Tuesday, 5 January 2016

Remembering Imi

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.


Alesha said...

Celebrating Imi today. Much love & tight hugs!

Alesha, Doug & Isaac

Alesha said...

Celebrating Imi today. Much love & tight hugs!

Alesha, Doug & Isaac

LorenaHauton said...

Beautiful xxxx

Linda said...

Thank you so much for sharing those beautiful photos of Imi, and sharing her life with us.

You mean there's more??? said...

I met Immy a few times, what I loved about her was her basic mischief, the sense you were in the presence of someone a bit naughty, so full of life.

She was going to be a handful, and disability was not going to be a barrier to that.


Anonymous said...

A beautiful service for a amazing Younge lady , who touched people from the very first time they met her, XXXX

MOM2_4 said...

May you be wrapped in the peace only the LORD can give. Hugs & Prayers!

Kezzie said...

Beautiful Imi!God bless her, she was a wonderful child and is with her maker in Paradise!x

PMDPeter said...

Have been thinking about you all today, especially Imi.
Such a lovely compilation of photo's and video that showed how she loved life.

R said...

A life so very well lived and loved. My thoughts are with all of you tonight.

natasha said...

Beautiful words for a beautiful girl. Xxx

Nich said...

Beautiful words for a beautiful girl. I remember when you first met Imi, I remember a few early pictures. It is so lovely to read the girl/young woman she became.

Nich said...

Beautiful words for a beautiful girl. I remember when you first met Imi, I remember a few early pictures. It is so lovely to read the girl/young woman she became.

Tina said...

Praying that your empty hours are filled with His fullness. That your Sorrow is met with His Joy and that your turmoil of emotions are quelled by His peace.
Lovingly lifting you before His throne of grace. Thank you for sharing Imogen's love and life and faith with us xxxx

pippinsmum said...

I thought of you and prayed for you yesterday, especially at the time when the service was to begin. Not forgetting Imi's other family,
I've followed your blog for a few years now, and I know that Imi was a very special young lady. Thank you for sharing her with us.
There may still be difficult days ahead,as you adjust to life without her,but God will see you through.

enia said...

Thought of yous a lot yesterday. I may not of known Imi personally but I sure know how special and lovely she was. Her very good friend from up north who I have the pleasure of working with lets me know abt her. His face lights up at the mention of Imi. I am not a parent myself so I don't fully know what it is like to see your child go through pain so I can only imagine. But I do know what it is like to love the children I work with and how special they are. Like we say in portuguese "que esteja na gloria de deus"

Pollyward said...

Very moving and beautiful tribute to Imi, thoughts are with you all ❤️❤️❤️��������

Anonymous said...

I'm so sorry, you don't me but I have read your blog for a long time and when I found myself pregnant with a child with profound disabilities last year, it my reading here that had led to me knowing my daughter's life could be filled with joy and it was! she died on the 1st January after living three months of love. I am so sorry for the loss of Imi, your posts showed me how much you loved her and what a full life she lived.

Order and Chaos said...

Hello Tania. I've been reading your blog since Imogen was discussed a few years ago on Mumsnet. I followed a link from there to your blog and was hooked, It's been a pleasure and a joy to see Little Fish become Little Princess and now Amana, likewise it has been a privilege to see Imogen's journey through her often challenging life and to glimpse her personality through your words. If I had to sum up the personality I sae it would be with the word "vibrant", Imi was a remarkable young lady and was so lucky to have had you and her family all wanting the best for her.
The original discussion on Mumsnet seemed to condemn Imogen's Mum for "giving up her child", well I didn't agree with that then and I don't now either. What I saw was a much loved child and people who wanted the very best for her, I am so glad she found you and that you found her. I've loved reading about her life, her engagement with those around her and the sheer joy she showed and which was expressed so well through this blog.
Thank you for sharing her life with us, I thank Imogen for being part of this life and for meeting it head on. Glad she is now at peace and with God.

Many best wishes to you and Amana as you adjust to life without Imi

Elinor said...

Marvellous! And so well put. X


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