JJ is 4 years old now. He’s noticing my deficits and is starting to make attempts to understand. I’ve feared this stage since my belly was round as I lay in inpat rehab. Kids are so full of questions; they turn everything over in their heads as if the subject their curiosity is aimed towards is tangible and can be held and examined from every angle. It’s frightening.
I’m glad he’s asking questions early because the answers will feel more normal to him as he gets older and the questions and answers become more complex. Skas knew me before the stroke. He remembers us running on the beach, taking walks around the block for fresh air, and me pulling out all of his Mega Blocs and using them to build hills and turns with the tracks from his Thomas the Train sets. JJ is not likely to have these memories with me even though he’s already inherited both the Mega Blocs and the train tracks. Because Skas was literally there from the morning I lost my left body, there was a wide range of questions being answered for him while everyone else was hearing the same answers. He met my therapists and doctors who talked to him while discussing surgeries and treatments. He was included, saw the struggles and could easily put together comparisons for answers on his own. Meanwhile, JJ was in my belly; or, up until now he really didn’t worry about much more than eating, sleeping, and toys that made noise.
Don’t misunderstand, I did and do things with JJ like a “normal” mother as often as possible because it’s just not smart to offer him no view than one that says I’m unable to be anything other than disabled. But the fact that I have a disability cannot go without acknowledging because it is an undeniable fact. I am limited in what I can do because of discomfort, pain, lethargy, fatigue and headaches. I have set up train tracks with him but my inability to sit on the hard floor for long periods of time means they aren’t usually set up in any unique or awe inspiring fashion. Once he gets excited and hyper, I get overwhelmed and a headache. A healthy 4 year-old will only color for so long before he’s completely bored. These things keep my bonding with him limited.
He has a level of understanding, however. He knows I can’t help him with games on his tablet because they require two working thumbs or when we go outside he can only run in the parking lot with daddy because mommy can’t run. Some of it hurts; like when he gets hurt I want to be the one he wants for not only a band aid but also comfort. Daddy can help him with both while carrying him into the house or to the counter or bathroom. All I can do is bring as much medical crap as I can carry with a heavy limp and one hand to him and hope he can walk after I’m done giving band aid covered boo-boo’s magic healing kisses. He’s already reaching a size where I sometimes lose my balance trying to help him stand.
Now we’re reaching a level of incomprehension because he is obviously becoming smarter and more inquisitive as well as thoughtless. What I mean by this is he knows I can’t help him when a toy breaks because that’s usually a two-handed job, but he’s seemingly stunned when he tries to put something in my left hand like a dirty dish and I don’t notice. This leads to a shift in attitude almost every time.
One of the reasons I feared this stage is because of my impatience and the frustration that creates in me. I’ve always been like this but as I grew I learned how to reign it in a bit. The stroke totally demolished what little control I had on that and as I began to calm down from the aftershock of having survived everything, I developed anxiety over these intense emotional reactions I felt I couldn’t control. I’m a lot better now that we’re 4.5 years post stroke but I knew that one day I was going to have a kid that will be curious about his mom’s deficits and want to know what’s up with that. I still have no idea if I have the patience for this.
Both my boys understand certain things about my deficit. They are not bothered by random punches to the face if we pass each other in a hall because it’s no longer surprising if my left fist decides to jut out on it’s own anymore. But, for some reason, I have little understanding of why they stop right in front of me knowing I’m walking behind them and simply do not have the ability to stop on a dime because they changed their mind about where they’re going. I yell and holler and expect both of them to know and remember everything going on with my body. I don’t even know what’s going on half the time.
When JJ attempts to communicate with my left hand, we both become upset. I have a lot of emotions to deal with each time: Anger, sadness, grief, remorse, bitterness. It’s never a “good” time for him to think I’m ignoring him by refusing to move my left hand for him. I have to help him understand, this includes answering questions like “why” asked 15 times before I finally yell at him that it just doesn’t work.
JJ is not the kind of kid you can sit down and explain things to. He’s easily distracted, has trouble maintaining eye contact and interrupts with something completely off topic. This type of child requires a patient parent. This type of child requires a parent that can be brief and verbally on point at all times. I am none of these things! This post is 1,000 words, I’ve been typing for 25 minutes… I am not one to be brief.
I don’t know how to explain to a four year-old that a knot in my brain broke open and bled just long enough to make my entire left side near useless. I’ve told him mommy had a booboo in her head and now her arm doesn’t like her; I’ve said that mommy’s head made her sick and her arm is still trying to get better. I’ve tried to make it fun by “throwing” my arm to show him that I can’t do anything with it or slapping my left leg as hard as possible to prove I can’t feel it. No matter what I do or say, it’s like he wants the real answer and I don’t know how to give it to him without scaring or confusing him. I don’t know how to give him these answers with patience because he’s only 4 years old and will have a lot more why’s to ask before he finally gets even a small piece of what I’m telling him.
I just don’t want him to not ask questions.