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!)
6 comments:
Isn't it incredible? Isn't it such a gift? I would have been completely lost had I not found Drew's parents' blog and from there found so many people walking this same path. I just wanted to say thank YOU too - for walking right along with us, and sharing your journey.
You are an amazing mommy and Aiden is so blessed to have you.
We have all been where you are and life does stink at times, but oh the wonderful things that are in store for Aiden.
It is great to know that we don't walk this journey alone, that there are those out there that have been where you are and those that are coming behind that can gain from you wisdom.
I am so happy that aiden has both CI'S activated. I just wanted to say that your an amazing mother.. and yeah OFC your going to have bad days.. but Im sure all the good days will be from now on. I canot wait to hear more about how hes doing.
Best of Luck... and One more thing when u say bad days I have them everyday since i been sick for 2 yrs.. but I learned not to give up hope because im a strong person. So I hope this can help in anyway.
Smile-Hugs,
Danielle
I haven't checked in for a while. I'm sorry last week was so rough. I have those days just dealing with the hearing aids. I wish I didn't have to hear feedback all day, I wish Lily didn't have to wear pilot caps all the time (I want to see her hair!), I wish she could hear me talking to her when she wakes up first thing in the morning and singing to her before she goes to sleep at night.
I want to thank YOU for the hope you gave me when Lily was first diagnosed. You were the first HOH/CI mommy I "met." Your blog and your emails gave me a peace about Lily's future. I know we still have a long road ahead of us, but I'm thankful that we don't have to do it alone.
Darn it... now you've made me cry at work. I hate that.
;-)
Awww, thank you for your comments!
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