The blur that was 2019!!

Happy new year from a different kind of normal!!! 2019 seems to have gone by in a blur for us and our life seems to be lived in a constant whirlwind as we raise our two crazy boys!! Here’s a few highs, lows & memorable moments from the last year:

Our little Zac has kept in the best health he’s ever had over this year – we have now managed our record of a full year with zero hospital admissions!! This is a miracle for us and although there have been a few periods of illness and worry, we have managed Zac’s care at home without the need for additional breathing support. Zac continues to receive his miracle medicine and we are seeing him gain strength as a result of his treatment and his daily physio exercises. He even took part in a few news reports about his medicine!! Zac manages nursery 5 mornings a week and is making great progress. He is included in every aspect of nursery and this year has enjoyed sports day, teddy bears picnic and a trip to the library. We have also welcomed “chas at home” into our house which gives us a little break every few months. Zac always gets up to lots of fun activities with his “chas ladies” and is well looked after while me & Craig can have a meal out or spend time with Caleb. 2019 saw Zac’s “make a wish” granted where he received a spa pool to do hydrotherapy at home. With the support of our amazing family & friends we were able to build a superhero hut to house his pool & build a changing area too. Over this next year we are planning to build a wet room and install a lift in our home so that all Zac’s care needs will be met. 2020 also looks to be the beginning of some discussions around spinal surgery for Zac – unfortunately, as Zac grows his spinal curve seems to be getting larger and altho we do all we can to prevent this it seems that surgery may be inevitable. Early in the new year, Zac will attend some clinics where his medical team will do various tests & assessments and some difficult discussions will be had. Zac faces challenges daily but he continues to do so with an incredible sense of humour, a smile on his face & a brilliant attitude!! Couldn’t be more proud of the little guy he is.

2019 saw us receive an official autism diagnosis for Caleb and again it was a long process with many months of meetings, assessments and appointments. Caleb has coped with many different situations over the year and he continues to amaze us with his academic ability, the quirky way he sees things and his insight into the different way his mind works. I took part in an autism course and it proved very beneficial in helping us understand certain things Caleb goes thru in every day life. We have learned to chose our battles this year and have some strategies that work for Caleb. He is learning to adapt and cope with a lot altho meltdowns are still a common occurrence in our house. For a few months this year, Caleb was part of a sibling support scheme ran by chas. He had a volunteer who would spend some time with him each week doing all the activities that he loved – this was amazing for Caleb and he loved having “his grown up” that was just there for him!! Caleb has celebrated many achievements at school during 2019 and also helped build Zac’s superhero hut. He continues to be his quirky self and is completely bonkers – couldn’t be more proud of the boy he is.

In May of 2019 me & Craig celebrated 11 years of marriage – we continue to work as a team through it all and our two boys have definitely made us stronger. I stay home with the boys while Craig works full time – we are very blessed to be able to work like this. As a family this year we’ve had a summer holiday, movie nights, trips to the park, days out, walks, weekend breaks at Rachel house, we’ve spent time as a family and made memories.

We are so thankful to everyone who supports us and follows our journey. We wish you all lots of happiness for 2020!! Xxx

It still catches you off guard!

We’ve been living our different kind of normal for three years now. In those three years we’ve gone through the motions of hospital stays, hospital appointments, daily breathing treatments, daily physio, tube feeding, lifting, changing. We are used to wheelchairs, profiling beds, changing equipment, medical supplies. Packing bags & trying to prepare for every eventuality has become second nature. We drive an adapted vehicle. Our daily routine is a bit different to the “normal” & while we try to do “normal” things there are some places/activities that just aren’t accessible. This is our life and has been for the last three years. Although I know our life is different, it’s our normal and it’s what we know now.

I rarely think about the “what ifs” or the “what would’ve” but even after living this life for the last three years there are still moments that catch you off guard. It can be a simple comment, a memory on Facebook, a photo, meeting someone, a conversation, a message – anything that reminds you that your life is different. These moments go on round about me every day & they rarely bother me, I focus on my boys and what works for us as a family but occasionally one of these moments will smack me in the face and I’ll be overcome with the pain, sadness, grief I suppose that our life is not the normal. It hurts sometimes. I guess it’s something that will always be there and these moments will probably always creep up when I least expect them.

The important thing for me is to not dwell on these moments, it’s ok to have a cry, it’s ok to feel upset, it’s ok to feel sadness but don’t stay in that place. Once it’s caught you off guard, deal with it, accept it for what it is, focus on the positives & move on. For every moment that catches me off guard I try to think of a positive about my life, I think of the amazing qualities my boys have & I think about the adventure we experience because our lives are not the normal!

Diagnosis #2 – accepting autism.

Wednesday, 11th September 2019. The day we received diagnosis #2. The day I’d been fighting for. The day I’d filled in a multitude of forms for. The day we’d had lots of observational assessments for. The day all the evidence was collected for. The day every other appointment was building up to. The day I knew diagnosis would be given. The day I was prepared for. The day I knew what the professionals would say. The day my heart felt a huge mix of emotions all in one moment. The day they told me my son is on the autistic spectrum.

I knew the diagnosis was coming. I’ve researched autism for a while now and I knew my son displayed many traits & behaviours consistent with autism. I knew that an official diagnosis would not change the amazing person he is but my heart still felt sadness when it was confirmed. Maybe it’s the fact that he’s now been given a label – I mean no-one ever wishes for a label, maybe it’s the fact that it’s now written down in black & white, maybe it’s because it’s another name to remind me that our life is not “normal” and won’t ever be “normal”. Maybe it’s because I have to face all the fears I have about my son not “fitting in”, maybe it’s because the worries about people not accepting him are now very real, maybe it’s because I know he will always face challenges just trying to be himself in this world that doesn’t understand him. But my heart also felt relief. Relieved that we can now access support, relieved that there is a reason my son does the things he does, relieved that I can explain his “quirks”, relieved that I can put things in place to help him cope with the difficulties he faces. Sadness, relief, fear, worry all mixed together in my heart that day.

He knew something was going on that day, he asked why I thought we had the appointment. I couldn’t yet tell him he was autistic, wasn’t even sure how to start explaining it. So I told him he had an incredibly, brilliant mind that works in a different way and that we’d went to see about it. My heart also felt pride that day – proud of how my son notices the tinniest details, proud of his gift with numbers, proud of how he faces the every day and proud of how he tries to handle the challenges.

Autism is different for every family; for us it’s lines of cars, lists of facts, the same tv shows on repeat, meltdowns, very literal, factual conversations, sensory issues, structure & routine. Autism pretty much rules how we do life at our house. Autism diagnosis is not going to change the person my son is and it’s not about him changing – it’s about those around him changing. It’s about trying to understand how his mind works, it’s about trying to see things the way he does, it’s about helping him cope with situations he finds difficult.

My son amazes me. He is often a hurricane of crazy energy. He is funny, loving, intense & totally bonkers. He is different. He has autism. But if you let him be the awesome person he is, he might just change the world one day.

To our chas volunteer!!

The world is filled with lovely people, some of us are lucky enough to see this loveliness in action. Quite a few months ago we were offered the chance to be part of a new program that chas were running – a home support volunteer program. This service matches volunteers to families who are chas service users and helps where people feel they could do with an extra pair of hands; they might come in & help with some house work, maybe they will help catch up with some errands or they can offer support to a sibling. We asked if we could have some sibling support for Caleb; someone who could do some activities with him & keep him busy after school one day a week. Caleb was matched to a volunteer & this lovely person gave up her own Thursday nights to support him over the last few months. Sadly for us, our volunteer was offered a new opportunity which included a move down south so our Thursdays nights won’t be the same. We said goodbye a few weeks ago and this is a thanks to you – our lovely chas volunteer:

Thank you for coming into our home and totally getting us – for accepting the craziness & for just joining in with it!! Thank you for listening to Caleb talk about space, planets, numbers, countries & all the little obsessions he goes through. You didn’t just listen and nod along like so many people often do, you actually joined in with him; you gave him new facts, you fed his imagination, you expanded his knowledge! Thank you for running around the park to play football, for letting him win, for counting steps & for helping him achieve that biggest steps record ever!! For the hours you had to bounce on a trampoline and for the times he shouted because you were late!! Thank you for turning up at our house with craft supplies ready to keep Caleb entertained, for looking up experiments & projects you thought would interest him and for sitting watching repeats of Shaun the sheep whilst eating ice poles. Thank you for giving up your own time, for driving a distance to get to us & for being Caleb’s “grown up” that was just for him!! Lastly thank you for the postcard you sent Caleb – knowing how much he loves routine you said he’s to read it on Thursdays & knowing how difficult it is for him to understand the unseen you asked him to find your location on his globe so that he could see where you are!! It was such a special thing for him & just so you know he says a 7 hour drive is not too far for you to still visit on a Thursday!!

So lovely volunteer, we’re so glad you were a part of our family and wish you lots of happiness in your new adventures!!

If you are someone who has experienced the amazing work a volunteer does then you are like us & very lucky to see that there are lovely people in this world. If you’ve never experienced the work of a volunteer & you have spare time & a big heart then maybe you could be one and be the reason someone believes in the goodness of people!!

7 weeks of summer!

It’s been 7 weeks of summer holidays at a different kind of normal; 7 weeks of different routine, 7 weeks of relaxed structure, 7 weeks of meltdowns, 7 weeks of physical hard work, 7 weeks of mental toughness, 7 weeks of craziness, 7 weeks of “mum, mum, MUM”, 7 weeks of number jacks on repeat, 7 weeks of snacks every 5 minutes, 7 weeks of “he’s annoying me AGAIN”, 7 weeks of demands, 7 weeks of pure madness!!! 7 weeks of summer – some days it’s been a breeze, other days it’s been a full blown hurricane and the only reason we’ve all survived is because it’s been a team effort!!

Two boys, two different sets of needs (sma & autism) and one mama – there’s just no way you can physically do it all, so all summer we’ve operated as a team to make sure there’s been laughs, happiness and to make sure we’ve all made it to bed time alive! We might not have had as many days out as everyone else, we might not have had as many play dates as everyone else, we might not have stayed up as late as everyone else and we probably haven’t cherished every moment like everyone else but as I look back over the summer we’ve done it our way. We’ve went on holiday where we ate ice creams, played at the park, visited new places, went bike rides. We’ve had movie nights, went for long walks, played at the beach, more bike rides, saw a few friends, chilled at home and of course we’ve had some hospital appointments to fit in for both boys.

This has only been possible though because we’ve worked together. I am incredibly grateful for my parents who have been here every day over the holidays; for the ironing that’s been done, the 15 mins of google earth on the I-pad that’s gave us all a chance to breathe, the “I’ll come down so you can go to Tesco”, the trips with me to the park or walks so that I have someone to help with all the lifting, the extra pair of hands & eyes that’s needed when the boys are both in the same room together, the “I’ll get that” or the “I’ve changed my diary to do this”. My lovely husband who goes out to work early every morning just so that he’s back early enough to help get the bath & bedtime routine done, who works really hard so that I can stay home with the boys, who changes work schedules to be at appointments, who misses social events so that he’s home with us, who takes over so I can get a chance to shower or sort washing. For the friends who message to ask how we are – I know I don’t always get round to replying but I am very appreciative of you all thinking of us & know that in my head I am replying to you even if it doesn’t quite make it to the actual message!!

So 7 weeks are nearly up – my lovely boys will be back at school & nursery on Wednesday. The summer holidays have been very challenging and yes, some days, actually a lot of days have ended in tears. But that doesn’t mean I haven’t loved having them at home where I know they are safe, loved, sheltered, free to be their quirky, different selves. I am looking forward to the structure school brings & the 2 hours I have each day boy free but part of me will miss this survival mode of the summer holidays, part of me will look back and will forget about the meltdowns, the tears, the tantrums, the arguments and I’ll remember the moments of calm, the capital cities Caleb has memorised all summer, the excitement when he discovered the tooth fairy had been, the joy of Zac playing football in his power chair, the two of them laughing together and I’ll be so very grateful that my team got us all through to the finish line of the 7 week marathon that was the summer holidays!!

Dear Nursery – part 2

Dear Nursery,


We just wanted to write a part two to the letter we wrote at the beginning of our nursery journey – our first letter was all about how worried we were about this new milestone Zac was going to achieve, we were terrified at the prospect of leaving him, we were scared of the unknown but at the same time we were so very proud that Zac was going to celebrate a milestone we never thought possible. We’ve made it to the summer holidays, Zac has completed his first year of nursery and our hearts are filled with happiness and pride at all he’s achieved in this first year, so dear nursery there’s a few things we’d like to thank you for:

  1. Thank you for being Zac’s arms when he can’t reach his paint brush, thank you for holding his glue stick, thank you for helping him draw, thank you for showing him how to make models, thank you for adapting crafts so he can take part, thank you for letting him explore his creative side. This year he’s loved arts and crafts and he’s become a little artist. We didn’t know if we’d ever see first paintings and now our fridge is full of his masterpieces – we couldn’t love them more.
  2. Thank you for adapting nursery so that Zac can join in with everything – this year Zac has taken part in obstacle courses, sports day, gym, fairy tale day and this just makes us so happy. I know it is hard work for you all, I know you have to do all the running around, I know you have to do extra preparations, I know sometimes you’d rather have an easy day but seeing my boy with his sports day medal and hearing him tell the rest of the family that he was “racing” with everyone else means the world to us!
  3. Thank you for reassuring me – thanks for all the wee updates, the posts in his learning journal, the wee chats at the end of the session just so I know he’s been okay! Thanks for all the research you have done so that you understand his condition, thanks for supporting all we do to raise awareness of SMA and thanks for being an advocate to make sure he has all he needs.
  4. Thank you for accepting Zac for who he is, thank you for helping him make wee friends, thank you for including him in all the group times, thank you for showing the other kids that Zac likes to have fun like everyone else. Thank you for letting him talk and make up his wee stories, thank you for seeing him as the fun, cheeky, nonsense loving boy that he is.

So nursery, what a first year Zac has had – we made it through with no major hospital stays, we made it through with minimal drama, we made it through this new journey as a team. You have been a fab team to work with; you have all taken care of our boy and made his first year at nursery the most fun it can be. You have accepted him, included him, looked after him and loved him and for that we can’t thank you enough! Here’s to a lovely summer break for all of you – lots of relaxing and spending time with your own families. We look forward to year 2 of nursery and the new milestones Zac will achieve!!

Love Zac’s very grateful mummy x

zac nursery

Can you take me to walking lessons?

Kids – they ask questions all day long: Mummy what’s for snack? Mummy what does space look like? Mummy what noise does a parrot make? Mummy how many people are in the world? Their little minds are full of questions; they soak up information then spit out more questions. Some of their questions are funny, some serious, some you can’t answer, some you don’t want to answer and then there are questions you wish they didn’t even have to ask.

It was a Saturday morning when the question came. We were watching cartoons just chilling out. These questions always seem to catch you off guard, you’re never ready with an answer that will fix it all, you don’t get a manual at diagnosis day on how to answer these questions but still these questions will be asked. The question comes like a like a bullet:

“Mummy can you take me to walking lessons”?

The lump is in your throat instantly, tears have rushed up to your eyes with the impact of this question being asked, you’re trying to stop the tears spilling out and when you don’t answer immediately he adds “It’s just that I can’t walk like everyone else so maybe if I got walking lessons I would learn to do it”.

You look at your little three year old sitting in his chair escaping his normal by watching cartoons and you feel so much heartbreak and guilt. You passed a faulty gene to him and he has spinal muscular atrophy. It’s your fault he has to ask this question in the first place and now you have no idea how to answer. You know it is very unlikely that you will ever see him take first steps but there is a part of your heart that will never give up on the impossible. It’s something that is always pushed to the back of your mind – you see others his age splashing in puddles, chasing each other, running in the park and you feel a tinge of pain and sadness that your child isn’t truly the same.

You answer as best you can – you tell him that he has a cool power chair that can take him where he wants to go, you tell him that walking legs aren’t the most important thing about a person, you tell him that he can still do everything his friends do just in a different way. You try to reassure him. You try every day to give him the confidence to believe in himself for who he is and you try to make him feel secure in who he is.

You don’t know if that’s what he wanted to hear, you don’t know if you’ve made him feel better, you don’t know if he’s understood yet that he’s different. You go back to watching cartoons with another little piece of your heart in pieces and you think to yourself if only it was as simple as taking walking lessons.