Continuing on from previously it has been many years since my cancer diagnosis and my life will never be the same and there are things now that are part of who I am – I am forever changed.- early menopause, and effects from cancer that will always be a fundamental part of my life, my functioning, who I AM. But I have embraced who I am regardless of this knowing that I am “created in the image of God” and I struggle with my health but I hold this “I praise you, for I am fearfully and wonderfully made” Psalm 139:14.
But now I want to talk about another moment – someone who has brought our family so much joy and laughter, we couldn’t do life without her, an integral part of who our family is – one of my beautiful daughters, now in her late teens. But there have been moments during this journey with her that have been unlike my other children, that have been unexpected, twisting in directions different to the plan – moments when the grief of expectations for her, for me for our family were engulfing, where I feel like I’m drowning in the oceans storms – sinking beneath the waves and I remember Jesus calmed the storm with these words “Quiet, Be still” Mark 4:39 and it was calm…. and then he asked the disciples “Why are you so afraid? Do you still have no faith?” Mark 4:40. As I am not perfect and fear can grip me when i feel like I’m sinking, I try to remember, to pray – to have the faith.
She was born 10 weeks early, a tiny premature life that fit in the palm of my hand – so precious and small – born early from an assault (story for another day), a harsh introduction to the world – but she was loved and adored, 2 older siblings that treated her with the utmost care, a father figure that adored her as a small child, a sweet little girl with a far away smile. I knew early there was some thing different about her, she wasn’t like my other children or for that matter children I knew or worked with. before she was one I sensed something was different -she didn’t seem to need our attention, never reached out for affection, was content to be in her own space, with her own company, she seemed ‘quirky’ as she grew up and started kindergarten then school. The kindergarten called me in and thought maybe she had Asperger. Asperger’s, whats that I thought? As I researched Asperger’s I realized a lot of the traits described reminded me of her biological father and members of his family. I felt some shock that I hadn’t noticed before, that I didn’t know much about it, having worked with children. I felt sad for how this would affect her life and the things that would be different for her, that she saw the world differently than others and she didn’t always understand things the same as other people and her sensory needs were different and sometimes hard – I grieved for how her future may look. It took several years and a lot of advocating, just plain pushing and almost rudeness on my behalf to get her diagnosed with Asperger’s and later the name of the diagnosis changed to one I recognized and that is when my heart broke for her. Autism, I remember it clearly – another change in the road where grief for her, and grief for how this could change my life hit me, the expectations I had for my future and for hers I knew would be different than I thought. God does not give us more than we can bare because her original diagnosis was a decade ago and my idea of how this would affect us was tiny, minuscule compared to the reality of how it has affected our family, the dynamics in our home and my life personally – “Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own” Matthew 6:34.
Looking back I know if I knew then what I know now I may have just curled up in the fetal position and never have moved again – but God gives us the strength, the grace, the faith we need as we need it. Over time my faith, my trust in the Lord, and who I am have grown and gotten stronger – and I thank the Lord for this as Autism would not be the only diagnosis she would receive – as my beautiful girl who is so full of life, creativity, and the most amazing sense of humor now has a dual diagnosis which has taken a long time for them to give her – a most frustrating journey. (more on that next time).
Autism has been an up and down journey raising a girl 1) with no inner filter has been at times beyond hysterical and I will share some of those stories of how funny she can be and the joy she brings other later. 2) sensory needs that make you as a parent rethink every outing, every moment, noise, clothes, lighting, heating, foods, toys, books, friendships, hairbrushes, toothbrushes, car seats, her tactile needs, her sense of smell, fears of everyday experiences which just lead to exhaustion. 3) needing lots of down time when as a mother my personality is spontaneous, loud, fairly crazy 4) funny little obsessions – dinosaurs, cats, dragons, wolves, baking – obsessions that become rituals and have to be done a certain way and aren’t as funny anymore. 5) her lack of affection / need for the rest of us – learning its not rejection.
6) her giving nature, baking and selling it for charity, always wanting to help other and support them – showing compassion – a trait not associated with Autism yet i know so many on the spectrum that have these traits.
My precious girl tried several schools that couldn’t help with her high needs, she did reception twice as she wanted to be a cat and crawl around the room and meow all day – this concerned me, but why? she was happy – is it what others think? what society thinks?Eventually we found a small public school that was an amazing blessing for her with staff that understood her and supported her. She functioned quiet well with a Negotiated Education Plan (NEP) in a mainstream school doing choir at the festival theater and finding a niche of friendships that she is still friends with today which i am thankful that the Lord has blessed her with these relationships. it was half way through year 7 where things became harder – when Autism started to affect my life in ways I hadn’t seen coming – her hormones kicked in and the meltdowns started, violent, distressed, uncontrollable meltdowns. it was terrifying for her and scary for us – I started missing work as I needed to be with her and school was too overwhelming.
Then new things started to happen for her – moments where she would lose clarity, hear things and seen things, moments of mild delusions, psychosis – she was frightened and ended up in hospital. For a while we thought it was maybe just part of her Autism – but I had concerns as both sides of her family had a large genetic loading for mental health issues. By the beginning of year 8 it was clear mainstream school was not going to be viable – we tried part time school and home for a while and it went badly, seemed to cause her more stress – now she does school from home which she excels at – but it took 8 months of advocating, getting support letters, meetings and more meetings to make it happen. I was working with one of my closest friends loving what I did – but once again life changed beyond my control dramatically. But God always knows – I had decided to go back to study part time to follow an old dream; just several months before this all unraveled. Once she started high school my plan was to work more as my youngest loves Out of School Hours Care after school and she is outgoing, spontaneous and a little crazy – much like me. So I had a plan but life dealt me another one and I grieved as I wasn’t going to work more, I worried about bills, I cried because I felt I had no control, I was angry at God – didn’t he get the memo about what I was planning next! I was grieving and the path I had expected to follow changed.
It has been a hard few years for her and for us supporting her, she has had several hospital admissions, tried many medications, and has struggled inside her own mind – every night I pray for her to be of sound mind, and I encourage her “God has not given her a spirit of FEAR, but of POWER and of LOVE, and a SOUND MIND” 2 Timothy 1:7. She can be so fearful in her own mind and have delusion moments – the end of last year / early this year I became her carer and i grieved how this looked for me and her – her life is not that of atypical girl her age, there are things in life that will be different for her than others but then God reminded me of something – we are all created different – i was grieving for things that she may never have any desire to do because that was my expectation for her. “I knew you before I formed you in your mothers womb” Jeremiah 1:5 None of this in her life is a surprise to her heavenly father. “For I know the plans I have for you…. plans for welfare and not for evil, to give you a future and a hope” Jeremiah 29:11. God has a plan for her, for her well-being, for her future full of hope. it has helped me to release her into this – not made it easy as there are days she cannot be alone at all as it is not safe, days where she feels angry and violent, days where she wakes in a delusion and is in it all day – but there are good days where she is well, hilarious and bakes, plays games and enjoys all that life offers her. I have had to trust God and instead of sitting in a pile of pity because i cannot do the job I did before or do what I had planned i have taken another road that at first seemed like i was filling in time but now i think this is part of where I’m meant to be heading, where I’m meant to go and there is a plan – it just wasn’t mine, it was God’s.
She has just recently received a diagnosis Schizoid Psychosis which will probably lead to a diagnosis of Schizophrenia – it isn’t going to be easy for her with a dual diagnosis of this and her Autism. But she is a strong, determined young lady – and a diagnosis, a reason for her illness has brought her and us some relief.
Some think it should be kept secret because of the stigma related to mental health issues, peoples fear and peoples judgment – but she is amazing and wants her journey to help others as I want my journey as a mother of a child struggling with these issues to help others. some days are hard, and you feel its going backwards and you question WHY GOD? but I know that he has a amazing future for her.
Day to day life is a struggle for her but she never gives up – some of her recent achievements are she just finished a business course, she will be working paid in back of house in the cafe, she will be getting an apprenticeship / trainee-ship in this (which is what she has wanted to do since year 7 and I had no idea how to go about it – this came to her – i didn’t even know this was where her course was heading). she just entered an art show which we are going to next week and she just won 1 of the top 3 places in a community poetry competition for aged 13 – 18. it goes back to the scripture before “She has a hope and a future”. I know that God will give me the strength for whatever may come as her mother, and he will carry me when its too hard – it doesn’t mean I never sob at 3 am because I do, it just means God gives me the strength to get up and start again the next day. For all the grief she has had, for all the grief I have had and the expectations that have changed where the road has turned in a different direction – she has blessed me and taught me so much.
I leave you with this, someone once wanted to pray for her Autism which i thought was a bit odd but i just observed as my daughter asked why? “Autism is part of who I am, it is how I seethe world and I like who I am”, we like who she is too.
Blessings Skye X
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