The Guilt of Being a Spoonie Parent

In my previous post I briefly touched upon all the unprocessed anger and grief related to my life as a Spoonie, and the ways in which being chronically ill has impacted my life and broken my dreams. But the one emotion I’ve never managed to squash down and avoid is guilt. Perhaps this is because guilt is more of a blaming myself emotion whereas anger and grief are blaming something outside of myself. It’s easier to beat myself up when I’m feeling worthless, than it is to feel justified in wanting more.

I feel guilty about so many things these days including, but not limited to:

• my inability to work and the financial implications of that
• the burden I place upon my husband (who is also chronically ill) to care for me on my worst days
• how rarely I manage to do even the simplest tasks such as preparing a meal or washing the dishes
• how often I have to change or cancel plans at the last minute due to ill health
• how terrified I am of even making plans in the first place because of the point above

But the guilt I find the absolute hardest to bear is how much my ill health impacts my son. As a Spoonie Parent I have to constantly navigate the fine line between pushing myself to do something that needs to be done regardless of how I feel, and saying no to things I’d love to do because of how I feel. Parenting is pretty relentless, there are so many times when I push myself beyond my limits to meet the needs of my child. Which means that I often have to miss out on the fun things in order to rest or reserve my energy for the necessary things.

Just this morning, for instance, I had to let Little Man down by staying home as he and daddy head out for the day. Several times he tried to persuade me to go out with them, and when it became clear to him that I really wasn’t well enough to go out he tried to insist he should stay home as well because he was tired (he wasn’t, he just didn’t want to leave me at home alone whilst they went out). And for the briefest moment I truly considered trying to push through my symptoms so that I didn’t have to let him down, because the guilt felt overwhelming (as did the grief about not being able to enjoy a day out with my family).

But the reality is that had I gone out with them, they’d have had to considerably adapt their day as my symptoms increased. Because today I have woken up with my back in spasm yet again, despite taking muscle relaxants the past couple of days. I also feel sick to my stomach and I have stomach cramps. And the fatigue is wearing me down, even though I have been up less than two hours and have barely done a thing. I can barely function at home, so there is no way I could have gone out with them.

But no matter how reasonable my reasoning for staying home might be, the guilt is still huge. I don’t want to let my son down. I don’t want to miss out on a fun day out. And I certainly don’t want my husband to have to entertain our son all day and then come home to have to look after me. It’s not fair, but it is the reality of life as a Spoonie Parent. It’s the reality of my life, and it makes me unbelievably sad.  I know I shouldn’t be beating myself up about it, but I can’t help it. I look back at photos from when Little Man was younger, and it hurts me to see all the things we used to do together that we no longer can.

For the past 3 years, all the school holidays have been spent simply surviving. Little Man has Autism, and one of the ways that presents itself in his life is in a bundle of raw energy that needs to be channelled into something. Before I got sick I’d have planned days out, walks in the woods, play dates with friends, and even a games tournament at home. Nowadays we spend a large amount of time trying to find ways in which he can occupy himself whilst we rest, enjoying the tiniest snippets of time during our better moments doing things together, and then relying on family and friends to provide further entertainment for him. And it breaks my heart.

Don’t get me wrong, Little Man is generally a very contented little boy. Ask him how he feels at any given moment, and it’s usually happy. But I can see the disappointment in his eyes, hear it in his tone of voice, and sense it in his body language when I can’t do things with him because I’m too ill. He does his best to understand, caring for me in his own adorable ways, but he also has moments when he simply cannot understand and expects me to get better after a very short rest. Yesterday he even tried to “charge me up” by holding a cable to my leg as you would when charging a mobile phone or tablet computer, which was so sweet and funny that I couldn’t help but drag myself out of bed for a couple of levels of Plants Vs Zombies with him on the Xbox.

There is so much I feel proud of in my parenting of Little Man, such as the way I meet his emotional needs with the Autism and work with his school to get the right support in place for him there too. And I know that ultimately, despite how much I wish it weren’t this hard, he is learning huge amounts of compassion from a very young age. He is the sweetest, kindest, most caring boy you could ever hope to meet, and he is much loved by our whole community. I feel proud that despite everything we’ve been through over the past few years, we’ve created a home environment that has nurtured his individual needs and enabled him to bloom into the beautiful soul that he is.

And this is where things get really muddy in my emotions. I know I am a good mother. I’d go as far as to say I’m a bloody good mother. Which is why it hurts me so much to know that a) I am missing out on huge chunks of opportunities with my boy due to my health issues and b) I’m too ill to have a second child, consider fostering, or even just be the “cool parents” who are able to let their kid have tons of play dates and sleepovers, because they only have the one child’s needs to meet. I’m good at this parenting malarkey, I’ve always adored being around children (my mum became a childminder when I was 9), and my entire youth was spent dreaming of the day I could both work with kids and have my own.

I never imagined that my health would take such dramatic turn for the worse, effectively closing off so many doors to my dreams. But because it has, I have desperately chased different dreams over the past few years, trying to push aside the grief that was all too raw for me to feel. And I cannot help but wonder whether the choices I have made and the things I have done have directly contributed to how ill I am right now. Would I have been so sick had I not been so desperate to help other women avoid going through what I had and give new meaning to my life? Would I feel so guilty now if I hadn’t been so hell bent on fixing things in the past and instead just dealt with my emotions and embraced my life as it was? Did I waste the baby and toddler years, worrying about things I couldn’t change instead of just enjoying the years that flew by so quickly?

I don’t know what the answer is to any of these things. I imagine they are somewhere between a partial yes and a no, rather than a definite yes. But these are the things I think about on the hard days, when I have to package off my son into the care of somebody else, as I am too sick to go out and enjoy the school holidays with him. That boy adores me, and once he is home I know that we will enjoy all the little moments we have together completely and wholeheartedly. But right now? Right now, the guilt feels huge.