“I know you don’t feel strong, but trust me when I say you are. You have been a warrior for your daughter-not just an advocate-you have done more than jump through hoops. You have been an amazing example to them of what commitment means; what love is through your marriage. You have proven time and time again that you radiate strength, whether you realize it or not. Those of us around you know that. We see that. Most people wouldn’t be standing. But you are. You didn’t walk away. You didn’t stay complacent. You fought for your child’s life. You fought for your relationship. And you can make it through this too. One foot in front of another. One day at a time, one hour at a time-hell, one minute at a time if need be. Just focus on that. I know it’s not fair, life is absolute shit sometimes. And unfortunately, we can’t always change that. But we can just keep swimming…Always.”
As a child I never felt a strong connection to friends after we moved from Scotland. I always had insecurities and felt like the “third wheel.” Coming into a social group in 7th grade can be tough. Sounds funny I’m sure, but so many kids have made their friendships in Kindergarten and held onto them through the years, especially in a small town. Since I had Ailbe I’ve made some incredible friends and reconnected with old friends that I feel even more so bonded with now that motherhood has brought us back together. When times get really tough, and life throws us some additional curve balls, it is these friends that I reach out to the most. Last night, when I was not doing so well, one of my dear friends sent me the text above. I can’t tell you how much her words meant to me and how they came at the absolute best time.
You see, I’ve always been incredibly tough on myself. I have terribly poor self-image, and my confidence has been shot to hell after everything over the past few years. I used to feel strong, confident, smart and beautiful. I always felt I had something to offer. These days I feel lucky to make it to bedtime. So, naturally these words of “pick me up” love were just what my heart needed. In these words, I found my confidence. My confidence in not only myself, but in those true friendships that I was also doubting lately. Doubt, a.k.a. paranoia, is another strong point of mine. I honestly think paranoia comes from years of being betrayed but also from years of fighting and digging for what should be a given but oh so often isn’t. Life, for me, is lived in a constant state of fear and as much as I am told (and try so bloody hard to) live in the moment, it’s quite difficult with many small reminders throughout the day that we are oh so “different.”
I’ve been struggling to write subsequent blogs to those I’ve already posted. I feared that I would be the “depressing woman” who no one wants to read, the lady that others pity, the one that everyone hopes has it easier sometime soon, but doesn’t know how to help. I thought to myself, what do I have to offer the reader? Infantile Spasms is an incredibly small community as is. I’m not a fitness guru. I’m not a nutritionist, fashionista or craftswoman. What the heck was I going to bring to the table? Fear, self-doubt and confusion all filled my mind. But recently, I became incredibly inspired by a fellow writer Kristi Campbell who spoke about “what being a special needs mom feels like.” She read her blog about her experiences to an audience. She made us laugh and made us cry at the same time, but boy could “we” relate. One of the parts I connected with so clearly was when she spoke about other moms complaints on social media. One mom had complained that her two-year old had called her fat. Kristi joked that she wished her two-year old knew what fat was and would’ve been thrilled to be called “fat” herself. Hearing Kristi talk made me realize that I need to stop worrying about what others “want” from my blog and be true to myself and write the truth. The strongest words spoken are those filled with truth, those from the heart and not sugar-coated with lies.
It’s with a heavy heart that I write this blog tonight. I have let my fear of the future consume me in these hours and I can’t seem to see through it. What if she doesn’t heal, what is she isn’t able to safely live on her own, what if Isla feels burden, what if our love doesn’t last another challenge, what if my family abandons me, what if we can’t keep paying the medical bills, what if everyone chooses to forget us? These are the thoughts running through my mind as the tears roll down my face. Ailbe sits beside me watching Tinkerbell (her favorite) and without a care in the world. But, all I can think is I had to drug my child tonight, again. I’ve been praying daily that on Thursday we may hear the news I’ve been waiting for almost three years to hear. “Let’s taper the meds.” Sounds easy enough but since you know I’m paranoid, you can imagine where my mind goes. What if she really struggles during the taper? What if she becomes aggressive? What if she regresses? What if they return? What if I can’t handle it? All of these thoughts and a thousand others, run through my mind at any given point in the day. If you’re reading this blog you know we went to have a VEEG done a few weeks ago. The preliminary results (which we weren’t going to get until February 26th but mama emailed the doctor until he responded) were that NO spasms were seen but as expected she still had abnormal brain function. What does that mean? I have NO CLUE! Did they tell us exactly what we expected to hear? YES! But, her brain can’t ever function “normally” since she has cortical dysplasia and such can’t be physically healed. I’ve prayed 5 times a day for the last three years that somehow it would happen but, it didn’t. Can she still improve and lead a relatively normal life when off meds? Yes, we think it can happen. Well, I hope that’s what I’ll hear next week but we are relatively sure with incredibly hard work we can make it happen. Until then, I’ll be sharing my life because the blog is about my purple pack after all right?
You can listen to Kristi’s speech here- http://www.autismspeaks.org/blog/2014/07/22/what-being-special-needs-mom-feels