When Did I Become that Person?

Twelve months ago, things were pretty bad. We were still months away from a cerebral palsy diagnosis (although we knew deep down that that was coming) but we were six weeks post-diagnosis for the infantile spasms Boo had developed. Our already fragile world was cracking before our eyes. The aggressive steroid course had worked, thank God, but Boo got horrific insomnia and so neither of us had slept for months. He had also become unrecognisable as the medication turned him into a bloated, moon-faced, cartoon-like version of himself. And my happy, beautiful determined boy had turned into a little monster, fighting the physical and emotional irritability the tablets induced.

As I’ve documented on the blog many times, I nearly lost my mind. I was severely depressed and had terrible panic attacks. Boo couldn’t flinch without my breathing stopping or my heart racing. Was this another seizure? Were they coming back? Would he regress further?

I remember taking Boo to a physio appointment in early February 2013 (the first we’d had since being released from hospital after the seizure treatment) where I broke down in front of our lovely physio. I hadn’t remembered driving to the hospital that morning. I was so tired that I could barely string a sentence together.

The physio stopped the appointment before it had started. Instead of asking me and Boo to show what he was up to as usual, she sat me down and spent the best part of an hour talking through what help I might need to access and who we might turn to for support. She emphasised how much I needed to look after myself, how I wasn’t going to be able to help Boo or his big sister if I allowed myself to collapse. I had to find solutions to make life more bearable. I left the appointment with a different kind of to-do list than I normally have. Instead of exercises, I had people to phone or email. Appointments to make for me. I felt horribly guilty that I had selfishly squandered Boo’s precious appointment. But I knew she was right. I had to find a way through this.

Twelve months on and things are very different. We had a physio appointment this Monday (we see the physio every two weeks). It was a good one. OK, Boo still isn’t doing things that a year ago I nightly pleaded to any god who would listen that he might, like sitting independently or rolling and crawling. But you know, that’s OK. He has made huge progress. And it’s all about the inchstones, not milestones, around here now. We spent a lot of time in the appointment on Monday laughing and joking and focusing on the good. On how far Boo has come.

Just before we left the appointment, the physio asked me a question: ‘I’ve got another Mum whose recently started seeing me with her little one. They don’t have a diagnosis yet, but cerebral palsy has been mentioned and it seems very likely the diagnosis will come with time. She really needs someone to talk to, someone who’s more used to all this and can give practical and emotional support. She’s not in a good place. Can I give her your mobile number?’ Without hesitating I said ‘Yes, of course’.

As I left the hospital, I started to wonder about this person, like I wonder about people who read this blog sometimes and the comments they leave or search term traces that appear on my stats page. I wished I had her number so I could call her now. And then I started to wonder how I had become the person the physio evidently thought I was. After all, only twelve months ago I was the one desperately needing help and struggling to come to terms with things. I was the one the professionals were worried about. Not Boo. And now, they think I’m someone who might be able to help others because I’ve overcome those hurdles. Because I’m in a much better place.

Really? The possibility stopped me in my tracks.

Of course, I’m not a different person. I am still the same thirty-something woman who sobbed her heart out to her son’s physio and pleaded for help. I still worry furiously about Boo. My horizon of expectation has shifted massively, yes, but I still hope deep down that all major cognitive and physical milestones are his for the taking, in his own way. I still think a crystal ball would be handy, so we can plan for whatever is ahead. And I still get afraid about the economic, emotional and physical challenges Boo will face as he grows up and how all of this affects his lovely big sister.

But I rarely feel the soul-rending desperation any more that nearly caused me to have a breakdown a year ago. In fact, I feel a great deal of hope now. I laugh a lot.

I don’t have all the answers, though. I have so much to learn and do learn so much from all the lovely folks I’ve met on Facebook and Twitter and through this blog. And yet I still mess up. I still get floored by things, often without any warning. I’m still me, it seems.

But the more I think about it, I suppose there is one big difference between the me of twelve months ago and the me now. I have to fight a lot for Boo: fight for support and services he is entitled to, fight prejudice and ignorance, policy, procedure and bureaucracy. It is exhausting and a more-than part-time job. But I rarely fight this life any more.

Acceptance is an easy word to trot out and a very hard thing to achieve, in my experience. I’m also not sure it’s the right word for me. I’m just not sure I accept our life, frankly. For one thing, ‘accept’ is a bit too passive a word for my liking. But I have accommodated myself to this life, for sure. It’s mine, for better or worse, and although it’s hard, the rewards are enormous.

So, maybe I have moved on, after all. I hope she phones. I hope I can help.

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8 thoughts on “When Did I Become that Person?

  1. Michelle Davis

    It is so lovely to read this post. I have no doubt that you will be a voice of sanity for the person who has your number, a voice of someone who has been there and done that and proof to her and her family that it is possible to be in that awful place, but come out the other end.
    I particularly like your comment about accommodating yourself to the life you have, rather than the ‘accepting’ as such. I think it gives a much more accurate description of your approach, and probably much more useful to you all than simply accepting!

    Reply
  2. Izzie Anderton

    You have come so far in 12 months and iI can’t begin to imagine how hard it’s been, but you’re obviously a heck of a lot tougher than you ever thought possible. Your son is lucky to have you as a mum, keep fighting for him and good luck to both of you x

    Reply
  3. lookingforbluesky

    I nearly cried into my coffee reading this post, I get so much of it. It’s great that you got support at the time of diagnosis, I had none with either child. I’m well down the road of acceptance with Smiley, but my son? I still shake my fist and the sky and pray that things will improve xx

    Reply
  4. Tarana Khan

    You’ve written so beautifully about the transformation that happened in a year, but I’m sure it wasn’t easy. You’re right, ‘acceptance’ doesn’t fully describe the challenges that we often face as parents. #PoCoLo

    Reply
  5. Kerith Stull

    What an authentic post. And LOVE that phrase “accommodated myself to this life.” I’m the mom of an almost 18yo daughter with moderate cerebral palsy. I empathize with your journey (I could never understand someone else’s, but I do get it.). I had panic attacks and depression in those early years as well. Sending hugs….

    Reply
  6. Tammy cole

    My daughter was diganosed with ceribal palsy at 12 months corrected she also has infitile spasams that have completly stoped since shes been on meds i just recently found out she will need a wheel chair and i always have to fight transit because i still use a stroller at least till she gets her wheel chair they always try to kick me out of priority seating and i fight with them i tell them she has ceribal palsy and cant sit up on her own or walk they say babies in strollers dont count i was mad so her peadiatrician wrote a letter stating she has to be in her stroller because of her disability

    Reply
  7. Jane

    I loved this post and I can really relate to it. It’s funny how in the world of special needs you lose all track of time. I think it’s because of all the emotions you go through so quickly. A year ago isn’t really that long but I bet it feels like a lifetime away. Acceptance is the key but I totally agree that I don’t think acceptance is the correct word as it is a bit of a bitter pill to swallow. It is all about learning to live in the situation we have been placed in, the life journey that someone decided would be our path. I’m so glad you are now able to help others, I really wish I had someone to talk to in those early months.

    Thanks for linking up with Small Steps Amazing Achievements :0)
    x

    Reply
  8. Pingback: On defining moments… and everything after… | As Alex Grows Up

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