Friday, September 14, 2012

healing and hope

"It takes a village" most people know this quote in regards to raising our children and the support, outlet, and connections we need when raising our kids.  For me, it rings true right this moment, because the outpouring of support both online and within our family and friends is priceless to me.  In my dark days, my darkest moments, I am left pondering the questions of, "will I heal?"; "will I have hope again"....I can say yes, thanks to so many of you.  There is an online community of special needs moms that I have reached out to numerous times, and they share and dream and hope with me.  They offer you a virtual hug or shoulder to cry on.  And what is most important is they get me.  They get the dark moments that only a few people truly understand.  And to have the ability to find those people, well that's magical.  Years ago, I sit here and think, how lonely that would be, no internet to find and reach the people who can "get you".  It's priceless.  The first week after Everett's diagnosis I was cursing the internet and research because sometimes it's better not to know.  And in his case, I believe that, I wish I didn't, because at this moment in time, it really doesn't matter.  It doesn't help me to stare at him like a science project, wondering when the shoe is going to drop.  
I have to also really give an amazing shout out to my favorite blogger.  Kelle Hampton is the real deal.  I have loved her since the day my dear friend gave me her blog for hope, the day we found out about Nolan having down syndrome.  Since then I have healed my wounds and found inspiration and I attribute so much of my growth on this journey to her.  Well, when I found myself again in the trenches and dealing with EJ's diagnosis I reached out to her, as I had privately months after Nolan's birth, at which time she shared her private email.  So, I put it out there that I would love to talk with her on the phone and needed something to pull me through.  She called within two hours and sent more messages of heartfelt encouragement.  Now, for those that don't know her, you wouldn't know she is HUGE, I mean like Today Show; New York Times best selling author to an inspiring, raw and uplifting memoir-Bloom.  So, I didn't exactly expect her instant willingness to reach out.  Especially when she told me she was pregnant, she just announced it's a BOY today! :)  So, I felt awful to worry her mama heart after hearing my story, which I am sure it did, since we already shared children with Down Syndrome.  Either way, it was amazing and I felt reassured that there are in fact incredible people on this earth, who actually are that cool.   
And to my friend Amy.  We have only met once.  You had recently given birth to Aron and had your own worries and fear consuming and engulfing your heart.  We met for dinner and bonded, for life it seems.  I know you continue to share with me your gratefulness to me and mention my kindness in reaching out to you; but you-Amy- are MY inspiration.  You remind me how sharing our personal journeys is so essential and maybe it only touches one life near us or millions around the world.  Regardless it's importance is not measurable.  Only you and I know the true value of that meal; it nourished both of our souls and continues to live on.  Your sweet letter that I read and shared with Jeremy is beyond words.  I am so honored to be a part of your story and so proud of you for reaching out and sharing to another mama in need.  All of us at some time or another will find ourselves on our knees and it isn't so lonely with someone there next to you.  Thank you. 

Lately, isolation is good, and what I mean by that, is family time, hanging with the kids, keeping us all busy.  And boy has it been busy with two birthday celebrations; which around here are a rather large occasion; it takes some work and that's been good for me.  But also, the first day of heart bleeds and expands at the same time; the excitement and anxiety of it all is enough to harken back to the days of worry you had as a kid.  When you remembered that feeling of walking down those long halls and "huge" classrooms, only now to see them in your adult life and realize their true miniature size.  It's all perspective after all.  I love I mean LOVE seeing the kids grow and  explore with each new year.  And as they slip through my fingers I realize truly how quickly it all goes.  My big FIRST grader.  I can remember rocking him as a screaming infant just moments ago.  :)  
You know the greatest gift about a child with special needs isn't just that you value every little milestone that "they" do...but you notice and cherish your typical children's milestones that much more.  I have never admired our eldest two more than right now.  They are such incredible kids.  I mean seriously.  They are soft, thoughtful, empathetic and caring.  Such bright rays of sunshine to my heart and day,  I don't take a moment with them and wish it away...umm scratch that, Graham called me ugly the other day in a fit of rage...hahaha....but you know what I am saying.  I cherish it; their lives; in ways I know that I wouldn't have.  My irritation levels creep in with lack of sleep and depression of our life situation;  but mostly, I just see them and burst with pride.  The way they play non-stop when they see each other at the end of the day; and ask each other, "did you miss me?".  I love how they each run in the house and show each other what they made for one another at school that day.  Not for me or their dad. Graham made Audrey a necklace with the love sign and put it around her neck and said "I made it for you Audrey, because I love you so much and miss you."  I don't mean to paint a picture of all roses, because it is most certainly not.  
But, honestly, they are pretty damn cool.  
Then to is watch them adore their brothers....priceless.  They show me how to truly love.  Without any signs of judgment or caring of how someone looks or lacks the ability to walk or talk; they could care less; they adore Nolan.  Sometimes I imagine how much fun they would have with Nolan if he were a typical 2 year old; how amazed they would be with what he would accomplish.  But you know what? They wouldn't.  They would love him exactly how they love him now, for who he is.  Audrey was feeding her doll a bottle the other day and Graham asked how old her baby was.  She said "TWO!"  I explained to her 2 year olds don't drink bottles.  She then said to me, "well, Nolan drinks bottles."  I said, "Remember Nolan has down syndrome so there are some things he will do more slowly, that is why he still drinks out of a bottle."  Graham shouted, "Audrey your baby could have Down Syndrome!"  And she said, "YEAH she has Down Syndrome!"  I love kids.  All of them.   Forget physical therapy, OT or ST, these are the best therapists in the world.  They love to teach him new signs, help him walk or crawl and sing songs and dance.  

sooooo big!

ummm...somebody smells under here!
Miss Audrey and her awesome teacher! 

And so with those first days, there were many tears shed.  Tears that the years are passing.  Tears of pride that our babies are growing into such fun, big kids.  Tears that my days will be much more empty without their chitter chatter and interesting topic of conversations.  Tears that Justin Bieber won't be on repeat all day long, oh oops, no tears about that one!  I worry about Nolan looking at me like, "really, this is all you got?" I have had a lot of fear to be alone with EJ and Nolan all day.  Not knowing where to fit.  There isn't a group I can find of stay at home mom's with kids that have special needs, so thinking I need to make one!  It's tough, Nolan doesn't like his stroller and can't really enjoy a park with EJ needing to be held; all of my friends kids are older and are typical and well don't find it nearly as fun hanging with Nolan as G and A do.  So, we trudge forward.  A new challenge to find a new normal.  To find a place that doesn't feel lonely or odd, but comfortable and inviting.  I am confident I will.  And if not, I will create it.  I am starting to realize that I am strong enough to do this and do it well. :)


  1. Before Bridgie could walk, I always told people it was like having a 10 month old for a whole year. A 10 month old who still needed help navigating, needed to be held and carried, needed help getting their legs into and out of the swing holes and the grocery cart holes. Add into that a 10 month old with low tone who does not 'hold on' while being held, makes for one tired Mommy lifting, squatting, and carrying all day. All this to say, I feel your pain about trying to get out to the park and other places with Nolan AND a new baby.

    You have made tremendous gains in your outlook in such a short time. :) I will keep praying for you.

  2. I have goosebumps. I can only imagine how many people you are inspiring right now, Grace.

  3. I so agree with the comment above, I think you are inspiring many people with your honesty and by sharing your thoughts and feelings...I know you are inspiring me!
    I love what you said about if you cannot find that place you are looking for, you will create it. You have such a lovely family :)

  4. I wish I would have known how many incredible people I'd meet when my life took this Down syndrome detour. This journey might be one of the coolest road trips of my life, one with a busload of people who might never had connected otherwise. I'm happy to take the wheel if you need to lie down in the back for a while. I know I can find plenty of folks who are happy to navigate, even though the GPS isn't working and map might be a bit unclear. We will find our way! XOXOX


Come on- spill it, share it, scream it, shout it, I want to hear it...really!