I try not to ask for a lot in life.
I try to be a good person. I’ve failed at that more than once. I continue to try daily and refuse to repeat the mistakes already made.
I try to lift others up, to remind them of their worth, their talents, their purpose.
I try to be a good parent. I probably try the hardest at this. I also probably fail the most at this. I hear the most about this, there is no shortage of people quick to point out things they believe that I should have done.
I try not to let the words of others who criticize my parenting stay too long in my head. No one is a perfect parent… no one. We all make mistakes. We all have things we wish we would have done differently. We all have things we’ve learned along the way that we simply didn’t know years ago. This is all of us. I refuse to keep getting caught up in what could have been if I would have … X, Y, Z… because 1. I didn’t and 2. You were not here. You don’t know. Really, you don’t know. I mean, I’m amused that so many people *think* they know what it takes to raise my children without being here 24/7… or ever at all… but, there are times that amusement fades.
Right now, shaking the words and criticisms are harder. We’ve been quarantined much more strictly than most for 6 months now. I’ve been literally a single mom for almost all of these months. Not because their dad didn’t want to be with them but because the doctors said no, we cannot risk the health of our children. So, my house is the “safe house” the “germ-free” house. For many months they could only do outdoor visits with their dad, Jen, and the girls. No going indoors, no overnights. Just outside visits that we would drop everything for them to have. Parker refused to go outside, so those visits were primarily Allison. I cannot imagine how incredibly painful that was for their dad and Jen to be without overnight or inside visits for so long, but they are frontline workers, I can work from home. It was easy for me to close off my house. And we did, completely. And they showed up, almost daily, for outdoor visits. They took walks, bike rides, played with chalk, or simply sat and talked. They were here as much as they could be.
You likely are just now learning this. We made an agreement not to be public about the kids only being here with me. We had enough on our plates that we did not need judgment or to answer to others for what we were doing, although it was very black and white and simple. We were told our child would die. This is what we needed to do to keep our children safe. I don’t know if you’ve ever been told that something could kill your child or children but it pretty much scares the fuck out of you. At least it did me. If the doctor told me that shaving my head and wearing purple spandex every day would keep my kids alive, I would do it. We were, and still are, following the doctor's orders.
There have been no friends inside of our house – we got permission from the doctors for Allison to do a covid prom photoshoot with her friends (which was the best!). There were no sports, no school, no anything. Just me 24/7 until recently. That’s all they got… me. And I have tried hard, God do I ever try hard.
I tried to send cards to family and friends as often as we could. It kept Parker writing his name, it gave Allison a chance to stay more connected. We excelled at this prior to the puppy. I set up a computer to the living room tv so we could Skype with family and friends so we didn’t feel so alone and so that Parker could see that everyone had to stay home. Allison and I played card games each evening after Parker went to bed and when we could get him to join in, we’d play Uno with him – sometimes even on Skype with their dad and Jen.
Anything that comes into our house gets wiped down before the kids can touch it. After a couple months of having groceries delivered by family and friends we started doing curbside pick up – it got us out of the house. We didn’t do drive-thru or food delivery for the first couple of months – there was just too much we did not know. We do now, partially because I was not made to figure out 3 meals a day, every day, all by myself. I’m not that mom. If it can’t be delivered or picked up curbside, we have family and friends who are always ready to pick something up for us. They’ve been our lifesavers.
I’ve put keeping the children safe as my main priority.
I’ve put keeping the kids connected to others as a priority.
I’ve put our survival as a priority.
I have been so focused on taking care of everyone, on keeping others connected as a priority, and surviving that I’ve completely neglected my mental health. The last thing I wanted was for anyone to know that I was struggling, that my depression and anxiety were the worst they’ve ever been. I smiled, I laughed, I faked it the best I could through every single day… and still do.
I made sacrifices that I am criticized for almost daily.
Parker is incredibly routine-oriented. He lives off of his calendar. He likes it when there are things on it, he likes to be busy. We update his calendar almost daily, it is what kept him grounded and happy. And suddenly it was gone, wiped completely clean. Not only did we take off all of his Special Olympic practices, the state games, and all of Allison’s activities but we wiped off all of his visits with his dad.
Just stop for a minute and think about how much the change impacted you.
Now imagine being a routine-oriented kid who’s calendar is his grounding point and it’s gone. All of it. The routine is completely gone. On top of that, no more fast food. No more running to the store. No more having friends over. Everything is gone. And suddenly.
That threw my boy into a tailspin. The calendar gave him a feeling of control. He knew what to expect every single day. And that was gone. He needed something to feel in control so my cellphone became that substitute.
It meant that text messages would get deleted. Facebook messages would get deleted. Phone calls would not be answered. And I would never know about either.
And, I could not leave his sight. Where he would be is where I would be. I could not work, I could not take classes. I could simply be where he was and our world was calm. If I opened my computer, our world was back in tailspin.
This is what has kept his anxiety down. Keeping anxiety down is key in this house. It prevents meltdowns and we were not in a situation to have a meltdown.
I knew how much his dad wanted to see him in person but it meant getting Parker outside. So, against everything I wanted I did what had to be done to get Parker outside. I offered up turning on an inflatable. And just like that, he was outside. He was able to visit with his dad, Jen, the girls, Rylee and Michale.
Of course, one inflatable in the garage turned into one inflatable on the deck to get him out into the back yard and not just the garage. One inflatable turned into four and for several months now there have been 4 huge Christmas inflatables inflated on my back deck every single day… all day. And, honestly, I did not give a shit. It was the least of my worries.
In late June we were given the option of choosing 2 houses that we felt were safe that we could trust the people in to follow guidelines and keep their house as safe as possible for the kids so we could do indoor visits. We choose their dad’s house and my parent’s house. Indoor visits were not overnight visits though.
Those came in late July and with a condition… I still had to keep my house as a safe house. While the kids were now able to stay the night at their dad’s once every 10 days, we still were not allowed in stores, and I still need to restrict my visits to outdoors with the exception of my parent’s house.
Late July also brought Parker’s first quarantine meltdown. And honestly, his first meltdown like this in a few years. Years. Read that again… YEARS. And it was bad. I don’t often talk about Parker’s aggression, we’ve come so far with it that it rarely is an issue but when it is an issue, it is seriously an issue.
And then, in mid-August, as secretly as we had changed the kid’s visitation without being public, we brought my Grandma home to my mom’s house for hospice.
While I agree with both decisions to be private, they took a toll on my mental health. And seriously, God bless Melissa and Sonja because they’ve heard every frustration and virtually wiped every tear that I’ve shed these last 6 months and talked me off the ledge more than once. There were times I became so withdrawn I didn’t even talk with them.
Keeping everything private wasn’t hard for me but it was hard on me.
I’ve been slipping more and more each day, especially since losing my grandma. Losing her crushed my soul and still doesn’t feel real.
While I’ve been slipping, the words from others – especially ones they tell others thinking they won’t be repeated to me (insert eye roll here) compounded with the ones being said directly to me I’m having trouble shaking. They leave me doubting my parenting and leaving me incredibly angry. Because, honestly, no one was in my shoes but me. No one. No one else was in a position to remove the kids from the world and be here as their only person to help them through it. Through something no one has ever lived through before. Something we still are trying to understand. No one has been in these shoes. So being critical of me for Parker having my phone or for me having inflatables up (we have one up in the living room now, too) is really out of place. Yet, it is taking up space in my head. My depression and anxiety are bad, like really bad.
And that brings us to the pickles.
We made our almost daily trip to Dairy Queen for some chicken strips for Parker. the other day. We did the order we do almost every day. 6 piece chicken strip basket without the dipping sauce, no drink, and a side order of pickles. We ordered Allison the same. They repeated the order back and we got our order and went home to eat.
Then it happened.
I opened the boxes of chicken strips and there was gravy, thankfully still in its container and not spilled. This is a crisis in itself because we said no gravy but it wasn’t catastrophic. What was world ending was there were not any pickles.
Yes, I should have checked before we drove off but we’ve been doing this for months and it’s been right every single time. I didn’t see anyone new when we were at the window. I had no reason to think this day would be different. But it was. There was not a single pickle to be found.
At first he laughed it off… “hahaha, the old guy ate all the pickles” (the old guy is always the reason for something not to go right and it works, I don’t know who the old guy is but I appreciate him.) but clearly that was not how he really felt as we would quickly learn.
I grabbed the hamburger pickles from the fridge and a small cup and quickly poured some pickles into the cup (I hate pickles, I don’t touch them – they freak me out). He hated this. He didn’t want these pickles.
I was pissed. And exhausted. And done.
And angry. Super fucking angry. I don’t ask a lot but I DO ask that you get our order right because when you mess up the order of a kid with fragile x or autism, you’ve really ruined our day. Everyone’s day.
This was my tipping point.
This is when I quietly said out loud after he walked away angry at ME for their mistake that I hated my life. That I hated Fragile X. That I could not keep doing this.
I don't hate my life. I hate where we are in life right now and the worry of not knowing what I will do next. I hate the uncertainty and the unknown of this virus. But my life, I do love. I don't hate Fragile X, I do wish we could live without it or at least more easily with it. And even when I feel like I can't keep doing this, I know I can and I will.
I was done. Seriously, done. I could not do this anymore and that scared me.
I lost my happy tone and asked him what he wanted me to do. He didn’t have an answer but I could see his frustration growing and knew that I was pushing him way too much. He was already thrown out of sync, I couldn’t push this anymore. So I grabbed my keys and wallet and said, “FINE. I will go back to Dairy Queen and get your pickles.”
But he didn’t want that either.
I was fighting back tears now.
I was out of solutions. I was out of energy. I was out of life. And I knew I could not handle another massive meltdown.
He picked up his plate and put it in the microwave. He was done. He simply wasn’t going to eat. He also wasn’t going to let me go back. He would simply be hungry and there was absolutely nothing I could do to make him eat.
And it crushed me.
I’m tired of being completely defeated.
I need your help. I need you to understand a couple of things. I need you to understand that you do not know what others are going through. Some of the “happiest” people I know are fighting depression or anxiety as their biggest demon and not always on the winning side. I need you to understand that our special kids are struggling and their parents are doing everything they can to keep some balance in their lives. I need you to take this pandemic seriously, wear your masks and social distance. I want my life back. And no, it won’t magically happen after the election, it’s a global pandemic. This isn’t just a US issue, it’s a WORLD issue. So please, please do the right thing and wear your masks, stay home when you can, social distance when you are out, and wash and sanitize your hands frequently. I need you to be a part of the solution of getting our lives back. Our kids need it. We need it. Our mental health needs it.
And most of all, I need you to understand our kids, even our adult kids with special needs and do your part to help them through these trying times. They are isolated, too. And when the one thing we have in our routine is getting chicken strips, please, please, please be sure the order is right and don’t forget the pickles.