Wednesday, July 23, 2014

Looks like I have a trend happening here...

As in I find myself with a half dozen blog post ideas, to which I fully intend to come here and jot down my thought on say a single topic and then, well, life happens.   One day passes into another and one idea morphs into a few and then zap, as my mind operates as of late, I forget each and every one of the aforementioned ideas.  And when I finally carve out a bit of time,  I sit down and find there has been so much going on and friends and family are mostly looking for everyday life updates,  that I end up doing a free for all random post.  Which is all good but perhaps a tad bit boring and not at all what I had planned.  But here I am and here it goes.  Another disjointed, random post:






I find myself doing a lot of the "steadily" and perhaps not as much of the "abundantly" but given the state of my life and the tempo of the days, I think I should be a bit more forgiving of myself and be proud that I am moving sanely at all.  And on some days, the sanely goes out the window and I just am moving.  Which works.



Our weekly Sunday dinners continue.  Sometimes we are minus a few due to work schedules.  Mainly Jess and Matt who are out there saving lives cuz lifesaving doesn't halt for Sunday dinners.  I suppose, now that I think of it, the presence of these beautiful human beings should be classified under  "abundantly" because when I see them all together, broken into small little groups, discussing life and loving on little ones, that my friends, is abundant joy for sure.

Zoey continues to like to "walk" holding someones hand.  This little snippet I caught on the 4th of July as she made her way down to the cul de sac to see the neighborhood kids doing their thing  And this little thing makes my heart happy.


video


I seldom have time to myself other then before say 6 am and after 10 pm that is.  With Zoey deciding a few times a week that 4am-ish is a grand time to start the day, I end up hopping out of bed, leaving her with Mark and heading out for a bike ride and a run.  Due to some ongoing, pesky chronic health issues, I am having to bring my athletic endeavors down a notch.  Trying to instead do a bit of cross training that involves the running and biking and some light weightlifting to give my somewhat flabby and nearly fifty arms some love.  When school starts back I will resume Yoga.  I HAVE got to get back to yoga.  My summer schedule just doesn't allow it unfortunately.  But I really need to get back to it.  As much for my mind as my body.  Probably more for my mind if the truth be told.




Speaking of running.  I received these wings in the mail the other day from a long time friend.  A friendship that began in mid February of 2008.  A friendship that is actually responsible for the beginning of this blog.  My friend Rae has a son Sam, who is much like Zoey.  A few years older.  Mischievious and warrior like.




 The evening I received the results of Zoey's EEG that confirmed Infantile Spasms, I began pouring over the internet.  That was, pouring over the internet after I picked myself up from the laundry room floor.  Because as our pediatrician read me the results and my otherwise fairly optimistic pediatrician voiced his concern about being able to control these seizures, I literally did one of those signature moves you see in the movies, and gasped, covered my mouth and slid my body down the wall to rest my devasted body on the floor.  Sound dramatic?  For a diagnosis of Infantile Spasms, not so much.  Nothing particularly positive can be found when you google that diagnosis.  In fact, down right depressing and yeah, horrible.  But that night Rae and her blog that I found during my internet search and the story of her journey with Sam, were my beacon of hope and they were, truly the wind beneath my otherwise weary and broken wings.  I will always, always be indebted to them for that.  Always.

I leave you with this.



 Could think of no better way to end this than with a picture of this sweet 12 week old little cutie pie. Simply adorable our little messenger of hope and healing. Simply adorable.

Saturday, June 28, 2014

What I do when I am not wrangling children ....


Last week when we were at the beach, Caitlin was heading back out of town with Olivia and Charlotte was staying behind to sleep over and maybe there was an extra child or two staying as well, and suddenly Cait pulled over and took this picture.  She posted it to Instagram with the caption: "Just Heather being super cool wrangling her kids plus mine .."

I don't know about the super cool part but I think I am one hell of a child wrangler.  And if you know me, I seldom acknowledge being good at anything.  But wrangling, yep, I do that fairly well.  I joke around with the older girls and tell them one day I may need to invest in one of those ginormous Sprinter vans to transport all my wrangle-ees.


So what do I do when I am not in wrangler mode?  Truth be told, not much.  Most days I do not sit down until 10 pm-ish.  Maybe a bit before if we are watching a program together.  Which often it is hard to find one suited for all the kids, and usually we opt for the History Channel, Food Network or Zoey absolutely LOVES America's Got Talent.  "The Voice" is her preferred choice though.  She literal says "Adam" every night.  Perhaps my unhealthy obsession with Adam Levine may or may not have rubbed off on her. But you can hardly blame the little love for asking for her Adam, can you?



  Anyway.  Spare time, let alone, solitude time is hard come by in these parts.  I do try and fit in a bit of running.  But even that has been sporadic. Especially since school is out for the summer. But really, when the day is finished, I either try to read or lately, I stay up far too late catching up on "Call the Midwife".  And can we please talk about that show for a moment?




 Fabulous.  I have blown through two seasons and am off to Target later to buy season 3.  I highly recommend it.  First two seasons are on Netflix.  You can probably find the 3rd online and the 4th is slated for release in December.  Not to be sexist, and not to say my TV show making husband doesn't think it is really, really well done, but honestly, I think it's a chick show.  I am not one to gender label anything, given the fact I am a girl/woman and I think I am fairly capable of doing many things that are viewed as boy/manly stuff, but I think the demographics of the viewing and maybe target audience are females. So if you are a guy or have a significant other that follows this series religiously, please accept my apologies for the stereotype.  So sorry.

As far as reading goes, this is currently what my bedside table looks like.




Which is really sort of ironic because I seldom even read in bed.  But there are my reads as of late.  I am at some point in the pages of each and every one of these books. The only one finished and that I have actually read twice is,"A Grief Observed" by C. S. Lewis.  which also may speak to some of my life events over the last nearly 2 years.  An easy read.  not in subject matter but in length of the book. I think it is little more then 100 or so pages.  And my Kindle there, has 4 or 5 other books downloaded and started but not finished.  What my deal is, I have no idea.  I just cannot seem to finish a book.  I usually get into a book and cannot put it down but lately, my attention span has been nil.  The forerunner, and the closest to completion is "Out of My Mind". The book is written from the perspective of a young girl named Melody who has Cerebral Palsy.  "Out of My Mind" attempts to shatter the misconceptions that the world, and even those closest to people like Melody, have when a person is unable to walk or feed themselves or talk.  Sadly, most correlate ones physical limitations automatically to intellect.  And honestly, with people who have Cerebral Palsy, that assumption is so off the mark.  I think I have actually passed chapter 6 of "Out of My Mind" and I just might finish this one in a timely fashion.  Maybe.

And while I am talking about books and my Kindle, I need to give a shout out to my friend Elizabeth and congratulate her on her ebook that just came out a week or so ago.  You can down load it at shebooks and it is titled "Hope for a Sea Change". Here is a brief description of her ebook:

  • When her three-month-old daughter Sophie is diagnosed with a rare seizure disorder, Elizabeth Aquino and her husband, Michael, are thrust into a nightmarish world of impossible decisions, toxic drug cocktails, and talk of brain surgery on their tiny child. As they grapple with the harrowing progression of their child’s seizures, they grow to understand that the doctors know little more about how to heal Sophie than they do. They are in a terrifying no-man’s-land. This narrative of unintended medical trauma and the search for healing through alternative means will sear you with its stubborn hope, unexpected grace, and abiding love.

 Elizabeth is a magnificent writer.  Gifted in fact. And this snippet is only a portion of a larger manuscript that I wish for her, and for the rest of us, to be a full fledged published book one day.  For now, I am supremely proud of her and I think you should most definitely go get yourself this beautiful piece of writing right now.

Side note concerning the ease of FB and Instagram that I mentioned when I resurfaced the other day.  I guess Facebook specifically.  What I have noticed about my last two posts, is that I may get very few comments here on the blog but on FB, because I link my blog there, I get easily 4 times as many.  People just link over here and click back to FB to comment.  Gives pause to the times we live in and different medias we have access to and  how information, good and bad, can go out to the masses.  Social media can get a bad rap.  Some of it justified, but honestly, not to sound cliche, when used for the greater good, it really can be a beautiful thing.  

Well, looks as if my wrangling has ended early tonight and I think I will pick up one of those poor neglected reads and make some headway.  Or not.  Hard to say the way it will play out for one tired and slightly worn out wrangler.  Exhaustion might prevail.

Have a happy Sunday everyone.



 





Wednesday, June 25, 2014

Well gee thanks California Department of Education ...

A few months ago I signed a consent form at Zoey's school for an outside diagnostic center to do some educational observations.  I didn't hesitate in having her participate because I am a staunch advocate in participating in studies, especially since our journey through cancer.  Case studies and research are the reason my girl is here today.  Anyway, I did not inquire as to what type of study was being done and felt comfortable not pursuing other information and that was that.

Yesterday I opened my mail and found this:




A three page report with attached documents on their findings as they pertained to Zoey.  As I sat in the car waiting for Joe to finish his piano lessons, I think I laughed out loud.  Actually, I know I did.  Then I got a little bit bugged.  Given the current state of the California's economy and the cuts to services within and outside the school districts statewide, as well as the continued cuts to enrichment programs, not to mention, did you know that in our school district there are no longer librarians in the schools?  Yep, we did away with that paid position.  Teachers now need to work it into their weekly curriculum if they want the kids to be able to check out books.  I sat in my car and wondered just how much money and man power was wasted on this program.  And who's brain child was this?  Certainly not parents to a child like mine.  Because let me tell you, if I had been sitting at a table when this plan was being hatched, I would have most definitely not backed it.  I am not certain any of these findings fall under the umbrella of "education" either.  I could go on and on but let's cut to the chase, shall we?

It looks as if I have been wasting my time trying to get Zoet to oh, lets see, walk, eat independently, etc. Because in their opinion, Zoey might be well served participating in a good 'ole fashion game of "Horse".  I however disagree.  I say a game of "Pig" is much more within her reach.  Fewer letters to keep track of.  My favorite line is the first.  I cannot wait for her to become proficient in her shooting so I can shoo her outside to "independently" play some basketball.




And they were ever so kind to attach a diagram to help me with her form.






Does anyone else see the absolute hilarity of this? The two handed/arm throw about kills me.  Because of Zoey's stroke we know how effortlessly Zoey can use both arms.  In unison.  And, if anyone was not aware, Zoey attends a school for children with moderate to severe disabilities.  To send this out to parents such as myself is insulting and frankly, a tad bit hurtful.  But in their defense, they also had another quite helpful suggestion:



 Gee thanks California Department of Education.  I am so grateful for your continued guidance in making sure Zoey's educational needs are being met.  Okay.  Gotta run.  Need to strap on Zoey's basketball shoes and get out there and shoot some hoops.



  

Tuesday, June 24, 2014

I was here and then gone again. What was up with that?

You know, I can't really tell you the exact reasons why it has been nearly 3 months since I last was here.  I suppose the easy posting on Facebook and Instagram is one excuse.  A couple clicks and I am done within minutes.  Opposed to here, where writing seems to take me FOREVER.  But ease of posting elsewhere would only be a small portion of the reasons I have been away.  Let's see if I can catch, those who care, up to speed in a somewhat speedy fashion.  And along with that, an apology for a whole lot of repeat info and photos for some.

First off and most importantly, our crew has expanded by one.  A beautiful, perfect, little one. My granddaughter Olivia Grace arrived April the 22nd and her arrival has proven to be a messenger of healing for our family since we lost her older sister Grace Margaret 17 months ago.  Her mom and dad and big sister Charlotte are over the moon in love and so are the rest of us.






And come June of next year, we will add another to our crazy bunch.  In April Taylor and Leo became engaged and we are all thrilled and so very excited for the life that lies before them.  They are both incredible teachers and have such amazing hearts for each as well as this world and they truly are so, so good together.  And as a mom, to see that love and commitment, well, I couldn't ask for anything more.  I am 3 for 3 in the son in-law department. How lucky am I that 3 men are loving and caring for my girls in all the ways I ever dreamed for them?






Lets see. What else.  Oh, Zoey did indeed get one of these. However, she hates it.




We will just keep trying and in the mean time, she is doing so much more of this and we hope with the strength gain in her legs and her desire to be upright, that once her balance kicks in, maybe, just maybe, walking may really, really happen.

video



Let's see. What else?  Oh. There were an awful lot of happy  hockey fans in the house as we watched the Kings win yet another Stanley Cup  All were happy.  Except I venture to say, my son in-law who's hometown Blackhawks missed out on a bid for the Stanley Cup, losing to the Kings in the semi finals.  Poor Matt.  So out numbered.




The kids and I just arrived home from a week at the beach.  Mark unfortunately couldn't get the time off as a new season of a show he works on just started back up.  So I braved it on my own. Which was, well, brave.  I survived.  And the kids did also.  And Charlotte even stayed a few nights, as did one of the boys friends and the week actually turned out to be lots of fun.  The reality is, taking Zoey anywhere is not an easy gig.  Its hard.  Really hard.  But the beach is one of her favorite places and I was not going to not do this.  With that said, next time, we all go together.  Not so much for the the help with Zoey but for the entertainment and supervision of the boys.  We often have to divide and conquer because there simply are things Zoey cannot do or that we cannot do with her.  Just the fact.  And so we adjust and adapt and the last week I did a whole lot of adjusting and adapting and maybe, just maybe, may need a vacation from my vacation.





So there you go.  The beauty that has been happening over the last few months.  It's always a wild ride in these parts.  Complicated and difficult on some days but I still choose joy most every day and choose to not let the heavy stuff push out the good stuff.  I find that the faster the days pass the more I cling to the abundant blessings.  The rest of the stuff, the heavy and the hard, seems much more doable when love and the light are allowed to rise to the top.

I'll be back.  Sooner rather then later.  Promise.



       

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.