Years ago while at the pediatrician, the doctor asked how Gage was doing. The doc hadn’t seen him in a while, or at the time, until before he’d started dialysis. She knew us well, had taken a special interest in us while at the practice (she was also the reason we left the practice) because of the kids’ extra care and in particular had been a good sounding board regarding Gage’s behavior issues with each passing annual appointment. It’s why I used to wait weeks to get an appointment with her specifically.
On this day she asked how he was doing and I said, of course, we’d had our challenges, as always. I said “He’s just hard.” I then added quickly, “I’m glad he’s alive though, so I feel guilty complaining.” I mentioned we still saw the behaviorist and that it is usually two steps forward with one thing and one step back with another at the time.
She asked me if it is hard for me, as his mother, to deal with what issues Gage had and how they impact others issues. She asked if it was hard to never know which issue impacted what.
Yes. It always is. I am certain even without a chronic condition, mental health issues or vision issues that probably Gage would have been a “difficult child” or a “strong-willed” child anyway, but who knows how differently he might have coped had he not had to deal with having ARPKD and OMA. I know with certainty that OMA, having affected his development causing universal delays, added to his frustrations as a child and changed his personality. Cognitively he is at his age, but he struggles educationally and I think that feeds his frustration. Luckily, we’re able to have him in a small private school for kids who learn differently and he’s excelling in their environment with modifications to fit his style and small classroom sizes.
Being a mom to a child with special needs, and in particular a behaviorally challenged one, can wreak havoc on your confidence as a parent. Over time, I’m happy to say, my confidence as his parent is better because I’m better at parenting during the challenging times. It’s just better now.
Why are things better? I know what I didn’t know. It’s also time for sure. Maturity, most likely. Play therapy for him, counseling for me and a behaviorist at our beck and call between his ages five and ten. His coping skills are better and getting better still with age and as his parents, we’re getting better at navigating triggers that cause behavior issues, that can almost always trace back to a sometimes free-flowing anxiety. We’re also better parents in the moment. There were a lot of times I didn’t think I could be the parent who could help a kid navigate severe anxiety, suicide talk or a failing body. I didn’t think I had it in me.
I suppose it is always difficult in some form with either or both kids because of their issues, but that is part of what we know as normal now. As time, maturity, and coping skills continue to progress in the right direction, so does my parenting. Fifteen years into it, I can honestly tell parents that in those moments when you don’t think you can do it – meaning, be the parent your kid needs – you can. You will. I wish I could go back and comfort that mother who is weeping on her dirty kitchen floor after her son finally fell asleep after a particularly bad day of him wanting to die. If I could go back and tell her something, it was that she is enough. I am enough.
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