Being the parent of a child who is both medically fragile and has special needs, it is sometimes really hard to see the silver lining in life. While some days things are great and you can smile and laugh and almost feel like a normal person, other days you just fall into a well of confused self deprecation where it seems there is no end in sight to the monotony and drudgery that has become your life.
It makes it all the harder when you are constantly seeing reminders of the life that you're missing out on... family and friends with their 'normal' children who are running and babbling and playing... and it really drives into your heart that your child is just not the same as other children.
Last Friday for instance... I found myself babysitting my niece and my two nephews. To put this in perspective, my niece is 8 months older than my oldest child. My oldest nephew is 4 months older than my middle daughter, and my youngest nephew is 4 months older than Nicola.
Given their close proximity in age it's only natural that the children are all friends and play well together... that is, all except Nicola.
Where my nephew is off running and playing with cousins and siblings, babbling away, eating everything in sight and generally just being a totally typical terrorising toddler, Nicola is completely immobile. She doesn't even sit unaided. She doesn't talk, she doesn't walk, she doesn't run... and the limit to her interaction is, or at least it was, crying at anyone that so much as breathes in the same hemisphere as her.
Seeing him, and every other toddler around us, meet their milestones, take their first steps, say their first words etc, while we struggle to achieve even the tiniest of tiptoes forward is, to say the very least, heartbreaking.
Don't get me wrong, I don't begrudge their happiness with their healthy children. Not at all! And while I wouldn't give Nicola up for anything in the world or change anything about her, I wouldn't wish this kind of life on anyone, least of all on the days that the silver lining has gone an ugly shade of black.
But every now and then, through the darkest, cloudiest and most miserable days, children like Nicola have this way of surprising us... just when we need it most.
About a month ago we had a massive breakthrough in her communication... she looked at me and she said "Mum. Mum, Mum, Mum." Of course, to say I was ecstatic was the understatement of the century... until we told her speech therapist who heard a similar sound and told us that it was just a random convergance of sounds made as she chewed on her fingers... and it wasn't really a word at all.
One step forward, two steps back.
But then, last week, something amazing happened. It was clear, it was concise and it was almost precise. She picked up her hand and she waved.
Ok, so she's almost two. I get that... waving for a two year old isn't a big deal...
But for MY two year old, it's a mammoth step! It's phenomenal! It's more of an achievement than man's first steps on the moon or the discovery of the theory of relativity.
MY two year old daughter waved! She picked up her hand and waved! She communicated with me!
Between the tears I waved back, delighting in the furious little movements of her hand pummelling up and down and the gorgeous smile on her face, the pride in her own achievements mirroring the pride I had for her.
Thinking quick I whipped out my phone and started the video recorder, getting a gorgeous clip of her waving and smiling at me. Then, just was I was about to stop, she did something else.
She responded to my waving to her by signing 'good waving' to me in Makaton.
She used her finger instead of her thumb, and it wasn't entirely as precise as it could have been, by the message was so clear even my father knew what she was saying. "Good waving Mum. I'm proud of you!"