Last month would of been my nieces eleventh birthday, officially she died of pneumonia when she was six. Her system was weakened by the side effects of living with Dravet syndrome. Her mother, my sister, had another child, her fourth Who has, like her surviving older sister the same syndrome.
There is between us as sisters a gap of ten years, and we have little I think in common. I have memories of her as a baby, of feeding her bottles and helping change her nappies. But we both have given birth to four children, and both of us have offspring with a life threatening conditions.
We have travelled similar roads, with its burdens, worries and concerns, but for my sister it has ended in the reality of losing one of her children.
In the times when our children have had their near brushes with death, for her when her daughters have a severe seizure, or for me when our son has had anaphylaxis ( or fairly recently frequent pneumothorax plus idiopathic angioedema) we call and support each other in our odd ways. We share a dark humour and sarcasm, and treasure the strange similar things that have happened. We joke about all the new people we meet and like in our lives as parents, for instance the fact that the nurses and doctors in our respective A and E recognise us, often by name with a smile. My sister positively loves the time when I took her baby to hospital when babysitting for her, and the doctors asked if I was the GRANDMOTHER, after I assured her that all was okay with the baby, she laughed like a drain at that one.
We talk about the same London hospitals we have visited over the years, but in different departments. We talk in terms of the what, the whys and the hope of improving the quality of life.
We don’t talk about cures, we don’t waste time and the emotional energy that we once had in the early days of diagnosis and discovery. We don’t do the guilt thing, individually we have learned it serves no purpose and is inherently self destructive. You lose your sense of purpose and get distracted by the guilt, and it stops you working on what is needed right in front of you and what is needed in the future.
A life should not be measured in length of time lived, but in its quality, and the love that is shared within the family.
So we all should leave the guilt. It is not our fault that allergies happened. We should focus on the future and teach our children the important things they need to learn.
As a parent with food allergic children that means always looking to the next step to teach our children.. We have hope for allergies being outgrown, but does not happen for everyone. So our children will grow to be adults with allergies, and need the confidence,and the skills to live a normal life with auto injectors in their pockets.
So we go out to restaurants, and travel abroad, as this will give our children the opportunity to see us ask the right questions, and discuss allergy management. We teach them how to read food labels, how to cook and have the fun that is a normal part of childhood. We stress the importance of always having auto injectors with them, because we don’t forget them ourselves and never take the risk of eating outside the home without them.
Some aspects of being a mother are the same worldwide, but being a parent of the individuals we have takes a different path and different thinking. But the end result is the same, we are all mothers, who are blessed with the children they have had.
Happy Mother’s Day everyone!