Welcome to another guest blog post.
You may remember Helen from Part One, which was about her daughter’s diagnosis with cystic fibrosis. Have a look back to remind yourself with the story.
In this post, she touches on feelings and relationships. I can personally relate to most of it.
Hope you enjoy the latest installment of Helen’s story!
When our daughter was diagnosed with CF, I felt that I was impacted upon the most…can I say that? Can I be that selfish… I mean…I felt that I owned the disease, I OWN the disease. I am the Mother. I am the keeper and the protector. This was of my own choosing as my daughter didn’t have a voice and a choice, and still doesn’t. And, until she does, all her hurts are my hurts, her successes have become mine….and sadly her failures too…her lungs have become my lungs….
We left that hospital after the diagnosis with incredibly heavy hearts, a head full of information and fists full of literature. We went home to my Mother’s house expecting tea and sympathy, which we got, in moderation. I didn’t expect everyone else to be grieving too. And I soon found that I was consoling everyone else. My Mother, my sisters… all except my husband and my son. Ben dealt with the disappointment as he has dealt with other disappointments in his life. He didn’t say much at all and spent weeks processing the information whilst rubbing my back at the same time.
Grief is a very personal thing…a lonely place….a bleak club with a free membership.You don’t really want to share it with people who haven’t grieved such a loss. How can they possibly understand? And to me, this wasn’t about the death of somebody. This was the death of so many other things….expectations, lungs, pancreas…This was about sitting back and watching someone slowly die of something, and being powerless to do anything about it.
You cannot PASS GO with grief. It’s a rite of passage. You have to swim through it., and you have to stay afloat with a child that needs you to be seriously afloat….not just floating really….SWIMMING….with a team…crossing a channel…but a REALLY BIG CHANNEL!
I read somewhere that having a child with CF is like watching someone drown out at sea and you cannot get out there to save them. It was the death of my expectations. The death of the constant cravings of being a normal family despite our dysfunctional past. The death of having the luxury of 2nd child parenting confidence that I was so looking forward to.
We now had to include a lifestyle of medication into a family that never took pills for anything and abhorred chemicals. We had to change our philosophy on diet and turn our back on the concepts that salts and fats are bad for you (they were actually going to save our child!) all without influencing and compromising our first child. (Speaking of which, my heart grieved for Christian and the new kind of sibling rivalry that evolves with having a sick sister…..and the grieving list goes on….)
This grief was to take place in a small country town, miles away from home, amongst strangers and in the spotlight! We were a very private family. We have grown up this way through our own families…protective…insulating. To have ourselves exposed was awkward, embarassing…vulnerable. That was to, and had to, change. We had to let others in: specialists, psychologists, social workers, friends….strangers.
The first few months after diagnosis (“AD”..I call it…there is a definite “before and after” diagnosis on our timeline) was wracked with paranoia and isolation and hysteria. The isolation was devastating. I was too scared to take Asha to Playgroup. I honestly thought it would be at a great cost to her health if I did. And when I did finally go, I still felt isolated because every lady there had incredibly healthy children and I did NOT. I felt that I was running a completely different race to everyone else. That added more salt to the wound and a sense of failure had set in. I had to explain my “story” numerous times to people….people who asked after Asha…my husbands work colleagues, the green grocer…..my friends. The hardest thing was to console my closest friends, those that knew that I had already fought hard, to be me and still had such a battle ahead. To hear them cry and know those tears are for you, and your little girl are the most devastating. I mean…how do you “hold” them when they are on the phone?
I did manage to secure an email address of another mother who also had a child with CF. I began to write to her. She was an expatriate living in Zimbabwe. Although THAT is another long story, her emails are what got me through the early days especially. I longed for her emails and they brought me a huge relief and validation of my own feelings, which were confusing and confronting. She became very close to me and knew exactly what to say. There were no emotional boundaries with Trilby, and I believed, and still to this day believe, that we can cross them with ease with an incredible sense of trust.
I liken my relationship with Trilby to a buddy breathing system that deep-sea divers have. You are in the abyss…..and breathing easily…..knowing that your dive buddy is there, with a regulator…in case you can’t breathe. There were many times in the early days when I couldn’t. No one knew that except Trilby, not even my husband. The beauty of our relationship was that we both grieved together, like a Venn diagram…..on our own but intersecting in the middle…..
TO BE CONTINUED. Thanks Helen!