Accepting that Others Don’t

The A-word is a big one in the premmie and special needs worlds. Almost the minute after your baby is born early or when health or developmental difficulties first become apparent in your child, healthcare professionals and a host of well-meaning folks start telling you that you are on the road to acceptance and that it will take you a while to get to your destination. But you will get there, they tell you. You may find yourself in Holland at the end of the journey, but who wants to go to Italy anyway. (I, for one, am quite fond of sun and pasta, for the record.)

When I think back over the past year and a bit of blogging, I realise that I have blogged much less about acceptance than I might have imagined I would. It’s true that one of my favourite posts on the blog (because it’s about one of my favourite people) is about Sissyboo’s instinctive acceptance of her little brother. But I have written about acceptance much less in relation to me.

There are two reasons for this. It’s partly that, quite frankly, I don’t like the word all that much. As I’ve said before, accommodation seems a much more accurate way of describing my response to Boo’s challenges. But it’s also simply the fact that since he was three days old, I just knew life would never be straightforward for Boo. Once he had contracted that bloody infection in his incubator, and once we heard that he had sustained a massive brain bleed, I knew what that likely meant. I wanted things to be different, of course. I wished, begged and prayed that I was wrong. But I knew. I’d accepted the difficulties that lay ahead long before we got a diagnosis of cerebral palsy or before I even knew precisely what those difficulties  would look or feel like.

I haven’t written much about acceptance on the blog,I now realise, because I have pretty much always accepted things. Or at least, I accommodated myself to them a long, long time ago.

I feel lucky that acceptance has been relatively easy for me. That’s not to say that I’m not regularly twisted into knots or prone to depression, anxiety or the odd waterfall of tears with worry about Boo. But I have seen the pain and anger that others have felt trying to take on board how things are and are likely to be for him. And I am glad that I have never had to feel that and that such emotions have never got in the way of my unbounded love for him.

But lately I have come to realise that I do feel pain and anger (irrational and unkind pain and anger, I think) when confronted with others’ lack of acceptance of my son. I’m not proud of it, but it’s true.

This is the sort of thing I mean.

Scene 1

Me [talking to parent in the school playground]: Yes, Boo’s doing well. Thanks for asking. [An awkward pause while I try to think of something to say that is a positive in our lives and that they won’t greet with that look of pity I find so hard to takeBingo!] He was given a walker to try out by his physio last week.

Parent: [with palpable relief that I am not going to talk about things that make them uncomfortable like the fact he still can’s sit independently]: Oh that’s wonderful. He’ll be running before you know it. You will be sending him here to school won’t you? He’ll be captain of the sports team one day, I’m sure.

Scene 2

Me [making idle chit-chat while waiting for our mainstream swim class to start while Boo is eating my hair and trying to break my back by going into full extension in excitement]: Boo’s moving up to the nursery room next week so he’ll be with J. We’re really pleased he’ll have a friend there.

J’s Dad: Great. It’s good they’re finally moving him up to be with his peers. He’ll catch up with the rest of them in no time, I’m sure.

These are both real-life conversations I have had in the past two weeks. I could have picked around a dozen more in the same period. All were had with well-meaning and thoroughly nice people. But they left me sad. More than sad. Angry. Not with these people, you understand. That would be wrong. But just with the situation. With the failure of others to come to terms with things as they are.

I don’t know if Boo will go to mainstream school. It’s possible. But his physical needs are severe and he would need considerable 1:1 input. It is unlikely he will go to his sister’s school. Even if he did, he will never be the captain of the sports team. I don’t know if he will ever walk unaided, but the best guess of everyone involved, is that even if he can walk short distances with a frame, he will use a wheelchair much of the time. He will likely never run.

And he will never just catch up because he’s not behind. He is exactly where he should be – no: he’s miles ahead of where the MRI scans suggest he should be – given the extent of his brain damage. Of course, being with his peers in nursery is a great thing. I couldn’t be happier that this has happened and that the transition has gone well. But Boo will never be exactly like his peers. And why the heck should he be? He’s just perfect the way he is.

Oddly, I find the eternal optimism of people we don’t know very well to be much more difficult than some of the doom and gloom predictions of medical folks we see regularly. It’s much easier to prove people wrong (and Boo and I take great pleasure in doing this on a regular basis) than to disprove that others could ever be right. And on the odd occasion where I have corrected people and pointed out that it’s unlikely Boo will outrun Mo Farah one day, but that that’s fine and we don’t care, I have been made to feel like I am a pessimist, have an unhelpful attitude or that I have done something wrong in not doing my best to make other people feel better by painting a false picture of my son’s life and future.

I am aware in writing this that you might think me mean spirited. I hope you see that I don’t blame people for saying these things, but I do find them difficult to take. You see, they are a constant reminder to me that we can accept Boo completely, but they – society at large – will always be judging him according to a yardstick he can never live up to.

So I guess I do still have quite a bit of emotional work to do. Accepting that other people find it hard to accept Boo is going to be one of my trickiest challenges. But I have to work on it. Because my little boy is going to have to do this later in life, and his sister is already having to do it now. And I want to be ready to help them. Because we are in this together.

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18 thoughts on “Accepting that Others Don’t

  1. Complicated Gorgeousness

    Lovely post. I felt an odd sense of relief once Gabe started special school. There was no more talk from people about “catching up”. I now gently say to people that for him to catch up he’ll now have to develop faster than his peers and that’s not going to happen. He now has new peers that are on his development tract and while not great – it is for us for now good enough. He is “exactly where he should be” – love that. xx

    Reply
    1. mrboosmum Post author

      That’s so true what you say about having to develop faster to catch up! I must remember that one. I know what you mean about the relief of the SEN school environment. I get that same feeling from Boo’s conductive ed class. All the kids have strengths and weaknesses and all in different areas. No one judges except to be continually impressed by them.

      Reply
  2. P

    You do not seem mean spirited at all. You seem honest and like an incredible mother to Boo. There is absolutely nothing wrong – and in fact there is everything right – in you wanting people to see Boo for who he is. A strong, amazing medical miracle who is doing things he shouldn’t be doing and isn’t doing things everyone wishes he could. It isn’t good or bad. It is. That’s who he is. Comments like those are starting to bother me more these days too because I don’t want V growing up thinking he’s “less than” or not “good enough”. I wish people would realize that addressing him for who he is and whatever limitations he has is exactly what we should be celebrating. Thank you, again, for bringing to light so eloquently such an important topic that many of us think about and go through!

    Reply
  3. Laura

    Thank you so much for this. My son is approaching 9 months old, diagnosed with CP about 2 months ago, and honestly I’m just coming to accept what it will really mean. You put the anger I feel about the “oh don’t worry, you’ll see, he’s a fighter” comments from everyone so perfectly. so glad I found this blog.

    Reply
    1. mrboosmum Post author

      Hi Laura. It’s taken me a while to reply but I’ve been meaning to ask how you are and how your little boy is. If you ever feel like a chat on email or the phone I’d be happy to talk. I remember those early days well. We are only a bit further down the line (Boo is 2) but if there is any info you need or if you just need someone to listen, do get in touch.

      Reply
  4. Mummy Tries

    You have every right to feel like this hon! I could never imagine what it’s like for you, and please don’t think I’m comparing our lives for a second by commenting.

    I do have my own set of challenges though, and can relate to what you’ve said. On the whole I think people mean well by asking these sorts of questions. I just don’t think they actually want to enter into an uncomfortable conversation when you give them the answers. Perhaps it’s a curse of being British, or just a sign of shallow modern times? Either way it can sting 😦 #PoCoLo

    Reply
    1. mrboosmum Post author

      Yes, I think we all worry about uncomfortable conversations. I suppose I have got over the awkwardness (it’s just the way our lives are) but from the outside I can see it looks different. I’m sure you’re right about it being a British thing, in part.

      Reply
  5. Pinkoddy

    What an honest post. I am sure it is difficult on both sides, and with more people being honest about how they feel (such as here) then more people will be able to understand each other. I can tell you’ve had enough of people’s opinions and if you think about it you probably don’t even need acceptance – just to be left to get on with life and enjoy it. (And now I hope I haven’t said something to annoy you, because that is how I feel when I try and express myself x).

    Reply
    1. mrboosmum Post author

      You could never annoy me! I think you’ve hit the nail on the head. I think that’s exactly what we want: to get on with things. I know our life looks odd from the outside and I know some people pity us. Life is hard, but life is good and its ours for the taking.

      Reply
  6. Carrie TimeToBeAnAdult

    I think often people follow that “you’ve got to be positive” attitude and it turns into an unrealistic expectation. Thank you for sharing such personal thoughts, It’s certainly made me think about what I say to people when I’m comforting them or trying to buoy them up…you can be supportive, while still being realistic I guess? #PoCoLo

    Reply
    1. mrboosmum Post author

      I think that’s right. Being positive is a great thing, but if it’s an unrealistic goal it just gets you down. I know I have found it difficult when friends have been confronted with difficulties in their lives. It is hard to know what to say. I think supportive but realistic is absolutely the way forward. Thanks for reading and commenting.

      Reply
  7. pantomum

    What a wonderfully refreshingly honest post! Of course you and the family accept Boo for who he is, a unique and special person, but it is also good that you understand that others don’t necessarily know how to react. And it must be difficult for you. But keep smiling and know that others are only trying to be kind. And try to accept that.

    Reply
    1. mrboosmum Post author

      Oh I know people mean to be kind. I don’t blame them for saying those things, but I wanted to put the other side of the story across. Thanks so much for reading and commenting.

      Reply
  8. wrymummy

    This is such an honest post. I can see how other people’s unrealistic expectations can be really upsetting for you. I love how you say you constantly surprise the medics with your and Boo’s progress – you are such a lovely devoted mummy to him and Sissyboo. x #PoCoLo

    Reply
  9. @katgrant30 (Bumps & Grind)

    Great to read such an honest post! I could so easily have been one of those slightly misguided people in the playground… Hopefully now I will think twice about making such glib remarks! 🙂 My cousin-in-law has CP and does walk unaided (over quite long distances!) and I am always in awe of how much effort he makes every day to do something most of us take for granted.
    #PoCoLo

    Reply
    1. mrboosmum Post author

      Thanks so much for your lovely comment. I know people mean well, I really do. But it still hurts a weeny bit, even if that isn’t an entirely rational reaction, and I wanted to explain that.

      Reply
  10. Astrid

    I’m so glad you were able to accept your son early on. I know these inconsiderate comments really well. Even now that I’m an adult, people still assume I will “catch up” re my autism. No, I won’t. Also, when I tell them about my blindness in any sort of detail, inevitably the question comes up (even from nurses, who should know better): “But can’t they transplant retinas nowadays?” I have not accepted my blindness really, but wouldn’t I be the first to find out if there were any cure for my type of blindness, so that I could make a reasoned choice whether I’d want it? And as for my autism, they are nurses too who keep telling me I can “catch up”, but I want to be accommodated, not pushed towards normalcy.

    Reply

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