‘Your baby will be born with a very large hole in her back. Her spine will be exposed to the outside world. There is fluid crushing her brain and she has a condition that causes pressure to crush the brain stem. Until she has her first major surgery, her condition will be critical and the chances of her passing away in the first few days of life from an extensive infection are very high. She will have many surgeries throughout her life if she survives and her brain damage is likely to be severe.’
These words lingered in my head as I felt your tiny hand wrapped around my finger. You made it through your first surgery that took 12 hours, and you were breathing. The neonatal intensive care nurses and doctors stood by your intensive care crib and watched. You were feisty from the beginning, though your loudest effort to cry could only be heard by the closest person. You had no voice. No one could explain why you weren’t able to cry loudly, except your brain stem was crushed and it was probably the first symptom before you would…pass away.
This very day was the first day of many battles we have faced together. Today as I write this we are going into the unknown again, an MRI tomorrow to see if your brain stem is now failing again.
You are nine years old now…Nine whole years have passed since that day and we have lived in and out of hospital (more in than out).
Will we be having surgery number 76 this week? Will we be having brain surgery number 11? Will this week’s MRI tell us that your brain stem is now inoperable and this is it? How many times have they told me to say goodbye to you my little one? I have lost count. “She is unlikely to make it through this surgery, She is critical. Do you want us to resuscitate? Gather your family.” every few weeks I hear one of these phrases. We wake every day wondering if we will see tomorrow together.
Today we played connect four. Not bad for a child who is supposed to be severely brain damaged. We laughed, we played jokes, we had cuddles and we said I love you many, many, many times. I also watched as seizures took hold of your little body and shook you to sleep. I watched as you sometimes failed to take a breath when sleeping. I watched as the nurses ran to our room when a code was called because a seizure had taken hold of you for the fourth time today.
You have lived a good life. We have danced, we have played, we have worked. We have swum, we have skied in the snow, and we have climbed mountains with you in my arms. Any day could be our last together but we will keep going.
When other people see you, I hope they can remember that to them you may be a child who cannot breathe or eat or go to the toilet without medical intervention. A child in a wheelchair, with tubes in her nose and tummy, and a child who has 27 medical conditions, a child who is palliative.
However, to your mummy you are a vibrant little girl with the spunk of five children your own age, you are clever, you are lovely, you are loved. You are the very reason mummy faces each day with a fierce determination that will never stop.
We make every moment count, every day and every minute is a time that we are constantly told will not last. You are my sunshine, you make me happy every moment of every day. Those days when I have not slept for five nights straight, I can keep going because nothing will happen to you on my watch. You are my breath, if you stop breathing…then so do I.