Thursday, November 30, 2017

The story of Teddy

The life and death of my son, born with osteogenesis imperfecta. My son Teddy, properly named Theodore Cassidy, was born on the 9th of June, 2017.  He died peacefully in his father's arms in the early hours of the 10th of June.


Teddy was diagnosed with the most severe type of osteogenesis imperfecta (OI) when I was about 26 weeks pregnant, and we were told that he would have no real chance of survival after birth.  A difficult pregnancy became even harder after learning this.  I was given the option to terminate;  the law allows for termination at any stage of a pregnancy where there is severe mental or physical disability.  To be honest, deciding to carry on was a difficult decision, especially when I saw my baby's many broken and part-healed bones on the scans.  Knowing he would die anyway, and thinking he might be in agony made a very good case for termination.

After several weeks of consideration, I decided to carry on for my own peace of mind;  I felt I would regret making the decision to end his life, and I didn't want that guilt.  I also wanted to meet him and hold him while he was alive.  I still wanted him and loved him, even if he was going to die.

I, the medical team, and Partner all made a very detailed birth plan to accord with my own wishes and to cope with every possible outcome.  We signed what was basically a DNR for Teddy, and we asked that no invasive procedures be performed;  we knew that it would not save him and would only cause more broken bones and pain.  We only asked that Teddy be given pain relief upon birth, and that he not be handled or touched by anyone but his dad and me.  Although we asked if a C section would be an easier birth for him, we were told that he would have to be roughly handled in order to get him out--it would likely be just as traumatic for him as natural birth--as well as a harder recovery for me.
Pregnant woman standing in a garden


I requested the birth pool at the hospital to make Teddy's entry into the world as gentle as possible.  I opted to have pethidine during labor, as it would pass through the placenta, giving him pain relief as well.  My labor was fairly easy and Teddy was born at 11.59 PM, with Partner and one midwife in attendance.  He weighed just 3 pounds and was 13 inches long.  The only outward clues to his condition were his small size, and his arms and legs were shorter than normal, though not by much:  he looked like a little baby doll.

I held and cuddled Teddy in the pool;  he was calm and not distressed at all.  He only blinked a little and snuggled up to me;  he didn't cry.  To me, he was perfect and I loved him with all my heart.  Partner took him once I got out of the pool, and held him skin to skin, covered in a warm towel;  Teddy passed away quietly not long after.  He lived for just about 15 minutes, though his official time of death was one hour and 36 minutes after birth.

As we had planned earlier, the hospital provided us with a cooled mattress pad called a cuddle cot, so that we could keep Teddy with us the rest of the night, and hold him if we wished.  Because he was kept cool, holding him was like holding a sleeping baby:  soft and relaxed.  I washed him and dressed him in a tiny onesie I'd bought, and a knitted matinee jacket and hat I'd made;  I wrapped him in a lacy shawl I'd knitted.  In the cuddle cot, I covered him with the patchwork quilt my mother had made when I was a baby, and which I'd covered Franklin in too.
Close up of a knitted matinee jacket
Two stripey knitted hats
Detail of a knitted lace shawl
The next day, along with Franklin, we went to Martin House hospice to stay for a week with Teddy, using their cuddle cot.  We were able keep him with us the whole time while we arranged for his burial;  we even took him for short walks around the hospice grounds several times.  Being at the hospice meant that we didn't have to worry about the small things like meals and chores or dodging friends and neighbors;  we were able to spend time as a family, loving Teddy for the little time we had with him.


On the day we buried him, we drove him from the hospice back home, to show him  our house and garden and chickens.  After I picked some rose petals to scatter on his grave, we drove on to the burial site.

We buried Teddy one week after he was born, in a wicker basket woven specially for him by a local basketmaker.  He was buried simply and privately, with just his parents and brother in attendance, in a natural cemetary where the forest and meadow meet.  He was buried with things we made for him:  the clothing and shawl I'd made, a necklace with his name made by his dad, and a little wooden airplane Franklin made.  We laid bouquets of wildflowers picked at the hospice.  My beautiful baby looked as though he was only sleeping;  Franklin read him a bedtime story before we lowered his basket and buried him ourselves.  We scattered the rose petals and a handful of wildflower seeds on his grave.


Now that the grief is not so raw, I can safely say that every memory I have of Teddy is a happy one.  I had a positive birth experience with him;  because we had met with hospital staff beforehand and written a very specific plan, my wishes were followed throughout.  My memories of the week we spent with him at the hospice are also happy, even though it was an intensely sad time.  The hospice was a cheerful place, set up for whole families including siblings (Franklin loved it there).  I'm so happy we had him with us for the entire week--I was able to kiss and cuddle him whenever I wished, right up to his burial. 

We have visited his grave every week since we buried him in June, to lay flowers  and to walk the meadow and meditate;  Franklin brings a little story to read at Teddy's grave.  We will always love our sweet baby boy and we're glad we had him, even though it was only for a short time;  I don't regret any of the choices we made.   He will always be a beloved son and brother;  we will never forget him.

If I were to give advice to my past self it would be:  make happy memories, starting right away.  Before birth, talk out loud to your baby, read to your baby--love and be proud of your baby.  You will have memories no matter what, and how much better to have happy memories than only sad ones.
A family portrait with parents, a young boy and a newborn baby

Monday, September 25, 2017

Decorating the living room

Many family photos, both on a wall and a table
Photo corner
This year we've been repainting and reorganizing some of the rooms in our house.  We have a small semi-detached house (which means we share a wall with the house next door).  There is a living room and kitchen/dining room downstairs, with three bedrooms and a bathroom upstairs.  That's it--unless you count the very small entryway and understairs cupboard. 

In January, Partner installed new laminate floorboards over the old exposed wooden floor in the living room, making it both warmer and brighter in there.  We repainted later in the spring, covering up Franklin's old crayon marks;  it's now a pretty powder blue (a few shades lighter than the previous sky blue walls).

We also repositioned the pictures on the walls, and got some more of our photos out of the albums to display;  I've been searching the charity shops for new photo frames and have found some good deals!  As a result, we've got a lovely corner with many photos of our family.  I actually have more photos to frame and hang--the corner's not finished yet. 

I'm on the lookout for a nice wooden dresser or sideboard to replace the rickety old bookshelf and tv cabinet which share another alcove--a secondhand (i.e. cheap) one from a charity shop would be perfect.  And maybe another rug for under the piano, complementing the seagrass one under the sofa.

I'm not really good at decorating, or house stuff in general--I'm more interested in gardening!  But I know what I like and that's good enough.

Monday, September 04, 2017

Enjoying the last of summer

Close up of a daylily and multiple nicotiana flowers in the sunlight
Daylily and nicotiana, next to the pond
Well, it's back to school this week.  Franklin drew a smiley face on the calendar (he crossed out the smiley face I put on the Last Day, too).  He's excited about starting Year Three, and for me it's a little bittersweet.  He's really growing up fast.

My parents have been and gone;  we ended up not really going anywhere with them, as our car is just too small for five people, especially when four are adults.  On the few journeys we took I was claustrophobic in the back seat, but had the dubious honor of being the second smallest adult, at 5'8".  In Partner's family, I'm the second tallest adult--the only one taller is Partner himself.

It was a nice visit however, and they helped us do some jobs, namely installing a new fence in the front garden (facing the street), and stripping the wallpaper off the master bedroom.  We've now repainted:  a light blue-gray with white trim, and have installed new wardrobes.  Just need curtains to complete the new look.  The old color was "magnolia", which is apparently the most popular color of paint in Britain;  it's a kind of pale peach, or pinky-yellow.  Every room in this house has been decorated at least once (some more) since I've lived here, except this bedroom.  Well, we're finally doing it.

My garden is growing really well this year, and at this point we're eating lots of vegetables from it.  Luckily there's been minimal slug damage this year, probably because it's been so dry and warm.  It feels like there's a touch of autumn in the air, though, so I'm getting outside as much as possible before it gets cold again.  Mainly I like to sit and watch the fish in the pond or the chickens.  Or sit on my gardening cushion pretending to weed (but actually just hanging out with the vegetables, you know).

Wednesday, July 19, 2017

Summer days

Photo of a rosebush with two yellow roses blooming
Yellow rose, lovely this year
It's been an unusually warm and dry spring and summer this year.  I've got quite a tan, and even some highlights in my hair--all natural, of course.  My garden is doing well, but needs regular watering:  not a common occurance on this rainy island. 

We've been to the seaside a few times, taking advantage of the warm weather.  We're about an hour and a half drive from our favorite beach and last time we went, we all went swimming:  or doggy paddling, at least.  The water was certainly warm enough;  Franklin practiced keeping his mouth shut while jumping waves (normally he never shuts his mouth--we can't get a word in edgewise!) and I got wet all the way up to my neck.  I dared Partner to do so too, and he rose to the challenge (eventually).

On the downside, it's hayfever season too.  I've been pretty miserable for a few days, without regular rain to wash away the pollen.  Normally I'm hoping the rain will stop--but now I want a nice refreshing shower every day.  Instead, I've had to take drastic measures:  a shower every night before bed to wash pollen off me, newly washed clothing every day (normally I'll wear clothes for about a week before washing, unless they're noticeably dirty), and splashing my face and arms with cold water several times a day.  I'm sick of it.  Let it rain!

This is Franklin's last week before school's out.  I wrote "Last Day" on the calendar with a smiley face next to it;  when he saw it, he told me I should have made a sad face instead.  He'll be sorry to leave his teacher and said he likes school because he's learning things to be a grown up man. 

We don't have any particular plans for when school's out (I have the full six weeks off work, too), though his grandparents will be visiting us for about two weeks.  Maybe we'll go to the beach.

Wednesday, May 31, 2017

The joy of line drying

Photo of sheets and pillowcases on a laundry line in a garden
Typical sunny day in the garden
On days like today (and for the past week and a half), drying my laundry on the line is such a pleasure.  I love to go out with the basket in the morning and peg it to the line.  It takes me about 8-10 minutes to get it out of the washing machine and onto the line out back--not a huge time commitment, though slower than shoving it in the dryer.

But hanging it out, smelling the fresh air, listening to the birds and seeing the greenery and flowers all around is just lovely.  It's a relaxing task and I truly enjoy it.

Taking it off the line in the afternoon isn't always as fun, however;  I have to fold it and put it away (though I leave Franklin's and Partner's clothing in piles for them to take upstairs themselves).  I try to fold each piece as I take it off the line, and place it into its designated pile in the basket:  all towels together, etc.  I prefer to fold it right there, although if I'm in a hurry--like when it's starting to rain--I'll toss it in the basket quickly and fold (or rehang on the airing rack if still wet) indoors.

On school days I'll generally put a wash on when I get up in the morning (around 8 am), but otherwise I'll put my wash on the night before;  the regular wash cycle of my front loader is around 90 minutes and I prefer to sleep in an hour extra--I don't want to wait around for the wash to finish until 10.30 or later on these days.  I can just get up and hang it on the line.

And when I change the sheets, putting the new line-dried ones on, they smell and feel so fresh and clean--no comparison with machine dried bedding.  I just love it.

Tuesday, April 25, 2017

Our very first egg hunt, 2017

Photo of green and orange eggs in a little rustic willow basket
Our own Easter eggs--I wove the basket from my own willow
For two weeks before Easter, we saved an egg every day from our white Leghorn hen--she's the only one who lays white eggs from our flock, and as the shops around here only sell brown eggs, we're lucky to have her!  We were determined to dye them and have an egg hunt in the garden, so we planned ahead.

Our first attempt at dyeing failed, because of the lack of actual food coloring at any local stores (Partner went looking for it and came back with "natural colouring" which did not work whatsoever).  Luckily for our second try, I had some leftover packets of Kool-aid which my mother sent me for dyeing yarn (works great on wool and animal fibers).  I only had orange and green left, but that was just fine by us.  Maybe I'll ask her to send me some red, blue, and yellow for next Easter.

Anyway, the Kool-aid dyed the hardboiled eggs brilliantly--just add boiling water--and we invited some friends over for lunch and egg hunting a few days before Easter.  They have a little girl just younger than Franklin and though it was a gray day, the two of them enjoyed both finding the eggs and hiding them for each other.
Photo of a little boy in a garden, holding up a dyed Easter egg with a huge smile
I found it!
Did I mention Franklin broke his arm that week, too?  His cast is under his hoodie in the picture;  luckily the arm's healing nicely and he should have the cast off in another week's time.  He was playing at the park with friends and fell off something that spins.  He's been quite proud of his cast and the story behind it.

Friday, March 10, 2017

Life in March

Photo of three chickens pecking a pile of grass clippings
Plucky, Tiny and Star, enjoying fresh grass clippings
We made it through the winter without losing a single chicken.  We ate Lavender the cockerel in November, clearly still in autumn.  We have a couple of old ladies in the flock, but they're still happy and interested, though Plucky at about 4.5 years old is noticeably slower than the rest.  However, she went through a big molt late last year and has a full set of soft new feathers, so we assume she'll be with us a bit longer.

Franklin had his seventh birthday this week.  He helped make his chocolate cake (we made our favorite brownie recipe, actually), and also picked out a cake from the shop to take to school.  I'm not prepared to organize another birthday party for him (once was enough for me!), but the three of us are going to Manchester Legoland Discovery Centre at the weekend for his special birthday treat.  Manchester is about a 60-90 minute drive from us, but it should be a fun day and luckily Partner's doing the driving.

I work in a school kitchen now instead of the hotel restaurant.  Most of the local schools are run by the same catering company, and over the course of the last year and a half I've worked at most of them!  But I got a permanent contract at a school a few villages away starting last September.  I've really enjoyed this little school and have got to know many of the children there at lunchtime.  However, the company has lost some staff recently so there has been a reshuffle and I'm temporarily working at the local village school where Franklin attends.  I've been told it's until more staff are recruited, but I suspect I may be there for the rest of the school year (July).  It's nice to be able to walk to there, though it's a bit harder work seeing as they cater to more than twice as many kids as my old school.  Still, I'm enjoying it while it lasts, and it's nice to get a wave and a smile from Franklin during lunchtime.

Sunday, February 05, 2017

Spring cleaning

Oh it's been a while!  It's not that nothing's going on, though:  just been living life.

I hibernated for a few months this winter, from November till about mid January.  I hardly went out into the garden, even.  I've been busily pursuing my indoor crafts, including hand quilting another quilt (log cabin--much simpler than my last applique quilt).  I really want to make another rag rug, but am saving it till my quilt is finished.  Maybe in spring.

I've re-listened to Marie Kondo's book, and am going to restart her method.  Last year I went through my clothes, books, and papers;  I'm ready to move onto the next category, miscellaneous.  It's the biggest category, and seemed very daunting before.  I actually tackled a few sub-categories of it (such as fabric and stationery), but for the most part it's just there, huge and seemingly unconquerable.  I'm ready to give it another shot, though.
Photo of a back garden, showing an untidy patio, lawn, trees at the back, and chicken coop in the far corner
View from my back door, Feb 2017
In the meantime, I'm doing some deep cleaning, assisted by Franklin, age 6.  Yesterday I scrubbed off about three years of his stickers from the freezer door--it's nice and white again!  But there's a lot more to go;  housework isn't my forte, after all.