Sunday, 17 January 2016
Tuesday, 5 January 2016
When I first met Imi, she was completely and utterly Little Girl Lost. She didn't know who she was, where she was, what this world was meant to be.
She knew she was hungry, but she struggled to suck.
She knew she was tired, but seizures snapped her body into wakefulness.
And she knew love. She knew that she was safe snuggled into someone's arms, sucking on an adult's little finger with an intensity she never managed with either bottle or dummy.
And so I carried her. For two years, if she was awake, she was tucked up next to my heart, and perhaps the warmth of my body helped a little to lessen the spasms which twisted through her.
Right from the start, we were a part of a team. Her neurologist forever tweaking the balance between seizure control and sedation. Surgeons fixing bits of her body the spasticity pulled out of joint. Physios and other therapists encouraging her body into functional positions. Helen House providing a safe space so we could take time to just be a family, letting someone else juggle the meds and other regimes.
Imogen was a lot brighter than most of us realised. Incredibly limited by her body, she realised language had meaning when she was two. It took her another three years to find a way of making herself understood.
These were her golden years. Happy, small enough to be portable, we took holidays across Europe and Florida, and she loved the warmth and the attention. Roller coasters, cable cars, mountain railways and feeding dolphins.
And illnesses. Prolonged seizures and spasms contorting her body into painful asymmetry. Chest infections from which she never quite recovered, each one leaving her a little bit weaker, with more breathing problems.
Finally, two and a half years ago, she had the illness I think of as her tipping point. She lost her laugh. Smiling still happened, but it was hard work. There was pain. A lot of pain. School became too much for her, crowds overwhelmed her, and despite the morphine, she began spending longer and longer in bed.
She was still Imogen. She still had her wicked sense of humour, accusing respite staff of locking her in a dark cupboard, taking gleeful pleasure in kicking small children. Not able to howl with laughter any more, still she would grin widely and shout a yes if there were ever a chance to insult a friend.
And she loved. She loved to lie beside her best friend. She loved to have Amana brush her hair, or rub her hands. She loved to lie in bed and listen to everything happening around her in her en suite house.
And she loved God. New Wine was a highlight of the year for her; she managed to be up and awake hours earlier than at home, in order to make the morning worship sessions.
In her long wakeful nights, she chose to listen to her audio bible or gentle hymns.
Even in her last week at home, no longer able to tolerate any kind of food, in huge amounts of pain, she was still very clear she wanted to come to church. And with every breath she could muster, she sang.
It would be her last outing.
Imogen was tired. Exhausted. After that Sunday, she went to bed. And she was very clear she had no further wishes. She did not want to make the long trek up north to watch her friend be baptised. She didn't want to see anyone, do anything. She was done.
She knew exactly where she was and what was happening. As she got weaker she could no longer open her mouth to say yes, but settled for very clear, intentional blinks. Even the morning she died, she was able to let me know the song she was listening to was important to her, and that we should sing it today.
There were other conversations. And then there was rest.
Maybe looking at Imi, you'd think her life was sad and grim, and maybe you question the point of it all. I'm standing here to say it was all completely worth it. There was so much love, so much laughter. She lived a life that was deep and rich and full of joy. Imi knew what was important. She had a relationship with God that was deeper than many of us will ever know, and she was absolutely certain where she was going and with whom. When the time comes, I hope I can say the same.
Wednesday, 23 December 2015
Saturday, 12 December 2015
Thursday, 26 November 2015
So here's the thing.
I've written this a dozen different ways, but there aren't actually any easy ways to say it.
We came into Helen House last week, to try to sort out Imi's pain. We did sort out the pain; she's had a mostly very comfortable and settled week. Alleluia! But, we did that by stopping her feeds. Food or formula going in; unbearable pain and spasm and thrashing around in agony. No food; peace, smiles, calmness.
We tried tiny tasters of food. Instant pain and discomfort.
No food brings peace, but obviously it brings its own complications; Jesus may have survived 40 nights in the desert without food or water, but most of us don't have that constitution.
Imi is managing water (dioralyte). But 100 calories a day isn't sustainable in the long term.
We came home. By choice, last Thursday. With a plan for a big Road Trip to visit her best friend, and a promise of no more travelling after that.
Imi has other plans.
We planned to rest until our trip away; Imi was awake very early on Sunday, and adamant she wanted to come to church. And so we did. And it was painful, and she objected to the sermon (not on theological grounds; she just preferred the worship). She sang a little, hung around for coffee, and I discovered my elbows must have been getting dusty without me noticing.
On Monday, we had a chat (because, even through the fog of pain relief there are still times when she is awake, alert, happy, and communicative). She told me Yes, her body is wearing out. Yes, she's tired. Yes, she knows she doesn't need words to speak to Jesus (eye roll: mother you are so stupid to even question that). Yes she's ready to go with Him.
No, there's nothing she needs to do. No, there's nothing she wants to do. No, she's not sad.
I asked her about our plans for the weekend. No response.
Tuesday, Imi had the most peaceful day she's had for possibly months. Heart rate consistently very very low (for her), calmness and peace, and the carers we had visiting left early as it was so very clear she only wanted to rest with her Mennonite hymns on a loop. SE Samonte playlists on YouTube, for those who want to know what Imi's been listening to much of the time.
Yesterday (Wednesday), Imi woke up with a fever. I say Imi woke up; I mean, I woke up and found Imi with a fever. I don't think she slept on Tuesday night.
And then she started fitting.
We had big long peaceful lovely cuddles, then our nurses came and we swapped over for a bit. Imi wasn't wanting to talk to me, but gave a big yes to having a nurse cuddle before my legs fell off.
A friend came; she and I escaped the house for a short while. Imi started fitting again, I came home, and it became clear that whilst we were making plans to cancel or postpone the road trip, Imi had a different destination in mind.
One GP, three paramedics and an ambulance later, we are back at Helen House. And as we got Imi into bed here, her heart rate settled right down again, and despite the seizures she has been very calm and peaceful once more.
Some soreness last night, resolved by finding a less bright light, rolling her back onto the side she usually dislikes, stopping her dioralyte, and giving her some extra morphine.
It's now 5am; I went downstairs to see her, and she has not stirred from where she was last night.
Calm, peaceful, and clear that her work on earth is done.