6 months… well, 6 months and 1 day since my mum died.  I could write an essay about how I am feeling, but then I guess no one really wants to hear about it… to hear about what grief is, to hear about how hard it is, how shit life is without her… and how it just doesn’t get better.

I miss my mum.

I am eternally grateful to 2 lovely ladies who invited me and Matt to their wedding yesterday.  I had the most amazing day and enjoyed the celebrations.  My mum wasn’t far from my mind, but the passing of this significant milestone was softened by a celebration of love and union.

So anyway, we got back from our summer holidays (well 5 days) on the Isle of Wight last Friday, and I can confirm we have had the best family holiday ever!!

Seren (3yrs2mths) has completely overcome her fear of water… initially we were delighted because it meant we could go swimming with her and to the beach, but we soon realised that it was only going to cause huge problems because she lacks actual “fear”, aka fear of death and self harm. This meant she was literally running and jumping in to the swimming pool at full pelt, whether there was an adult waiting for her or not. She can’t swim, and the armbands she was wearing would not have saved her life. She bashed her head on the side of the pool twice, bit her tongue twice, and once jumped so far (unexpectedly) in the other direction to me that she sank perilously deep, swallowed loads of water and was sick!! She had an amazing time though, and truly relished in her antics.

 

Me on the other hand? I was so frazzled with fear and the responsibility of keeping Seren alive in the swimming pool that I am certain I gained a few grey hairs and some more wrinkles.  Luckily there is an app for everything and this photo shows me looking less like the crypt keeper than I do in real life ha ha ha!!!


The biggest surprise was Seren’s walking. She got to have more freedom on the sea front (no cars) and rewarded us by walking for MILES. I kid you not, we reckon she walked about 4-6 miles one day. She could run ahead, run off, go back and forth and do all the things she can’t on a narrow pavement where her behaviour can be harder to manage. She even climbed hills that Ava (aged 5yrs5mths) moaned about. In fact, Ava took Seren’s space in the double pushchair and Matt almost had a coronary trying to push her and Violet up the mountainous inclines! We were in Shanklin if anyone knows it.

Suffice to say I will be keeping my eyes peeled for deals at the hotel we stayed in… This was the first holiday since my honeymoon in February 2007 that I haven’t had to wash up or bring my own bog roll.  It was heavenly.  The hotel was well equipped and they were patient with the fact we had 3 young kids.  They had a baby monitor system with the phones in the room which revolutionised our evenings.  We got to put Seren and Violet to bed and Ava stayed up with us.  My dad came on the holiday with us too, which was an added bonus as I got a drinking partner (Matt doesn’t drink and I like wine), and he was great company for all of us and the kids loved having him around too.  The only (SMALL) negative was that the food at the hotel was a bit basic / very bland.  But I can’t complain, we were on a DBB deal and we haven’t ever done that before as a family of 5.

 

Seren was (of course) one of the main attractions in the hotel and was the cause for lots of conversation. The highlight of the holiday was when a little girl called Livia (aged 9) went up to Matt and said “does she have Down’s syndrome?”. Matt said “yes”, and Livia said “I have a friend in my class called Caitlin, she has Down’s syndrome too”. It was a magical example of recognition, understanding and patience as Livia delighted in playing with Seren, and was noticeably more confident and involved with her than the other kids.
I can’t recommend the IOW more – miles of sandy beaches and not at all crowded like I was expecting. The kids had so much fun, and so did I!!

Our final adventure was Blackgang Chine.  An adventure park which was very hilly, but perfect for younger children who, if they are like mine, simply love to explore.  Ava and Seren ran through the maze for ages… looking for each other and hiding from each other.  Seren learned a new word “duhduh” for “dead end”, which was amazing to hear.  She even got to see “mehmays” (mermaids), which is her latest obsession.  Her attempts at speaking are getting more and more pronounced although I am still the only person who understand what she is trying to say.

Oh, and I almost forgot!! The I got the BEST news while I was on holiday!! FoD has been included in the Early Support booklet published by the Down’s syndrome Association (DSA).  Check us out on page 76!!  We do need to get the wording changed though, because the FoD family was started by several of us, not jut one person.  Here is the link!
http://www.downs-syndrome.org.uk/images/stories/DSA-resources/health/early_support_down_syndrome_final_2013.pdf 

Now the next hurdle… FoD needs to be mentioned in the “new parents guide“.  Here’s hoping x