As I awoke this morning, at first it seemed “normal”. As usual, I was trying to ignore the gentle shaking my body was receiving, in the hope that it would cease and my mind could drift back into a much needed slumber. But as my “normal” morning goes, this gentle shaking progressed to a firmer shake, accompanied by a voice hoarsely whispering into my ear that it was 7 o’clock and time for me to get up.
This 7 o’clock ritual has evolved after many years of being woken at a MUCH earlier time, with no chance of a return to the land of sleep. It may sound like a dream come true for many people, to still be in bed at that time, but as Mama Maremma caring 24/7 for my 13 year old child living with FASD, I am occupied not only with the hands-on care for him during the day, but the end of the day clean-up and preparation for the next day, as well as many other tasks that come with my caring role. This means that my day often does not end until it becomes tomorrow, so the 7 o’clock morning ritual is essential for my ability to function as best as I can for that particular day.
It does not however come easily! My son has a watch to check the time and is asked to stay in bed until 6am, which is a very difficult task for him and still often is a problem. He is then allowed to come out of his room and read a book quietly, whilst eating some breakfast. Sometimes this works well. Sometimes he may just try his luck at getting me up early. Other times it’s disaster: he doesn’t want to read a book; all the books are stupid; he demands a completely different activity which would require me to get up and supervise; he wants MORE food NOW!!
But as I awoke this morning, reality hit as my mind replayed the events of the day before and I struggled to even respond to my son and his constant urging to get up and greet the new day. I remembered my son’s meltdown the day before, that resulted in behaviours that he has no way of controlling because he lacks the ability to do so. I recall the hours of screaming, banging and many other behaviours that need to be handled in a way to try and prevent further escalation and harm. Not only is it mentally and physically draining dealing with the situation as it is happening, but the residual effects are long lasting as stress takes its toll on the body. I look at my son and I remember and feel all of these things….but then I also remember that today is a new beginning for him. It’s a chance to start again, try things differently and above all remember how much I love him.
Love…that is what we live for and what gives us the strength to start again, each and every morning. But even love needs strength and as many caring for someone who is living with FASD know, finding that strength can be very elusive. Many years of searching for something “big” to provide me with that strength has been fruitless and often resulted in a feeling of despair. My husband tries valiantly to reduce the daily pressure that zaps strength from my body, but the reality is, that he earns the income for our family to survive and needs to be away for a significant part of each day. Recently though, I have discovered that there is actually nothing “big” that will miraculously fill me with strength. Instead I’ve realised that it’s the little things that matter and when combined, they have a far greater impact. I have been blessed with these little things from my Community Angels. These Community Angels are everyday people who often have no idea the positive impact they are contributing to both mine and my son’s life. There’s the librarian, who diverted a potential meltdown, by calmly fetching a book from the shelves to interest my son after she witnessed him perseverating on a subject and I was unable to create a shift in his mindset. There’s the Post Office staff who always engage my son in a conversation, which ultimately leads to a subject of special interest to him and I’m able to attend to the task which I went there to do. The staff in the small café who call my son by name, as he proudly enters on his own to purchase a very important cup of coffee for me, giving him a sense of belonging.
These situations are not respite, nor are they a solution to the day to day challenges my husband and I face. However, these people through their actions have provided me with a reprieve, which allows strength to re-build within my mind and body. Strength for the love that enables me to remember that each day is a new beginning…for me and for my son.