What I Want My Deaf, Blind Daughter to Know About My Own Differences

During the holidays, my daughter, Chloe, and I make the most of every single day we have together. We have adventures with friends, play lots of games, spend time with family and laugh a huge amount. Of course we also get fed up with each other and have plenty of difficult moments. Trying to give her independence while keeping her safe is always a fine balance. This summer, however, Chloe is not next to me. She’s with her skilled multi-sensory workers, her dad or grandparents as I’m recovering from a total hip replacement. I can’t tell you how much I miss her, and the following letter is my response to the situation.

Dear Chloe,

I want to tell you again how proud I am of you, my big 7-year-old girl. You worked so hard at school this year and once again astonished everyone with your ability to learn and keep up with your peers. You told me today you’re not very good at reading, but Braille is hard to learn and your teacher is happy with your progress. Don’t forget she told Daddy what a delight you are to teach.

I wish more than anything that I could be doing all the fun things we do together. Chloe and Mommy time has always been so precious. I’ve loved showing you the world, helping to open it up for you so it makes sense.

I’m sorry I’m not much fun at the moment. You’ve been so brave and brilliant during the time I was in hospital and since I’ve been home. One of the hardest things is not being able to tuck you in at night and have our enormous goodnight cuddle. Touch is so important to you, and our cuddles have always been special and big.

I wish I could’ve put off the operation, but my osteoarthritis was getting bad and I stopped being able to do lots of things with you because of my hip. You always say to me that I’m the best Mommy for you, and I hope my experiences have helped me with this privileged position. When I was little and had to have surgery on my hips, it left me feeling out of place in the world. I had a massive limp and felt really different from everyone else I knew. I spent years trying to catch up, which left a huge hollow feeling inside me. Eventually as a teenager, I couldn’t cope any more and got really ill.

I never want you to be ashamed of any part of yourself, which is why in our house we acknowledge that your eyes and ears don’t work like other people’s, but also how amazing you are and that you can do anything you want to. Being deaf and blind is just a part of who you are, but it should not be hidden away or denied.

At the moment my energy and ability to do things with you is low, but my love for you is just as strong as ever. We are a family that walks a different path. Our cat has three legs, you and Daddy have eyes and ears that don’t work properly and I have my wonky hips. We are perfect for each other, and I can’t wait until I’m back on my feet and having adventures with you again.

In the meantime I do love listening to all the great things you’ve been up to and hearing the happiness in your voice. To be honest, I need our extra special cuddles as much as you do. I’m trying to be patient with myself and my limitations, but I feel like half a Mommy. But like everything, we’re getting through this together with the help of our family and friends, and your daddy is being a complete and utter star. I’m lucky there’s a solution to my arthritis and that I have you, my amazingly resilient child, to cheer me up.

All my love forever,

Your Mommy

Follow this journey on Navigating Chloe’s World.