It has been a year since my last post, and I honestly don’t expect 1 person to read this but a lot has been swirling around in my head the past few months. So, I seek solace and clarity in a space that feels removed and distant.
Sunday was Alphabet Kid’s 9 1/2 birthday and for some reason, it hit me hard. He is no longer a little kid and he is a kid that keeps getting harder to navigate. To say I live on egg shells and fear is an understatement. He is almost to double digits, closer each year to feeling like he is old enough to seek the independence and the spite he craves. Sometimes I joke that if he graduates high school, that will be enough. A huge win. What I’m not saying is that if he graduates high school that means he is still alive. Or not lost. Or every possible rabbit hole of a nightmare that most mothers imagine. He is 9 and he already thinks it is perfectly reasonable to walk home a mile each way (with 2 major intersections) between school and home, and stay home 2+ hours by himself, simply because he is a “big kid.” And when I assure him he is not yet old enough, I get an arsenal of hate, both physical and words. Which definitely proves my point, but he can’t see beyond his reality, which most definitely is not my reality. Granted when I was 9, and even younger, I was a latchkey kid but as much as he and I are similar, we are vastly different not to mention that I parent a lot differently than my own mother.
I adore him more than anything, but sometimes I don’t like him, and that is a hard pill to swallow. He can greet you with a hug and a smile, or grit his teeth, tell you to shut up or simply ignore you. As a parent who has always tried to do everything I possibly can for him, the pile of sea salt in the wound starts to have a cause and effect. Rationally, I know he can’t always control his mood, his lack of filter, or his extremely short fuse, but there are days when I wonder what it would be like to parent a neurotypical kid who doesn’t challenge every request, who can appreciate gifts of time, love and items, and who can get through a day without a burst of anger.
Life would be hard enough just navigating through the day, but when you are the middle of a blended family, the weight sometimes feels too heavy to breathe. I feel myself retreating, both physically and emotionally, in order to save myself from being torn in two. I am not in denial that my wife and my son can’t stand each other, but that doesn’t fade or dim the love I have for both. She is an amazing mom to our youngest, so I know she has it in her, but she can’t see the forest through the trees, or the boy through the diagnoses. Or understand, truly understand, that he can’t always control himself, nor does he even remember his words, actions or missteps after the fact. Unconditional love is a powerful force of innate maternal instinct that she does not hold for him.
When he isn’t around, our household is smooth and calm and we parent the almost 4 year old fantastically together. We have it in us. We can work as a team and we can support and foster a household of love. But, a switch happens when he arrives back home, something that I look forward to, until the first episode or outburst, and the air remains toxic until he is gone again. It’s an exhausting hamster wheel of existence where the days are long but the years are short. Because, he is already almost 10.
In the last year, he has remained medicated 365 days a year. His bipolar medication has been upped in dosage to account for his growth. He has completed 3rd grade and had a pretty fantastic year. He won a citizenship award at school his character, and was well loved by staff. He still has an IEP, starting playing football-which he adored, and started 4th grade yesterday, another reason for my emotional crisis of growing up. He loves the damn XBox more than anything or anyone in his world, and yes, I regret that Christmas gift. Hindsight. It is his focus for existence and the 30 min daily, or 1 hour on non-school days is never enough. But I think I am not alone in this parenting struggle. Right?
Fighting with the screen time limits are exhausting. Entertaining him when he isn’t on a screen because he seems incapable of doing so himself, is exhausting. Parenting a special needs child, while also parenting a very active 4 year old (almost), a spouse with mental health and self-esteem issues, and working an average of 50 hour work weeks outside of the home, is exhausting. I’m on day 7 of working with not a day off and I have 3 more days to go. Then 2 days of a family wedding where both of my kids have a role. Some days, most days, it just all feels too much. But, I love my kids, I love my wife, I love my job and I keep putting one foot in front of the other. Because what other option is there?
In five weeks, I get to go on an actual vacation. A vacation where I am not visiting someone, where hotels, and amusement parks, and restaurants, and resort pools and nothing that feels familiar or homelike is involved and I am stoked. It has been 2 years since a big vacation and my damn soul needs it. And it isn’t a vacation with both my wife and my son, so I feel like I might be able to breathe through what would be tension. My mom (which is a whole other story and worry) is taking Alphabet Kid and myself to Disney World for 7 days. All the parks. A fancy resort. Dining reservations and dreams of cocktails and pure fun. We are all excited but I haven’t traveled with my mom since I was 16, so we will see how it goes. But, the boy and I both need this. And to be honest, I couldn’t afford to give him this experience despite the 50 hour work weeks. The last 18 months have been a different kind of rollercoaster and now we get to ride an actual one (or lots) together.
*note, little girl will take a similar trip with my mom when she is older and can handle the heat, the rides, the walking, and hold the memories.*
As much as he is a pain in my butt, and a constant worry, I can’t imagine any different. I will always do everything I can for him, provide him with resources, experiences and a safe spot to crush when he can’t function or cope. I can’t imagine my life without him and when I do, tears instantly fill my eyes and run down my cheeks. (literally just happened) I want, I need, him to feel safe and I just hope and pray that he makes it out on the other-side as a good person who doesn’t treat life like a punching bag.
I’ve also been thinking a lot lately about what his life would be like if I was no longer here to provide that security and unconditional love. I have no idea why I’m facing a philosophical crisis of my existence, but I know I can’t go anywhere because of him. Little girl would be fine, but he would not. So, that means that I get the medical tests done that have been looming over me for a year, I drink less, I walk more, and I take care of myself better. I am the classic case of everyone’s needs comes before my own, but not anymore. So, I guess that is why I am here. I need to purge the feelings and the toxic thoughts, the mom guilt and the fear. Release it from my head and my GI system.
Things can eat you from the inside.
I would prefer to take the first bite and see where it takes me.