It’s so easy sometimes to let the overwhelming busyness of life take over. Some days it feels absolutely unrelenting. My goal each day is to have at least washed the dishes before I go to bed so that the house is a bit nicer in the morning. Such a basic thing yet somehow sometimes so hard to achieve!
I think those dishes represent something a bit deeper - a need for a feeling of control over life. Life with a medically complex child can be so unpredictable and sometimes being vaguely up to date with something as mundane as housework helps tether me to reality.
I have this habit of attaching greater meaning to things. For example, ducks represent freedom to me. I will never forget being told to keep talking to Amy when she was in NICU ventilated, in a coma, and hypothermic. I begged for her to get better. Told her about all the great things in the world. I promised to take her to see some ducks and feed them. (Which we do. Usually to her disgust these days!)
My most recent metaphor is acorns.
. I absolutely love autumn and all it represents. The beautiful colours, the harvests, the pumpkins. Autumn to me represents comfort. Blankets, coffee, TV, home, peace. Home is so important to us all and nothing will make you appreciate it more than frequent hospital stays. There is nothing like your own space and your main people.
Acorns to me represent collecting happy memories and stashing them away to help you cope through harder times. I suppose I got this idea from squirrels gathering food for winter.
If truth be told; life on a day to day basis can be very stressful for us. Amy’s moods can switch quite suddenly and she experiences most moods in extremes. It means that happy moods are an absolute delight to behold. You can’t not smile when she smiles, and her laugh is infectious.
Unfortunately though her cerebral palsy comes with chronic pain, dystonia, seizures, gastro problems, learning difficulties, and frustrating communication challenges. When she is angry she is very very angry. All you can do is stay nearby and try to prevent her from injuring herself (or indeed those around her).
Her anger and sadness can be incredibly intense.
During those times I remind myself not to take it personally - she does love us - this isn't about us - it’s about her right now. We ride the storm together, I regulate my breathing, I count in my head. I wait for the right moment to try and comfort or distract her; always gauging the best time to give her space or be close to her side.
I read once “Your child isn’t giving you a hard time, they are having a hard time.”. I also read that all behaviour is communication. During these times she is telling us something, and we need to do our best to try and ascertain what it is.
During these turbulent moments I refer to my acorn collection. The day out last week with fellow HIE families. A beautiful adapted building with hoists, ball pits, slides. Amy was really happy during this whole session. Unfortunately the hours following it she was very distressed and we couldn’t ascertain why.
I clung onto the success of the morning - we have previously had to vacate special events early so this was a huge win for all of us. I think back to Friday last week when Amy could access our front door for the first time ever - her laughter and excitement reverberated throughout the house as I pretended to knock on the door to visit her.
I think of when we find a new song she loves and how we all sing it over and over to keep the smiles coming.
I think of walking through the woods with my dog and my best friend and her dog; knowing Amy is safe and happy at school, knowing I’ll make a nice meal for tea for Phil and I, knowing that this too is normal everyday life - not every moment is paperwork, appointments, bad news, medicine, advocating, washing etc.
A bad hour is not a bad life and whilst there will always be challenges, you will always be adding acorns to your collection too. Amidst the absolute chaos that is my life, I know that I am so blessed with my amazing family and friends. I have the most amazing partner, beautiful and clever daughter, lazy and gorgeous dog. I try to never lose sight of the incredible things life has to offer, even this year when I have grieved the loss of a best friend and also our baby that was due in October. We must try to live our lives to the fullest even if some days that looks like snuggling up on the sofa and doing nothing and on other days it looks like a hike in the wilderness.
Next time you feel the weight of the world on your shoulders just remind yourself how far you have come. Take a moment to reflect on all of the amazing things you have to be grateful for. This moment will pass, and better moments are ahead. Appreciate the small things, be kind to others, tell those close to you how much you appreciate them. Take a deep breath, refer to your metaphorical acorn collection and take solace in the comforts autumn has to offer.