But I am finding as Amy grows up that there is more to celebrate and more to be excited about.
Sure, new challenges appear such as finding appropriate changing facilities, and things like strangers not being necessarily understanding.
But we are seeing a calmer more tolerant Amy, and day by day we are figuring out what is troubling her and finding new ways to try and help.
You'll have the days where you win amazing prizes in the school fair's tombola, the days where you have a family meal and she stays happy the whole time, the days where you make precious family memories.
But equally you will have the days where you inadvertently pull out your daughter's GJ tube, or your daughter has her differences loudly questioned many times at a trip to the park.
Today actually was all of those things!
Each day is so varied and full of different occurrences... you could never call our life boring.
You'll have the days where all of your calls are returned, you have a successful shopping trip with minimal meltdowns and apt parking. But you'll have the days that as soon as you get a moment to yourself you fling yourself dramatically face down on a pillow and let out the loudest, ugliest cry you can do.
It's all about getting a balance, and a bit of perspective.
When you have a child with a disability you can often spend your life second guessing their every movement.
You can find yourself checking their temperature constantly, panicking over a viral rash and thinking it could be something worse and so on.
But I think when you've seen your child fight for their life on more than one occasion you'll be predisposed to paranoia and anxiety.
You've come close to goodbyes before and you'll do anything you can to not have it happen again.
Any day where you aren't calling an ambulance, or waiting for your child to return from theatre, or not stuck in hospital is a good day.
Even the days where you feel like it isn't.
I recently started to try and cultivate some new hobbies.
I started geocaching (which is basically treasure hunting... if you've not heard of it I highly recommend it!), rock painting, mystery shopping (a handy little earner for those not so busy days) and have also signed up to volunteer at a local special needs school.
I feel like some days we are just passing the day any way we can to get to bed time because it can all be so draining.
Or I will spend a respite day frantically trying to complete every single chore, knowing that when I pick her up it won't be as easy.
Sometimes, pointlessly painting a rock should be more important than putting washing away.
Sometimes, you can collect prescriptions AND go on a treasure hunt.
Our weeks can be such a blur of appointments, therapies, phone calls and paperwork... that really, we need to just step back and admire the beautiful blossom trees.
Or sing that one extra nursery rhyme before rushing to the school gate in the morning.
We need to collect these little nuggets of pleasant memories and build up a huge collection so big, that those bad days don't seem so bad.
I recently became a bit poorly myself and had left it so last minute that there were no GP appointments left.
Furious with myself we attended the out of ours doctors and I got the antibiotics my body had so desperately been crying out for for days.
Why is it that with our children we would immediately fix the problem, but when it is ourselves we have no sense of urgency at all?
Without us, there is no them.
It was an important lesson in self-care... one that impacted my one night with Amy's dad where she was at respite.
So, in short; stop sometimes.
And breathe in all that is good in your life.
Exhale all that is bad.
Look at those photos that make you smile.
For me right now it's the one of Amy very purposefully interacting with our dog Monty.
Every time I see it I think wow, how far has she come; and how amazing are dogs.
It makes me think of my family and everyone in our lives and take stock of actually, just how lucky we really are.
Those moments are why I am here.