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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22 thoughts on “The journey thus far…

  1. Great mim! Well done my dear 🙂
    Although I have a request…you commented that you could write so much more about your 10 year journey through infertility, I would really encourage you to do this at some point as it will bring a purpose to your experience & help others who are still on that journey. Remember for the majority of that journey you had no idea how it would end? And feeling like nobody truly understood? It would be comforting for others on that journey to read xxx

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  2. Fantastic Miriam,our journey is so similar ….I’m very thankful I ended up speaking to you through Facebook,you are a wonderful mother and friend x x x

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  3. Miriam thanK you for sharing your joy and blessings. Faith is your path and Grace your journey. You will be in our prayers and are an inspiration for those around you. God bless.

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  4. There is always hope and its fulfilment may not always be what others think it should be – little milestones are enormous rewards, less is taken for granted and appreciation for life so much more. Your faith and hope is a light for others – well done for shining it!
    Mom of a differently-abled warrior 🙂

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  5. In college I read an article about a women who always dreamed of visiting Paris. She bought a guide book boarded the plane with dreams of all the wonderful things she would do and see in Paris. As the plane landed the announced “Welcome to Rome, enjoy you stay” She was upset at her destination, as it had always been her dream to see Paris. She soon relized that Rome was a wonderful destination, although not the one she had planned. It has been more than twenty years since I read that article but I still remember it. My journey with NF has been painful at time, and it is not a road I would of chosen for myself. I have done and achieved so much I would never had been able to do if God had not blessed me with NF. I truely believe it is God plan to bless not only me, but others though my struggles.

    Keeping your family in my prayers

    Marianne
    Oceanside Ca

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  6. WELCOME TO HOLLAND
    by
    Emily Perl Kingsley.

    c1987 by Emily Perl Kingsley. All rights reserved

    I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

    When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

    After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

    “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

    But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

    The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

    So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

    It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

    But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

    And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

    But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

    Emily Kingsley is a writer for Sesame Street and she has an adult son with Down Syndrome

    Christie – mom to Brady 5 years old – w/T21 (aka Down Syndrome) and his bunch

    http://bradysbunch02.blogspot.com/

    http://i26.photobucket.com/albums/c1…erborder07

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  7. Thank you so much for sharing your journey with us, you are an inspirational woman. And your children are very lucky to have such a wonderful mum. I wish you all well with some happiness I between! I look forward to reading more of your blogs. X

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  8. So I just saw an article on Facebook from the Huffington Post and had to find your blog. So after reading some of your most recent entries, I decided to come back to the beginning. I’m a special ed teacher in Texas. I’ve been teaching since 1986 and most of my experience has been with children on the autism spectrum. Currently have 16 students on the spectrum in an elementary school with about 550 students. Thanks so much for sharing your story and building awareness.

    Liked by 1 person

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