Too much time can be spent either ploughing through the day and going through the motions i.e. get dressed, splints on, feed change, meds, hoist into chair, drive to school, collect meds, attend an appointment after school, get home for standing frame and bench sitting and so on.
That, or we grind to a halt burnt out. YouTube goes on, we crash out and I dwell and wallow over how hard things can be, and how many challenges lay ahead.
The stresses and strains start to show and each day feels like Groundhog Day.
Lately I have been absolutely bursting with love for Amy. She makes me so proud every day.
I had a moment of introspection yesterday where I reflected on a few years ago when Amy was a baby.
I was so immersed in the trauma of her birth and getting to grips with tube feeds etc. that I feel like I missed out a lot on the good parts.
Too much time was spent trying to process the situation. I look back at baby photos and they're a blurred distorted memory.
They say life is too short for regrets, and to treasure the moment... but I do wish my brain had allowed me to enjoy how tiny she was and what a truly special time it was.
I feel like now I am making up for this. The old challenges are replaced by new ones, but for the first time I am starting to feel a lot more optimistic about our future.
For example, in the morning when I prepare her feed she will watch me patiently whilst playing with a toy.
A year ago I would be frantically trying to prepare the feed as quickly as possible and get myself all flustered because she would cry and cry wanting one on one full attention. This is a huge achievement.
She is more interested in the world around her and has learned that sometimes we have to wait. Her attention span has increased and she is starting to show that she understands some of the things I say.
My favourite thing is her new habit of doing what I call her royal wave as we walk down the hospital corridors.
She pops one arm out and waves to passers-by and I ask her "wow, are you waving to everyone? Clever girl" and she will giggle.
I will say to her "Amy... do you want to watch some videos?" and she will cheer excitedly knowing what's coming. What a star.
Tactile play has never interested Amy a lot. She craves high level stimulation such as upbeat constant music, light up noisy electronic toys, and me singing specific songs over and over.
It can be very head ache inducing and I have spent many days desperate for just a moment’s silence. Well recently she has taken more of an interest in feelings different textures.
She recently cuddled a polar bear teddy in the garden centre. Her face lit up with joy and she instantly embraced the teddy, pulling it in closer to her. I could have cried.
It's amazing how something we take for granted in any other situation can actually become a HUGE development for our children. I learned very early on to celebrate EVERY little thing Amy does.
From the moment in NICU when we saw her finger move for the first time, to the time she learned to hit a big mac switch by herself - all of these things require a lot of extra energy and thought than it would for someone able bodied. She's amazing.
And you admire their beautiful angelic face at rest, breathing... regulating their temperature, tolerating medicines and food... doing just so much; so many things that at one point weren't guaranteed.
Every night when I go in to do her last meds for the day I smile to myself... all of the chaos from that day is gone.
Tomorrow is a new day... probably also of chaos... but we'll get to that point where we can all just relax and reflect.
I was in a coffee shop at the weekend and Amy was having a few sensory issues. I was trying to settle her with toys, songs and iPad and she did me proud... in the past she would have got louder and louder until we had to just leave... but she coped.
We managed to stay there relatively care free. The waitress said "would the little one like anything to eat?"... I even impressed myself with my answer.
By wording it differently the waitress was amused and impressed and we had a candid, happy conversation about Amy as opposed to the usual "will she have to have the tube forever" and so on.
I love the days where I can put a positive spin on it.
So often my mood hinges on Amy's mood. If she's not slept... I haven't. If she is upset... I am upset. But when she's happy... I am on top of the world. Her smile really is infectious.
I smile to the stranger, pleased that we have added a positive snippet to their day. I push Amy's wheelchair a long and I feel smug... this girl is my daughter, look how amazing she is.
I feel so cheesy when I say it... but a sleeping child... and a laughing child... really is the best thing in the world.
Even better than that... is seeing a child that has been dealt a tough hand... finding a way to communicate, interact, and enjoy life.
Whatever my purpose is on this planet... I know that with an Amy by my side I can achieve it. I am truly the luckiest girl in the world.
Think of the things you are grateful for and hang on to that tight, it will get you through.
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