diagnosis

 

My old adversary anxiety is back to bite me. Fear wakes me with a slap in the face every morning. I can’t talk about it. When something is really wrong I shut down verbally. I should talk to her at least, ask her how this day is for her but I just want it to all go away.

On all hallow’s eve 2012, youngest was diagnosed with severe ulcerative colitis.  ‘Debilitating, lifelong, worst case scenario full removal of bowel, lifestyle impact, her age’ on and on went the bum doctor as he’s come to be known in our house. ‘Keep her alive, please stop the bleeding’ from me.

Daughter is coping better than me for the most part. And she’s the one that has to deal with this, manage it. She tells me she feels a little better day by day – the steroids are kicking in. But has the bleeding stopped? I’m too scared to ask. Will it? I’m not coping at all. A mother should be able to protect her child. I’ve failed. And I’m so so sad for my darling little girl. Sweetest natured thing that ever walked this earth.

When she walks past me on her way to the bathroom my heart rate increases. Will there be a lot of blood, should we go to ER? When she tells me she’s going to have a shower I feel dread. Will she faint, feel dizzy?

Yesterday, four doses of steroids down, she told me she was bored. She was able to go hours without the bathroom and wanted to go out! This is of course such a fabulously positive sign but I was terrified. We went for a short drive. Tried a bookstore that she has a voucher for. I was glued to her elbow and the very short outing must have annoyed her as much as it was a nightmare for me. On the way home we stopped at the local supermarket. Her first outing in how many months and standing looking at muffins (and deciding not to buy one  – we don’t know what she should be eating yet!) I realised the bum doctor was standing next to her!! We talked about how weird that was for the rest of the day.

Synchronicity. I told her about the time, years ago, that I was driving ‘home’, back to my old home town after a long absence. I was nervous on the big highway and emotional about the trip. Suddenly, and I really mean suddenly, a car pulled in front of me and drove slowly there for a while, as though guiding me. My long dead father’s initials were the number plate and I swear it came out of nowhere  – I had seen no car in the rear view mirror or side lane. I felt very comforted.

I believe the bum doctor sighting was comforting as well. It was ok to be out. It was ok to go on with life. We didn’t speak. He didn’t acknowledge us  – I’m sure he knew we were there but it wasn’t appropriate. He was out with his children after their weekend sport.

I know that all life is Karma. My boss keeps telling me to use the Dharma, I will get through this. Rang me from his overseas trip to check on us. Now that’s a nice boss. It’s very hard to be a Buddhist faced with this. I guess any faith is tested in times when you really need it most. How can this adorable, beautiful girl have such bad karma? I just cannot believe that. (I’m in the ‘why me’ stage – why her?) I do believe, and have often been heard to sprout, that everything happens for a reason, there is no such thing as a coincidence. How can that be now? Where can there be a reason for this?

Each day we start again. Yesterday she was bored, upbeat. Today I woke again in fear and not ready to tackle the hard questions and find out how she’s really feeling today. It’s going to take time. She’s the one who has to deal with this physically and she’s already starting to accept that – happy to have an answer, a diagnosis. For me it’s a mental issue and almost a year of worrying left me in a heap on the floor. I know I need to talk to someone. Next appointment is Tuesday and maybe the bowel clinic has a therapist. If not I’ll find one this week. For both of us – but separately.

Something like this and all your wishes blow away in a feather’s breeze. Nothing matters. Just looking after her.

Today friends dropped beautiful white roses on the doorstep; and then the best thing to come from this, from anything. My son came to visit his sister this evening. He rang her to see how she is and then said ‘I’ll drop in’ and he did. The estranged one.. he is making baby steps towards us and I couldn’t be happier. Amazing when I thought happiness was gone?! A psychic once said to me your daughter will bring him back to you..

It’s all a bit exhausting. Emotion wise it’s four seasons in one day..

 

92 thoughts on “diagnosis

  1. wishing you strength, and a speedy and full recovery

  2. I’m in the same situation as your daughter, I wish her well.

  3. Stay strong ….I am glad your son came to see his sister. Focus on the good bits! Julia

  4. Its the worst thing ever- watching one’s child suffer! Be strong – they need to see that more than anything! Best wishes.

  5. Send loving thoughts full of strength.

  6. Big loving hugs to you all :)

  7. Those why questions that seem to make no sense now are so hard to accept but maybe the goal is not to makes sense but look to what comes ahead and possibly you are already seeing part of the answer to the why as your son keeps reaching out. Still reconciling emotion with reason is a struggle–try to give yourself permission to grieve what was before you accept what is.
    My best to all of you.

  8. You wrote it all down.. excellent, really good job, and you were so honest and wonderful. Who would not feel dreadful when a child is faced with this. But it is manageable. Time will show you this. And first you must begin to manage yourself. KEEP WRITING. My mother died very slowly from cancer when she was quite young and she had a diary with her all the time. At the end she said to me, burn those diaries. They are just rubbish dumps. I dumped it all in there. This is how she achieved her stillness and her trust in us to carry on without her. This is where she put her grief, then she shut the book on it. I don’t know if any of that is useful . But writing that all down and leaning a little on us is a good thing.. take care .. your son will come, give him the space to park.. find your stillness first.. c

    • Thank you for suggesting it. It really did help so much to write it down and read the supportive comments.
      Did you burn the diaries c?
      My friend that died in September did the same..she was writing a book for her children then her sister read it and said ‘that’s your therapy, no one else needs to read that’ and she was content just to have written it for herself then…

  9. free penny press

    Sending positive vibes to you and your family and your son coming over to visit is a sign of more goodness to arrive on your doorstep. :-)

  10. unfetteredbs

    clicking like for support Annie. I will keep you and yours in my prayers. Sending my good vibes along as well. Stay strong and stay positive
    Audra

  11. Annie, as a parent, I came to understand that it was not my role to protect my child but, rather, to support her in her journey. The questions, the doubts, the “why me,” “why her” are all natural in our human expression, don’t beat yourself up over that. And how wise of you to seek support for yourself, and additional support for your child, separately. Each of you has her journey that happens to entwine. So happy to hear about your son…baby steps, Annie, for all of you! xoxoM

    • Thank you so much M, I am coming to understand/see your comment (similar to a great talk with my elder daughter the day before!). Having been a single parent since they were very young I have been very emotionally invested..but we have separate journeys…

      • Yes. You bring up an interesting point, Annie, that of starting the journey of parenting with a partner and continuing it partnerless. The initial commitment is different, I think, because it’s made in the spirit of sharing of collaboration. When that original fabric is torn, we are left with something different than we started with and, possibly, just don’t know how to make the thing whole again. As a single parent by choice from the start, my view is this: we must first be whole ourselves in order to offer our children our best parenting support. All those self-care things that we put on the back burner as luxuries to be indulged in whenever are, in fact, critical to our ability to be better, more able care givers. By giving to ourselves first, we create reserves which we are then able to pass on to our children. In the process, we are also teaching them to value themselves sufficiently to take care of themselves first. Not in a selfish way, but very much in a Self-ish way. Know that your children chose to experience their human journey with you as their mother. No matter how it may appear to you at any given time, you’re all in the right place, with the right people, and completely in the embrace of Love. Hope this helps, my dear friend! xoxoM

        • It helps a lot M, you make such good points and I wish I’d had that in counselling way back when my marriage was ending and I was grieving something else entirely.
          I did the best I could and with 100% effort but I made some glaring mistakes in parenting…
          But yes they chose me and we will all get through this together – the first career she thought of in high school was counselling funnily enough…then she ended up doing different courses at Uni..still at uni but feeling the pull back to counselling even before this diagnosis. I’m sure it will lead her to helping others. x annie

          • Please don’t be so hard on yourself for what you perceive as mistakes. They all are learning opportunities, some harder than others, opportunities nonetheless. Annie, no matter what any of us may think at any given time, each and every one of us is a perfect expression of Perfection expressing and experiencing. xoxoM

  12. I want you to know I’m thinking of you, Annie, and I care. Was so glad to read your son came to visit.

  13. There’s no problem defining ‘helplessness’ when challenged with a loved one’s suffering, is there my sweet blogging buddy? I remember a friend telling about the time her mother was in such dire pain. My friend was beside herself with a huge sense of helplessness. Her spiritual teacher (Buddhist I believe) pointed out that her suffering only doubled the suffering and did nothing for her mother.

    Prayer seems too easy. It seems too fuzzy wuzzy and ineffectual. But you know how that energy has incredible power. Visualizing your daughter’s bowels as healthy, pink and strong does wonders. (I’m doing that right now for her as I write.) Maybe you are already doing this and hopefully she is too. I blast conditions with golden, healing energy and as a qigong master suggested, visualize the disease leaving the body as butterflies. Follow your intuition about flowing that healing light all throughout both your bodies. Both need healing right now.

    I’m sending each of you one of my very effective and Loving golden blankets. Visualize yourselves wrapped in one. Feel the healing happening. Feel the relief, the comfort and the Love that is sent from Source.

    You will both be in my thoughts and healing prayers, Bodhisattva.

    • Dear Souldipper – your words are so calming and comforting. Breathing rate lowers just reading them..daughter read them too and was smiling. thank you
      I will finish my replies and then go to sleep wrapped in that golden blanket. x

  14. My thoughts are with you.

  15. How very powerful and heavy this must be. All my thoughts and love are with you and your family. Keep trudging and learning, that’s all you have left to do. I’m so sorry to hear of this…sending love and light!!

  16. It is when we are faced with challenging problems such as your daughters, that we need to live in the here and now. My thoughts and best wishes are with you.

  17. gita4elamats

    It’s OK, mum – it’s a death sentence, she Will improve and learn to control It.
    So, spirits up and stay positive, please!
    Love & peace!

  18. You are a very strong woman, Annie and you need to stay strong. At the moment it seems your daughter is coping well and you need to support her through that :D

    I know people say everything happens for a reason and I am a true believer in that. When my young nephew was diagnosed with a brain tumour I thought it was the end of the world. As it turns out he survived and a couple of years ago he started up ‘Brain Tumour Alliance Australia’. He helps SO many people and now I look back and wonder who would have helped these people if he had never become so ill and had taken a different path in life. I credit him for saving my best friend’s life this year when she found she had a tumour and had nowhere to turn. He organised a specialist in Brisbane and she flew down there straight away for the operation. It’s amazing how things happen…

    • Thank you Dianne :-) So wonderful to hear about your nephew. We are beginning to do better already. Physically she feels a little better each day so we’re hopeful the treatment will get this episode under control. Meet another specialist tomorrow. She’s already talking about doing something with this like your nephew did! Forming a support group, working with the association later..

  19. gita4elamats

    SORRY, TYPO -it’s NOT a death sentence!
    I repeat, NOT a death sentence!
    So, spirits up and stay positive, please!
    Love & peace!

  20. Sending both of you healing love and light… ditto your son.
    Thank you for checking in during the Hurricane… your kind wishes were appreciated!

  21. You have been nominated for the ‘Very Inspiring Blogger Award’. http://crosshearted.wordpress.com/2012/11/05/blogging-award/

  22. Annie,
    Hugs all around–for you, your daughter, and your son. I want to write something that will make everything better, but I can only come up with cliches. God only gives us what we can handle–sounds like your daughter can handle a lot.
    I want to point out that in terms of karma, you and your daughter are banking some serious good karma by sharing your story with the world. You make me appreciate things I take for granted. Your story makes me dig deeper into compassion. Your daughter’s courage makes me want to be more courageous. Thank you, thank you, thank you.
    Love and prayers,
    Kozo

    • Kozo your posts are full of inspirational self help. I think you have a lot of courage even if you don’t recognise it. Thank so much for all your help, your wise words…and your mention of the good karma we are storing – that’s encouraging :-)

  23. [...] is my bumbling attempt to lift up 1) my fellow blogger Bodhisattvaintraining who got some intense news this week and 2) all our friends and family on the East Coast who probably can’t read this [...]

  24. Oh Annie, I am so sorry. Our children’s pain is so much worse than our own. When my daughter was going through her trials in September/October and she asked “why me?” which doesn’t play well with her mother, I said, “why not you?” Perhaps this will teach her something to help others in the future. To empathize and feel others suffering. I don’t know but I don think everything has a reason even if the reason is just poor cell structure or something. I’m so sorry you are going through this. Hugs to you and your daughter. And definitely get some help with your anxiety, you are a great mom and it is no wonder you are stressed. There would be something very wrong with you if you weren’t.

    xoxoxo maggie

  25. So sorry this is happening to you and your daughter and happy to hear it’s brought your son closer. Chronic disease is not fun. I have my own experience. So many ups and downs. But, it’s good when I notice the blessings. Take care of yourselves. :)

  26. I am so sorry for this to happen to you and your family. I have f friend here who has one daughter with this and another with crohn’s. They have struggled for years but the daughter with UC is now doing really well. They have tried so many things and finally settled on a diet and supplements that leaves her pretty symptom free. At present they are trying to get the youngest daughter also sorted through these same methods. It is dismaying to watch these girls over the years struggle but a joy to see some success. I wish you and your family well.

  27. Sending good thoughts your way. Take care.

  28. [...] more than two weeks since the diagnosis and theoretically she’s a little better than before we knew, shouldn’t that be good? [...]

  29. I am so sorry for you and your family. The last thing in the world is to in anyway blame yourself for having perfectly natural, normal, understandingly intense feelings and fear in response to something like this. It does help to talk it out. I am really impressed by your ability to put your feelings out here and let people reach out to you and your family. This is so healthy and strong of you. You can make tons of progress dealing with anxiety and then something like this hits and you think you’ve relapsed. The meditation and other skills you have learned are still there. They are waiting for you and will be there when you are ready.
    Baby yourself, be kind to yourself, do not criticize yourself. Think how much you are helping your daughter. If you can’t see this, trust me on this, you are! You sound like such a wonderful mom! Thoughts, hugs, everything good is winging you and your daughter’s way.

  30. [...] me for the beautiful blogger award, but because her courage, honesty, and empathy in dealing with a difficult situation has inspired me to be more like her in my daily [...]

  31. I read every word – can’t offer any advice, just empathy.

  32. Through your words I could feel your pain – Something so very difficult, you put into words so heartfelt & lovingly. Sending you & your family positive & healing energy…

  33. [...] to accept Keith’s challenge; and after the initial horror and anxiety that went with the diagnosis it seemed like such a good idea to intentionally count blessings. So I noted something every day in [...]

  34. Dear Bodhi, I’m just now reading this. I’m so sorry to hear the news. My niece had the same condition. Diagnosed–I think–at 15. So many long hospitalizations. Eventually she opted for surgery. She’s 18 now, away a uni. Please feel free to write to my email…. I’m sure she would be willing to share more with you if you have any questions. // I’m behind on my blog reading, but will catch up ASAP. Sending healing thoughts your way. xox

    • Thanks Ruth, that’s very kind. Your niece was so young! Daughter is 21 and at uni…surgery for her would mean whole bowel so fingers crossed for the meds working.
      She’s a bit better physically and we’re both much better mentally now…thanks x

  35. A moving post, thank you. I hope things are going well for all of you.

  36. [...] watched. That was the low point. Booked a celebrity chef’s restaurant months ago, before the diagnosis. Both girls love ‘Masterchef’ and meeting George would have iced it. He wasn’t in and his [...]

  37. It gets better, and easier! I’ve had two flares this year – one while pregnant – and Baby & I survived! The trusty doctors confused UC for appendicitis so I’m down one appendix, but from what I’ve read it’s not a very useful part anyway so I don’t miss it too much! ;) My GI had the word FINGER in his last name, and the assistant for the colonoscopy had the name BUTT in his – odd choice of careers for the two of them and what an odd pairing, eh? Finding things to laugh at during awful moments helps!

    May your daughter travel an easy road to remission and may it be a long visit there!! :) sending healing thoughts and prayers…

    • You are wonderful :-) Thank you for the smile in my day, my week! Finger and Butt ha ha ha. And the appendix? (or lack of!) Let’s call that weight loss..

      This week we went to a support group for the first time and half way through a guy came in, had to hear the end of my daughter’s story with description of diarrhea, and time in ER / blood transfusion…and then when asked to speak the look on his face told all – he was meant to be in the next room, an Amway sales meeting ha ha ha…

      Thank you for that lovely prayer at the end…I wish an easy road for all but so far not so good sadly. I so much hope the second choice of treatment works, surgery is looming…and terrifying.

      • If it wasn’t for the steroids I would be all over the weight loss but sadly baby weight and steroid weight linger. More of me to love ;)
        Oh how I wish I could have seen that poor man’s face!! That is hilarious!!

        It will be a battle for your daughter but one she can manage. She will surprise you, and even herself. I have a friend on remicade and she swears by it. She’s been on it for 10+ years and was told 10+ years ago that the only way out of the hospital was with a bag. She got married, had a baby, and lives a very full life with no symptoms. And she has UC and crohns.

        There is light, the tunnel is just too Dang long!

        • I know what you mean – was joking about the appendix being weight loss. My little one has puffed up like crazy on steroids..

          Thank you so much for your kind and caring words..I really appreciate them. My daughter has already surprised, amazed and inspired me. She is dealing with it all so well. And it sounds like you are too? To be this helpful to others..

          And thanks for that story about your friend. Let’s hope that Remicade (or Infliximab as it’s known here) is as wonderful for both you and my daughter as it has been for your friend.

          • my fingers are crossed and I feel comforted (if it doesn’t sound too awful) knowing that I’m not so alone in this battle. It’s hard to deal with on my own, my husband is great as it my family, but it’s kind of nice (sadly) that there is someone out there who knows exactly what this is all like.

            I’m off the steroids now and looking forward to ‘deflating’ :) If I had more removable parts like the appendix, I’d be all over having them removed so I could drop the extra pounds the steroids put on! ha!

          • No it doesn’t sound awful x.

            My daughter found the support group we went to comforting for that reason – meeting others in person who have the same issue. The stories and treatment methods are all so different though – confusing!

          • The disease is so unique to the person, hence why everyone has a different trigger and treatment plan!
            I think that’s what makes it so hard to diagnose and then deal with…

          • Agreed – can be so frustrating, both dealing with it And trying to explain to others..

      • Thank you for my laugh of the day – poor sales guy! I know how my husband and family respond to my experiences, I couldn’t imagine just happening upon your daughters story!

        From what I know Remicade is supposed to be a wonder drug, I’m not sure if that’s the one your daughter will go on – but all of these biological drugs seem to get great ratings from the specialists that I have. A family friend has been on one for 10+ years and swears by it. She says that she forgets that she has colitis, crohns, and IBS. I hope your daughter can say the same!!

        Surgery is terrifying, I’m holding out as long as possible, but fear I don’t have much time left with this part. I feel like I’m donating my body to science piece by piece as opposed to at the end of my life! Either way, I hope someone somewhere is learning something!

        Good luck to your daughter on her upcoming colonoscopy and I will cross my fingers for good news – god knows you need it!!!

        best wishes and positive thoughts…if you wouldn’t mind sending some warm weather this way – we’ve had at least 2 feet of snow dumped on us today! :)

        • Yes we so need some good news. I’m tired..

          Hearing that encouraging story about Remicade is positive – having the first option not work left us both so flat. You know that feeling when you’re on steroids and you feel so much better – it didn’t occur to us that when she tapered off we’d find the treatment actually hadn’t worked. So now we approach Remicade less than hopefully but we need to try and get the positivity back.

          I have never experienced snow! Would love the share the warmth…looking forward to winter!! (which is very mild here by comparison)

  38. Very stirring. Having dealt with my daughter’s Celiac for so many years… and her initial horrific health… I can relate. Nothing is harder than watching our children suffer, and knowing that we are (essentially) helpless. Breathe. Breathe deeply.

  39. [...] littlest one, the one facing the great fight, is what you might call a wise old soul. I’d say she’s been around a few more times than the [...]

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