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

55 comments:

Kristin said...

we still have fb :) but still... :(

The VW's said...

So sad you have had to deal with this, Heather! Breaks my heart for you! I am so thankful for having met you and Zoey here! You have been such a blessing to me! I'll be looking forward to continuing our friendship on FB. Love you sweet friend! Hugs!

Emma said...

Awe what - this saddens me :( when I started following your blog 4 years ago, it led me to many other Down's Syndrome blogs and that's been a huge blessing which stemmed from you. I don't know you in real life, in fact I live in another country. Maybe you should have a Facebook page for Zoey. Anyway, if I can't get in touch again, I wish you and your lovely family all the best and many blessings ahead.

E x

Claudia said...

Fair enough. I totally understand, but I am more than thankful that you did write this Blog, because WE met here. In the Blogosphere. Which is not always nice- but mostly. Some haters can turn it to a sad place, and yes, you dont need that in your Life. I'll miss this place. But I understand. Maybe because I did the same.

Love, always.

Cathy said...

We will miss you!
Have your quote on my blog page...
The impossible just takes longer.

Sending you love

Stephanie said...

Devastated...

Anonymous said...

I happened upon your blog a couple years ago. I will miss hearing how you and your family cope with life. God be with you.

Karol said...

Sad to see you go but I do understand. Take care, my friend.

EN said...

I am so sorry to hear this and I am gravely disappointed that there is an individual out there with so much time on his/her hands and so many vile thoughts and hurtful intentions. Zoey is a beautiful blessing and she deserves nothing but respect and admiration.

christy said...

Have they won? Has this mean, nasty, cruel person won? No! You say 'not necessarily'. But I say 'absolutely not!!!' How is it that someone who hides behind a computer screen under the shield of anonymity could win? It is impossible. YOU have won - by holding your head high. By moving through life with grace and poise and love. That's the thing that you have mostly had as far as I've known you. Love. You embody it. We ALL see it in your face when we see those (rare) pictures of you on here. We see it reflected in the faces of that beautiful pack of people you call your family. Mostly we see it in Zoey's smile. And her purity and innocence can only return what's been given her. I realize there's not a mean bone in her body. But she doesn't have to be a beacon of light in this cruel world. And that's what she is! What she's been to me. And to Matthew. And therefore to my whole family and my whole world. You see, and I think you know, and I hope whoever this nasty person is will read this comment - there were days when I thought the sorrow of watching my baby be pumped full of poison would overcome my ability tontake another step. And not just me - countless others. We ALL know that in the virtual pages of this blog is a light shining through that darkness. For me the darkness of TMD and AML. For others maybe it was also cancer or heart defects, relentless seizures, T21, or maybe just even herding a large family through life. Zoey got us through. So many things that threatened to take Zoey from the world. And to a much better place, one where there certainly is no possibility for random hatefullness! But she's still here! She showed us how to keep moving. And not just Zoey, but her sweet daddy, her beautiful sisters, her precious brothers, her darling neices, and her awe-inspiring mom. I will forever be grateful for the time, the courage, the persistence it took to put yourself, your family and you Little Wonder out here. And I know we will meet one day. And I look forward to it! From the bottom of my beat-up heart, I love and I thank you and your family!

jess said...

I have quietly followed your blot for a while, and your sweet family has a place in my heart. So sorry someone has hurt you. Wishing your entire family a lifetime of peace and joy together. Take care. I will miss your writing.

And that little girl if yours...well she is just pure magic. Wishing her everything she ever wants.

Jess

Reagan Leigh said...

Very sad. I'm sad that you've had to endure nastiness after all you've been through! I'm sad for all the people out there who have been touched by your story and will miss you greatly. And I'm sad for me! I'll miss these updates on Miss Zoey and the fam. I feel like I'm losing my friend more each day...and that makes me sad. :(

Bea Braun said...

I will never forget when I was first introduced to your blog. I spent the entire Sunday reading it. It was so inspirational and moving and showed not only your families amazing strength but also it's vulnerability.

When you look at your comments you deserve to feel uplifted and supported. Your blog and your wonderful quotes will be missed, but in the end you have to take care of you.

xoxoxox

Shelly Turpin said...

I thank you for the time you have invested in your blog. You will never know the difference you have made in my life. I am forever grateful for you!

Elizabeth said...

I'm so sorry to hear this and will miss your heartfelt posts and beautiful photos. I know I'll see you out here, though!

Karen Gerstenberger said...

Heather, I understand more than you can guess, the feelings and experiences you describe here (see my recent blog posting). I am sorry you have been attacked. I am thankful to know you & I have enjoyed your blog and your openness. Please know that you have my support. I hope you will find a way to continue to share your heart's feelings as you are led. God bless you & your family!

Joan Nolan said...

Hi Heather,
I have been a fly on the wall for many years since Lisa shared your blog with me. Even though we knew each other for a very short time when you lived back east,I am edified
and honored that you have shared your faith and struggles with all of us. Don't let the darkness penetrate any part of you-the sad fact is that it will always exist. Continued prayers for you, Mark and your beautiful family.
Patty Sinay

Life and Times . . . said...

I started reading your blog years ago when my husband's cousin's little boy was diagnosed with infantile spams. Through your blog and others, I've come to learn about and hopefully better understand a world that I only vaguely knew existed. This world with these beautiful special needs kiddos isn't one that any of you asked to join, yet you daily live in it with grace and passion. Your Zoey is beautiful. Your whole family is for that matter. Even more than that, you're inspiring. I will miss reading about the goings on in Miss Zoey's life but know that you must absolutely protect your family before anything else. Thank you for sharing.

Amanda said...

Heather, thank you so much for sharing your story with us, for allowing us to know a piece of you. I've so enjoyed following along with you and your family over the years and wish you all nothing but the very, very best! Sending all the love and hugs you deserve, from one coast to the other!

Michelle Bogart said...

I have been a silent reader for about four-five years. You will be missed.

ardith said...

So sorry to hear this.. Why are people so cruel? My best to you, your wonderful family and especially that sweet, sweet Zoey. I shall miss checking in with you, and your positive spirt.

Rosemary & JC said...

I started reading your blog through the Giles link (I taught with Coach). I will truly miss keeping up with your precious family. I'd love to follow you on FB if you would care to friend request me...Rosemary Sweet Evans.

Kevin Jordan said...

I will miss your blog. I found it several years ago when Zac was first diagnosed with Cerebral Palsy and seizures and have found help and comfort in it over the years. I wish you and your family the best!

Kevin Jordan

jan said...

from someone who doesn't do Facebook, twitter, Instagram -- wah!!!!! love ya and your dry and witty ways. You'll be missed here :/

Amy, a redeemed sheep said...

I wish you and your sweet Zoey well. =)

Anonymous said...

I'm just a "lurker" who's never commented before and lives on the other side of the continent, who's read your blog for 3+ years. I'll miss your beautiful family, but respect your decision. May God bless you all!

Danette said...

Heather, you have touched so many people. You have a wonderful gift for writing that is going to be sooooo missed by so many. It's a shame that people have so much time on their hands to perpetuate evil. If only they could spend that energy on making it a better world! Will miss your beautiful writings, hope you find a new outlet for your gift.. Love you much!!

Heidi said...

It's terrible that someone could be so cruel. I'm sorry that happened and continues to happen. You don't know me, and likely never will, but I hope the best for you and your family. Zoey has inspired me to make a difference in spite of difficult circumstances. Thank you.

Anna said...

Hot tears streaming as this chapter comes to a close. I know that the story is not yet finished so that in itself will be the only thing that gives me peace. I can remember not even knowing what a blog was yet out in the Infantile Spasms community you taught me more than you will know. Across the miles you sent kind words and we prayed for you in return. Fast forward though Zoeys fight with leukemia and us finally adopting our Grace- imagine our surprise when it was you comforting me as out Grace developed seizures last summer. You were the only one that seemed to know what to say. I'm so thankful for how your story has become part of my story. With much love.

The Steelman Family said...

The Steelman Girls are going to miss all of you. Its so sad that the blog is coming to an end because of one individual...People are cruel....My girls look at people totally different now cause of Zoey..We loved watching your family grow...soo sad

Anonymous said...

Unbelievable that this is still going on! Sad, sad that you must end a truly beautiful blog. You have inspired so many and those of us that know and love the Needhams will miss your blog Heather. I've been a hold out against face book but maybe I will just have to change my ways!

LOVE & HUGS

Aunt Bluebelle

Mary R in Turlock said...

First of all, the wedding was beautiful. Jess looks EXACTLY like you and I'm sure she has her mom's beautiful and gentle and compassionate heart.

Secondly, I will miss reading your blog. I usually check in at least every couple of weeks. You have shown yourself and your family to be towers of strength and graciousness and love for others. I'll try to keep up with you through some of our mutual friends.

Lindsay Marie said...

I'm going to miss you so much :( Thank you for your words of wisdom and for sharing Zoey's story. I would ask to become your friend on Facebook, but I know you don't know me personally and I understand. Please feel free to follow my blog. I pray that Zoey and you and your family receive an abundance of blessings.

Lindsay Marie

Anonymous said...

I've lurked on your blog for several years, and this is my first comment. Thank you for having the courage to share your family's story with the world. You've opened my eyes to so many issues and helped me be a more empathetic person. How sad that that anonymous commenter is so full of hate and evil to attempt to bring your spirit down. You have to make the best decision for your family, and I respect that.

Scrappy quilter said...

This really saddens me when others have so much control over the internet. Why is it that they can't get a life. We will miss our sweet little girl and you Heather. I've followed her almost from day one, prayed for her, cried with you and your family and watched as our little princess blossomed into who she is today. Please E-mail me your facebook link so I can follow you there. Love you and her dearly

Scrappy quilter said...

This really saddens me when others have so much control over the internet. Why is it that they can't get a life. We will miss our sweet little girl and you Heather. I've followed her almost from day one, prayed for her, cried with you and your family and watched as our little princess blossomed into who she is today. Please E-mail me your facebook link so I can follow you there. Love you and her dearly

Anonymous said...

I'm a faithful reader who has found inspiration from your blog and your sweet Zoey's story for nearly 4 years. I found you fairly quickly after my beautiful girl with DS was born. I'm sorry someone else is making nasty, cruel comments. Clearly, they're coming from a sad, dark place. My best to you all.

katie said...

Been reading your blog for about 4 years now, and you and your family has been an inspiration. Hate to see you go, but I wish you and your family the best of luck in the future.

blogzilly said...

I'm certainly not an anonymous follower, and you and I are both fairly intimately aware of how easy it is to be fooled by people on the Internet, and how much trust is important in this community. You don't have THAT, what have you got?

I think some time off would be good for you. Knowing all that is and has been on your plate. My hiatus, without the eloquent goodbye you provided (but I don't have your elegance, I talk about ball powder and bat wings, remember?), has been pretty helpful.

You'll be missed though, as you can see. But like you always say, I know you will soldier on and get through this like you have everything else. And you have Facebook and stuff, which is cool. So it isn't really GOODBYE as much as it is kinda Ah-Nuld in Batman and Robin as Mr. Freeze. "Hey Uvurybody...CHILL."

Shannon said...

We, too, have been subjected to cruelty by those "close" to us. It is truly devastating. I will miss reading & especially following the inspiring trail that beautiful girl of yours is blazing!! God's blessings to you & your entire family.

Merideth said...

I am so so sorry you are dealing with a person. I know you know this but remember that this reflects the kind of person that THEY are not the people that you or your family are.

I will be sad to see you go, I wish there was some way to keep in touch, but I understand that may feel like too much right now. Always know, no matter what, that I am sending love, prayers, hugs, strength, to each and every one of you!

Much love,
Merideth

csmith said...

I am so, so sad for the ugliness that marred your wonderful blog. I have really enjoyed your writing and following your sweet Zoey. You have made me realize what an incredible gift and blessing all of our children are, despite the challenges and heartbreak that sometimes come with mothering. You have no obligation to share your life with any of us, you need to do what is best for your family and your own peace. Love and Prayers

Dawn said...

I am sorry and appalled at the betrayal, it never ceases to amaze me the levels people will sink to. Just remember the many people you have touched and inspired without realizing it.

My best to you and your wonderful family. I have a feeling your grace and dignity will put the cowards to shame.

Lisa said...

Heather, it has been a blessing to get to know your family through your blog over the last 4 1/2 years. You have all been an inspiration. Thank you for sharing your heart and your life with us. I think you've made a wise decision for yourself and your family and I am confident that Zoey's light will continue to shine just as bright in this world, blog or no blog.

Anonymous said...

I've been following your beautiful family for almost four years now, I found your blog through the fabulous Pablo's blog after somebody sent me a link to pray for him, your comments and love for him and his family made me curious of your own story and once I read about your beautiful girl I was hooked to get her updates and to pray for her and her family, I for one will so miss your updates, your words and your strength. I'm more than sorry that somebody has done this to you and your loved ones, even sadder that it is someone you personally know. Please mind yourself and your beautiful loved ones, Kate in ireland

Michelle said...

I want to tell you that your blog truly changed my life. I am embarrassed to admit that before I started reading your blog, I didn't think much about the "r" word. But Zoey changed that for me - and for my family. Now if I hear someone using that word, I call them on it. I believe it has made us more aware of the feelings of those around us. And for that, I cannot thank you enough. I will miss reading about your family. I am sorry there are people in this world who delight in being cruel. Even though we have never met (and I hope this does not sound too presumptuous) your family has become a part of my life. I wish you and yours peace and happiness always. And maybe if you get a friend request from me, we can connect on facebook. (I would love that.) God bless you. Michelle Drollinger

Michelle said...

I want to tell you that your blog truly changed my life. I am embarrassed to admit that before I started reading your blog, I didn't think much about the "r" word. But Zoey changed that for me - and for my family. Now if I hear someone using that word, I call them on it. I believe it has made us more aware of the feelings of those around us. And for that, I cannot thank you enough. I will miss reading about your family. I am sorry there are people in this world who delight in being cruel. Even though we have never met (and I hope this does not sound too presumptuous) your family has become a part of my life. I wish you and yours peace and happiness always. And maybe if you get a friend request from me, we can connect on facebook. (I would love that.) God bless you. Michelle Drollinger

colleen said...

ok so i'm on vacation... took a look at the Mac,just to see what's going on... and was shocked by the title of this post. Now I think I get what you were referring in your previous writings on the blog. Thank you so much for all you have written ... meeting Zoey through your blog has enlightened my world view... you will be missed... and expect a great many facebook messages from yours truly!

Alan and Lynne said...

So breaks my heart that others can be so cruel. I have loved following and watching Zoey. What a great family you have. What a blessing Zoey is. Even if you are not longer here, Zoey will always be on my mind and in my prayers. Love to all of you Lynne

Carolyn said...

I have enjoyed reading your inspiring quotes and encouraging words. You are incredibly strong. I loved seeing Zoey through your eyes-we have an adult son with Down syndrome who is such a joy! I wish you all the best. Carolyn

Cole said...

only love and gratitude to you and yours Heather.xoxo See you in other spaces :)

Anonymous said...

I do not know you, but I chanced upon this blog a few years ago through a coworker's family member's battle with IS. I have always looked forward to your updates, and have prayed many times for this Californian family that I will never meet. I respect your decision to discontinue the blog, but know that you have touched many lives, and will still have so many people, friends and strangers alike, praying for your beautiful family. God bless all of you.

sherry said...

I'm so sorry to hear your not blogging anymore! Thank you for sharing your journey! I loved reading about your brave fighter Zoey. She has brought so much love & inspiration to my life! Just know you are a beautiful soul and very inspirational person! Lots of love, prayers, and many more blessings to you and your beautiful family!

Steve said...

Lauri Kappen just brought over one of your blankets for my granddaughter who has P3 A.L.L. with Philadelphia Chromosone. She is only 4 years old. Your kindness towards us, complete strangers has touched our hearts. Thank you.
Grace's grandma,
Deva Andrews

Justine said...

Not sure how I missed this so long ago, but I did. And now I miss you. I didn't realize it. Life hasn't given me much time for blogs over the past year or so, but still, I loved yours and am sad about your reason for leaving, but you have to do what you have to do to protect your heart and your family. Hope you and your family are well.