Big Girls Don't Cry

Yes the song by the Four Seasons, or in my case a night to see the musical Jersey Boys.  This past weekend was a night out with my mom and sister in Washington, DC. 

First dinner at the Willard's Occidental.  Delicious dinner before the show.

Here is when the crying part comes in...

My phone is sitting in my lap.  It was the first time in a while that Jeremy is home with all three boys...it has been a while since Jeremy has put Brayden to bed.

Putting Brayden to bed is more than pjs and night-night prayers.  It is an hour long process filled with machines and medicines.  I did everything I could to prepare things ahead of time.  But still not a comfortable task for Jeremy.  Jeremy usually handles Carter and Luke while I concentrate on Brayden.

Before dinner was even on the table, he called my phone.  I did not hear it, even though it was in my lap.  He called my mom's phone.  She passed it to me.  Jeremy is flustered and frustrated because he cannot figure out how to give Brayden's medications.  I do my best to explain it to him, only getting both of us more frustrated.  I walk outside the restaurant to the beautifully decorated courtyard at the Willard.  Christmas decorations glowing all around.  Tourist passing through to take pictures while I am cowering in the corner trying not have those around see me crying and be a scene.

It was too hard.  I just wanted to head home.  It was too much.  I was frustrated, as was Jeremy.  I rarely leave home without Brayden and when I do, his nurse is there.  This night, Jeremy was on his own.  He has not done Brayden's medications and machines on a regular basis so he needed a lot more instruction.  I tried and tried to explain to him but it was like a conversation of "Who's on first" but with medical jargon...it was just becoming more frustrating and confusing. 

I decided to go back into the restaurant, finish my dinner quickly and head home to get Brayden's things done.  I sit down at the table, my mom and sister ask me how things were going and I start to cry.  Jeremy calls me again to see how I was doing, make sure he did things correctly and try to convince me to stay.  I dash to the bathroom but there were people in the bathroom so I head for the coat closet, more tears (and I was having a good make-up day until then).

I felt defeated.  I just get tired of being the one responsible for all of Brayden's needs.  One night...all I asked for was one night of a dinner and show.  And I end up crying.  I was beyond frustrated.  The last thing I wanted was the night to be a mess, let alone mess it up for my mom and sister.

Let me tell you, I am not a crier.  So for me to be running all over this nice restaurant crying...well it says a lot about my state of mind.

After my final call with Jeremy and a good bit a tears of frustration, I go back to the bathroom to clean up.  I was going to stay for dinner and the show.  Even though my head felt like it was in a fog from trying to stifle the crying too much, I enjoyed the show and time with my mom and sister (fun songs).

Being a mom to a special needs child is a heavy load to carry.  Most of time it is just your norm.  You always do things to take care of your child...because it is your child and you would not have it any other way.  But there is just not a break or even just a breather.  It just does not feel possible.  Too many things to be done; over four years of experience of taking care of him...building upon each medical thing and little "tricks" to get Brayden's needs met.  Too much to explain to anyone for just a night away.

We have learned that I need to show Jeremy how to do all of Brayden's things.