This one isn’t going to be easy to write. I know, because I’ve set down and tried multiple times over the last few weeks. For years now I’ve taken pride in my ability to make the best out of the worst. No crying, no complaining and minimal begging for help. These days, though, I find myself doing all three, often simultaneously. Why? Because sometimes, our lives are beyond difficult. Life with Avery is anything but easy, and his behavior lately has only exacerbated an already growing problem. I don’t want sympathy, or even help. In fact, I don’t want anything except to get these feelings out. I’ve never had a problem expressing myself through words but writing this, which amounts to little more than complaining about life with my son…isn’t easy. So, here goes.
Avery cries for about an hour when he wakes up. Every day. When he wakes up he can’t walk and has to stretch his legs to get them to work. His muscles are tight and if he stands up he falls right over. He generally stops crying right before we have to leave for school and is fine once he goes into the classroom. He’s there for five hours before I pick him up for therapy three days a week. Cue another bout of crying because his nap is interrupted. Sometimes he will calm down when he gets to therapy because it’s the thing he enjoys most. Other times he doesn’t. When this happens it usually results in him crying on the floor, kicking for 10-20 minutes. Meanwhile his therapists are down there with him, cajoling and attempting to placate him. So I just stand there. Embarrassed. Humiliated. Ashamed. Feeling like a failure with an uncontrollable child. You’re probably thinking: he needs discipline. Yes, he certainly does. But what?
Am I supposed to hit a disabled child? He lives with chronic pain. Do I inflict more? It’s a constant struggle of “what do I do” vs “what is appropriate for him?” We’ve tried time out. Taking toys away. Taking TV away. No YouTube. No sweets. And, yes, spanking. With every attempt he’s remained defiant and becomes even more impossible to control. Discipline for Avery has been a complete defeat. Days like today have become normal- me sitting in the therapy lobby with red, puffy eyes from crying because he once again showed his rear. They tell me: we’ve seen worse, don’t be embarrassed. But how? How do I not see his insolence as a personal failure?
He struggles so much. I know it has to be frustrating. His peers can dress themselves, feed themselves, walk up stairs. He can’t. He can’t use his left arm at all. Imagine going through your day using only one hand. Having another one but it just won’t freaking work. That’s his life. I can’t imagine how it feels to be a child on the verge of realizing that they are different from everyone else. In my heart, this is what I fear is happening. I’m so scared that he’s acting out because of the many things he’s finding out are so much harder for him. I’m even more frightened because I can’t fix it. There is literally nothing that we can do except love and help him.
In many ways, Avery is still a baby. He still has to drink from a cup, be changed, dressed, cleaned, fed. We’ve had an infant for over four years. Sure, he does have some independence because he plays alone and spends time with Abby. But I’m tired. Running here, running there…so many therapies and appointments. Drop him off, pick him up. It’s all necessary to ensure that he always has the best chance of success. Of this, I can’t complain. I’m only thankful that it is available to us and that despite his behavior these people continue to love and nurture him.
The fact is, there’s more that scares me. I’ve done my fair share of research and I’ve read nearly everything I can on prematurity. So I knew…I knew 4 years ago…about the link between prematurity and ADHD. Extreme prematurity- between weeks 23 and 28- puts babies at the greatest risk of developing ADHD. Some research has indicated that the risk for these babies is greater than 60%. I see it beginning. I know the warning signs. And I’m scared. Not because that diagnosis is some terrible, formidable thing. But because it’s a lot to add to an already extensive list.
I know what you may be thinking. He’s so cute! How can he be bad? There’s no way! For a while, it was funny. I’d laugh with people when they said it. Now, I struggle with him so much that hearing it angers me because it just shames US. Makes Arick and I feel like not only are we inaccurately vilifying Avery but that we shouldn’t even say anything to begin with. When your every day is a struggle, that’s the last shit you want to hear. Frankly, he listens and understand now. Your “he’s not bad” is entirely less effective than an “Avery, you should try harder to be nice/not cry/not hit” would be. Because we aren’t lying. He’s bad. He throws tantrums and hits and breaks things- like TVs. These are facts. But he IS also cute. And sweet. And so damn smart. It’s a balancing act. It’s what kind of day we are having.
With that said, I love this little boy more than life itself. All three of us spend every day doing for him so that he is all that he can be. I’ll continue doing just that, even on the hard days. Even on days like today when my nose is still running from crying and I feel like a failure. Because later on, at home, Avery is going to crawl up in my lap and hug me. He’ll snuggle his head into my chest and say “I sorry, Mommy.” And I’ll know that he is. I’ll accept it and tell him that making up for the wrongs you do is necessary and the most important step towards gaining forgiveness. If I didn’t teach him that, THEN I’d be a failure. And I’m not failing. I’m learning. Just like he is.
This goes out to all the Mommas who are struggling to hold it together right now. The ones who haven’t had time to shower in days, who eat their kids leftovers instead of making a meal and don’t sleep at night. I see you. I am you. I know how hard you work. It isn’t going unnoticed. You’re an amazing mom and you should hear that more often!