It Has A Name....

 

There really wasn't a moment that I didn't know that Ethan was something different - I hesitate to use the words 'special' or 'not normal' because they are so loaded with negative judgement - but looking back, I knew, in my mama heart that the road ahead would be difficult, and that it would be a struggle at times.  I also knew that I would do whatever it took to be on that road with him every step of the way.  I remember one quiet moment in particular when he was just a few days old.  He was in one of those exhausted, nursing induced comas and I just sat and held him, and cried.  And I distinctly remember feeling bittersweet about him, recognizing that that moment was the most protected from life that he would ever be.  It made me feel acutely sad and helpless and small.  

Yesterday was the end of an era for me.  A little over a decade of parenting in the dark.  Of knowing deep in my bones that some things were not in alignment for Ethan, but unable to make anyone really hear that.  We were told over and over that it was a stage, a phase, a pit-stop on the highway of growing up that would pass.  We did everything we could for him without really knowing what it was we were dealing with.  And we did a lot of those everythings right.  So it was not a shock, or defeat, or even a disappointment to hear the experts say that yes, in fact, your son does have Asperger's Syndrome - an ASD.  This news was received with relief.  For him.  For us.  Today and going forward we have a new set of tools in our basket -  understanding, support, funding, but most of all, we have validation.  We aren't crazy overprotective parents with a difficult behaviour problem child.  We aren't permissive parents with a child run-wild.  We aren't inept, or undisciplined parents with a demanding rule the roost child.  We are parents who desperately love this boy of ours, who want what's best for him, who want him to grow up and be a productive member of society.   Whatever it takes to make the dots all connect for him to fully realize his potential - that's what we will do.  

Today is not about mourning the loss of what might have been, or bemoaning what will never be.  I've spent a good deal of time the last 11 and a half years doing that.  Today is about celebrating a new beginning.  And August 19th is the new anniversary of the day Ethan was knighted an Aspie.  A celebration of embracing what you really are with all your strengths and weaknesses. 

Because in the end, that's all we can really hope for - knowing oneself and growing from there.

Comments

[Francesca]

Your posting made me cry, because I remember those words being spoken to me by you. I can feel your pain, and now your relief. We are all a little Aspie from time to time- just like we said. Ethan was given to you, your family of four- for a reason. One day your son will have made a huge impact on the world- thanks to you. Who wants normal anyway, normal is over rated and what is normal anyway!

Every family has their own, and their is no perfect life! So if anyone ever dare judge you or your son, send them my way! I will set them straight!

There is not a book on life...nor one perfect resource out there. So research, talk, accept and deal with things as you see fit.

My one word of advice is not to obsess about it. Despite what any scientific research may say, Ethan is unique in everyway, just like every child! So live your life, allow him to live his. Take it all with a grain of salt, he will be what he is going to be providing you set a clear path for him and your family. Do not make more work for yourself. Smile everyday, and definately do not give up that wine :)

You are one hottie of a mommie and I love ya. Inside and out!

xxxxxxxxx
Francesca your bff- no bffl

[Susanne]

Michelle,
So glad the waiting is finally over.
I especially love your last paragraph. Finally having a diagnosis does not have to label him with only weaknesses but as you said it is a day 'of celebration of embracing what you really are with all your strengths and weaknesses.' Because certainly Ethan is full of many great strengths that now you and Erin can be fully equipped to draw out of him. Ethan is blessed with 2 amazing, patient and loving parents that will help him reach his full and magnificent potential.
Blessings.

[Fabricated Goddess]

Thank you girls....tears over here....of love, of gratitude and of relief.

We are as equally lucky to have Ethan. He is a gift and makes me grow every day.

[Sherri-Ann Rast]

I can't even write this without tears streaming down my own face. Watching you walk this out, praying with you, crying with you, being frustrated with you and for you!!!
As I said before, you are an amazing Momma! I am so proud you have the strength to stand up and say "NO!" This is MY son and I know what I am doing is best for HIM! Against much objection and many contrary opinions. You have held your ground, prayed for answers, cried our to your Father. But through it all you have displayed much grace, and dignity. Not only of yourself but for your son and your family.
I love you my sistalah<3
and I'm here for you always, xoxo

[Fabricated Goddess]

I could not have done this without your love, support and encouragement. I wanted to give up and give in so many times. But there were people along the way who said 'No, you are not crazy. Yes, you can do this. No, you can't quit. YES, I am with you, in spirit, in prayer AND in person' I have always been blessed with great friends who held my hand, propped me up, and cradled my heart.

I can never thank you enough. Ever.

I love you!

And I have those streaming tears too.

[Courtnay Taylor]

The end of an era, and the beginning of a new one. You have a wise and sensitive "momma heart", and you have been Ethan's greatest advocate and champion all along. He is blessed to have one such as you, my dear friend.
Anything, anywhere, any time...I'm here.
Love you!

[Monica]

Oh my Michelle you are a treasure Ethan is very lucky to have you as a Mother and friend.
Your mom and i are behind you all the way, you now understand how we have always felt about you and your brother, although in different ways but always with no holds barred LOVE.

You are moving forward as is Ethan and oh god don't mforget Finn as if you could he will not let you.

Love and support DAD

[CuriosityKiller]

Oh Michelle, you are such a wonderful mom. Ethan is in good hands. My eyes are teary but I can't help but smile at the love that is inspired by your life.