We all need time to reflect, to not feel on edge, to immerse ourselves in something other than the world of additional needs.
Tube feeds, speech therapy, physiotherapy, reading medical journals, indulging in forums, collecting prescriptions etc. can take over, and they do.
These days I seem to plod on for a long time and then all at once become quite ill and overwhelmed.
I am sort of in that phase now.
I don’t look after myself how I used to and much as I try some days you just cannot be bothered, there are more important pressing issues to address.
(Like WHY have I had to phone gastro four times? And I still have no follow up appointment. Or WHY did our latest medicine trial not come up for review as agreed? WHEN will our first IEP be and our next TAC… I could continue this forever but to preserve my mental health and possibly yours I will leave this here.)
My daughter is my entire world, I don’t think a minute passes where she isn’t on my mind.
But wow, she is a demanding little madam!
The nature of her cerebral palsy is such that she is entirely dependent on others to get around or to play.
She has a short attention span and wants constant activities and is very quick to tell you when you aren’t doing the right thing!
I am very blessed that she can communicate in this way by laughing, babbling or shouting.
She does not speak with words, but her body language, expressions and tone of voice is incredible and she is good at getting what she wants.
I recently became quite run down to the point where I entirely lost my voice.
It has been hard to commit to about 10 hours of singing songs and being silly every day.
Thankfully our overnights at respite have started.
I hesitated for months after being awarded them because of the immense guilt I felt at the thought of her not being here at home with us.
But we took the plunge and have them twice a month now.
It is still hard to adjust to but even my body is showing signs it needs it with its eye bags, sore back, bad throat and general achiness.
For my birthday we went away for two nights and this was massive for us.
I missed her intensely and I think we probably spent a lot of that time talking about her and wondering what she was doing.
The funny thing is she was probably absolutely fine… she has the full attention of all of the amazing staff not to mention a great sensory room and endless amounts of electronic toys.
She has an overnight tonight and she is all I can think about right now.
So far we have taken the dog on a long rainy walk in the countryside and are planning to get a pizza delivery later on tonight.
These are two things we don’t really do when she is here… the wheelchair can be difficult to push up in the hills, not to mention that she doesn’t like wind, rain or quiet!
As for pizza, we do eat that when she is here but it is hard to relax sometimes as she takes a long time to get to bed even with meds.
Then there are the constant tube feed changes and so on.
I can’t wait to pick her up tomorrow and I bet after an hour I’ll want a nap or a break!
So I guess the point of this post is to say that we shouldn’t feel guilty for needing what we need.
I see this also as valuable time to recharge and try to be the ‘me’ that I was before appointments, admin, and therapies took over our lives!
It’s the summer holidays now so I think I will take advantage of the fact I can still lift her and have a lot of intense trips to the park lifting her onto slides and using our GoTo seat in the swings.