by Áine Ní Shionnaigh
Last week, I referred to a piece of prose “Welcome to Holland”, which employs a metaphor of excitement for a vacation to Italy that becomes a disappointment when the plane lands instead in Holland. “Holland?!?”you say. “What do you mean Holland ?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
On the 2nd of January 2006, I personally landed in “Holland” when my beautiful daughter, Grace Anne was born. After a beyond perfect pregnancy, in one of the top hospitals in the world, something went terribly wrong and nothing could ever have prepared me for what lay ahead. A few hours after the birth, I heard those dreaded words that no parent should ever have to hear, “I have some bad news for you, your daughter has suffered a severe brain injury. She is currently on life support and it is doubtful if she will make it past day two”. In that instant, my life and the lives of many others changed forever.
The nightmare had begun, what should have been one of the happiest moments of my life, seeing my first born for the first time, became very dark, very quickly. When I saw my daughter she was unrecognizable, covered in a maze of invasive tubes, many taped to her cute little face. I couldn’t hold her or touch her. She was in an induced coma to try to prevent any further damage. I wanted to take her out and run away from the nightmare in which I found myself living. Instead of bonding with my daughter, I was bombarded with medical terminologies, MRIs and CAT scans of my newborn’s brain, where, as one doctor glibly put it “everything had been wiped out”, there was no longer any differentiation between the grey and white matter. I was even dissuaded from pumping my breast milk, advice I ignored as I wasn’t as ready to give up. Through endless meetings with doctors, specialists, a bereavement counsellor, a chaplain, the local funeral undertaker, I struggled so hard to find some small comfort in the idea that Grace Anne was an angel and would always be with me, something that no earthly person could ever be. She was christened on my birthday in the NICU and then the machine was turned off, a few tense moments passed and then Grace Anne revealed her ‘West of Ireland’ determination. She wasn’t quite ready for heaven yet, when the humming of the ventilator subsided, she took her first breath on her own.
I was told a complex multiplicity of medical conditions that my daughter would have. Any single one of these issues would be catastrophic on their own, I was taking in tens if not hundreds of them. I met with many different specialists all dealing with different aspects of Grace Anne’s condition. Any information was of course bad news. She left the hospital on Valentine’s Day with a diagnosis of severe quadriplegic cerebral palsy, severe seizure disorder, severe digestive disorder, severely impacted muscle tone, legally blind, and a myriad more conditions all caused by the brain injury.
One of the most difficult challenges was how to respond to people’s reactions, which is something I may write a book about someday, “What NOT to say to a parent of a child with special needs”. I constantly heard comments such as “such a shame and she is so pretty, she could have been a model”, “ you are great, I could never cope with that”, “God won’t give you a cross you can’t carry”. I ached to rewind my life, to have a life that did not revolve around therapies and doctor appointments and trips to the ER in the middle of the night that ended up being week long hospitalizations. Being a first time parent is an exhausting, puzzling experience anyway under the best circumstances. Being the parent of a child with a disability extends the parameters beyond the place to which most people can relate. The tension created by this isolation exacerbates the all-consuming grief. I was tired beyond belief; there were no answers only endless suggestions, which although well-meaning, become almost painful to hear. The answering machine was always full and I hadn’t the energy to listen to messages. In the beginning I needed to shut the world out to conserve what little energy I had left to look after my special child who also had severe gastric issues which meant she cried constantly all day long. The night was my only reprieve, to sleep and slip into silence. I badly needed extra help, extra kindness, extra compassion but I didn’t know how to ask for it. I had learned to put on as I called it ‘my suit of armor’ to stifle my feelings of absolute grief, sorrow and despair. I was in mourning but I couldn’t mourn the loss as Grace Anne had way more needs than a typical new baby.
Having Grace Anne changed the way I view my life. My priorities changed completely, what used to seem so important is so totally irrelevant now. Grace Anne has a great deal to offer the world. She has taught me the real meaning of unconditional love, happiness, perseverance and determination. Putting aside the medical issues, she is a cute red haired, blue eyed, freckle faced little girl who was born with a happy fighting spirit and seems tuned into a better quality frequency than the rest of us. If I ever take time to cry, she thinks I am laughing and she starts to giggle. I feel there is something deeper here, that she knows love and grief spring from the same well. Grief can wake us up and make us whole in a way we never were before. I almost feel I am a more complete person now than before.
Life did get better and the time came when I began to feel positive and energized again but only and I stress only, because I am lucky enough to live here in the US where it is recognized that the parent of a child with a disability needs professional help to assist them looking after that child. A situation with a child that needs 24hr care is overwhelming. Currently, with the help of my beyond amazing nurses: Diana, Imelda and Valerie, my life has become livable again, I can now see the light again at the end of the tunnel. I don’t want my life or Grace Anne’s life to be defined by her disability. Next week I will tell you all about Grace Anne’s amazing school: iHOPE, the International Academy of Hope, www.ihopenyc.org, which has succeeded in giving hope again to Grace Anne and I. iHOPE has the chance to change the lives of children that everyone else has given up on. Its purpose is to give hope to special children and their families and that it does. Grace Anne and I would love you all to join us at iHOPE on Thursday, June 26th at lunchtime 12 – 2 where I will host a special Irish American luncheon to introduce iHOPE to the Irish American community. I hope to see some of you there. www.ihopenyc.org for details. To be continued next week…..