Have you ever seen the movie Groundhog’s Day? It’s the one where Bill Murray is stuck in a time loop and keeps waking up on Groundhogs Day repeating the same day again and again. No matter how hard he tries to get out of this time loop he still wakes up on the same day. That is my life. Every day is Groundhog’s Day.
I am a wife, a mother or four beautiful girls and a NICU Nurse. Two of my girls are chronically ill, one of my daughters is Autistic and my husband is a cancer survivor. I love my children and my husband with my whole being, but in my wildest dreams this is not what I imagined my life to be.
Being the mother of chronically ill kids is not easy. By nature we are supposed to kiss boo boos and make them better. Sitting on the sidelines and not being able to fix what is broken leaves me feeling helpless and full of anger.
Being a Nurse is not any better. I know enough to make myself crazy and not enough to make my kids better. I spend my shifts at work mending other people’s children, but I can not fix my own.
Autism. Autism is another world of it’s own. Autistic children are supposed to be provided with structure and normalcy. They are supposed to follow patterns and routines. How can I provide that when I don’t know if I will be at home, in a doctor’s office,or hospitalized with my six year old for three days?
I love when people tell me not to worry and it will get better. If you are the Mother of a chronic, you know….it’s not going to get “better”. Especially when there is no cure for the illness that your child has. It will never be “better”. There will be hills and there will be valleys. There will always be doctors appointments and meds and hospital stays. Your overnight bag will always be packed for a just in case midnight ER visit. You will always worry when your chronic has a fever or cough or a poop that doesn’t look just right (you know it’s true).
That is not “better”; it is at it’s best Groundhog’s Day. So if you are reading this and you are NOT the parent of a chronically ill child……stop telling chronic moms it will get better!
If you did watch the movie Groundhog’s Day, you know that Bill Murray does eventually escape his time loop. He does this by reexamining his life and the way he is handling things. He realizes that changes need to be made and he makes them. He appreciates the hills, and learns to cope with the valleys and make the best of them.
The first time my oldest chronie got her chemotherapy treatment we shared a hospital room with a two year old little boy. He had a brain tumor. The doctor’s came in and told his family he was not going to make it. My daughter was getting chemo, but my daughter was going home. She may never be “better”……but she is alive. I got to take her home and hold her hand through the hills and the valleys. I bet my life that the little boy’s parents would have given anything for that.
So while I may be stuck in Groundhog’s Day and I may have to watch my kids feel sick, miss their birthday party and dance recital because they are in the hospital, I have to pause and remember …….I still have my kids. Although sometimes I want to run away from them (like right now as I am trying to type this) ……. they are still here with me.
How do you make life with chronically ill children better? Let’s figure this out together.
Fate whispered to the Warrior “You cannot withstand the storm”. The Warrior Whispered back “I am the Storm” ~Author Unknown