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Why I'm Not Always a Good Friend as the Mom of an Ill Child

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So today I sit here and try to work out why I am a rubbish friend, neighbor, active-in-school parent, daughter, etc.

I mean, I don’t mean to be all these things.

Last week I had a “reflect upon my life” moment. I thought of an old friend and I suddenly felt terrible. This is someone I care for deeply and someone who I think I’ve let down.

It then came to me that this is just one feeling of guilt I have in a long line. The thing I’m guilty of is nothing terrible, it’s just something I should have been doing to help her but didn’t. And looking back now, I can’t say or explain exactly why.

I don’t know why I forgot that old Aunt Flo had a hospital check up last Tuesday. And I can’t begin to remember exactly why I’ve cancelled so many coffee dates and nights out with friends over the years.

All I know is that I’m a serial canceler of everything.

The truth is though I don’t want to be any of these things.

The truth is I cannot cope with extracurricular anything.

I get up every morning on edge. I’m worried about how my daughter Molly will be and what the day will bring.

The washing still needs doing, though, and the other children have to be cared for and taken to school happy. The pets still need feeding and cleaning. The cooking needs to be done. Someone has to do the shopping. Our situation with Molly being so frequently ill means I have never been able to earn a decent income. My husband is earning solo for the six of us.

I spend any spare time I have (usually when I can’t sleep) thinking of ways to change things about Molly’s condition that are wrong. And I put a lot of effort in to supporting people who are as frustrated as me with this disease.

I read and research everything I can to try and find a way to make Molly better and get her the treatments she needs and to raise awareness to her condition.

I do the occasional artwork, but that is also for others. I don’t care much if I don’t go to the spa. I’m not a selfish person. I haven’t been to the hairdressers since 1996. My mascara costs £1.99 from Boots and I do nothing beauty or otherwise for myself. (Except buying shoes. I love shoes).

That doesn’t bother me, though, because I’m happy! My kids are happy, my husband is happy and we all laugh a lot.

So I wonder if people realize I’m just scraping by, juggling all this necessary run-of-the-mill “normal” stuff?

Anything extra to this normal stuff generally spins my brain and I find it difficult to fit in. And that’s because when you have a poorly child, there are not enough hours in the day.

Today I have had to almost carry her to the toilet. She is in chronic pain. This pain thing alone fries my brain, leaving any “normal” things to do on top of this a scrambled confusion. She has a pain relief band; we change sites with it on her body when the pain gets too much, and even that takes a while.

rachel pegler and her daughter Molly
Rachel and Molly.

She has a strict life-dependable medication schedule. She has a physiotherapist. Molly is always in pain afterwards. And then there’s the daily injection. Molly’s also starting a new health therapy weekly to combat the pain of the physio. We are also seeking to have hypobaric oxygen therapy. This will take another two days out of our week. This is without special dental treatment she receives. And don’t get me started on the hospital appointments all around the country.

This is all when she is well (Well… “well” by her standards).

When she’s poorly you can include daily the chest physiotherapy. The autogenic drainage therapy. The oxygen checks, the blood pressure checks, the nebulizers and extra asthma medication.

I’m not moaning about all this — it’s just our way of life, and believe it or not we are the happiest family I know.

All I’m saying is although I can’t exactly remember on that particular day why I was late or I cancelled, or why I didn’t do something I said I would, you can bet your bananas it’s something to do with all of the above.

This has been my life for 17 years. I’ll do anything to make her better and so will remain a little bit crap at everything else until that happens. I can only apologize because I do feel guilty every day for the people I let down. But just please know I don’t mean to be this way — it’s just the way parents with ill kids survive.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

Originally published: May 18, 2016
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