Thursday, January 17, 2013

Being a Mighty Mito Mom

Sometimes the hardest part of this disease is just what the title of my blog says, being a "mighty mito mom".  I very rarely feel mighty.  Hell, many times I don't even feel like much of a mom.

Being sick all the time is so difficult, as you may have already gathered from reading a multitude of other posts that discuss exactly that.  Just taking care of myself when I'm sick feels like climbing Mount Everest.  Then there's dealing with medications and doctors and caretakers and tests and, well, you get the point.  It's not easy.  Then, of course, there's the emotional side of it all.  There's the depression and sadness... the guilt... the anger.

Among dealing with all of this with my own life, I still have to take care of two other people in this world.  In fact, I have the weight of their entire world on my shoulders to deal with.  That's what it means to be a mom.  To be a mom, you have the responsibility of making sure you create strong, kind, responsible, non-selfish, smart,  honest, moral, self-confident, and happy people.  Their lives are almost completely in your hands.  As a mom, you are creating people.  We are, essentially, acting as the being many people call god.  No, I'm not calling myself god... take it easy.  I'm calling all moms gods. ;-) That's a lot of weight on a woman's shoulders!

Now, make that same woman someone who can barely care for herself.  That's me.

This is something I have been dealing with since I got sick.  However, as I have been more sick recently (or sick more often), it has been more difficult.  The hardest part is that I am unable to be the mom I really want to be.  There are certain rules that I want to enforce more, things I want to do with them more often (or at all), activities I want to participate in with them, and things I want to teach them.  All of which is a daily struggle.  Some days, of course, are more difficult than others.  When I am really sick and unable to get out of bed, I am not able to do anything with them.  Many times I am too sick to even enforce some of the rules.

I am lucky, in that I had 10+ years with my oldest daughter prior to getting sick to enforce the rules and teach my morals and standards.  At 14 she is a very intelligent, caring, and well behaved young lady. (Shhh... don't tell her I said that, because then she'll forget the part about also having a major attitude.)  I had plenty of years to give her my fullest attention, positive and negative.

My younger daughter, who is now 6 1/2, on the other hand, I worry about.  I am not able to be the parent I truly feel I need to be.  Therefore, I constantly worry about who she will grow up to be.  I have already had concerns recently about fits of anger that she displays on a regular basis.  If I was a better parent, would she act this way?  What will she be like as a teenager.. as an adult?  Are we causing her emotional problems because too much attention comes my way instead of hers?

It is so difficult to raise 2 daughters when struggling to take care of myself.  I feel guilty regularly for waving them off when I am too sick to do anything for them.  How am I supposed to raise two beautiful girls into two smart, honest, strong, kind, and responsible women if I can't even take care of myself on a day to day basis?

Mom... yes.  Mito mom... yes (unfortunately).  Mighty Mito Mom... not so much.
Maybe I need to eat some of this and it will solve all of my
mom problems.  Ha!


Anonymous said...

It is hard, I know. But you do your best and you give all you have and maybe that won't be enough but certainly you would give anything to be free of this illness and focus your energy on being the mom you want to be. I am in the process off being diagnosed with Mito. I have already been diagnosed with POTS and EDS. I have a none year old little girl with autism, who likely has Mito too. I am really going thru a lot of emotions right now and struggling. One thing I know though its I did not choose this and I would give anythingto be so many ways. I try to tell my daughter how much I love her and explain the illness do she understands. You are a mighty mom whether you feel it, whether you do all you want because you love your children, because you care, and you don't give up.


Robin said...


Thank you so much for your comment. Your words mean a lot. Especially coming from someone who's going through the same thing I am.
I'm sorry to hear about your struggles as well. The diagnosis process is NOT easy. If you need ANYTHING, please don't hesitate to email me. I'm happy to help in any way possible. I wish you luck in your endeavors...


Unknown said...

Robin, I am so find I am also a mom that is 39 that has mitochondrial myopathy encephalomyopathy disease. Have looked for a support group or other mito moms and not.found any until you. Hope.we can talk. I would like to find you on fb. Thanks feel better.

Unknown said...

Not sure if other message was recd would like to talk. Thanks.

Robin said...

Marcy -

I haven't heard from you so I thought I'd respond to your comment here. I'm more than happy to chat with you. If you click on my name it'll take you to my profile page where you can click "email" and send me an email. You will also find a link to my facebook page on the left side of my main blog page.


Unknown said...

Its a pleasure to meet you all.....look forward to chatting....maybe can help.each