I'm here - you can cry!

Many times when you have a child that is in and out of the hospital or has longer stays in the hospital, as we have experienced with Emily, sometimes you just feel alone.  Even though the hospital is filled with kids, parents, grandparents, nurses, doctors ~ you name it ~ the hospital is filled but you feel all alone.  I remember times when i would be almost jealous to some degree that Bryan got to go to work, live his normal life, live day-to-day while I stayed in the hospital.  Obviously he had to because we needed his income - that was a given.  Everyone seemed to live there life but i felt like time stood still.  I felt like i was frozen in the middle of the street and all around me people were moving lighting fast ~ time stands still when your in the hospital.  The only way i knew what day it was - was if the nurses remembered to write the day and date on the white board, otherwise, it was by how quiet it was in the hospital and/or what shows were on.   

Feeling so alone there are days when you feel like no one understands, no one gets what its like to live in the hospital day in and day out.  No one understands what its like to have to shower in a bathroom that millions of people have showered in. No one seems to know what it feels like to sit and eat lunch by yourself, while your daughter lays in her hospital bed on a vent. I would feel almost guilty for leaving her side for just 20 minutes to eat lunch.  Its the loneliest feeling.



Living in the hospital the staff now becomes your family and best friends.  I remember one nurse we had on the weekends back in 2007, she would come into Emily's room ~ "hide out" ~ and talk to me until nearly 3:00 am.  It was wonderful to become connected with someone in the situation we were in. She was so compassionate, so understanding and did whatever she could to make the situation a little more comfortable.  She went above and beyond what a nurses job entails!  To this day, we are still friends!   

Because I couldnt sit down and cook a meal ~ all our meals were at the hospital or Bryan may bring me something that i was craving for so long or we would make a trip to a near by restaurant if one of our parents could sit with Emily that long.  Bryan and I had an agreement though ~ in order to have some "normal" time together, we always allowed for the first 10 minutes of our conversation to focus on Emily.  A time for me to fill him in on something I either forgot to earlier in the day, new results that came in when he was on his way to the hospital or anything else.  After that, all conversations were about his day and what was going on with us...not Emily.  It helped alot.

It was always so hard when we would get some bad news or, like when she coded and went to ICU (in 2007) , I always felt i had to be strong for everyone else.  I didnt feel I could ever just break down and cry.  My time to cry was either at night when i was assured Emily was already asleep (so i wouldnt upset her) or I would have to go into the bathroom and cry.  I never wanted Emily to see me upset but sometimes the aloneness, news or just simply the situation really got to me.  Sometimes I wish so badly that someone would have just simply come to me, pulled me aside and said "I'm here, go ahead and cry".  It was a tough situation and I have grown since but it still doesnt mean there are times i still need to just cry.  I think when she was ICU especially, I needed someone to just come up and wrap their arms around me and let me have a moment to get it out. 

I have dealt with alot of guilt.  I know i could have never foreseen the future and where Emilys life has lead us down, but as her mother, I feel as though I should have protected her and that somehow I am to blame for this.  I mean, i was on fertility medication to get pregnant with her...did that do it?  I did start getting toxemia with her...did that do it?  So much guilt plays a role and that adds to the feelings of being alone in a situation that is out of my control.  I cry alot but feel i need to wear a mask.  A mask is put on to allow people to think things are ok, when deep down the weight of guilt overtakes sometimes.  When at the hospital the mask stays on until the lights are off at night and i can just let it out.  Its a hard situation to deal with  and harder when you feel you need to be strong for everyone else.

We all need that extra helping hand, that extra hug, or that moment to just have a good cry.  Next time you see someone in a  situation, not knowing what to say or what you should do ~ just go up to them and let them know that you are there. Its hard to ask for things, for help, for a hug so maybe just do it instead of waiting for them to ask.