Julia was a beautiful, vivacious young woman with cystic fibrosis who beat the odds for many years. Her mother and I were at the University of Pennsylvania Hospital in November 2017 sitting vigil with our children, hoping and praying they would both be able to come home with us after extensive lung infections. We CF parents understand the path we walk together and are always drawn to each other sharing about our child and their particular journey with cystic fibrosis.
While Claire recovered just enough lung function to be able to take a train home to Los Angeles, sadly Julia was not able to recover this time. Her hospital stay was just over 2 months and although the doctors and amazing team of specialists at U Penn worked very hard, she reached her final resting place at home surrounded by her loving family shortly thereafter in hospice care.
Julia was loved by all, especially her 5 year old son. Many women with cystic fibrosis are not able to bear children but some are lucky enough to have this experience. Her son was her pride and joy and she will live on in his heart forever. She will be greatly missed by her husband and her mother and I have been very touched to know of her and her brave battle, her triumphs and the angel wings she recently received. Breathe easy dear Julia.
Her mother and I connected again shortly after Julia’s death and she shared with me that the 2 month stay in Pennsylvania, far from home, had caused financial distress and coupled with the loss of her only child, she felt quite overwhelmed with little support. I was grateful to share with her about our Extended Hospital Stay Program and accepted her application immediately. We were able to pay several of her larger bills so that she could feel supported and loved by her CF Community while beginning the long process of grieving.
“During my daughter Julia’s last and final hospitalization, which lasted 2 months, I crossed paths with another CF Mom and we found comfort in each other and our shared experience. I kept her card and found the Claire’s Place Foundation website easily and applied for a grant for assistance considering all of the expenses incurred during our long stay. Their financial help made a huge difference to me and enabled me not to go into further debt, while grieving the loss of my darling girl. In addition to the financial help, knowing there are people who care and donate to this cause during a difficult economy has given me emotional strength and reinforced my faith in the kindness of strangers. I see your face before me Melissa and our meeting changed my life way beyond financial. I am feeling much better as time lessens the pain and heals the soul. I’ve come through the other side with a sense of peace that is remarkable. Of course my sadness and loss is always there, but I am so grateful for the life we had together and for all the emotional and psychological support I’ve received during and since my time with Julia. With gratitude, Julia’s Mom”
Our hearts are with you all ~ all of us walking the road with a loved one with cystic fibrosis or any terminal illness. It can be a lonely and scary place for sure with many ups and downs sprinkled with little miracles along the way.
Thank you all who support this program ~ as Julia’s mom writes, it is a small kindness that we can do for others who are suffering.