As if May’s brain injury isn’t enough…

Posted on Dec 15, 2012 | 13 comments

…now she will need major hip surgery.

It’s better if I just say it, like that, than draw it out because I can not bear it.

I can’t bear the injustice of it all. That May would already be born so severely disabled, and now she must be subjected to major surgery before she is even four years old. She will spend five days in the hospital. Three months without bouncing.

I can’t help but return to this idea that I could have done something to prevent it. My husband tells me this is not true – that once she was born, and born as she was, this problem was as inevitable as any other issue she has.

I can give May every ounce of love within me. But, it isn’t enough and that is a terrible.

And, I fear now for my faith in anything to work. Because when you set your sights on May not needing surgery as a goal – as opposed to something grand and simple like sitting unaided – the goal already seems rather low. Now, it is insurmountable.

So, what of the other things, the bigger things, like sitting?

It is weeks now since her hospital appointment. Weeks until I could write this. Instead, I have kept as busy as possible. There are moments though, where I find myself alone and unguarded – small moments waiting for the kettle to boil, or the light to change at the crossing – when I am not talking or writing, or teaching or caring for the kids; I find my mind whirls to all those hours that I did nothing. That I sat and watched television. Or, I ate a snack. Or, I slept in.

I wish I could gather them up, like time banked in a savings account, and use them to set May’s hips right.

13 Comments

  1. what can I say, except that your husband is surely right. And those brief moments when you slept in, ate a snack or watched TV for a bit – those are the moments that probably kept you sane enough to do the hours of therapy, the phone bashing to the hospital, the bouncing and the smiles that gave May a love for life and a huge amount of fun. Stay with us Mama Lewis – as a wise Mama once told me, there will be better days ahead.

  2. Stacey, You are not God. How could you save her from needing hip surgery? You are a phenomenal mother. Don’t EVER question yourself. EVER. Let it go.

    Love to you and your family,
    Amy

  3. Dear Stacey,
    I’m very sorry that you, Griff and May need to deal with surgery . . . after everything you’re already dealing with. True, it’s not fair; however,fair has little to do with the reality of life. We must do what we must do, and you will continue to be strong, as you always have. You will draw on your amazing fortitude, and you will get through this with all of your resources and the love and best wishes of all your family and friends. I will keep you all in my thoughts and prayers. Much love, Aunt Arlene

  4. So sorry to hear this about May. You can’t blame yourself. Bouncing gave her such pleasure and I agree with your husband, this is not something you could have prevented, clearly, because if it was possible you would have done it. May will recover and hopefully, she will be stronger in her core so she can become all that she can be.

  5. *hugs*

    You know intellectually that there’s no possible way this could be your fault, but it’s harder to know it emotionally. I hope that your emotions will accept, eventually, that there’s nothing you guys could have done to prevent it.

    I also hope that the surgery will go well, that May will find other fun activities to make her happy while her bouncing time is restricted, and that when all is said an done it will lead to an improvement in her ability to move.

    • Thanks for focusing me on what I can do for May. What other fun activities can I find for her so that she (and I) don’t miss bouncing? It’s bound to include music.

  6. Life is a ….Let’s hope that it is short term pain for long term gain.I think you are one amazing person, coping with what you cope with.I think you are a wonderful Mum and have so much love for your children.Never doubt yourself and keep us posted when May has her surgery(you probably won’t have time)

  7. I’m so sorry Stacie, I wish I could make it better, I can well imagine what a difficult time lies ahead. We have the threat of hip surgery for Dylan hanging over us, most recent hip scan wasn’t good but not yet bad enough to take action, so we are in ‘prevention’ mode – but what does that really mean? Our children’s hips aren’t developing properly because they are not mobile and weight bearing, and static standers don’t really help, only active/dynamic weight bearing will really do it. D spends as much time as is feasible in his walker but it isn’t really much, and he tends to sit & scoot anyway. So that leaves us holding him in standing and walking as much as we can, but that isn’t really practical for most of the time. You do what you can but ultimately this is a symptom of the CP and it sucks. Don’t blame yourself. Big hugs x

    • Well said and explained Susan. There is a major issue here and that is that May can’t walk. I struggle with how I can – or how it is even possible – to fight against that current.

  8. damn you small moments – I actually stopped washing up and making tea for a while there because I couldn’t stand the thinking time! I also hate washing up so it did serve a duel purpose…Who would have thought that our kids not walking would lead to something so awful, not just the major operation but the hospital time which is soul sucking and then no bouncing!

    I was chatting to a dad the other day and his little 5 year old was just recovering from surgery and he had also worried about the lack of rough and tumble play and bouncing at the other end. He had made videos on his phone for his little boy to watch of him bouncing with various family members and it did seem like he was virtually bouncing with a big grin on his face, no where near as fun obviously but I thought it was a good idea.

  9. I am so sorry that May, you and your family are going through this. No child should have to go through surgery at such a young age. What do the doctors and physical therapists say about what the surgery will do for her, and how she can get in activity to help her heal?

  10. I’m so sorry to hear she needs the hip surgery. It’s terribly hard to not blame yourself. I hope that it goes super smoothly and she’s back up and around in no time.

    Having your child have surgery is one of the scariest things out there. I’ve experienced it twice and never want to do it again. What we did was look at the positives…..our little guy would be better and have a better quality of life because of it. And I’m sure May will as well.

    Also, thanks for writing this blog, I find it quite inspirational.

    • Thank you, Jeanette. It is good for me to hear from people who have completed surgery with their children successfully.

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