Wednesday, May 20, 2009

It's Time to Name Names

As we approach Christian's official hearing birthday (5/27), I wanted to take some time to reflect on this past year's journey. Over the next week, I'll be focusing in on some of the important aspects that have helped us get through this challenging, yet exciting year. Today, it's all about support. And today, it's my opportunity to properly thank and give the much deserved "shout-outs" to everyone on our support team.

The success of a child's CI depends much on the support of his parents. We're the ones who are responsible for ensuring that therapy is attended and carried out. We research and make sure that our IEP goals are set and maintained. We troubleshoot the equipment. We are their primary language models. We cheer for, celebrate with, and cry for our kids. The rehabilitation of a CI child really becomes your full-time job. You neglect yourself. You neglect your marriage. So, where do we get our energy? Whose actually supporting the supporter? Fortunately, we had a whole team of folks behind us every step of the way.


To our parents, grandparents, and siblings, you've been there since day one. Supporting us. Listening to us. Loving us. You've supported our decisions. You've learned a whole new language. You've laughed with us, cried with us, and hugged us just when we needed it. You've traveled countless trips to just be there for us when we needed you the most. You've helped in ways immeasurable. Throughout it all, you've loved our little guy for who he is, and loving us for who we are as a family as well. You've spoiled him rotten, and eased so many burdens on us. We are so grateful for you. Mom, I'd like to particularly thank you for always lending and ear, and listening to me over countless hours over the phone. I think you'd make an amazing therapist.


Ali, Therese, Natalie, Jaclyn, Kate, Erika, Jenny, Jenn, Buffy, Alison, Laurie and Janine...because of you, I've kept my sanity. You've answered the phone at midnight when I couldn't sleep. You've never asked why, you've only asked "How can I help". You've left work meetings to be with me, traveled long distances to support me. You always understood why I felt the need to grieve, but also helped me celebrate even the smallest successes. You've always seem to know when I need a break, and understand the nutty schedule we keep with appointments and therapy time. You've listened to me go on for hours and hours about picking an implant brand, all the while reminding me that I'm making the right choice. You've let me have my quiet time, you've let me have my down time. You've reminded me to not lose who I am in the middle of all of this, but at the same time, celebrated who've I become. To all of my girlfriends, from work, from school, from the neighborhood, from PEO, from the beach...thank you for always praying for us and thinking of my little guy.

Matt, Brian, Dave, and Ted...thank you for supporting my family, and most of all my husband. Thank you for being there for him. Thank you for being his support group. You've known him for 30+ years, and understand him better than anyone. Your 3 decades of friendship is so admirable, and I am so grateful that he has you all in his life.

Margarita Mommas, thank you for helping me escape the insanity of this life with much needed playdates, park dates, and happy hours. The toughest job I've ever had is being a Stay-at-Home Mom. You've made this life so much more fun, and more manageable. Thank you for always including my kid, and teaching your children the ins and outs of Christian's deafness. We're so lucky to have you around the corner and in the neighborhood. Your friendship is one of my greatest treasures, and I'm so glad that our children get to grow-up together.


It's hard to describe exactly what something like this does to a marriage, however if you've gone through this, you know the emotional toll that I'm talking about. Christian was activated just days after we found out that we were pregnant with Liliana. Combine the exhaustion and stress from the CI journey, with the exhaustion and stress from a pregnancy, and you get a very irritable and unpleasant wife. Chuck, we were just newlyweds when we had Christian, and dealing with his deafness in our very young marriage certainly was a challenge. I know at times I was more of a Speech Pathologist and Teacher of the Deaf than a wife. Yet, you trucked right along with me. Despite the long hours and pressure, you have made it possible for me to stay at home with our children to concentrate on Christian's rehab. The pressure, both financial and emotional that you have endured in unreal. I'm thankful to always have you as my confidant. I'm thankful that you are a hands-on type of guy, always lending a hand with our kids. Our children are so lucky to have you as their Daddy, always supporting them and cheering them on. I've learned to rely on you for normalcy, and for love.

Christian's therapy team has also given us an amazing amount of support, however I'll be focusing on them, as well as the community of parents that I've met through various list-servs later this week.

If you're a parent of a newly diagnosed child, or if you are just starting your family's CI journey, look around you for the support that I can guarentee you will need. Don't attempt to go through this journey on your own. Know your support group. Don't be afraid to ask for help (although I am sure people will be clamoring down to help you and your family). Most of all, try not to be afraid of the journey. You'll hit bumps in the road, and there will be set-backs. However, with the love and support of your family, friends, and spouse, you WILL get through it.


The Multi-talented and Menially Employed, J.D. said...

It's been wonderful to see how Christian has progressed and how you have grown and adapted. He's amazing and I know it's largely due to your work with him. Congratulations to you all!

Jodi Cutler Del Dottore said...

Beautiful...and you are a beautiful family...sharing your journey has been kind of a cathartic experience for me. So, cheers to Christian and happy anniversary! You've come a long way...

Jax said...

Sending lots of love this week and always.... <3 you all!