During my daughter’s birth something went wrong. I had been in labor for a reasonable amount of time, and everything was progressing properly when suddenly, the doctor announced that the baby was not happy where she was and needed to be gotten out immediately. I do not remember everything. I remember severe labor pain. I remember something about forceps. I remember that she did not move or breathe. I remember they intubated her and took her away to a Neonatal Intensive Care Unit. I remember terror.
This was how my daughter’s life began in October 1994. This was how my life as a mother began.
We were able to bring Lueza home from the hospital twelve days later. We knew she had seizures at some point and had been prescribed phenobarbital to stop the seizures. She slept most of the time in the NICU because of the drug but was weaning off it as the days went by. She had started nursing. We were hopeful that it was just a scary birth, and everything would be fine. We had scheduled a follow-up appointment with a neurologist a few weeks later. We left the hospital with our daughter on a beautiful October afternoon and walked to my parents’ apartment a few blocks away. We did not leave for nine months.
Everything was not fine.
Lueza had sustained significant brain damage. She developed a new kind of seizure a few months later called Infantile Spasms and went back on anti-epileptic medication. When that medication did not resolve her seizures, she was prescribed a treatment of ACTH, which required twice daily intramuscular injections into her upper legs. My husband immediately stepped forward to learn how to do this as I felt incapable.
Just writing these words is hard. It brings back all the memories of those early days.
The feelings were grief and terror. I had the feeling that life had been ruined. Our baby had been severely injured on the day of her birth and we were all ruined.
But we were not alone.
We were living with my parents. My mother would hold Lueza and sing to her when we were having a bad night. We would watch Seinfeld with my parents on Thursday evenings. They took care of us. My mother cooked us dinners. They loved Lueza. They comforted us.
For the longest time in those early months, it was hope that got me through the days. The hope that she would catch up. The doctors and therapists kept using the word delay. Lueza’s motor development is delayed. In my mind that meant that she would eventually be okay. It might take a little longer to walk and talk but it would all work out.
And one day I was watching Lueza looking around as she lay on her back, and I asked my husband if she would always be lying down. He said: she may be lying down but she may be very happy.
I know that memory is a tricky thing, but I remember clearly that his words went straight through me. She may be very happy.
And she was. Very happy.
Little by little I was able to give up all hope of what she would be able to do or not do and realize that she had the miracle of a joyful spirit. Lueza was happy. She loved us. She loved life. She loved her younger sister Dora.
We finally figured out her way of saying yes and no. She couldn’t speak but she was able to make a sound like aye as she turned her head to the right for a yes and a slight shake of the head for no as she lay on her back.
Lueza loved the Matterhorn rollercoaster at Disneyland. She loved the rides Jurassic Park and Back to the Future at Universal Studios. She loved watching movies.
Lueza did not care that she traveled by wheelchair or could not speak. She was happy lying down. Of course, there were tears and frustration when she could not explain what was wrong, but we would eventually figure it out with yes and no questions.
Her happiness let me accept the reality of her situation. Yes, she was severely physically disabled but she was HAPPY. We found amazing schools for her with teachers that loved her and were excited for what she could learn.
Of course, at a certain point I realized how vulnerable her lungs would become and we had to face the reality of her medical fragility. I knew what was coming before we would ever be ready.
When Lueza started having frequent hospitalizations for aspiration pneumonia she was about thirteen years old. It is hard for me to write about. I was thinking about death a lot. It was a coping mechanism for me. Maybe if I worried about it constantly, I could keep her safe.
Being in reality about her situation made every day precious. She was with us. She was happy. We were okay.
Lueza died when she was sixteen.
Yes, she was medically fragile, but it was shocking. Shocking and devastating.
We are all together in this at The Compassionate Friends.
We have all been through this dreadful day.
We grieve as we can and remember joy and lives full of everything.
We find our way.
For me it was writing.
Writing and remembering her extraordinary and precious life.
We are all together in this.
Remembering what we had and what we will always have.
Love.
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My son contracted meningitis when he was 13 days old. This resulted in his developing hydrocephalus and a continuing series of shunt placements. Your story of Lueza resonated with me because we had so many, many episodes of almost losing him over the years. He was a happy guy and loved to tell corny jokes. He loved John Denver and Jimmy Buffett and called me Mama Bear. He loved tie-dye everything. Through our journey of his life, we became indelibly bonded. I lost him to aspiration pneumonia 3 weeks before his 52nd birthday. He knew he was very ill the week before he died. I told him he would be the only one in the Universe with tie-dye wings. A friend created his image that I will use as my permanent profile picture. Charlie brightened the life of everyone he came in contact with, and I miss him terribly. Hugs and loving comfort go out to you and your family. Our special ones take a part of our heart and soul when they leave us.