Dear Citizen readers,
A year ago this paper published an article that consisted largely of a letter I wrote to Dr. Margaret Somerville (“The shortest life,” Aug. 5) about carrying my baby to term despite discovering from an ultrasound that he had much fluid on his brain and a severe heart condition; two abnormalities that my husband and I were told would most likely result in a difficult life and an early death.
I signed the letter only as MG but, since then, Dr. Somerville has told me that many people have been wondering how the pregnancy ended. So, I would like to tell you that part of our story, which I lovingly sum up as “A Beautiful Life: 30 Days of Pure Love.”
On the evening of the first day of school last September, my husband and I (both teachers), arrived at our local hospital and were told by our specialist that we would not be heading to work the next day. I was already four centimetres dilated and so our son, who was just shy of 35 weeks gestation, would be delivered that evening. At 11:30 p.m., 4-lbs.-11-oz. Joseph Earl Francis was born via C-section and handed directly to his father, breathing on his own, and heart beating strongly. Barry and I quickly fell even more in love with him.
Over the next six days in hospital, Joseph continued to amaze family and friends with his strength.
He stayed with us constantly in a palliative care room provided by the hospital and was only assessed for vital sign checkups, as healthy babies are. He breastfed well and was the centre of attention for each of his visitors who held and kissed him all hours of the day and night. He wasn’t even bothered by non-stop picture-taking, including beautiful ones, that we treasure, taken by a photographer associated with the Now I Lay Me Down To Sleep foundation.
On the Monday following his birth, thanks to the wonderful efforts of the neonatal intensive care unit doctors, outreach co-ordinator, and palliative care doctors and nurses, we were able to take Joseph home to live out the rest of his life and to die peacefully. Once a week, members of a palliative care team visited Joseph, assessed his heart and lungs, and helped us to prepare for his death.
For three weeks at home in Rockport, Joseph continued to astound people with his perfectness and gentleness as he had at the hospital.
His popularity never dwindled and he was held without complaint almost all of his life. He made valiant efforts to nurse and we felt he was fully present with family and friends.
For each day of his life, Joseph entertained no less than two visitors a day, was read to, sang to, and told over and over again that he was the cutest baby in the whole wide world.
On the weekend before his death, Joseph struggled with the pain he must have felt from the worsening of his head condition that caused both the shape of his skull and weight of his head to change. Two days before his death he was given morphine for pain, and though he still seemed somewhat content, it was clear that his time on earth would soon end. At 11:30 a.m. on the first day of October 2008, after being read to and kissed by many of his family members, Joseph went to rest forever in his daddy’s arms.
The 30 days of our son’s life will never be forgotten by our family and the many friends who supported us on our journey. As we continue to be today, we were constantly amazed by the outpouring of love we received from others. We cannot tell you how many people told us they were praying for us, but can tell you that we received hundreds of cards and that Joseph’s Mass of the Angel’s funeral was attended by more people than could fit in the church.
Looking back, we regret nothing. Despite the fact that we knew our son would be seriously disabled and was not going to be the next Einstein or Olympic athlete, we are pleased that we gave him the chance to live and that we loved him the best way we knew how. We feel blessed to have been able to have cared for him alongside such great family members, friends, doctors and medical staff. And, sad as we are to live without him, we feel grateful that he is a saint in Heaven, bearing no pain and feeling ultimate love.
Joseph, despite his very short life, greatly enriched our and many other people’s lives. A friend recently told me that she thinks the small dash on gravestones that indicates the “between” of birth and death can explode with meaning depending on the life attitude one chooses.
Upon reflection, I figure that regardless of the short distance between the dates before and after his dash, Joseph’s dash counts because it signifies love; love to stay living inside my womb, love to meet us; love to fight for his life; and love to die peacefully when it was time. His was a beautiful life … 30 days of pure love that sure did count.
Genevieve Lanigan (Joseph’s mother)
Saturday, September 12, 2009
30 days of pure love
Earlier this week, I was shown this beautiful letter published in Ottawa Citizen and I thought I would share it with you in full.