the beginning......

the beginning......

My son Tommy turned 21 last week.  He was born very prematurely @ 26 weeks, and has cerebral palsy.  For some reason, as I look back on 21 years, I have the need to chronicle, to remember our journey, to show others how far we have come and what it took to get here.  So here I sit…….

and I remember……

      I remember….. a conversation I had back in 1986 with my friend and manager at the time, Mary.  I had just transferred to queens VNSNY, and had gotten engaged, and we were discussing what we would do if we had a handicap child.  We were both nurses, and we talked about  Down’s syndrome and spina bifida.  I clearly remember saying ” I don’t know how I would be able to handle that”.  I was 25 at the time.    I married my hubbie, Bob and went about creating the yuppie dream, good jobs, money to burn, got the black labrador, saved up and bought our first house in a nice neighborhood in the burbs, and got pregnant according to our 3-5 year plan, and bought a Volvo.

      I remember….. one night while I was pregnant I woke up early with an incredible sense of peace, an indescribable feeling of calmness. I felt as if the Blessed Mother Mary was in the room with me.  I felt that all was right with the world and my life.

    A few months later I went into labor @ 26 weeks into the pregnancy.  The contractions started, we called the local police and ambulance who were there in 1 minute.  They had to carry me down the stairs on a stretcher with me saying to one of the EMT’s  “but I can’t be having the baby, I am only 26 weeks pregnant!”  Being a nurse, I knew this was not good at all.  He calmed me down and apologized for having to put a 16 gauge IV in me!  which hurt like hell by the way!   Off we go to the ER.   All hell breaks loose in the delivery room—everyone running around, I am scared to death as is Bob.  Everyone is understandably concerned about the baby, and I ask a nurse to please stay with me and hold my hand, and tell me what’s happening.   I will always be grateful to that nurse for staying with me.
     
     I remember……this tiny, tiny baby boy 2.5 lbs lying in an incubator with more tubes than I thought possible;  the knitted caps that volunteers made for all the premie’s in the Neonatal ICU;  The first book we bought and read to him every single day  “On the day you were Born”;  the tape recorder we left with the nurses to play for him so he would hear the sound of our voices;  sitting with the other parents in the waiting room day after day talking about our babies small steps; 
    
      I remember……coming out of the hospital @ 1am after Tom had a particularly rough day and seeing that Volvo and saying “who gives F**ck what kind of car we have! None of it matters when our baby could die at any moment”;  the late night phone calls that he had stopped breathing and could we come in?;  When I broke down in tears on the elevator in the hospital and a social worker was there with me and put her arms around me to help;  going to the chapel and praying.
   
      I remember…… the loving and professional care the neonatal nurses and doctors gave our son;  My father who was a stoic German came to visit on his own almost everyday;  my mom who visited with me in the mornings everyday;  my in laws who came only once during the entire 11 1/2 weeks of Tommy stay;  the baby, Michael, who was to be going home the next day and died that night——and the consuming grief his parents felt; 
and

     I remember……holding on to my husband for dear life thinking we WILL get through this, and that we picked a good wedding song : “Nothing’s gonna stop us now” !;   and that visit from the Blessed Mother that everything would be all right.  and naming our baby boy Thomas after his stubborn, stoic, loving, grandfather  because he would need all of that to make it through.

more next week, the first few years!