2018 – miracles, milestones & meltdowns.

So 2018 is coming to an end and we’re about to be launched into 2019. 2018 – the year I started to blog and the year I started to share about our different kind of normal so here’s a look back at the year we’ve had and a look forward to what 2019 will bring.

We welcomed the arrival of 2018 from a hospital room – we started the year fighting a chest infection and as Zac battled through, the rest of us hoped for a miracle. We didn’t have time to celebrate the beginning of this new year, we were thrown right into survival mode and after a weeks stay in hospital we were home – our warrior had defeated another infection – our first miracle of 2018. The rest of 2018 saw Zac keep in the best health he’s ever had – we managed our longest ever spell out of the hospital ward (11 months) and we’ve celebrated him get stronger month by month. We’ve saw his scoliosis half as we braced his spine and he’s had various new splints to help protect his legs. This summer he perfected his driving skills and is now a master with his wizzybug, he gained some strength in his legs and he has been able to play with more function. He got some new wheels, a new fancy bed and has started to use technology to work his tv by himself!! As we go through the everyday he amazes us with his strength of character, his bravery and his wicked sense of humour!

2018 saw us go through various tests and assessments with Caleb and although we’ve always known he was different, this year the word autism was thrown into our world. We’ve researched, set up aids to help and learned techniques to help Caleb understand this world that doesn’t come naturally to him. It’s a relief that we are now close to official diagnosis; it’s been a long journey with various professionals, meetings, appointments and many meltdowns along the way. I would love in 2019 to raise more awareness of autism so that this world can see my son for the super human he is. We’ve celebrated him win awards at school this year, proudly listened to his excellent reports and been super proud of the belts he gained at tiger class. As we go through the everyday he amazes us with his genius mind, his insight into numbers and the incredible details he notices.

We became a stronger this year as we all accepted our different. There is a relief in letting go and accepting we’re not going to have that normal life and it brings a freedom to just be our different and enjoy it. We had an amazing family holiday this summer where we chilled and had fun, we celebrated birthdays, we got tattoos, we went road trips, we had family nights, we’ve eaten a lot of cake, we’ve laughed and we’ve made memories. Me & Craig celebrated 10 years of marriage and have even managed to get away for a few date nights. I had my biggest challenge ever as I learned to get to grips with our bus, I gave up my part time job to be home full time and we celebrated the big milestone of Zac starting nursery. We welcomed carers into our home this year for a few hours a week and although I was initially apprehensive about this, these lovely ladies have become like part of our family as they look after Zac for a few hours so we can have some time out. Yes there have been hard times too – our weeks are filled with appointments, treatments and daily to-do-lists, there have been tears at the frustration of it all, there have been fall outs, battles and meltdowns. There have been weeks filled with craziness, days where it’s been exhausting, days where we are on edge waiting for the next hospital admission and days where we’ve not wanted to be different. But we take each day at a time and get through these times as a team. A new day always comes.

So we’re about to say “hello” to 2019 – I plan to set up a Facebook page for our journey, I hope to raise awareness of different, I hope to continue to share our story. I hope to be stronger, braver, fearless. I will continue to take one day at a time and 2019 it will be well with my soul. I will live my different kind of normal to the best I can!

*thank you to everyone who has supported & followed our journey this year! Wishing you all happiness for 2019!!

Advertisements

Merry Christmas to my sma mummies!

I started out my journey of being an sma mama with just me – I didn’t know anyone else in this position or anyone else going through the same whirlwind I was in the middle off. Through the power of FaceBook that changed – another sma mama from Scotland saw one of my posts and messaged me saying she knew of another mum too so she set up a wee group and we became the 3 sma mums. We messaged lots for support on all things sma. Fast forward a few months and we were a group of 5. Our friendship and support continued to grow and these girls have become a life line in my daily life – phone a friend & ask the audience. A few weeks ago we added another mama to our group who is at the beginning of her whirlwind making us 6 Scottish sma mums. It’s nearly Christmas – a time to be thankful for what we have and a time to believe in miracles. So my Scottish sma mums this is my thank you to you:

Right now we are a group of 6 mamas; we all have different backgrounds, different beliefs, different ways of coping, different family set ups and different views but the one thing we all have in common is we all have an sma warrior. Our sma warriors teach us all daily what true strength is and they are proof that miracles happen. We have only met each other a handful of times and yet I feel I’ve known you all forever. When we got dealt this sma card we were all searching for someone else who totally got it, someone else who would understand & for me that group of girls is you.

Some of our days are hard, some of our days are exhausting, some of our days are filled with appointments. Some days our backs are breaking, some days we feel guilty, some days we fight with our partners, some days we are stressed, some days we don’t even get through half of our to-do-lists. Some days we want to run away and some days end in tears. On those days we pick each other up, we tell each other tomorrow is another day. On those days we rant to each other, we feel each other’s pain, we get the emotion out – our phones ping all night and usually the tears turn to laughter as we dig each other out. On those days there is no judgement – we’re all in it together, we totally get it.

Some days we see amazing miracles, some days we meet milestones never thought possible, some days we smash through our to-do-lists by lunch time, some days we fall in love with our partners again. Some days we have no hospital, some days we get a break and some days we feel on top of the world. Some days we love the life we have and some days end with a smile. On those days we celebrate together, we feel so proud of each other’s kids. We send messages of support, funny messages and we share the highs. We’re all in it together, we totally get it.

Our group has become more than sma – it’s a group of mamas who are incredibly strong, incredibly brave and we have each other’s backs no matter what the situation. We message each other to say goodnight, we check in if someone’s been a bit quiet for a while, sometimes we send a novel, sometimes we just send an emoji, we message at the “3am roll”, we message from the hospital, we message with advice, we message with support, we message with rants & we message with high fives.

So girls I want to thank you all for the laughs, the rants, the tears, the miracles and the milestones we’ve experienced as a group this year. I feel privileged to call you all friends and love doing this different kind of normal life with you. I wish I could’ve gotten us all a spa day or a This Morning makeover but all I have is a thank you and Merry Christmas to you all. I look forward to smashing sma life with you all in 2019.

Love me x

Just keep swimming.

It’s been a crazy, busy few weeks for the Cams and life has been very stressful. We’ve had appointments nearly every day for the boys or myself, Craig has had a full on work schedule and it’s December which means there’s lots of extra things going on and lots to prepare for Christmas. Then there’s the everyday things to keep on top of like washing, cooking, housework and school schedules all in between the craziness! When we go through crazy, busy times like this people will often say to me “I don’t know how you can do this”. I’ll tell you my secret: I just keep swimming. There have been many moments where I’ve felt like I’m in the middle of the ocean drowning in the sea of appointments, to-do-lists and demands but I can’t let them pull me under – I just have to keep swimming. The more you keep swimming, the more the shore comes into sight. These crazy, busy times always pass, we always keep our heads above water and we always make it to the shore eventually – I have to remind myself of this when I’m in the middle of the ocean, then, I keep swimming. So there’s a few things I’ve learned while swimming through the crazy, busy times and these things make it easier to keep going:

1) Focus on one thing at a time: when I’m swimming through the ocean of craziness I can only see the day ahead – try to think about how crazy the next few days are and it’s too overwhelming and starts to pull you under. I make a list for the one crazy day I’m in and tick it off as I swim through the various tasks to be done. I may appear disorganised when you ask me how my Christmas shopping is going, I might come across as chaotic when I haven’t thought about the dinners or the school calendar or the weekend or the invite that’s 3 months away but trust me I do have it all under control – it’s just under control one day at a time because that’s the only way I can keep swimming.

  • 2) Talk it out: During these crazy, busy times I’ve found it’s best to keep talking things over. It’s easy to shut down when things get busy but that will only make it harder to swim through the craziness so keep talking, keep checking each other is okay. When we’re in the crazy ocean we usually go over the next days plans every night – where everyone will be and at what times. We don’t really need to have big, elaborate conversations during crazy times – that wastes vital energy that we actually need to keep swimming but we always check everyone’s okay. We go into survival mode and talk in bullet points; have you done this?, I’ve checked that, what do we need for this?, I’ve organised that. This is fine for crazy times because when we reach the shore and stop swimming we can be us again. As long as we keep swimming together it’s always okay.
  • 3) Take the pressure off: when we are in keep swimming mode we take all the extra pressure off. We don’t make any extra plans, we probably won’t see much friends and we only prioritise the essentials like hospital, school and work. If I send you a really short message or just an emoji it will probably be because I’m currently swimming through my crazy day – please don’t think I’m being rude – when I catch my breath, I will message again. When crazy, busy times hit us my freezer is stocked with easy dinners and some nights we even order a take away because I don’t have the energy or time to be cooking masterchef meals – take the pressure off – it’s not going to harm anyone for a few weeks to eat a few freezer meals! The world isn’t going to end if my living room hasn’t been hoovered or my washing is piled up or I’ve missed a phone call – I just need to take the pressure off in order to keep swimming.
  • So, I’ve made it to the end of a crazy, busy time, I’ve reached the shore. I’m tired, I’m drained but I kept swimming. I have my p.j’s on and glass of wine in hand and I’m catching my breath again. I will chill but only for a little while because I know for sure I will be swimming again – it’s the only way to stay afloat in this different kind of normal – just keep swimming.