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. 


Bittersweet. 


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 oh.so.cute 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.

Welcome to Holland

When I first met Miss Helen (one of Aiden's first AVT's) she told me about the poem, Welcome to Holland. Whenever I read it, it reminds me of how in the beginning I really wanted to be in Italy, and still, on not so good days, would rather be there than "Holland" too. Believe me, I truly wouldn't change Aiden for the world and this journey is so amazing, but fact of the matter is, it isn't always the easiest, and there are days I want to give up, crawl back in bed, ignore it all, AND get back on the plane and demand they take me to Italy - NOW. Today was one of them. But I don't. I can't. Those precious baby blues, big ol' smile, and sound of "maaaaam" keep me going. Who could resist?

Then I get a phone call. I received a call tonight from a mom in Texas whose sweet baby girl didn't pass her newborn hearing screening. She's now five months old, has been wearing hearing aids since about six weeks old, is in AVT, and well on her way. We talked about the devastation felt when hearing the words "didn't pass", the "friendly", yet very awkward remarks on how "things could be worse" from family and friends, the "I'm so scared" of what's ahead. This is what I wanted from the get go ... to help newly diagnosed families in any way possible-it's what I love about this community of "friends". So, I emailed my new friend some resource links, some blogs to look at, and a big hug. Tomorrow I'm sending some pilot caps.

Then I thought about this poem and wanted to share it too. Even when first read, the thought of not being in Italy was stomach turning for me, but is Holland truly that bad? I've found not. In fact, I've found Holland to be just as beautiful and rewarding, it just took me a little bit more time to realize what a great trip it truly is.

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.

BW Get Together and Hangin' with Lucas

A couple months ago, members from the Yahoo group CI Circle started talking about getting together with CI families in the BW area. What a great day! I got to meet Lucas and his parents; Jodi from An American Mom in Tuscany and her adorables Jordan and Sophia; George and his family, "teacher Marny" (from CICircle) who is such a wonderful resource and teacher for all us CI families, and many more wonderful families ... including one whose daughter is bilaterally implanted and at age three knows TWO languages! It was great too, because my friend Michelle was in town from Texas for her son's activation at Johns Hopkins, so they got to enjoy the festivities as well!

Lucas and Aiden getting into mischief right from the start.

Sean found the cookies!

me, Jodi, and Jen

It was wonderful to finally meet the infamous Jodi! She's just as outgoing and beautiful in person! I wish I could've sat and chatted more with her and Jordan. He had a beautiful accent and I would've loved listening to his perspective on the CI.

Jodi and Jordan

and huge THANKS to Jodi, for getting Batman and Robin to stop by and make an appearance ... in their BATMOBILE!! The kids loved it!

After the early afternoon get together, Lucas' family came back to our place for a play date and a late afternoon BBQ. Lucas' mom and I "met" last June through the blogging world and have always kept in contact through each other's blogs. We have gone through sad and happy times together. I have shed tears of joy, celebrating long distance in Lucas' successes. We have supported each other through our journeys for over a year now and it was absolutely wonderful to finally meet her and give her a huge hug! In our comments, we always said one day we'd drink that "Dutch" beer together (in response to the Welcome to Holland poem) and cheer our boys and their journeys. Well that day had finally come, and although it wasn't exactly Dutch beer, it was just as good!

Lucas' daddy was also with them, and what an amazing man he is! Lucas is a lucky little boy to have such an involved father! He would even stop Aiden to put his CIs back on! I loved it.

Then we have Lucas and Aiden! WOW! What a pair they were! So similar in so many ways ... they both have LVAS, both have blonde hair/blue eyes, both around the same height/weight, but even better ... they are both so outgoing, always smiling, constant noise, into everything, and just ready for fun!

In fact ... they were so on the go, that it was hard to get a good shot of them sitting still together!

"Ta-Da!"

"C'mon Aiden ... take my hand, you can do it."

"Did you hear that? I heard that!"

Lucas' smile melted my heart! And that's all he did, was smile! He's such a happy little man and such a great listener! He would blow kisses, say bye-bye and wave, say down and just laugh and laugh! At one point he had Aiden's sister Kailyn tackled on the floor sitting on top of her screaming in delight. Lucas' mom and dad are going to be running right along next to him before too long, because he was doing some great walking too! I kept trying to get Aiden to watch him hoping he would catch on! Maybe next time!

While Aiden and Lucas slept, us adults finally got to sit down and relax. It felt like we've been friends for ages and we can't wait to have another Lucas-Aiden playdate.