My Happy Girl

Today, I had some friends over. This isn't exactly unusual as we often meet friends either out or in, singularly and in groups. Today's friends are those I don't see every week, and the four of us adults lazily amused my adorably smiley little girl who was clearly in her element basking in the attention of quadruple what she is used to. For a bit it made me a bit sad that my family is not the "traditional" idyll it could have been if things had been different. My friends visiting have been on our journey since the beginning, and the two of them that I have known for longest were rocks in the long PICU days, often giving up time to come and sit in the claustrophobic room with my comatose baby on the brink. None of them have children yet, and as much as I love my mum-friends who save my sanity and make days of the week go quicker and more enjoyably, it is also refreshing to be with caring childless friends who don't have the worries, competitiveness or strains of child development, or the lingo that goes with it. Questions or comments were made innocently, curiously and sympathetically.

"Why isn't she walking yet?"

This is a question which normally riles me, brings my defences up and prickles at my soul. Yes, I know she is nearly 2, I know all her peers are walking, I know maybe she "should" be. But actually, today it didn't make me cross or upset. I explained about the prematurity thing and corrected age and that the repetitive illnesses have delayed development on top of any genuine delays. I explained about the muscle tone and that that was why we had multiple input (which I think baffles many people, because Wriggles looks so perfect they can't imagine why she would need it) and that we were still sort of in limbo to see if it was worthy of a diagnosis that may have more long term implications or whether it would sort itself out. That it may prove to be more positional, more muscular, more structural or more neurological or a combination of some or all of the above.


We all looked at the happy squwarker, who was troubling the book box.


It wasn't bothering her.

She didn't care.


Everywhere we go we receive compliments as melts everyones hearts and charms the socks off people. She really is the most lovely little person I could ask for, and I know our family and "urban family" of extended friends all cherish having her, us, in their lives. When you think of a medical problem, or situation, or label, a certain stereotype can spring to mind. Before this whole journey, I'll admit maybe I was biased to. But over the last 22 months, everything I ever thought has been challenged and I've drawn up a whole new set of preconceptions, of expectations and pleasures. Seeing beauty in things and people and celebrating wonderful children who might otherwise have lead very different parts. We've met those with far more severe limitations and those like ourselves who straddle the border between one camp and another. Those who may well have been in for a much-rougher journey but by miracles of fate and luck, have actually bypassed any hardship and unexpectedly followed a very expected pathway. And all of their parents feel the same way about their children as I do about Wriggles. 


It's so easy to become pre-occupied with labels and names, and sometimes they are necessary and very positive. They open doors to help, provide support for everyone and give answers. Sometimes though they can overshadow the person that has been labelled though. The smiling child.


As I explained today, I can't predict where our future will take us. Sometimes I suspect it is one thing, and sometimes I think another. I'm not sure I would be overly surprised either way as to getting answers or not getting answers, especially as our wonderful physiotherapy team have always been very gentle and honest with us. I have to put my faith into a professional which although I can grasp the basics of, have no idea of the more technical or complex aspects. I can put my faith in my little girl: that bit is easy. But strangers? Will they know how special she is, how much she deserves? That is the hard bit. I can take not knowing when things will happen because I trust they will. I just want everyone to see the best in my happy wrigglebottom whether she gets a new "name" or not.

What would you call me?

Winging It

After a period of uncertainty, a wobble and some time off working, last week I finally heard what was happening in my job. Namely that it wasn't happening. Unless divine intervention hands me a new contract, as of the end of June I will be made redundant.

It is both a relief and terrifying.

A relief because I will have the pressure of trying to do it all and have it all taken off.

A relief because I will be able to drop the mask of pretending it's all hunky-dory and of course I can do everything. In five minutes. Five minutes yesterday that is.

A relief because I will be able to feel more of a mummy rather than someone who says goodbye several times a week.

Terrifying because I haven't been with Wriggles 7 days a week since she was about 6 months old (illnesses notwithstanding).

Terrified because I am worried how I will be judged-yet another single parent reliant on the welfare state for a period of time.

Terrifying because I am scared I will not be up to the job.

Terrified because it feels like so far I have been winging it and it is just pure luck we have scraped through.

What if I can't entertain her all the time? What if she's bored? What if she misses going to the childminder and is in a grump with me? I can't provide a cat or a garden swing. What if when I have no escape I tip back into fighting demons every day? What if it is years before I can contribute financially again?

Part of me is really looking forward to some time with my little girl.She is growing up so fast and it makes me sad to loose out on her new discoveries, even for 24 hours a week. When I drop her off in mornings and she instantly goes to the toy box and waves me off it makes my heart ache. Whilst I am proud of her Independence and assurance, I miss the closeness and warmth of my little baby I carried everywhere. When we are at home, she is vehement in that even though she wants to do everything by herself, she wants me to be watching, hovering in the background to jump in and rescue her or praise her achievements. I am looking forward to doing that all the time, and am hoping without the stresses of work I can throw myself into it without distraction.

But part of me is worried and feels like a failure if I am not putting something in to the bank of my own doing. I know it's just a stereotype but it does worry me that I will just be chalked up by people and written off. I never ever envisaged that I would be in this situation. I feel at odds with myself-the idealist black-and-white view against the compassionate. The maternal urges against cold hard reason. 

Sometimes being a mother, and a single mother at that, is like having two voices in your head constantly arguing. Go to bed, voices. Please.

Mixed Feelings

This week several things happened which I have very mixed emotions about. None of them are huge things and were all things I either half-expected or knew was going to happen.

Following a letter from the council telling me that in line with new government regulations my rent would be going up nearly £10 a week which is quite a lot in my budget, I have caved in and applied for some housing benefit. Although my flat is privately owned, it is council managed. The rent between two people would be quite reasonable, but as I am only one and not on a huge wage, any increases are more than usually unwelcome. I have thought about it on and off since Wriggles was born and I knew I would be a single parent, but with working part-time and topping up with tax credits, I have been proud that so far I have been able to manage and cover it all. It made me feel more independent and that I was doing something good for my family. With an increase though and none in my wages, it is just too tight and I need some help until Wriggles is older and I can work more. At present even if I took on extra hours, the cost of childcare will render these useless especially with no local family to soak up babysitting duties. Plus I would be (more) shattered. Although I'm relieved to have such a system available when people do just need a helping hand, I wish it wasn't me having to use it. I know it's not forever, it just feels like falling into another stereotype.

When I got back from doing this at the library, I found a letter I have been expecting since October. It is Wriggles' referral to Speech and Language, announcing a home visit in just under a fortnight.