What I find with these holidays is that you have far less appointments too and appointments are often what fills up our week and gives us a strong feeling of routine.
The lack of routine has been a bit of a surprise for all of us.
I looked at my diary yesterday afternoon and was astounded to discover that September includes: An MRI, a surgical consultation, a gastro follow up appointment, physio weekly, speech and language, a specialist physio appointment where we discuss measurements and equipment, a pediatric appointment and a TAC meeting.
I feel overwhelmed and unprepared already.
Things that can set my anxiety off are: Amy's tantrums/unpredictability, driving to places, the prospect of parking issues, being late and so on.
I get so bad that it affects my sleep and keeps me up at night.
I want to make lists about lists I need to make, I want to do research so I go into the appointment not completely clueless and so on.
I can't decide if I am looking forward to it or not.
I keep feeling these waves of grief at the thought that the summer holidays didn't go as I hoped it would.
Most of our days out involved inexplicable irritability from Amy to the point of having to constantly change location or activity.
It has exhausted and upset me more than I would have thought.
We had one trip to the zoo where she cried inconsolably the whole way there and all the way around the zoo.
I had tried to be optimistic and kept telling myself "she will be ok after she's had her meds" "maybe she needs a nap, let's carry her for a while" until my reserves of optimism were depleted and I began to cry.
Days out are hard anyway, even just with worries about wheelchair access and packing supplies and ensuring everyone is prepared.
I worry when she cries, will she then choke and be sick and will she aspirate, will she get a chest infection and have to go to hospital?
Usually not, but it happens.
You know when everyone is staring at you because your child is crying?
People sometimes tell me not to care what people think and that they probably aren't staring... but genuinely, we had quite the audience.
We kept the trip short, came home, and were saying we would never be doing that again. We will, of course, because you can't give up and you have to keep trying.
When your stress levels are heightened in this situation and you have exhausted every option to try and diffuse it you can so easily go into panic attack mode or crying mode.
I went for both on this particular trip.
I started to notice all of the pregnant mums or mums with new-borns staring.
All I could think was 1) how much I couldn’t have done that when Amy was a baby and 2) It brought back all my upset about my miscarriages and the troubles I am having trying to have another child.
I notice the children Amy's age fascinated by everything and having a great time and also staring because we are causing so much noise.
I see them have tantrums but it's over things like sibling squabbles or who gets to go where etc. and these problems wash over or if they don't at least it will change in time.
Her irritability at the moment seems to be hindering a lot of things I want to do with her.
It isn't just typical toddler irritability, it is next level and once she is upset that's it, you just have to ride it out or wait for her to fall asleep. It is heart-breaking.
I so much just want her to enjoy life.
So far my reasons why she might be upset are the following:
Communication issues (she cannot speak
Frustration (she wants to do something but can't explain what or her body isn't allowing her to do what she wants)
Muscle pain from high tone, tired (she doesn't really nap well if at all and gets very upset when tired but won't sleep)
Seizure activity (eeg came up okay but had a few scares)
Feeding issues (reflux, digestion issues, 24 hour tube feeds can't be nice on the stomach)
Boredom (typical toddler behaviour?).
It's quite the list isn't it? I think I could probably add more to this and will actually be writing it up on paper to show our pediatrician as these are all things various professionals think may be bothering her.
I am looking forward to getting back into the routine.
Maybe this will help our current situation and hope desperately that next summer is a more memorable and fun one.
When we have a bad day out it either makes you not bother again and get bitter and jealous of people who seem to be having a great time; or it makes you anxious every time you go out and you know your child will feed off that anxiety and most likely end up having a tantrum of sorts.
We have had some lovely moments as well this summer, and indeed some lovely days out too.
I just hope that next summer has much more of that. A happy child = happy parents.