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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...

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...

Perinatal Care: Pregnancy with a Terminally Ill Child...

When I was carrying little Lucy I did not know of her diagnosis. I clung onto hope that she would be a healthy child. But one of the marks of that pregnancy- more than any of my other pregnancies- was the bond I felt with her throughout the pregnancy. During those 9 months I experienced some wonderful times- important to me personally, but the sense that she too was experiencing them with me was profound. I “took” her hill climbing, to the ballet, on holiday…. and although she was in the womb, I felt she had experienced these moments with me. I felt she experienced the wonder of Swan Lake, and the beauty of the Isle of Skye- that she lived them through me, and in me. Since then I have discovered the concept of perinatal hospice. The idea that the womb is a hospice for the terminally ill baby. And you intentionally create memories with the unborn child- doing things with the child, that the child will never live to experience themselves. Intentional care and support through the prenatal period in which parents know their baby will not live long, has been shown to greatly help the healing process, and reduce the number of women who terminate such pregnancies- studies have shown an increase from 20% to 75% continuing such pregnancies to term. Although this concept was unknown to me, and Lucy’s diagnosis not known until the end of the pregnancy; the experience of her pregnancy was one of God’s grace. No matter how short a life is- every life counts. Share this:PrintFacebookTwitterEmailLike this:Like...

Homeschooling Through Crisis

When homeschooling we are in it for the long haul. For many families it will be a journey that will last years. Therefore it is reasonable to assume that in that time we will face difficult situations, seasons of crisis. This has been such a year for us. A year ago I was heavily pregnant and about to discover my sweet baby girl was suffering from ARC syndrome. I knew that the following months would be tough. ARC has an average life expectancy of 6 months, with very few baby’s living past 12 months. Our first son died of it, I knew a little of what to expect. However, I was not quite prepared for the long periods of hospital admissions which lay before us- in Lucy’s short life around half of it was spent in hospital fighting different illnesses. Trying to keep on top of homeschooling in such circumstances is stressful. My husband had to step into the breach- we are not one of those families who share the educational responsibilities, it’s just not how we do things. One big bonus in this was the change in style helped the Jedi Boy to move forward. I also freed myself from focusing on curriculum so rigidly. When I was away I set tasks which were less text book based, and more interest based, for example I set as a creative writing exercise for the Jedi Boy, to write a Star Wars themed story, he loved it, I had not seen him so excited about writing before, he was so excited he continued this story for a whole week! I also found that despite the lack of set curriculum the children progressed- and progressed well, academically. When facing a crisis I would recommend, keep it simple- focus on what you have to. The children also have memories with their sister which are priceless. It was 6 months where life was raw and challenging- for us all. But by keeping the children close to us, as a family we have carried each other through. It was suggested I put the children in school through this time. I decided against this for us, as I felt it would cause more upset, at a time where continuity was vital. It would also add the pressure of school runs into a dynamic where things were ever changing- a season where I didn’t know where I would be from one day to the next. And as I said being at home together, gave us all that time as a family, which was all to short...

Living with the Shadow of Arc Syndrome

Ten years ago we buried our first child. A son, he was three and half months old when he died, yet he weighed less than when he was first born. He suffered from Arc Syndrome, a rare genetic disorder. In the following 10 years we have cheated the odds and won, but now we again face the agony of the disease. Arc Syndrome (arthrogryposis, renal tubular acidosis, and cholestasis) is so rare there are only a handful of cases each year in the UK. It is a metabolic disorder: affecting the kidneys, the liver and central nervous system. The arthrogryposis is the only really visible part of the disorder- resulting in contractors on some or all the limbs, basically the baby cannot straighten their legs or arms, in some cases. The renal tubular part results in “leaky” kidneys- the baby will lose much needed nutrients out their kidneys and will be prone to dehydration. The cholestasis causes poor liver function, this makes it hard to the body to absorb fats, and causes jaundice. Other affects can be deafness; abnormal platelets, resulting in a tendency to bleed; poor immunity; and dry itchy skin. For parents facing the condition information is painfully limited, due to the rarity of the disease. Doctors face treating an illness about which little is known. In writing this I hope to share some of the things which have helped us: Milk- I believe in the benefit of breast milk to babies. I express milk and use it in nasal gastric feeding. It is easier for a delicate gut to digest, and provides help with immunity. But have also used caprilon and infatrini peptisorb. Both of these formulas contain high proportions of medium chain fatty acids, which do not depend on liver function for absorption. The infatrini peptisorb is also higher in calories, and contains a higher amount of proteins. Vitamins and Supplements- additional vitamin supplements can help with liver function, and other supplements can help replace what the kidneys lose. For anyone reading this, facing Arc as a diagnosis, our love and prayers go out to you. Share this:PrintFacebookTwitterEmailLike this:Like...
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