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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.

Parenting – Are These The “Happiest Days of Your Life”?

The other day I wrote a blog post about feeling guilty as a wife, mother and friend. It got quite a varied response, with one friend telling me she felt exactly the same a lot of the time and then a different friend asking me why I was letting so much guilt in when this should be the “happiest time of your life”.

At first my response was that these past two years have been the most stressful of my life in many, many ways. I suffered from Hyperemesis Gravidarum during pregnancy, then I started having problems with nausea and then Endo pains pretty soon after having Little Man, and  now my husband has just been told that he most likely has small fibre neuropathy. That’s a lot of health issues to cope with when you have a young child taking up so much of your time and energy!

But it struck me as interesting that within my group of friends there was such a wide gap between the one who told me that she too struggled with guilt and the one who told me that this guilt was unhealthy and that my focus was all wrong. I have a lovely husband and a beautiful son, how could I be letting guilt ruin what should be the happiest time of my life? It seems especially important to ask this when I spent many years of my life looking forward to this exact moment. Am I simply ungrateful for what I have, or did I completely underestimate how hard this would all be?

I wanted to see what other parents thought to this, so I asked a few other bloggers  for their thoughts. Here are their responses:

“I’m with you on this one. I can now see that I had no idea what it was like to be a parent until I had my own children. One minute it can be utter bliss and then in an instant everything can be total s**t (literally). Parenting is constant, I’d like to meet anyone who can be happy every minute of the day when they are always on duty!! I just look forward to the days when my friends have children and I shall just smile knowingly to myself.” – Ginger Bisquite

“Parenting is like a roller coaster, looking on at the people screaming and arms in the air it looks like loads of fun, but when you’re on it there’s the mixed feeling of nerves, elations and slight terror as you navigate the track. No one can fully understand how it feels until you’re on the ride. And it’s a ride you can’t get off. There are always going to be moments that are overwhelming and you can burst into tears in the street and there can be times where your heart is so full full of love it feels like a dream. The one thing it most definitely is? Hard work, a relationship that is constantly challenging you. To all the mums out there I take my hat off to you.” – Wild & Grizzly

“To me, this kind of response just adds something else to feel guilty about – not enjoying every moment! I regularly feel as though I’m the only who isn’t enjoying every moment and that there must be something wrong with me! Reality is that parenting is blummin’ hard work. FACT!” – 3 Children and It

“To me, the happiest time in my life doesn’t exist anyway. I find life mostly hard work and stress with the odd good day, you know, every decade or so …..”

“I get so angry at those type of comments (enjoy it, they won’t be like this forever etc.) – some days I can’t wait for my boys to be old enough to blow their own noses and be left alone for 20 minutes without risk of them destroying the house, or each other! Parenthood is a rollercoaster (and at times, bloody hard work, especially with pre-schoolers). This myth of it being permanently wonderful isn’t helping anyone…” – Hodge Podge Craft

*edited – in respone to Hodge Podge’s comment* “I find those things are a reminder for me when the kids do tire me out and I feel like I have no energy, am too stressed etc. I do feel like I will miss this stage once it is over and it helps me to remind myself of that at times when it feels challenging. As for happiest times of your life, I think that’s probably way too broad and way too individual for anyone to make these kind of sweeping statements.” – In The Playroom

“I keep having these thoughts. I know it is a blessing to have my little one, and I am eternally grateful for it, but we are humans too. We are allowed our mood-swings and meltdowns. I have written about this here” – Rambling Through Parenthood

Reading these comments back, I am reminded that parenting is hard work and that’s a fact! And yet we put all this pressure on ourselves to have the most perfect life ever.

We see, hear and read about people “having it all”. We believe we should be able to do all these things and still have time and energy to spare, but that is just nuts. So often the only things we share are the good bits, the bits which we want people to see. We hide the exhaustion, frustration and anger we feel because it doesn’t seem right to share these. Everybody else seems to have it all under control, and so we feel bad about the fact that we don’t. What is wrong with us? Why can’t we be like everybody else?

But the truth is everybody has these moments in life when it all gets too much. And by hiding this we make it harder for ourselves and others to ever admit that. We get caught up in trying to keep up with an impossible ideal and it is that which leads us down the path of guilt.

When I first received the comment about this being the happiest time of my life I reacted strongly… with guilt, go figure! But why should I? This is where my thinking is all wrong… these past few years have been the most challenging but they have been brightened by the wonderful parts of being a parent. However, when I fall into the trap of believing my life isn’t perfect without being able to do and be everything I want to be (or feel I need to be) I lose that balance entirely.

With that in mind I am making a few changes around here. The things I feel guilty about are the things my heart yearns for the most. Guilt can be  a very helpful emotion so long as you use it as an indicator to what is wrong, rather than believing there is nothing you can do about it. I am choosing to use it as a measure of what needs to change in my life.

These days may be the happiest of my life, but they are also some of the most stressful – and that’s okay!

Feeling Guilty – as a mother, a wife, and a friend

I hadn’t planned on writing so much about how I am struggling right now, but it seems as if writing about these things is more important than I realised.

This past week I have written two posts about my health and each one has received over 200 hits – my blog never receives that much interest in one day, let alone twice in one week! And this has given me the confidence to know that it’s okay to use this space to share how I’m feeling. And right now, sharing how I am feeling is so important because I need to let it out somewhere or I might explode.

So let’s start with guilt.

It’s not a pleasant feeling is it? It’s certainly not very helpful at times. But it is very, very invasive and creeps up on you at the worst possible moments, doesn’t it?

This past week I have really struggled with my physical health, and my emotional and mental health has suffered too. I have felt guilty over pretty much everything that has happened.

I’ve felt guilty for snapping at Little Man when he has jumped on me or dragged me off the sofa when I’ve been feeling really poorly.

I’ve felt guilty for not being able to remain strong and clear headed when TJ was changing meds and feeling out of sorts himself

And I’ve felt guilty for having to miss yet another friend’s birthday because right now it feels like all I am ever doing is saying, “no, I’m sorry, I just can’t make it.”

I felt guilty for not taking Little Man to toddler group because I felt so poorly.

I felt guilty for not cooking nutritious meals from scratch and making my family eat easy, convenience food.

And I felt guilty for missing my brother-in-law’s birthday because it completely slipped my mind.

Quite frankly, I feel guilty as a mother, I feel guilty as a wife, and I feel guilty as a friend. In each of these roles I am falling short because I am feeling so ill I just cannot give what I want to each one.

And that’s hard for me to take.

I was talking to a friend this morning about the way forward and whether I should be considering more drastic action to deal with my symptoms and I realised just how much this is taking over my life. A year ago it was bad, now it is unbearable.

I find myself in a familiar place, except last time I was here I wasn’t a mother and I remember very clearly saying to TJ that I didn’t know if I would ever be well enough to have children and maybe we weren’t meant to be parents.

And I feel immensely guilty about that! I have the most beautiful son, who is the light of my life, and I cannot give him what he deserves because I am so ill. And that breaks my heart.

The past two years have been spent coming to terms with the fact that we cannot have another child… and yet suddenly that means nothing. Right now my focus is on what I need to do to be well enough to give the child I have the best of me.

Don’t get me wrong – my son is loved, he is cared for, he is thriving in all areas. I am not failing him in any way other than the fact that I want to do more. I want to be well enough to plan activities and trips away to see family and friends, and actually be able to do them. Right now I just cannot do more than what I have to do. I can feed him, clean him, clothe him, play with him, read to him, teach him and love him… but at the end of all that I am so exhausted I don’t know how to recover.

And there are so many things I want to give him. So many things I want to give my husband. And so many things I want to give myself. I want to complete the HG book. I want to devote as much of my career to changing things for other women, so that they never have to feel these emotions. And I want to have a life where my health doesn’t dictate what I can and can’t do. Where we can invite Little Man’s cousins and friends to stay or we can plan a holiday of our own without thinking “will I be well enough to do this?”

And right now I know roughly what I need to do to get there, but the path is a scary one. It means considering more invasive surgery than I have ever considered and that terrifies me. But I think I’m at the point where I no longer want to live like this – I want to see what life is like without it hanging over me.

I’ve spent more years of my life controlled by my health than I have without these health issues, and that is a fact I want to change sooner rather than later.

And hopefully that will stop the guilt too…