Thursday, 7 January 2010

Back to that subject of Gratitude

Before I became known as Steve, the guy with MND I was known as Steve, the guy with triplets which was infinitely preferable.

The only times the "triplet" reference irritated me was when I was introduced to someone in this way and the response was "that must be hard work for your wife " inferring that I, maybe as they had done, had taken the option of leaving early for work and conveniently getting home just as they were in bed. I'm not saying the temptation wasn't there occasionally but it simply wasn't an option. So breakfast and bathtime was usually my time with the boys giving me time to get to know them and giving tracy regular,  albeit brief breaks from the relentless and in the beginning quiet tedious business of looking after 3 babies.

Everyone tells you that you shouldn't wish these early years away as they'll grow so quickly. But having changed over 3000 nappies (the washable variety ) in the first year and made up nearly 3500 bottles of formula in 6 six months, you can't help looking forward to the days when you'll be playing football in the park, going for bike rides in the country and having snowball fights on days like today. So I feel angry and cheated that I was given so little time to enjoy any of this.  OK, so I can watch them from indoors in my wheelchair playing in the snow with Tracy, but it is hardly the same.

Helping out during the early years may well be commendable, but I don't expect Jake, Luke or Daniel to appreciate or be grateful for that. When we first had the boys we went to see Stephen Biddulph, author of " Raising Boys " giving a talk about that very subject. I always remember him saying  how a dad's role really comes into play when boys reach the age of seven. Little did I know then about the difficulties I would face attempting to fulfil this role.

There is no escaping the fact that since the earlier part of 2009, my role as a dad has been diminished to the point of almost non-existance. Particularly with my speech now pretty much unintelligable, my ability to interact with them is all but gone. A 9 year old is not interested in waiting while I slowly spell out a sentence on this machine, particularly if they suspect the finished sentence will read "Time for bed "!

On the subject of discipline,  I know most parents will say jokingly how little control they have over their children but when you really don't have any, frustration levels go through the roof. In fairness the boys don't take advantage to the extent that they could, but the inability to intervene physically or verbally with any effect leads to me ranting unintelligably and getting unreasonably angry. I then get angrier still with myself for having so little tollerance; a quality I used to have in abundance pre MND and one which I hoped the boys would inherit.
The one thing that I hope I can give them now and in the future is a level of financial security. At the moment it is enabling us to give them memorable holidays and activities like horse riding. So maybe there is one lesson in life I have taught them...... get decent health and life insurance!

I know I should look at the positive aspect of all this which is that my gradual withdrawal from their lives will make our ultimate parting that much easier for them to deal with.  But the selfish part of me wants them to miss me but I fear they won't. And maybe its that possibility which  I resent the most.


Anonymous said...

What can I say to this one....

Just please let people know that my fundraising web sites are still open.

To support Motor Neurone Disease go to: To support Princess Alice Hospice please go to:

Thank you.

Anna P

Anonymous said...

Hey Steve,

Good to see your blog, both with regard to the fun times and the angst you are obviously going through.

Don't underestimate just how much you are giving your boys by them seeing your determination to get as much out of life as you can, despite the limitations this awful condition puts on you.

They will be proud of you and always remember the great experiences you are sharing at these significant times.

This blog is also a strong record of life with MND and will be really insightful and a huge inspiration for them.

lots of love,
Rachel (B)

graham said...

You are a great Dad, you always have been!!
take care

Anonymous said...

Oh Steve

Your boys WILL miss you!