October is Down syndrome awareness month. Our campaign this month is called ‘A Day in the Life’. Throughout the month we will be sharing blogs from our community about what it’s like having someone with Down syndrome in their lives. Today we share Elijah’s story, written by mum, Wendy.
Before I start, I think there are some important things you should know. I had no idea before Elijah was born that he had any sort of disability, I refused the tests. I knew my age would put me in a high chance category and I knew I was going into this as a single parent. Another point to mention is that I was one of those people who had terrible, negative misconceptions about Down syndrome. I was terrified when I found out I was having a boy, I just couldn’t see myself with a boy, imagine I had also found out he had Down syndrome, I could have easily been swayed into making a decision I regretted. I cannot tell you how much that thought now breaks me. Elijah is the best thing that ever has or ever will happen to me, without question. He is the reason I breathe, the reason I smile, the reason I am truly alive.
My son, Elijah, will be 8 next month. 8 years with my little boy, they have flown past. How do I consolidate those years into one day….? How can I possibly describe the utter joy that this tiny human brings to my life on a daily basis…? I have no idea, but I will try.
I think the only way for you to get a real feel for what my life is like, is to give you snippets from various days that make me smile.
Elijah has always been pretty good at sleeping, he currently wakes between 6 – 7, although on occasion he will sleep until 8. He sleeps in my bed because he is a bed thief, actually thinking of renting his room out as it never gets ruddy used.
I have a king size bed, Elijah thoroughly utilizes that space but kindly leaves me an edge, although he will use my face as a pillow at some point. He snuffles his way through the night, cuddling into you, if I cough, he sits up still asleep and asks if I’m okay. The other morning, he woke up at 6, I was not ready to get up. Elijah realised this and slid out of bed, Shhhhhing loudly so as not to wake me.
I knew it was a mistake not getting up with him, but I needed a few moments to adjust my eyes to being open. Eventually he came back up, and knocked loudly on my door shouting MummEEE MummEEE. He came in looking very proud of himself and took my hand and said ‘eggs downstairs’. Yep, he had tried to make some eggs for himself, luckily only the one egg was harmed in the cook off and most of it had landed in the pan, unlike the first time he tried this when three eggs were all over the kitchen and I found the shells in the kettle. Little schnitzel.
Elijah does have a few areas of delay, the main area of delay is his speech, so he tends to over accentuate the wrong part of a word and he can be pretty hard to understand, the words he can say aren’t clear. He also has his own versions of how things should be pronounced, Elijahisms if you will.
One of last year’s obsessions was Numberblocks, which was great! As a result, he is fabulous at counting and he can do sums including some times tables. In Elijah world the English language is a lot simpler. Thirteen is threeteen, fifteen is fiveteen and so forth, twenty becomes two-ty as such twenty-two is two-ty two, it makes my cheeks hurt from smiling.
His current obsessions are Paw Patrol, Jack and the Beanstalk and all the traditional fairy tales. But Jack is his favourite. Everything is a Bean-talk or ‘agic ‘eans, which he will pretend to throw out the window with force showing some great acting skills. Out and about at a local theme park, one of the ride operators had a name badge on. His name was Jack. So that was Eijah’s favourite person that day. ‘Ack and the Bean’talk’ he would shout whenever we went past the poor lad, but he always waved and smiled fondly.
One fairy tale moment that melted my heart happened a few weeks ago. I have long, blonde hair. Elijah often points at my hair and says ‘ dilocks’ as in Goldilocks, but this day was different and I was struggling to understand what he was saying. I finally worked out he was saying ‘hair down, hair down’. ‘Like Rapunzel, baby?’ I questioned, he nodded and tapped his chest furiously while saying ‘ince, ince’. I looked at him and said ‘baby, are you my Prince?’ ‘Esss, Esss’ he said nodding, and he’s right, he is my Prince, my impossibly handsome, kind Prince.
I stare at him all the time, enchanted by him, I cannot believe how beautiful he is. The freckles on his face are so prominent it makes me melt, his eyes have a magical sparkle to them, his little button nose is just perfect and his smile is like rainbows and sunshine have collided with moonbeams. I’m in awe of him. I tell him I love him about a hundred times a day, it’s like the words just fall out of my mouth and he gets kissed at every opportunity. Brushing his teeth must kiss his nose, watching TV must kiss his head, lifting him up must kiss his cheek, any excuse, I actually can’t stop myself.
Don’t get me wrong, we have our bad days, Elijah is as stubborn as they come, if he doesn’t want to do something there is absolutely nothing you can do about it. He can get frustrated from his lack of understanding, as can I, and he can be a giant pain in the bum. Like most kids. But the good days by far outweigh the bad.
I think of my life as having two parts, pre-Elijah and post-Elijah. They are non-comparable. I had fun before Elijah, I enjoyed life before Elijah. Now though, now I live, now I am truly alive and without him I would cease to exist.
My son, my Elijah, my world.