Lucky Girl.

I'm a lucky girl.

This weekend included a quick road trip on Saturday up to Wilmington, DE with one of my oldest and dearest friends to visit another oldest and dearest friend. We left around 3pm, and by 6pm we were sitting in a swanky downtown restaurant, all dolled up, drinking Malbec and getting excited to go see one of our favorite Reality Stars. It was a FUN evening. I think my favorite part of the trip was laying on the couch with them this morning watching re-runs of the show we all affectionately call Bev-Niner. What a wonderful way to start the week: lounging comfy clothes with two of my besties, reminiscing about early 90s fashion.

By 3pm on Sunday, I'm back home, with an itchy eye. By 5pm, I've been to Urgent Care and back with a prescription to combat possible pink eye.  Not so lucky there, but whatever. I still escaped for a quick but much needed break with beautiful friends.

Sanity Break

Yesterday was all about being around the people who remind me who I am and what is TRULY important. 

After Christian got back from the circus with his Gram and Papa (which he said was "REALLY AWESOME"), we headed to a late afternoon playdate with my friend Michelle and her two boys. Michelle is an amazing woman, who just happens to have a little boy with a Cochlear Implant as well. It's nice to be able to sit and have a glass of Proseco while our boys play outside and be able to talk about everything. We both know where other is coming from. The coolest thing about my friendship with Michelle is that while she's my comrad in all things hearing loss, she also reminds me to focus on myself and our family as whole. She's a reality check. She cheers me on, but also reminds me to not lose who I am during the craziness and uncertainty of Christian's hearing loss and having a 14 month old running around.

Later that evening I went to dinner with my dear friends Todd and Joe. Todd and I met almost 15 years ago as Freshmen in college (wow, I'm starting to feel old). Todd is incredibly smart, funny, talented, and he also has a way to look at things from a completely different perspective. Joe is the perfect balance for him, and has a smile that lights up the room. I always laugh when I'm with the two of them. They keep me real. They remind me to be "Christina" not JUST "Christian and Lily's Mom", while also managing to care very deeply about my role as a Mother and Wife.

I needed yesterday as a sanity break, and am beyond thankful for my wonderful friends who support me, but also keep me REAL.

New Beginnings

Yesterday Christian had his first appointment since we transitioned out of the Infants and Toddlers program with his new teacher through our county, Mrs. K. They completely hit it off, and he was his usual silly, sweet and VERY chatty self. He gave Mrs. K. a very good picture of who he is, and he was totally comfortable with her. I knew he would be, but I couldn't help breathe a sigh of relief once she left. I have been so full of anxiety with this whole transition. As most Moms of children with Cochlear Implants will attest, the relationship your child has with their teacher/therapist is essential to the success of the child. We have been BEYOND lucky to have absolutely wonderful teachers and programs at our fingertips to help Christian. I'm really looking forward to working with Mrs. K and having her on our team.

A Teacher Affects Eternity

Miss M. has been our early intervention provider since Christian was just a little baby, and we had our last appointment with her on Friday just before the snow arrived. It was so hard saying good-bye to Miss M. She's been a part of our family for the past 3 years, and is responsible for much of Christian's success. For 3 years, we'd sit at our kitchen table, working on listening and speaking. She saw us through our first hearing aid fitting, our Cochlear Implant candidacy, surgery, and rehabilitation. She celebrated Christian's first signs, she cheered for his first words, and laughed at all his stories. She gave us hope when we had none, advocated for us when no one else would, and stood by every decision we have made as a family.

Miss M. not only was Christian's teacher, she was mine. She saw me through some of the most difficult moments I have had in my life. She became a true and trusted friend, someone I could go to not only for advice on how to work on Christian's hearing loss, but just parenting in general. There is that saying that a teacher affects eternity, and it couldn't be more true for Miss M. She has forever changed our lives.

Nucleus 5 Activation

Just wanted to post this link to a news story that not only features a sweet baby girl with bilateral Nucleus 5 implants, but also Christian's 1st SLP, Mrs. Spies. She is a very special teacher, and we are so proud of her!

Another Fantastic Resource

I contacted The Children's Legal Advocacy Program that AG Bell sponsors earlier this week with some questions and concerns regarding the level and type of service that Christian is receiving (and proposed to receive once he turns 3). Within 24 hours, I had an email back from an attorney that supports AG Bell. The next day, I spoke with an attorney who specializes in Special Education law, with a concentration in Oral-Deaf education. For over an hour, we discussed my family's concerns, and I left the phone call with some really useful tools and insight, as well as reassurance that our family would have the support and expertise of the attorney and the program. While I wish I didn't have to contact them in the first place, I am thankful for AG Bell sponsoring this program.

Thankful

I always have said how important my support system of friends has been throughout this whole journey with Christian. With all of this drama with our IEP process and preschool placement next year I certainly have been relying on the troops to lend an ear and advice. I love being able to just hit speed dial and call a girlfriend when I need to just get something off my chest. They all have their own "stuff" going on, whether it's with work, family, their own kids, or even school. None of these girlfriends are going through what I happen to be going through, yet they all have stuck by me and continue to help me through. Some don't even have kids. They are consistent, they laugh with me, they cry with me, and they love both of my kids. I love how we can catch up quickly on the phone while I'm on the way to pick-up from school and they are taking a break at the office. I love how I get random emails checking in on how a certain meeting went, when I know they are traveling for 2 weeks straight. They pop by on their way home from a walk to just say hi, or shoot me an Instant Message to get my mind off of things to tell me about what Jon and Kate are doing. They pitch in when I'm in a jam, even though they have the craziest schedules ever. They let me come over and just plop on their couch with a glass of wine so I can actually have some adult time. They are my sanity, and I am so thankful for them.

Last night however, I had dinner and drinks with a girlfriend who knows EXACTLY what I'm going through. We met what seems like eons ago, and her son also has a hearing loss. They live in our county, sent their son to Christian's current school, and their little guy was implanted this past summer. She knows exactly what type of stress we're feeling, and knows why I'm so worried. It is so nice to not feel so alone in this journey when you know there are other Moms laying awake at night worrying about lost batteries and CI programming. It also helps that we both love our Meritage, we both married Irish-Catholic hunks, and we both are passionate Mediterranean women. I am so thankful for our friendship, and I am so glad that our boys will have each other as they grow.

Keeping up with the Joneses

A recent post on one of my favorite resources and list-serves really touched my heart. A Mom posted her frustrations on just how hard the holidays and keeping up with everything with her little boy this time of the year is, and it really hit home with our family.

My family is fortunate enough to live in a really beautiful neighborhood in an affluent area. In our area, we are so lucky to have access to many different activities and classes for the toddler-preschool set. There was a time, not too long ago, that I thought my kid was the only kid not going to a tri-weekly music class, or that we were the only family without a membership to a toddler gym. The truth of the matter is that with typically hearing and developing kids, your choices and options are endless. However, if you have a kid who maybe isn't typically developing (or hearing in our case), you tend to run into road blocks. For us, access has never been a roadblock, thanks to programs in our area that are specifically for kids with hearing loss. The road block that I usually encountered was myself, and the feeling that I had to keep up with the other families in our neighborhood.

It was so hard, especially last year prior to Christian's implant, hearing all these parents talking about taking their kids to holiday sing-alongs and Christmas puppet shows. I WANTED TO DO THAT! My little guy couldn't hear my voice, let alone the sound of bells jingling. And I beat myself up over it. I felt bad for myself, and for him. I remember driving to the mall one night sobbing listening to Little Drummer Boy thinking how Christian would never hear that song. It made the holidays really, really hard.

I got out of that funk last year by just saying "screw it", and we did what we wanted to do as family. We did the holiday activities that we knew Christian would love, like going to see beautiful light shows at night, and going to see a Santa that signed.

Fast forward to this year, and it's a totally different story. Christian's implant has made it incredibly easier to access many of the "typical" activities, but there's something else... I have this amazing group of friends here in the neighborhood that have taught me to forget the Joneses. They embrace my kid and my family for who we are, and are always sensitive to our different needs. They never ever make me feel like an outsider, despite our "different" situation.

I think it's so important as a parent to a kid with hearing loss to honestly just forget about what all the "other" parents and families do, and just do what is good for your kid and family. As much as we want to give our children a "typical" childhood and experience, we need to keep our sanity. I decided to let Christian lead the way. And I'm thankful for my girlfriends here in the neighborhood who embrace him, and our atypical situation.



The Margarita Mommas who keep me sane...even when I'm fat and preggers.

Thankful for Family Support

I'll write a complete Thanksgiving recap, including some details on Christian's language explosion that has occurred over the past week, a bit later. For now, I wanted to share my thoughts on family support, and how essential I believe it is to the success of not just the child with a Cochlear Implant, but also his parents.

I've always loved how my parents have completely jumped in the role of "Super Grandparents". Both my Mom and Dad absolutely adore him. They spoil him rotten with love (and lots of toys), and make every effort to make sure he is comfy in their house, and is always happy. I love watching how my Dad will roll around on the floor with my little guy. He likes to take him to breakfast, and they have their own little games. Christian absolutely adores his Papa too...I think he thinks that my Dad is a toy! And when it comes to Nana, he knows that she's the one who will kiss him all over and make sure he has more than enough treats. She always makes sure that he is warm and cozy, makes his favorite foods, and literally would walk on water for my little man. It is so very hard living so far away from them.

What I think is so amazing is how supportive both my Mom and Dad have been from day one with everything that we have had to deal with. They have let Chuck and I lead the way as far as what we want for our son, praising us, and cheering us along as we do whatever we have to do. They've supported our therapy decisions. Not once have they ever questioned our methods or techniques. They just always ask "How can we help?". They ask us questions, but somehow, always let us be the experts, trusting our judgement. When Chuck and I were at our low points, they would just let us know that they would do whatever we needed them to do, and they have. They've become very interested in deaf culture, researching and trying to understand how our family fits in, and have even taken ASL classes.

When I'm having a hard day breaking through to Christian, my Dad always is able to remind me just how great of a kid Christian is (and a Mom I am). And when I call my Mom and just sigh, she somehow knows exactly what I am trying to say and just says "I know...". They have found a really interesting balance between treating my child just like a regular kid, while also paying attention to the little things that are particular to his situation. It's these little things (like remembering to turn down the music/tv, or signing to him while he takes a bath) that make our lives as his parents easier.

I know many parents of children with hearing loss read our blog, and I know that some grandparents and other family members of children with hearing loss sometimes log-on. Whatever your roll in your family, I urge you to support the choices, methods, and therapy decisions that the parents make. Remember to cheer along not just the child with the hearing loss, but also his parents.

l.o.v.e. will keep us together

I married the strong, silent type.

It's no joke that this certainly hasn't been the easiest year of marriage. We kicked off our wedding anniversary last year with the official diagnosis of Christian's hearing loss. Since that moment last October, our marriage transformed. We went from having not a care in the world, to having the weight of the world on our shoulders. Our young marriage has experienced things that most marriages never see. We laughed. We cried. I yelled. And I screamed. And took out so many emotions on him. People told us that "this is God's way of bringing us closer as a family". I laughed in their faces, and invited them over to my house while we were going over medical bills and therapy decisions. Despite it all, the guy I married, has stood his ground. He's supported our family in no way any other could. Always the logical one, he kept us in line while my emotions kept us occupied.

When we were dating, I imagined what it would be like to be married to him. I knew he would take care of me. I knew he would be a great father. I knew that he would provide. What I didn't know was that when our marriage would be tested, like the way it has been this past year, he would do everything he could to make sure it didn't break.

On my 3rd Wedding Anniversary, I'm grateful for having married the strong, silent type. I love you, Chuck.

One of those moments

Today after drop-off, I ran into two Moms that both have deaf kids that attend our school. We grabbed some coffee (Chai Tea Latte for me) and sat outside of a cafe across the street from the school and just vented to each other. All 3 of us have boys, and while all 3 have a hearing loss, they are so very different. We chatted about troubles and triumphs with therapy, equipment mishaps (2 of our kids have CIs, the other wears hearing aids), and just shared what has been on our minds.

I feel so fortunate to have such a great support network of Moms who know how it is to walk in my shoes. I really think that unless you actually have had a doctor look you in the eye and say "Your child has a hearing loss", you really have NO idea what goes on in our hearts or minds. It's like we have this unspoken understanding. And no matter the level of hearing loss, from profoundly deaf to mildly hearing impaired, we get eachother.

I don't want to discount how much I value my friends who have typically hearing children, or even my friends that don't have children. Each group of friends is so important, and I believe helps support me and my family in a very specific way. I just feel so lucky to have support from Moms who know EXACTLY how hard everyday is, even when we are having a good day.

TenPenh for the 3-0

At the end of this month, I turn the big 3-0. I've been a bit apprehensive about this birthday. Don't get me wrong, I'm excited about my birthday. But that number....it isn't really sitting well with me. I remember sitting in a high school religion class with one of my classmates playing the "Where Will We Be" game. By 30, I wanted to be married, have kids, and be an attorney. I think I did pretty well, with two out of the three wishes granted.

My closest girlfriends (well, one was there in spirit, she lives in Delaware) took me out for an AMAZING dinner last night at TenPenh for my birthday celebration, and they completely spoiled me. They managed to get the menu personalized for me, had the Chef sign it, and gifted me with a STUNNING piece of jewelry. I also am going to one of my favorite band's shows in a week. It's so amazing to think that I've known 3 of the 4 of my besties since I was 17. We've watched eachother go through so many different transitions in our life. They've always been there for me, and have rallied together and provided me with the most amazing support and strength during this journey with Christian. I've always said that I wouldn't have been able to get through it all without them.

The girls and I at dinner

The Personalized Menu


My Bling!

I hate good-byes

Right after Christian was born, I made the decision to not return to my full-time job. While I loved my work and my co-workers, I couldn't bear to be away from my baby. Several months later, when we learned the depth and the severity of Christian's hearing loss, I knew I made the right decision. I had to be at home with my son. I was able to find several clients and start working from home 20 hours a week. I just needed to find someone to help me out at home while I worked a couple of hours in my office.

The moment Chuck and I met Arina, we knew we found our girl. A recent Notre Dame graduate, with a strong Catholic faith and a dynamic personality. She was getting her Masters, and absolutely loved children. We hired her immediately.

Arina has been with us for every up and down with our journey with Christian. She's learned sign language, she can switch out hearing aid and CI batteries, trouble shoot error messages, and even practice Ling sounds with him. She sings him songs, plays fun games with him, and has taught him so much. When you have a kid with special needs, you don't need any more things in your life to stress out about. The days that Arina is here to help, Christian is always so happy. He thrives when she is around.

As much as we would've loved to have her forever, after Arina graduated this May, we knew she would be on a search for the perfect full-time job. She called us last week and told us that she found one. So this week is our last week with her. We are so happy for her, but also sad that we won't be seeing her as frequently. She has become such an important part of our family. She has always been so committed to Christian's success, and has done everything that she could do to become a part of his world. When Arina is here, I know I have nothing to worry about. We're so proud of her accomplishments, and we love her very much.

THE DIVINE MISS M

I just want to brag for a moment, as I know that most people aren't as fortunate as we are to have such a loving and committed EI teacher. Our teacher, Miss M. has done the leg work and has secured us 2x a week visits!

We completed the paperwork today to finalize the new services. She believes that Christian is doing very well with his listening skills and feels that this is a critical time for his listening, learning, and language acquisition. Christian responds so well to her, and I feel we get some great work done together. I am so glad that we are able to have our services increased to keep him on the road to success.

All You Need is Love...Our First Guest Post

I can't reiterate enough just how important a good support system is for families of D/HOH children. I know for my family, especially during the early days of Christian's diagnosis, that our strong, loyal, and close-knit group of family and friends in our support system is what got us through. They held our hands during the uncertainty, prayed for us during the myriad of tests, and listened to us cry over and over again.

Just as Chuck and I are working to understand Christian's hearing loss, our friends and family are as well. They have amazed us with their willingness to learn how to effectively communicate with our son.

I'm proud to include a guest post from one of my closest and dearest friends. She has been on the front-lines of our support team, and I asked her to write about her experience this past year.



Tina was my first friend to have a baby so needless to say, for me Christian was a highly anticipated, very important, special little guy. Christian was only a few months old when I took the summer off from work to study. I was so fortunate that summer as I got to spend a great deal of time with one of my closest friends and sweet Christian. At that time, Christian's diagnosis was unclear and Tina and Chuck were struggling with their own feelings and how they were going to handle Christian's different abilities. As a part of the inner-circle I didn't really know what to do other than to be there for my friends and their sweet boy. Once it was clear that Christian is deaf, Tina and Chuck faced that challenge head-on. I was so amazed and inspired by the strength and courage that my former drinking buddies had as wonderful parents!

As I had never really known anyone who was deaf, I was initially afraid how I would handle this. I mean, Tina had developed this whole support team through her blogging. These are people who actually get what she's talking about. Maybe my words of advice won't matter to her anymore. Would I say something that was offensive and ignorant? Would I use the wrong sign? Would I even learn how to sign?

But then I realized, here's the thing... Christian doesn't know he's different. He only knows his life as it is and as it has been. He's not going to be disappointed if I use the wrong sign! And my friends... Tina and Chuck are just amazing. They have learned sign language so quickly. They are raising Christian to be bi-lingual! He knows ASL and English. What a leg up on most kids his age. And Christian is just the same loveable, laughing, adorable, highly anticipated, very important, special little (well actually he's huge!) guy he always has been.

Tina explained to me their family plan for communicating with Christian and when I thought about it, it makes total sense. When I'm around Christian I try to limit the background noise and speak slowly and clearly to him. That's not really any different than if I were speaking to any child who's learning the proper words for the world around him. I've tried to master the few signs that he already knows. To me, this is really no different than if another friend was trying to teach her child to speak Spanish and thus asked us to say "agua" as well as "water." Once I got over my own insecurities of not being fluent in ASL, I was willing to try using it more. It's not like Tina and Chuck knew ASL before Christian was born! We are all learning together and I am all for learning regardless of the reason.

And then, there it was, my moment of clarity. I've never seen a more beautiful birthday party. All of Tina and Chuck's close friends and family were in their kitchen surrounding Christian with love and well wishes. We all signed Happy Birthday while we sang it! It was an absolutely beautiful moment when I realized - it does take a village. And I'm not going anywhere. If anything I've got a reason to start getting regular mani's if I'm going to be talking with my hands a lot more! And ASL is so fun! Spirit fingers for applause?!! I love it!