Saturday, March 10

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.
I am really glad it is a home visit so Wriggles will be in her home environment so hopefully relaxed and at ease. When the referral was first placed it was primarily for feeding issues, which are still there, but I do wonder if now she is 18 months it will also be to assess her (lack) of speech. She has a nice repertoire of sounds, although largely without meaning, and has at long last after a slightly worrying period of blank looks suddenly began to show signs of understanding and grasped the concept and actions of hello/goodbye, "no", any form of praise, recognised her name and responded, been able to memorise sequences and has demonstrated the actions for 'Dingle Dangle Scarecrow' and 'Wind the Bobbin Up' without prompting and finally today, signed "all gone" not once, but twice and in context. Months of Mr Tumble and baby-signing have paid off! Alright, it is just one sign so far but at least I won't look such an idiot flapping my hands around to a child who looks at me as if to say "mummy, what ARE you doing? Calm down will you, my friends are staring." I am nervous about the appointment and the referral as really we and they can't win either way. If they walk away chipper I will be cross that after months there is no help, and if there is help forthcoming I will be resentful that once again we will be thrown in to the cycle where most of my week-days off work are taken up sitting around Outpatients, which is no fun for me nor Wriggles and also is an utterly rubbish place to forge new and lasting friendships with other parents and babies, which has been a faff in establishing partly due to the merry-go-round of previous appointments and admissions rendering it both impossible to meet up with people and also sending my confidence and mental state to rock bottom, thus reducing myself to a quivering wreck in social situations. Of course whatever help professionals think Wriggles need, I will happily accept and not begrudge. Needless to say she is my world, it just saddens me that I could not be the one to teach her the basics of feeding and language or carry her to term to give her a better chance of establishing them in probably, a more routine way. Help-wise I am cynical I will freely admit, as since the feeding was recognised as an issue and not just me being overly dramatic, I have not heard a new suggestion or method in the past seven or eight months that I haven't already put into practise, either by common sense or with help from other professionals we come into contact with.

The final thing is the arrival of the gaiters. These are to assist this the high-muscle tone present in predominantly Wriggles' left leg. Like the SALT, I am really glad that they think they have something that will help, it is just still a surprise that my baby needs help. Surely she is a genius?! It was one thing hypothesising and agreeing but now they are sitting in a carrier bag metres away from me and the dawning that we have to use them, it is a different matter. Wriggles is unsurprisingly not keen. She has my full sympathy and then some. The physio has been honest; these are our chance before a splint. I saw a splint on Friday. They are not the slim things I remember from NICU. Of course they are not; Wriggles and other children have grown enormously from the dots in incubators. Splints are rigid and quite prominent. 
Come on baby girl, lets get this thing sorted!


  1. Good luck with the gaiters. You have a great attitude - what a lucky little girl to have got you as her Mummy.

  2. Hugs to you Amy mouse, I bet you'd survive even if your rent was increased ten fold and you both had splints ;-) x