Friday, May 16, 2014

Mothering with Chronic Illness

Well, obviously I haven't been up for writing recently. Actually, that's not accurate. I have felt like writing, but have used my spoons on other things instead... like taking care of my girls, attending soccer games, etc.

I have a friend who lives with mito while also taking care of her daughter, who has mito.  On Mother's Day she sent this to myself and a few other mito moms (which means we're either suffering from mito while raising our kids or a mother of a child with mito... sometimes both).  I wanted to share it because it was so beautifully true.  While reading it I felt like she was taking the words right out of my mouth.  So, instead of saying some of the same things on a blog post, I will give credit where credit's due.

Angelique Surguy-Hershey wrote:

You are amazing, beautiful women who struggle every day raising growing children while you are chronically ill (and some of you while your child(ren) are ill too). You know how hard motherhood is more than anyone. You know how amazing it is. You may feel guilty sometimes because you can't do what you thought you'd be able to as a mom at times. You work twice (or more) as hard as other moms and often feel like you come up short. You feel horrible with a plethora of symptoms. You may be in and out of the hospital. You often push on because you are a mom first and sick second. You sometimes fear you may not live to see your child(ren) grow up and worry will they be taken care of. This is a reality thankfully a lot of moms don't understand. Despite how hard it is, despite how your health sometimes suffers, despite your fears, you would never change it. You love your child(ren). You are a beautiful angel! You are amazing! You do remarkable things! Don't ever doubt that! You are as much a gift to your children as they are to you! I am blessed to know so many Super Spoonie Moms. Enjoy this day honoring you because you deserve it more than anyone.
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She is a sweet person, a good support, and great with words... like me, of course (the great with words part).  She hit the nail on the head.  Being a mom is one of the hardest jobs, as all of us moms already know. When you add chronic illness, it is extremely difficult.

Those of us with a severe chronic illness are unable to hold a job because of it.  However, motherhood is our constant job, 24/7, sick or not.  Most people call in sick to work when they have a cold.  Motherhood doesn't allow sick days, no matter how sick you are. We have to work no matter how horrible we feel, and a cold doesn't hold a candle to Mitochondrial disease. We push through the pain, fatigue, nausea, muscle weakness, and many other symptoms to make sure our kids are taken care of.  Why?  Because we love our children more than anything else in this world.

We live with constant guilt.  For the most part I am okay with the things that I'm missing out on (running, working, etc.), but of course we all have our days.  What I can't deal with, however, is saying "no" to my beautiful daughters all the time.  My 7 year old doesn't understand.  My 15 year old understands, which helps, but she also remembers what I was like before mito took so many things from us.  Sometimes it's even the little things that induce guilt, like not being able to fix their sack lunch or help put p.j.s on at the end of the day.

We worry that we won't be around for our daughter's wedding or our son's graduation.  Moms without mito or other progressive disease don't have that in the back of their minds everyday.  As we say "no" when our kids ask us if we will play outside, it's not just guilt that we experience.  We also think, "Should I just try to do it and make myself more sick because who knows how much time I'll have?"

To my friends raising a sick child while you're sick also, I praise you.  I praise you. I praise you.  You are my heroes.  I don't know how you do it everyday.  I can barely take care of my kids and they're healthy. One of my dear friends has 3 adorable little boys.  Two of them have mito and the third has some other problem(s). She is taking care of all three without the help of their dad because they're divorcing and he lives out of state. AND... if that wasn't enough... she has mitochondrial disease too.  I look up to her every single day.  She's an amazing mother.

If you are sick and you're taking care of your children who're also sick, IMMEDIATELY after reading this, go treat yourself to something. Examples: Massage, some time alone, coffee with a friend, a nap, a bowl of ice cream, a carton of ice cream, etc.  I am fully aware that you can't just stop what you're doing and go get a massage, but PLEASE do something for yourself, ASAP.

If you're a healthy mother of a sick child(ren) and you haven't done something for yourself recently, do it!  Bare minimum, go eat some ice cream and watch a movie or, better yet, go for a run.

If you're a healthy mother, with healthy kids, give yourself a huge pat on the back and hug your kids.

Happy Belated Mother's Day to all the mothers I know.

1 comment:

Ann Latos said...

Thanks for sharing. I appreciate your perspective.