Thursday, April 5, 2012

looking back {can be a good thing}

Tonight I went back in time - 2008 to be exact - and read some old posts I'd written at the beginning of this journey, including my very first post


As tears welled (and continue to well) up in my eyes, my heart skipped a beat and my stomach turned as I was brought back to the fear, the unknowns, the grief. And as much as one would think I wouldn't want to go back to these days, how can I not. To me, they are the.most.important days to take it all in, to grieve, to be scared, to do whatever it is that one has to do to move on. Because it's the moving on part when things start to happen; and when things start to happen, it's when you can look back and realize how those fears truly do become simply amazing moments as you watch your deaf/hoh child learn to listen and then speak.

truly - simply.amazing.

and as I read my second post, these words stuck with me,

"Throughout my dad's dementia battle and taking care of him, I prayed for strength and God presented me with many obstacles, but I made it through. Was He preparing me for this? I'm guessing He believes I'm strong enough to take on Aiden's disability, and I will, head on, full force, and without a doubt, will be his strongest advocate; all while providing him with an atmosphere that he will always know how loved and special he is! I was meant to be Aiden's mommy and we will get through this - STEP BY STEP, DAY BY DAY."

I remember many days when I felt everything BUT strong; how I wanted to crawl back in bed and make it all go away, days I didn't want it to be my "new normal"

then a glimpse of today: 
  • {drama} "Mommy, mommy, mommy (insert fake cry), mommy, mommy the remote! (insert more fake crying) Where the remote mommy? Mommy help me. Mommy, mommy ..."
  • {tattling} "Mom, mom, mom, MOM! Kailyn not give it me! KAILYN give it me! You have share Kailyn!"
  • {hearing} "You hear that mommy? What's that mommy? I hear sound. What's that sound?" (and I have to listen extra hard to hear what he's hearing and think it's how he still points to his ear like I taught him to do way before he was even a year old)
  • {loves to hear} "Mom, mom! My CI! My CI falling off my ear! Help me mom." 
  • {love.} "Yay! Daddy's home work!" (as he hears the front door open)
  • {hide-n-seek} "I found you! You count now mom, I hide." 
  • {LoVe} "I love you mommy! Gimme hug and kiss!"
  • {tripleLOVE} "C'mon mommy, snuggle, snuggle." (as I try to get him into his bed)
and it's these simply.amazing.EVERYDAY.moments like these that I realize, I am strong enough now and I WAS strong enough then. This is by far a fly by night journey. Day by day, step by step has become our journey's motto ... and we still have a lot of work ahead of us. But because of this amazing technology, TONS of hard work, dedication, STRENGTH (through multiple avenues - mainly, CI/hoh parent support community), and unlimited HOPE, my profoundly deaf child is listening and speaking.

I recently received a message from another mom who is just starting this journey. She told me Aiden's story provided her hope. I cried. She made my day. This is what inspired me to go back and read some of my first posts. To go back and relive. I've been ecstatic about Aiden's recent progress, but have still had this piece of worry lingering in my mind. Going back and reading helped me realize just how far WE have ALL come, how much we all have grown. So THANK YOU. I needed these bittersweet tears, because sometimes, it is good to go back and remember. 

One of the first things that helped me in this journey was when our very first AVT, Dr. Morrison, gave me the following poem. I like to share it with others starting this journey as I think it's so important to know that it's ok to grieve, okay to be mad, but to also know in your heart, as you learn, as you grow, as you take those day by day steps, that the day will come when you can take a deep breath and smile. Just breathe. and smile. Because it will never be what you imagined and I promise, you'll be so glad you were the one chosen to experience it all ...

"God chose us to be Aiden's parents. How lucky are we."

and you wouldn't change a thing in the world ... because it truly is an AMAZING journey.


Welcome to Holland
by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.


Jennifer said...

Beautiful post! I couldn't agree more with every word. You are an inspiration.

Hunter's Mommy said...

I love reading each and every word of your posts, you help me get through the days. Love.

beckrs6 said...

Great post! Thank you for sharing.

Emily said...

Love that poem. I find myself going back and reading it ever so often - it makes my heart swell each time.

Also, LOVE this post. So beautifully written and I agree with every single word.

Bill and Shelly said...

Oh does this take me back, there are sometime I almost forget how hard we worked to get not only Allison hearing, but Jared as well. Now we are just living life, no more weekly AV therapy, no more. fighting with the school district to get them into the auditory oral program, we are just living life and it is wonderful. Life is so normal now and it is wonderful, but you know I would not change anything that we have gone through because if we had not gone through it I would not have met the amazing person that you are. You give hope to so many parents out there. Aiden is so so lucky to have you as his mommy!