One Year Ago Today

We found out one year ago today that our baby Ben was deaf. I have felt some old feelings rising to the surface as this day approached, but today I feel happy and blessed that Ben has come so far in one year. It was one year ago that, in the midst of an ice storm, Nathan and I drove Ben to his ABR and I sat with him asleep in my arms for 2 1/2 hours without moving a muscle while the audiologist taped monitors to his head and tested his hearing. We knew that there was something wrong since Ben had failed the universal newborn screening in the hospital 6 weeks earlier, and then the one-month follow-up OAE and automated ABR, but still we figured it was probably just a mild hearing loss. After all, it seemed that he heard loud noises and we had no hearing loss in our family on either side, right? We were completely unprepared when the audiologist returned to the room and informed us that Ben had showed no response during the entire testing time - his hearing loss was profound.

Our world became confusing and felt lopsided. We told our four older children about Ben's hearing loss in an upbeat manner, while inside we felt despair. The darkest part was when I thought about how I would never be able to fully communicate with my son. We spent the next two days researching deafness in children, and came across information on cochlear implants. Unlike the negative impression I had from some media sources, I came to understand that cochlear implants could provide deaf children access to sound and that this device gave them the chance to learn to listen and speak. It was as if a light was lit in the middle of a dark tunnel. Children implanted early were given the best chance of success. We made contact with other parents through the Internet and began calling CI Centers. We visited oral deaf schools and talked with children with cochlear implants. Our every step was to try to get Ben implanted as early as possible and bilaterally. Ben was implanted bilaterally at the age of nine months and activated at ten months. It has now been three months since Ben's activation and it has been a challenging, yet amazing journey. We have tried many wearing options to keep the CIs on our stubborn boy's head. We have continued with AVT therapy twice a week, while trying to expose Ben to language around the clock.

Ben now repeats several different vowel sounds and associates the different sounds with a variety of listening toys. He localizes the source of the sound and always turns to it. It has been amazing to watch this transformation. He is beginning to understand that sound has meaning and he is vocalizing appropriate responses. At thirteen months, he walks so well and plays and delights in his family and his routine. Nathan and I could never have predicted the incredible place we would be at just one year later. There is much work ahead of us, and sometimes we feel overwhelmed, but we also feel closer as a family because of all that has happened. Ben is a wonderful boy, full of love and laughter. I wouldn't change a thing about him, even his deafness, because that would change him and he is perfect and has taught us so much this past year and changed us all for the better. If asked to describe him, his hearing loss wouldn't even be one of the first things I would mention. He is so much more - so playful and sweet and loving. We are blessed to have him in our family. This day and really this whole month has reminded me of the events of one year ago, the suspicions and doubts, and the worry and the frustrations and the fear. But now all we feel is hope and a sense of accomplishment and peace. The decisions are behind us. Ben has his CIs and we have wonderful therapists, teachers, audiologists, and a trusted team in place. We just need to move forward with faith and perseverance and much, much love. We are grateful to all the family and friends, other CI parents and professionals who have helped us along on Ben's journey to hearing so far, and to all those who will help us during this next phase of our journey. We anxiously look forward to what this next year holds for Ben and for us.

A Poem from Ben

As I mentioned in the previous post, my birthday and those of my two youngest children fall within a few days of each other, in the first few days of the new year. It was a busy time here in December and January! Ben is still nursing and wakes up during the night - my other kids were never this hard to get to sleep through the night. I have been overwhelmed at times with being tired and keeping up with all of Ben's appointments and the other kids' activities. My mom just recently gave me a belated birthday present - a beautiful small statue of a mother and her son embracing - it's called Child's Touch. I love it, but the best part was the card that came with it. Apparently, the gift was from Ben - and included in the card was a poem that my mom wrote for me - "from Ben." It was one of the most touching and thoughtful gifts I've ever received and I wanted to share it. Thank you, Mom!

Dear Mommy,

This birthday present comes to you late,

But to get the right gift, I just had to wait.

Together we shared a most wonderful year

Filled with wonder and joy and you always near.

Always together, almost never apart

Nursing and sleeping close to your heart.

Days and nights you had little rest,

(But Mom, sleeping with you is really the best)!

In silence I grew, no sounds did I hear

But in your loving arms, I never felt fear.

Instead every day I learned something new

From you and Dad, and all the kids, too.

You and Dad, Abby, Sam, Grace and Ella

What a great family for this little fella!

While you struggled with work that never got done

You filled my days with laughter and fun.

And after months of research to learn what was new

You decided on therapy .... and implants, too.

So thank you mom for all you have done

And for helping me hear before I was one.

Your loving son,

Ben

We're still here!

Does that ticker say over 2 months since Ben's activation? I can't believe I haven't posted in so long. It is has been so crazy around here. Ben's first activation appointment was right before Thanksgiving. It was followed by 6 additional mapping appointments over the next few weeks since they programmed Ben's ears separately (it takes at least 1 1/2 hours each way to get to Hopkins). Add in Christmas, the many kids' Christmas concerts and parties, and all of my shopping which I had saved for December. Good friends of ours stayed with us over the New Year's weekend. Then two of the kids' birthdays (Ben's first birthday was January 10 and Ella's 5th birthday was January 12), each requiring a party to commemorate such important milestones (my own birthday fell during that same week, but was much less exciting). Then we had the Presidential Inauguration in our DC area, and our final mapping appointment of our initial phase (we were able to map both ears together finally - yeah!) When our audiologist said we didn't have to come back for three months I almost fell off my chair. Ben has also continued with twice weekly therapy appointments (one privately at an AVT center and the other with our county EI teacher). I have been running around driving the four older kids to all of their activities and volunteering at their school, and of course, we have been doing the musical chairs routine of cough, fever, stomach bugs, and flu that is the winter season with small children.

Ben is doing well. We had a very hard time keeping the CIs on his ears (he would fight us but it also fell off once we had it on), so he has been wearing the whole BTE pinned to his shoulders. This has allowed him access to sound and given his incisions a chance to fully heal and us a break from the battle. I felt disappointed at first that we couldn't get him to wear it the way most kids seemed to or the way he was "supposed" to, and I am determined to introduce the babyworn behind the ear again very soon because that is the way we want him to wear it eventually, but this is working for now (well he still pulls them off a lot, but not constantly). Every time I would go to sit down to post, I would get called away until eventually it seemed that there was just too much to say that I couldn't even start, or that I should wait to post until we had video or at least a good photo. I had hoped to do a beautiful birthday video montage like others I'd seen, and post photos from Christmas, etc. When Ben was first diagnosed, it was the parent blogs I turned to that gave me information and hope. I feel strongly that recording Ben's journey is not only important to us, but to other parents who are going down the CI path, and I want to do a much better job of it. I know this will be meaningful to Ben years from now, as well.

Ben's progress has been a little slower than I had expected and at first I felt conflicted and upset about it. His therapists think he is doing great and so I am trusting them and going forward rather than comparing him to anyone else. Ben can distinguish between long and short sounds and can repeat the up, up, up and ahhh (airplane) and oooo (train) sounds. He turns to the source of the sounds. We are working on him selecting the correct toy that makes the sound from a choice of two. No consonants yet. In other news, Ben began walking a few days before his first birthday and he now has 16 teeth! He shows an understanding of where things go, like cups and plates in the cupboard and collecting puzzle pieces or similar toys and putting them together (it's not understanding verbal directions yet but just doing it on his own). We are working on our names and trying to make them each sound a little different. We are enjoying every little advancement. The whole family went to Grace's class yesterday as her student of the week special guests and we talked about Ben's implants and I gave each child a copy of Cochlear's coloring book. Ben was a big hit! To think that it was almost a year ago that we found out Ben was deaf and now the surgery and activation are behind us and he can hear sound!