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!!

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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.
  • Fish Finger Friday.

    It’s Friday – this means at around 4pm I’ll be switching my oven on and firing in fish fingers. I’ll then add toast and peas – this is Caleb’s Friday tea! This tea has become a signal of the weekend in our house, it’s a sign that we’ve made it through another week and we’re all doing ok. I breathe a sigh of relief as I dish up these golden rectangles and buttered toast – my back up will be walking through the front door very soon and for the whole weekend we’ll be a two man team. I am aware that this is not the most nutritious meal or the most culinary challenging but it’s become Caleb’s Friday thing and I’m not prepared to battle over food on a Friday so it’s far easier to keep the peace and accept this meal is fine for Friday nights.

    Being on the autistic spectrum can bring many different issues surrounding food for Caleb; sometimes it’s the colours, sometimes it’s the textures, sometimes it’s the temperature or sometimes he just simply isn’t feeling in the mood for that particular thing so completely refuses to eat it. Tomato soup is too orange, as are carrots and diluting orange juice, beans have a “bumpy” texture, spaghetti is too slimy, ice cream can sometimes be too freezing but other times it’s okay. The rice cakes have to be the purple ones and crisps are way too crunchy and loud in your mouth so they are a no go. Dinner times can be very challenging in our house as I try to make sure he eats nutritious, healthy meals. We use a variety of techniques including lots of encouragement, physical help and sometimes a timer to make it through a meal!!

    Then there are issues surrounding where to eat; it can be difficult to eat in public places because there’s lots of noise and distractions, eating in a big group can also be very challenging for Caleb. So if you see us at a cafe or a birthday party or even the school dining hall you will notice Caleb probably not eating very much – we try very hard to work on this but I’ve learned you have to pick your battles and sometimes being out in a public place is not the best place to have the battle. Sometimes it’s easier if we don’t make a fuss or draw attention and he can eat happily at home where he is in his safe place.

    So for some reason fish finger Friday became a thing and every Friday when I pick Caleb up from school he’ll say “I can’t wait for my Friday tea”. It seems to be a comfort to him, a familiar routine to start the weekend, it’s a tea he eats with no fuss or battles and it makes him happy. While we battle through every other meal time I’m happy to let Friday go, Friday is a chance to chill, we both surrender in the food war for a night and fish finger Friday is just another part of our different kind of normal!

    An open letter to my wonderful parents.

    Life with my two boys is very full on; one of my boys has SMA and the other is on the autistic spectrum. My days require planning, organisation, a sense of humour and an extra pair of hands! Most days this extra pair of hands is the hands of my wonderful parents so here’s my open letter of thanks for all they do to get us through the everyday:

    To Mum and Dad,

    Thank you for being there for me and my boys day and night, for the making mad dashes to our house in the middle of the night so we can rush off to hospital in emergencies and for helping out in the mornings with the school run. For the afternoons where you keep me company so I’ve not had to spend the day in the house by myself and for the evenings you spend with the boys so me and Craig can actually go out and remember who we are. Thank you for answering the phone any time with “We’ll be there in two minutes” and for cancelling your own plans to help us when our schedule has been thrown into turmoil.

    Thank you for the dinners that are cooked when our hospital appointments run late, the basket of ironing that has been done while I’m busy doing physio routines, the floors that are mopped when I’m answering the dozens of phone calls and the washing that is sorted when we have a sickie day.

    Thank you for learning how to do tube feeding so that I can have a break sometimes, for helping with physio, for researching and giving me ideas on how to deal with autism and for adapting everything so that the boys still do all the normal things that boys do with their grandparents; the trips to the café, playing at the park, swimming, board games, reading stories and camping out.

    Dad, Thanks for taking the time to help me with my biggest challenge yet – learning to drive a wheelchair adapted vehicle. Thanks for fixing everything in my house – walls chipped by wheelchair wheels, shelving in the cupboards, breaks that have occurred from melt downs, adapting equipment, putting mirrors and televisions on the wall – I don’t think there’s anything you can’t fix! Mum, thanks for being my sidekick at hospital appointments, for being the extra pair of hands and eyes I need when the two boys are together. You are the person who listens to everything and gives the best advice. Thank you for being the person who brings sunshine to our days.

    I don’t think I could ever thank you enough for all you do – we are so very blessed to have you as vital members of our team. Thank you for always supporting us, always believing in us and thank you for showing us it’s absolutely okay to be living our different kind of normal.

    From me x

     

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    Goodbye world of “real” work.

    For the last few years I have gone to “real” work once a week to keep myself in the “real” world. As a busy mum to my two crazy boys I thought that having a day away from the house where my mind wasn’t consumed by appointments, phone calls, treatments and demands was a good idea. And in the beginning it was a good idea but I’ve struggled for the past few months and so this week I worked my last shift as “Amy the pharmacy assistant” and said goodbye to the world of “real” work.

    When Zac was first diagnosed I was working two days a week in the chemist but the appointments quickly piled up and took up most of my week days plus we spent so much time at hospital during periods of illness that I had to reduce my working hours down to one day. This one day was an escape – a day to be me, a day I could use my brain to focus on something other than boys and a day I could contribute to the household finances. I was lucky enough to work with a group of lovely ladies who supported me constantly; they gave me company & chat and allowed me a break from the everyday. They let me hear that life goes on outside of my different and I enjoyed the time away and felt a sense of doing something other than being mum.

    However, as the time has gone on it has become more difficult to do my one day of “real” work; the organisation that goes into leaving the house for one day is like planning an expedition, the appointment lists get longer and longer, the phone calls & messages are never ending and in actual fact my one day away from the house was stressing me out more than ever! Instead of giving me a break my mind was going into overdrive thinking about the things I’d need to do when I got home, instead of feeling a sense of achievement I felt a sense of panic at what I had missed and still needed to catch up on. I was coming home exhausted and it got to the point where I felt it wasn’t beneficial to anyone for me to be at “real” work.

    So I’ve made the decision to leave the world of “real” work and focus fully on my boys. It feels like a huge relief. Am I worried about losing my sense of identity? Am I worried that people will judge me for being full time mum? Am I worried that I might be driven insane at home? Am I worried that my brain will only be concentrating on all things boys? Yes I suppose I am worried about all of those things but right now I feel it’s what’s needed for our family and I have a few ideas which I’m looking to start up in the new year but for now I’m taking some time out to just live our “different kind of normal”.

    *thank you to the loveliest ladies at work who helped me through every Wednesday & constantly supported me & my boys. Your chat & company made it all easier 😊

    *thank you also to my amazing husband who continually works hard in the “real” world so that I can be at home with our boys – you really have made my dreams come true 💙.

    Why is He in That Chair?

    Just a few weeks ago we celebrated the miracle milestone of Zac starting nursery.

    Having SMA type 1 meant that this was a milestone we did not know if Zac would see and although it was definitely an occasion to celebrate, it also brought feelings of fear and anxiety for me as a mama.

    Zac was diagnosed at 17 months with SMA – a neuromuscular, life limiting condition.

    Since then I’ve gotten used to the stares, the questions and the interest in my son’s life. I’m okay with people asking most things and I like to answer as honestly and as openly as I can.

    I don’t mind people asking about Zac’s feeding tube, his physio routines, his hospital visits or his treatment but I do find people asking about life expectancy is a step too far.

    I can answer these questions as a mum.

    I can choose which ones to answer in detail and which ones to ignore and I can choose to protect Zac in my answers but I was afraid nursery would bring questions that Zac wouldn’t be able to answer and that it would also cause Zac to ask his own questions.

    The day for starting nursery arrived and I wheeled Zac’s bright green superhero wheelchair into the foyer and then I transferred him from this chair into his big blue nursery chair.

    I fitted on his tray so he could access the toys and we were good to go meet the other children.

    “Why is he in that chair?” one curious little boy asked.

    I answered simply “Zac needs his wheels to get around the nursery as his legs aren’t strong enough”. I waited for the further questions, waited for their reaction, waited for the curiosity to think up something else but all that followed was “oh do you want to play”.

    In that single moment I saw a group of children who didn’t need to question and they didn’t need answers – they simply accepted Zac for who he is.

    We’ve been at nursery for a few weeks now and since that first question there have been no more.

    Zac’s chair is always surrounded by friends to play with; the children excitedly bring him cars, trains and building bricks to play on his tray.

    They don’t question Zac’s ability and it’s almost like they instinctively know; during pumpkin carving a little boy came over to Zac and helped him roll the pumpkin when it was his turn, a little girl brought Zac the small light weight trains because in her words “Zac has tiny hands so likes tiny trains”.

    I see these lovely children accepting Zac every day.

    They don’t need to know what his condition is, they aren’t interested in his medication, they don’t get weighed down by worries of his future, they just see Zac and want to play and have fun.

    I’m sure as Zac gets older there will be questions from his friends as they start to realise he’s different but for now it makes my heart very happy to know that Zac is accepted for Zac, he’s accepted for his different kind of normal – no questions asked.