Wednesday, February 24, 2010

My welcome wagon comes equipped with a few extras ...

A few posts back, I received a very sweet comment from a long time follower.Her friend had just had a new baby.Shortly after birth,her friend's daughter was diagnosed with Down syndrome.The new family of 4 was adjusting to the news with grace,gratitude and of course,a natural measure of fear.This reader wondered if I might stop by and impart some words of encouragement and welcome this family into the "club".My first instinct was to pop right over to her blog,offer my congratulations and tell her welcome indeed.I wanted to assure her that the life awaiting all of them,was sure to be one filled with more joy,more laughter and more love, then they could ever,ever have possibly imagined.So I did pop over.But I just couldn't leave a comment.Not that every fiber in me didn't want to.I just couldn't.What held me back was this:If I left a comment, then this new mommy and daddy might just click back on my angel winged profile picture and find us here.And in doing so,they might start reading.And when they did start reading,our story,Zoey's story,her journey and the road we have traveled with her,that reading might very well do more harm then good.I just could not be responsible for that as they were newly entering these uncharted waters.In all honestly,this isn't the first time this has happened.There have been numerous other blogs that I have stumbled upon,but chosen to not leave a comment for fear of what it might leave in it's wake.I am not exactly the best suited welcome wagon.I was told that once in fact.Those exact words.The words stung in that moment but I have long since recovered.

And more importantly,I understand.Really and truly I do.Does that make me sad?Yep, sometimes it does.Or rather, maybe it did.But I have come to terms with that.I have embraced the "welcome wagon" I,or rather Zoey, does come equipped with.At least once a month I get an email from someone,pointing me in the direction of a family that not only has a child with Down syndrome but also has a child born into crisis or facing a devastating diagnosis,usually Infantile Spasms or Leukemia.In one case,a little love named Tabitha,from Canada,who is battling both.We have a new little friend we were asked to reach out to,her name is Colleen.She is from Illinois and is in round 3 of AML treatment.Colleen is a darling one year old and was born with TMD,the same transient disorder Zoey was born with.And for every Tabitha and Colleen, there has been a handful of others that I have had the privilege of "meeting", all because Zoey arrived with a bit more then an extra chromosome.Now,that of course is not meant to diminish the journey of all of our other "chromosomally enhanced"friends that have skirted some of these more challenging medical obstacles.I rejoice in the fact that they have.I would never, not ever, want those other children to shoulder and carry more then they already have or will have to, as they continue forward completing their stories.

I want to share with you another comment that was left for me recently.It came from another mom of a child with Down syndrome.I had arrived at her blog via another friend.Her child is beautiful and strong and courageous and I left a comment letting her know I thought so.She came back to my blog and said she had a confession.She had been to Zoey's site before but had to leave.Zoey's story and others she found on this site,represented all of her worst fears.Watching Zoey's struggles was too much for her and for self preservation she had to move on.I get that.1000 %,I get that.And I respect it even more.There might have been a time when I did not but today,I totally get it. And I am certain there have and will be, others and they too will come and move on and that will be alright.Zoey,her story,my blog,is not for everyone.We all, as we travel this life, are going to find others we relate to,that lift us and inspire us.We will click with some and others,not so much.To those that come and stay and to those who have been brave enough to venture back,I thank you.For in doing so you validate this life of Zoey's.You validate her triumph over the seemingly insurmountable,acknowledge that her life is not defined by her medical timeline and you confirm what I believe to be the greatest gift of her journey and that is hope.Hope above all.Our welcome wagon is indeed equipped with a few extra,extra's on top of the extra 21 but that is how God planned Zoey's life and my obligation,to honor that gift,is to share it.So I do.And I will continue to do so.And maybe,as time passes,my confidence in my slightly different looking welcoming wagon will allow me to leave comments and welcome any and all to this wonderful ride.

With Zoey turning 3 next week and leaving Early intervention,we are having to say goodbye to some of our very favorite therapists.We will miss them tremendously,as they have become family and we have come to love them so.Yesterday Zoey had her last session with her incredible PT,Patty and today we said goodbye to Katie,our amazing speech therapist.Katie remarked once again,how upon first meeting Zoey,she was going to be happy if she could get her to sign 5-10 words in her 8 months with her.Today we have have lost count of how many "words" Zoey has and her receptive language in full bloom.Once again,Zoey has surpassed someones wildest expectations and Katie will most certainly use Zoey as an example, to never under estimate the potential hidden within.

*Zoey is wearing her "graduation medal from Early Intervention Speech",courtesy of Katie.So cute!


The VW's said...

I TOTALLY know where you are coming from.....Gavin and I are no welcome wagon for Down syndrome either! But, despite this, I KNOW that I could tell a new family that life is wonderful and that this child will bring them more love and happiness than anything else on this earth! Life, in our shoes, may have held lots of trials, but I really wouldn't change any of them, if I could!

You and Zoey radiate happiness and love! Look at your girl! She is amazing! Not to mention, ADORABLE!!!

I love the pictures and that medal is great! Love and Hugs!!!

stephanie said...

I know how you feel only in the opposite way. Because Em has no medical problems I feel that people won't think I really know what it's like.
Don't get me wrong I thank God every day that she is the miracle that she is. Some days I still don't believe she is as healthy as she is.
But some times I shy a way because I feel people will think I don't know what they are going through.
I always pray that people who need to find me will. We are all here to help and support each other and i myself love welcoming new members to our "club". I thank God every day for leading me to you!!
You took me in and were there from the beginning of my "blogging". I felt you stayed close to make sure I was OK, then let me fly on my own.

Mama Mason-Mann said...

For me personally I need your blog to show me strength and hope and like you said, triumph. Does it scare me sometimes? Of course, but then I see how you and your wonderful family LIVE through it all and come out on the other side even stronger and more blessed and I realize I NEED you and your blog. I NEED to see your strength and your weakness. I NEED to see your REAL struggle. I am thankful for your words every day. So thank you.
love and hugs,
Amy :)

Tina said...

Your welcome wagon might indeed come equipped with a few extras, but with those extras comes something that keeps calling us back, and that is, the spirit of Zoey. I will truely value the great gift she has given me, that of hope and for showing me that nothing is insurmountable

Peter Olson said...

Beautiful pictures.

Zoey and all children (no matter how many chromosomes) are blessings and gifts from God.

"But Jesus called the children to him and said, "Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these."
Luke 18:16 (NIV)

Tell the story. Don't be afraid. Sure there may be fear, but there is encouragement and hope too.

a follower and inspired mother said...

while it's very true that your blog may bring some fear (I think all parents deal with this on some level), it also brings great inspiration. it shows resilency in the face of tragedy, love through the worst of times, and tenacity that says "we will not quit fighting no matter what life hands us". thank you for inspiring so many - little Zoey is such a joy and blessing to so many people who have never even met her.

Dana Janowicz said...

You are truly doing His work.

Anonymous said...

My daughter is 4, and a leukemia survivor. Although she does not have downs syndrome, I relate to your blog as just a mom with a daughter fighting for her life! I love reading about how well Zoey is doing - an inspiration for me and my little girl! Thanks for letting us share in your story!
Nancy in NJ

Anna said...

I just want to say that Gods "validation " is all our little ones need! He knows all about your little welcome wagon and well, to some, they can see where you were and where you are now.(if they stay long enough to read the end of the story!) THere is hope! There is joy at the end of this chapter of such a beautiful story, written by God through your family! I am thankful that we found you when we did, I heave learned so very very much and Im in love! (has she signed Potty again yet?!) I was just thinking yesterday about your story. Some others in Ecuador are completing their adoptions and had to get an interpreter for court. I thought to self, "yeah I'll need one too. Ive only learned enough Spanish to facilitate parenting communication. I could ask the judge to please not go potty in his pants but I dont think that would go over very well! ha ha ha!" Choosing to laugh in spite of where we are..... priceless!

tish said...

Congratulations, my Zoey Love!! Why do you give me chills from head to toe every time I read about you???

You are an example; you're an example to many people in various ways.

We're looking forward to celebrating with you on your very meaningful and special 3rd birthday!! :)

We love you!

Kiley said...

My son Hunter is in the same wagon. If all Hunter had was a bonus chromosome our life would be wonderful....but that was not road for us; so we make a new kind of wonderful with what we have been given. I love your blog and watching Zoey grow and develop and hope one day Hunter will do all those things too. Thank you for sharing all that you do.

Denise said...

I know you and I have had discussions about this very topic before and I once again just say that you are honest in your journey with Zoey and that is all you can do. You can't sugar coat Zoey's life for people because that wouldn't be honest. But I think you underestimate what all those beautiful pictures of her do. I know for me, everytime I see a picture of Zoey, I am filled with hope because she looks so happy and full of life. Yes, she has quite a story to tell in her short life so far but it is a story with a great "ending". Also, that is the beauty of blogland....all you have to do is to read a few different blogs and you realize that not every child has had to deal with as much as Zoey. Some haven't had to deal with much at all!! Just keep on telling your story honestly as that is the right thing to do. You help far more people than you scare!!

Just Another Ordinary Miracle said...


Tara said...

Well, I disagree. :) Yours was one of the first blogs I stumbled upon after Eon came on the scene. Your love and joy, in the midst of it ALL, shines through. I thought then, as I do now, that this is an encouraging (not scary) place to be. Don't be afraid to welcome the newbies! :)

Lisa said...

I for one am very grateful that the welcome wagon DID stop and leave a comment on our blog when Magdalena was born. Your family is an inspiration and a reminder that perhaps we too can rise up and deal with the challenges that come our way.

mandd3 said...

It can be really hard to let go of that fear. The 1 in 3 statistic you get when you learn your baby has TMD is downright terrifying. Like Kiley I used to think that when the time comes that all Tomas has is DS it will be a glorious day. Whether that times comes or not the days are already glorious. I'm glad I came back around, and I am glad Zoey is out there for everyone to see. She really does look adorable.

Angi said...

An interesting perspective I hadn't thought of before...I am not even sure how I found Zoey's page here...I just know that I love to read about her and how you guys are doing...I have said before, I don't have a child with a disability or any other "major" medical issue...I did grow up with two brothers with Downs...just something about the extra special ones that pull at my heart strings...still remember the day they told me my little girl was "likely" to be born with Downs...the only fear I had was that dreaded heart condition that I lost my brother have seen Maz is a fireball and the docs were wrong...and then I look at my spunky little Zoey...sorry Heather, had to put the "my" in there, LOL, love that little girl of YOURS!!

Jeana said...

Let me just tell you, Zoey's blog was truly the BEST welcome wagon for me. The beauty and grace that you all have shown as you've faced each trial, and also the honesty and acknowledgment that it is tough, but our kids will lead us through it all. So some may be scared and turn away, but for me I was inspired and continued to be by your little Angel and her amazing, beautiful family. Thank you for welcoming us into the "club", it has helped us through the past year more than you can imagine.

Anonymous said...

Hello adorable Zoey's Mommy! A few years ago I was told that the baby I was expecting has Down syndrome. I had no idea what it entails. After numerous tests it was confirmed that he does not have Down syndrome but everyone was convinced he has something wrong with his chromosomes. He was born a healthy little boy (against all predictions) and is now an even healthier almost three year old. When I read your blog I know why God spared me this, I am not strong enough to deal with the magnitude of this syndrome. But girlfriend, you are one of those special people that can!!! You are an inspiration to other people out there! And that little girlie of yours is so beautiful. Keep on being the lovely person you are. Greetings Marie Hattingh South Africa

Anonymous said...

Congrats on your graduation from this part of your journey Zoey. You are tuly an inspiration to everyone of us! New horizons await you. And I know you will be leaping forward!

Wonderful posting Heather.


blogzilly said...

Even though our situations are very different, one of the things that drew me to your blog was your direct approach, and to me, that's the best of who you are as a 'welcome wagon' to someone entering the world of caring for a child with special circumstances, whether it be Downs, CP, IS, Autism, Brain Tumors and on and on and on.

Shame to say goodbye to therapists you love. I really miss Bennett's first Occ Therapist. She was amazing.

sturpin said...

I totally understand. When I meet a new Mom, I want her to meet Joy, my sweet daughter with DS that is healthy as a horse, not Bell. How guilty that makes me feel! I love them both so dearly.

Kim said...

I came upon your blog one day and abosulutely love it. You have the most amazing family. I check updates daily. I have 3 girls twins 8yrs old and an almost 5 yr old, they love to check up on Zoey too. I love Zoeys expressions she cracks me up. I catch myself laughing out loud sometimes at her pictures I love them. We really love the videos..Hope she has a great Birthday party. Im sure its going to be great.

Anonymous said...

Hi There!

I'm just a lurker who found your blog from a link of a link of a link, LOL. I'm not in "the club" at all...I have no children and don't even personally know anyone with DS. True, I am an Occupational Therapist by profession but I work with the elderly 99% of the time. Come to think about it, that's probably why I've never written a comment before...what on earth would I have to say? LOL!

ANYWAY...I actually DO have something to say to this post of yours - where you don't know how to address this "new" family without freaking them out because of Zoey's history. However, let me preface it by saying this: I have my own syndrome called Russell Silver's a rare one that few people have heard of, which has caused me to be a very short-statured adult. Symptoms and behaviors associated with RSS are more pronounced in childhood and I've been "the voice of an adult who has the same disorder as your kid" many times over - they've said it's made them more sure about the future...less afraid to know that their baby can indeed grow up to have a bright future.

As the wonderful writer and supportive DS Mom that you are, it's a shame you can't "share the love" with this family who probably has so many worries and questions right now. Would it be possible to do it anonymously? Just say that you're a parent to a little girl with DS and "welcome to the Club," as it were.

Better than nothing?

Bea Braun said...

Heather your writing is so eloquent and articulate. I really feel like each time I read a post it is a chapter in a wonderful novel of inspiration, joy, love, and above all honestly. I just can't imagine that anyone who would read about Zoey's journey wouldn't be absolutely inspired. Not only by her amazing progress but by you and your family. There may always be someone who is not ready but don't underestimate the incredible influence you may have on that one person who really needs to see the amazing life that Zoey lives and the amazing joy that she brings to your family and all who know her. Follow your heart.

By the way. I had the wonderful privelege to test a 6 year old boy today with DS. He was sooooo adorable, and charming, and really cute and all I could think of was Zoey as a young adult and dating such a cute boy! I know she's only 3, but a cute couple they would make! I was treated to a big hug and two cheek kisses and I was hooked.

Googsmom said...

I love you guys!!


Congrats to Zoey for her graduation. On to bigger and better things now sweet girl!

Angela said...

I do a lot of work with the DS association in New Zealand and your comment has made me think about how many of our kindest caring members willing to support new families have children with DS with extra issues.
Maybe it softens your heart more

your are right it is hard for new families seeign how tough DS can be but many things seem tough in thsoe early days even seeing an adult with DS for the first time once they have a baby

it seems that families soon get over their initial horror, disbelief whatever and appreciate the kindness behind the contact

I have three children with DS
my older adopted daughter had no extra issues and has fantastic speech but my two sons had additional medical stuff (one had infantile spasms) I find that helps with new families to say it can be either way but still my children are all as loved as each other.
I have also met quite a few families feeligng guilty that their chidl with Ds is so healthy!