My teacher, my inspiration, my guiding star.

This is Elijah.

My son, my Elijah, was born on 30th October 2013. As the midwife stated, he was just a dot at 5lb’s 12.5 – although I wanted to punch her when she first said it, he certainly didn’t feel like a ‘dot’ as he exited my good self.

I was a blur of confusion, exhaustion, lack of sleep, emotion and everything else as he turned blue and was whisked away while the midwives muttered something about Down’s syndrome.

It was around 3am when I finally climbed into bed, I’d had a shower, which left the cubicle looking like a scene from night of the living dead and I felt like I had been run over. Not much sleeping was done, I know at some point I slept as my sister said I snored, I know at some point she slept as I heard her snore. My head was awash with thoughts. Not all of them good. Was my perfect little man not perfect after all? What was Down’s syndrome – what did it really mean?

I received the test results two days later, it was confirmed he had Down’s. They kept asking me if I had any questions, I had no idea what to ask. It was like the questioning part of my brain had been removed. I decided that until we got ourselves out of hospital we would take one day at a time. Unless life threatening I didn’t need to know about his condition.

I was confused, terrified, happy, elated, and sad all at the same time. There were many times in the hospital that I would sit and cry; tears would roll down my face, exhaustion, the baby blues, the diagnosis, the frustration of being stuck in hospital. I could never really pin point why I was crying but I guess it was a mixture of it all.

My little man was so helpless lying there; he went through so much in that hospital. His feet were like little shredded ribbons where he had blood taken on a daily basis, he was taken to Leeds for heart scans, he had a cannula, was fed oxygen, tubes for feeding, heart monitors. The lot. It broke my heart but his strength of spirit showed me what a little fighter I had. And he deserved a mother who would fight for him. Holding him tightly I would gaze into those dark, dark eyes; they were like pools of water, so blue and so beautifully moon shaped. I could lose myself in those eyes. At times I would miss him, even when I was in the same room as him. Even holding him I couldn’t get close enough to him, it was like I needed to climb inside him. I knew he would change my life; I just never had any idea how much.

After seventeen days on special care we were allowed home, and that’s when our adventure really began.

Since our ‘release’, he has gone from strength to strength and because of him so have I. He is my teacher, my inspiration and my guiding star.

Every consultant wants to tell me how much slower he will be and I want to punch them square on the nose. Slower than who? Every baby is different, every baby develops at their own rate, whatever he does, whenever he chooses to do it, I will be proud and I will hold his hand every step of the way.

My boy has Down’s syndrome and I wouldn’t change a hair on his head. There are many things that I have learned on our journey. At times I get sad when I compare him to ‘typical’ babies. Sometimes much younger and doing so much more than him. But then I think who is to say that if he didn’t have Down’s he would be doing any of these things. No one knows. And for me, if he has to work that little bit harder to do stuff then it is all the more rewarding. Nothing easy is worth doing.

As the months go on I am also slowly learning that all the hopes and dreams and fears that I have for my little boy are the same as any mother. Will he do well at school, will he be bullied, will he be able to stand up for himself, will he get married and most importantly will he be happy? You see there are no guarantees in this world, any mother wants the same thing for her children, maybe I need to worry more than most, and maybe I don’t. No one knows, but I do know that as long as there is breath left in me I will do my best to make sure that he is happy and he achieves his goals.

My son makes me proud every day, every little milestone that he achieves makes me want to burst with pride. Every giggle, every raspberry, every time he reaches out to touch my face and explore this new world, my heart melts.  Through him I have found an inner strength I never knew existed. I am on a mission to show the world that there is nothing to be scared of. His diagnosis is merely a medical condition. First and foremost he is Elijah, he is a baby, and a very beautiful one at that. Through this Facebook page I have met and spoken with some wonderful people, some with first-hand experience, and some without, some taking those first steps on their own journey of the same kind – dipping between the highs and lows and not knowing where to turn. I’m humbled by the experience, there are so many wonderful people out there, and because of my boy, I get to speak with a huge percentage of them.

My boy will never be a disappointment to me; I can only hope that one day he will be as proud of me as I am of him.

My son, my Elijah, my world.


3 thoughts on “My teacher, my inspiration, my guiding star.

  1. Rachel says:

    Beautifully written! I remember so many of the emotions amd thoughts you wrote about from when my gorgeous don was born 12 years ago. He has made me who I am today. Keep writing!


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