Parenting from the Sidelines

As I continue blogging I will post about my past experiences with motherhood, but for now I want to begin with what’s currently on my mind.

When my partner (at the time) and I discussed the possibility of children in the future, I told him that he would need to be mister mom. That as a quadriplegic I wouldn’t be able to do much of our child’s care. He of course agreed, but I’m pretty sure he didn’t have a clue what that was really going to entail, and neither did I. However, after that possibility became a reality, I somehow foolishly thought I would be able to do more, that maybe it wouldn’t be too bad. Stupidly, we hadn’t considered the toll it would take on our already strained relationship. Yes, I know all couples go through the same thing, but for us it was different. Our relationship was tough out of the gate. We loved each other. That was no question, but we were oil and water. Still are. Add to that the total lack of alone time due to care giving needs and then a new baby and well…I had never imagined I’d end up a quadriplegic and a single mom. As much as I had always wanted children even I was smart enough to know I couldn’t do it on my own and would never want to. Thankfully, I do have the support of my family and friends as well as my caregivers so I’m not really doing it alone per say but you get my drift.

As a mom you want to do everything for your child, be everything for your child. As a disabled parent that is not the reality of my situation. Not that it is for any “normal” person either. There are many things that I just can’t do. I can’t give my son a bath, can’t change his diapers, can’t tuck him in his bed and pat his back until he falls asleep, can’t dress him, can’t play with him to the extent that I would like, can’t help him learn to walk, can’t take him horseback riding, can’t keep him out of trouble when he’s getting into things.

I can give him a bottle and feed him to some extent. I can be up with him at night and comfort him when he’s sick. I can read to him and sing to him, but it’s those hands on things that I miss. It’s when he falls down and is crying his little eyes out and my caregiver gets to pick him up and cuddle him because I can’t that leaves me feeling the most useless. It’s when I watch others roughhouse outside with him knowing I never will. When they take him down the slide or dig in the garden with him, that’s when I feel less than. I know I shouldn’t, but my heart still clenches at the loss. Fifteen months old has been a hard stage for me. It was easier for me to do things with him when he was smaller. Now, he is almost thirty pounds, strong as an ox and just as stubborn. I have a hard time doing a lot with him because he’s so busy. In turn, I’m regulated to the sidelines, hence the title of this blog section.

So what do I do when I’m feeling like a failure as a mother? I embrace the small things I can do with him. I spend every day with him. I talk to him, cuddle and read to him when he’ll permit it. I try to watch every moment of fun he experiences with others. Be a part of it. I tell him how much joy he brings to all those around him and I hope that will make up for the things I can’t do for him…with him. I ask my caregivers to give me my son when he’s crying. This way I can still be the one he looks to for comfort. I stay involved in what’s happening to him. I watch his baths and decide what he eats. I give his bottles when I don’t have my hands full with something else. I have come to accept that the people in his life enrich it in different and important ways. He gets not just his biological family but pseudo aunts and grandmas, often with their own families in tow. It’s an asset to him to have so many love and dote on him. To have people doing his care that are fresh and rested, instead of tired, impatient parents. He is blessed.

To those of you reading this that are caregivers, try and be mindful of keeping the child-parent relationship strong. It’s easy to see a child you care for cry and just scoop them, up offering comfort instead of handing them to their parent. It’s easy to just make decisions, especially if you are a parent yourself, without asking what the disabled parent wants done. It’s easy to forget that the child isn’t your own. Easy to loose sight of the fact that though you may love caring for the child, the job itself is often fleeting, with high turn over. The one constant in the child’s life is the parent. It’s important not to inadvertently take on too much of the parental role. Love them well, but keep in mind that if you walk away for whatever reason, you will be leaving that little lift behind. It’s not just a job. You will be missed.

For those of you who are or will become parents living with a disability, do as much as you can within reason. We all walk that fine line of balancing the desire to do for ourselves regardless of the time it takes us. There are a ton of things I can do on my own, but what takes me a half hour can take my caregiver thirty seconds. You have to weigh the value of your independence verses living a fulfilling life. If I did a fraction of what I can do on my own, it would take me all day just to get out of bed, only to have to get right back in. What quality of life would that be? The same is true for parenting with a disability. You have to weigh the quality of activities you do with your child. Discard the more difficult and time consuming activities in favor of those more enriching to you both.

Having a child, no matter your physical or psychological ability is a balancing act. Many times I have to wait for what I need with my poor caregivers or mother running ragged to keep up with both Gabe and I. As a baby Gabe often has to wait when he shouldn’t have to. On the other hand I hope the experience will build a wealth of ingrained autonomy and patience that will serve him well throughout his life as he grows. Does suck? Yes. Is it worth the trade off for both parties? I hope so. From my view in the chair I’d say it is. So, if you have limitations and are contemplating becoming a parent you know what to do—weigh the potential downsides with the future benefits. Just remember not to limit yours and your future child’s potential. If I can manage, I’m sure you can to (note: I’m not advocating for every idiot to have kids. Careful consideration should be applied).