My Weak Muscles

Rosie is so ready for school.

Not to say she hasn’t loved the last few years with her daddy making friends with anyone who’ll chat to her,  taking life into her own hands at the skate park or causing mayhem in the aisles of Tesco, but it would be fair to say she’s ready for new people, sights, toys and experiences.

Iain and I deliberated long and hard about the type of school Rosie should go to. We’ve been round in circles deliberating over the pros and cons of various scenarios. Asking ourselves ‘what’s right?, what’s best?, what’s fun?, what’s safe?, what’s important?, what’s available?, what would Rosie want?, what do we want?, what do we not want?’ – an endless list of questions. There was no obvious answer and even now we wonder whether we’ve made the right decision.

We decided that Rosie’s health had to be the number one priority above anything else. If she got a cold at a regular primary school, she would likely be out of school for weeks, potentially ending up in hospital and ultimately missing out on everything.

We’d previously experienced this with a mainstream nursery last year, she did about four sessions, fell ill, was sick for about six weeks then ended up in intensive care. We removed her from the nursery deeming the situation too high risk and never went back. Yet she loved the little people she’d met and new experiences she’d had in those four days.

It was for this reason we decided that a special school would be right for Rosie, right now. We felt she would be less likely to catch coughs and colds whilst she’s still young and vulnerable, have access to the right equipment and trained teachers to help her if she got into breathing difficulties.

Our dilemma is that Rosie is bright and eager to learn and the school she’ll attend is very much for children with learning difficulties. Rosie likes to be challenged and she picks things up quickly. Yet, her physical disabilities mean she needs 1-2-1 support for every task and her speech, although has come on a long way over the last year and her vocabulary is wonderful, other kids lose patience with her because they don’t understand what she’s trying to say. Rosie finds this frustrating and upsetting.

Many of our friends in the Nemaline Myopathy Facebook group with children of school age all send their children to mainstream schools – are we being over-cautious? I really don’t know.

---

Sunday night – getting ready for school

Rosie went to bed excited about her first day at school. I think we’d managed to put her mind at rest about most things.

The iron came out as I attempted to attach little name tags to all of Rosie’s school clothes – she is the only person I would ever get the iron out for!

Later that week I was reminded why I officially hate ironing when all but one came off in the washing machine – agghhhhh!

Iain spent the night creating a helpful ‘how to’ for the teachers. Rosie had been getting a bit anxious in the days leading up to school. ‘Will they know how to pick me up? Will they know how to feed me? Will they be able to get me things?’ were frequent questions. We’d told her we’d do this to put her mind at rest.

We started getting everything ready by the front door: school bag … check, spare feeding peg set … check, suction machine and catheters … check, all about me sheet … check.

We all went to bed early that night excited about the new adventure ahead.

---

Monday morning

We were all up early. From now on we have to be ready for the school bus arriving any time from 8:15am so it’s all hands on deck, more preparation the night before and no time for our silly morning games. We’re all on a morning mission.

We got Rosie into her school uniform and she said she felt very grown up!

We sat in the lounge and opened some cards and presents that wished her well for her first day of school.

Rosie’s granny and pappy came round too and we all nervously waited for the bus to arrive.

We’ve been biggin’-up the school bus throughout the summer, ‘it’s going to be super cool and so much fun, Rosie!‘ we kept telling her. Luckily it had sunk in and she wasn’t bothered one bit about it. I’d had reservations about the bus – she’s only 4, she’ll be on her own, who’ll be on the bus with her?, will she be safe?, will they hear her if she is struggling over the noisy engine?, what ifs … what ifs … what ifs!

When the bus arrived we were all delighted to see one of Rosie’s friend from Springboard, Edith, and discovered another friend, Archie would also be on the bus later that week too. Phew … that was one of many concerns dissipated.

It took about 20 minutes to get her set up on the first morning of school. The bus blocked our road as anxious parents tried to get their own kids to school – that was pretty stressful, although everyone was really lovely and accommodating in our street.

We have our little routine now where we wave and blow kisses to Rosie through the window of the bus as she gets strapped in and wheels firmly locked in place. Then as the bus pulls away Iain and I leg it to the end of our road where we wave her off round the corner. I love this part of my morning.

There’s a lovely little boy a bit older than Rosie on the bus who’s name we don’t know yet, and every morning as he’s seen us wave and blow kisses to Rosie, he does the same back to us. So now we’re waving and blowing kisses to literally all the kids on the bus each day. I love it and I’m so glad we decided to let Rosie get the bus. It was a big deal for me to agree to this, but it’s actually one of her favourite parts of the day. I really must learn to let her go.

Monday morning was the toughest. As the bus pulled out of our road I saw her face go from excited wide-eyed to worry as she realised she was on her own. Iain and I tried to remain upbeat, waving frantically and all smiles, but as soon as she was out of sight I couldn’t hold back the tears any longer. I will never forget her scared little face.

Iain followed the bus to greet her as it approached the school. He’ll continue to do so until we feel the time is right. We’re lucky to live close to the motorway and that her new school is only one junction away taking about 20 minutes, traffic permitting. Iain called me once she was in school to say she’d loved the bus ride – I was so grateful to hear that after I’d got to work only for the tears to flow once again as soon as the subject of Rosie going to school arose.

She’s already grown in confidence this last week. She has been given the important role of ‘register monitor‘ which, once the form is completed with who’s in and out and lunch arrangements, she delights in taking to the main reception each day – chatting to people in the corridors en-route. Everyone seems to know of Rosie already … I wonder what mayhem has she been causing!

Every day Rosie comes home with a little red book complete with a few lines about what she’s been up to. I love coming home from work to read all about her day, mainly as the response I usually get when I ask her what she’s been up to is ‘I can’t remember‘ – at least I’ll get sense from that little red book!

Rosie has enjoyed her first week at school and a steady routine is proving to really work for us. Who knew life is so much easier when you know what needs to be done by when!

Anyway, it’s Sunday night and so the routine starts over. Week two of school, here we come!

Save

Save