How I Do It

As a working Mother of 3 children, two of which have disabilities, people often say, "I don't know how you do it."   My response was always, "I have no idea either, but I do."  Deep down I knew that if I didn't "do it" nobody else would, and when you do not have any other options - a Mom has to do what a Mom has to do.

Part of me thinks I have strategically bitten off more than I can chew career-wise, because if I actually did have down time I would probably just spend it in bed feeling bad for myself.  I keep busy because I have to.  I am a scheduling queen.  Between 3 jobs and 3 kids (4 if you count my husband), my day is packed.  There is no wiggle room or room for error.  And that keeps me sane.

If you are a parent of a child with a disability, you probably hear about self-care all the time.  Well meaning friends and relatives say things like  "I hope you are doing something for you." with a pitying look in their eye. Although sometimes I feel guilty when people tell me to "take care of myself".  I feel this way because when I think of self-care, I think of physical things.  I feel bad because I am not running, or eating better.  But then I refuse to allow myself  to have negative feelings over an idea that is supposed to make me feel good!  I do practice self-care.  When I can afford it, I get my nails done.  I even go to the salon to cover my every greying hair with a nice shade of blonde. 

I recently signed up for Paint Nite as a fundraiser for my sons school.  I have wanted to do one of these events for the past few years, and was very excited when the opportunity arose.  It looked fun, and creative - right up my alley.  I was lucky enough to be able to experience this night with some of the best people I know. 

The night started out great - drinks, and lots of laughs.  But within 45 minutes of arriving, I realized something.  I don't have fun anymore.  I can't seem to will myself to have fun.  It was nice to be out - but as I sat around listening to everyone laugh, drink wine, and tell funny stories - I felt nothing.  This was supposed to be one of those self-care activities, and it didn't feel fun at all.  In fact it made me feel worse because I couldn't participate like everyone else was.  I just wanted to go home.

It dawned on me that I can juggle everything in my life - but the price of being able to do so is steep.  I am not capable of allowing myself to have fun anymore.  Sure, I can achieve spurts of fun here and there.  I can laugh at a good joke, and have a nice lunch or coffee with my friends, but I am not fun.  This realization struck me because I used to be really fun.  I was the first one to arrive, and last one to leave.  Sadly, that is not me anymore.

The idea stuck with me for a few days, and I thought about it a lot.  I tried to analyze the night, and come up with excuses or reasons why I felt the way I did.  But it all made me fell pretty crappy. 

In the end, I decided I am okay sacrificing my fun-ness for my kids.  If being a bore is the way I keep them happy and healthy - it's fine with me.  Motherhood is about giving your all to your children, and my all just happens to be my fun side - and that is okay with me.

Jessica and the Boston Marathon

This past Monday was a day of firsts for many people in Massachusetts.  My family and I attended our first Boston Marathon.  My close friend Christina was running her first Boston Marathon, and she was running on the Children's Hospital team.  Jessica's sister Amanda has a lot of medical issues, so Christina graciously asked if she could run for Amanda.  It was the first time in my life that a friend had ever done something so touching and inspiring for my family.  Running 26.2 miles is HUGE.  And to run for my child?  Christina is the best in my book.

The other "first" that occured that day was not inspiring as the ones I listed above.  As I am sure you all know, Boston had it's first ever terror attack (at least in my lifetime) on Monday.  Bad things happen all the time, but they never happen to us.  The bad things happen to other people, in other cities.

Not this time.

We were cheering for Christina along the 13th mile of the race in a Children's Hospital cheering section.  It was a beautiful spring day.  The kids were playing on the grass outside of a lovely church, and I was lounging in my chair by the street getting ready to witness something I had never seen before.  I thought to myself that this was one of the best days I have had with my family in a long time. 

As the runners started to come by, I was feeling a sense of pride and excitement that I had never experienced before.  Each time a Children's Hospital runner came by in their orange and blue checked singlets, we would scream loudly and bang our cowbells (yes, cowbells).  It was hard not to feel  emotion when a runner came by and their family would hug them and share how proud they were of them.  Those men and women were running for children.  Sick children.  They were running 26.2 miles - putting their bodies through something I could never imagine.  Indredible.

Our original plan was to see Christina pass, and then drive to Boston and see her cross the finish line.  By the time she ended up passing us, we had been in Wellesley for about 3 1/2 hours.  Jessica was getting fidgety, and on the verge of a meltdown.  Amanda was feeling anxious because of the crowd, and Jack was just plain tired.  We decided that we would leave for home, and not go to the finish line.

Once home, we unpacked the car and I took Jack & Jessica over to Christina's to decorate her yard.  We wanted to let her know how proud we were of her.  How thankful we were for her friendship.  We wanted everyone who drove by her house to know that she had done a good thing. 

On the from Christina's to my house, I received a text message from her running partner who was out of state on vacation.  He asked what was going on, because he was getting alerts on his cell phone that there was an explosion at the Marathon.  I immediately turned on the radio, and knew there was something really wrong when a music station was streaming news from a talk radio station.  I listened for about 2 minutes, but once I got the gist of it I turned it off because Jack and Jessica were still in the car.  They didn't need to hear something potentially horrific about an event they just attended.

I was praying the whole way home that it was just an electrical fire or something less provocative.  Once I got home and saw the news footage, I immediately knew it was not an electrical fire.  The sidewalks were red.  Today's colors were blue and yellow.  Not red.

There were a few hours of frantic texting and calling trying to figure out where Christina and her family were.  I have never been through anything like this in my life - and I experienced it 3rd or 4th hand.  I can only imagine how Christina was feeling.  She is such an upbeat, kind, and inspirational person - I didn't want these events to change her. 

Luckily Christina and her family were safe.  You can read her story here.

I have been truly inspired by so many things that happened this week.  The heroism - the raw humanity of people in pain helping other people.  I used to complain a lot about stupid, petty things.  Not anymore. 

It is the little things that happen in your day that change your destiny.  Don't get mad at the next meltdown.  If you need to slow down for a friend, at the risk of not doing your best - do it.  It could just change your life.

And, by the way - I hope you all have a Christina in your life.  Mine is pretty freaking awesome.