We are adjusting to being out of the hospital. It has been odd not to have nurses and doctors waking us up in the morning and machines beeping at all hours. I am surprised what we got used to.

I am missing the help for Ryleigh’s care that is only one call button push away. We have had a few issues that I have had to work my way through. Ryleigh does not have the confidence in me yet that I can manage and deal with things as they come.
She has had some oozing from her incision sight. I put a makeshift bandage on it and told her it should be okay. But, she insisted we call the doctors. I called and luckily it was the surgeon who knew Ryleigh. We went into emergency and he looked at it. Reassured us that it was not infected just some fluid that collects at wounds and it will drain for the next few days. He put a piece of gauze on it and sent us on our way (with extra supplies of course!). Chloe was kind enough to remind Ryleigh and myself that I did the right things on my own and that I handled things very well. Nice to have the encouragement. Truthfully, I feel like I am flying by the seat of my pants…wondering if things will ever become routine again.

We ventured out to Langley yesterday to watch some of Ryleigh’s friends and my former students play basketball. It was so lovely for me to see all the bright, sparkling faces of these girls. It was even more delightful to see how much pride Ryleigh took in getting ready for the outing. She was also so brave about her ostomy bag, she does not like to wear it underneath her pants — “Really Mom, it is like putting a rolled up sock in your pocket and wearing it all day – totally uncomfortable”. Ryleigh has always been one for comfort vs style. Personally, I think it is very brave and courageous of her to be so open and honest about her ostomy pouch. She even makes the effort to decorate her pouch with sharpie markers to make it more eye appealing. What a kid!

For me, it is adjusting to the process of caring for a child with an ostomy bag. We purchased a diaper bag because Ryleigh needs to have extra sets of materials, wipes, extra clothing, and other supplies. This is just in case we are out and about and something happens. She is not embarrassed about taking the bag and even calls it her diaper bag.

Now, I make it sound like Ryleigh is adjusting wonderfully to this new way of living for her — she still struggles with the whole situation. There are times, understandably, she has a complete melt down and gets angry and mad. She still refuses to empty her own bag as it really grosses her out. I do that for her — not the most pleasant job but motherhood seems to prepare one for this kind of thing. She has had some crying times wondering why this has happened to her. But once she gets it out of her system she is good for awhile and keeps moving on.

I am wondering if there is a disorder called Post Traumatic Sick Child Disorder? Now that (crossing my fingers) we have completed this stage of getting Ryleigh better I wonder how I will adjust to the new role that I will play in her life. I am responsible for her injections, bag changes, mood swings, emotional challenges, catching up on her schooling, nutrition and fluid intake…..and how will I adjust. I am realizing that life goes on after your child has been hospitalized. I romanticized the idea of Ryleigh’s discharge – thinking that things would be easier. Currently, they are just different. There are still worries, stressors, and responsibilities — they are now on my shoulders more then ever. I am fortunate to have the knowledge of my past experiences and the support of family and friends to know that I will get through this stage too. Normal is what normal is….

5 responses to “Normal???”

  1. Ray & Laura MacKenzie Avatar
    Ray & Laura MacKenzie

    You are truly an inspiration to those of us who THINK we have trials & tribulations in our daily lives Jo!!!
    May God continue to bless all three of you with perseverance & strength…


  2. I gave up on normal a while back, I mean really what the heck is normal anyway??? Day by day I say!
    Have a wonderful Easter!

  3. Hi Jo,

    In your blog this morning you wondered if there was a kind of post traumatic stress syndrome that comes from hospital situations like the three of you have been through. I would say that from my own experience the answer is definitely yes – especially for young children, but also for adults and caregivers. The hospital experience is full of emergencies and problems to solve, surrounded by support and fear and helpers and the exigencies of machines and schedules. There is trauma in all of these things, but also a kind of security that keeps one living more in the present and focused on solving particular problems as they happen. In the hospital, the focus is on stopping the pain, getting healthier, getting out – and there is usually the hope that these things will actually happen.

    Leaving the hospital creates a sudden vacuum. The helpers are gone, the schedules are gone, the immediacy of the pain or the emergencies is mostly gone, and suddenly there is a bigger future to consider. One starts to wonder about going back to “normal” and often finds that “normal” is not at all the same. There isn’t a “normal” anymore.

    I don’t remember losing my eye, but a part of me still mourns its loss, and still wonders about what might have been, if the illness had not happened. How would my life path have been different? Would it have been better or happier or more successful?

    Ryleigh – and Chloe too, have both been through all of this. Both have had the fear of death and loss instilled in them from a very early age and have experienced the pain and incapacity of illness. They have come close the edge of the cliff of fear that we humans so desperately try to avoid and hide from, and they have come back again. They have lost, and they have gained. They have lost a certain degree of innocence, lost some of the security that comes from not knowing what the suffering of the world is like. They have also gained an immense ability to understand the pain of others, and with this they have gained the grounds for compassion to develop.

    At first, however, it will probably not feel like there has been very much gained here. There is a grief process, letting go of what might have been and letting go of a life that will not be the same ever again. One life is gone, one Ryleigh has died and another one is carrying on. One Jo has also died, and one Chloe, and new ones are moving ahead on different paths than would have been without this sickness. This is true, of course, of every moment for all of us: we continually die to one choice or path as we move into another. For Ryleigh, and for you and Chloe right now though, the contrast between the lives is much stronger and more visible.

    I have a few thoughts about things that could be helpful as you move into this new future. Please take them as suggestions from someone who is not there – use what is helpful for you and ignore the rest, even if that means ignoring all of it.

    – As in any case of death and loss, there is a grieving process involved in this. There will be times of denial and trying to forget that it has happened, times of anger, “Why me?”, and fighting against it, times of grief and tears and sadness, times of fear and trying to hide from the new reality and there will also be gradually more times of acceptance and even recognition of the gifts that have come from the experiences. You probably know this already – but it is helpful to explicitly recognize that there is a grieving process. Ryleigh has literally lost a part of herself, as well as figuratively. You have all died to what you were. A new reality is unfolding. Give yourself the gentleness and patience to release what was and grow into acceptance of what is.

    – There will probably be many times when Ryleigh – or all of you – wish for what might have been. What might that other life have been like and wouldn’t it have been so much better? It may be useful to have a box where all of those “might have beens” can be stored. Cut out pictures or drawn pictures, writing, objects – whatever represents the “might have been” can go in the box. These things can be looked at, cried over, loved… but when it is done each time, the cover goes back on the box and box is put away. Eventually, the box will come out less often, and there will be a time when Ryleigh is ready to let go of it for good. At some point, it can be burned to release all of the might of beens that “are not”. They are not real, were never real. There is a time when they can be released.

    If she does this, there should also be another box. This box can hold the “what is”. At first, this box might be full of things to be angry about. Ostomy bags, feeling different at school, not being able to do some things. It is OK to put all of those things in it, and OK to be really mad about them. However, keep opening the box and also keep looking for the gifts and positive things that have come. When you find them, add them to the box too.

    -There is a Tibetan practice called Tonglen that may be helpful in finding the gifts. In this practice, one breathes in as if the universe is simply breathing you. Don’t put too much attention into it, but allow the breath to fill your chest and stomach. Breathe deeply. As you breathe, breathe in all of the painful feelings – the anger, sadness, grief, sorrow, loss, and pain. Breathe them in with courage, breathing in your own feelings and also the feelings of others. There is so much pain in the world and Ryleigh and Chloe have both had the opportunity to experience it.

    The beauty of breath is that it always comes in two parts. There is breathing in and there is breathing out. In Tonglen, breathing in is accepting the painful feelings with courage. Breathing out is allowing these feelings to be transformed. You do not have to transform them – it is just the way it works that by accepting them with courage they have already been transformed. When you breathe out, breathe out knowing that you are sending compassion both to yourself and to the world.

    Breathing in the difficult feelings that we experience with the courage to accept them and not trying to change them or make them better has an automatic transformative effect. Do not try to fix them, do not try to heal anything, do not try stop the pain or make it better. Do not try to do anything at all… breath in accepting things as they are. Breathe out, releasing the breath with compassion. The transformation happens automatically, on its own. There is nothing else you need to do.

    This practice can be helpful in finding strength and courage, and also in finding the gifts of what is and letting go of what might have been.

    – As a caregiver, and especially as a parent caregiver, it is so compelling to take on the suffering of the child, to try to emotionally carry the child and take their pain. This is different than Tonglen. Tonglen is a practice of accepting and releasing, allowing the pain to transform itself. If you can, when you can, allow Ryleigh the dignity, self respect, and integrity of owning her own struggles and solving her own problems. These words are probably not necessary – I’m sure you know them. But sometimes a reminder is helpful. I know I get stuck in this often enough…

    You are all in my thoughts. I hope that you will find not only difficulties with transitions, but also sunshine and smiles and humour along the way!

    Lots of love to you all,


  4. what Todd said! happy to hear the new healing process has “begun”. we look forward to seeing you soon.

  5. Todd, not sure if we ever met…but wow. You touched my heart with your words and the strength in your advice for my sister and nieces whom I love dearly. I have always believed that we cannot get through difficult times on our own, relationships are the cornerstone of what keeps us going. Thank you for being there for my sister. Jo and girls, love you more everyday and thank you for showing me the importance of love, family, and life.

    I am hoping to come help out a lot this summer! I am no stranger to poop and I love to learn new things if you will teach me!

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