The DoOverMom – Getting it right

2 Feb

I want a “do-over” – to rewind the clock and change my behavior.  Regrets?  I have many – most of them revolve around my son but the biggest one concerns my daughter.  For a long time I blamed myself for her illness – what caused her life threatening brain disease alluded top researchers but I thought I had it all figured out.  Five years before her first seizure When she was six months old, Beth fell from her infant seat.   I had failed to secure the seat in my car.  It was an old car, newly acquired and the seatbelt was broken. I drove around a corner and she slipped to the floor of the car bumping the left side of her head.  A trip to the emergency room reported no injuries but an infant’s brain is so delicate.  For a long time I was so sure that I was the cause of Beth’s suffering.  Hours spent talking with her neurologists helped me overcome those beliefs however during times of “what if’s”, I relive that horrible day and wish for a “do-over”.  Most of my nightmares take me back to my son’s tenth birthday.  It was February 21, 1987 and I sat in Beth’s hospital room watching her shallow breathing and praying that she would emerge from her coma.  I was exhausted and frantic.  Dr. Carson, her neurosurgeon, was confident that she would wake but he couldn’t tell me why her remaining hemisphere shut down.  Her brain stem was swollen and her fever was high.  Daily spinal taps did not reveal infected spinal fluid but he felt that she may need to have a shunt placed in her brain to prevent further swelling.  It was all too much to bear.  I couldn’t imagine leaving her hospital room even for a second.  The thought of celebrating a little boy’s birthday was overwhelming.  Brian was on his way – driving from Connecticut with our son.  One of Beth’s nurses offered to sit with her while we took Brian Jr. to the nearby Inner Harbor mall for dinner and to find a birthday present.  Another nurse made him a birthday cake.  I longed for my son’s hugs and to see his little face.  A child with enormous energy, he was also very sensitive and thoughtful.  I knew he loved his little sister and was confused about the tubes and wires hooked up to her body.  Her entire head was covered in bandages and she wore splints on her right hand and leg.  She had a feeding tube and her eyes were partially shut.  Her brother could not understand why she didn’t answer him or return his hugs. He truly believed she would wake up and sing Happy Birthday to him.  A typical seven year old, she loved singing the verse – “you look like a monkey and smell like one, too”.  We had cake and sang “Happy Birthday”.  We would save the monkey part for Beth.  After a short while our angel of a nurse, Shonagh Ramsay, came into the room and forced us out.  My little boy grabbed my hand and told me about the new Star Wars Lego set he had hoped he would get for his birthday.  He told me a second time, a third time.  I was deep in thought and did not listen.  His persistent begging for this gift pushed me over the edge and I yelled at him.  I see his shocked and fallen face in my nightmares.  I unleashed my frustrations and sorrow on my little boy – on his tenth birthday!  I told him he was selfish – that his little sister lay in a coma and that she could die!  My husband looked at me in pain.  He knew that I was losing control and he knew that I would surely suffer later.  He grabbed me and hugged me.  I felt sick to my stomach as soon as the words left my mouth.  I tried to recover and salvage what was left of his special day.  We searched every store in the mall for that Lego set but did not find it.  We let him chose a restaurant for lunch and he perked up.  I promised him that I would assign one of his aunts the task of finding the Lego set.  When we returned to the hospital he crawled into the bed with his sister being careful of the tubes and wires and began telling her knock-knock jokes – her favorite.  He told his sister that it would be the “best birthday ever” if she woke up.  She didn’t.  I begged God to help her – to help him – to help me – to help their dad.  HE did!

My “little” boy is now thirty-four years old.  He is a member of the FDNY stationed in Harlem.  He breaks my heart each and every time I see him.  I told him once that I wish I could have a “do-over” – to have been more patient – to give him perfect birthdays.  He replied that he knew I loved him deeply and that I was suffering horribly.  He told me that Beth needed me and that he understood.  My little boy – fighting fires all of his life!

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Forced Mindfulness

13 Aug

We had plenty of time for the 9AM mass yet chose to sit in the last row. The door was open and we could feel the cooling breeze being pulled in by the industrial fans. The visiting priest, retired from a Fall River parish, was standing in the back greeting church goers as they entered. I love this church. It is a quaint Island church named after St. Elizabeth who was cousin to our Blessed Mother. Elizabeth is also the name given to my mother and my daughter. My daughter, Beth, is with me and we sit comfortably and relaxed waiting for the mass to begin. A few years ago, I would not have been relaxed, patient or even on-time for mass. I would have been writing a shopping list, reading emails on my phone and thinking about the laundry, the cooking and the obligations I had that night. But, Beth forced mindfulness on me. After two years of non-stop seizures and a horrifying diagnosis, she had the only cure available at that time (1987). She had the diseased left side of her brain removed. The surgery completed a right-sided hemiplegia that began at the onset of her illness, Rasmussen’s Encephalitis. This hideous disease slowly eats away a hemisphere causing seizures and paralysis. It left her slower, more cautious and vulnerable to falling. A quick run to the grocery store became a two hour long event. Having her help with cooking a meal needed careful planning and a later dinner time. Showering, dressing, eating, walking, writing, and homework required more time. In fact, after spending nearly two months in a coma, it took time for Beth to learn how to talk and walk again. Her patience and persistence astounded me. She forced me to slow down. I had to pay attention to all that surrounded her. Not many had endured her type of radical brain surgery called a hemispherectomy and there were so many unknowns. Many who had this surgery would require shunts, a device implanted in the brain to drain excess cerebrospinal fluid from the brain into the stomach preventing hydrocephalus. Hydrocephalus is increased pressure inside the skull causing a multitude of problems: seizures, headaches, double vision, poor balance, stomachache, among many others. Often these shunts would require revisions because they shifted, became blocked or broke down. Beth came very close to a shunt but avoided it when her body temperature returned to normal and her brain-stem swelling subsided. Still, we were told to watch for signs of confusion, headaches, falls, and poor balance in the years to come. Fearful of falling made Beth’s travel in our world more deliberate, careful and slower. We entered a new realm where we were forced to be mindful.

Today, we sit in church. The visiting priest is now shaking hands with parishioners and is headed our way. He shakes my hand and turns to Beth. As she struggles to role up her right long sleeve which is hanging two inches below her tightly fisted paralyzed right hand, people are lining up to shake Father’s hand. I want to help her and role it up but she wouldn’t want that at all. I’m wondering why she just doesn’t shake his hand with her left as she normally would. Unable to straighten out her fist due to hemiplegia, she finally gets her sleeve pulled up and moves her right fist towards Father’s outstretched hand. To her surprise, he made a fist and “fist bumped” her! She let out the loudest giggle ever heard in church, I’m sure! They both shared a brilliant moment of clarity. He “saw” her exactly where she was. I asked her why she offered her right hand when she normally would offer her fully abled left hand to shake. She told me that she wanted to do a proper handshake and because priests don’t judge, she felt comfortable in sharing her true self. WOW! Well.thought.out.mindful.present.stuff! Love, Love this child of mine who gives me time to slow down my mind.

A Book, Unread

13 Aug

I was a multitasker. I rushed through everything I did; never really enjoying a conversation, a meal, a walk, an assignment or even a bath. Listening was difficult as I would be thinking about the chores that needed to be done as the person I was with was trying to have a conversation with me. It was as though I was holding my breathe checking off the years as I worked through life. My children even suffered because of my multitasking. As a working mom of two small kids, I ran my household with strict precision. Nothing fun could be had until all chores were completed. My husband was a football coach and the fall was our busiest season. I felt I needed to be on a tight schedule in order for my family to thrive. A regretful “multitasking” memory vivid in my mind almost thirty-four years later was the result of a request my then five-year-old daughter made to me as we were walking in the door after a long hard day at work and school. Beth was in kindergarten and Brian in second grade. She asked me to read her favorite story, The Good Night Book. I told her I would read her book to her after dinner. She asked again after dinner. I said after I cleaned up the dishes. She asked again when the dishes were done. I told her after I finished a report that needed to be handed in at work in the morning. After an hour went by, I got up from my desk to get them both ready for bed. Her brother was in his room playing with his legos and Beth was asleep oh her bed with The Good Night Book in her hand. I saw her sweet face framed by her wild blonde hair and my heart hurt. The book was only ten pages long! One week later, she fell from a seesaw at school and her seizures began. NOTE: Always – READ THE BOOK!

The DoOverMom – Getting it right

13 Aug

The DoOverMom – Getting it right

https://doovermom.wordpress.com/2012/02/02/the-doovermom/
— Read on doovermom.wordpress.com/2012/02/02/the-doovermom/

The DoOverMom – Getting it right

13 Aug

The DoOverMom – Getting it right

https://doovermom.wordpress.com/2012/02/02/the-doovermom/
— Read on doovermom.wordpress.com/2012/02/02/the-doovermom/

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