In an ideal world, Christmas would rhyme with happiness but in this imperfect life, it sometimes differs. Our beautiful white Christmas can turn into gray skies. This year again, while some gather to celebrate, others will face the illness of their child one more night. A little one born too quickly, a little princess who wants to leave too early, an emaciated and bald child… While these families will be battling in the biggest fight, the lights of the overcrowded shops will illuminate the late shoppers, trying to make it in time. This is what Christmas at the hospital can be all about. It is a universe where life is played at a complete other level.
Hope and words
Supporting a sick child is an unspeakable ordeal for any parent. Feelings of injustice, helplessness and fear are unfortunately part of the journey and in this holiday season, those emotions can be intensified by the oddness of the situation. How not to feel alone or abandoned when everyone is celebrating while our life seems to be playing tricks on us. In those moments of relentless lucidity, it may be difficult to keep hope. What if happiness never comes back? What if Santa Claus forgot about our child?
Like a gift, a glimmer of hope, here are a few words of parents who walked this difficult path. Like a balm for the heart, those extraordinary women have messages for all those who will spend Christmas with their sick or different child.
When my daughter was born at the end of November, I was quite sure that she would be home for Christmas. After a month, I realized that it would be longer than expected (she finally came home in March). She spent her first Christmas in hospital. Every night I found it hard to leave her and to only come back the next morning but on that particular evening, it was even harder. My parents came from France but I did not feel like celebrating. A nurse who was taking care of her gave us the most precious gift. Even though it wasn’t during visiting hours, she told me to ask my parents to come, she brought the little warming bed and all the equipment in a little room and she allowed us to spend an hour all together. I will never forget what she did. I often talk to my daughter about that nurse. I wish you all to find someone like that along the road. And may all your Christmases be healthy.
Sophie, mother of Héloïse, Russell-Silver syndrom
For this little being born too early, who will sometimes hold on to his life and sometimes fly away, there is enough love in your heart to accomplish a little more, whichever path is taken. A second at a time at first, forget about everything else and focus on loving your child. He will be part of you forever. Be strong!
Caroline, mother of Camille, premature baby
Hmm... What really helped me is the love and support of people around me. Not only in their words that were often clumsy but in their eyes, in their hugs. It was the people who welcomed me and encouraged me to work harder. They understood me in the love I was holding and that I still hold for my little Camille. I clung to those who see the extraordinary in the simplicity of things, whether they were family, friends, medical staff or professionals. I wish all parents to experience the birth of their child with joy because it is a wonderful moment…
Valérie, mother of Camille
After the big announcement, we made the greatest decision of our lives. We decided to live. In life, we must go forward, enjoy life for what it is right now, love and accept our child for what he is and appreciate the life that was give to us. Happiness lies in choosing to be happy no matter what happens. As parents and as a couple, we always made decisions together on matters that concerned Ophélie. We respected and listened to each other. Our strength lies in our adaptability and in the bond and love that unite us, stronger every day, in good and bad times. When had so much to learn from Ophélie and we grew so much… We don’t regret one second spent with her and we thank life to have given us the chance (and the strength) to be her parents. I wish you all the same!
Stéphanie, mother of Ophélie who has a degenerative disease
And for my part, I wish you all to be well supported. By your parents, your family and your friends of course but also by people who live a similar situation, people who will share this strange universe with you. For us, meeting with such people helped us bring some humanity to our first Christmas in intensive care. A simple meal with parents of children born too fast or too different, just for an evening, made us realize that life could still be beautiful and that we could still laugh and smile.
Anne-Sophie, mother of Joséphine
Obviously, I want to thank all the mothers who generously accepted to deliver their testimony. Thank you Sophie, Valérie, Caroline et Stéphanie. Special thanks to Stéphanie, her family and her beautiful Ophélie.
