Coming together

Blogging is my sanity saver. I blog to connect with others and as therapy. I blog to work through my irrational guilt over Boo’s premature birth and disabilities.

But sometimes blogging compounds the sense of guilt I can never give up on. Partly it’s because I feel guilty stealing moments of the day to do this when I could be doing more work, making flashcards, sourcing equipment, or reading about surgeries and therapies. Partly it’s because I feel I dump too much here. This is, frankly, the only place you get the real me. The warts and all how-I-feel-about-life me. It’s a place where I can say the things I can’t, won’t or don’t say elsewhere and, inevitably, that means it can be balanced more in favour of the stresses, the battles, the stuff that stops me sleeping at night. The me who has to fend off depression and anxiety.

And that me, I worry, from this blog’s readers point of view, must seem terribly embattled. That me, I worry, might seem like someone who whines and complains a lot. Well, I guess I do and am these things. But outside the blog that me is tempered by my sense of pride in Boo and his amazing big sister, by my incredible capacity for self-censorship, by the fact that I want and often am an extremely happy person.

And that me is not separate from special needs parents me. Special needs parent me finds joys in life that I couldn’t have dreamed of before having Boo. I know this will sound horribly trite, but it’s true: I have an appreciation for life, for the amazing capacity of human beings and their bodies and minds that I just didn’t have pre-Boo. I have also met the most wonderful children and parents in the past 2 years, people who should really write in to the OED and tell them what hope, tenacity and determination really mean.

One thing I particularly worry about is that people who read this blog might think reading all my posts about battles for equipment and services and therapies is that I am not grateful for all we have: the stuff without which our difficult lives would be impossible and the interventions that have already made such a difference to what Boo’s life and what it will be like in the future.

And today I was reminded about how incredibly grateful I am for many of the professionals involved in Boo’s life. The people who care, love and hope for him alongside us. Because these people do exist.

A few moments ago, I was surrounded by three of them. I went into Boo’s nursery for a joint OT-physio-moving and handling appointment. Joint appointments are the holy grail of special needs life. They are like gold dust. Boy, do they make a difference. Joined up thinking. Linked services. If only they could happen more often.

Of course, I was really worried about the appointment beforehand. Nursery are clearly and understandably worried about managing their own health while looking after a largely non-independently mobile Boo. I knew pre-meeting conversations had included the words ‘hoist’ (not a bad thing, but Boo can do seated transfers so I wasn’t sure we need them… yet). I was worried it was going to be another ‘we love Boo, but it is a pain having him here’ conversation.

And I knew Boo would be far from his best in the appointment. We are now more than 2 weeks into Boo’s non-lycra suit period while they adjust it for growth. The difference between him in it and out of it is totally staggering. He is a different child. No aspect of his life (except his smile and even that is waning) is the same without it. He dribbles constantly and has a terrible rash. He can’t speak as well. His head control is compromised. He can no longer sit even for the few minutes he could manage before. He cannot use his walker or Whizzybug. This appointment was going to be tough.

I gave myself a good talking to before I went. His lovely physio said it was a good thing that moving and handling were seeing Boo at his worst as it would ensure maximum support. I smiled as my heart sank.

But the moving and handling advisor was a breath of fresh air. She looked at Boo. She watched him closely. She saw how he reacted to conversations around him. She could see he has great understanding. She listened to what we said he could do, even if he couldn’t achieve this easily without the lycra suit. I didn’t feel, as I often do, that I had to persuade her to see Boo as I do. She got him pegged in about 10 minutes.

No problem or issue that was discussed fazed her. She had solutions (practical and easy) to address each one. And she kept repeating the same sentiment. Boo is a bright child. He is motivated and wants to be as independent as possible. We need to use every opportunity to help him achieve that. There is no need for a hoist yet. He needed to be doing seated and active transfers throughout the day, each one of them helping to make him stronger and more in control of the world around him.

Few appointments I have been to in the last 2.5 years have been so positive (and there have been hundreds and hundreds of appointments, I kid you not, in that time). At one point as the three professionals talked amongst themselves while I played with Boo I had to tell myself not to cry. Not through the tiredness and frustration that often gets me down but in recognition that these three talented and caring women were talking not about what my little boy can’t do but all that he can and will. They talked about his determination and his many physical and mental strengths. And they had all come together to help him achieve that.

I can’t quite put into words the gratitude I felt in that moment. That people want to help. That people can see Boo as we do. That they don’t see obstacles but hurdles that can all be gotten over or around one way or another.

I couldn’t let this moment pass without recording it here. Partly because few days are like this and I can see many others in the future where I will need to remind myself of this one. And also because I want to tell all of you what I sometimes forget to say.

You know, Boo’s early arrival and complicated life since has taught me many things: humility; patience; that I have hidden reserves of energy and determination. It has also taught me gratitude for him, for those that helped him survive and continue to help him thrive. It’s a gratitude more profound than I ever thought it possible to feel and runs just as deep as any misplaced guilt I feel.

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9 thoughts on “Coming together

    1. mrboosmum Post author

      Oh no! My secret identity is now revealed to the world. Yes, I’m the Queen. No but seriously, how hard is it to get one of these appointments. We have had two since Boo was born. Two of hundreds and they are the two that have made the biggest difference to his and all our lives.

      Reply
  1. mylittledreamworld1

    Lovely post.
    I wanted to say that I read your posts, and what I read is a Mum who is trying her very best. I don’t think you are overly negative, but you are honest about both the good and the not so good. You challenge both yourself and the systems around us, to try to make sure that both of your children are given the chance to meet their full potential, whatever that might be. And I think that you are facing some difficult issues – limited budgets, so many professionals, working, and everything else, so that you don’t have much time in your day to do all that you need to do.
    I see someone who puts her children before herself, and I wish you could see that you also need this blog for yourself – your wishes, needs, hopes and dreams are just as important.
    Xxx

    Reply
  2. womanunadorned

    What a lovely post. It ought to be read by all professionals involved with special needs children. It shows what works, and is so positive about the people involved. A lot of professionals don’t realise what it’s like for the parents – they don’t realise that you’ve had hundreds of appointments with other professionals before they see you, and they haven’t any idea what that feels like. Without this insight, it’s easy to feel that all special needs parents are a bit whingey and ungrateful and feel a bit fed up with them.

    Reply
  3. Leigh Kendall

    I’m so pleased you had such a positive appointment. The joy shines through! I understand what you mean about having a different outlook on life since having a preemie – gratitude for the small things. Oh, and your blog doesn’t make you seem like you whine and moan a lot at all. You write eloquently and sensitively about your lives, and it gives an invaluable insight into the challenges, as well as the positive parts of your lives too xxx #PoCoLo

    Reply
  4. Alana | Rockstar Preemies

    Absolutely. The agony and the ecstasy, right? Funny that it’s the most heartbreaking stuff that finally allows us to see all the beautiful things, all the things worth of gratitude, all the little amazing milestones and miracles, and the countless ways that these preemie kids are just incredible, even if they have lots of obstacles in their way. I wonder if maybe the guilt shouldn’t even have to go away, all the frustration and sometimes-misery, because maybe that means the rest of it will go away too. Thanks for sharing.

    Reply
  5. Verily Victoria Vocalises

    So pleased that the appointment you had was positive. As you know I have read your blog for a long time. I have NEVER once considered that you whine or moan. This is YOUR space to write your feelings down and share things, I think you need that. You also need the support from others. Never feel guilty. This is your outlet and you deserve that with all that you do. Thank you for linking to PoCoLo 🙂 x

    Reply

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