Spoonie Parenting: End of an Era

It seems like yesterday that I dropped my little boy off for his first day of primary school but, in reality, it was in September 2012.  He is just about to start his last week of year 6 before he moves up to, gulp, big school.

As a spoonie parent with Multiple Sclerosis, I have been through my own fair share of new experiences since he first set foot in his classroom as a Ninja Turtle-obsessed four-year-old; declining mobility, changing work practices and serious medical treatment.  If you had told me, all those years ago when I was walking him to school that I would be crutch-dependent, no longer working for the NHS and have short hair due to HSCT treatment, when he was leaving year 6, I wouldn’t have believed you! But, that is how it has turned out.

Changes

It is easy as a parent to feel that your children always need your help to guide them on how to do things and to learn new tasks.  That is still certainly true for me in some respects, but I have to admit that my kids frequently call me out for repeating myself over and over and for telling them how to carry out the simplest of tasks.   It’s almost as if I still think of them as the little preschoolers that they once were. In my defence, I often do need to remind them to take their sports kits to school (and then they maybe will still forget!), but quite often if I stop and listen to myself, I am doing the equivalent of ‘teaching my Granny to suck eggs’.  At what point did my kids become so knowledgeable about the way that the world works? And how come my 11-year-old is better at maths than me?!

One way that I can certainly say that my son has developed over the past few years is in his acceptance; most noticeably, his acceptance of me, as a spoonie parent with often limited ability:

• He’s come to terms now with my mobility scooter and how much it helps me to remain independent (compared to 3 years ago, when my scooter was kinda a big deal to him).
• He accepts the fact that I need to sit down a lot and will get me a chair so I can still watch him whilst he’s playing outside
• He shows awareness that there was a ‘Jen before MS’, often asking me what exercise I liked and did (fitness is a big thing to him at the moment!)
• He accepts the fact that, although plant-based food and oily fish are not his favourites, we eat a lot of them at home because it is good for us, and me in particular, because of my MS
• He demonstrates understanding, compassion and acceptance of those people who may be different from him

I wish that my son could have known me before my MS affected me; I wish that I could run around with him and have a football match with him.  I know that, deep down, he must still feel ‘different’ for having the only Mum who turned up for the secondary school open day in a mobility scooter and having the only parent who needed to use the lift.  For every argument that we may have about how much time he is spending on his Xbox or the fact that he didn’t put his breakfast dishes away again, he shows me so much kindness and support around my MS that, really, I couldn’t ask for more.

New Pastures

With attendance at secondary school comes new independence; suddenly, it is the norm that secondary school kids have their own mobile phones and he may decide to hang out with his friends for a while after school rather than coming straight home. I’m guessing that this is the experience that all parents have, not just spoonie parents. But perhaps because I am not working at the moment, I have had more time to ruminate on the changes that are happening with my not-so-little boy? I’m excited for him and know that this is the start of something great for him; he seems to have ‘outgrown’ his primary school in a way. What kind of young man will he be? Will he continue his guitar lessons and be in a band like his Dad was at school? Will his love of all things scientific continue?

Avoiding the MS Shadow

Ultimately, I hope that he will continue to grow and thrive and have all the experiences tweens and teenagers should have.  I have to admit that I sometimes wonder “what will I be like in terms of my health?’.  If I have moved from ambulatory and working to disabled and skint in the seven years that he has been in primary, what will the next seven years have in store? But, I’m a big believer in living for the now and am sure that whatever my health has in store won’t affect him too much, I will try and shield him as much as possible.

As part of my son leaving school, the year 6s are performing a play for which I had to provide a few pictures of him growing up; I’m going to see it tonight and my guess is that the play will tug on parents’ heartstrings!

So, for now, I’ll say “good luck, Alex!” and hope that he enjoys every minute of secondary school – and I’ll get the tissues ready for tonight’s performance!

Till next time