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Young, Sick and Invisible

My illness has shaped me,
But it does not define me.

An Open Letter To A Baby That May Never Be

Black and White pregnant photo

Just a few years ago you are all I could ever dream about: a house, a husband, a place to call my own, pets, maybe even a car, but you – you would have been the cherry on the top. You are the missing piece that would have completed the puzzle, but that’s all you ever may be. A dream. I never knew I would be parenting with chronic illness. The sicker I have become, the blurrier the picture of you gets. My energy levels are non-existent, napping desires increasing by the minute and that’s all before you even exist. Even for someone incredibly healthy, you can jolt their mood, disfigure their body and leave them empty inside. How am I to do it ?

Parenting With Chronic Illness Seems Impossible

I’m not healthy enough to take care of myself, remember when to take my medication, or even have enough drive for self-care. How am I supposed to care for you when my needs have long been lost? I know there are people out there with chronic illnesses who are sicker than me and do their absolute best to give you a wonderful life. I salute those people. They are special, strong and gifted. I just don’t think I am one of those

Chronic Illness Can Be Passed Down from Parents

I was eighteen when I first found out I was chronically ill. Nineteen added to the list of diagnosis and don’t get me started on twenty. But none of that matters, none, none at all. What matters is that there is a high chance I could pass it all onto you, all of it. I suffer, and I know I do. I put on a brave face, say ‘I’m fine’ and carry on as normal. But you, I would see through your smile. I would see the despair in your eyes, the pain in your speech and the fatigue in your walk. How could I put you through that?

Yes, there is a chance you could grow up completely fine, have nothing the matter. You could be a normal child, grow into a healthy teenager, live a spectacular life and one day have a family of your own. I would give anything to be able to see you happy, to watch you grow old, to make mistakes and learn from them, but most importantly to watch you smile.

Parenting With Chronic Illness is a Risk

Do I take that risk ? Risk your health for the sake of my happiness ..? Now I know I am only young, and you wouldn’t even come into question until years from now. I learned from my mum that nothing should be taken for granted, just as she has learned.

My mum said “As a parent we want to protect our children. I don’t want my daughter to be ill. I don’t want her to be in pain. I want her to live a ‘normal’ life. I don’t want to see her upset but all this is ringing true, it’s really hard watching her cope with every day tasks we take for granted, even if she is adapting really well. My one true wish is to see her happy. I hope and pray that her life gets easier and symptoms that she has start to disappear and she can start doing other things that she enjoys without constant worry of a flare up. I’m also hoping she will get the answers she needs. It’s a daily battle, but some answers and remedies is what we need right now.”

Parenting With Chronic Illness is Dual Suffering

My Mother may not be chronically ill, but she has learned, just as I have, that we do not suffer alone. Your family, friends, those closest to you also feel your pain. No they won’t feel it to the same extent as we do, but they know you, they know when you’re faking it. Just as I see their pain, I see my mother’s hurt when she sees me. I see my sister’s agony when she looks at me. How am I supposed to live looking at you, seeing either you in pain or witnessing you see my pain? That is no quality of life. That is nothing.

I am sorry. I truly am. You are all I have ever really wanted: something to call my own, to see you grow up, to be ‘normal’ (whatever ‘normal’ is). I just wanted to have a ‘normal’ family. Like most do. But, nothing about those who are chronically ill is normal. I would not dream of subjecting you to a life like mine. And that is why I am sorry: because you may never come to be. Just a dream.That is all you ever may be.

Until next time,

Bethany S.

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