New Beginnings

As we approach Aiden's third hearing birthday (and fourth birthday - WOW), I have to say that I never thought we'd be where we are today. I envisioned that all therapy would be behind us, except for check-ins here and there; that he'd be talking in full blown sentences, excited to tell me all about his day at school; that he'd be making up stories with details galore and talking so fast I have to tell him to slow down; that he'd be singing songs from front to finish as he danced around the living room. I envisioned he'd be at least caught up, if not beyond, his hearing peers, both receptively and expressively. To me, this wasn't a doubt. It's where we'd be.

But I was wrong. What I didn't envision is that he'd have social/pragmatic challenges; I didn't see us in weekly OT sessions for sensory processing and praxis challenges that not only effect many motor tasks, but things (that seem) as simple as multiple syllable words and sentence production; that we'd need a speech therapist on top of our AVT in order to close the gap on articulation challenges and to help him expressively speak, what he knows, more intelligibly. I never knew just how much work it is to talk and if all the "systems" aren't planning and working together, talking is one of the most difficult tasks even for a hearing child. I didn't envision awesome speech (and balance) on some days and pure mumble-jumble (speech and balance) on others.  I didn't envision hearing the words, "I'm just not sure what's going on. He's such a good listener, he gets it, he's a hard worker, and he's such a happy child, BUT SOMETHING'S MISSING." I certainly didn't envision that we'd possibly have another three years of therapy ahead of us. THREE MORE YEARS.

because I've been working my ass off. and it's SO frustrating.

What's crazy about all this though, is his hearing and listening skills are AMAZING! His technology is right on. He hears me as I yell for him from upstairs in the back bathroom and he's downstairs watching tv. He can repeat all his lings, each ear on it's own, from 10-12 feet away; he repeats all the phonemes pretty darn perfectly; he hears whispers, and well in noise. Receptively and cognitively - he's well ahead. He gets it.

I started writing this yesterday, as a "whoa-is-me-andmybaby" post. It's bittersweet hearing about other {amazing} kids implanted around the same time as {my also amazing} Aiden, speaking circles around him, graduated from therapy, and well caught up to their typical peers, all knowing we still have quite a road ahead. But, this is OUR JOURNEY; it is what it is, so we continue to move forward, and trust in our hearts he will get there (and he will).  Sometimes I feel I'm all over the board with Aiden. Like nothing's good enough for him. I promise you, it's not that. Yes, I am VERY particular when it comes to any of my kids and their education and success, but I believe every parent should be. But this is different. If it's not working or we're not seeing the support and fight needed to get him to where he needs to be, it's time to move on. We don't have time to "wait and see". Time is of essence at this stage and most importantly, I have to listen to my mommy gut. (and yes, I'm a bit of a control freak).

So we're making some changes.

and here's a glimpse at our new beginnings:

• changing his AV therapist - not because we don't love his therapist (we do), but logistically, on both sides, it wasn't working, and therefore lacked consistency. We will now have a WEEKLY session via the internet with a new AVT. There are so many positive and exciting things about this! More to come.
• changing his school - this sounds crazy, especially with his lack of language, but we're taking him out of his current oral deaf-ed program (which is 5 days a week all day) and placing him into a preschool which is 2 1/2 hours a day for four days a week. He will be the only deaf kid in his class. and it's a good thing. When I get him ready for the bus, he says, "NO mommy, new school!" He loves the new school and we've only visited twice. More to come.
• adding in a weekly (or possibly biweekly) speech therapy through our insurance - he had a wonderful speech therapist at his current school, but he was only allotted 15 minutes a day, 3-4x a week, and usually not one-on-one. I'm also working with his awesome SLP from his IFSP (before 3yo) days, to include her on his IEP to work with him one-on-one once a week, but also as a "push-in" in the classroom with him a couple days a week (in addition to a TOD). So far, the district is very open to requests and ready to work with us to meet Aiden's needs. More to come. 
• continue with our wonderful OT - there's so much I've learned from her about Aiden in the last eight months, and most importantly, Aiden is making HUGE strides. Six months ago, he couldn't stand on one balance bucket, now he can walk across six, WHILE TALKING! I tell her we get a free speech therapy session too when we see her. She's heaven sent and we still have quite the work ahead of us. 
• SOLID at home one-on-one sessions - with the change of school times, I will be able to dedicate myself to him alone. It was near impossible to work with Aiden at night. He didn't get home from school until 4pm, the same time R and K got home, then as I tried to help K with her homework, keep R on track doing his, getting dinner on the table, running to all their after school activities, bath, and bed, there was VERY little (if any) one on one time with Aiden, unless it was reading him his bedtime stories. Changing schools gives back our precious one on one therapy (aka playtime). and I think it's key to moving him forward.

We also have a neurology appt set up in May, just to see if there is something we're missing and hopefully get some answers. Maybe, just maybe, it will help us better understand his EVAS or if there's something else going on and possibly help in our plan going forward. I don't know, only hope.

Three years ago, there's no way I would've thought we'd still be here, with all these therapies, still trying to figure out why some days he speaks in clear 5-6 word sentences, but others we can barely understand a word he says. Why some days he jumps down the steps, but others he needs to hold my hand to get down. I can't waste my days worrying though, I have to keep my faith and know in my heart that he will be okay and that one day it will all come together - verbally, socially, physically. We will keep on keeping on. No regrets.

oh, and by the way, there's one other thing I envisioned almost four years ago - my child walking into a mainstream kindergarten, not feeling different, fitting in right along with all the kids -

and he will. 

A Special Community

The day I started this blog, was the first day I took a deep breath, somewhat a sigh of relief, or a sigh of acceptance more to speak, over Aiden's deafness. It was after spending days upon days reading many other's stories reassuring myself everything was going to be okay. It was the day I said to myself, "OK, here we go." I started this as a journal, not only for myself, but for others. I wanted to be true to myself and to anyone who followed my emotional and physical roller coaster, of what was to be Aiden's story, on our journey to help him hear and speak.

I open(ed) my heart, sharing my deepest thoughts, heartaches, simply.amazing moments, lessons learned, milestones reached; sharing each small step taken, each set back, each triumph, has all helped me release my feelings. It was (and still is) my best therapy. In the same sense, I wanted to reach out to other families who were going through the same thing (whether before me, with me, or after me) - I wanted to be a part of a community who knew what I was going through, but even more so, to give back to a community that helped me see the light and provided me the strength I needed to move on.

I hope(d) Aiden's story would provide someone a sense of relief, a sense of "it's ok to cry my eyes out and say this all sucks!", a sense of HOPE that their child (or grandchild or niece or nephew or friend) may hear and speak one day too.

I want(ed) to provide an avenue of lessons learned and resources, but more than anything I want(ed) to provide the truths of a journey that is not an easy one, not a quick one, yet a simply.amazing one with a lot of hard work and true dedication.

Every once in awhile I'll receive comments on my blog, comments on Aiden's You Tube videos, a Facebook message, or an email from a new parent/professional/relative. Sometimes the emails are asking specific questions, sometimes they're thanking me for sharing Aiden's story, other times they're introducing themselves and their journey; a lot of times they are filled with emotion and I wish I could just reach out and hug the person. Each one touches my heart. Each one means a lot and I can only hope that my words back provide some sense of relief and guidance. There is a whole community out there once you become a parent or relative or any acquaintance of a deaf child. A whole new community to take a hold of and never let go.

We provide each other support and hugs when another is down - whether it's someone just starting the journey or it's three years into the journey and it's just one of those "I know my child's deaf and it still sucks" kinda days; and we provide each other high fives and more hugs when a child meets a milestone; we share tears in both happy, sad, and angry moments; we provide each other ideas when we feel like we've hit a brick wall. We watch each other's children grow up. and most of the time, we've never even met, but friendships are made, relationships are built ... ones that I truly cherish and know will last a lifetime.

we provide each other our arms of acceptance that, "I know exactly what you're going through and I will always be here for you," that not everyone looking into our world truly understands.

This community is beyond amazing.

I received a message that touched my heart on Facebook a little while back. This amazing person is from Italy and had been following Aiden's journey. As I read her message to my husband and mother-in-law, I was moved to tears. Here's a little piece of it.

"... my nephew was diagnosed only last march (he was 18 months old ) with profound hearing loss in both ears. He was born deaf like Aiden. Six months of hearing aids followed with practically no results and then last October he received Cochlear implant in his right ears . He has been hearing for 5 months by now and we have made good progress: he turns when we call his name and he's starting to say something ( vowels sounds, “pa” “ma”) He can hear now and that really is amazing and a miracle but sometimes it is so hard. ... I am so worried about him ... I would like to be able to find listening activities that may interest him and help him to speak more, I would like to be able to do much more to help him and his parents in this journey toward sounds and some days progress seems so slow ... then I read Aiden's blog and you can't imagine how this help, how encouraging it is to read about your journey and Aiden progress and success and well I really would like to thank you so much for sharing all this ....

I posted Aiden's video on my facebook homepage since it is so encouraging and I wanted my brother and sister in law ,and everyone else who don't know anything about being deaf, to see it and what amazing miracles can happen with a lot of hard work. You have a great family, Aiden is a lovely fantastic boy and you are a great mom and I really want to say thank you thank you thank you :)"

My eyes leak whenever I read this. One, it takes me right back to the beginning days, but even more so, this is a woman who has so much love for her nephew and has taken the time to research, to understand, to LEARN, to reach out in this vast support community. She is his aunt (his AUNT!) who has become one of this little boy's biggest advocates! I don't know this family, but I know this little boy is one lucky child to have an aunt who loves him so much and who will stop at nothing to help him hear and speak. HOW AMAZING IS THAT?!? and that's why my eyes leak.

and that's also why I love being a part of this community and being able to give back through our story.

Here's another message I just received this morning on Aiden's You Tube page from the video I made for Aiden's first hearing birthday, From Silence to Sound.

"This is absolutely adorable! I have hearing aids and have had them since kindergarten, and I've always felt different from everyone else. Until, of course I got to know my aunt who is also hearing impaired. But, even still, that feeling still remains, just at a slighter level. This little boy has given me an inspiration though. He has showed me that it's okay to be different, because that's what make you, you. Thank you so much for this video! :)"

and this is why I write, why I share Aiden's story through words and video. Not only to be a part of an AMAZING support group and for my own therapeutic benefits, but even more to see how his story is giving back, ENCOURAGING, providing HOPE and INSPIRATION, just as so many others continue to encourage and inspire and provide hope and guidance to me.

and for all of you, I am thankful.

Regional Infant Hearing Program

and checkout who's on the cover of our RIHP's newest brochure!

This was taken in the Spring at one of the hearing loss toddler playgroups we attend through the program. There's actually a tear in his eye as this is when he was Mr. Cling, but now he can't get in the room fast enough!

The Ohio Department of Health funds several Regional Infant Hearing Programs (RIHP) throughout the state of Ohio. These services provide families of babies and toddlers identified with a permanent hearing loss free of charge and are in addition to any services we receive through our county. The Columbus program provides services to families in nine surrounding counties. It is through this program which we are offered a parent advisor (our wonderful Ms. Natalie whom we see once a month for therapy ... only once a month because of the areas growing clientele of parents with babies/toddlers identified with hearing loss) and attend a bi-weekly parent support/toddler group. They also offer audiological support from a licensed Educational Audiologist and are an excellent provider of resources and information.

We are very lucky to live in a state/county which provides such wonderful services for Aiden, not just as a toddler, but also once he turns three and begins preschool.

Busy Bees

Since we've moved I have been busy making the new house our home, but just as important, getting my kids settled and acclimated to their new life here in Ohio. Both of Aiden's older siblings are so well adjusted and I couldn't be prouder of them. Of course, neither of them wanted to leave their friends in Maryland, but once we hit the road, they didn't say much else about it. Since we've been here, there's been nothing but happy faces (well, for the most part anyway)! They both love their new school and came home the first day excited to go back. I too, was very impressed with the schools, as they're much smaller and I could tell just walking in them that my child wasn't just a number.

Ryan is easy. Get him signed up for school, talk with the counselor on how he needs to be placed in advanced classes, but watched closely because he has "bright but lazy" syndrome, get him signed up for spring baseball, take him out to explore the woods, set up his XBox 360 and stereo and he's ready to go.

Kailyn too, lead her to friends to play with and she's happy as can be. Her school called me immediately to set up a meeting to discuss her 504 plan. They had the school psychologist there along with everyone else and we discussed my concerns about her having a possible auditory processing disorder (which, like hearing loss, can mimic ADD/ADHD). They tested her that next week and we're just waiting on results. I also told them about Aiden having LVAS and how Kailyn tested at 40db at one point (which ended up being due to fluid) so the speech pathologist set up for her hearing to be tested every couple of months. They devised their own success plan for her, on top of the IEP, and she's been doing wonderfully! I'm in the process now of finding her a good gymnastics class and Girl Scouts troop.

Then there's Aiden. I'm shouting out a HUGE THANK YOU to Drew's mom and Allison's mom for leading me in the right direction way before we even moved here. They led me to the "good" counties and steered me clear of the ones we wouldn't want to be in. They sent me audiologist names, preschools to check out, the low down on therapists etc. I couldn't have asked for any better "relocation specialists"! And boy were they right. This county provides an Early Intervention (EI) program like I've never seen before. Until Aiden reaches the age of three, he will be provided services through Ohio's Help Me Grow program, our county's EI program, and the Columbus Hearing Impaired Program (C.H.I.P.). There's so much to get a hold of, and I don't completely understand it all yet, but here's the low down of what I get so far.

The EI program through the county has MANY opportunities for us to make good use of our tax dollars. Aiden has been qualified to receive Occupational Therapy, Physical Therapy, and of course, speech therapy. The wonderful thing about this program is they contract out with companies or individuals who provide these therapies within the communities. This means I get to choose who Aiden sees and if for some reason I don't have warm and fuzzies about it, I can choose someplace else. There's also the option of having someone come into my home OR going to an actual location. I love this because I'd rather bring Aiden to sessions where he can "play" on all the fun equipment, which gets him engaged at such a higher level. This is outside of any private services I choose to pay for through our insurance.

In addition to our therapies, the program also provides us with an additional budget dollars to use towards "other" activities that would benefit Aiden. For example, I could use these funds for a swimming or gymnastics class, music therapy, additional therapy sessions, playgroups, etc. I believe I also get funding to help pay for CI equipment, hearing loss conferences etc. I'm in awe. Every county should have this. We are checking out a music therapy class next week with We Joy Sing.

The CHIP program is a part of the Columbus Public School District, but provides services for over 35 districts, servicing over 200 hard of hearing or deaf children ages 0 to 21. Through this program we are provided a teacher of the deaf (TOD). We met with our new TOD for the first time this week and I was just amazed. She had Aiden laughing and immersed in language within the first five minutes. We spent a whole two hours with her getting to know each other and learning each other's expectations. We only get to see her once a month, but she will always send home a couple pages of homework and activities to go along with it! You know I absolutely LOVE THIS! This program also hosts a toddler play group once a week where the parent(s) meet in one room and the toddlers play and do activities in another for a whole hour and a half.

Being an auditory verbal family, Aiden's daddy and I knew from the get go we wanted a strong auditory verbal therapist (AVT). I called our wonderful AVT from Texas, Miss Becky, to help us out with referrals. She got us in touch with a well respected AV therapist (and former audiologist) from the Cleveland Clinic whom we are VERY excited to see. He too had Aiden laughing within minutes of stepping foot in the door. Even though it's about a two hour drive, I know it will be well worth it and more than anything, get us back on track. We will see him two times a month.

After leaving The River School, my biggest worry has been Aiden not having the social interactions with hearing and deaf peers. His hearing peers at the school were huge language models and he was starting to thrive in a classroom environment - away from mom's side. He was over the whole separation anxiety and even started saying his CI buddy Ben's name. I believe kids learn best from their peers (oh, and the pretty much private SLP he had in the class was a huge bonus too) and leaving this school was the one thing I hated leaving behind. But I'm finding out with the resources here, we'll be able to fill this void without breaking our budget.

I have also scheduled our first audiology appointment AND our first appointment to meet the CI surgeon/ENT in this area. The audiologist we're going to see has come very highly recommended from Drew's mom, our audiologist at Hopkins, and my amazing SIL, who is a TOD here in Ohio.

So our schedule is filling up fast. He'll have OT or PT one time a week (rotating between the two), we'll have a toddler play group once a week, music therapy once a week, and the funny thing is, we'll only have outside auditory therapy three times a month ... well, that doesn't include all the "play" time with mom at home everyday!

Shout Out to a Dear Friend

There's not a day that goes by that I don't think of my father. Not a day. They're mostly good days, when I smile about fond memories, but some of them are just down right yucky and all I want to do is sit in a corner and cry type of days. This morning I was doing the laundry, Aiden was down for a nap, and for some odd reason I just started thinking about how almost two years ago I had to make one of the hardest decisions of my lifetime ... to take my dad from his home and admit him into assisted living. It was the last thing I ever wanted to do, but he was to the point where I had no choice. We tried to have him live with us many times, we tried the full time nurse at his house, we tried and tried and tried to do what was needed to keep him living a normal of a life as possible. But the time had come ... and I hated every.single.minute of it and still do to this day.

That was October 10th, 2007. By January he had spent time in two different hospitals and three different nursing homes before we found the right one for him ... but by then it was too late. He had given up and he was dwindling away in front of my eyes. I felt so alone ... and SO guilty. How could I have let this happen to him?!? I spent one last night alone with my father, before my mother and brothers arrived from out of state. I was 8 months pregnant, and just held his hand all night long, praying and crying. praying and crying. He passed away less than 48 hours later.

That's all I could think about this morning .... and the guilt set in again. But within folding a few towels, my thoughts veered to why God gave me Aiden. It was right then that I realized that I was blessed with this deaf little boy to focus on the good and the positives and the rewards life has to offer. He gave me my sweet little boy to help me let go of that guilt, to realize life is too short to constantly wonder "what if", and most importantly, to help me let go of what my father endured and to focus on this miraculous journey my own child was about to endure. He prepared me for Aiden through my father, and with heartache comes great joy ... and Aiden is his grandpa through and through.

Right after, literally within seconds, of my crying episode and heart enlightening episode in the laundry room, I went to check my email and found this from a dear friend of mine with whom I taught back in Texas. It had JUST BEEN SENT.

"Hi Tammy,
I am so thrilled to hear that Aiden was accepted into the school of your choice with financial aid no less. Every time I check your blog and read of something so extraordinary, I can only thank God for giving you a strong character and the determination and tenacity to do everything you can for your little man. Bless your heart. I don't know why God allowed Aiden to be deaf, but I am so thankful He chose you to be his mom. You are a blessing girlfriend. I am so proud of you."

I was in tears. Sharon has always been there for me with a hug, with a positive message, with hope and belief. She is one of a few people who truly helped me stop questioning God, but to believe in Him. She always had a hug, a prayer, words of encouragement, or even agreeing with me that yes, sometimes life sucks. She has always followed Aiden's blog and has been one of my biggest supporters. She is always in the right place at the right time ... even if I'm in Maryland and she in Texas!

I emailed her back immediately explaining my episode and how her message, once again, was sent just at the right time. This is part of an email I received back:

"Tammy, I always feel so blessed when I listen to the prompting of the Holy Spirit to do something and today it was writing to you. You are a blessing to me and so many others, and I hope you never forget that. And you were certainly a blessing to your dad - no one doubts that or just how much you loved him. But with all of that, you could not change his destiny. I know the pain I had in losing my parents most especially my mom."

So here's a shout out to you my dear friend ... THANK YOU from the bottom of my heart. Your words mean so much to me and I couldn't have received a better message at a better time! I am truly blessed to have you in my life!

and cheers to my dad ... an amazing son, husband, father and grandfather. We miss you so much and will never ever forget you! You'd laugh out loud at the fact that Aiden is just as stubborn as you and has that smile and blue eyes of yours that wins everyone over each and every time!

Wisconsin Part One - The Grandparents

Every year I take the kids to grandma's house in Wisconsin to spend a couple weeks. We always have so much fun! My mom and I have a very close relationship and it is through her that I have acquired my strength and courage. We have been through thick and thin together and without her, I don't know if I'd be the person I am today.

My mom is not only a wonderful mother, but THE ultimate grandma ... in fact, after returning from our trip, I always say, "Gotta beat the grandma out of the kids and get them back in line." They do no wrong in her book! They are the apples of her eye.

In my journey as a mom, and especially with Aiden's deafness, family has been such an important piece of the whole puzzle. Without the support I've received from so much of my family, I don't think I'd be where I am today ... especially from my mom.

I'll never forget calling my mom when I found out Aiden was deaf. We had gone through so much pain already that year with my dad dying and I didn't want her to deal with anymore. I wanted to sound strong. I wanted to protect her from the wounds of my heart. I told her I was okay. But I wasn't. I called her back the next day and cried my eyes out, explaining I wasn't okay. I was a mess and felt lost. And she listened and comforted me in a way that only a mother can. She cried with me. She felt my pain. And to this day she continues to listen and comfort and support and love and share in my bad days, but even more so, Aiden's milestones, the laughter, and the tears of joy.

Aiden's grandma researches and reads and does her best to learn all she can about his world and his therapy. She puts on his CIs and tries her best to troubleshoot and understand everything about them. She constantly narrates to him, gets on the floor and plays with him, takes him for listening walks, and uses an auditory verbal approach without even realizing it. She gets it. It's just amazing how she just gets it.

And the best part about it all ... is that she has this type of relationship with each of my children ... each in their own special way. And each of my children love her to the end of the world and back.

I love you mom! Thanks for being who you are ... not only to me, but even more so to your grandbabies! You'll never cease to amaze me.

Then there are my grandparents. I'd like to say my mom's the best grandma in the world, but I can't compare her to her own mother, my grandma, whom I believe is the icing on the cake (Kailyn's middle name is after my grandma ... Laurel). Her and my grandpa have always been a top priority in my world. I have a very close, special relationship with my grandparents and feel so blessed that my children get to know the two people who have always been so perfect in my eyes. My grandpa is the only grandpa my kids have. They know this and they cherish every part of it.

Ryan and his great-grandpa talking WWII.

Four generations

Both of my grandparents are still going strong and looking great! Every morning Aiden and I would head over for breakfast for interesting conversations and to laugh as my grandparents "talked" back and forth at each other. Loved every minute of it. These are times I will always cherish.

I remember last year tears rolled down as I talked to my grandparents about Aiden being deaf. My grandpa would shake his head and say in a worried voice, "He's going to be okay. He's going to be okay," and continue to tell me about his deaf aunt who read lips and communicated just fine.

When they saw Aiden this year, they were amazed at how far he's come. They asked questions about his "equipment" and were amazed by the technology. They were surprised at how Aiden turned to their voices and how rambunctious he was. Aiden's great grandma said, "I've never seen a baby as smart as he is. Look at him just figure things out!" Aiden made them laugh. He let them see the miracle of hearing through CIs. This year, my grandpa wasn't worried about him and instead said proudly and with a smile, "He's going to go far. He's one helluva kid."

And that he is grandpa. Thanks to you both for being such an important part of our lives! You'll never know just how much you mean to me! I love you both so much and could never ask for better grandparents!

Thank You!

We're at a new point in our journey. Aiden now has both CIs activated and he's on the path to hearing. Last week was a rough one for me. Aiden was sick, his second ear was activated, my other kids had activities ... it was just nonstop and I was at my wits end. In my previous post, I wrote all about it, and as always, received such encouraging responses! So I wanted to take the time to thank you all, because it does take a village!

We have been so blessed with all the love and support we have received (and continue to receive) throughout Aiden's journey! Everyday I have some sort of email, message on Aiden's blog, message on Facebook, card in the mail, phone call, text with words of encouragement, advice, or just checking on Aiden and our family, etc ... the support we have is absolutely AMAZING!

Family and friends from all over keep up with Aiden's journey and are always reaching out with open arms. They listen to us share "another Aiden milestone" or bitch and moan about running from appointment to appointment; they offer words of encouragement; they say prayers for Aiden and our family. They read Aiden's blog and other deaf/hoh blogs to try and understand it all, they ask questions, they research, and above all, they are always there to LISTEN. Aiden's daddy and I have a wonderful support group through both of our families and all of our friends. We are very fortunate to have each and everyone of them in our lives. SO THANK YOU! We love you all very much and don't know if we'd still be sane today without all your love and support!

Then I have my circle of mommies who have a deaf/hoh child(ren). These moms just get it. Where would I be without them? When I found out that Aiden was deaf, the first thing I did was research all these professional sites that were very textbook - great facts, but not consoling. I felt so alone.

Then a good friend of mine sent me a link to Landon's blog and his mom had links to other mommies whose child was deaf or hoh, like Drew, and Christian, and Toes and Gage and Brook. You mean all these kids are deaf/hoh? All these kids have hearing aids or cochlear implants? I found what I was looking for! I immediately left a message on each of these blogs and heard back from each one of them ...


... and it was here that I started to find some peace about my son's deafness. From mom's who knew exactly how I was feeling ... they knew the words I needed to here. They were exactly where I was at one point. They gave me more than facts, they gave me hope. That was almost one year ago and this circle of mommies has done nothing but grow. As I walked along our path, I found moms to walk hand in hand with, such as Lucas' mom, and Ben's mom, and Danny's mom, and little m's mom and many more. Now I'm meeting mom's who are just starting their journeys and I just hope I can provide them as much encouragement as all these mommies (and so many more) have provided me!

In my desperation last week I heard from many of them saying, "I get it" ... "Yes, sometimes it does just suck, BUT" ... "IT'S OKAY, we all have these days". They provided me with words of encouragement, wisdom, success stories, advice. SO THANK YOU! I love being a part of such a strong community as I walk this journey with my son!

Then, there are also people I have "met" who are deaf and CI users. I love hearing from them because they open up windows into Aiden's world. A world I try to understand each and every day.


I received one response from Douglas, who is the oldest of seven kids, has bilateral CIs, and has a one year old little brother who has one CI and is on the way to getting the second. He gave me some suggestions on wearing the processors. He also said, "Diezel (his little brother) is starting to talk and he likes to listen to music with me." Love this! Two deaf brothers, listening to music together! I just "met" Douglas' mom not too long ago, and she writes this blog about her sons' journeys.


I also received a response from Rachel, who has bilateral CIs, has travelled the world, developed deafvillage.com, blogs her stories on this website (along with the infamous Miss Elizabeth Boschini) and has provided me SO much hope through her life stories that Aiden will have unlimited possibilities!

Rachel commented to me, "...I cannot imagine where my life would be if I was born with normal hearing. Being deaf and having cochlear implants opened the doors to so many unique opportunities .... I also have always felt that being born deaf and having cochlear implants made me a unique person."

SO THANK YOU RACHEL & DOUGLAS (and Danielle, and Michelle, and Laurie and all the other adult CI bloggers who help me understand Aiden's world!)

What Great Support!

I have put myself and our story out there. I wasn't ready to talk about this with people I didn't know, but knew I needed to hear their stories, their successes. So I started leaving comments on other blog sites of families with deaf or hard of hearing (hoh) children. I wasn't sure of what the response would be. Let me tell you, it has been overwhelming! It feels INCREDIBLE knowing that there is this group of people out there who don't even know you, yet do know you, and could probably tell your story, and they care! I've realized this is a community of people who BELIEVE, who have HOPE, who have FAITH, who CARE not only about what's going on in their life but about other's going through the same thing as well! It feels wonderful knowing there's always someone steps ahead providing faith through their successes, someone walking hand in hand with me, and someone just entering the deaf/hoh world which I can only hope to be as inspirational to as others have been to me!

Throughout my dad's dementia battle, I had great support from friends and family, but didn't have the chance to find that "community" of families who had been there, done that. I still wanted to tell my story and share what I learned to help families avoid the same pitfalls and hell I did. I feel I never got to end my dad's fight before starting a new one, Aiden's deafness; they are so different, yet similar. My dad stopped listening and speaking ... the demon won, and we knew in the end, that it would; we didn't have that choice. With Aiden - HE WILL LISTEN AND SPEAK and the only way we won't win is if we choose not to! We already see "grandpa Bob" in Aiden, he's a stubborn little thing and he makes sure he's always heard, just like his grandpa!!!!

On another note .... a precious little boy (and cochlear implant recipient), Christian, gets activated (once the implant surgery is done, it takes a few months before they actually "turn on" the new ears) in a few days! How exciting! I can't imagine being at this point! I picture it as feeling like the night before your wedding day, the moment before getting induced to have your baby, or for military wives - the night before your husband gets home from an unsponsored tour ... it's the day your baby will hear! What is more exciting than that!!!! We still have a while to go before that big day, but in the meantime, we are here to celebrate other "hearing birthdays" with this great community of friends along with providing HOPE, BELIEF, and FAITH to all the families who enter our world too!