The delay in updating the blog over the summer is simple. There have barely been two days together when life has been consistent enough to allow me to compose any sentient thoughts.
It’s been a difficult year so far. It’s fair to say that since March Mojo has been ill on and off. General consensus is that she has simply picked up every available virus from upper respiratory to chest infections to gastroenteritis you name it she’s had it. When she is ill life is exhausting, it is completely impossible not to fear the worst every time you sit in A&E. The Ng tube has been in and out like a kind of depressing hokey cokey. The pattern has generally been 10 days ill 5 days well. Despite it’s repetition all year every time we get to day five you think, this is it, this is her coming out the other side of this hideous run of spring viral infections. Then when the next one arrives it is twice as depressing as the previous one.
Posts that have been started and never completed as my mood changed include, the dawning of visible disability with the arrival of our wheelchair and our increased use of the Ng out and about. The impact that has on people’s approach to Mojo and the realisation that accessibility, which I’ve always assumed in this day and age would be a given, really is not. An especially wallowing post about the number of A&E’s we have seen this year. A post about how Mojo’s achievements in signing and speech & language are so spectacular that it borders on embarrassing when we meet with the therapist and have to amend her targets monthly!So why therefore has the blog not been filled with epic whinging and self-pitying lamentations I hear you ask. Well because on those days when she is well and happy she is SO well and happy that it’s impossible to feel sorry for yourself. She has holidayed, played, developed, laughed and lifted our spirits immeasurably with each good day.
So aside from the vacillating stress levels relating to Mojo’s daily life has been the small matter of an ever advancing pregnancy. There has barely been time to think about baby other than at a strictly practical level. No, I can’t get the wheelchair in or out of the car. Yes, my breathing is very compromised thanks to baby being breech and wedging her head firmly into my ribcage. Yes, I am ready for bed at 5pm. No, Mojo is not. Even recently..no, I cannot stay on my feet when I stumble carrying both my babies and yes, 17 stiches in my knee hurt. Bit of a wake up call that one. Do not even get me started on the current heat wave, oh England with your quirky unpredictable weather, how I have raged at you.
I have adjusted to my default position of exhausted tightrope walking while balancing three thousand
things on my back. I can’t pretend it’s been much fun. My poor husband who struggles more than I do to stay positive on the dark days (he would be the first to admit he is easily tripped into his pit of despair) has been the one holding us all up on the tightrope. It makes for quite a surreal reality but one in which I am daily grateful that I married him as I firmly believe there are many who wouldn’t be able to cope with such unrelenting demands.
Then, as always, just at the point when I’m feeling the most badly done to, someone comes along and says something which pulls me swiftly from self-pity back to a crystal clear appreciation of what I have and how grateful I should be for it. On this occasion it was a conversation with my best friend who spent the afternoon with mojo and I this week and allowed me to talk her ear off about all my woes. We found ourselves talking about why pregnancy was so much more physically demanding this time around despite the emotional side being so completely different. She said, ‘I remember when you were this pregnant last time your only wish was that you would get to meet your baby even if it was only for a few minutes you wanted to know her in the world’ It was a simple shared memory intended to make me feel better about how crappy I was feeling. It almost took my breath away with the rawness of remembering how it felt to have that as my only wish. For that to be all I dared hope for. Looking at the smiling, babbling little girl sitting on the sofa laughing at the telly and remembering that I wasn’t supposed to get to keep her, while feeling her little sister kicking madly knowing that I was allowed to expect to keep this baby, took away any physical aches, stresses and exhaustion and replaced them with the overwhelming gratitude and joy that used to be how I greeted every day. What in the name of all that is holy do I have to complain about. Me, my girls and their amazing daddy are so very happy. Yes there are bad days, bad weeks and sometimes bad seasons but no amount of bad can take away the good that we have even on the days when you have to look really bloody hard for it.