“Happy Fathers Day”

Happy Father’s Day to the dads who drive from hospital to hospital, to the dads who research various medical terms, to the dads who do therapies every day.

To the dads who print social stories and timetables, to the dads who battle with the education system to ensure their child’s needs are met, to the dads who advocate for their child and to the dads who carry out medical care for their child.

To the dads who have slept in a hospital chair or spent sleepless nights watching over their child. To the dads who do tube feeding, to the dads who administer medication and to the dads who have trained in the medical procedures that their child requires.

Happy Father’s Day to the dads who have given up careers to be home with their child, to the dads who have sacrificed their own dreams to create dreams for their children.

To the dads who miss nights with friends or the sports match to be with their child. To the dads whose life has not quite turned out as planned, to the dads who always put their child’s needs before their own. To the dads who work every hour they can to provide for their families and to the dads who work several jobs to make sure their family have all they need.

Happy Father’s Day to the dads who read bedtime stories, to the dads who fix bikes & wheels, to the dads who adapt toys & games to fit their child’s needs. To the dads who make their child laugh, to the dads who comfort and dry up sad tears. To the dads who calm meltdowns and reassure worries. To the dads who take stresses away and to the dads who cheer their child on every step of the way.

Happy Father’s Day to the dads who have lost, to the dads who have felt pain, to the dads who never got to be. To the dads who won’t hear the words “daddy” and to the dads who have experienced heartache.

Happy Father’s Day to dads everywhere; to father figures and to anyone who fulfils the “daddy role”. Know today you are important; you are appreciated, and you are very much loved.

“He ain’t heavy, he’s my brother”

Two boys. Two different personalities. Two different sets of needs. Two different ways of thinking.

They face very different challenges. But they are brothers and for the most part they are best buddies. My boys have spent so much time together over the last while as we’ve been shielding and our country has been in a state of lockdown.

I was apprehensive about this at the beginning; it can be a difficult balancing act to juggle both their needs. However, I was determined to make the most of our time at home and to make precious memories for them. I have to say I have loved seeing their relationship grow during this time.

Together they have built story dens, had discos in the living room, watched movies, played on the PlayStation. They have baked, raced on their wheels, chilled in the garden. They have made up games, helped each other with schoolwork, had fancy dress days. They have laughed a lot and had lots of silly nonsense. They have accepted each others needs and embraced each other’s quirks.

They seem to have gained more understanding of each other and have enjoyed this time together.

Of course, like all brothers, they’ve had their moments. They’ve argued over who gets to choose the game or who said the answer first. They’ve fought over what movie to watch and they’ve screamed at each other to be quiet! They certainly know how to push each other’s buttons and they’ve definitely, at times, needed time out from each other to just chill on their own.

But when one is sick, the other is worried. When one has been sad, the other tries to cheer them up. When one is having a melt down, the other tries to calm them down. When one is upset about something, the other tries to get them smiling again. When one needs their daily physio, the other wants to help. When one is having a hard time understanding change of routine, the other tries to reassure.

By bedtime each night they are always best buddies again and they say prayers for each other before going to sleep. My hope is that this time spent together has bonded them and whatever life throws at them they have this special relationship because “he ain’t heavy, he’s my brother”.

Doorstep Kindness

The last few months have been tough for us all; no family to visit, no carers in to give a bit of respite, no therapists to carry out therapy, no places to even go to escape the house.

The days have been long and exhausting, juggling schoolwork, housework, the care needs of two boys and trying to keep everyone happy along the way! By bedtime, each day it feels like I have climbed a mountain of jobs.

In these last few crazy months though, there has been a new kind of kindness that’s kept me smiling on even the hardest days – “the doorstep kindness”.

I’ve heard the ding-dong of my doorbell several times in the last while, went to answer and found various little packages to make me thankful. On the doorstep I’ve found bags of home-made muffins, boxes of cakes & treats. There’s been knocks and bunches of flowers left, there’s been someone standing at the edge of the garden saying, “you’re doing great with the boys, keep going,” there’s been sweets left to cheer the boys up. I’ve opened the door to run to the bins and found fudge, books, more cakes and little letters for the boys. We’ve had awards sent to the door from school, toys delivered for the boys and the postman even delivered a little teddy for us.

These have been small acts of kindness from lots of different people, but they have had a big impact on our days.

They have shown us that even in these worrying times someone is thinking of us. They have constantly reminded me that I have a team of people looking out for us, even when they must do it from a distance. They have been a reminder that we are not going through all of this alone.

So, when life does eventually return to some kind of normal, I hope we will remember the “doorstep kindness.”

I hope we have learned lessons from this, I hope we continue to support each other, I hope we continue to show others we care because just a small gesture of kindness really can change the course of someone’s day.

2019 – Five things I’m thankful for

We are about to wave goodbye to 2019 and say hello to 2020.

New Year time is often a time to reflect upon the happenings, drama, dilemmas we’ve gone through in the previous year.

It’s also a time to celebrate the achievements and milestones that have been reached. 2019 has been a crazy, busy year for our family and seems to have gone by in a blur but as I look back here’s five things I’m thankful to 2019 for:

1) Good health – 2019 has seen our littlest guy keep in the best health he’s ever had.

We’ve avoided hospital admissions and we’ve seen him get stronger and stronger.

We’ve been able to manage the unwell days at home and this has meant less time for our family to be divided by hospitals! I’m thankful that the rest of the family has kept well also which has meant less risk of our little guy being ill.

2) Spending time as a family – over the course of 2019 we’ve been able to spend many days out as a family.

We enjoyed a summer holiday, we’ve had trips to the cinema, we’ve had movie nights, played at the park, went on adventures.

We’ve celebrated birthdays, school achievements and family occasions. We’ve eaten numerous ice creams and just hung out together.

We’ve grown closer as we learn to accept and adapt to both our boy’s needs.

3) Our support network – I’m so thankful for the family and friends that continually support us on a daily basis.

For those that offer practical help like doing baskets of ironing, sitting with the boys, getting housework done, accompanying us to appointments.

And for those who send messages of support or ask how we are. To those who invite us out so we can have a break and for those who help care for our boys so we can have a break.

We are blessed to have such supportive people in our lives.

4) That we’ve grown stronger – I’m thankful that over the year we’ve not only stayed strong but got stronger. We’ve worked through challenges and remained positive in all we do.

We’ve worked as a team and have stuck together through it all.

5) We had a wish granted – 2019 saw our littlest guy have a wish granted from a wish making charity.

He wished for a home spa pool so he could swim and do hydrotherapy at home.

His wish was granted and with the help of some fantastic family and friends we were able to build him a super hero therapy hut to house the pool!!

So as we leave behind 2019, I’m going into 2020 with a thankful heart. My goal for the year ahead will remain the same as it always is: to take one day at a time and to say “it is well with my soul”.

Merry Christmas fellow additional needs families

To my fellow additional needs families,

We go through the everyday supporting each other; laughing together, crying together, ranting together, offering advice and sometimes just being a listening ear.

Our days are filled with lifting, changing, feeding, physiotherapy, breathing treatments, medicines, therapists, hospitals, appointments.

We spend our days researching, advocating, driving to appointments, attending meetings. We spend our days caring and doing everything we can to ensure our families are happy.

Some days we get tired, some days our backs are breaking. Some days things don’t go to plan and some days we don’t accomplish much.

Some days we cry and some days we wish it was different. Some days we have fallouts and some days we feel lonely. Some days are filled with worry and stress. Some days are tough physically and mentally.

On those days my fellow families, we pick each other up, we send a message of support, we phone with advice, we make each other smile.

We let each other know that we’ve all been there and were all in it together.

Some days we see miracles, milestones never thought possible. Some days we laugh and accomplish much. Some days we celebrate achievements – small ones and big ones.

Some days we feel loved and surrounded by family and friends. Some days feel easy and we make it to bed time with zero drama. Some days we do fun things and we get a break from hospitals and appointments.

On those days my fellow families, we celebrate together, we smile and are happy for each other, we message with support. We’re all in it together.

So this Christmas I want to thank you all for your support this year; for the laughs, the tears, the tantrums, the advice and the love.

You are all incredible families – strong, brave, accepting, loving, kind.

I feel privileged to have met such a lovely families and love doing life with you all. I want to wish you all a merry Christmas and for the New Year I wish you all hope, strength, love and a year ahead full of making memories.

Here’s to continually smashing life together.

Love me x

Christmas at our house

Christmas is one of my favourite times of year. I love the build-up; the decorating of the tree, the Christmas carols, the hot chocolate and the family all coming together.

But since our youngest son was diagnosed with SMA, Christmas time always has me feeling a bit nervous – there are lots of coughs and colds, lots of winter germs and more risk of catching these things with all the social gatherings.

There’s always the possibility that Christmas could be spent in hospital.

We’ve spent the last few years in a Christmas bubble at our house to try to avoid all the winter bugs.

We still take part in all things festive, our faith is a big part of our lives so celebrating Christmas is a special time for our family.

I don’t feel we miss out on any of the festivities – we simply do everything at home wrapped up in a big Christmas bow!!

If your family is like ours then here are a few ideas of what we do at Christmas in our house.

We bake Christmas cookies and decorate them with lots of sweets and coloured icing.

We watch Christmas movies with candy cane hot chocolate.

We have pyjama days at the weekends and the boys write their Christmas lists.

We put the Christmas trees up and the boys help us decorate the house.

We have lots of fun with elf on the shelf and open our advent calendars every morning.

We invite family to our house for Christmas goodies and drinks instead of us having to go out in the cold.

 We put Christmas music on and dance in the kitchen.

We read Christmas bed time stories.

We go for a drive into town to see all the twinkly Christmas lights.

We spend the majority of December at home – some would say it’s a bit extreme but we try our best to make sure everyone is as well as possible because all I really want for Christmas is for us all to be at home having Christmas together at our house.

A kind heart

What is the most important thing about a person?

I recently discussed this with my son; he is four and has Spinal Muscular Atrophy.

This condition affects his muscles and he pretty much needs full assistance to do anything physical.

He cannot walk and uses a wheelchair to get around. Most days he accepts this as his normal and doesn’t complain.

However, a few weeks ago we had a wee wobbly day.

When I collected him from nursery he was quite tearful and wasn’t himself. He was very quiet on the way home and when we got back he wanted to go straight to bed to lie down.

He then told me that he was worried about something and asked if he should be worried about it or not.

Eventually he told me it was his legs “should I be worried about my legs”? He told me he’d just seen everyone else running around the nursery and he wasn’t able to do that so it was making him sad and worried.

What followed was a discussion about how he was feeling and he amazed me with his faith and strength of character.

I asked him what he thought made a person special, what did he think was the most important thing about a person.

He replied that a person’s heart was the most important. He said that he had a kind heart and that had to be more important than having walking legs.

His four year old mind was much wiser than its years as he told me it’s his kind heart that makes him love people and helps him make people laugh.

We talked about how some days it might be frustrating for him that he can’t walk but actually with his kind heart he can achieve anything that anyone else can.

I asked him what he would tell people about living with Spinal Muscular Atrophy and his reply made my eyes fill with tears – he told me he would want people to know “miracles happen every day”.

I hope he always remembers our little chat, on the days where he maybe feels a bit sad or frustrated.

I hope he knows how special his kind heart is, how far it will take him and how much people love him for it.

Living in the eye of the storm

It’s been three years since our lives changed forever. It’s been three years since we first sat in a hospital room filled with medical professionals. It’s been three years since we received that life limiting diagnosis for our youngest son. It’s been three years since the whirlwind began and we started living in the eye of the storm.

I often describe our daily life as being like a hurricane or a whirlwind; I mean our days are filled with hospital appointments, physiotherapy, feeding tubes, breathing treatments, medicines, phone calls, lifting, changing and that’s just for our youngest son.

Throw in a diagnosis of autism for our oldest son and there’s more appointments, more phone calls, meltdowns, visual time tables, social stories, cool down time, set routines. This whirlwind whirls round and round constantly. It’s never ending and there’s never any real let up.

I live in this whirlwind daily and always in fear that at any moment the storm will spiral out of control.

In the early days, as the whirlwind was just getting started, I remember one of our medical team saying “this will all settle soon”. The truth is nothing has settled, in fact the whirlwind has gathered more speed, picked up more force. What has changed though is my ability to live with the storm.

I’ve learned to stay right in the middle – in the eye of the storm.

The eye of the storm is where the calmest weather is, the lowest pressure occurs here and clear skies can be seen. It’s a safe place and it’s the place where life can be enjoyed.

For me this means taking one day at a time, cancelling non-essential appointments if there’s too many in the one week, only taking phone calls at certain times, focussing on my boys and family life. I try not to look too far ahead and try to just live for the moment. The whirlwind can go on round about us, I know it’s there and I know if I come out of the eye, the calm place, it will do damage.

Life is far happier if we stay in the eye of the storm, where we can be in control, where we can laugh, where we can see the storm but don’t let it affect our ability to live our lives.

Being a special needs parent – I love it because:

Special needs parenting is demanding, exhausting, chaotic at times but it’s also rewarding, life changing and I love it because:

It’s all an adventure: every day is different; it’s all about what you make it.

Not every day is necessarily an exciting adventure but I find at the end of every day there is something positive to take away and if I think about our lives over the last few years it’s definitely been an adventure full of challenges, new experiences and it’s changed our whole outlook on life for the better.

It’s made my faith stronger: I believe in miracles, I believe in proving medical professionals wrong, I believe in achieving milestones that were never thought possible.

I believe that my boys are here for a reason and I believe that I’ve found my purpose in life.

We get to see real kindness in action: we’ve had volunteers come to help with our boys, we’ve had people support our charity fundraisers, we’ve had people ask after our boys and we’ve had people give up their own time so we can have time out.

In the whirlwind that we sometimes live in as special needs parents we get to meet people we might never have come into contact with, the world is full of the loveliest people and we get to see that on a daily basis.

We celebrate the small stuff: every tiny milestone for us is a big deal so in our house we celebrate.

We appreciate the small things that maybe others take for granted and I love that we get to be free of the comparison stuff; our boys are different, they aren’t like everyone else.

I love that we get to parent in such a way that removes the pressure – we tell our boys daily that they are unique, they don’t have to keep up with everyone else’s achievements because they are amazing in their own way, they will achieve different goals and that is absolutely ok with us because they make us proud daily.

I’ve learned to accept: I love that I’ve learned not to waste time thinking about what might have been but that I focus on the now and that I can trust that however things turn out, it will make me glad that what might have been never came to be.