Peekaboo into the mind of a Special Needs Mum

Here is a sneak Peekaboo into the mind of a Special Needs Mum.

First of all, I did not choose this road, the road chooses me, but I am glad it did, maybe fate sees the strength in me or the compassion, empathy, and patience that I never knew I had! This is what I keep telling myself, ‘You’ve got this’. Well, this special journey has brought out all the above and more, in fact much much more than I anticipated!  We all have little or big journeys in our lives, a story to tell, all unique in their own way. “So, here is a little drop in the vast ocean of my story”.

Please don’t mind my disheveled look, the mixed buttons on my shirt, the loose fashion on me, or the grey hair sticking out so drastically, I promise that I will color it when I get the time, I just need to run over to Home Bargain and grab myself a color box, and when the window of opportunity arises, I will slap it on with my gloved fingers and hope for the best!! Which color do you think I should do, purple?? Anyways, back to the main subject.

Just so you know, I have an elder son who is, by the way, 31 years old. My first marriage broke down and I was living the single life for 12 years, and actually living by the mantra of ‘Flowers’ by Miley Cyrus! Fast forward ahead in my life, met my second husband, and we wanted a bairn of our own (note the bairn-result of my obsession with Catherine Cookson and the old era), but was told due to my age (I was 38 then), that it would be impossible to get pregnant. We tried, like hell we tried (be gone dirty minds!), but nothing. When we finally gave up, and went about our mundane life, lo and behold, I was pregnant! At this rate I didn’t know whether to laugh or cry, I was delirious! Anyway, I will not bore you with the details, but I know you know how it went!!

I was huge at only 8 weeks, my GP and midwife were concerned, and went through various tests, but the results were borderline, they couldn’t give me a clear result of what is happening, just that they were concerned at the size of my baby. They did mentioned down syndrome but still with the notion that they were not sure at all. To know 100% of what is actually happening, I was told that if I agree, they could do a test called Amniocentesis (https://www.nhs.uk/conditions/amniocentesis/). This test can be quite intrusive and might even result in a miscarriage. They traumatized me at miscarriage, and in no way am I putting my precious little miracle to fail before it even started. So, a vehement NO from me.

The journey ahead, as you can imagine, was turbulent but exciting. When I finally held him in my arms, my little precious boy with Down Syndrome, I was scared, I was worried, not about what I needed to do, the care and attention, but I was scared of this world, and how it would treat him. I cried for days with the feeling of helplessness, but even at just a few days old, he offered me comfort and strength and slept peacefully while mummy heals from the C-Section.

He was not tiny, as you can imagine. And remember, the last time I took care of a baby was in the 90s (my eldest son was born in 1991), so I can correctly say that in this modern world, we are in right now, I am a new mother, learning new things!! Boy, it was indeed overwhelming!!! But I was determined to know and learn and adapt myself like a warrior to protect my special child. Come what may, nobody is going to get past me! So, begin the process of unknowingly training myself physically and mentally to be his Special Forces Bodyguard, a hands-on Carer, a never-giving-up Researcher, an Advocate, and above all, to be His Voice.

My past career was in human resources, taking care of my company’s workforce. And now, I am taking care of this precious cargo, and loving every minute of it. Between the diapers, pooping, and various medical conditions that came along, and at times, mind you, I felt like giving up, but his smile, and those oval hazel eyes, gave me more motivation to carry on even stronger. I looked at him, and he is always happy, his little world is full of smiles, and he finds joy even in a minuscule little object like a washing peg!!

Hubby and I and just about anyone who meets him, are taken in by his charm! His giggling and laughter are pure music and sometimes I even wonder if he knows how to cry. We would hear him cry only when he is being pricked by a needle for his scheduled tests. He hates hospitals and would remain very still if under the saline drip. His fears are my fears. Whenever he is ill, I kneel down and pray to relieve him of the pain and give it to me instead.

But during all the many hurdles medically, he always bounces back happier than before. It’s as if he forgave the pain he went through and took life just the way it is, to be lived to the fullest and only see the beauty and joy in it. Sometimes I used to wonder, what the world would be like if we all have the same attitude toward life and people as he does. Let us close our eyes for a moment, and imagine what the world would be like if our minds and attitude is as simple and straightforward as his mind is. Most people would just say, ‘stop looking at the world through tinted glasses.’ Let me leave you with the thought of ‘what if….’.

Cheers and much love

Zandra