A Day At A Time

Hi everyone and welcome to another instalment of this blog which is basically all about me trying to raise awareness of Stickler Syndrome, promoting our fundraising efforts by taking part in The Guildford Triathlon at the end of May for SCBU at The Royal Surrey County Hospital and also to keep folk updated about the general progress of the beautiful Phoebe and Sam and their Mummy and Daddy.

Firstly, Wednesday evening saw youngest daughter and I do our regular swim. I had spent most of the day with the twins and it had not been the easiest of days. The thought of going swimming was really the furthest thing from my mind and about the last thing that I wanted to do. However, I didn’t want to let my daughter and loyal swimming buddy down and I know that, to do the triathlon and the twins justice, I need to just get on with it so that’s what I did. I didn’t time myself but just made told myself to get the 20 lengths in and then it was done. In the end I swam 30 lengths, adjusted my style of swimming by putting my head under the water more often which seemed to make me go faster, and felt rejuvenated by the time I had finished. Swim buddy Rosie also swam 24 lengths….this from a girl whose target just 4 weeks ago was to swim 10 lengths. She’s a star!

I have also been proactive on the fundraising front by contacting businesses and companies to see if any of them would consider making a donation to our chosen charity. I posted letters two days ago and I have already had a phone call from Tesco offering their support! They are going to donate a hamper which I will be able to use as a raffle prize. How brilliant is that?! I was delighted and a little overwhelmed to receive that phone call if I’m honest. I could have cried. What a wally!! It does mean, of course, that I will be organising a raffle, and possibly another event, after our triathlon efforts. You have been warned!

Now, onto the twins and their progress. I am delighted and very relieved to say that they were both weighed yesterday and both are doing well. Sam now weighs just under a stone(!) and Phoebe has gained too and now weighs 9lbs 1oz which is a huge relief following her disappointing weight gain of two weeks ago. I’m sure Mummy and Daddy are very relieved with that news. Phoebe has also had another appointment at the eye clinic where the results were inconclusive. She is very young to accurately assess. Suffice to say we have to go back in 3 months time.

It’s been a very trying time for Mummy and Daddy and the extra concerns about young Phoebe have made life difficult at times but, one thing is for sure, Mummy and Daddy love those little ones so much and, whilst things must feel daunting and scary at the moment, things will get better. The babies will eventually start to sleep through the night, Phoebe will start hitting her milestones and life will start to return to some kind of normal….although not the kind of normal that they are used to. Those days are long gone and life will never be the same again! A daunting prospect I am sure but an exciting one.

Sleeping beauty

Handsome boy and we love his shirt!

Twins💗💙 10 weeks old

Bright lights and bright colours set up by Mummy as a form of sensory stimulation for Phoebe…….who loves it as you can see…….

Parenthood is tough. It’s wonderful but it’s tough. Just when you think that everything is going ok, something else comes along to remind you to never take things for granted. Parenthood is an emotional roller coaster at the best of times and even now, some 32 years after becoming a Mum, I am still learning. Being the parent of a child with any form of additional needs is incredibly hard. I know that from my own experience. The constant stream of medical appointments, the constant visitors and phone calls, the never ending forms and paperwork that need completing, the permanent worry that you aren’t doing enough, that you are letting your children down is always there. However, children, with or without special needs, add so much joy and love to our lives constantly. The worry never really goes away. The worry just changes. As Phoebe and Sam’s Nanny, I can honestly say that I am in such awe of their Mummy and Daddy….but especially of their Mummy, my own special baby, my first born. Her strength and determination never cease to amaze me. Her courage and bravery often go unnoticed. She is thoughtful, kind, generous and loving. She is a wonderful big sister and a fantastic daughter. She is now an amazing Mummy too.