The loneliness in being a single parent to a special needs child

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Not so long ago, I wrote a piece about being a friend to “one of us”…you know, the parent of a child who has a life-limiting illness or a special need. As I mentioned there, it isn’t always easy having us as a friend. But, we are worth it! And as they say, all things worth while take some work. So, there are some things that we want our family and friends to understand about us, and especially those of us that are single parents.

We REALLY NEED you to hear this. Not just want you to hear. We need you to hear.

We are often lonely. And not just the kind of lonely one feels when they are in the house alone while the kids are at school and you find yourself not knowing what to do with your time. That’s not it. You see, we are alone. Really alone. No partner to lean on. No partner to share the weight of this often exhausting journey. Many of us don’t work outside the home because it’s impossible to keep a job when you have no spouse or family or a special needs daycare to rely on. That means we may not have talked to another adult in a day or two, and that can leave us feeling very removed from the world. And then when our long day is done and we go to bed, we don’t have the comfort of hearing our partner even breathing in and out in that reassuring way that says “I’m right next to you. Always.” Instead, when we go to bed, we hear the sound of the baby monitor that is telling us if our child, who is likely well beyond the age of a baby, is gagging or coughing or crying or having a seizure or if one of the alarms on the medical equipment is sounding. And in that moment as we lay in bed alone with the grey noise of the monitor at our bedside, we wonder will there one day be someone who could want to share this grey noise with me? And sleep takes hold…until across the monitor a noise comes to tell us sleep won’t be ours just yet.

We don’t get out much…if at all. Many of us have single friends, even friends who are single parents. They can usually find someone to mind their child without any problems and out on the town for a night of fun with friends they go. And when they do, they can even have a drink or two too many if they want because the kids are safe at home being minded. Insert “one of us” into this scenario. There isn’t anyone we can just ring and ask to mind our child with a life-limiting condition at the drop of a hat. Correction: there isn’t usually anyone we can ring to mind that child even with a month’s notice because that person usually must be a nurse. If it’s not covered by insurance of some form, that’s an expensive proposition, especially for the single parent. But say we get out…miracles do happen once in awhile…and the drinks are being served. Tempting! After all, we are stressed up to our eyeballs and the release would be great! But, no. We can’t. In the back of our mind we know that our mobile could ring any moment saying our child is having a seizure or our child is vomiting all his feeds again or…you name it. So what do we do? Side with reason, usually. And back to feeling like a social outcast we go.

We often use social media to connect. Yeah, that often dreaded, annoying tool of modern society that is social media. Remember, we are alone, lonely, and not getting out much if at all. So, here sits the laptop and that means friends at our fingertips! And while social media is often annoying, for us it is a real blessing. We get to chat with other parents like us…”one of us”…and it brings a semblance of normality to the way we live.

So, friends, this is what we really need you to hear: We need those of you who are not “one of us” as well. We need that semblance of normality! And we need you to not ignore us when we do give a good rant on facebook about feeding pumps or seizures or IEP meetings, or when we tell the world on social media how depressed or how lonely we are feeling (because, we ARE feeling that way. We really are not just seeking attention. We are seeking the comfort of friends). This is precisely when we need you to check in on us, to see if we are ok, to ask if we need to talk. We use this tool to reach out to you because frankly it’s often the only one we have…or, sometimes it’s the only way we feel safe expressing our feelings and needs so we don’t run the risk that our hope for friendship and connection will be rejected actually face to face. But we do need that face to face time. We do need friends to just drop in and check on us.

Let us know we aren’t as alone as we feel.

PS: please don’t forget to bring the chocolate and the wine.

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2 thoughts on “The loneliness in being a single parent to a special needs child

  1. Reading your blog tonight has touched my heart and soul in a way I didn’t expect. My almost three year old has autism and a seizure disorder and I also have a typical 5 year old daughter. You are so strong and your children are so blessed to have you! Thank you for sharing your story.

    Like

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