Every now and again, we fall into a little bit of a slump.
We're in a bit of a slump at the moment.
Lenice is incredible, with her seemingly tireless energy and efficiency.
But in truth... she is exhausted. She is broken. She is scared, and she is lonely.
Loving Dexter is easy.
Being there, 100% of the time and supporting him,
that is more difficult than I can explain.
There is a constant frustration and feeling of inadequacy.
It always feels as though there is something more that we should be doing for him... something else to help him be included... to have more therapy...
more music... more fun.
Talking with him can be difficult, because he doesn't answer back in words.
On your bad days, he can't hug you and tell you he loves you.
He can't say what's wrong, so everything is a guessing game...
and that can get very frustrating.
When he doesn't eat, it's incredibly frustrating... because if he doesn't eat enough, he will lose too much weight. He's on a high calorie diet, because of his cerebral palsy.
As ridiculous as it sounds, he can forget how to chew and swallow.
One week in hospital, without eating solids, has set Dexter back so far, in regards to chewing and swallowing. Its so frustrating.
He has absolutely no muscle tone left in his legs. None. Nothing. Its all gone.
All those horrible hours, sitting on the footpath, watching Dexter struggle to walk, while his hip was almost dislocated... wasted. All those hours of Dexter in his standing frame - over 12 hours a week... wasted.
Dexter is back to zero, in regards to his muscle tone.
That makes us sadder, and more frustrated, than we could ever admit.
That brace... he needs it, but it is making his life so much more difficult.
Each morning, before dawn, Dexter wakes and cries. He is inconsolable. He is in pain, from having his legs held in the one position. He is frustrated, and no doubt confused. And, he can't be held properly. He can't be cuddled. We hurt him when we move him... often.
Hearing Dexter's gut-wrenching sobs is enough to bring anyone to tears... tears of anguish, tears of frustration, tears of misery.
This is Lenice's daily life, at the moment.
Dexter didn't smile for Lenice and Andrew for a few weeks, after that brace was put on.
He was angry at them.
Lenice has a sore wrist, and a sore foot, and a sore back... from lifting and carrying Dexter.
Life with Dexter, and his cerebral palsy is every bad word in the book.
And, it takes incredible strength and energy, to keep smiling and reaching forward.
Lenice has lost friends. So has Andrew.
Lenice and Andrew have become too difficult, for some people.
For some, including Dexter is too difficult.
Actually... including Dexter is easy... just include Lenice and Andrew, and they will make sure Dexter is included.
I have enormous gratitude, for the people who see Dexter, and support Lenice and Andrew. Thank you!
Seeing 'other people', and the support and offers they get because of, and for their children, while Dexter seems to 'miss out', or be dismissed... that hurts.
Having educated professionals express judgments and negative opinions, in regards to the way Lenice is helping Dexter.... or, the limited expectations we see professionals place on Dexter... that makes us angry. And frustrated. And scared.
(Not our Zoe, and not Dexter's preschool teachers.)
And so, we fight harder.
We are broken.
That worry is always there, waiting to flare up and make us hold our breaths in panic. His next CT scan is set for January, 2015.
After 22 months of no chemotherapy... we are finding our smiles, again, slowly.
But, we are broken, and little things can hurt us, a lot.
But, we smile... and hold our heads up.
The tears come later, when no one is watching.
Many of you, who read this, recognise how lucky Dexter is,
to have Lenice as his Mum.
How can you help her? (I know some of you will be thinking that.)
Include Lenice and Andrew.
Drop her around a coffee, one morning, on the way to work.
Send her a snail mail letter.
She can read an email, if you prefer - firstname.lastname@example.org
Know that she is incredibly strong, and tireless in her dedication to Dexter, and his sisters... but that she is just a Mum, who often struggles through her day.
With Andrew working in Sydney, she does most of it alone.
She constantly says she could not keep doing it, without Andrew.
Some days are bad...
Writing about them helps.
*Lenice actually stopped writing on her blog, after someone told her to 'get over it'.
We will be ok, again, in time.