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Reflections on Death- End-of-Life Stories

I wake in the morning and the first thing that hits me is sadness. All I hear is silence. Not a delightful silence, but the deafening kind. Since Baby John died I have been struck by how quiet it is without him. This tiny boy, who hardly made any noise so filled the house with life; and without his little babbles, oh how quiet it is without him. Sadness, and quiet. Yet in the sadness I am grateful for the time spent with him. I am grateful to have been his mother, to have been the one to hold him, so give him life and nurture him. Of my three babies with ARC syndrome John was the only one to did in a hospice. Michael died in hospital. His death felt brutal and so sudden. He passed away after contracting pneumonia, it was quick. We had thought he was doing well the days leading up to it, he had gained weight- he’d reached 3kg, for the first time since he was days old. This was a mile-stone for me, I had been hopeful. Then he was gone. Lucy died at home. We knew she was nearing her end. He body was slowly giving up. We spent a week with her at home. We did life around her that week. I was grateful that we could, that we could all surround her in love. That we could all say “good-bye”. But being at home with her, and her siblings also meant doing all the other “stuff” of life- cooking, laundry, messes, child-care, nipping to the shops…. Then there was her final hours- the administration of “end-of-life” drugs, this stuff is serious, we were on our own. It turns out that the dosing of these drugs in infants in not fully known. You are administering drugs which have not went through full clinical trials in those circumstances, on such little babies. The evidence is gathered on a case by case basis. It felt that there was a lot of subjectivity. She deteriorated over-night, and in that situation you don’t want to be dealing with out-of-hours GPs. The stress, and fear in that situation is horrendous. Our palliative care nurse was wonderful, she guided us through, and calmed our fears, I will forever be indebted to her, but she couldn’t be with us 24/7. John died in Rachel House Children’s Hospice. We knew he was reaching the end. His body began to give up like Lucy’s. The tale-tale sign of requiring morphine regularly for a non-specific problem, when only morphine can stop...

A Legacy for Lucy

I met with John’s palliative care nurse today. Katrina is lovely. She is the type of person you meet and instantly you know she is doing what she is meant to be doing. Palliative care is not going to be the type of job a little girl grows up dreaming of becoming, and it is not the type of nursing job that every nurse will be able to fulfil (in fact there is many a nurse who I’ve met who shouldn’t be allowed anywhere near the palliative setting), but Katrina has definitely found her call. I will be eternally grateful to her for her care of Lucy and of John. John is seven months now, seven months old for a little boy with a life expectancy of six. Lucy would have been 2 years old. As Katrina and I sat drinking tea discussing the changes in palliative care since Lucy passed away she shared with me the things she has learnt and implemented, the differences in the service they can provide. She shared the impact that Lucy had had upon her, that nursing Lucy and supporting us has lead to changing the way palliative care is being done now. Equipment has been purchased to be used with other families because it would have been of benefit to Lucy had they had it. I felt deeply touched that Lucy’s life is helping other babies and other families. In her own little way she has a silent legacy. I was also privileged to be able to share some of Michael, Lucy and John’s stories, for her to use in training health care professionals around palliative issues. I can do many different memory making “things” with John; but to think his story, their stories, are able to help other families, and are being told, is a legacy I want my babies to have. Share this:PrintFacebookTwitterEmailLike this:Like...

The Power of Home to Heal

After eight nights in hospital with my precious little boy it is good to be home, it is good to be in my own bed, away from the noise and busyness of the hospital. But more than that being home brings healing. We have spent a lot of time these last two years in hospital: first with Lucy, now with John. The stress of the environment, being surrounded by the suffering of so many children and families; and the worry and pain of your own circumstances means you leave hospital bruised and battered emotionally- this last admission I met a family about to take their child to a hospice because the doctors can do no more, a little girl left permanently brain damaged from the treatment for her brain tumour, and a family who can spend 50% of their time in hospital with their son with cystic fibrosis, and there was us with our third terminally ill child; life is just plain unfair sometimes I left wanting to curl up and hide from the cruel world which sees families battle through the deepest of pain. Home is a place to be healed, and it was not just for me. As soon as my little six month old terminally ill, deaf, developmentally delayed baby came home he smiled, he made big happy noises, he looked around at everyone and everything familiar. He was home, he was happy and content, surrounded by all his people. This beautiful and powerful experience of coming home made me cry. This precious boy knows home, and loves home. And it was not only John who received the blessing of being home. For me back surrounded by the children, Mr Man, the mess, the chaos; but also the peace and sanctuary that I find at home my soul could exhale. My sad heart could heal. Home is the people who live there, it is also the bricks and mortar which create a fortress against the harshness of the outside world. It is where life is lived in all it’s messy glorious, honesty. Our home is not interest worthy, it is definitely no show home, it is jam packed full of life and it’s messy, it needs painted, expanded, de-cluttered, re-organised, constantly tidied; but it is home to us. And it is safe. It is a place where we can come to be healed- that is the power of home. How sad not to know home as a safe place, a place to be loved and accepted, to be nurtured. How many children turn into broken and...

The Blessing of “Normal” When Life is Hard...

Advent means starting our day reading Ann Voskamp’s book “Unwrapping the Greatest Gift” in it we were encouraged to think of a family going through a really hard time, a family needing encouragement. They couldn’t think of one. I could think of a couple of families, but they are not on the children’s radar. But I think a survey of the people in our circle of acquaintances would place us at the top of the Family-In-Need-of-Encouragement list. We have our second terminally ill child in as many years, life is sad. Yet they don’t see themselves in a place of need. This made me smile, but also made me think how we’ve managed to do this. I think one of the reasons is we try to keep things “normal”. We keep on with life. I love the verse in Thessalonians 4:11 ” aspire to lead a quiet life”. There is so much wisdom in this simple verse. The quiet, simplicity, of doing normal life, with it’s regular rhythms brings a reassurance to the lives of children and adults. I also think one of the reasons the children do not see themselves as suffering is that we try not to wallow in self-pity, or surround them with voices that tell them things are hard. Of course there are sad times, and stressful times but that is not the prevailing spirit in the home. And this brings nicely to the final point I think is important when life is tough- to laugh. We are silly together. We do silly things. There is a lot of laughter in our home. A merry heart doeth good like a medicine: but a broken spirit drieth the bones. Proverbs 17:22 We have to find a way of laughing, it provides a protection against despair. Share this:PrintFacebookTwitterEmailLike this:Like...

These Autumn Days

Walking through the autumn woods, the glorious blaze of colour and the air filled with autumnal smells, no wonder L.M. Montgomery wrote in Anne of Green Gables “I’m so glad I live in a world where there are Octobers.” But Autumn is bitter-sweet, this audacious display of beauty is a display of death. The leaves are dying, and the beautiful days of autumn will soon give way to the icy chill of winter. In many ways my days are like autumn, as I hold my beautiful baby John who brings so much joy into our lives, his days on this earth will be short. Being with him is a sheer delight, but the time will come when it will be like winter to my soul and he will leave us. But in this time, as nature fills the season before winter with glory and beauty, so I want to fill my sons life with wonder. I want his short life to be one of joy, so when he looks down from heaven he can be glad to have lived out his days with us. I want him to experience the autumn air, the feel of the sun on his face, and to be surrounded by love. I want his siblings to treasure up these months with memories of their brother, so they can always carry him in their hearts. So that when the season changes we hope and pray we will be ready for it, that we can endure it. We trust in God’s goodness and love, that he who controls the seasons in our life will bring the Spring once more. Share this:PrintFacebookTwitterEmailLike this:Like...

Our Sunshine List aka Bucket List!

It is quite common to put together a Summer Bucket List, however we have done something a little bit different this year. The end of the summer holiday’s will bring a new baby into the family, a new baby who will be very sick like little Lucy. Knowing this, is making us intentional about filling the children’s lives with enjoyable experiences before the baby is born. Therefore we have made up a Sunshine List- a list of things which are meant to be rays of sunshine for us as we prepare yourselves for a difficult road ahead. Each child could choose two things they wanted to do, with the stipulation they had to be sensible, and doable!   Some of the things that have made the list are: a loch-side walk and paddle with a picnic a bike ride swimming hillwalking (although approaching nine months pregnant this may not happen, although it may help put me into labour!) building a camp fire Studies have consistently shown that enjoyable experiences are more enriching than expensive gifts. And a recent study has shown that children find more pleasure in simple activities, and not necessarily the eye-wateringly expensive outings, like, theme parks, or even the zoo. Last summer one of their highlights was building a camp fire in the wood, and toasting marshmallows with friends- unsurprisingly this has made the list this year too. I believe one of the things that helped the children cope last year with the death of their sister was special families times away like the building of camp fires, and going hillwalking; I don’t think it surprising that many of these activities that we found so helping involved nature. So the next few weeks we will be intentionally filling them up with memories of summer adventures, and little treats. And to be honest these family times will not only bless the children, but will fill me up with happy memories to carry me through the hospital stays and the sad times. Share this:PrintFacebookTwitterEmailLike this:Like...
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