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!