I am a mother of six children aged between 25-years to 15-months. Two of my children are disabled one with mild autism and moderate learning difficulties. The other, severely disabled with a rare chromosome disorder; Patau Syndrome; a life-limiting condition. I am a full time carer, a wife, a closet poet and blogger www.bad-mum.com.
I often find myself in a trance, life just seems surreal. I look at my little prince and think to myself, this isn’t real, ‘you’re going to be okay, you’ll stand up and walk, you’ll run and play’.
Then his feeding pump beeps, or his saturation monitor alarms and the reality hits me; that this is our life.
Everyday is adventurous in our household, we never know what’s going to happen. It’s totally unpredictable. J-Lee, my 15-month-old keeps us on our toes. If it isn’t epilepsy or an apnoea it’s respiratory distress. He rapidly declines from viruses and infections which lead to days or weeks in hospital. His ambulance directive is like a Oyster card with the amount of times we call the emergency services.
J-Lee is a frequent visitor at our local hospital, if we could earn air miles for visits our rewards would be phenomenal. Instead, we are greeted by familiar faces and bed numbers as we’ve had admissions to every bay on the ward. He is renowned for his hexagon recording tiles with songs for all his daily cues, the green tile is his ‘change your nappy song’ and the white tile his ‘bath-time song’ not forgetting his conspicuous silver and gold fire blanket that creates an explosion of sensory input for him; and a loud distraction for anyone else in his presence. I always carry a spare to gift to another child.
J-Lee’s life has always been a fight and filled with surprises, he was born not breathing, with 6 fingers and 6 toes on each hand and foot, duplex kidney, heart condition, deaf and without any eyes, yes that right; bilateral anopthalmia. But JamJam being full of surprises miraculously acquired hearing at 2-months and grew EYES at 7-months. He opened his eyelids for the first time ever and revealed two small eyes, going against his diagnosis confirmed by two different hospital specialists.
He just keeps defying the odds. His smile captivates hearts, his rhythm and love for music is a testimony to how much he enjoys life. He is such a joy and an amazing addition to our family.
So how do we cope? How do I stay sane with so much going on? Caring for JamJam is challenging. I also have my very energetic 2-year-old, 10-year-old daughter who is currently in a popular British soap and has a full on schedule with work and school, a thirteen-year-old computer programming son and 19-year-old creative, autistic daughter.
My faith in God and gratitude take me through everyday. I purposefully and intentionally think of a minimum of three things to be grateful for each day. I also encourage my children to do the same, honing in on positive self-talk; especially in difficult moments really gets me through. For example, ‘my son is in intensive care; but he is still alive’, ‘my son is visually impaired, but he has eyes’, ‘my 2-year-old will not go to sleep and it’s 10:30pm, but he is well and happy and will now sleep through the night!’ I remind myself that I’d rather have to deal with all the stress that comes from parenting than not to have to deal with it all. In other words, I’d rather the screams and defiance as opposed to the silence or reminiscent reflections of what they once sounded like because they’re no longer with me. I am so thankful for all I have because to me; there’s always a reason to smile. I know this way of thinking isn’t for everyone; but it sure does keep me going and gratitude is my secret to staying sane through my challenges, what’s yours?