Some of the most heartbreaking comments I have ever read in support groups are those written by parents who feel completely devastated at the mothers and fathers they have become due to their diseases.
It fills me with deep pain and empathy.
I have often been torn by the question “am I lucky that we didn’t have children?” Or “is it a terrible loss that we dont have children?” The answer can change daily.
I had not even been able to consider having children before I met my husband, which came later in my life for us. Until then I had put all my time and energy into my career and university studies. I enjoyed what I did and where it had taken me.
After my husband and I realised that we were going to make a happy life together I was in my late 30s and my illnesses were getting harder and harder to disguise and ignore.
And the rest is history…
Many times in the past several years I have asked myself “what if?”
I believe that my husband would have been a wonderful father when I see how patient and considerate he has been caring for me all these years. A natural born father. Nothing seems to upset him or distress him. He adapted quickly to our changing lives. Better than I did.
Me? I often wonder what sort of parent I would have been even if I were well; let alone how I am now!
I think it would have been a lot more challenging for me compared to my husband as I feel a great deal more stress and guilt, and I didn’t have the strongest role models to learn from.
However today, as I lay in my bed, riddled with pain and completely fatigued, I can’t help but feel extremely grateful that I didn’t cause myself further emotional pain by being an ill mother.
Each person’s journey as a parent is unique and I know that there are amazing mothers and fathers who are chronically ill. But I think that knowing myself as well as I do, I am sure I would have been riddled with far too many self doubts and insecurities. More than any child should have to endure.
As I consider how limited my physical abilities have become, it would have saddened me to not be able to hold or play with my young child. The burden on my husband would have been mammoth.
Neither of us have extended families to help us as we try our best to cope as a chronically ill couple, therefore I am convinced that we would have really struggled parenting.
As the years pass and my health slowly worsens, I have often wished my husband had the joy of a child to show him what a remarkable man he is and reward him with a sense of achievement and family; rather than have to see his wife suffer and battle. I guess I am assuming a child would help provide the joy that I can’t always give him.
But I know I would have hurt every time I missed an outing, a birthday or a significant event. I would have ached every time I couldn’t comfort, encourage or console my child, due to my health.
I take small comfort in knowing that my health does not impact on many people and I work very hard to contain the amount of inconvenience that I cause others. In that sense I feel I will be able to balance any future regrets I might have with the knowledge that this is perhaps the best choice for my circumstances/needs and for those of a young child.
I know that for those who became ill after having had children, many of those children benefit from the wonderful lessons that health challenges teaches us about love, coping, compassion, empathy, independence and gratitude, but I also hear the emotional pain that each parent has expressed, and the daily struggles that chronic illness gives them.
Some marriages don’t survive the pressures of disability and break apart; it is truly heartbreaking indeed. The family unit hurt even further by things beyond ones control!
I have always said that there are no easy decisions when it comes to chronic illness and Autoimmune diseases. This is another example for me. I will have to live with the choices made and it is my dearest hope that no matter what my fellow Autoimmune brothers and sisters choose for themselves, that they get all the love, respect and support they richly deserve.