Where to begin?

Published October 31, 2011 by swanfreddie

So its 9pm & after a very stressful day with 2 poorly children (one of whom is sat on me now as she can’t sleep) i have decided to start this blog. I don’t expect anyone to read it but i just need away to release all the stresses im feeling right now and i figured typing on to an empty page with  no-one to tell me what i’m feeling is wrong or stupid made sense.

The whole reason I’m writing this is down to my gorgeous little boy. He was born 17 months ago with an unknown syndrome. Since then my life has felt like a roller coaster ride which seems to be having a lot more downs that it does ups.

A quick overview of Freddie.

Freddie in his new glasses

He was born at term with low set ears.  He had problems feeding, maintaining body temperature & blood sugar levels. He went onto have a hernia operation at 1 week old & was diagnosed with a milk protein allergy & reflux at 8 weeks. Freddie began being fed via a nasogastric tube at 8 weeks as his weight had dropped very low & he just wasn’t feeding as he should. Over the next year we learnt that Freddie had an atrial heart defect, stridor and tracheal tug, a retro position epiglottis and micrognathia, high arched palette,  adducted thumb, unusual index fingers, clenched toes and prominent heels, stiff hips, astigmatism & long sightedness, a mixture of a metopic suture & trigonocephaly with Plagiocephaly, eczema & myoclonic epilepsy. He also had a mickey button fitted.

 At 6 weeks he smiled & i felt like all we were told by the doctors of him having problems growing & developing must of been a mistake. But as the months passed Freddie didn’t meet any milestones. So Physio, S&L, & OT started to help us. Now at 17 months he’s able to smile, sit up for a up to 10 minutes unaided, eat a small amount of pureed food, blow raspberries & make some shouting noises. He has never really laughed properly, pick up a toy, bared weight on his legs, done a push up on his tummy or babbled. All the milestones many parents take for granted.

The past 17 months has been so much for us to take in & to understand. As well as caring for Freddie he has a 2.5 year old sister. Her childhood hasn’t been as i wanted. When she was born i thought of all the things i would do with her & the places we would go to. Instead we barely leave the house, we sit & administer Freddies medicines & do his therapy. Our days never change. She barely gets any 1 on 1 time from me as Freddie takes up so much of my time. But she never complains or begrudges Freddie in any way.  I watched her playing by herself the other day & longed so much for Freddie to be there with her, both up to mischief together.

Lately i feel totally lost with Freddie. He is constantly on my mind. When he’s in bed i sit & think of how i can help him & why it’s happening & it’s all getting a bit much for me. I’m hoping starting this blog may help relieve some of the pain that i feel.


11 comments on “Where to begin?

  • welcome to the world of blogging and your Son Freddie is a handsome fellow.

    the roller coaster will have many ups and downs along the way but there are lots and lots of people out there to sit along side u and scream,cry and laugh along the way.

    you wrote really well i hope u carry on and look forward to reading more about you and your family


  • Hello and thank you for sharing your not on your own at some point or another we all feel like this , we are not here to judge as we all cope in differant ways no way is right or wrong it is good to but your feelings down on paper as once u have said them you can begin to move forward , it takes time but with the right support and help you will xxxxx think about what you wanted to do before all this happened and set yourself small steps to achieve this don’t be afraid to ask for help it’s the best thing I ever did. Go on to read my blog Archie story and I hope it will help some how take care and remember to look after you as well or you will burn out luv patsy

  • What a great first blog post. I hope you enjoy blogging as much as I do, I find there is something very relaxing about sharing my story. Plus I have made connections with people I would never have met if I hadn’t shared our story.

    I look forward to reading more of your posts in the future.

    Jane from This is No Ordinary Kid – http://thisisnoordinarykid.blogspot.com/

  • Thank you for sharing about Freddie. I hope that writing helps. I find getting it off my chest instead of keeping everything bottled up quite therapeutic. It sounds like things have been quite difficult for some time and I can completely relate to the difficulty of having two so young and so close in age. I can’t really do or say anything to change your situation or to help but just remember you are not alone and we are all here to listen if and when you want to offload. And although there is a whole heap of words up there that I don’t understand (microganthia, trigonocephaly), I can understand and relate to a lot of the feelings and anxieties you are feeling. Take care. Xx

  • Just wanted to say Hi… Your blog took me back to when Jacob was a baby. He’s 8 now and has an undiagnosed learning disability. His problems are different to Freddy’s but he missed all his milestones too…Still has!! I stopped taking him to toddler groups like I did with Charlotte his big sister because it broke my heart to see the other babies playing, crawling and sitting up. I wanted to smack the Mum’s who used to moan about “what a nightmare it is now he’s walking”..God I could go on and on!!! Hang in there and I’ll follow your blog

  • I have 4-years old boy with syndrome. We don’t know name. Yet. I totally understand your feelings. And your fears, and hopes, and dreams, and pain. I can’t do much for you. Just want to tell you that you are not alone. And I want to send kisses to your beautiful boy.
    Always remember – you are not alone. There are many of us with you 🙂
    Sorry for my English, I am from Serbia.

  • Hayley, what an honest report!
    We all have days or weeks like that I think, we all want more, or answers, or help, or support, at times when it simply cant be there.
    I think we’ve also all felt the same frustrations and had the same worries, I dont know what to say other than, look for the rainbow on the days when it shines, cause it will on some days, and those will be the ones when you feel the strongest.
    He’s a beautiful little boy, and he’ll make you proud with every little virtual step he takes, or bridge he crosses, and his big sister is a star! Siblings of SWANs often do just get on with it and help and support us, because they see early on how much we need them. They might have a different childhood, but my other kids are so understanding and tolerant of peoples differences because of thier brothers experiences. It helps to mould them as people too.
    As your daughter grows she will experience different things with the help of school, support groups etc. She won’t miss out.
    Keep your chin up and never forget, no-one loves your children like you do, no-one looks after them like you do, you are the best thing they have and your effort is always good enough for them!
    Tracy :o)) x

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