‘Like a room without a roof’

My husband and I have very strict rules about speaking too soon. You know the type of thing ‘didn’t they go to sleep well tonight’ ‘she’s not been sick at all today’ ‘we’ve not been to A&E for ages’ and so on. String all three together and you can pretty much guarantee yourself a wide awake, vomiting, A&E bound child.

Therefore it is one eye to the sky for falling pianos that I say quietly….things right now are great. Like really, really good.

It is one of the unspoken benefits of the lows being so low is that when the highs come they are exceptionally high and you make the effort to stop and enjoy the view.

There is nothing exceptional about why things are so good. Mojo’s health has improved slightly and the vomiting has subsided at least to every other day rather than multiple times a day. This gives us a bit more freedom to be out doing things and having fun without having to take three changes of clothes, sick buckets and old tea towels. It also means that she is enjoying nursery more, learning more, generally being much happier in her new setting. There is nothing more joy inducing after weeks of dropping her off and picking her up from nursery in tears (hers not mine, although on occasions…) to suddenly find her enthusiastically taking her place for circle time without a second look to me. Picking her up covered in paint and smiles at the end of the day, signing away with stories of who she has played with and what she has done is heavenly. Suddenly that long promised feeling of respite is tangible. I can finally revel in the knowledge that our little girl is properly attending nursery like all her friends. She was affectionately described by nursery this week as a drama queen and a flirt….NO idea where she gets any of that from!

So in keeping with our make hay while the sun shines approach we have had some simply awesome family time of late. Days out at ZSL London Zoo for Special Children’s Day where Imogen got to meet the amazingly lovely ladies from Singing Hands (akin to meeting One Direction for the signing child!) she had her face painted and chose the route we took around the Zoo. She taught her little sister all the animal signs and ate proper food (or animal biscuits) at our picnic. We have taken part in a community arts project building a giant cardboard tower with boxes and sellotape (search #PeoplesTower it was very cool), a completely inclusive activity where she was just one of the children helping. We’ve attended birthday parties, ridden the carousel at summer fairs and hosted countless tea parties for the dolls, pandas and assorted soft toys.

On top of all that we as parents have had some time out. Some time to be us as a couple and not just ‘The Parents of ‘ as all our letters arrive to. We celebrated 10 years together with a night at an amazing restaurant and hotel and it felt like a fortnight in the Maldives. Partly because we had time away but also because we left the girls with their grandparents and nothing bad happened, the tube feeding was uneventful, they both slept and they both had a fabulous time and suddenly my worries about how we will ever be able to expect our parents to look after two kids, one with feeding tube and constant vomiting evaporated.

What is even more remarkable is that with all this fun behind us we have so much more to look forward to over the summer. We’re headed to Cornwall with a gang of friends for a week, we have tickets for Elves and the Shoemaker ballet and we are even experimenting with a trip abroad at the end of the summer. In amongst all of that there is of course the inevitable weight of pending surgery dates and EHCP chasing to do as well as ‘the unexpected’ which we have learnt to be constantly expecting. However, our grass right now is lush and green (metaphorical grass that is, our actual garden grass is more untamed and brownish but one thing at a time eh!).

By the way my focus on Mojo for the purposes of this blog is intentional, despite rarely being mentioned her baby sister is in every way loved and cherished equally and has been busy being remarkable during this period too. Her achievements and spirit and personality are all being recorded for her in a diary for when she is older. When I watch them together I feel like my heart could burst with love.

For today I will end on a story which made my year so far that comes from the afternoon of the day my husband and I had away from the girls. We were walking around Nottingham arms around each other just generally being happy to just be in each others company without a to do list. At one stage he leaned in and kissed me, at the same time some teenage lads walked past bantering as is their want. It was a few seconds later that I processed that they had been talking to us. We’d been heckled to ‘get a room’ I’m not going to lie to you, we might have high-fived.

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