Living with Cerebral Palsy 🍋🍋

Wednesday, 23 August 2017

It's ok not to be ready..

On this parenting journey through Quadriplegic Cerebral Palsy, there are  a lot of things we have to face that we're not ready to. This started of course at Elin's birth with accepting the diagnosis, which we didn't want to.  It continued through accepting tube feeding as a permanent,  a kitchen full of medication and a spare room full of equipment. Accepting a different community, a different set of priorities. Accepting a set of four wheels where her Clarks 'First Steps' should have been. More recently accepting a hoist just to get her into a bath. Accepting that dystonia will regularly render us housebound. We've had to accept a future we really weren't willing to approach and lets face it, a different life entirely. We had no control over any of these things- for a committed control freak that's pretty hard going!!
But, there are one or two things we have been able to delay facing. Leaving our beautiful little cottage for one (we successfully argued the case against the council to have adaptions done here, buying us a few crucial more years). Sending Elin to respite (respite facilities near here are AMAZING but thanks to help from family this is something we've not yet had to consider in terms of her care) and moving her into her own room. Yep, that's right, Elin hasn't really slept in her own room for the past nine years. I have no strange earth-Mum organic childhood development philosophy about this, I'm far from a co-sleeping parent advocate,  in general terms I'm far more practical than I am molly-coddler (when I was pregnant I had grand plans of the baby being in their own room by six months at the latest and Elin's Daddy agreed), I love my sleep and my privacy. Yet somehow, here we were. Nine long years and no movement.
Believe me I know how ridiculous this sounds and in truth I'm a bit (quite a lot actually) embarrassed about it. If you're a friend or a member of my family THANK YOU for biting your tongue on this as you undoubtedly have done. I wasn't ready to hear whatever you might have said before this year. If you're a professional involved in Elins life and you're reading this, Im sorry!! I lied because I couldn't bare to admit that we had a downstairs room kitted out for her with a hoist, moveable bed etc and we were still carrying her upstairs to sleep in our room every night. But I wasn't ready and I'm not sorry for that part. Everything else in Elin's life has had to happen whether I like it or not from day one. Decisions about her health, future and provision are rarely my own as her Mum. This was my decision and for a long time I was happy with it.
I am up often several times a night. Elin regularly chokes in her sleep. She often needs middle of the night nappy changes due to being pump fed overnight and the sheer amount of liquid she is taking in. She almost always needs medicating halfway throughout the night too, since her brain doesn't naturally produce the sleep-aid Melatonin. I just didn't see the point in racing up and down stairs all through the night to do all this. Especially when I was teaching as well as being Elin's Mummy. I was just too exhausted to want to think about it. Then my friends son who also had Quad C.P passed away in his sleep and through our heartbreak we became even more jittery. I think it would have been weird if we hadn't. So just like that, twelve months turned into two years, then four, then six and suddenly we had a nine year old sleeping in our bedroom and I was unable to carry her downstairs in the morning anymore, relying on Paul do do the lifting.
Around this time I stopped being unable to face the prospect of Elin sleeping downstairs and us sleeping upstairs. I started to wonder if it was time, the set up seemed vaguely ridiculous. She had done so much growing between he ages of 8-9. Not only that but her health has been so brilliant, no seizures or hospital admissions for almost two years. Her 9th birthday really helped me focus on all of this. She's just growing up.  I ordered a video monitor system (fantastic- 'Hello baby' from Amazon) and took a deep breath.
Last night was the first night we put 'operation big-girl sleeps' into motion. It went brilliantly. Elin only got me up once. I'm not naive enough to think that this will be the case every night and I'll probably curse my decision one night in the not too distant future on my sixth descent down the stairs, but the fact is I felt ready. We both finally felt ready as parents and I think Elin is too (it's only the past two or three moths that she's stopped choking in the night for example, something we couldn't have coped with if she was out of our sight I don't think).
I'm not writing this post to justify the past nine years, because I don't think I need to-at the end of the day that's just how it had to be for us and its surprising what you get used to. I'm writing this post because I want to share its ok not to be ready sometimes.
That goes for all aspects of Motherhood I think though, special needs or not. It comes back to trusting your gut, not pressurising yourself into things that aren't right for you and not caring what everyone else thinks (ahhhh! the true holy grail of parenthood right there!!)
Paul and I did feel a little weird this morning, this definitely marks a new era for us and we can't deny that Elin is growing up in her own special little Elin way. But mostly we felt pretty happy and totally confident that we couldn't put off this change any longer. It felt right, so it was.
And I think that's probably a pretty good rule of thumb for most of my parenting decisions, which I shall remind myself about next time I'm beating myself up over some small decision or other. Honestly I will, I promise :-)

P.s Thanks for the messages about the blog (or lack thereof). I've lost my blogging mojo a bit lately (and also my wifi connection which doesn't help but that's another story) I hope my 'Bitesize blogs' on Instagram have made up a little for this and enabled you to follow Elin's Summer adventures (link on right hand sidebar)

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