This is a big one. There is always guilt. There is always something else we should be doing. We often have the feeling we are letting Dexter down, in some way.
If we focus on one area of his therapy, another area is missed. It's a never ending cycle and the guilt does sneak up on you. We are learning that there are times we just need to let things go, and to focus on what we can do, instead of worrying about what we aren't doing.
Dexter's mother carries guilt that she didn't hold Dexter inside her for long enough. If Dexter had been born later a few weeks later, he may have been stronger; his tiny lungs may have been ready for him to breathe; the brain damage may not have happened. We know and believe that Dexter's mum did nothing wrong. She is incredible. She's getting stronger at fighting the guilt she carries, but it will always be there. This is partly what drives her to provide him with everything he needs. Sometimes, you can't rationalise with guilt.
There's guilt when Dexter has a pain, and we didn't notice it.
There's guilt when we don't watch him for a few moments and he bangs his head on furniture. Dexter is getting fast with his movements and this happens sometimes. He knows to stay still, but the initial pain is still there. And, if he cries.... guilt.
We can't tell when he has a stomach ache or a headache or an earache or a sore throat. We still try to make him eat and drink. And then, he might get sick. Guilt.
We don't always know if he is hot or cold... guilt.
We strongly believe in early intervention, but we don't always do his therapies.
We might forget to concentrate on his vision exercises. Guilt.
We might not have time to put him in his walker. Guilt.
We might not want to go to the effort of undoing his wheelchair buckles, lifting him up and putting him on the park swings. Guilt.
And then, if we don't have enough energy to play with the Noisy Sisters... Guilt.
When someone is non-verbal and they cannot walk, they are totally dependent on you. This is a huge responsibility and there are definitely times when you let them down. We often feel as though we are letting Dexter down.
After five years, we are learning what to focus on.
We are learning what is important and what can wait for a later time.
We are learning to prioritise, and that means, we are also learning to look after ourselves.
Living with a child who is totally dependent on you is not easy. It's exhausting.
And, guilt is always there. We are not complaining, we are just sharing our lives; the good, the bad and the ugly.
Life with severe quadriplegic cerebral palsy is tough.
Walking Until It Hurts
How a Dollar Looks, for Dexter
Brain Damage – Finding Out
Why Lifting Me Up Feels Like Letting Me Down
They Want Octopus Arms
Little Fingers Reaching
Something to Say But No Words to Say It
And Then, They Whispered about Me
Dexter's Cerebral Palsy
Who is Dexter?
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