Laughing at Life

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I put my little boy to bed tonight and put the monitor on. His room was dark and the house was quiet. He can not yet speak a single word and this last week he has been covered in chicken pox, but when I came downstairs my whole house was filled with the sound of laughter. Isaac was laughing: loud, contagious and hearty laughs. I ought not to be surprised as his very name means laughter!

When I was pregnant with my twins my husband and myself talked often about names. We had a girl’s name picked early on and when we found out we were having boy/girl twins the search was on for a matching boys name. We read through books of names and discussed various options before settling on Isaac. Naomi and Isaac. Together they mean ‘pleasant’ and ‘laughter’. We thought this sounded heavenly. And they both live up to their names. In the first two years I often joked that I should have renamed them ‘sleepless’ and ‘nights’ though!

But there is something remarkable about hearing Isaac laugh himself to sleep. His laughter is my therapy. While he is laughing I am downstairs reading yet another report about him. A report listing his ‘problems’ his ‘concerns’ his ‘difficulties’, his ‘challenges’. Tonights report is about how he requires specialist provision for his up and coming transition to school in August. It is not easy to read and will then be filed in a metal filing box rapidly filling up even though he is only 4. He has what they call ‘severe and complex needs’ but these people need to hear my boy laugh like he is laughing tonight! No-one knows what he is finding so hilarious but it is catching. I look over to my husband quietly reading, enjoying some well earned relaxation, and he is smiling too. If only I could record this laughter to let you hear it. I would love to see you smile too.

I have decided I need to laugh more too. I have been through so much in life that I don’t find at all funny but I can now think of funny moments during those hard times.

My dad died over 11 years ago when he quite suddenly found out he had cancer.He was working one day and 4 weeks later died.He was only in his forties. But I can think tonight of a very funny memory of him sitting sewing buttons onto one of his work shirts and proudly holding the shirt up for us all to see, only for all the buttons to fall off onto the floor! He had missed the holes every time he was threading. Boy did the whole family laugh that night.

I didn’t find it funny when my twins were first born and I was utterly sleep deprived and found it hard to function. But then I think of a funny moment when my health visitor visited and I was crying changing my daughters nappy because I thought she has lost a vital bit and he pointed out it was Naomi I was changing and not her brother! I laughed at that one for weeks.

And then there’s the funny things children says all the time. Today’s one from my daughter was “if you can’t think of things mummy and your brain doesn’t work then you need to change your batteries!” And one time my mum caught my younger brother laughing when he was a child and when asked what he was laughing at he said “I’ve just told myself a joke I didn’t know!”

So here I am thinking of all these funny things and I still have this report in front of me. And then I see a line in the midst of a very serious report that reads “Isaac tolerates his parents”. At any other time I would be questioning what this meant, what is implied by this or even being annoyed at such a silly statement but tonight I am going to take a leaf out of my disabled son’s book of life and laugh at these four words written in the midst of this otherwise depressing and serious report.

They’ll be plenty of time for tears later but for tonight I’m just going to laugh at life and enjoy the journey. I hope you have laughed a little with me.

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The journey thus far…

So this is my first blog.

I’m a 30-something wife, mother and Christian from Scotland. All sounds pretty straight forward but it is anything but.

This year I will have been married 15 years. When I married I expected children would follow soon after. They didn’t. My husband and myself read books, went to doctors, prayed, believed and bought more pregnancy tests than my local pharmacy sells in an average month…but it didn’t happen. Tests revealed numerous problems and finally we were placed on a waiting list for IVF treatment. I had no idea at the time just how many ‘waiting lists’ my family would be on in the years to come. God was clearly preparing me for a longer journey than I ever thought possible. I learnt so much during that 10 year infertility journey but at the time it seemed like never-ending. Deep down I must have had faith as I started to knit and made some faith boxes full of little things for my babies- to-be. My greatest desire was for twins. Sometimes you just don’t realise the implications of what you ask God for.

I could write so much about that infertility journey but finally in 2008 that journey ended with the arrival of healthy twins Isaac and Naomi. Despite doctors saying it was impossible to have children and that even with IVF we had a less than 1% chance of it working, our treatment worked 1st time and I had a wonderful pregnancy (discounting sickness) and had a planned c-section at 37 weeks and 5 days. My life seemed complete. I was truly convinced I had reached the ‘destination’. I was doing what I always thought I was born to do.

I then entered a new world of sleep deprivation, nappy changes, endless feeds and baby vomit. I loved it! Trained in child education, I had dreams of these little babies reading before they were starting school, thriving in the education environment and achieving great things. All parents dream. It’s what parents do and part of the inspiring, cheer-leading, ego boosting role we are given when God blesses us with children.You expect cut knees, the odd bruise and even a number of falls. You expect them to say funny things you will tell them all about when they are older. You expect them to have friends, join clubs, go to the local school. You don’t expect classic autism, still in nappies at aged 4, global developmental delay, sensory impairment disorder, non verbal, neurofibromatosis type 1 and seizures. And that’s just one of the twins!

This blog is going to let you join in my journey in raising my two beautiful miracle children who both have special needs. It’s a journey of faith, laughter, tears and fun, and one which may just make us all look a little different at the journey we are on too.

The children are 4 now and recently our journey has intensified and became even more ‘adventurous’. Isaac was identified as having global developmental delay before he was even 2 years old. He never took his first steps until around his 3rd birthday. He still can’t speak at all. He is still in nappies. He won’t wear shoes or socks and eats more than I do. His sleeping is very erratic. He still drinks milk from a baby bottle and all his play is on a sensory level. Most toys are eaten, mouthed or licked. He loves his sensory area at home though and does a wonderful flapping, marching dance if shown a bag of lollipops. He is a fan of Peppa Pig. He was diagnosed as classic (severe) autism in July last year. He has eye problems which we thought were due to having a squint. However, he was diagnosed in December as having neurofibromatosis type 1. No, I had never heard of it either! In layman’s terns he has tumours on his nerves and these are affecting his skin, eyes and brain. He has brain tumours. Terrifying to write; challenging to live with. His tumours are not cancerous but they can not be removed. They need monitored regularly and we need to know if they are causing him any pain. Our biggest challenge is that he can not communicate that to us. He has no language and can not even point. If I even needed God to help me in raising my son it is now! His Neurofibromatosis is a genetic condition and in two weeks time our whole family will be undergoing genetic testing which may lead to further developments in our journey.

I’ve been holding on for a long time to the fact that his beautiful, loving and caring sister was doing so well. As long as I avoided other children her age I could reassure myself she was doing wonderfully. She can talk beautifully. She will sit and tell you stories from books for hours. She has memorized entire episodes of Peppa Pig. She is an ok eater and she walked at 2 and a half (after needing a walking frame for a few months to strengthen her legs). She plays with a large variety of toys and acts out wonderful stories. But she is terrified of other children, diagnosed selective mute last summer and has never bounced on a bouncy castle (too loud she says), can’t climb, is still in pull ups and has no friends. She craves the same routines we need to create for her brother. She is on one of those infamous things they call ‘waiting lists’ to get assessed for autism too. Until last week I still believed she would attend mainstream school (although I did want her deferred for a year). Last week her name was put forward to be considered for additional support needs education. She’s her brother’s hero, carer, defender and best friend. She sings ‘Donald where’s your trousers’ whenever her brother strips off his clothes. She makes me laugh daily. She has the sweetest, kindest nature and always says please and thank you.

So this is our journey so far. A journey of hope, faith, special needs and special prayers. A journey I am willing to make public in the hope that I can raise awareness of autism, share some thoughts on life and maybe encourage you along the way. I am a faith-mummy. I needed faith to have my children and I need that faith daily in raising them. Every day is an adventure and I hope you will come on the journey with me…

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