My Todays 

It’s been months since my last blog post.  I have not had it in me.  Whatever ‘IT’ is that allows me to write this ever so personal blog, it has been missing.  

I’ve started lots of blogs….in my head.  I haven’t written anything down outside of a social media post.  There were the 30 days of thanksgiving where I posted each day of November about something or several somethings I am thankful for.  Eventually, I will transform those posts into a blog or a series of blogs.  This post though, is maybe a prelude.

I have been angry and sad and mad and exhausted and infuriated and humiliated and grateful and happy and joyful and so tired I can feel it in my bones.  I’m not in a place today where I can write about all of the things that are making me feel all of those ways.  But  I’ve prayed so much and I know all of it is part of my path to Heaven.

I was at adoration in the middle of the night last week.  On my knees in front of Jesus I said it all.   I told Him I’m so mad that my kids are not healthy.  I’m absolutely infuriated that, as a parent of a child with nonsense mutation Duchenne Muscular Dystrophy, I have to exhaust myself and expose myself to any media outlet that will listen, that I have to take time away from my family to write letters, travel to the Washington, and make noise to get the FDA to approve a drug that is making things better for my boys.  I’m even more mad that I have to do all of that on top of everyday Duchenne.  I’m shaking with anger that I have to do all of that and it is not even a cure.

What’s worse is that I have one partner in all of this that loves my children as much as I do.  I’ve been mean to him.  I can’t take this out on Duchenne because as much as it is a part of my life, it is not here for me to take it out on.  Instead, I take it out on my partner, my best friend, my husband.  And even worse than that, he knows what I’m doing and he won’t fight with me.  Which is a blessing for my marriage, but it doesn’t help relieve any of my hurt, my frustration.

I said all of this during adoration.  I ended up in spontaneous prayer and caught myself saying…’thank you for letting me be their mom and his wife.’  They are my joy and happy that go with my awful and terrible.  Can I have one without the other?  If not, then I pick both.  If I can only have them with Duchenne and all my heartache, I still choose them.

It’s been a bad couple of days.  I’m more tired than usual.  There has been travel and stressful situations and an emotionally exhausting series of events.  

And then there is the fact, that everyday bad days that we all have do not exclude parents of children living with the burden and stress of a rare and fatal disease like Duchenne. Today my son fell 2 times, both times in public, both times there were messy tears and people watching. This same son has recently stopped tying his own shoes because he said it is getting too hard.  My other son needed his scooter to get into his sister’s basketball game…a walk he would normally make on his own, but  because he played on an indoor playground today he did not have the strength.  The same son has recently stopped using stairs, except for the two in front of our house and has told US that it is is time for a ramp.  These are all signs the disease is progressing.  No matter how hard we work, we can’t stop it from doing that.

Then we have all the normal stuff mingled in with the guest we didn’t invite.

I am pissy because my daughter’s team lost their game and she is struggling with a stress fracture.  There are still mean girls at her high school;  even with everything else she deals with as a sister of three brothers with Duchenne…it makes me mad that she doesn’t get a free pass from all that.  I’ve missed several workouts because it is too hard for me to juggle finding time for me and all the kids needs when they are all home for break.  I feel guilty for feeling that way because one will be off to college in two years, I don’t know how much time I’ll get with the boys, and the little ones will only be little once.  My great big van is not big enough for a lift and is adding stress to my life as I anticipate three of my kids going off their feet.  Icing on the cake…my dog had diarrhea while I was at a basketball game today and only one of the piles of watery poop was on the laminate wood floors!  And my husband is physically unable to clean such a mess without dry heaving.

I am not as strong as people tend to give me credit for.   I cry in the shower so my family doesn’t see.  A lot of those showers end with me giving myself the same pep talk.  I tell myself not to cry because I have them here with me.  I know far too many parents whose children are not. Don’t cry, you’ve heard their sweet voices say, “I love you.” Don’t cry because you get to hold them. Don’t cry, your children have had the opportunity to run and play without the confines of a wheelchair.  Don’t cry, your children are so very loved and they will never question it.

I have to search for the silver linings.  I live everyday knowing there is a possibility that I will outlive half of my children.  There will be a day I can’t hold them or hear them.  Everyday, I see my children living less and less independently, without the help of a scooter or me as their legs.  Someday they will be confined to a wheelchair. 

I get through it all because that day is not today.  And I don’t want to lose today to my grief for tomorrow.  I have to live today TODAY.  That’s what living is right? Living like there is no tomorrow.  I don’t do it the right way everyday.   I need to learn to balance my needs with making the most of today. But for as many todays as possible I want to make the most of every day and every minute I get with my kids the way they are today.  And tomorrow I want to make the most of every day and every minute I get with them the way they are tomorrow.  

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