amber rahim

Chronic illness: the parts we don't talk about

One of those days

7 Comments

It’s actually my older daughter that has the chronic illness yet when my younger daughter gets sick I am filled with so much emotion, sometimes I am overcome.

My little toddler got a stomach bug and vomited all over herself in bed.  Quietly.  I didn’t hear a thing and she never cried or called out to me.  When I brought my eldest to bed I smelled it and saw her.  Lying silently, calmly, in bed, covered in smelly puke.  Her calmness was that really wrong kind of calm that means that your baby is really sick and is scared and … I don’t have words.  But if you are reading this blog, you probably know what I mean.

My heart broke.

All sorts of thoughts ran through my head.  How did I not know this had happened?  How sick is she?  What’s wrong with her?  A heat infused me, filling me up, pressure building …. and with practiced ease I capped it, put my feelings aside and gently spoke to her.  Told her I was going to clean her up and quickly grabbed new clothes, a towel, nappy and got the bath ready to wash her in.

When it comes to a vomit covered child, I know what I’m doing. Once you have picked them up, they don’t want you to put them down (and you don’t want to put them down either) and once you’ve picked them up, it’s really hard to grab clean clothes, towels, get the bath ready.

So why do I know what I’m doing?  Experience.

You see, my eldest has vomited almost every day of her life.  Nowadays it might only be once a day but it wasn’t always this good for her.

She has Bartters Syndrome, a genetic disorder of the kidneys that causes chronic and severe dehydration, with a risk of death in babies if not managed properly.  (check out this website for info about this illness: http://www.barttersite.org)

One of the side effects is vomiting and at its worst, she was vomiting 20 times a day.  Not just spit up, but projectile vomiting going across the room with the speed of a tennis champion’s first serve.  The mess didn’t bother me as I got very good at mess prevention: seeing the subtle signs of imminent puking and then grabbing the nearest cup, glass or container with one hand and turning her just enough so that the angle of projection would be just right…. and I could catch the vomit mid air.

What bothered me was finding my eldest daughter covered in puke in bed.  At night I had to sleep.  I couldn’t keep watch all night yet the littlest cough could trigger a bout of vomiting.  No matter how fast I jumped out of bed and sprinted to her, I didn’t always get there in time.  Most of the time I didn’t even wake up until I was by her bed and I would think “what am I doing here?”

Then I would look down and see this tiny tiny baby blinking away the puke from her eyes or holding them tightly shut if there was too much.  She looked surprised.  Still.  Almost holding her breath as if she was thinking “what happened?  I was sleeping and now this?”

So I would wipe her face, get everything I needed and start the careful process of washing and changing – all the while watchful for signs of more vomiting.  You know sod’s law right?  Guess how many times I had to start all over again before I had even finished getting her cleaned up.  Don’t know?  Well I don’t know either, I’ve lost count.

Why did I even start this story?  Oh yes, I’m having one of those days.

One of those days when the reality of my daughter’s life with a chronic illness weighs me down.  When I see with full clarity the vulnerability of both of my children, of all children.  It’s so real that I can almost touch it.

It’s one of those days when I acknowledge that this is my life too: to watch the suffering of another and I can’t fix it.  This in turn creates frustration and sorrow in me and I am overwhelmed by my own suffering.

It’s one of those days that I go through all this and finally remember this:

I may not be able to fix it, but I can offer comfort.  I can be with them, be present and loving.  I can look them in the eyes, touch their hand, be with them.

I can acknowledge their reality and honour them for living it.

Acknowledgements

Inspired by my daughters and published in honour of William.

7 thoughts on “One of those days

  1. Thank you Amber for this very deep and personal sharing; I cried in reading it remembering all your posts to our Big Bartters and Gitelmans group and through all you were going through you were reaching out to every parent; It was so inspiring; I am so glad you are blogging; This is written with so much heart and soul. I feel like I am right in that bedroom with you with the girls; I hope this can be shared somehow with the Bartters group; Your LOVE is incredible; your words so beautifully describing what those times were like; thank you thank you Sonja

  2. Hi Amber

    Touching story and deep respect on how you deal with these challenges in life!

  3. Hi Amber,

    I can understand what you must be feeling right now, as i suffer from a disease that weighs me down every day but still i manage to pick myself up somehow and face the world, but God forbid if i ever had to see my child suffer through even the most minor ailment, I dont know if i could’ve been even half as strong as you are in the face of this adversity. But i want to tell you that your whole family is there for you, and always praying for things to get better. You are a source of great inspiration for everyone. Dont ever feel alone or frustrated… and if there’s anything i can ever do for you, please let me know….

  4. Not many words just lots of love for you.. I miss you, your thoughts and your laughter. Looking forward to when we can catch up again but until then I will keep reading.. and nodding.. and smiling and then reading again xx

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