When Landon was only a few months old, I read this article in the Huffington Post – 6 Secrets Special Needs Moms Know But Won’t Tell You. At the time I read it, I thought I understood each point. I even posted to Facebook about how much I identified with it. I really thought I got her… this author Suzanne Perry. But as time usually does… it deepened my understanding of these so-called “secrets."
Now that we’ve been at this almost a year (whoa a YEAR!), this is my life. These six bullet points. There is more to me, sure. But recently I was quietly thinking to myself, after a battle of a day, that these six things are starting to define me more than I realized a generic list ever could.
Secret One: Loneliness. I sometimes think I prefer to be alone… it is so rare to get time actually alone when you have a child. What I realize though is this loneliness exists even when I’m around a ton of people. You feel alone because no one gets what it’s like to be you… except other special moms. I cherish every email I get from those of you I’ve met. My friend Brooke over at the Conley Chronicles is a perfect example of how we found each other online, have never met, but know each other possibly better in some ways than our friends we see all the time. I know her heart. But in general, I feel pretty lonely in my emotions.
Secret Two: Marriage. My oh my. To explain it simply, which it’s not, when Landon was born… I became her mother. A special mother. And I stopped being a wife. I’m now in the midst of trying to remedy that slowly and methodically. But there it is. In the beginning, you band together. You embrace each others shock, hurt and happiness. Then life moves on. As I delved into this special parenting, the extras, the constant worrying along with the normal parenting details, I only went through the motions with Bo. Until recently that is. Now it’s the juggle of wifedom and motherdom. I have no great advice on HOW but I know that I’m trying. I’m showing up for both of them. That’s all I can ask of myself. That’s all any of us can ask of ourselves. Also… read my Pineapple post. That word is still be said on a daily basis round these parts. We are a priority again though. That’s an important step to take.
Secret 3: Being Offended. Perry claims that we’re not easily offended. This is and isn’t true for me right now. On one hand, I want people to ask what her hearing aids are….instead of stare. I love discussing what she has. I’m the proudest mother on the planet. On the other hand, when I get the pitiful stares, I want to attack the person. In one post, I poetically described how I smiled at a staring woman to prove to her that I’m strong and capable. I’m out of that phase for the moment. Staring makes me crazy. Bo said the other day… "I mean, I might stare if it wasn’t my baby… these are odd looking hearing aids." Okay mister… you’ve got a point. I think that sensitive side of me will turn to stone as we all grow on this journey. But for now, smile at a parent with a child like Landon. Smile…don’t just stare. Stares are silent killers for us some days.
Secret 4: Worry about dying. This is the big one. The whole inspiration for my post today. I am constantly, cosmically and now nightly obsessed with death. It used to be infrequent… my thoughts about her choking or not breathing were consistent with new motherly way of thinking/worrying. Over time, you get over that. You just want them to sleep and you trust that they’ll sleep soundly. BUT. Enter solid foods and although it should be an exciting time of celebrating firsts, I’m gripped with fear. Her airway is so tiny. I cut food into microscopic bites. And then after dinner, I obsess that she has something possibly caught in her throat. I read the most tragic story about a boy with TCS that choked and died on a fruit snack. It’s burned in my brain.
So I’ll now admit something that I’ve never told anyone. I get up almost every night and listen to her breathe. My subconscious wakes me. I go in there and lean closely to her to hear her breathe and then I sit on the bed next to her crib and watch her for a little while. Sometimes I pray. Sometimes Kingsley comes. It’s a nightly pilgrimage to appreciate her. It’s also unhealthy for me. I’m in this place where it’s almost like I don’t trust God. I and the nanny and Bo do all we can to make her food small enough. I still think it’s possible… her choking. I wake thinking about when she’s older and her friends share their food and ….. what if? What if she chokes and I’m not there? Do I even know CPR well enough? This is what I think about every day of my life. It’s morbid. It’s unfair. This is my biggest secret to share.
Secret 5: Touch. Yes, touch is miraculous for all of us. It’s amazing for babies and adults equally. It transforms everything and especially for kids with hearing loss, this is a very very big deal.
Secret 6. I’m changing this to the gift of any speech from the words "I love you” since we’re at a different phase. Working CONSTANTLY on speech therapy like we do, you know what your child should be saying, babbling or responding to. You set monthly goals and for the past 10 months and we’ve had one goal remain on our list for many months. The consonant- vowel- consonant sound. Baba, dada, papa, mama. We didn’t care what it was. We needed to hear that sound. I had seriously started to worry. And then on vacation 2 weeks ago… we got it. Mama. MAMA!!! The hardest of them to say!!! And ya know… it’s mama. I lost it. I cried. I videotaped it. I celebrated. Her saying anything is a bigger deal than y’all can imagine. Words, sounds, repetition from what I’ve said. All of these things are true gifts.
So there it is. My life in six secrets. Six sentiments that encapsulate so many of my thoughts, fears and struggles. If you’re out there and haven’t met anyone else feeling these things… you are SO not alone. You also have a friend… so don’t hesitate to email me.
Sending y’all love and continued strength to fight another day.