Since I live in New England where we are buried in several feet of snow and expecting more (seriously Mother Nature?! More??!!) I could be referring to an actual, literal Avalanche. But I’m not. I’m referring to the Avalanche of emotion that special needs parents go through on a daily, sometimes hourly, basis.
I heard once that all special needs parents have PTSD without ever getting to the P because it’s never over. I so often refer to our life as some variation of Groundhog Day.
Some moments it’s the fear that comes crashing down and robs my lungs of the ability to breathe. I, and many SN parents, literally fear for our children’s lives. Whether their diagnosis is seizures or a different neurological disorder, or a mito disorder or diabetes, we really must face that our children are at much higher risk of death. And while I believe that it’s important to acknowledge this, because knowledge is power, I also believe that it’s important not to dwell here. I do not want to spend the days that I DO have with my child too afraid to live every moment with her. That doesn’t mean that I don’t have moments where it smacks me in the face like a ton of bricks Because it does. Regularly. (like when she’s convulsing and blue and I feel like I’m being forced to see what she would look like in death…again). But I let myself acknowledge it for the moment and then move on. I try not to judge myself for those moments of what I perceive as weakness but I’m not always able to follow my own advice.
Usually accompanying the fear for me is sadness. More specifically grief. It’s a process, probably an ongoing, never ending process, of grieving every missed milestone. Every lost skill. Every regression. Every seizure. Every missed gymnastics class. The childhood that I envisioned for her. The parent I thought I’d be. The experiences and traveling I thought our family would have. But again. While I acknowledge that I’m grieving and sad, sometimes heavily and darkly so, I fight through it. Though I allow myself to give it a moment because those dreams deserve to be acknowledged too.
So many of my fellow SN Moms express anger. I read a great quote (I’m a quote addict! What? You didn’t know. We must not be FB friends yet!) that said “Anger is just sad’s bodyguard”. I think I’m too exhausted to have a bodyguard so I missed this step. Or it’s part of the grieving process that I haven’t hit yet. The one thing I never let myself indulge in is the why me’s. It’s not productive. It can’t help you. If you have them you are only hurting you. Please let them go.
The one thing that consumes me every minute of every day is exhaustion. I live in a perpetual state of tension and awareness that exhausts me to my emotional limits. Factor in the fact that Haley has had nocturnal seizures every single night for at least 2 years and it’s a recipe for bawling in your coffee over nothing and everything all at once. And I have insomnia. Not the oh I hard a hard time getting to sleep last night kind, the kind where I desperately crave sleep and the harder I chase it the further away it seems. But mostly it’s because I’m afraid to sleep too soundly and miss a seizure, THE seizure, and despite the fact that we have a baby monitor, an Emfit movement alarm and a service dog, I still am afraid. (Remember what started my emotional Avalanche. Fear. They’re all intertwined) And so I have become the person I said I’d never be; groping for coffee in desperation just to get through one more hour before I rinse and repeat.
Mixed into my Avalanche is shame. Not of Haley. Not ever. Of myself. Of my inadequacies. Of all that I haven’t or can’t do for her. Ashamed of the exhausted, fearful, sad, overwhelmed Mom that I have become. But part of that is my grieving process (told you they’re all intertwined!) and grieving the Mom I thought I’d be. This may not be in every SN parents Avalanche. As parallel as our paths may be our journeys and emotions are as unique as our children.
And when the Avalanche begins with whichever emotion sets it off I ride it from one to the next. Sometimes in moments, sometimes in days. And I claw my way out to find a new emotion in my Avalanche. Hope. Hope for Haley. Hope that someday even if she still has epilepsy that her quality of life will improve. I have hope every time she surprises me with a new word, or skill. And when she teaches me to never give up. She is teaching me to believe in myself and have confidence and she gives me hope that she will manage to have those as well despite navigating her own emotional and physical avalanches.
And through my hope I find purpose. A sole minded focus and intention on being someone who will HELP others who are struggling rather than just be a bystander. I can bend all of these emotions to fuel my purpose. I can help others, hopefully including Haley. I can do it with my voice. By speaking up and sharing our story even when it’s hard. Even though it opens us up to a level of judgement that can sometimes trigger my emotional Avalanche all over again. It’s worth it. And I can do it on my actions. (Watch for a seizing hope announcement soon!)
And in my purpose I find joy. When I kiss her forehead after a seizure and she wraps her arm around me neck in a death squeeze. I am overjoyed that she reaches for me with confidence that I’ll be there. Because I will. Every step of the way. Even as we slide along the Avalanche. Together.