In this holiday season, I hope we do not forget the families that are facing bittersweet moments…you all are in my heart and on my mind. This is an article by a friend a pray for daily, and I hope it will help anyone wishing to help families who are facing childhood cancer or other chronic diseases.
My friend writes:
I am the mother of a child with cancer. Long ago, my walk to work would take me past our local child cancer support office and I would think of the parents who made use of the service, wondering how those poor families managed in such terrible circumstances. Then we became one of those ‘poor families’. Our lovely and lively young daughter, Hope, was diagnosed with a rare and difficult-to-cure cancer just after her second birthday. Our family life changed in a flash and we were thrown into a new world that we did not ask to be part of, that no parent should ever know of.
Time passed and we eventually found our feet amongst the confusion of worries, intense treatment and new faces. We coped. And then, two years later and just a few short months after finishing treatment, Hope’s cancer relapsed and we were once again thrown into that murky place of despair. For our daughter, a relapse means her cancer cannot be cured and she is now in palliative treatment, treading a careful balance between length and quality of life.
I am the mother of a child with terminal cancer. People sometimes tell us they don’t know how we manage, and I have nothing to respond with except to say that when things are going well, we just live. We try not to think too far into the future and we spend time enjoying our children. But there are other times when all we can do is simply get through the next few minutes, the next hour, the next day. We don’t ‘manage’ at all.
It is in these times that we feel most blessed to have the love and support of a great group of family and friends. In our most intense moments, their help has meant we have been able to step away from most of the detail of day-to-day life and focus on and simply be with our children and each other. We are so grateful for their care.
While every family’s journey with childhood cancer is different, I can say that for us the most helpful support has been where the pressures of daily life have been taken away. We have friends who coordinated a meal roster, and dinners (often complete with salads or veggies on the side and dessert!) just turned up where ever we needed it. For a while it was seven days a week, and as we started being able to manage it dropped off at our request.
Another lifesaver was when trusted friends offered to spend time with Hope and her brother, giving us a few precious hours to run errands, clean the house or just rest. Gifts of money have also been incredibly useful as our income has been compromised over a long period of time. We have used this money not only for everyday expenses but also for special memory-making activities.
We have been blessed with so many other gifts: a loan of a car, accommodation for us and visitors, holidays and other fun activities, vouchers for groceries and petrol, gifts for our children at hospital and home, gifts for us to help relieve our own boredom at hospital. Siblings often get overlooked in our situation and gifts feel extra special when Hope’s younger brother is included.
If you are looking for ways to support a family in difficult circumstances, know that gifts are usually received in the spirit that they are given. Sometimes we are too overwhelmed with life to respond straight away, sometimes we never get to say thank you to people personally, but we are always grateful for even the most simple gesture. Messages of support, emails and cards, prayers and thoughts recorded on a Facebook page, simply making space in your life to provide a listening ear … The list is as endless as your imagination!
Finally, please don’t be offended if an offer isn’t taken up. It can be scary to leave your ill child in the hands of someone else, even for half an hour; it can be hard to let go of the illusion that we are ‘managing’ and let a friend clean our house or do our washing; we may not always want to ‘open up’ and talk about how we feel. Please be gentle with us and keep your offers open. We are grateful.
Carrie here: And thank you, dear friend. I am grateful you shared your wisdom here with my readers; a kind of wisdom no parent should have but that should be talked about.
Many blessings,
Carrie
The Parenting Passageway 
Dear Carrie and Friends,
This is a difficult and heartwrenching subject. I myself underwent two major surgeries, extensive hospitalitzation and several near death experiences as a very young child from birth to age 8. I know the terror of the hospital and all that goes with it. I have very clear and conscious memories of so much of it.
For many years, I felt rather sorry for myself for these early difficult experiences. The long periods of isolation and the restrictions on physical activity threw me into a very different path than that of my contemporaries. My younger siblings didn’t arrive until I was 7 and my father was away with the Navy and with the corporate work world of the 60s. I was left alone with an alcoholic and emotionally abusive mother. It was only in my 21st year that I was helped to understand that I chose this experience and that it is Christ who gives us our disease, not the “devil”. Christ is the Master of Karma and we work with this destiny to get to our real purposes in life.
For some, who believe in a single lifetime, perhaps the struggle is one’s journey to Heaven. For those of us who work with the idea of reincarnation, there may be a bit more complex meaning to the tapestry of this life as it weaves toward the next.
Here is a link to a story I wrote specifically for a little girl about to go in for surgery. It wasn’t for cancer and she made a full recovery. But perhaps it will be of value in relation to the ordeal of the procedures a child must endure.
For those with children whose illness is diagnosed as “terminal” I have to say from my heart – do not give up hope. But trust the Higher Being that is incarnated as your child. Re-read the Birthday stories and try to trace the way back “home” together. Rudolf Steiner was very clear about the difference between the death of an older person and that of a child. There is a natural and appropriate grief for both the parents and child because of their separation. Still, if one is able in any way to really experience that death is an illusion and that only the physical is “gone”, one can build a “Bridge Over The River” that will help facilitate connection and communication across the Threshold of the Spiritual World.
With sincere love and heartfelt wishes for peace and comfort,
Christine Natale
The Brave Little Princess
Click to access 98386685_The_Brave%20Little%20Princess.pdf
A Child Dies
Some say that childhood is golden,
As it well may be
But I have seen the gold well hidden
And racked by infant pain unbidden
Through ghostly terrors in the night
Which only infant eyes could see.
What happens when a world of darkness
Encroaches on the angel’s land
And drives away the sun of morning
Without a signal or a warning
(With only symbols lost to sight)
Destroys the child in its hand?
This world is full of dying children
Who feel the weight of fear
Yet who, with courage uncomplaining
Turn with faces free of blaming
Only asking for the right
To speak to life with infant voices clear,
And whisper to the world a message
Recorded in the stars
That all a lifetime’s broken promise
All the undeveloped eagerness
Will find its way back to a world made bright
When human hate this world no longer mars.
And when at last the torture passes
And peace is found in death
Those whose weakened hearts are breaking
By the child will be brought to waking
When slow and dim their eyes see Heaven’s light
And from the other side they draw a golden breath.
Christine Natale
Cosmic Journey
Anjali’s Music – Especially for Children
http://www.shantianjali.com/store/music-for-children/
Michael Riversong – Biblical Bard healing music
Michael provides many of his CDs for free if they are needed for healing work
http://www.riversong.biblicalbards.org/cat05.html
Lullabies and Night Songs
Click to access 56147028_Lullabies_and%20Night%20Songs.pdf
Religion in Waldorf Education
Click to access 20774441_Religion_in%20Waldorf%20Education.pdf
The Passing of the Soul – 1
Click to access 48388876_Passing_of%20the%20Soul%201.pdf
The Passing of the Soul – 2
Click to access 59742802_Passing_of%20the%20Soul%202.pdf
The Passing of the Soul – 1
Click to access 14891540_Passing_of%20the%20Soul%203.pdf
The Passing of the Soul – Rudolf Steiner Verses
Click to access 50825910_Rudolf_Steiner%20Verses.pdf
Anjali’s “Reverent Mother” video – so beautiful and healing!
http://www.shantianjali.com/healthy-living-fundraiser/
If you like Anjali’s music, especially The Fairy’s Flower, you can get a copy by making a contribution to this wonderful work for women and children!
To Walk on Water
I want to learn, in time, to walk on water.
My faith, constantly being put to the test
Fails me most often, tossed on the waves
Of our reasonable and unholy age.
It is not true that we are never given
More than our souls can grasp
Or rise above. We often sink beneath
The thunderous waves of unforeseen misfortunes.
The broken masts wash ashore each day
And wreckage is a common sight along
These beaches; yet in the silence of grey
Morning fog, I stalwartly lift my sail again.
I cannot swim well, and fear the creatures
Of the deep, unknown and hideous companions
Who are with me always, even unto the end of time,
And for whom I am responsible.
White mountains on a farther shore are calling me.
The day is clear but windy, cold and rough.
I’ll try again to reach the distant courses
Where hope and faith fail not in winter’s measures.
For thought I sink and break upon the waters-
Denied the saving angel’s last minute solace;
Life has not yet overturned for me the truth
That someday we shall learn to walk on water.
Christine Natale
Thank you for this post. I have always found it such a challenge to know what to do for people in these challenging times. As I grow older and learn more about what it means to be a parent my confidence grows to offer support and an open heart and mind. Your blog posts ground me and offer time for reflection which I appreciate and from which I grow a little more. Thank you too to your guest poster, kia kaha x
Dear “Hope’s Mama”, thank you for sharing with Carrie’s readers and helping us to feel more confident with extending love to families with a similar path to walk. I will be adding Hope and your family to my immaculate conception novena and St Andrew prayers this advent – and wish I could do more to show you and your family love. Lucy x
How our fmaily completely understands what your guest is going through. Saddly, our son was born with neuroblastoma and had a tumour removed from his chest when he was 6 weeks old. His 4 year old sister (who had never spent a night away from her Mama) was thrown into being cared and loved by immediate family each night and Daddy returning from the hospital each night for sleeptime. Somehow we too found our feet. By the grace of God, we now have a new normal of continual MRIs and doctor visits – more importantly, we have our little boy (to be 3 next week) and his big sister together as a family.
Oh Janet,
Thank you for sharing your story, and Oh! to your little boy and his sweet, strong sister – love.
Love to you this holiday season, many, many blessings and Joy.
Carrie
Carrie, thank you to you (and to your friend) for sharing this. Educational and humbling advice. A close friend of mine has recently lost her mother to a shockingly brief struggle with cancer, and sometimes I have been unsure of the best way to help and support my friend. It’s a good reminder to just keep reaching out, even in small ways, to let people know they are remembered and thought of in difficult times.
Thank you. This article hits very close to home for me at this time.
Thank you so much for this post! As someone who battled breast cancer and who is friends with a mother who has a daughter in the midst of her own battle with neuroblastoma, this is such an important topic! Thanks for your spot on guidance and being open. Please know that I’m sending your daughter and your family prayers for strength, healing, laughter, and anything else you may need!