The ones where you don't get the kids out of their pyjamas and you lounge around all day... You watch movies and build a cubby house and the kids play all day, while the rain pelts down against the window.
You sip a cup of hot tea, put down your book and smile as the kids turn the chairs into a castle tower... (or hide while they fight).
Lenice wants one of those days.
Like most kids, Dexter and Charlotte are up and yelling for breakfast at an almost-indecent hour! (Dexter doesn't yell words, but he makes his own hungry noises.)
Every day, Lenice wakes up and, she's a Mum. There's usually one child snuggling in her bed and tiny fingers are reaching for her. She steals kisses and cuddles amid the morning breakfast rush. The washing machine gets started and all things Mum take place.
And then, the therapist kicks in.
Once breakfast is done, Dexter is strapped into the standing frame... for about two hours... every day. He needs this to develop muscles and increase bone density.
He needs it because every two year old wants to be standing.
After the two hours, Dexter is taken out of the standing frame and his stretches are done. Everyone hates these... they hurt. If Lenice doesn't do them, she feels terrible guilt - guilt for today and guilt for limiting Dexter's future abilities...
Dexter's a clever kid - don't let his cerebral palsy face and his lack of response fool you! By now, he would know, as soon as he is out of the standing frame, the painful stretches will begin. Dexter's cerebral palsy has caused his hamstrings to tighten, and they need to be stretched out. I honestly think that Dexter knows he needs this done... it is very clear that he does not enjoy the stretches, (he literally grits his teeth and bears it) but he is incredibly patient and forgives Lenice the instant the stretches finish. Andrew does the weekend stretches.
Like many Mums, Lenice sometimes feels that absolute need to 'get out of the house'. While she can enjoy walking around the shops, there's a niggling feeling in the back of her mind. It tugs at her heart strings and worries her. Why?
Dexter's missing out on his therapy.
A day at the park or coffee with a friend might mean there is not enough time to do some of Dexter's other therapy... and so the feelings of guilt and inefficiency return.
There are exercises to teach him to crawl and exercises to teach him to stand... Not being able to see the world around him, Dexter needs to know why he is moving towards something. Lately, he's enjoyed walking (supported) from one person to another person. His pride in himself, when he achieves his goals, is beautiful. He wants to be walking now, he just needs constant support and assistance...
and, we're back to feelings of guilt for not providing therapy!
Dexter can sit now - but needs to be put into position and needs to be watched, for the regular moments he throws himself back to the ground. One of his therapies, is for him to sit with his legs straight out and his leg braces on. He doesn't really enjoy this, as he has to be still - and Dexter is rarely still! Unfortunately, he can't spend the 30 odd minutes watching cartoons or looking at a book.... he can't see either.
He's never really been interested in toys, so usually just sits there.
If it's a really lucky day, he will be sung to or read to or played with (more activities Lenice feels guilty for not providing daily!).
Sometimes, Lenice has to incorporate giving him his morning or afternoon tea while he is in this position, just to encourage him to sit still.
Occasionally, we need to watch Dexter's fingers. His little hands were always in tight little fists, and we worked hard at getting him to loosen his fingers. When he's concentrating, or in pain, those fists tighten again. We're still working on helping him straightening his fingers. (If he has a closed fist, he will have trouble eating, holding things, feeling new objects, reading braille...) Lenice is constantly aware that what she doesn't do today, may restrict him in the future!
Dexter needs to be placed in a kneeling position on a daily basis, learning the basic positioning that comes naturally to most. This is done so he can learn to pull himself up against things. He also has to be taught safe ways of falling and getting from a seated to lying position.
Dexter's making more noise now that his sister is so noisy. He hears some important communication words over and over and over and over and over again... and sometimes (rarely), he uses a word to explain what he wants. While you feel like a fool, saying the words constantly... feeling foolish is better than giving up on him and, very likely, limiting his future abilities.
Dexter can't get himself into or out of bed. He can't get into the highchair or feed himself. He can't get into the bath and sit and play. He can't climb into the car and put himself in his seat. He needs someone to help him.
And so, Lenice doesn't stop. She doesn't get the lazy pyjamas day, because the moment she sits down, she feels guilty about the things she isn't doing.
She's exhausted and scared for the future...
While many of the posts on this blog come from 'Dexter' and are light-hearted or cheeky, sometimes, we'll throw in one about the difficulties of having a child with cerebral palsy - spastic quadriplegia, level 4, who also has a vision impairment.
We are not asking for pity!
We're sharing so we might increase awareness... and you might understand Dexter's life a little more. These posts might be harder to read, and I can imagine a few of Lenice's friends wanting to help out in some way.
So the best way to help - bring her a coffee.
Offer to feed one of the kids.
At her house, offer to sit with the kids while she cooks them dinner.
Stand Dexter up, and try to walk him around the house... or take Charlotte for the same thing.
Sing songs and read books.
There are currently two charts of exercises and daily activities, which Lenice tries to tick off each day. It's a progress chart, I guess.
Lenice once joked that she wanted a star chart for herself... for the days she achieves most, if not all, of the daily exercises, therapies and stretches.
If anyone does, Lenice deserves a star!
More than she realises.