rather wore it out. Which is true with many of Zoey's things.  It's that slow and steady thing, don't you know?

Next up was Caitlin.  My beautiful second born. Talk about time flying.

Rounding out the March birthdays was Jake Matthew.  Who somehow, over night, turned into an honest to goodness teenager.

  And tall.  Like my height already tall.  He had a video game truck that came to the house.  A bunch of good buddies that celebrated with him and yeah, I think and I think he would say,  it was a really great start to being 13.

It's been so nice to receive comments and emails form people saying how much they have missed checking in here.  Seems the consensus has been, how much they have missed Zoey.  Which I find so absolutely sweet and telling as to the impact she has had on so many people's lives.  In ways I most likely will never know.  Which some people may find odd.  At least those who aren't into blogging and online journaling.  But I know for a fact, since starting this blog almost exactly 6 years ago, so much good has come from this space.  Maybe that is why I have returned.  Who knows.  But yes, thank you, especially to those who have never commented or sent me a correspondence before.  Thank you for letting me know you are out there.

One last picture.  Since so many have been missing their Zoey fix.  A picture from awhile ago.  One collage of a few pictures I took when I was on hiatus.  She really is rare and she is absolutely beautiful. And I do love her.  Heart and soul.

Friday, March 14, 2014

" Out on the ocean sailing away ...

I can hardly wait to see you come of age
But I guess, we'll both just have to be patient
'Cause it's a long way to go, a hard row to hoe
Yes, it's a long way to go but in the meantime
Before you cross the street
Take my hand
Life is what happens to you
While you're busy making other plans
Beautiful, beautiful, beautiful
Beautiful boy"~ John Lennon.

13 years ago we welcomed this amazing child into this world. 

Sweet natured from the get go.  A gentleness that remains to this day.

He is honest and kind and compassionate and forgiving.  He is a loyal and steadfast friend.   He is a patient and loving brother and uncle.  And he is a protector and caregiver, already, to the one who requires it the most. At the tender age of 13, he is all that you could ever hope or wish for your child to be. 

Happy Birthday Jake Matthew.  My beautiful, beautiful boy. 

Wednesday, March 12, 2014

So here is the deal ...

I tried.  I really tried to make my other space, my new space, work.   It just didn't feel comfortable.  And although I am a big fan of stepping outside ones comfort zone, in this case, if I am going to continue to write and share, I need to go back to what I know.  After 5 years of being here, this feels like home.  More authentic.  More me.  This is what I know best.

I have come back here a few times over the last 6 months and found a dozen or so comments left for me on previous posts.  Some random and not particularly noteworthy but most were from people who had googled a word, a phrase, a diagnosis, or a quote and found themselves here.  And their comments and have been amazing.  In some cases I have been able to reach out and help in some way or another.  I have to tell you that that has been the greatest gift of this blog.  The connections.  The feeling of making a difference.  I have missed here, as much as anything else.

So I am going to make a go of it again.  I know the layout of blogger and its format like the back of my hand.  Posting, although never a quick process for me, feels far more effortless here.  Not laborious.  As for the the people who found their way here before and tainted it with their vitriol words, I will continue to moderate and that will be that. I will not dignify any of it with any type of response or action.

I want to share this comment that came in a few weeks ago that I found this morning.  I thought it was absolutely beautiful.  

"Hi Heather. Thank you for something you had no idea you did. Nelson Henderson was my Grandfather. We grew up in Northern Manitoba. He passed away when I was 12, but I still remember him using that phrase Under Whose Shade to remind us that life was not always about "us" Today, I learned that my father (his son) has serious cancer and for consoling and some insight, I thought to google my grandfathers phrase and see what came up. I had NO idea his guide for life became viral. Especially since his passed away over 35 years ago. His life was very much about kids and family. They raised 8 of their own plus a few local orphaned kids as well. Reading a few of your posts, I suspect you share similar traits about life. Thank you for reminding me of the importance of my family. Jason Henderson." 

The quote he is referring to, in it's entirety, reads as this:" The true meaning of life is to plant trees, under whose shade you do not expect to sit."

And this comment reminded me also of one of my top 5 quotes ever.   Today, for whatever reason,  I felt the need to revisit it as well.

" Strange is our situation here upon earth. Each of us comes for a short visit, not knowing why, yet sometimes seeming to a divine purpose. From the standpoint of daily life, however, there is one thing we know: That we are here for the sake of others ... for the countless unknown souls with whose fate we are connected by a bond of sympathy. Many times a day, I realize how much my outer and inner life is built upon the labors of people, both living and dead, and how earnestly I must exert myself in order to give in return as much as I have received." ~Albert Einstein

So here I am for the time being.  I think.  Fickle thing, aren't I?   


Sunday, July 28, 2013

This will be my final post to this blog ...

I could make this all dramatic. Find some quote fitting to a closure or an ending, cuz you know I am the queen of quotes but you know, I just don't have it in me. I really don't. I wish I could go out with the beauty that I think this blog has exuded from the beginning but I am worn. And a bit broken. And, well, pissed. Yep, a little of that. But first and foremost, I need to protect my family. And four years ago, when I went to comment moderation, I thought I had made steps to somewhat ensure that. In the end, that wasn't enough. Truth of the matter is, the only way I could have protected them all would have been to be anonymous in the beginning. Bit late for that I'd say. So the long and short of it is this:

4 years ago, 5 years after starting this blog, after nasty and down right cruel comments were made, I was going to end the blog then. I instead bought into the theory that if I did that then "they  would win." That I, more importantly  Zoey, had so much more to share with the world. And it was true. This girl of mine and her remarkable story has been a gift to not only us, her family, but countless strangers, who found us through a google search or blog link or whatever other avenue via social media and such. I cannot even begin to tell you of the incredible people, families, children, that we have met virtually or in person, because of this blog. I cannot tell you the the number of emails that found their way to me, to ask me questions, advice or just simply thank me, for sharing Zoey's story. The communities that we have joined, reach far beyond the Down syndrome community. Far beyond. Knowledge I had garnered through all of Zoey's obstacles, allowed me to help other families. And that, in many moments, gave me a measure of peace and perhaps purpose of why we all, or rather she, had to journey the road we all were traveling. There has been so much beauty along the way. Sadness yes. But so much beauty and as I end this blog, that is what I will hold tight to.

The bottom line is that we have continued to receive many nasty and cruel comments. And we believe from the same source. The continuity of the writing. The phrasing. The style. The personal use of our names etc. Everything points to the same individual. And what we also know, with a high level of certainty, it is someone who knows us. Their comments have contained information that only a person who knows us, would be able to write. I knew that 4 years ago and after this last comment, I know this today. And the person who has written them, knows all too well that I have comment moderation. Which means, nothing gets published without coming through me first. And they want me to see it. Their intent is to be cruel and hit me where it hurts and they have done just that. Have they won? Nope. Not necessarily. But I am done. I truly am.

The thing is, I am mostly on Facebook and Instagram anyway these days. And I only have friends and followers that I know there. Or at least I think I know them. That's the thing. Do we really ever know somebody? I mean really, deep down, to their core, know someone? I would like to think so but the truth is, we really don't. I am hoping and praying that it is a fringe type person but truth be told, some information written, has made me question that. And that is sad. I know people like to say that there is more good in this world then bad but I have to say, sometimes I wonder.

Am I personally sad? I am. A little. I have loved this sacred place of mine. This place has been a source of comfort during some of the darkest of times. We have been rallied by the outpouring of love, support and prayers for many years now. And some of the friendships I have forged will last for years to come. The people that have come to mean the most to me, and I to them, the ending of this blog, will have no impact on that if the friendships were rooted in authenticity to begin with. It forces myself and others to work a little harder for the relationships that meant something, to enable them to continue to foster and grow.

I guess that's all. Weird to say that so casually and oddly, with calm. But I feel peace about it. I am still meant to share Zoey's story. Our story. This much I know. However now I am called to figure out just how to do that without this blog. My girl has been our trusty guide in this life for over 6 years now and I know that she will continue to show me the way. She always has. Now will be no different.

Peace to you and yours. My deepest thanks and gratitude to those who come by here often or just from time to time. I have appreciated the love and light you have showered on us, more than you could ever, ever know. Those are not just cliche words. I speak them from my heart.

One last thing and it may be a shameless plug to some but really, in the end, its not for me. It's for Zoey and all her warrior friends actually. All of the friends we lost along the way. Funerals of too many children I came to love and should be here today. Goodbye came too soon for their families that loved them. You see, this blog was going to be an avenue to continue my fundraising for The Leukemia and Lymphoma Society and my marathon in the fall. A marathon that has raised millions upon millions of dollars to further research, fund clinical trials and support families deep in the trenches of fighting these blood cancers. In the past I have humbly come before the readership here to help me reach my goal and every single time, you all have not failed me. Or rather to have not failed the people, adults and children alike, fighting to get to cure. People like my Zoey Grace that is now 4 years in remission. I need your help. THEY need your help. As a last hooray, lets see if we can honor Zoey and reach my goal. How great would that be. Good would indeed win over the bad. I think it is possible. In fact, one of the very first quotes I used and one that was our mantra in the early Infantile Spasms days and was on a plaque on Zoey's bed during the leukemia days and it was " Everything is possible ... the impossible just takes a little longer." Let's not let it take necessarily longer. Lets reach that goal now. Please go to my fundraising page, which needs some serious updating or scroll to the top and follow the links there and donate today.

I guess I can't possibly end without a quote. One of my favorites. One found on my sidebar. Read it and remember it and live it. I will try and do the same.

"Strange is our situation here upon earth. Each of us comes for a short visit, not knowing why, yet sometimes seeming to a divine purpose. From the standpoint of daily life, however, there is one thing we know: That we are here for the sake of others ... for the countless unknown souls with whose fate we are connected by a bond of sympathy. Many times a day, I realize how much my outer and inner life is built upon the labors of people, both living and dead, and how earnestly I must exert myself in order to give in return as much as I have received." ~Albert Einstein