All mothers know the tasks that mount around them. The washing, cleaning, feeding and organising combined with the consoling, negotiating, teaching, guiding and disciplining of little human lives. In the early days this is a 24/7 job with many, many months of sleep deprivation as mums are on call day and night to feed, change and soothe. This is a labour that can only be explained by love when you consider the enormity of the task at hand – in what other circumstances would a sane person agree to go without a full night’s sleep for months and sometimes years?
This is what mothers do and when your child has some special need those early days of extreme care extend out for longer and longer and, in some cases, never end. I recently read an article about a mother of a child with a severe disability. She described having had three nervous breakdowns through the sheer lack of sleep that her daughters care required. Remember those months of night feeds, nappy changes, inconsolable cries that pierced straight through you and had you marching to the orders of some random and mysterious forces beyond your control? For some mothers with children who have special needs there is no end in sight for that ‘phase’ and it is a monument to love itself that any woman has managed to live life in this permanent haze of service to their children’s needs. And yet many have for many, many generations.
My Nan did. Oh, if only I could talk to her now and ask her how she did it. She had five children to raise, one of whom was disabled due to a lack of oxygen at birth. I don’t know the day to day reality of her life when her children were young but I have heard she carried Graham on her back for the first four years of his life just to be able to have her hands free to attend to the other children and household tasks. She had no car and walked to the shop each day for groceries – not a short walk and up hill on the way home. I used to do that walk with her and whinge the whole way some days. Today when I drive past that Street and think of Nan I marvel at her sheer determination. Is there anything more powerful and stubborn than a mothers love? I doubt it.
Many years later when my Nan is no longer here to share her stories I find myself with a child who has special medical needs. The journey has been full of challenges. I think of the months and months I had to wake every hour to check his temperature, change his nappy, strip the bed and wipe away the excess wee (the medication would make him wee through a nappy in an hour) and more often than not the vomit. No matter how I managed his medication he still vomited, he still urinated excessively, he still needed me on an hourly basis and we still ended up in hospital. Months stretched out around me in a fog and at times along the way I became him and he became an extension of my ability to keep him here. And I became a mother who is perpetually exhausted, worried, beside herself and broken in half by the guilt and worry of whether I could do a good enough job to get him through this journey that his DNA and blood cells have sent us all on.
Today that care is less but still we wake him each night and give him chemo, we change his nappy and yet still he wakes early having wee’d through the three nappies I have put on him in. And still he wakes early and I have to strip the bed, wash the bedlinnen and his pjs, dress him in fresh pjs and try to conjole him and his brother (whom he has woken) back to sleep.
And yet, this is what we do, for love. This is the work of motherhood. Sure the wages suck but is there anything you wouldn’t do to see your child survive and hopefully one day thrive or at least be the very best that they can be given the cards that life deals us and them along the way?
One day I look forward to burning his mattress and the layers of medication, urine and vomit that it has come to represent in my mind. One day we won’t have to give him chemo. And maybe one day in the very far off future we won’t have to go to hospital to check his blood. We are one of the lucky ones (though nothing is guaranteed).
The truth is, even if I had to do it for the rest of my life, I would, as many mothers do. I take my hat off to them because it is just exhausting and soul destroying work at times. But a mother’s soul is gladly given up for the love of seeing her child grow or develop into the potential that only a mother truly sees.
The truth is, if I had to do it the rest of my life I might have a nervous breakdown or two myself and there are many, many days when I just want to run back to the predictability of working and put the boys in full time child care. Ah, to have a ‘To Do List’ that is achievable, ticked off and completed at the end of the day – not to mention a pay packet and a sense of self esteem.
But that is not my journey and that is not the journey of many much braver and more compassionate mothers than I. These women are silently struggling for a brighter future for their children no matter what it takes and they are a source of endless inspiration to me.
This Mothers Day I will be thinking of my Nan and all the mum’s who continue to selflessly give themselves over to the exhausting job of caring for their children no matter what.
Stay strong and take time out to remember that you are worthwhile despite the invisible jobs that you tirelessly do. Every moment we get with our children is precious and the labour of love is rewarded by the richness of their personalities, their smiles, their laughter and their simple and joyful presence in our daily lives.
Love is all there is. x