Behind The Child
The force is strong strange in these two.
Take one busy, active, intelligent six year old boy who lives, sleeps and breathes Star Wars. Add one determined eight year old girl who has no idea about anything Star Wars related, apart from the fact her friend really really likes it. I should probably rectify that. Maybe.
Anyway, it's not a particularly likely partnership. But somehow it works
Biscuits and cakes get baked and sampled and smeared across the kitchen floor
Neighbours and passersby are perturbed by the appearance of two Jedis; one who doubles as a Ninja without extra pay.
The grass gets crushed into submission, to teach it to grow when the gardener is away.
Miss Mog gets to sit and listen and giggle mightily all day long.
And I have the satisfaction of a small child fast asleep before half past six in the evening.
I'll spare the Ninja Jedi the photos of his stint as hairdresser, good as he is with a very girly purple comb.
And I'll spare the world the sight of the Doctors/Police/Ambulance/Hospital/Dark Side mission which seemed to involve bare toes, many arrests made with the aid of a bandage and a yoyo, and a largish box of pencils.
But a good time was definitely had by all. Friendship. Strange but true.
I'll leave tLP with the last words "Mummy, Mummy, he has left something behind. He really has left something behind, look Mummy, he has left behind ME."
Tia
Anyway, it's not a particularly likely partnership. But somehow it works
Biscuits and cakes get baked and sampled and smeared across the kitchen floor
Neighbours and passersby are perturbed by the appearance of two Jedis; one who doubles as a Ninja without extra pay.
The grass gets crushed into submission, to teach it to grow when the gardener is away.
Miss Mog gets to sit and listen and giggle mightily all day long.
And I have the satisfaction of a small child fast asleep before half past six in the evening.
I'll spare the Ninja Jedi the photos of his stint as hairdresser, good as he is with a very girly purple comb.
And I'll spare the world the sight of the Doctors/Police/Ambulance/Hospital/Dark Side mission which seemed to involve bare toes, many arrests made with the aid of a bandage and a yoyo, and a largish box of pencils.
But a good time was definitely had by all. Friendship. Strange but true.
I'll leave tLP with the last words "Mummy, Mummy, he has left something behind. He really has left something behind, look Mummy, he has left behind ME."
Tia
Mass Observation.
Linky here http://www.massobs.org.uk/12may
The Mass Observation Archives have asked as many people as possible to log May 12th, in detail, for their records. Something which they started doing in 1937, for the Coronation.
I've sent ours in, but I thought perhaps people here might be interested in a whole day rather than just selected episodes from our life. It was a fairly average Sunday for us. So here it is, edited to remove comments on neighbours and bits of other people's stories.
I am 39, and a single adoptive parent to two girls (8 and 10), who have profound disabilities (cerebral palsy and Spina bifida) and complex medical needs (epilepsy, spasms, neuropathic bowel and bladder, central hypoventilation amongst others). M is unable to talk but can indicate yes and no with her tongue, A is very able to talk and has learning disabilities.
We live in a three bedroom ground floor ex-council flat in a nice town in Oxfordshire. We have two cats (a ragdoll and a Norwegian forest) and an assortment of tropical fish.
We live in the town where I grew up, and A attends my old primary school with a lot of support. M attends a local special school My parents live a 10 minute walk away, and we all attend the local church where I was Baptised as a baby, confirmed as a teenager, where my brother was married and where funeral services were held for my grandmother and my oldest daughter.
Woke up at 5.30am, not sure if my ears were ringing or if my daughter M's SATs monitor was alarming (same pitch). She was awake and smiling, so I gave her her morning meds (Tizanidine, Glycopyronium Bromide, Clobazam, Vigabatrin and Carbemazepine), adjusted her CPAP mask to stop an air leak, and went back to bed.
6.30am M woke me again, this time very very unhappy. Loud cries, lots of spasm, SATs dropping. Released her CPAP mask, vented her gastrostomy, rolled her over and changed her pad.
Still very uncomfortable, gave her a bisacodyl suppository and lifted her onto her special toilet seat. Gave her ibuprofen and paracetamol, still very uncomfortable.
Made her breakfast - baby cereal, fruit smoothie and milk, and pushed it through her gastrostomy tube, together with her Movicol. She went to sleep.
Fed cats (Royal Canin Fur and Skin) and fish (Tetra nibbles and Aquarians flakes).
7am, A woke up. Unhooked her from her ventilator, sat her up in bed, and gave her her morning meds (domperidone and oxybutinin). Rubbed her shoulders as she fought against her morning vomit. Helped her remove her overnight catheter from her Mitrofanoff.
Lifted her onto her toilet seat, pushed 490mls water through her caecostomy, Passed her her glasses, tray and iPad, and went to put the kettle on.
Made a large strong mug of coffee, swept up yesterday's mud and beads from the floor, did the washing up, and went to get dressed just as our morning carer arrived.
Put Radio 4 on (morning service), made a second cup of coffee but forgot to drink it. Quick breakfast - salmon and cream cheese sandwich as salmon goes off today. Yum. Found clothes for M - nice loose dress as no result from suppository and no morning wee either. Lifted her back into bed, got her dressed - very very sore still from recent round of antibiotics.
Put M in her wheelchair, found a scarf to bind her right arm to her body (she has recently had Botox injections into her shoulder to try and stop her arm from being stuck angled outward with her hand behind her head; the scarf encourages the botoxed muscles to stretch), put her glasses on, adjusted her hips to try and make her more comfortable.
M very distressed again and more spasm. Still no result from suppository and no wee, but gave her Buccal Buscopan which helped relieve the pain.
Listened to protracted negotiations between A (8) and our morning carer. Carer comes for 1hour15 minutes every morning except Saturday, and helps me to get both girls ready for the day.
Argument this morning about hair brushing, catheterisations, hoisting, bottom wiping, and giving breakfast. No tears and screams, just head slapping, shouts and frustrations. A good(ish) morning.
Carer brushed M's hair, sorted both girls' teeth, reported bleeding mouth*, recorded her visit in book and left. A signed the book for me - first and last name, all spelt right, very neat.
Blankets and cardigans as not very warm today. Then off to church - cats followed us halfway but stopped before the road, thankfully.
Five minute walk to church made longer as A in her powerchair decided to push M in her manual wheelchair.
Dropped A at Godzone (Sunday school), and then into church with M. A good day today, accesswise. Both doors open at the main entrance, so able to walk in straight away, just like everyone else, not wait on the ramp whilst greeters try to work out how to open the second door. I like it when they've thought about the fact we will be coming before we get there; it makes me feel as though we are a full part of the body of Christ, not an awkward addition.
Into church itself, and two men lined up to move seats to make space for M. Lovely. If she's going to choose to come to church rather than Godzone every week then we might need to think about giving her a permanent spot, but for now, this works well. Again, we feel welcome and included - unlike when I have to hover and somehow shift seats myself whilst blocking the aisle with M's chair.
Joined in our row by friends and then my mother too.
A good service. Lots of good songs - Never Let Go, How Great Thou Art, the Lord is Gracious and Compassionate, and a couple more I'd been singing on the way into church before knowing they'd be playing. Hurrah. M sang along to How Great Thou Art, but confined herself to listening and having seizures during the rest of the songs. Tim Davis (Vicar) preaching on Going on being filled with the Holy Spirit. Challenge - to do nothing without first waiting for God to come with us.
Communion made more interesting by the large new stage at the front of church; not much space for wheelchairs to squeeze past. But we managed, with help from friends and vicars and curates and staff, and it wasn't too much of a circus. And friends came up with a better plan for next time, so that's all good. Next challenge will be to make it possible for M to receive communion rather than just a blessing, as she seems to be indicating she might like to. Puréed bread and wine? Or just a small taster? Will have to ponder that, along with thinking about practicalities of Confirmation, if that's what she decides she wants. Am unconvinced of theological necessity, but as we attend an Anglican church, perhaps we should identify as Anglicans as well as Christians. Always Christians first.
Coffee after church with friends; A played outside with her friends, and M stayed with us.
Back home and a round of pad changes and catheters, a quick packet of crisps for A to keep the wolf from the door, a stretch for M, then both girls watched CBeebies on the iPad and I caught up on emails, Facebook, and a special needs forum.
A popped out to play with the cats, and we met our new neighbours-to-be - the flat opposite ours has been empty for three weeks, since the death of its former occupant. Now it looks as though a family who currently live upstairs around the corner will be moving 200 yards down the road and into a ground floor flat. Much more sensible as they have mobility difficulties. They tell me the council is going to transform their front garden into a parking space; very sensible and will definitely help with the parking problems in our cul-de-sac. Won't be for a couple of months though, so I shall believe it when I see it.
Back inside, another catheter for A and then finally Grandad (my father) poked his head around the door, having finished with the second service at church. Coats and blankets on, pudding collected, and we walk around to my parents' house for lunch.
A glass of sherry and some cheese straws, white wine with chicken casserole, carrots, broccoli and scalloped potatoes, and then salted caramel chocolate tart with crême fraîche and bananas. Very delicious.
M had roast beef, apple, carrot, banana, kiwi, caramel sauce, and bread puréed and pushed through her tube; a lick of the chicken casserole and half a teaspoon of the chocolate caramel pie. A good meal for her.
Coffee in the sitting room, and a silly game with clockwork Grannies on Zimmer Frames and Grandads with walking sticks. Snakes and ladders, and then triominos, and finally a pencil and paper for A. Grandad read papers and dozed; Grannie and I entertained the girls and digested dinner.
A diary check, a card written for the newest baby in the family (no name yet), and rough plans drawn up for a special table for A - she is having spinal surgery soon and will need a higher table afterwards.
Then wrapping up as waterproofily as possible, and a quick march home through the rain.
4.30pm and tea for A - sausage roll, cucumber and coleslaw. Girls watch more CBeebies - Postman Pat, Me Too, Chuggington.
I make M's blends - tea tonight and lunch tomorrow. Sausage rolls, marmite cauliflower, milk, orange juice, baked potato and prunes. Bit of a mixed meal but all food groups covered and should help her bowels along. Mixed up meds for next 24 hours, restocked drugs bag and school bag.
5.30pm. A into bath. Hair wash. Matt Redman "Sing Like Never Before" album on very loud. Gave Imi her tea, helped her cough.
6pm. Carer returns, lift M onto bench, hand over so carer can do shower and hair wash as I give A her evening meds (domperidone, oxybutinin, and lanzoprezole), and post her into bed. In dwelling catheter, next chapter of our bedtime book (Allen Ahlberg The Giant Baby), a God story (parable of the seeds), prayers, ventilator, snuggles, wheelchair on charge and goodnight. Phew!
Carer hoists M back into chair, dries and plaits mad hair, then hoists into bed, signing off at 7.15 having hooked up SATs monitor and CPAP, sorted music (Vinesong "Isn't He?") and sorted positioning pillows. We have help in the evenings three evenings a week; this is less useful than it was as both girls are now usually very tired by the time the carer comes (7pm on weekdays) and would rather be in bed already by that time.
Feed cats, separate fighting cats, do the washing up, avoid looking too hard at messy kitchen, debate doing another load of washing, but instead Febreeze the wheelchair covers (which have been washed so often since November that they are nearly falling apart already and have gone baggy) and stack the rest of the washing by the washing machine.
Grab some sewing I'm doing and continue to unpick last night's mistake. Mistake took two minutes to see in, and has so far taken two hours to unpick. Am only halfway there too. Debating point, but I will enjoy using finished item knowing I created it all by myself.
Girls all quiet; I gave M her evening medication (tizanidine, glycopyronium bromide, clobazam, Vigabatrin, sodium docusate, carbemazepine, epilim), kisses and prayers and a goodnight snuggle.
Did another two hours unpicking and now have just one inch left. Have had to stop as elbow and wrist cramping. Watched a BBC programme on hoarders and resolved to do something about piles of clutter in my bedroom. Probably won't, though. Debated grabbing more of the chocolate tart (Mum having kindly sent it home with us), but settled for a packet of crisps and a glass of wine instead. Not terribly healthy, but nicely portable, minimal effort required, and minimal mess made.
Now 9.20pm, I have done a final round - all breathing machines working correctly, all emergency medication within easy reach, cats asleep on armchairs, girls asleep in bed, washing still drying on the racks.
A quick diary check reveals a quiet week ahead; no hospital appointments, no school appointments, just meeting a friend for coffee and meeting more friends for lunch. Will wait to see what the week actually brings. It is rare for M to remain well all week; she usually needs a day off somewhere to rest from the demands of school.
Clothes more or less sorted for the morning (identified anyway), it is now 21.50, I am in bed, and about to do my last nighttime bits and pieces (Internet, bible study which didn't get done this morning, set alarms) before settling down for the night.
*M has a loose tooth which catches on her lip. Dentist will pull it (not falling out as anticonvulsants have caused gums to grow too much) but wants to wait six months. I understand her concerns over unnecessary interventions, but why should my daughter be left in pain for that long?
Reflections on the day.
Today was a pretty average Sunday. Whilst I might have a glass of wine in the evening on a different day, I don't ordinarily drink with lunch except on a Sunday.
Today M only used three incontinence pads. This is good as we are only allowed four per day, so I now have one in hand for days when she is unwell and gets through more than her ration. But it is also bad, because it means she held her urine too long, and then flooded through, making more washing for me to do.
Today M did need painkillers, but did not need oral diazepam for muscle spasms or rectal diazepam for seizures. Her seizure activity was pretty minimal; a few episodes of bigger seizure activity rather than the hour long runs she had on Saturday and Friday.
M did not require suction, a nebuliser or supplemental oxygen today.
A only threw one item and hit no one. She did scream, cry, hit herself and throw some impressive tantrums, but managed to keep a bit of self control. She did complain of back ache, but refused painkillers.
I lifted A (25kg) 11 times, hoisted her 1ce, and carer hoisted her twice.
I lifted M (30kg) 6 times, and our carer hoisted her twice.
Unfortunately, M's sling was wet, and she cannot sit on her spare sling all day. So I could have avoided three of her lifts, but the others were unavoidable. I could have hoisted A this morning, skipping one lift, and twice more this evening. Her other lifts were at my parents' house though, where hoisting is not a possibility.
My back aches!
Tia.
“I donate my 12th May diary to the Mass Observation Archive. I consent to it being made publicly available as part of the Archive and assign my copyright in the diary to the Mass Observation Archive Trustees so that it can be reproduced in full or in part on websites, in publications and in broadcasts as approved by the Trustees
The Mass Observation Archives have asked as many people as possible to log May 12th, in detail, for their records. Something which they started doing in 1937, for the Coronation.
I've sent ours in, but I thought perhaps people here might be interested in a whole day rather than just selected episodes from our life. It was a fairly average Sunday for us. So here it is, edited to remove comments on neighbours and bits of other people's stories.
I am 39, and a single adoptive parent to two girls (8 and 10), who have profound disabilities (cerebral palsy and Spina bifida) and complex medical needs (epilepsy, spasms, neuropathic bowel and bladder, central hypoventilation amongst others). M is unable to talk but can indicate yes and no with her tongue, A is very able to talk and has learning disabilities.
We live in a three bedroom ground floor ex-council flat in a nice town in Oxfordshire. We have two cats (a ragdoll and a Norwegian forest) and an assortment of tropical fish.
We live in the town where I grew up, and A attends my old primary school with a lot of support. M attends a local special school My parents live a 10 minute walk away, and we all attend the local church where I was Baptised as a baby, confirmed as a teenager, where my brother was married and where funeral services were held for my grandmother and my oldest daughter.
Woke up at 5.30am, not sure if my ears were ringing or if my daughter M's SATs monitor was alarming (same pitch). She was awake and smiling, so I gave her her morning meds (Tizanidine, Glycopyronium Bromide, Clobazam, Vigabatrin and Carbemazepine), adjusted her CPAP mask to stop an air leak, and went back to bed.
6.30am M woke me again, this time very very unhappy. Loud cries, lots of spasm, SATs dropping. Released her CPAP mask, vented her gastrostomy, rolled her over and changed her pad.
Still very uncomfortable, gave her a bisacodyl suppository and lifted her onto her special toilet seat. Gave her ibuprofen and paracetamol, still very uncomfortable.
Made her breakfast - baby cereal, fruit smoothie and milk, and pushed it through her gastrostomy tube, together with her Movicol. She went to sleep.
Fed cats (Royal Canin Fur and Skin) and fish (Tetra nibbles and Aquarians flakes).
7am, A woke up. Unhooked her from her ventilator, sat her up in bed, and gave her her morning meds (domperidone and oxybutinin). Rubbed her shoulders as she fought against her morning vomit. Helped her remove her overnight catheter from her Mitrofanoff.
Lifted her onto her toilet seat, pushed 490mls water through her caecostomy, Passed her her glasses, tray and iPad, and went to put the kettle on.
Made a large strong mug of coffee, swept up yesterday's mud and beads from the floor, did the washing up, and went to get dressed just as our morning carer arrived.
Put Radio 4 on (morning service), made a second cup of coffee but forgot to drink it. Quick breakfast - salmon and cream cheese sandwich as salmon goes off today. Yum. Found clothes for M - nice loose dress as no result from suppository and no morning wee either. Lifted her back into bed, got her dressed - very very sore still from recent round of antibiotics.
Put M in her wheelchair, found a scarf to bind her right arm to her body (she has recently had Botox injections into her shoulder to try and stop her arm from being stuck angled outward with her hand behind her head; the scarf encourages the botoxed muscles to stretch), put her glasses on, adjusted her hips to try and make her more comfortable.
M very distressed again and more spasm. Still no result from suppository and no wee, but gave her Buccal Buscopan which helped relieve the pain.
Listened to protracted negotiations between A (8) and our morning carer. Carer comes for 1hour15 minutes every morning except Saturday, and helps me to get both girls ready for the day.
Argument this morning about hair brushing, catheterisations, hoisting, bottom wiping, and giving breakfast. No tears and screams, just head slapping, shouts and frustrations. A good(ish) morning.
Carer brushed M's hair, sorted both girls' teeth, reported bleeding mouth*, recorded her visit in book and left. A signed the book for me - first and last name, all spelt right, very neat.
Blankets and cardigans as not very warm today. Then off to church - cats followed us halfway but stopped before the road, thankfully.
Five minute walk to church made longer as A in her powerchair decided to push M in her manual wheelchair.
Dropped A at Godzone (Sunday school), and then into church with M. A good day today, accesswise. Both doors open at the main entrance, so able to walk in straight away, just like everyone else, not wait on the ramp whilst greeters try to work out how to open the second door. I like it when they've thought about the fact we will be coming before we get there; it makes me feel as though we are a full part of the body of Christ, not an awkward addition.
Into church itself, and two men lined up to move seats to make space for M. Lovely. If she's going to choose to come to church rather than Godzone every week then we might need to think about giving her a permanent spot, but for now, this works well. Again, we feel welcome and included - unlike when I have to hover and somehow shift seats myself whilst blocking the aisle with M's chair.
Joined in our row by friends and then my mother too.
A good service. Lots of good songs - Never Let Go, How Great Thou Art, the Lord is Gracious and Compassionate, and a couple more I'd been singing on the way into church before knowing they'd be playing. Hurrah. M sang along to How Great Thou Art, but confined herself to listening and having seizures during the rest of the songs. Tim Davis (Vicar) preaching on Going on being filled with the Holy Spirit. Challenge - to do nothing without first waiting for God to come with us.
Communion made more interesting by the large new stage at the front of church; not much space for wheelchairs to squeeze past. But we managed, with help from friends and vicars and curates and staff, and it wasn't too much of a circus. And friends came up with a better plan for next time, so that's all good. Next challenge will be to make it possible for M to receive communion rather than just a blessing, as she seems to be indicating she might like to. Puréed bread and wine? Or just a small taster? Will have to ponder that, along with thinking about practicalities of Confirmation, if that's what she decides she wants. Am unconvinced of theological necessity, but as we attend an Anglican church, perhaps we should identify as Anglicans as well as Christians. Always Christians first.
Coffee after church with friends; A played outside with her friends, and M stayed with us.
Back home and a round of pad changes and catheters, a quick packet of crisps for A to keep the wolf from the door, a stretch for M, then both girls watched CBeebies on the iPad and I caught up on emails, Facebook, and a special needs forum.
A popped out to play with the cats, and we met our new neighbours-to-be - the flat opposite ours has been empty for three weeks, since the death of its former occupant. Now it looks as though a family who currently live upstairs around the corner will be moving 200 yards down the road and into a ground floor flat. Much more sensible as they have mobility difficulties. They tell me the council is going to transform their front garden into a parking space; very sensible and will definitely help with the parking problems in our cul-de-sac. Won't be for a couple of months though, so I shall believe it when I see it.
Back inside, another catheter for A and then finally Grandad (my father) poked his head around the door, having finished with the second service at church. Coats and blankets on, pudding collected, and we walk around to my parents' house for lunch.
A glass of sherry and some cheese straws, white wine with chicken casserole, carrots, broccoli and scalloped potatoes, and then salted caramel chocolate tart with crême fraîche and bananas. Very delicious.
M had roast beef, apple, carrot, banana, kiwi, caramel sauce, and bread puréed and pushed through her tube; a lick of the chicken casserole and half a teaspoon of the chocolate caramel pie. A good meal for her.
Coffee in the sitting room, and a silly game with clockwork Grannies on Zimmer Frames and Grandads with walking sticks. Snakes and ladders, and then triominos, and finally a pencil and paper for A. Grandad read papers and dozed; Grannie and I entertained the girls and digested dinner.
A diary check, a card written for the newest baby in the family (no name yet), and rough plans drawn up for a special table for A - she is having spinal surgery soon and will need a higher table afterwards.
Then wrapping up as waterproofily as possible, and a quick march home through the rain.
4.30pm and tea for A - sausage roll, cucumber and coleslaw. Girls watch more CBeebies - Postman Pat, Me Too, Chuggington.
I make M's blends - tea tonight and lunch tomorrow. Sausage rolls, marmite cauliflower, milk, orange juice, baked potato and prunes. Bit of a mixed meal but all food groups covered and should help her bowels along. Mixed up meds for next 24 hours, restocked drugs bag and school bag.
5.30pm. A into bath. Hair wash. Matt Redman "Sing Like Never Before" album on very loud. Gave Imi her tea, helped her cough.
6pm. Carer returns, lift M onto bench, hand over so carer can do shower and hair wash as I give A her evening meds (domperidone, oxybutinin, and lanzoprezole), and post her into bed. In dwelling catheter, next chapter of our bedtime book (Allen Ahlberg The Giant Baby), a God story (parable of the seeds), prayers, ventilator, snuggles, wheelchair on charge and goodnight. Phew!
Carer hoists M back into chair, dries and plaits mad hair, then hoists into bed, signing off at 7.15 having hooked up SATs monitor and CPAP, sorted music (Vinesong "Isn't He?") and sorted positioning pillows. We have help in the evenings three evenings a week; this is less useful than it was as both girls are now usually very tired by the time the carer comes (7pm on weekdays) and would rather be in bed already by that time.
Feed cats, separate fighting cats, do the washing up, avoid looking too hard at messy kitchen, debate doing another load of washing, but instead Febreeze the wheelchair covers (which have been washed so often since November that they are nearly falling apart already and have gone baggy) and stack the rest of the washing by the washing machine.
Grab some sewing I'm doing and continue to unpick last night's mistake. Mistake took two minutes to see in, and has so far taken two hours to unpick. Am only halfway there too. Debating point, but I will enjoy using finished item knowing I created it all by myself.
Girls all quiet; I gave M her evening medication (tizanidine, glycopyronium bromide, clobazam, Vigabatrin, sodium docusate, carbemazepine, epilim), kisses and prayers and a goodnight snuggle.
Did another two hours unpicking and now have just one inch left. Have had to stop as elbow and wrist cramping. Watched a BBC programme on hoarders and resolved to do something about piles of clutter in my bedroom. Probably won't, though. Debated grabbing more of the chocolate tart (Mum having kindly sent it home with us), but settled for a packet of crisps and a glass of wine instead. Not terribly healthy, but nicely portable, minimal effort required, and minimal mess made.
Now 9.20pm, I have done a final round - all breathing machines working correctly, all emergency medication within easy reach, cats asleep on armchairs, girls asleep in bed, washing still drying on the racks.
A quick diary check reveals a quiet week ahead; no hospital appointments, no school appointments, just meeting a friend for coffee and meeting more friends for lunch. Will wait to see what the week actually brings. It is rare for M to remain well all week; she usually needs a day off somewhere to rest from the demands of school.
Clothes more or less sorted for the morning (identified anyway), it is now 21.50, I am in bed, and about to do my last nighttime bits and pieces (Internet, bible study which didn't get done this morning, set alarms) before settling down for the night.
*M has a loose tooth which catches on her lip. Dentist will pull it (not falling out as anticonvulsants have caused gums to grow too much) but wants to wait six months. I understand her concerns over unnecessary interventions, but why should my daughter be left in pain for that long?
Reflections on the day.
Today was a pretty average Sunday. Whilst I might have a glass of wine in the evening on a different day, I don't ordinarily drink with lunch except on a Sunday.
Today M only used three incontinence pads. This is good as we are only allowed four per day, so I now have one in hand for days when she is unwell and gets through more than her ration. But it is also bad, because it means she held her urine too long, and then flooded through, making more washing for me to do.
Today M did need painkillers, but did not need oral diazepam for muscle spasms or rectal diazepam for seizures. Her seizure activity was pretty minimal; a few episodes of bigger seizure activity rather than the hour long runs she had on Saturday and Friday.
M did not require suction, a nebuliser or supplemental oxygen today.
A only threw one item and hit no one. She did scream, cry, hit herself and throw some impressive tantrums, but managed to keep a bit of self control. She did complain of back ache, but refused painkillers.
I lifted A (25kg) 11 times, hoisted her 1ce, and carer hoisted her twice.
I lifted M (30kg) 6 times, and our carer hoisted her twice.
Unfortunately, M's sling was wet, and she cannot sit on her spare sling all day. So I could have avoided three of her lifts, but the others were unavoidable. I could have hoisted A this morning, skipping one lift, and twice more this evening. Her other lifts were at my parents' house though, where hoisting is not a possibility.
My back aches!
Tia.
“I donate my 12th May diary to the Mass Observation Archive. I consent to it being made publicly available as part of the Archive and assign my copyright in the diary to the Mass Observation Archive Trustees so that it can be reproduced in full or in part on websites, in publications and in broadcasts as approved by the Trustees
A bitty kind of day
A lovely peaceful quiet couple of hours this morning, both girls managing a lie in until eight o'clock. Coffee and calm cats and a hibernating house.
And then a dead bird (no photo. Be thankful). And then a live bird with broken legs. Shut Benjamin into the shower room, took noisy struggling bird outside, dropped him into a quiet corner of the hedge - into Grolly's jaws. Oops. Scooped up Grolly, shut her into the house; she leapt through my legs, grabbed the bird and disappeared into unreachable shrubbery. Released Benjamin on the theory two cats might despatch bird faster than one. Sigh.
Girls waking, I managed to send Mog's breakfast (weetabix and vegetable juice) all over her new rug and up the wall. A blood bath echoing the one taking place outside. Oops. Later, I will repeat this feat with her lunch (spaghetti bolognese), before deciding to switch to a better syringe.
A friend for coffee. Very nice, if you can ignore the screams and shouts and general tantrumage coming from tLP over everything and nothing at all. Sigh.
Fish and chips and mushy peas for munch. Sometimes it's just the only thing to do. And very nice too.
Then this afternoon a bit of a bake. Salted caramel chocolate tart, having been seduced by a friend's description earlier this week.
Chocolate pastry. Yum.
Salted caramel. A little underdone, but still very yum.
Chocolate goo. Always yum.
More chocolate pastry left, so mix up another batch of caramel to try again. Turn around to see tLP has moved on from rolling out the pastry, to painting the pastry with liquid soap. Bin pastry, shout at tLP, pour slightly burnt caramel over slightly ancient bananas and eat with a spoon. Reasonably yum.
Get into pointless debate over drinking water, eating coleslaw, and not reversing into people's feet.
Bedtime for girls, then more sewing on what started out as a quick fix and has become a ridiculously complex project. That blogger who said she finished hers whilst her baby was napping was either exaggerating, or her baby was in a prolonged coma. Or, possibly, she's a faster and more efficient sewer than I.
Do five minutes sewing. Find error. Spend 90 minutes unpicking and give up for the night realising only one inch of twelve has been undone.
Go to bed. Rejoice in the knowledge that tomorrow is a whole nother day, and His mercies are new every morning.
Tia
And then a dead bird (no photo. Be thankful). And then a live bird with broken legs. Shut Benjamin into the shower room, took noisy struggling bird outside, dropped him into a quiet corner of the hedge - into Grolly's jaws. Oops. Scooped up Grolly, shut her into the house; she leapt through my legs, grabbed the bird and disappeared into unreachable shrubbery. Released Benjamin on the theory two cats might despatch bird faster than one. Sigh.
Girls waking, I managed to send Mog's breakfast (weetabix and vegetable juice) all over her new rug and up the wall. A blood bath echoing the one taking place outside. Oops. Later, I will repeat this feat with her lunch (spaghetti bolognese), before deciding to switch to a better syringe.
A friend for coffee. Very nice, if you can ignore the screams and shouts and general tantrumage coming from tLP over everything and nothing at all. Sigh.
Fish and chips and mushy peas for munch. Sometimes it's just the only thing to do. And very nice too.
Then this afternoon a bit of a bake. Salted caramel chocolate tart, having been seduced by a friend's description earlier this week.
Chocolate pastry. Yum.
Salted caramel. A little underdone, but still very yum.
Chocolate goo. Always yum.
More chocolate pastry left, so mix up another batch of caramel to try again. Turn around to see tLP has moved on from rolling out the pastry, to painting the pastry with liquid soap. Bin pastry, shout at tLP, pour slightly burnt caramel over slightly ancient bananas and eat with a spoon. Reasonably yum.
Get into pointless debate over drinking water, eating coleslaw, and not reversing into people's feet.
Bedtime for girls, then more sewing on what started out as a quick fix and has become a ridiculously complex project. That blogger who said she finished hers whilst her baby was napping was either exaggerating, or her baby was in a prolonged coma. Or, possibly, she's a faster and more efficient sewer than I.
Do five minutes sewing. Find error. Spend 90 minutes unpicking and give up for the night realising only one inch of twelve has been undone.
Go to bed. Rejoice in the knowledge that tomorrow is a whole nother day, and His mercies are new every morning.
Tia
Golden Days
Some days, life is just plain good.
A couple of not so great nights, but both girls woke up full of sweetness and light this morning. No battles over hair or choice of television programmes, no struggles with food, minimal choking, and a balmy day to walk to church.
TLP all revved up for Godzone, and Miss Mog being very clear about wanting to come into church instead. Normally, Mog snoozes through morning church. But not this morning. "Let's use our voices to shout praise to The Lord", and Mog was off, singing and cooing and generally making her presence felt.
Silence, apart from the odd choke, for the sermon. But an intent silence, and very clear silent YES responses which for another child, in a less orderly Anglican church might easily have converted themselves into "Amen, Sister!" in response to Ros' sermon.
YES God gives blessings, YES, blessings are good, YES, Jesus is great and YES Jesus loves us. YES, heaven is here and YES heaven is our future home and YES a new creation. YES the disciples were empowered and YES the Ascension changed the world and YES God is good. And on and on and on, pausing just to splutter and drown a little at times, partly I am sure due to the amount of movement and concentration required to produce so many clear and consistent YESes (Mog can't talk, but opens her mouth wide and sticks her tongue out to say YES).
Silence for the prayers and YES she wanted to go forwards for a blessing herself at the end. Our church is not built for wheelchair users to go against the flow of traffic, but we managed. And YES she wanted a blessing and YES she welcomed the Holy Spirit.
YES she wanted to tell Ros how much she'd enjoyed the sermon and YES she'll take another blessing, thank you very much.
And then home, and get ready to visit friends. And YES please to having her nails made beautiful, and YES please to lots of food, and YES YES to seeing the new chickens.
Meanwhile tLP put her princess dress on, hearing that another princess was at the house of our friends. Sadly no princess appeared, but she and her friend enjoyed a rousing light saber battle or two, as she demonstrated her a) total unawareness of any thing Star Wars related b) willingness to join in anyway, and c) total lack of fear of dogs. Which is a huge change from the weekly clingy little thing she used to be.
A golden afternoon; good food - first barbecue of the season for us if not for them - good friends, and jolly good fun. Just being able to be outside, sitting down, in short sleeves. I think we'd all got to the point of doubting that would ever happen again.
A shortish seizure interrupting events briefly, but treating it with diazepam actually meant we could stay longer rather than needing to race home for regular evening meds. Blessing in disguise maybe?
Giggly Mog, chatty happy tLP, all children entertained and the chance to catch up with friends. A bank holiday weekend without rain. And now home, and a very late night, but two three happy contented sleepy sleepy people.
Night all, God bless.
Tia.
A couple of not so great nights, but both girls woke up full of sweetness and light this morning. No battles over hair or choice of television programmes, no struggles with food, minimal choking, and a balmy day to walk to church.
TLP all revved up for Godzone, and Miss Mog being very clear about wanting to come into church instead. Normally, Mog snoozes through morning church. But not this morning. "Let's use our voices to shout praise to The Lord", and Mog was off, singing and cooing and generally making her presence felt.
Silence, apart from the odd choke, for the sermon. But an intent silence, and very clear silent YES responses which for another child, in a less orderly Anglican church might easily have converted themselves into "Amen, Sister!" in response to Ros' sermon.
YES God gives blessings, YES, blessings are good, YES, Jesus is great and YES Jesus loves us. YES, heaven is here and YES heaven is our future home and YES a new creation. YES the disciples were empowered and YES the Ascension changed the world and YES God is good. And on and on and on, pausing just to splutter and drown a little at times, partly I am sure due to the amount of movement and concentration required to produce so many clear and consistent YESes (Mog can't talk, but opens her mouth wide and sticks her tongue out to say YES).
Silence for the prayers and YES she wanted to go forwards for a blessing herself at the end. Our church is not built for wheelchair users to go against the flow of traffic, but we managed. And YES she wanted a blessing and YES she welcomed the Holy Spirit.
YES she wanted to tell Ros how much she'd enjoyed the sermon and YES she'll take another blessing, thank you very much.
And then home, and get ready to visit friends. And YES please to having her nails made beautiful, and YES please to lots of food, and YES YES to seeing the new chickens.
Meanwhile tLP put her princess dress on, hearing that another princess was at the house of our friends. Sadly no princess appeared, but she and her friend enjoyed a rousing light saber battle or two, as she demonstrated her a) total unawareness of any thing Star Wars related b) willingness to join in anyway, and c) total lack of fear of dogs. Which is a huge change from the weekly clingy little thing she used to be.
A golden afternoon; good food - first barbecue of the season for us if not for them - good friends, and jolly good fun. Just being able to be outside, sitting down, in short sleeves. I think we'd all got to the point of doubting that would ever happen again.
A shortish seizure interrupting events briefly, but treating it with diazepam actually meant we could stay longer rather than needing to race home for regular evening meds. Blessing in disguise maybe?
Giggly Mog, chatty happy tLP, all children entertained and the chance to catch up with friends. A bank holiday weekend without rain. And now home, and a very late night, but two three happy contented sleepy sleepy people.
Night all, God bless.
Tia.
Duck!
Ever wondered what it might look like if several thousand rubber ducks were released all at once in a fairly slow running stream?
Here's your answer.
Despite many eddies, an unfortunately situated gully, and several vole holes, eventually a leader duck made it across the finishing line, netting it's lucky owner £300.
We didn't win. But, as one of the charities who will benefit was ROSY, the girls were grabbed by a photographer and a rather large duck, to spread the word. Smiling at a photographer with a huge camera is a big enough prize for tLP, at any rate. And mad races across fields and around the garden centre work pretty well as a back up. As for me, I'll settle for tea and cakes and the sound of happy children.
A lovely afternoon together before tLP's sleep study. Currently sharing a hospital room with two babies and a woman who may be in labour. It's an interesting location.
Tia.
Here's your answer.
Despite many eddies, an unfortunately situated gully, and several vole holes, eventually a leader duck made it across the finishing line, netting it's lucky owner £300.
We didn't win. But, as one of the charities who will benefit was ROSY, the girls were grabbed by a photographer and a rather large duck, to spread the word. Smiling at a photographer with a huge camera is a big enough prize for tLP, at any rate. And mad races across fields and around the garden centre work pretty well as a back up. As for me, I'll settle for tea and cakes and the sound of happy children.
A lovely afternoon together before tLP's sleep study. Currently sharing a hospital room with two babies and a woman who may be in labour. It's an interesting location.
Tia.
TLP logic
Mummy, how old were you when you were my age?
And how old was Grannie when she was my age?
Tia
And how old was Grannie when she was my age?
Tia
Eye of the storm
Faith's a funny thing. Faith let me treat Mog's big seizure last week, then leave her at school to go swimming. And then enabled me to leave her at the hospice for a long weekend, as I went off for a weekend a couple of hours away. That couple of hours is significant - thirty minutes is my comfort zone, my ability to get back to her bedside to give her the second dose of emergency medication, my chance to be with her before it's all too late. Helen House is the only place I can leave her when I'm more than thirty minutes away, and even then I rarely do.
Logically, I know that Mog is just as safe in God's hands whether I'm sitting right beside her or on an island with a lengthy walk and then a ferry and then a too long drive home to get to her. But whilst my head says "God's in charge", my heart says "My beloved child; what if she needs me?"
Which makes Sunday all the more precious.
Saturday was a beautiful day. It was a day with 1477 other women (and a few brave men in the band!), an appointment with God which we'd booked up in the middle of a different storm, in January. Make a date with God and He tends to show up. And there was worship, and there were tears, and there was teaching, and because it was my friend and I, there was a certain amount of inappropriate laughing too. But God made us, and God gave us both a shared sense of humour, and I think He might have been laughing too.
A message delivered so fast that I'm finding different sentences floating up now; sentences I'd somehow filed away to think about later whilst trying to keep up with the next thing Christy Whimber was saying. And a message I didn't entirely agree with, but like an apple; plenty of sweetness, a hint of sharpness, lots to chew on, and some pips to be spat out.
And a beautiful sunny afternoon, a walk along the rocks, and as bonus light relief from some of the heaviness of the day, a big black lab bouncing along the waves, exuberantly retrieving the most revolting tennis ball ever from the black salty water.
And then another lovely meal at our hotel, and then tears and honesty and openness and a ridiculously late night (Sorry my friend!), followed by a good night's sleep.
Sunday was supposed to be cloudy and cold and somewhat grotty; we had gone to bed knowing that we'd had the best of the weekend on Saturday. But instead we woke to streams of sunshine forcing their way through the gaps in the curtains; a perfect day for our trip to the island.
And not once did I stop to think about how far away from Mog I'd be. After a wobble on Saturday night, I woke up without any of the "what-if she needs me"s on Sunday. Just knowing she was safe in God's hands, and in the hands of the hospice staff, and not even thinking very much about either girl, except to be thankful for them.
And the day was a gift. I think God likes to give us things, and on Sunday He just kept on giving. We had a slow start, but still managed to catch the first ferry of the morning. And the sun blazed down on us, and the water danced, and we landed on beautiful Brownsea Island. We walked through Scouting history, and we were surrounded by outstanding beauty, and the sun shone down on us. The ground was soft beneath our feet; moss carpets and bouncy clay; the ultimate in easy walking. I had forgotten how good it is to walk without either pushing a heavy chair or carrying a heavy backpack. And my friend carried our water and money, so I had nothing but my coat to hold me down.
It was a day for singing, a day for tree climbing, a day for dipping toes into icy cold water. A day for discovering that my friend's geocaching habit can actually be quite fun (Yes - I apologise to all of you for being rude about it in the past). A day for nearly being savaged by an angry peacock, a real "Taste and see that the Lord is good" kind of a day. A red squirrel. Birds. Scouts camping where Baden Powell held the first ever Scout camp. Bell ringers in a tiny church. Pink trees, blue skies, steep paths climbed gently. Laughing and smiling and talking and standing together in silence.
Finally time to start thinking about coming home. And so we meandered down to the ferries again, and, the icing on the cake, our own private upper deck (OK - the wind was up and no one else was silly enough to want to freeze) and so our own private tour around the other islands in the harbour. Sitting freezing feeling the force of the wind, and realising that what we'd expected to be the first step towards home was in fact the icing on the cake, an extra portion running over. God is good.
A clear run home, and a slow walk back to normality. The chance to get to an evening service (happens once or twice a decade), a peaceful night, and then a different kind of busy day on Monday.
And then back to reality with a bump and a bang and a whole lot of twitching. A Mog with a long long seizure - record long for her - and a Mog struggling either with whatever new breathing thing caused the seizure in the first place, or with whatever breathing thing the huge dose of diazepam has left her with. Hopefully temporarily. But a night full of alarms and beeps, and now a morning where she has woken up as I write this, but is unable to cope without her CPAP.
A morning where I'm back to "Help me, God, I don't know if I can do this", and a morning where the reality of the possibility of losing her (not immediately - I assure you I wouldn't be blogging if that were the case!) feels far too close. The sea is so wide and my boat is so small, protect me O Lord.
Is my faith any less than it was when I left here on Friday? No. Am I scared? Yes. But Sunday is a precious jewel of a memory, a bright shining reminder of how much God loves me, and how He is so much more immeasurably immensely everything than I can ever possibly begin to imagine. And tears and worship come hand in hand. This weekend we stepped briefly into the eye of the storm, and there was peace and beauty and perfection - and we were sheltered from the winds of life around us. And now I've stepped back into the storm again, and I'm breathless. Breathe on me.
Jesus, be the centre.
Tia
Logically, I know that Mog is just as safe in God's hands whether I'm sitting right beside her or on an island with a lengthy walk and then a ferry and then a too long drive home to get to her. But whilst my head says "God's in charge", my heart says "My beloved child; what if she needs me?"
Which makes Sunday all the more precious.
Saturday was a beautiful day. It was a day with 1477 other women (and a few brave men in the band!), an appointment with God which we'd booked up in the middle of a different storm, in January. Make a date with God and He tends to show up. And there was worship, and there were tears, and there was teaching, and because it was my friend and I, there was a certain amount of inappropriate laughing too. But God made us, and God gave us both a shared sense of humour, and I think He might have been laughing too.
A message delivered so fast that I'm finding different sentences floating up now; sentences I'd somehow filed away to think about later whilst trying to keep up with the next thing Christy Whimber was saying. And a message I didn't entirely agree with, but like an apple; plenty of sweetness, a hint of sharpness, lots to chew on, and some pips to be spat out.
And a beautiful sunny afternoon, a walk along the rocks, and as bonus light relief from some of the heaviness of the day, a big black lab bouncing along the waves, exuberantly retrieving the most revolting tennis ball ever from the black salty water.
And then another lovely meal at our hotel, and then tears and honesty and openness and a ridiculously late night (Sorry my friend!), followed by a good night's sleep.
Sunday was supposed to be cloudy and cold and somewhat grotty; we had gone to bed knowing that we'd had the best of the weekend on Saturday. But instead we woke to streams of sunshine forcing their way through the gaps in the curtains; a perfect day for our trip to the island.
And not once did I stop to think about how far away from Mog I'd be. After a wobble on Saturday night, I woke up without any of the "what-if she needs me"s on Sunday. Just knowing she was safe in God's hands, and in the hands of the hospice staff, and not even thinking very much about either girl, except to be thankful for them.
And the day was a gift. I think God likes to give us things, and on Sunday He just kept on giving. We had a slow start, but still managed to catch the first ferry of the morning. And the sun blazed down on us, and the water danced, and we landed on beautiful Brownsea Island. We walked through Scouting history, and we were surrounded by outstanding beauty, and the sun shone down on us. The ground was soft beneath our feet; moss carpets and bouncy clay; the ultimate in easy walking. I had forgotten how good it is to walk without either pushing a heavy chair or carrying a heavy backpack. And my friend carried our water and money, so I had nothing but my coat to hold me down.
It was a day for singing, a day for tree climbing, a day for dipping toes into icy cold water. A day for discovering that my friend's geocaching habit can actually be quite fun (Yes - I apologise to all of you for being rude about it in the past). A day for nearly being savaged by an angry peacock, a real "Taste and see that the Lord is good" kind of a day. A red squirrel. Birds. Scouts camping where Baden Powell held the first ever Scout camp. Bell ringers in a tiny church. Pink trees, blue skies, steep paths climbed gently. Laughing and smiling and talking and standing together in silence.
Finally time to start thinking about coming home. And so we meandered down to the ferries again, and, the icing on the cake, our own private upper deck (OK - the wind was up and no one else was silly enough to want to freeze) and so our own private tour around the other islands in the harbour. Sitting freezing feeling the force of the wind, and realising that what we'd expected to be the first step towards home was in fact the icing on the cake, an extra portion running over. God is good.
A clear run home, and a slow walk back to normality. The chance to get to an evening service (happens once or twice a decade), a peaceful night, and then a different kind of busy day on Monday.
And then back to reality with a bump and a bang and a whole lot of twitching. A Mog with a long long seizure - record long for her - and a Mog struggling either with whatever new breathing thing caused the seizure in the first place, or with whatever breathing thing the huge dose of diazepam has left her with. Hopefully temporarily. But a night full of alarms and beeps, and now a morning where she has woken up as I write this, but is unable to cope without her CPAP.
A morning where I'm back to "Help me, God, I don't know if I can do this", and a morning where the reality of the possibility of losing her (not immediately - I assure you I wouldn't be blogging if that were the case!) feels far too close. The sea is so wide and my boat is so small, protect me O Lord.
Is my faith any less than it was when I left here on Friday? No. Am I scared? Yes. But Sunday is a precious jewel of a memory, a bright shining reminder of how much God loves me, and how He is so much more immeasurably immensely everything than I can ever possibly begin to imagine. And tears and worship come hand in hand. This weekend we stepped briefly into the eye of the storm, and there was peace and beauty and perfection - and we were sheltered from the winds of life around us. And now I've stepped back into the storm again, and I'm breathless. Breathe on me.
Jesus, be the centre.
Tia
Chatsworth
We have upgraded our holiday accommodation slightly!
OK maybe not, but we did manage (after a bit of persuasion and a promise that Mog's chair was not in fact a powered chair) to get the full tour with our own personal tour guide and Princess-transferred-to-an-adult-manual-chair pusher.
All good, apart from our half hour stand-off at the sculptures.
And home, and a sillily giggly tickle-the-pickle toddler, and a very twitchy Mog. But a mostly pretty good day. And tLP even finally registered that whilst going home would mean seeing the cats again (her aim all week), it would also mean not seeing our friends any more. I think that's progress.
Tia
OK maybe not, but we did manage (after a bit of persuasion and a promise that Mog's chair was not in fact a powered chair) to get the full tour with our own personal tour guide and Princess-transferred-to-an-adult-manual-chair pusher.
All good, apart from our half hour stand-off at the sculptures.
And home, and a sillily giggly tickle-the-pickle toddler, and a very twitchy Mog. But a mostly pretty good day. And tLP even finally registered that whilst going home would mean seeing the cats again (her aim all week), it would also mean not seeing our friends any more. I think that's progress.
Tia
Ilam.
Photos by C, as I handily forgot my phone. Friends, fine weather, teeny tiny roads with scary great precipitous drops far too close for comfort. Spectacular scenery, twin lambs everywhere and a calf carefully hidden in a byre. Wheelchair backsies for the toddler, giggles and hand holding for the two older children; long days for two mums but good times all round.
Tia
Tia
Eight
Happy Birthday, Little Princess!
I love the way you work so hard at your reading.
I love the stories you write down in your best handwriting.
I love your honesty and the way you don't hesitate to share your opinion, but also how you freely apologise when you see any errors you might have made.
I love how much you love your friends, and your ability to make friends with children and adults of all ages.
I love your determination and independence.
I love how you are able to try out new things, yet still enjoy some of the presents you had for your second birthday, the first birthday you shared with us.
I love how you find ways to include your sister in everything, just as your school friends dance around finding ways to include you in every way.
I love your arms around my neck, your body snuggled close to mine, your breath whispering loving nothings into my ears day after day after day.
I love you, my beautiful fairy princess birthday girl!
I love the way you work so hard at your reading.
I love the stories you write down in your best handwriting.
I love your honesty and the way you don't hesitate to share your opinion, but also how you freely apologise when you see any errors you might have made.
I love how much you love your friends, and your ability to make friends with children and adults of all ages.
I love your determination and independence.
I love how you are able to try out new things, yet still enjoy some of the presents you had for your second birthday, the first birthday you shared with us.
I love how you find ways to include your sister in everything, just as your school friends dance around finding ways to include you in every way.
I love your arms around my neck, your body snuggled close to mine, your breath whispering loving nothings into my ears day after day after day.
I love you, my beautiful fairy princess birthday girl!
"But I didn't know what to say."
"Tell X I'm thinking of her," says the friend, the therapist, the person we speak to every week but have never gone beyond a five minute chat, "I was going to get in touch, but I didn't know what to say."
I've had a lot of those messages lately. No criticism; children aren't supposed to die before their parents, and there aren't neat formulae, and people don't want to get it wrong.
There are some people, of course, who manage to get it very wrong. A few pointers; please, even if you consider your pets to be your children, don't say you understand because you remember how awful you felt when your dog died. You may very well have felt awful, but the person you're talking to will hear you comparing their beloved child to a dog. And that's insulting.
Don't suggest "it's all for the best, really" - I can say that about my child, if that's how I'm feeling, but if you say it, I'll probably want to thump you. That might be irrational, but before you do say it, forget how disabled my child was and concentrate on the fact she was my child. And imagine how you'd feel if it were your child. "All for the best" probably doesn't come close.
Now is possibly not the time to argue theology. If X takes comfort from the idea that her child has grown angel wings, Y might prefer to think that her child is now perfectly at rest, Z may consider her child kicking up a ruckus in Heaven, and P and Q may believe their child is sleeping peacefully until they will meet again. L might be wondering what body their son will inhabit next, and D may be worried about a lonely soul wandering the earth. Doesn't matter; bite your tongue and pray for their salvation if you like, but unless you're being asked for your opinion, be polite about theirs. Don't take away their comfort over matters of principal.
There is no wrong way to mourn. One family may seem to be buoyant and inappropriately hilarious; doesn't mean they don't feel things just as deeply as the family who are weeping and tearing their clothes. And whilst the parents don't have a monopoly on grief, they are the chief mourners. Don't expect them to be able to comfort you over your own deep sense of loss for their child.
So what to do, what to say, how to help?
Different families are going to want and need different things. Some families may wish to close ranks and need complete privacy, telephone silence. Don't be insulted if they don't call back - this isn't about you, it's about them. Others may be desperate for someone to take small children for a few hours to give the parents breathing space, or need constant company to avoid panic setting in.
Many will be so bound up in the bigger decisions that seemingly smaller decisions are impossibly hard. So make your offer of help concrete - instead of "what can I do to help?" or "now you let me know if there's anything I can do", think of something you can offer - "I have made an extra lasagne, would you like it for tea?", "I"m going to the shops, do you need milk and biscuits?" and don't be insulted if the offer is rejected. The energy involved in thinking about the every day stuff of living is just huge, when every part of your mind is occupied with the dawning realisation that your precious beloved child is not living any more.
If you know the family in a professional capacity, especially from school or other settings where you regularly saw the child without the parents, now is the time to dig out those photographs. There can be no new memories, and that is hard. There will never be another breathtaking smile. But you may have new photographs, and they are so precious. Each snapshot another glimpse into the wholeness of the child. So dig through your records, and get those photos onto a disc. Don't print them onto flimsy paper that will fade and crumple, and dissolve when they get cried over; if you had them on your computer get them onto a memory stick and pass them on - you're giving the family the most precious gift you could ever imagine.
For everyone, once there's no more living to be done, the only newness will be the new memories. So if you have a particular memory of the child, write it down and share it. It doesn't matter how you spell it, what your handwriting's like, whether the card has the perfect picture on the front (although personally I'd avoid Happy Birthday ones), share that story, however small, and you've given the family another precious gift, another glimpse into their child's story.
"You kept her lovely," "He always looked so happy," "I could see the love between you," "I loved the way she did that thing with her fingers." All beautiful, precious gifts. Now is probably not the time to mention how sick to death of her screaming you used to get, or how you hated the marks the wheelchair made. Stick to the positive comments.
Don't be afraid to mention her name; don't assume that because I don't, she has been forgotten. There is no time limit on grief. My loss is less immediate than many of my friends, and most of the time now that is much easier to bear. But it doesn't get any easier after three days or a week, and whilst there is a sense of completion which may come when the funeral is over, it can be even harder in the days following, with no distractions by way of choosing the right songs and the correct order of service and making sure everyone has been kept informed. So keep in touch, and if your meal or your company or your offer to collect the children from school was turned down previously, gently offer it again. But again, don't be offended if it's not accepted. This is about what the parents need, not about your need to feel better.
Which feels like an appropriate time to mention physical contact. Dusty Elbows, in fact. If you wouldn't ordinarily touch the person you are talking to, please think about why you're trying to now. And if the person is backed into a corner, surrounded by friends, please consider the possibility that this is a deliberate strategy to avoid being touched by people after having overdosed on the touchy-feely hugs. Not everyone is a huggy person. And even very huggy people can reach hug overload. And I've not personally met anyone who would actively choose to have their knees hugged, especially by someone they've not previously met. If the kneecap is the only body part you can reach, think about whether a wave will do instead.
For the record, since I'm linking to Dusty Elbows, and since people reading that in the past have told me I've said I don't like hugs, I shall state here that I do, in fact, like a good hug. I'm not very good at offering them, though. But I don't like being touched by people I don't know very well, who wouldn't normally touch me, I don't like having my back stroked when I'm not expecting it, and I have a feeling I'm probably not the only person in the world for whom that is true. But - touchy feely, standoffish, middle of the road, whatever - it's not about you, it's about the person you're attempting to comfort. If what you're doing is causing them to stiffen, if they appear to be backing away, please let them run! Oh - and in the interests of accuracy, I should state the church coffee now is jolly tasty.
Do be ready to listen. And don't be surprised if what you're hearing is something totally unrelated to the child's death. Remember, chances are the person you're talking to has been talking to several dozen other people lately, and he or she may well not want to repeat the same conversation to you. Or they might - and they might, in fact, be repeating the same conversation you had with them last time you spoke. If you have the time, listen again. Sometimes repetition is important, and repeated affirmations in response are what the individual needs to hear.
Now is probably not the time to complain about your own child's problems in school, or how awful your cold is making you feel. Although actually, talking about school problems can be a nice diversion - but don't be offended if the person you're talking to fades out of the conversation. Probably time to offer more cake, or think about leaving.
You may have very clear ideas on what should be happening. You may have to bite your lip. If the family don't want to sue the hospital, or tell you that isn't something that would help, don't bring it up again. If the parents have chosen a funeral which is rather different to the style of funeral you have always known, consider it an opportunity to broaden your experience. You may actually have done this a hundred times before and have countless experience to offer. If the parents are fading out, or being carefully polite, think about changing the subject. You may also not be the only one with experience, and they may have asked someone else already. This isn't a slight on you - it isn't about you, it's about what's right for the parents. By all means offer, but don't try to force the issue.
Not every conversation has to be deep and meaningful. If you're queuing together for coffee, and you've already had the "I'm so sorry for your loss"/"I was so sad to hear about what happened"/"So this hasn't been the easiest month ever then?" conversation, a simple "Hello" might do it. Normal conversation is good too, a lot of the time. But if you've heard the news from someone else, and you haven't acknowledged it, then do offer sympathy. Not doing so leaves us wondering whether you know or not, and breaking the news is hard to do.
Be yourself. Death, despite recent statistics amongst our friends, is not infectious. You won't catch it by spending time with us. Well, not unless you're really annoying. But if you're doing something you do regularly, and you normally invite the recently bereaved parents, invite them. Don't be offended if they decline the invitation, but don't just assume they won't want to join in.
You don't need a special voice, and there's no real reason why your head needs to rest on one shoulder. The people you're talking to haven't suddenly become saints or angels either. They are the same people they always were; but with a grief which has rocked their souls. That takes some time to get used to - and it isn't something you can understand fully until you have experienced it. Which isn't about excluding you. It isn't about you - it's all about the other person.
So to summarise. Don't compare the parents' grief with yours over the loss of your dog. Even if it devastated you at the time. Don't assume that the grief is less because the child was disabled - if anything, the sense of dislocation may be even higher, because chances are the parents spent much of the day just meeting the child's complex needs. Not having to do that may seem to you to be a blessed relief. But the parents would probably give an awful lot to be doing that again. Don't assign the parents a time scale after which they should be over it. And don't use the parents to try to make you feel better yourself. Don't make it about you - it isn't.
Do respect the parents' personal space, treat them as people and as the people they always were. Do talk about the child, share your memories and any photos you have of the child, and be responsive to signs that the parents would rather talk about other things. If you have something practical to offer, do offer it - but don't be offended if any offer is declined.
And if you're reading, and you think I've missed something, or disagree with me completely and utterly about something, please feel free to add a comment.
Tia
I've had a lot of those messages lately. No criticism; children aren't supposed to die before their parents, and there aren't neat formulae, and people don't want to get it wrong.
There are some people, of course, who manage to get it very wrong. A few pointers; please, even if you consider your pets to be your children, don't say you understand because you remember how awful you felt when your dog died. You may very well have felt awful, but the person you're talking to will hear you comparing their beloved child to a dog. And that's insulting.
Don't suggest "it's all for the best, really" - I can say that about my child, if that's how I'm feeling, but if you say it, I'll probably want to thump you. That might be irrational, but before you do say it, forget how disabled my child was and concentrate on the fact she was my child. And imagine how you'd feel if it were your child. "All for the best" probably doesn't come close.
Now is possibly not the time to argue theology. If X takes comfort from the idea that her child has grown angel wings, Y might prefer to think that her child is now perfectly at rest, Z may consider her child kicking up a ruckus in Heaven, and P and Q may believe their child is sleeping peacefully until they will meet again. L might be wondering what body their son will inhabit next, and D may be worried about a lonely soul wandering the earth. Doesn't matter; bite your tongue and pray for their salvation if you like, but unless you're being asked for your opinion, be polite about theirs. Don't take away their comfort over matters of principal.
There is no wrong way to mourn. One family may seem to be buoyant and inappropriately hilarious; doesn't mean they don't feel things just as deeply as the family who are weeping and tearing their clothes. And whilst the parents don't have a monopoly on grief, they are the chief mourners. Don't expect them to be able to comfort you over your own deep sense of loss for their child.
So what to do, what to say, how to help?
Different families are going to want and need different things. Some families may wish to close ranks and need complete privacy, telephone silence. Don't be insulted if they don't call back - this isn't about you, it's about them. Others may be desperate for someone to take small children for a few hours to give the parents breathing space, or need constant company to avoid panic setting in.
Many will be so bound up in the bigger decisions that seemingly smaller decisions are impossibly hard. So make your offer of help concrete - instead of "what can I do to help?" or "now you let me know if there's anything I can do", think of something you can offer - "I have made an extra lasagne, would you like it for tea?", "I"m going to the shops, do you need milk and biscuits?" and don't be insulted if the offer is rejected. The energy involved in thinking about the every day stuff of living is just huge, when every part of your mind is occupied with the dawning realisation that your precious beloved child is not living any more.
If you know the family in a professional capacity, especially from school or other settings where you regularly saw the child without the parents, now is the time to dig out those photographs. There can be no new memories, and that is hard. There will never be another breathtaking smile. But you may have new photographs, and they are so precious. Each snapshot another glimpse into the wholeness of the child. So dig through your records, and get those photos onto a disc. Don't print them onto flimsy paper that will fade and crumple, and dissolve when they get cried over; if you had them on your computer get them onto a memory stick and pass them on - you're giving the family the most precious gift you could ever imagine.
For everyone, once there's no more living to be done, the only newness will be the new memories. So if you have a particular memory of the child, write it down and share it. It doesn't matter how you spell it, what your handwriting's like, whether the card has the perfect picture on the front (although personally I'd avoid Happy Birthday ones), share that story, however small, and you've given the family another precious gift, another glimpse into their child's story.
"You kept her lovely," "He always looked so happy," "I could see the love between you," "I loved the way she did that thing with her fingers." All beautiful, precious gifts. Now is probably not the time to mention how sick to death of her screaming you used to get, or how you hated the marks the wheelchair made. Stick to the positive comments.
Don't be afraid to mention her name; don't assume that because I don't, she has been forgotten. There is no time limit on grief. My loss is less immediate than many of my friends, and most of the time now that is much easier to bear. But it doesn't get any easier after three days or a week, and whilst there is a sense of completion which may come when the funeral is over, it can be even harder in the days following, with no distractions by way of choosing the right songs and the correct order of service and making sure everyone has been kept informed. So keep in touch, and if your meal or your company or your offer to collect the children from school was turned down previously, gently offer it again. But again, don't be offended if it's not accepted. This is about what the parents need, not about your need to feel better.
Which feels like an appropriate time to mention physical contact. Dusty Elbows, in fact. If you wouldn't ordinarily touch the person you are talking to, please think about why you're trying to now. And if the person is backed into a corner, surrounded by friends, please consider the possibility that this is a deliberate strategy to avoid being touched by people after having overdosed on the touchy-feely hugs. Not everyone is a huggy person. And even very huggy people can reach hug overload. And I've not personally met anyone who would actively choose to have their knees hugged, especially by someone they've not previously met. If the kneecap is the only body part you can reach, think about whether a wave will do instead.
For the record, since I'm linking to Dusty Elbows, and since people reading that in the past have told me I've said I don't like hugs, I shall state here that I do, in fact, like a good hug. I'm not very good at offering them, though. But I don't like being touched by people I don't know very well, who wouldn't normally touch me, I don't like having my back stroked when I'm not expecting it, and I have a feeling I'm probably not the only person in the world for whom that is true. But - touchy feely, standoffish, middle of the road, whatever - it's not about you, it's about the person you're attempting to comfort. If what you're doing is causing them to stiffen, if they appear to be backing away, please let them run! Oh - and in the interests of accuracy, I should state the church coffee now is jolly tasty.
Do be ready to listen. And don't be surprised if what you're hearing is something totally unrelated to the child's death. Remember, chances are the person you're talking to has been talking to several dozen other people lately, and he or she may well not want to repeat the same conversation to you. Or they might - and they might, in fact, be repeating the same conversation you had with them last time you spoke. If you have the time, listen again. Sometimes repetition is important, and repeated affirmations in response are what the individual needs to hear.
Now is probably not the time to complain about your own child's problems in school, or how awful your cold is making you feel. Although actually, talking about school problems can be a nice diversion - but don't be offended if the person you're talking to fades out of the conversation. Probably time to offer more cake, or think about leaving.
You may have very clear ideas on what should be happening. You may have to bite your lip. If the family don't want to sue the hospital, or tell you that isn't something that would help, don't bring it up again. If the parents have chosen a funeral which is rather different to the style of funeral you have always known, consider it an opportunity to broaden your experience. You may actually have done this a hundred times before and have countless experience to offer. If the parents are fading out, or being carefully polite, think about changing the subject. You may also not be the only one with experience, and they may have asked someone else already. This isn't a slight on you - it isn't about you, it's about what's right for the parents. By all means offer, but don't try to force the issue.
Not every conversation has to be deep and meaningful. If you're queuing together for coffee, and you've already had the "I'm so sorry for your loss"/"I was so sad to hear about what happened"/"So this hasn't been the easiest month ever then?" conversation, a simple "Hello" might do it. Normal conversation is good too, a lot of the time. But if you've heard the news from someone else, and you haven't acknowledged it, then do offer sympathy. Not doing so leaves us wondering whether you know or not, and breaking the news is hard to do.
Be yourself. Death, despite recent statistics amongst our friends, is not infectious. You won't catch it by spending time with us. Well, not unless you're really annoying. But if you're doing something you do regularly, and you normally invite the recently bereaved parents, invite them. Don't be offended if they decline the invitation, but don't just assume they won't want to join in.
You don't need a special voice, and there's no real reason why your head needs to rest on one shoulder. The people you're talking to haven't suddenly become saints or angels either. They are the same people they always were; but with a grief which has rocked their souls. That takes some time to get used to - and it isn't something you can understand fully until you have experienced it. Which isn't about excluding you. It isn't about you - it's all about the other person.
So to summarise. Don't compare the parents' grief with yours over the loss of your dog. Even if it devastated you at the time. Don't assume that the grief is less because the child was disabled - if anything, the sense of dislocation may be even higher, because chances are the parents spent much of the day just meeting the child's complex needs. Not having to do that may seem to you to be a blessed relief. But the parents would probably give an awful lot to be doing that again. Don't assign the parents a time scale after which they should be over it. And don't use the parents to try to make you feel better yourself. Don't make it about you - it isn't.
Do respect the parents' personal space, treat them as people and as the people they always were. Do talk about the child, share your memories and any photos you have of the child, and be responsive to signs that the parents would rather talk about other things. If you have something practical to offer, do offer it - but don't be offended if any offer is declined.
And if you're reading, and you think I've missed something, or disagree with me completely and utterly about something, please feel free to add a comment.
Tia
