"Miracle"~Celine Dion

So today's blog goes along with a post on the MdDS group post that was started.  How to raise a child with having this syndrome.   

When I was first diagnosed (and still on my bad days), I wonder..."How in the world am I going to raise my kids?"  "How am I going to take care of them, when I can't take care of myself?"  

As a mom, this has been so difficult for me.  Maybe one of the most difficult things to try to succeed through all of this.  Being a parent is a hard enough, but to be dizzy, nauseated, and constantly in motion makes in so much worse.  You have days where getting out of bed to even go to the bathroom is an extremely hard task.  I am fortunate, I guess you could say, that I have a 7 year old and a 4 year old, so they can help themselves for the most part.  But, and its a huge BUT, its not the same.  Its hard to sit, literally, and watch your children grow and you not to be a part of the actual activities of it all.  And for those parents whose kids are really young, more power to you!  I really don't know how you work that out!

A mom today wrote that she signed up to go on a Girl Scout camping trip with her little daughter.  Its a long trip, and her symptoms are extreme.  She is dreading the trip and thinking about not even going.  Your children don't fully understand that you have these limitations.  I know how that mom feels.  All the fun summer things to do, going to the zoo, Busch Gardens, movies, etc. They are daunting tasks.  My kids love to go out and just run, but when I'm home by myself, my fears are so high that something might happen that I don't let them out.  This isn't fair to them, but with this you can't just jump up and run help them.  Even in the house you have this fear, but at least its a smaller space. (Not so far to run).  

Cooking for your kids is miserable because you can't even cook for yourself.  You end up with microwave meals that aren't healthy or having people bring you fast food.  Granted, yes, your kids are eating, but not food that is good for them.  I've gotten better w/ the cooking but I know there are some parents out there who can't even step foot into their kitchens.    

As a parent, your child is first in your life.  Its the way that it goes, but its so hard not to let MdDS take over and become first.  Your kid(s) suffer.  Mine have.  I can't work anymore, so my husband works more.  Nowadays my kids barely see their dad because of this.  They have a mom who is trying everyday to fight this, and some battles I'm winning, who is irritable more than not, and who just plan feels miserable some days to where even them running around in the house becomes too much.  The disappointed looks is heart/gut wrenching especially cause its not a "Because I said NO!" moment its a "I'm so sorry, I CAN'T" moment.  They try to understand but they are only 4 & 7.

Now my kids have started learning things that help me out, and they are coming up with their own fun.  My son even stops what he's doing to hold my hand or even just come check on me.  Lily has become a snuggle bug on my bad days.  We catch up on "Good Luck Charlie" or "Doc McStuffins" and if we are really frisky we watch back-to-back Princess movies (tiara's included).  But some days even watching those with her is draining.  

I love my kids.  They have been such a big support.  I've learned to become a different type of mom.  I'm adjusting and so are they, but it definitely doesn't make the process easier.  I'm not the mom I used to be, the mom I used to love being.  This new mom is taking some getting used for all parties involved.  I always said I wanted to be a stay-at-home mom, but I wanted to make that choice; however, He has a plan for me to do this now.  So, I'll become the best stay-at-home mom in the whole world....right next to the other MdDS stay-at-home parents. :-)

The song "Miracle" was on Celine's lullaby CD.  Its a song that used to help Seth fall asleep when he was a baby.  Josh bought the CD for me for my Mother's Day before I had Seth.  This song was one that to this day brings tears to my eyes, and takes me back to nights rocking in our office chair with him on my chest humming the song to him. 

My mom taught me to be the best mom I could be, no matter the situation, so I'm going to be the best mom in this situation.