About this time of year each year I put together a photo album. An old school one with proper printed out pictures and sticky film pages. I love photo albums. Since Mojo arrived I have been very diligent in documenting her life for obvious reasons. Most years it seems as though time has flown and little has changed. Creating the album for 2014 however has been quite a different experience. I am always telling people (anyone who will listen) how amazing Mojo is and how well she is developing and how much she is achieving but the enormity of what she has achieved in just one year has really astonished me this year.
We as a family have been quite busy achieving our own communal goals. Growing a human – from scratch! Building an extra room in our home and all the various moving out and packing up that involved. Working. Planning. Sweating the small stuff. All the while quietly in the background Mojo has been growing, learning, achieving, developing in her casual, extraordinary way. How is it only a year ago that she couldn’t use Makaton other than hand-over-hand when now she is teaching most of her therapists (and us) new words everyday. The fact that she can now communicate so effectively with us and with others is such a HUGE deal and it has crept up on me. Because Mojo’s development is so gradual and in small, determined, steps the magnitude of it is sometimes lost among the chaos of daily life. Until you sit down and absorb a years worth of photographic evidence.
This month Mojo is going to be starting Nursery.
NURSERY, on her own, three days a week. Every professional we meet describes her as bright. Clever. Sociable. My personal favourite came for our very beloved Portage worker who’s amazing tutorage Mojo graduated from in December. She said in her handover document to the nursery that it is very easy to underestimate Mojo but don’t be fooled as she is MUCH more capable than people expect. I can even include myself in that statement.
|Look mum two hands|
We had just two hospital admissions last year (and both back in March). Don’t get me wrong we had our fair share of close calls and periods of observation in A&E. All told however it demonstrates that we are getting better at managing the medical side of our journey. We spend so much timing beating ourselves up about how we cope with Mojo’s medical needs that it would never occur to me to pat ourselves on the back for just how amazing it is that despite the fact that she was ill from February to July almost consistently we only spent 10 days in hospital.
Mojos latest report from Small Steps (an amazing charitable organisation which runs conductive education sessions for Children with physical needs) told us in no uncertain terms how proud we should be of how much she had achieved in the space of a term. Weight bearing through both her arms and legs. Tolerating rolling, standing, kneeling with less resistance every week. I’m painfully aware, particularly given the experience of watching a conventional child develop with graceful ease that we currently have the pleasure of with baby Ce, that it’s hard to imagine quite how much effort goes into achieving such apparently straightforward things but trust me it’s monumental. The tenacity, patience and bloody hard graft that Mojo displays in the course of one year is more than I will need in a lifetime.
|At a tea party just like the other kids!|
Right now I could explode with pride and happiness. I won’t though, I’ll just get back to my photo album construction and praying quietly for 2015 to live up to the joys, laughs and awesome achievements of 2014.
|Multi purpose wash baskets!|
An Afterthought on Portage Graduation:
Just before Christmas I saw a look on a strangers face that was so familiar it gave me goosebumps. We were at one of the three thousand Christmas parties Mojo was invited to. The look I saw at the party was on the face of a new parent. His son was at a Portage social for, what I presume was, the first time as he looked to be only a few months old. The look was one of awe. I could see so clearly on his face that he was getting that wave of *oh my God we’re not alone! There is a community here and it is amazing and loving and fun and safe* The father had such a huge dewey eyed smile. I remember the first time I felt it. It’s always the group singing that does it and add Christmas songs into the mix and you’re looking a very potent emotive experience. I wanted to give him a hug and say ‘I know isn’t it AMAZING, You’re going to be looked after’ (I didn’t). It seemed such an appropriate end to our Portage experience, especially given that we have come so vary far from those early experiences ourselves. As with so many of the people who have worked closely with Mojo it is impossible to find the right words to thank them enough for what they have done and continue to do. So you just say thank you give them a hug and know very well that you will always be grateful for the things they have done for your family.
|OH MY GOD!!!! Holding herself up on a MOVING ride. I’m holding my heart to stop it exploding!|