A Time to Write

Time to write is a rare treat that is long overdue for me. Orla turns 9 today and as a result I have been feeling an incoming wave of emotion. The urge to reflect, express and hopefully find some release is strong.

It is over 2 years since I last found the time to write more than notes that end up collecting in my diary amongst appointment reminders or the like. Life is busy. Busier than ever in fact because in that time we have welcomed another member into the family. Baby George, ‘the pup’ as he is affectionately called, is now 16 months old.

Orla is doing well but 2020 has been a different year for everyone world-wide.

Covid and the consequent abrupt initial lockdown was extremely hard for Orla. Her paedatrician was immediately very supportive and after numerous phone consultations we felt the best thing was to medicate Orla to help relieve some of her distress. I did find the time to inform our state minister for Education of situations like ours and just how difficult or impossible home schooling was during the first Australian lockdown. Luckily others did the same, and the government listened, so students with disabilities are currently now able to attend their specialty schools despite quite strict lockdown measures currently happening in Melbourne.

Last time I wrote, Orla had just undergone surgery for carpel tunnel and to lengthen her calf muscles. Both were successful as far as we know but I’m not convinced she has full feeling in her left hand still. And although her calf muscle lengthening seems to have helped a little, there are problematic bony changes in her feet which can only be helped by surgery. There is also a high chance her hips will also require surgery to help in avoiding pain later in life. She attended an appointment this week at the gait lab where video footage was gathered to access her walking with and without her orthotics so the orthopaedic surgeons can then discuss and we can decide on the best approach.  We only hope now that the girl who spent so long trying and achieved the ability to walk will not have that taken away from her in the future.

The covid restrictions have really exacerbated Orla’s struggles. It is enough that everyday she potentially feels pain she can’t explain, but now she can’t ask or potentially understand things such as ‘Why can’t I go to horse riding?’ ‘Why hasn’t my grandmother been to see us?’ ‘Why can’t I go to the pool anymore?’ And we don’t feel sure what she doesn’t understand.

I am devastated by the effect on her brain. I have learnt to live with it, learnt to make the best of it, I approach it with optimism mostly and I appreciate what we have for sure, but still I remain devastated. I feel that maybe today, on her birthday, I can fully acknowledge and let myself feel that devastation.

I am giving myself permission to reflect on her birth and the journey it sent us on. To feel the grief and the loss of what her life, our lives should have been. I am so sad that the blessed ignorance of childhood was stolen from her, that she was not fortunate enough to be able to flourish in the usual childhood ways with the freedom to run, to skip, to laugh and to play in the normal or should I say typical way.

I see Orla as the person she should have been, someone who had a perfectly good brain but who fell victim to a terrible stroke of luck, in the way that any person might be inflicted by some disease or accident or trauma that tears away the person you once were or should be. The difference is that Ora’s personality, her humour, her strengths and her weaknesses are only hinted at, are clouded by the damage to her brain and have never really been truly known.

Perhaps, because it’s her birthday, I could direct a few words to Orla herself…

If I could have one thing, other than the obvious wish to avoid this condition altogether, I would ask to have the real you for just a week. I could confidently understand your likes and dislikes and the reasons behind them. Your preferences, your nuance, your humour, sarcasm, the thousands of things you’re thinking and all the things you want to tell me. Everything about you free of the mask of your condition.

I didn’t understand what a diagnosis really meant when I first started this blog, I referred to the physical effects we had seen and would expect to see. We made sure we knew as much about the bone marrow transplant as we could. We read up and braced ourselves and made it through the tumultuous storm that it was. We asked in the room the day you were diagnosed whether you would be able to go to school. We we were told yes you would, with assistance.

What we weren’t told because there was no way to know the school would be for those with severe learning difficulties. That you wouldn’t be able to speak to us with your voice, that we would use the terms ‘non-verbal’ and ‘autistic’ when describing you to professionals. That you would develop self-harming behaviours, that you would bite me and demand from me in a way most parents will never be able to relate.

We weren’t told that you would spend the next few years attending therapy after therapy to achieve small progress, that I would celebrate that small progress in big ways. I didn’t know you wouldn’t want or couldn’t feel the power of friendships or lust or romantic love or equally understand just how much you are loved.

Life can be hard, Orla, but my emotions are for you and the life you missed out on. It is not that I don’t respect the life you do have and I see you flourish in your way everyday and I admire your resilience beyond words but I simply wish that it was not like this.

As I kiss you while you are sleeping each night, I am full of love. You and this journey has taught me so much, made me find love and strength in the deepest part of my being that I would otherwise have never known.

Happy birthday, my special girl. 

 

 

24 thoughts on “A Time to Write

  1. Happy birthday dear Orla!
    Felicity, your expression of your thoughts & feelings for Orla is just beautiful & so honest. Whilst words from Orla would make it easier, the depth & strength of the bond between you both is something to behold.
    Thank you for sharing this & for allowing me to share in this journey with Orla & you. ❤️

  2. Happy birthday Orla. I can’t believe you are 9 already. Such a beautiful strong
    young lady and with such an exceptional family you have and will continue to achieve so much. Thank you so much for the blog Felicity. I think of you often. Much love and hugs to you all.

  3. Beautifully written Flick. One can only imagine the challenges you all face every day, and the strength, patience and courage required. I’m so glad you are occasionally able to grab some time for yourself to reflect. It’s both humbling and inspiring when you share such personal thoughts. Much love (and a big happy birthday to Orla!) xxx

  4. Dear Flic.,  what an amazing blog, so honest but so heartful.  Flick you have given your all and more to your family and you have found that little extra for Orla..  Flick you have done your very best… I have tears full of love and support for you and all your family..Love and best wishes for a special 9th birthday for Orla…. love Lyn xxSent from my Samsung Galaxy smartphone.

  5. Happy birthday Orla.
    Thank you Flic for sharing your innermost feelings and experiences.
    Think of you often.
    With love
    Nettie xx

  6. Happy birthday Orlando.
    Thank you Flic for sharing your innermost feelings and experiences.
    Think of you often.
    With love
    Nettie xx

  7. Hi Flick, What an amazing blog you just wrote. You tell it how it is and even more. Thought I had some idea how life is for you but after reading the blog I know nothing. You are doing an amazing job and I hope that you get the rewards for your efforts. Regards, Theo

    Sent from Mail for Windows 10

  8. I sincerely hope and pray that Orla does in some way can feel the Mother’s love that you unconditionally have for her Flick. Your story is inspirational!
    Love to you & Ed, Nell & George and of course Orla 😘
    Happy Birthday Orla 🙏🏻🌈

  9. Dear Flick, I share you heartbreak at what this terrible disease has done to Orla. Hollie was less severely affected than what you have described, but now it has caught up with her. She’s now close to 46 and has dementia and very high dependency. We brought her back home 3 years ago to care for her, after about 15 years in a group home which she enjoyed very much, because of the dementia and some other serious health complications. We are uncertain about how long she will be with us. A-Mann had a lesser impact on Tim but we can see him slowing down and losing language and initiative. Knowing that it may have similar impacts on him is a terrible thing to contemplate. We try to make the most of the good moments, but significant event like the birthday milestone you have described, surely can bring it back harshly. I just hope you and Ed can find some good moments when the burden isn’t so strong.

  10. Happy birthday Orla.
    An amazing yet heartbreaking email Flick. Your unbelievable gift of allowing us feel your emotions and be in the room with you is a rare one.
    We can only imagine what you feel and how you have all the time the love and optimism and strength to find the plus in each situation.
    Covid 19 was something you certainly did not need.
    Sending you deep admiration and awe at your mental and physical stamina and love to the five of you.
    Bless you xx

  11. Happy Birthday Orla. We are thinking of you & your family at this difficult time. We miss you going by on the tractor but are watching Theo make a wonderful recovery from his knee operation so that he will be ready to go when you are allowed to come over to Tassie! X X Love Judy & Kerry

  12. Hello,

    I read and responded with a loooong comment and then ticked the box to see if there were any other comments. When I logged in again tonight to read other comments, I noticed my comment did not appear, I remember this happening once before? Not sure what happens. Anyway, wanted to let you know that I read your heartfelt post and it was beautifully raw and real. Thanks for being so open about how it REALLY is. We are in for more tough tough weeks ahead. Hang in there, we are all going to get situational depression but that means when it is over, so too will be most aspects of our depression. K xx ________________________________

  13. Flick, firstly- wishing Orla a very happy 9th birthday! What a lovely piece you have written and thank you for the insight into your lives with your growing family. Congratulations to you also on the birth of George! I wanted to say how much I admire your strength and resilience through the struggles your family have faced with this condition for dear Orla. I hope that Orla can go back to enjoying her horse riding and her swimming soon- this COVID has obviously impacted your lives significantly and we just hope that there is light at the end of this very long tunnel! Take care, stay safe and once again thank you for sharing your thoughts. Jill 🙂

  14. Happiest of birthdays Orla. I have such a heavy heart after reading this again for a second time. Flick and Ed, your family unit and what you bring to those children is outstanding. So much love, commitment, reflection and determination to make sure Orla leads a life that she can enjoy, unfortunately made hard during COVID. The raw emotion you expressed is so real and I wish I could take some of the heartache away but I also know you are having many moments of joy watching Orla gro. Nellie and George, you are so lucky to be a part of this family where you will learn so much compassion and empathy. Richard and I send so much love your way and we would love to see you after such a long time, hopefully when life is less hectic with COVID.

  15. Dear Felicity, such a sad and poignant post. My heart goes out to you,Ed, Orla, Nell and George, plus the extended family. Life is tough enough, but having a child with special needs brings so many emotional and physical complications along with it. I admire your strength and dedication in ensuring Orla has the opportunity to be the best person she is able to be. Much love Helen

    Sent from my iPhone

    >

  16. Happy birthday to your special girl. What great insight this is to your everyday life. It made me stop, reflect and appreciate. Sending warm regards Flick. X

  17. Hi Felicity
    Jill share your blog with us. I can’t believed its 9 years ! Flick what a journey you and your family had! The progress that Orla had is a testimony to the love and care she receive.
    Happy Birthday Orla
    Keep safe
    Love
    Cathy (Cathy Thien -don’t know if you remember me )

  18. Hi Felicity

    Thanks for sending me the new post on Orla’s Blog. My apologies for taking so long to get back to you.

    You have written so honestly and beautifully with such depth of feeling. Despite the obvious pain it was brave and no doubt therapeutic giving yourself permission to “feel the devastation”. You have been living with it every day for nine years. It needs a release sometimes and what better occasion than Orla’s ninth birthday. As you say it’s Orla’s grief, your grief, her father’s and her siblings as well. There are so many levels and layers of grieve associated with Orla when measured against a child leading a “normal” life. People often don’t understand the continual on-going living grief that afflicts families who have a special needs child. Grief is not just reserved for the death of a loved one.

    The on-going medical appointments and interventions for Orla must be a continual source of concern for you regarding her physical wellbeing as well as practically exhausting for you trying to navigate them all. At the same time trying to meet the needs of the other children. On the subject of home schooling I have heard other parents with special needs children talk about how difficult it is. Difficulties that some educationalists don’t understand.

    Despite all of the losses that you see Orla living with that are so sad it is wonderful you can identify her strengths. The gains she makes within her limitations and the resilience she demonstrates which are such a testament to her courage. You recognising the gift ( love and strength ) that Orla has given you is so profound and emotionally insightful. She is such a well loved child and at some level I am sure she knows it.

    Belated Happy Birthday Greetings to Orla ( A “Leo” )

    Kind Regards

    Kevin

    Kevin Carlin Family Support Practitioner Level 1, 233 Sydney Road, Brunswick, Victoria, 3056

    0408 910 878 kcarlin@vsk.org.au http://www.vsk.org.au Very Special Kids acknowledges the Traditional Owners of the land and waters throughout Victoria and pays respect to them, their culture and their Elders past, present and future.

    • A little girl that has taught us all so much. Funny, determined and oh so sparkly! No one, absolutely no one I know has sacrificed and committed so much unconditional love and resilience for their child, than you Flick. When you are kissing her goodnight, know that she means so much to so many and that we are that lucky ones to know her. Xx

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