It’s been too long since I last posted on here. Sort of like when you’re supposed to phone someone back and you leave it so long you’re too embarrassed to do it.
So where are we. Well we’re now one year into our family life and it’s the best thing I’ve ever done. In so many ways Jenna coming along saved me and gave me a life I never knew existed. Of course I never expected to be a single parent caring for a child with additional needs. But, then again I never expected to be this happy, to love someone unconditionally and do things for them without wanting or expecting anything in return.
About six or seven months ago we visited the Mencap family centre. The reason for the visit was to put our name down on their waiting list for both of us to attend one day a week. Whilst there I met another mum and her little boy who coincidentally live a few doors down from me. We swapped numbers and have been meeting up every few weeks. Over the past few months I successfully (to a degree) managed to organise and co-ordinate our therapists and draw up a manageable therapy routine for me and Jenna at home. Meeting this mum who’s pretty chilled gave me my first insight into family life with therapies, appointments, trips to the park, going out for dinner and everything else families do. I’m grateful for this. Then, out of the blue a few weeks ago we got the call to say we had a place at the nursery and could start a week later. When an AMAZING place, there’s a large playroom, specialist play workers, a sensory room and parent’s room. All of which wipe the floor with some of the private nurseries I visited before Jenna was born. So now one day a week Jenna goes to nursery and I gossip with the other mum’s and occasionally peer round the door to check everything’s ok.
Another amazing thing that’s happen to us recently was our stay at Martin House, a hospice/respite centre in North Yorkshire.
There’s a bit of background to this visit so please bear with me....
It started months ago when we were assessed for nursing respite at home. During the assessment our nurse recommended a referral for Martin House. She explained that they are a hospice that also provides respite care for children with complex health problems. She also said that because of my heart condition we’d almost certainly qualify to go (believe me it’s hard, I know a few mums who don’t qualify and I think they’d definitely benefit).
A few months later we went to visit, and although it was daunting (I couldn’t help but think of it as a hospice) the facilities were great and the people were so kind and friendly. Before leaving we booked to go in July (we’re entitled to about three stays a year for a few days at a time).
July came round and little miss picked up a virus and ended up in hospital so we had to rearrange. Last week a few days before our rearranged stay little miss picked up another bad virus. So, back on the ward I sadly prepared myself for the phone call to cancel our stay. Then, our neurologist came to see us. Maybe because I looked plane rough or maybe she just felt particularly kind but for some reason she took pity on us and negotiated with Martin House for us to go, as planned but on the condition that Jenna stay in her room.
So, we went and it was AMAZING. Jenna had music therapy, sang, played, recovered, smiled, met lady gaga the goose, stroked a turkey and stuffed her face with chocolate cake and custard. I just chilled, slept and enjoyed watching Jenna have an amazing time.
I will always be grateful for our first stay. It gave me a little time to reflect on the past year and how far we’ve come. Yes, I’m scared day and night for Jenna’s health. But, that isn’t all of who we are. One year on I’ve realised we’re two very lucky ladies with an amazing family, lifelong friends, new friends, support and a hell of a lot of living to do xxx