The anonymous card

Picture the scene: it’s early Saturday morning, you’ve been up several times in the night to reposition your son and you’re pretty tired. You’re desperate for a long lie and all you want to do is snuggle in bed. You’re back and neck are sore from the constant lifting you do and then you hear the little voice calling “mummy I want out of bed”. You sigh – it’s too early and you feel like you never even met sleep last night. You shout back “I’ll be there in a minute” and you try to muster the energy to get out of bed. The voice calls again “mummy hurry up I want out of bed” and you snap…… “I’LL BE THERE IN A MINUTE”. You are exhausted and the demands just keep coming. You immediately feel guilty for snapping – it’s not his fault he can’t get out of bed himself and you imagine how scary it must feel to be trapped in bed so you rush through to start the morning routine.

You do the chest physio, medication and set up feeds. By this time your other son is up and he’s carrying out his own morning routine – he lines up his toy cars on the kitchen worktop and you’re trying to make breakfast in between these strategically placed vehicles knowing that if any of them get knocked out of place your whole Saturday will be a catastrophe! It’s one of those Saturday mornings where your mind starts to wander; what would we be doing if we weren’t living this “different kind of normal”, what would our Saturday look like if we didn’t have these routines to stick to, it’s one of those Saturday mornings where you want to run away and have a “normal” life.

Then the post arrives and there’s a card addressed to “mr & mrs Cameron” – it’s unusual – most of our post is addressed to “parents & carers of …” . You open the envelope & see a little card with the words “thankyou”. There is a little verse inside saying your journey has been an encouragement to them & you’ve helped them. The card isn’t signed.

Your Saturday morning mood changes; you don’t want to run away anymore and have a “normal” life, your “different kind of normal” has made a difference to someone else and that makes it all worthwhile. So to whoever sent us that anonymous little card: Thank you, I needed that today to remind me that my “different kind of normal” is my reason for being on this planet!

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Two boys, a scooter and a wizzy.

Having two boys with very different needs can make playing together a tricky task; Zac’s sma means he needs help to physically move around and Caleb finds social interaction challenging. However, I watched my two boys play together yesterday – both of them playing around each other’s different needs thanks to a scooter and a wizzybug.

“Wizzybug” is Zac’s little electric wheelchair which is provided by a charity called Designability. This amazing charity run a loan scheme where wizzy is loaned free of charge until a child reaches the age where a bigger power chair is needed. Zac was lucky enough to receive a wizzybug last year and he has gradually built up the strength and skill to drive himself. Wizzy has given Zac a little bit of independence and the ability to make choices for himself but I think most importantly wizzy has given Zac the chance to play.

Yesterday we went to the park and we took wizzy with us. Caleb raced around on his scooter and waited for Zac & wizzy to catch up, they “ran” together to the play park and thanks to wizzy Zac was able to access some of the activities by himself. I think for the first time ever I heard Zac say “mum I’m going over here” and off he whizzed to a game. I was waving as he drove away – it was such a novelty to be able to see him make his own choice about where he wanted to go! I then watched my boys chase each other on the grass – a wizzy chasing a scooter – they were laughing and were full of nonsense. Zac was able to drive through the crunchy autumn leaves as Caleb led them to a hideout in the woods and my two boys were pretending to be gruffalo’s in the forest! Wizzy has also given Zac the chance to get up to mischief and like any “normal” 3 year old, he decided to “run” away. He had freedom to be naughty. The lovely thing about this is that it also gives Caleb the chance to be big brother. Caleb was scooting along the path, giggling at Zac “running” away as he tried to persuade him to drive back round; a big brother trying to get his wee brother out of trouble!!

As I watched my two boys playing and having fun I realised that it really doesn’t matter what our differences are – fun is something that’s in your heart and with the help of a scooter and a wizzy I just saw two brothers having fun in their own world & they were completely unaware they were any “different kind of normal”.

S.M.A – when the fact sheet becomes reality

Spinal muscular atrophy – three words that changed our lives forever. Three words that still feel like a massive, medical mouthful to say. Three words that seem far too serious and heavy to be associated with the fun-loving, light hearted little boy I know. Three words that still cause blank expressions, glazed eyes then shock and sadness when you explain the conundrum of what these three words actually mean.

Today is sma awareness day and it’s very easy to read a few fact sheets, check out some statistics and share a few neat graphics but what happens when you are the statistic, what happens when you’re living the fact sheet and what happens when the neat graphics depict your life? Well here’s my take on our family living the fact sheet for real:

The fact sheet:

  • Sma is a rare neuromuscular condition that causes progressive loss of movement & muscle weakness.
  • 1 in 40 of us carry the gene that causes sma.
  • There are three main types of sma – type 1 is most severe and children of this type will rarely see a second birthday.
  • Sma is a life limiting condition.
    There is currently no cure but there is now a treatment aimed at halting progression.

Living the fact sheet:

Sma causes progressive loss of movement – the reality of this statement is both terrifying and heart breaking to watch. When our little Zac was around 7 months old we noticed he stopped rolling onto his side to sleep, then he stopped rolling over all together. He never reached the milestone of sitting up and we watched him struggle for months with trying to keep himself up in his hi-chair and buggy before we finally managed to get a diagnosis. We saw his little legs lose all movement and we watched as he lost strength in his arms. It’s heartbreaking to say some of his first sentences were “I’m stuck”, “help me”. Worst of all we witnessed rapid deterioration of his respiratory muscles and we’ve helplessly sat by a hospital bed too many times while he’s battled with every fibre in his being to keep these muscles working. That was the reality for us but thankfully a new part was added to the fact sheet and a new treatment was discovered. We received a miracle and Zac started treatment – thankfully since then we’ve seen amazing progress and we’ve celebrated Zac getting stronger but it didn’t happen over night or by magic. We had to learn to be physio, nurse, carer as well as parents. We carry out daily stretches, exercises, breathing exercises, water exercises, positional changes – all designed to keep Zac’s muscles working and be as strong as they can. Then to best support all this work a multitude of equipment takes over your house; comfy chair, wheelchair, stander frame, bath seat, toilet chair, wizzybug, comfy mats & support cushions, breathing machines, feeding pumps & tubes. A cupboard needs set aside just for medicines & special feeds and pretty much the layout of your house needs designed around all of this stuff!! Daily life revolves around treatments, hospital appointments, home appointments, medicines and feeds as you fight daily to slow down this progressive loss of movement.

Next you deal with the fact that you are the statistic on the fact sheet – we are the 1 in 40 who are carriers of the gene that causes sma. This comes with its own journey of emotions (see my previous blog “learning to love your genes”). When you become the statistic and you become “sma parents” you devote your life to caring for your child. You stay up late researching medical terms, medical advances and all that surrounds life with sma. Your priorities in life change and you now focus on making it through the every day. Your financial situation changes, work situations change, your friendship circle becomes smaller and your life is somewhat ruled by this condition. But being this statistic has made us stronger – we’re a team; we’re both exhausted, both give everything we’ve got, we face the challenges together and celebrate the miracles together. Sma makes very different demands from both of us but each ones demands are equally essential to making our “different kind of normal” work.

Our whole life was thrown into a whirlwind that day we heard those three words – spinal muscular atrophy. We’ve become the fact sheet but the fact sheet can only give you words, the fact sheet cannot possibly convey the incredible human spirit that the faces behind the facts have. The fact sheet tells you that physical strength will deteriorate but sma warriors have the most super human strength of character, their determination is inspiring and they are far more than their condition.

So next time you see a fact sheet with those statistics & neat little graphics, remember there are real people living it and a whole lot more goes into daily life than just the sentences on the paper. We are a family where the fact sheet has become reality and now we’re living our “different kind of normal” to the best we can.

A crazy week with the Cams

Life with my two crazy boys is always full on & this week was no exception! Nothing out of the ordinary – just the usual appointments, phone calls, school runs & every day care that has become our “normal” but for some reason this week has felt crazier than ever so here’s the highs & lows of a week with two “different kind of normal” boys:

Monday: The week started slowly like most weeks – Monday morning is usually our time to catch up with everything after the chaos of the weekend. Zac has some weekly care that needs done for his tummy button so we make that a Monday morning job & we catch up with housework, look through the calendar & diaries and make sure we’re set up for the week ahead. Monday was fairly uneventful – just the usual daily physio, medicines, feeds and everyday routine that needs done.

Tuesday: School mornings are always a rush – Zac’s chest physio, meds, feeds then Caleb’s breakfast, uniform and we absolutely MUST leave the house at 8:40am. Leaving at the “wrong” time results in Caleb’s whole day being “wrong” so now at 8:39am we drop everything, there is no talking and we watch the clock until it turns 8:40am and we leave for school. School run done and time to prepare for hospital appointment. We head to Glasgow for Zac’s respiratory review and all goes well. We make it home for tea time and I’m just in the door when I have a phone call from psychology to discuss strategies surrounding food & sensory issues. There is a big pile of ironing sitting in a basket but I decide once the boys are in bed that “bake off” is a more worthy Tuesday night task.

Wednesday: This is the day I go to “real work” although I feel I’ve already done a full shift at home by the time I even get to “real work”. These days out of the house are supposed to keep me in the real world, keep me sane and give me another purpose – the reality is the only thing I can focus on on Wednesdays is making it through my “real day”, trying to do an okay job & I usually just feel exhausted after being on my feet all day. I get home, quickly have dinner then it’s time to start the bedtime routine for the boys.

Thursday: I have a meeting with complex care & social work and despite me feeling very anxious about home care 6 months ago, I now find myself requesting additional hours of care & some weekend time. Part of me still feels guilty about this but the other part of me needs the time out – I guess this is a dilemma I will always face. Meeting over, schools out & my grandparents come to visit. Then the “hurricane” hits and I’m right in the middle of an aspergers melt down. It could be something different has happened in school, the excitement of family visiting, the snack wasn’t right, the noise level…….. there are endless possibilities but we’ve gone too far to try and reason it out and my job now is to try and calm the storm. We’re past the point of our normal cool down technique so now I just have to let him safely scream, punch & run it out. The window cleaner turns up at this point & I’m very aware I must look like an awful mum – one of my boys is in his pants screaming the place down while the other is wizzing around in his wheelchair & I’m standing somewhere in between the two waiting for this melt down to calm. The normality of the tea time routine finally brings the melt down to an end but by this time we’re running behind & the hubster returns from work to me saying “please let’s just get to 7pm with no hassle”. A glass of wine was poured at 8pm!

Friday: It’s a new day and all is okay with the world again. We have a morning physio session with Zac where we decide with the physio’s advice to scrap Zac’s stander and we have some new things to add to our daily routine instead. Zac is pretty tired after all the work out so he has a chilled afternoon with a few movies, I finally do the pile of ironing that has multiplied since Tuesday and me & Craig get an hour to ourselves when Zac’s home care arrives. My amazing parents then take Caleb for a sleepover so it’s a quiet night with the tv.

Saturday: With our big boy having the day with nana & popo we decide it will be easy to face the Saturday shops with just the wee one. Big mistake – it turns out none of my boys are great with shops and after setting up wheelchair & feeds we don’t get very far before there’s tantrums from Zac!! After a few hours of trying to pacify our three year old we leave the shops having only purchased a bat man toy car and a pumpkin spiced Frappuccino. Zac falls asleep on the drive home and me & Craig sit in the drive way for 10 mins – one boy with the grandparents & one asleep – winning at parenting!!

Sunday: Well we’ve made it to the end of the week and yep it’s been a crazy, exhausting week – all of this craziness goes on as well as all the normal stuff – washing, ironing, cooking, working, homework, house work, shopping…….. but this is our life & it wouldn’t be ours if it wasn’t crazy! Our life is filled with challenges & crazy happenings so I’m ready to face the next week & let’s see what our “different kind of normal” brings!!

Zaccy vs sleep studies: lessons learned from a 3 day sleepover.

Last week me & Zaccy spent 3 nights in hospital for sleep studies. Sleep studies are a part of Zac’s life with sma – as his muscles are weaker they can become more relaxed than normal during sleep so it’s important he gets his oxygen & carbon dioxide levels checked every so often to make sure he’s breathing efficiently during sleep. This time we were going to get a review of his night time breathing and we were aiming to set up ventilation called “bi-pap” – without being too technical this is a machine with a mask over the nose that delivers big breaths as you sleep keeping the airways open. The thinking behind it is that Zac’s chest shape would improve using it as he would be breathing more efficiently and should help him have more of a rest at night as the machine would help do the hard work! That was the plan, however, Zac never likes to follow a plan; after three nights of broken sleep we were discharged minus the bi-pap machine. So here’s the lessons I’ve learned from our little sleep study:

1) No-body sleeps much during a sleep study!! Your baby is hooked up to a few monitors, little stickers are dotted around their wee body and laser sensors are attached to ears, fingers & toes. It’s not much fun trying to sleep with all that gear and every time your child wants a change of position these clips & sensors need moved too. Then the monitors alarm and sing at you every wee while and the nurses pop in & out too so yeah not much sleep actually happens.

2) My child is mr chatterbox. On the third night we had the task of distracting Zac while we attempted to wear the mask for longer than 5 minutes. I found out that night that it’s possible to have a conversation about a few small stickers for a very long time – 2.5 hours to be exact! He definitely won the prize for “Chattiest in the ward” and won quite a few fans before finally giving in to sleep!!

3) Chocolate bars do not make a good breakfast. I found out that after around 4 hours of sleep a night it’s not a good idea to eat a caramel bar for breakfast – they do not give you the energy boost you desperately need and you feel like you could eat everything in sight for the rest of the day.

4) My little Caleb is amazing. Normally hospital stays are very difficult for Caleb – there’s too much change in routine and all the worry can be too much for him. Last week was different – my little Caleb took everything in his stride and was an absolute star! He coped with every arrangement and made me a super proud mama!! Although I was in hospital staying with Zac I learned a very important lesson about Caleb – he is learning to deal with his different kind of normal in his own way and I admire him so much for being the star he is!

5) I have a very lovely husband. As well as working his day job, taking meals out the freezer, recording my programs and bringing me chocolate, Craig also drove back and forth to Glasgow four times a day just so me & Zaccy didn’t have to stay in hospital all day. He very patiently listened to me as I went over every detail of the arrangements for each day & he stayed up to text me late at night when I clearly wasn’t getting any sleep at the hospital. I learned I really do have a top husband!

So after our 3 nights stay the doctor came to see us to let us know that Zac wouldn’t be taking the bi-pap machine home as they needed to look further into some of his results & machine settings. I looked & felt like a zombie & felt a bit like we had wasted 3 nights. That was a week ago & after catching up on some sleep I realised that the week hadn’t been wasted – I took more than just bags under my eyes home – I took home the fact that my little Zac had faced a challenge & coped yet again and that Caleb is adapting to cope so well and is a star! My boys made me so proud last week to be living our different kind of normal.

Chocolate cake & a ham sandwich….. for breakfast.

What kind of mum gives their three year old chocolate cake for breakfast??

Well when Zac was diagnosed with sma his weight had plummeted – he was 17 months old but was closer to the weight of a 6 month old baby. The months leading up to diagnosis were difficult – he had gradually stopped eating meals & had started to choke on crunchy textures. My days were consumed with trying to get him to eat snacks and I was constantly battling with him over spoonfuls of porridge, tuna pie & yogurts. Sitting up in his hi-chair was becoming more challenging and he was permanently too tired to finish any food put in front of him. A few weeks before diagnosis Zac was admitted to hospital with a chest infection where his weight fell dangerously low.

Diagnosis day came and we finally understood why Zac was struggling to eat; he was too tired to chew & swallow, his swallow was becoming weaker, his digestive system was slower and he wasn’t going to gain weight like a “normal” person as his body metabolises things in a totally different way. By this point Zac was eating snacks such as quavers, cheese cubes & yogurts but it wasn’t going to be enough to sustain him so we had some big decisions to make.

The quickest “fix” was to use a NG tube – a tube that goes down to the tummy through the nose and we would use high calorie formula to feed Zac several times a day. However, this did not agree with Zac – he was sicky with every feed, he had a big brother who was constantly worried by this tube and Zac had completely stopped eating anything as he was gagging with the tube all the time. It was honestly one of the most stressful periods for us. As parents we wanted Zac to enjoy eating whatever he wanted, when he wanted without all the pressure of calorie counting. We finally found a surgeon who agreed to take Zac into theatre to perform a gastrostomy – Zac would have a discreet “button” put in his tummy and we would connect this to a tube to feed him the bulk of his calories and he would be free to enjoy eating again. We had a 4 month wait for the op and during this time I had to syringe high calorie drinks into Zac’s mouth to try get him as strong as possible for the operation. It was a draining and mentally exhausting time.

Operation tummy button was complete just over a year ago and it has been one of the best things we’ve done for Zac. The pressure was lifted immediately and our lives became much more free. Zac can be fed wherever, whenever without him having to physically work hard to eat and without us having to count calories! However the downside has been that he has a full tummy most of the time and rarely feels hungry. He won’t eat a normal meal at all now and if I ask if he wants lunch the reply is usually “just use my button”. Maybe every few days he’ll feel peckish and eat dairylea dunkers or a few chips, few bites of fish finger or a pack of quavers. I’m totally fine with that – of course I would like him to eat normally but in the grand scheme of things I’m happy for him to snack when he wants knowing that all of his nutrition is taken care of. Zac is fed all through the night (this way he isn’t using any energy at all & the calories can go to bulk up weight) so he isn’t hungry at all in the mornings. I ask everyday if he wants a breakfast and the answer is ALWAYS “no”. Well that was until one day last week when he answers “yeah I want chocolate cake & a ham sandwich”. I was completely shocked and over the moon that he wanted to eat so what did I do??? Yep I cut up that chocolate cake into little easy to eat squares, made a ham sandwich & sat happily watching my little boy eat a breakfast!!

What kind of mum gives their three year old chocolate cake for breakfast?? The “different kind of normal” mum!!

*thanks to my mum who gave me the idea to write a blog about that breakfast xx *

Learning to love your genes.

“Oh he has his daddy’s eyes”, “he smiles just like his mummy”, “he’s going to be tall like the boys in the family”, “he’s his mummy’s double” – all little quips we love to hear when family and friends visit new babies. Being like someone and inheriting family traits gives us a sense of belonging, connects us to our roots and secures our place in the family. We feel a sense of pride at having passed on our genes- proud of the beautiful babies we’ve made, proud to say they’re like us: “we made that”.

Well when Zac was 17 months old we sat in a doctors office and heard these words “your son has sma, a neuromuscular muscle wasting condition and he has it because you have both passed on a faulty gene”.

You look silently at the man you fell in love with, you look at your perfect baby lying on the assessment mats, your baby that can no longer roll over, your baby that can’t sit up, your baby that can’t crawl, your baby who you’ve just watched battle a chest infection where he fought for his life and you’re finding out he’s going through all of this because of……… you.

The news is devastating, your whole body goes numb and the pain of guilt overwhelms your heart. But this is something you cannot change, you can’t go back and pick out the faulty gene, you wouldn’t want to fall in love with anyone else, it just so happens you fell in love with another 1 in 40 person who carries this gene so you just have to accept it no matter how painful it is.

The first few months are a whirlwind of setting up care but after that you have to face up to the genetics. You both go through feelings of guilt, pain, grieving, the “what ifs”, you cry, you rant, you talk – it helps that you both caused this – there is no more blame on the other. You get up every morning and face it together. After a while you accept and come to terms with carrying this faulty gene but next you have to tell the rest of the family. It hurts to have to tell your parents one of them has passed this to you and it worries you to think that your brothers/sisters could also be carriers. You tell everyone not to feel guilty, it doesn’t matter where this gene has come from because it’s here and nothing can change that but it still crushes you to see the devastation when your dad finds out he’s passed it on and it breaks your heart to think the results could have an effect on your brothers/sisters futures.

So what do you do when you find out you carry this faulty gene? Well we might be crazy but after the guilt and pain we decided to embrace it, it was the only way to get through the everyday. We booked ourselves into the tattoo studio and inked our broken DNA. I know it’s not for everyone but it was part of our healing process and part of us accepting that we carry this. My tattoo has a beautiful flower coming from it to symbolise that something so broken can produce something so beautiful, Craig & my dad have broken DNA showing that something broken can still be strong. This gene is in our family, we can’t change that but we’re slowly learning to accept it and live our “different kind of normal”.

*Huge thanks to evolved tattoo studio & to Nick for listening to our story, getting us & designing something unique*