Inspiration

A few people have asked me when I am going to do my next blog recently. And I do admit the regularity of my blogging has dropped off slightly of late. And I guess there are two reasons for this.

Firstly, TIME. It is well documented that the working parent is time poor, splitting themselves between family and work and feeling that they are constantly compromising on one or the other. As the working parent of a child with additional needs, that ramps up a further notch or ten. Marigold now has sooooooo many therapies. What started off as “a bit of physio” has become: physio, occupational therapy, speech and language therapy, hydrotherapy, visits to a paediatric chiropractor, feeding assessments with another therapist to see whether we can get the the root cause of her ongoing chest infections (possible aspiration due to weak muscle tone). Every five or six weeks Marigold will go down with one of the said infections, which leads to more appointments; emergency doctors for medication, the salt caves to try to give her some respiratory relief. There is a constant merry-go-round of the other necessary appointments for her – just in for next month ophthalmology, ENT and a video fluoroscopy. Actually, writing it all down makes me feel slightly panicky. In addition to Marigold’s needs we of course have another little person, our four-year old son Harrison, who has just started school and needs love and attention, someone to play Power Ranger and Super Hero games with him, laugh about toilet humour and help him with his phonics homework. Also: our families (especially devoted grandparents without whom we would simply drown) and friends who are going through their own challenging life events, all people we want to give our time and attention to. Oh yes, and we work of course, 4 days a week for me and full-time for my husband.

So blogging has really slipped down the list. I think having read the above, you will let me off the hook for that.

But there is another reason as well. All of the above eventually just becomes…..the norm. I am now used to trying to squeeze one to two therapies in for Marigold in to an already hectic working week. We have accepted the fact that every six weeks or so, she will have an infection of some sort and we will have a week from hell of no sleep and horrendous anxiety whilst we try to help her get better (those are the hardest times.) This is just life with Marigold.

And it is hard, but rich and beautiful and so blessed. We would not have it any other way.

So I do I find myself wondering what to write about sometimes.

Anyway, you would think on top of all that, it would probably be best not to take anything else on. Yet my husband, he of “the glue that holds us together fame” has decided to run the London Marathon in 2016 for Unique, the Rare Chromosome Disorder Support Group, who have provided us with a huge amount of knowledge and support since Marigold’s diagnosis of  3q11 trisomy mosaicism, a unique genetic condition.

My husband has run many marathons before. Upon completing last one in 2013, his exact words were “I am never, ever doing that again.” He hated it. He was practically sick half way round. All his toenails fell off. Getting up in the freezing cold in the winter to go and do a 12 mile training run is definitely not fun. Even less fun when you have been up all night with small people. But this year he is inspired to run for a cause that means so very much for us, for our beautiful Marigold who tries so very hard to overcome her challenges. I know running it for her and other Unique children everywhere will give him the strength to get through his training and over the finish line on the day, where me, Harrison and Marigold will be cheering him on.

I am so proud that with everything going on in our lives, my husband is going to commit to such a huge task. I had a rare half an hour just now, and rather than sitting down and enjoying a cup of tea and some much-needed head space, I found the inspiration to write this blog. Because if he can do the London Marathon, I can find some time to write a little something, non?

@HBurness

@unique_charity

@LondonMarathon

 

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