I wrote this original post a year ago and felt it needed adjusted re-blogging now that I am one year wiser.
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 I’ve been at this almost two years (!!), this is my life. These six bullet points make up a lot of who I have become. One year ago, however, I let these six statements define me. Since that time, I’ve worked to include myself on the priority list. My emotions, my way of processing what’s happened or going to happen are vocalized with a dose of patience. I actually do feel quite a bit wiser.
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 mother’s with similar experiences. I cherish every email I get from those of you I’ve never had the pleasure of meeting yet. I added Google analytics to this blog not to see how many people were reading but to see where. Having a reader in almost every country blows my mind and eases the loneliness. Honestly, connecting with others through this blog has helped heal pieces of myself.
Secret Two: Marriage. There is a unique complexity to any marriage where there is a child like Landon. 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, except for going through the motions. As Bo described me once.. I was a glorified roommate. Ouch. I believe that the distance that grew between us was in part because I felt I did everything. Worked full-time, mothered full-time, short order cook, maid, and special needs coordinator. I was exhausted. Adding another list of things to worry about was impossible back then. As I grew and learned more about Bo’s emotions and when I actually asked for help… he was incredible. Such an amazing father, it’s a joy to watch them together and makes me love him even more. I worked damn hard last year to remedy who I was to him and reconnect. In the beginning, you band together. You embrace each others shock, hurt as well as the happiness. Then life moves on and things get complicated. But now, as time always does.. we’ve healed. We have major highs again, and some lows like all couples. I’m happy to report the former greatly outweighs the latter. Some of the lows are awful and core shaking, but they don’t last long. My emptiness and sadness I’ve shared in former posts are felt less and less. It’s like any garden though, it always needs tending.
Secret 3: Being Offended. Perry claims that we’re not easily offended. This is and isn’t true for me. 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. I described only a few posts ago what it was like to be gawked at by three teenagers. Many told me to simply invite them over and tell them about Landon. I would never do that, though, even though I proclaim that I’m an activist… see point number one.. I’m also a loner in this journey most days. For now my advice is to smile at a parent with a child like Landon. Smile…don’t just stare. Stares are silent killers for us.
Secret 4: Worry about dying. I feel like this is where I’ve gained the most strength. The awful and all consuming thoughts of losing Landon are tied to surgeries. So, I know they will resurface. We have possibly another eye surgery, implantation, activation, ear reconstruction, possible work on the area around the eyes and maybe her jaw. My battle with these demons will continue, but for now my heart rests easy. There are no more trips to her crib at night and studying her breathing. The last time i truly lost it was when I scheduled another eye surgery. I just unscheduled it, so my heart again… rests easier.
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. It’s a very very big deal. I knew that a year ago, my how much this has evolved. I went from self diagnosing Landon with sensory processing disorder, to doing OT weekly, to recognizing and understanding that she has mild sensory processing issues. She most likely will continue to process the world around her in a unique way- toe walking, crashing into things, climbing and a profound hatred of towels or getting her hands sandy. She’s growing into these traits though, doing them less, and I realize it’s just how she is taking in this wild world around her. And… that’s OKAY.
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. This has changed a bit for us. I’m no longer weepy when another mother exclaims more words that were added to their child’s vocabulary. Landon says some words, mostly sounds that we work on with her in speech therapy. She babbles her little German/French language to herself all day, most of the time while mimicking being on the phone by using a remote. Scary that’s how she must see me all the time. But I have let go of what is described as normal. This girl always works at her own pace. Doing awesome things in her own time. Patience…
Again, reminding y’all that you’re not alone in these journeys.