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.

The Hearing Aids are On

Today was Aiden's FIRST hearing birthday! He was up at 5:30 am to eat and was all smiles after that! He knew it was his big day and that I needed those smiles to help me through the morning! Our appt. was at 8, so after getting Ryan & Kailyn out the door, Mike and I headed to the audiologist. The appt. went great - they gave us Hearing Aid 101 class (how to clean them, the parts, how to turn them on/off etc) then showed us how to put them on Aiden, which he didn't like one bit! His ears may not work, but his lungs sure do! They fit perfect though! He didn't have much of a reaction, but like the audiologist said, it's like his new "ears" are just being born and are only one minute old. Just like a newborn won't know his spoken name, neither will a baby just hearing for the first time. Again, they don't know yet if he's just getting vibrations or if he may be hearing even a little bit. We're going to go with option 2 and believe that he is hearing, even if it's just a little bit! Even if he's not, we're all going to continue on like he does! He needs to wear them all waking hours, which right now, depends on what day of the week it is!


He took a great nap for me today, so I didn't get the hearing aids back on him until after his bath tonight. Everyone was gone, so it was my time to check them out on him. They're so small and I hate pushing the earmold into his ear, but the snugger you get it to fit, the less feedback (buzzing noise) the hearing aid lets off. Look at how cute he looks!


He was fussing after his bath (probably because I was trying to stick some foreign object in his ear for the first time!), but once I finally got them on he calmed down and then him and I just sat and chatted. He was smiling and cooing back with me, which he usually did before the hearing aids, so I performed the "binky test" to see if he'd stop sucking on it when I talked to him and he did ... multiple times! I barely have a voice right now, thanks to Texas' lovely allergy season, so my voice is real deep and it's hard to talk ... but I didn't give up! I even tried to sing him a few songs - no tune what-so-ever! He didn't like my singing very much!But, when I stopped singing, he got to be all smiles again. That's okay ... I wouldn't want to hear me sing right now either! Here are a couple more of my binky baby ...

So, the day was great and Aiden started it by teaching me a lesson - baby smiles cure all! I had all those worries for nothing. I really thought the sight of the hearing aids on him would make it real and get me down. Well, fact of the matter is, this is real, my son is deaf - no denying it. And the hearing aids, well, they make me realize we are on our way to a miracle. This is our first big step in our pursuit to let Aiden speak and listen. I'm already so proud of him! We have many steps to go and we're ready for the hike, but for now, we're all in step for our journey with hearing aids!

Step by Step, Day by Day

Yesterday I wrote about how our journey started. What I didn't touch a lot on was how I've been feeling, or want to feel or confusion about HOW TO FEEL. Isn't that weird ... questioning myself HOW I should feel?! But I did, I still do, ... day in and day out.

The first day the audiologist told us Aiden's hearing loss was permanent, that he was deaf, I cried and on the way out of the office I felt guilty crying, because other than Aiden's ears, he was a healthy 6 week old baby. I told myself I had to make this alright in my mind, I had to be strong - for Aiden, for Ryan & Kailyn, for my husband, for everyone I was going to have to tell "my son is deaf." And I held a lot of it in. When I got home that day I went grocery shopping and on the way home I got stopped behind a bus and there waiting by the bus was a mom. They wheeled a boy off the bus in a wheelchair, his head strapped to the back, his hands strapped down, and very well seen that he had a lot of challenges. Isn't it wierd the way God talks to us! Then I went home knowing we were so lucky it's just Aiden's ears, that he will be able to function in our world, yet inside I still just wanted to break down and cry. I talked to my mom and sister-in-law Tus that night and told them the news about Aiden's ears. I cried a bit, but again found myself protecting them and wanting them to believe I was OK when I wasn't. I wanted so bad for my mom to be there and hold me, cry with me, and tell me everything was going to be okay. I wanted so bad for Tus to come over and have a drink with me and let me cry my eyes out and agree with me how bad this all sucks! Because it does ... it just sucks!

The next day I jumped on the internet and started reading parent posts and saw a lot of parents felt the same way I did ... I read these and realized it is SO okay to feel sad and mad and scared and ask why and all those crazy mixed feelings that hit you like a ton of bricks! I cried ALL DAY! I tried to protect my loved ones when I was the one who needed them. I called my mom that night and let her know how I really felt - scared, lost, SO SAD, and I cried to her. By the end of our conversation I felt better and like she said, "we'll get through this like we have everything else ... step by step, day by day."

I went through a lot of ups and downs over this for a couple of weeks. I'd sit holding Aiden and just cry for his loss. I couldn't imagine having a disability in an already hard world. Everytime I looked at him all I could think about was his hearing loss. It tore me up that he could not hear my voice, my songs to him, our family's laughter, music, the sounds of nature, our cat's meows ... I was scared for him. I had to keep reminding myself, he doesn't know what it is to hear, so he's not scared without it, I'm the one scared without him having it! I prayed and prayed and prayed for a miracle ... for that test to be wrong, but somehow knew deep inside, my precious baby boy was truly deaf. And while dealing with my sadness for him, I felt this huge guilt inside, constantly questioning what did I do during my pregnancy to cause this and kept wondering what I could have done differently.

After a few weeks, I started to feel more of a peace within me. My friend Jenny was huge support and helped me each day sharing a new resource (which I tucked away for when I was ready), sharing positive energy, sharing herself, and her busy time to make sure I was ok. She is amazing! Reaching out to more friends and family for prayers, love and support truly helped as well! I was happily overwhelmed with their responses and reading their emails/talking to them got me through my days and helped me realize I wasn't alone. I don't feel as guilty anymore either. Every once in awhile I still sit and wonder why, but I could drive myself crazy asking that question! Instead I focus on what I can do now ... there's no changing the past! Aiden was given to us - and I wouldn't change a thing about him! God sent me another message that reminded me how lucky I am. This was the day Aiden's hearing loss was confirmed, the day we went to hear that it was all "just fluid". When we got home, I was reading through the paper, looking at the obituaries (like I always do), and there was a newborn who passed away. His name was "Ayden Blake" and what's even more bizarre, is this precious baby was born the same day as my Aiden, March 17th, 2008. I cried for this baby's mom and said a prayer for her... again, how lucky am I!!!

I was sad for Aiden's hearing loss, but through all this, I couldn't be happier with the little boy in front of me! It's amazing the peace an 11 lb. little boy can provide! Everytime I hold him close, talk with him, sing songs to him, I know that even though he may not physically hear me, he knows my love for him, he feels it, he sees it, he senses it! They always say "actions speak louder than words" and how true that is to our world now! I am so blessed that I was given Aiden! 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!

Our Journey Begins

I started creating this blog after learning so much from reading blogs from other families with a hearing impaired child. I have learned so much from people I don't even know, yet feel so close to them all! I've never done this before, but I believe it will be good in my healing, good to keep family and friends updated on our son's journey, but more than anything, I hope this helps ease another family's worries who may go through the same thing we are. Now, Aiden's journey to hearing begins.

March 17th, 2008 - Aiden's Birthday! -I was induced at 9:30 a.m. and Aiden was born before lunch! The labor and delivery went great! We couldn't believe it when they told us our baby was 8 lbs, 20 in.! He had an Apgar score of 9 out of 10! We had a perfect little baby boy and he was absolutely beautiful!!

That day in the nursery, they came in and did a hearing test - I didn't even know this was required in Texas for newborns! As they performed the test, I saw looks of concern on their faces, "It's probably just fluid, we'll come back and retest tomorrow." Which they did ... same results, same answer, "Go home and enjoy your baby, give it a couple weeks for the fluid to clear up, then come back and retest." So we did just that - we took our newest bundle home and just enjoyed him. We worried a bit, talked about it here and there, but just knew when we brought him back, everything would be okay. How could it not?! We don't have any hearing loss in our family ... Ryan & Kailyn hear just fine (when they want to anyway!) But when we brought him back for the third test, he failed again. This time I cried and worry set in. They set us up an appt. with an audiologist and said "they'll do a better test, it may be just fluid!" Of course it was just fluid! This was the only option as far as I was concerned!

April 15th - First Audiology Appt. - I was wrong ... there was another option God had for Aiden, and that was deafness. On this day, my precious little boy was diagnosed with permanent profound hearing loss in both ears (meaning, if he was next to a plane on the runway getting ready to take off, he couldn't hear it). That day in the audiologist's office is still a blur and I get tears in my eyes just thinking about it. I had a good pregancy, a good delivery, everything was so right and all I could think of was "what did I do wrong?!" All I could think was they weren't right - how could they tell he was permanently deaf in both ears with just that one little test?!? They didn't even look IN his ears! Everytime I held my baby thereafter, I felt as though my perfect world with him was shattered.

I didn't tell many people at first, saying it made it real. One of the first people I did tell though was my dear friend Jenny (who is also the speech therapist where I work) . She set me up with a world of resources. She called everyday to share something new. She let me know, EVERYDAY, that everything was going to be okay. So I took this time to research and learn as much as I could. I emailed our audiologist and asked a lot of questions (who emailed back answers I DIDN'T want to hear!) The first week was a very hard one! I cried a lot ... everytime I held Aiden I felt a loss for him. I finally reached out to a lot of friends and family for prayers, love, and support and it was the best thing I could have done! They sent encouraging words, gave huge hugs, sent names & numbers of people who have been through similar situations. It was then that I started feeling more at peace and started having more good days then bad and coming to the realization that even with Aiden's hearing loss, everything is going to be just fine. (and still 4 weeks later Jenny is still finding me great resources, even if it is the lady working behind the Target register wearing an implant! : )What an advocate she is for Aiden! She is amazing!)

May 7th - ENT Appt./May 8th - 2nd Audiology Appt. - Here is part of an email I sent to friends/family that gives a good overview of these two appts. Oh what I've learned in the last few weeks! I feel like I could teach a class!!!

We had our appointment with the ENT on Wed. and then a follow-up with the audiologist yesterday. We really like Dr. Bauer, he was compassionate, yet straight forward and great at explaining all this as well as listening/answering questions. He did tell us that the ABR tests (the one that showed Aiden's hearing loss) are very accurate, and confirmed that Aiden is deaf in both ears. He also explained that Aiden's type of hearing loss (bilateral sensorineural profound hearing loss), is the type we want to him to have, if he is to have it. They believe that Aiden's loss has to do with the cochlear hairs being deformed (which transmit sound to the auditory nerve which then transmits sound on to the brain). They can fix this with a cochlear implant which takes the place of these "hairs". We won't know 100% if he is a candidate though until his MRI, which Dr. Bauer will do at six months (because of sedation). The MRI will show how his cochlea is formed as well as show if Aiden has the auditory nerve in both ears. If the auditory nerve is missing, he will not be a candidate for implants and will not hear (they say this is rare).

We confirmed his hearing loss yesterday with another ABR test and an OAE test (which showed again, that the loss is coming from the cochlea and makes him a good candidate for implants). They also fit Aiden for hearing aids, which will help his auditory nerve get used to sound vibrations (like working a muscle) as well as get him used to wearing something on his ears. They also set up a speech therapy referral, which we will start in the next couple of weeks. So all in all, since Aiden does have permanent hearing loss, these were positive results. If he is a candidate, Dr. Bauer will implant our baby's first cochlear implant around 12 months and he will start hearing soon after!

Ultimately we wanted to hear that Aiden's loss was due to fluid and they could fix it. We didn't hear that, and somehow knew we were not going to. We have been coming to terms with it all and know we are so lucky to have this precious little guy in our life - he is an amazing child!! How lucky are we - God gave him to US!

Please continue to pray for Aiden and that he is a candidate for implants and that we find the wisdom to make the best decisions for our baby and are his best teachers! I know Aiden will ultimately teach me so much more than I will ever teach him! I have so much faith and hope and just know everything is going to work out for our newest miracle!

So here we go ... opening a new chapter in our life, not only with the arrival of Aiden, but the arrival of an unknown. I know in my heart that everything will be okay, no matter what. God has given us a beautiful little boy who will be amazing and who will not be held back - as far as we're concerned, his world is wide open and he will achieve all that he wants without limitations! I will stop at nothing to always do what is best for him, just as I do for Ryan and Kailyn! Step by step, day by day, life is a journey, and this is Aiden's.

(Here is my bundle screaming loud enough to wake the dead (he doesn't like his hat!) and peacefully sleeping, which he doesn't do much of! Isn't he so cute!?!?!)