Something shameful to admit as a parent is when you feel that you have given up because you are supposed to be the hopeful fighter, and advocate, while also determined but strong and tender. The reality is much more sinister and painful since there are days when surviving is all you can do. At least that is how it feels for me.
There are moments when I feel so beaten down that I wonder why we even do this. It could be by the lack of progress. Maybe it’s a recent regression. How about the never-ending fight with insurance companies? IEP, the process, or general lack of ability to know if it’s even followed – or worse, knowing it isn’t. A new diagnosis or issue because a new treatment is causing other side effects. But somedays it is just straight life. It seems even darker when I feel the hard work isn’t making any difference, and the question, “why are you working so hard,” goes from my head to my heart.
In these last few months, I have been in survival mode. I half-jokingly declare, “I am just trying to keep the kids alive,” but the reality is much more profound. I am trying to keep my sanity. After years of being pregnant, having babies, breastfeeding, being a working mom, being a stay at home mom, helping my husband follow his dreams by moving not once but twice, keeping my patience with my daughter while teaching her to read and the hours of math homework, never saying no when people ask for my help, trying to stay strong when telling people about the boy my son was before his regression, trying to care for a child who doesn’t make it easy, and fighting for a marriage that seems impossible to repair…I feel like I am breaking.
But I’m not alone. Living through a pandemic is not anything that any of us thought could happen in our lifetimes. Most people thought this idea was no more than a documentary to watch on Netflix. It’s easy to see that I am not the only one who believed that, as I feel like I’m watching what feels like the world crumbling around me more daily. Grocery stores were empty. Toilet paper was a commodity. Schools didn’t know how to teach our children if they couldn’t be in the same room as teachers. Scientists couldn’t predict or agree on what would happen next, and doctors pleaded with us to stay home while others said this would pass. But when I see on social media the smiles, pool pictures, perfect baked goods, gardens, adventure pictures, one can question, am I doing enough? Is surviving the best I can do?
Having so much pressure is immense. I put a lot on myself. But it doesn’t help to have teachers, therapists, and doctors adding to the burden daily. I know I’m not alone in this. While I am sure that some parents are thriving with all the telehealth and zoom options, others are gasping for air from the frustration of trying to figure out how to get their child to engage. “It’s okay, mom,” the therapist says as I am near tears because he won’t do for me what he will for them. Is it okay? Because it feels like a colossal waste of money, time, and sanity.
Many of us knew what was happening as the schools closed, but thought this might be for a few weeks, and now over six months later, for my family, the tone has shifted dramatically. The first few weeks were filled with binge-eating ice cream and a drink with dinner. As time went on, I committed to a goal of health. What better time then when you are trapped, and the thought of going to the grocery store seems like it’s harder than it’s worth for more ice cream?
But unknowingly, I just put another pressure on myself. I had to work out. I had to eat right. I added another level of stress and anxiety to the plate.
Right now, I am exhausted. There are days my daughter asks me to play, and I say, “soon.” I make no effort as I vacuum or clean up the plates from yet another meal I had to cook, so my daughter thinks I enjoy cleaning because I would “rather do that than play,” in her mind. I cannot see the light at the end of the tunnel or appreciate how lucky we are, again, another level of guilt and pressure I put on myself.
The worst part of all of this is I have endless love for my family. All I see is the infinite list of things I didn’t do, instead of what they truly need from me, which is my time and attention. Even as I am writing, editing, recording, emailing, organizing, it should be time I am with them or better yet, sleeping. Even as I write this, my daughter wants me to read her a bedtime story, but my bandwidth is all but gone for the day, and so is my husband, but he has no choice but to push through until he hands the baton back to me. So, I stop, help her fall asleep, then go back to work through the hours of the night. And that’s what we do. We take turns pushing back and forth until we are about to crack, and we look at each other and wonder how much longer this will last?
Our son isn’t going to get better to the point of ever being able to care for himself. With the added pressure of a pandemic, we are burning out faster than expected. I imagine a lot of other families feel this as well.
I wish I had an answer for you and myself, but all I have is, just don’t give up on yourself.