Sweet Disposition

 

Sweet disposition

 

sweet  [swēt]

 

Adjective

having the pleasant taste characteristic of sugar or honey; not salty, sour, or bitter.

 

Noun

used as an affectionate form of address to a person one is very fond of.

 

Synonyms

nice – lovely – pleasant

 

 

dis·po·si·tion [dis-puh-zish-uhn] 

 

Noun

the predominant or prevailing tendency of one’s spirits; natural mental and emotional outlook or mood; characteristic attitude: a girl with a pleasant disposition.

 

 

My nickname for Emlyn is Sweetie-my-heart. It’s the perfect nickname for her. She IS sweet. She IS my heart. And she most certainly does have a Sweet Disposition.

 

It’s something I hear quite regularly from parents of girls with Rett Syndrome – “She has the sweetest spirit”, “She has such a sweet countenance”, “She is just so sweet-natured”.  I also hear “She’s a flirt” and “She’s a terror” and “She certainly knows how to get what she wants” ….but ‘sweetness’ crops up again and again.

 

That really amazes me given the struggles I know these girls face.

 

If something stopped me from speaking, using my hands purposefully, moving with ease and making hundreds of daily independent choices I hardly think ‘sweet’ would be an accurate reflection of my character. Frustrated, enraged, terrified maybe – but sweet? I doubt it.

 

Emlyn just came along – in her eccentric way – and changed the meaning of sweet. She’s re-defined many words for me. Unique. Typical. Special. Brave. Strong. She tore up the dictionary and started from scratch. Actually – she did, once, literally tear up the dictionary.

 

 

Emlyn has especially changed my perception of what beauty looks like. Beauty from within. Sweetness. The radiance that transcends physical attributes. She’s radically altered the way I think, feel and experience life. The things I ‘d historically overlooked – until she shook me up and set me on a better path.

 

 

 

A moment, a love

A dream, a laugh

A kiss, a cry

 

 

A moment – like the one I get every night when I creep into her room and check that ‘one last time’ before I go to bed. When she half smiles in her sleep and it feels like she’s saying ‘that’s my mom, all is safe, all is sound, I am loved’ before she nestles in and really settles for the night.

 

A love – like the explosive BOOM of my heart when I see her coming down the hallway at school and her face is lit up with delight … because she sees me!

 

A dream – like the recurring one in which she says ‘I love you mommy’

 

A laugh – like the contagious giggle that always follows ‘I’ve got a lover-ly bunch of coconuts’ or anything else I sing.

 

A kiss – like in the morning, as I drop her off for school, when I pick her up, when I ask for one, when I’ve soothed a bad breathing episode, after a seizure, if I’m sad, when I cry, when we dance. Hands on either side of my face, looking deeply into my eyes she brings her sweet face close, leans in and shows me love…huge heart squishing love.

 

A cry – like when her lip wobbles and her face comes undone. When she is trying so hard to be brave but sad wins. When she is scared because she lost her balance and knows the pain that could follow. When she can’t stop her hands from disobeying her thoughts. When she feels a seizure closing in on her. When she can’t breath. When she wants to say something but the words are trapped in her mouth.

 

 

 

Stay there

I’ll be comin’ over

 

 

My daughter brings out the warrior in me. She took a lifetime of skills and distilled them into a fire of pure determination. I don’t know what I was meant to be when I grew up, I don’t know what I would have been without her – frankly I don’t care. What I am now is all that matters. Everything I’ve ever done, or known or learnt the hard way is a tool fashioned for this purpose. To give her the best Today. The best Tomorrow I can manage and the best Future possibilities. In that order.

 

 

 

We won’t stop til it’s over

Won’t stop to surrender

 

 

Emlyn’s inspired me to write this blog. She’s inspired me to learn sign language. She’s got me out of myself. She’s motivated me to co-found 2 charities. She’s made me work up the courage to write speeches, research teaching methods, fundraise, knock on doors and lay my heart bare. She’s taught me to look beneath the surface, and then look beneath again for another 4 or 5 layers. She’s taught me when to compromise and when not to. She’s taught me the value of silence. And the value of a voice.

 

If music is the voice of my heart, she taught me a new tune.

 

A tune about a brave little pirate princess, with the heart of a giant and the sweetest disposition.

 

 

A moment, a love

A dream, a laugh

A kiss, a cry

A moment, a love

A dream, a laugh

A kiss, a cry

 

 

Won’t stop to surrender