Support Groups – Let Their Experience Empower You

It is said that you cannot understand what a person’s experience is, until you’ve walked a mile in their shoes.

This is true as I have recently re-discovered.

I have a son with a mild form of cerebral palsy. It is mild, yes –thank God … but it is still a significant part of our life because it just – is.

It is the worry from his being born too early and too small (3.75 pounds at 28 weeks), the warning that he may have meningitis and will likely die; the relief when he started to develop normally and the meltdown when he started to walk funny.

It has been the tests, the tests, the tests, the internet googling (which you know you shouldn’t do because you will freak yourself out – but you can’t help yourself anyway), the diagnosis.

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Then it just is the process: the appointments with doctors, therapists, specialists; the information, which is overwhelming and frankly, frightening on a primal level. It just is the times when you are told what is going to happen to you (or your child) and in my experience, the list … the list of things he will never be able to do. In those moments you see the future rolled out in front of you and that is just … wow … so overwhelming.

Sometimes, as a parent, you don’t agree with the advise you get, the prognosis or the list … and that’s when you really feel it, like a character in a movie standing alone in a beautiful pasture while the hordes march towards you.

For me, it is described in the poem, “The Love Song of J. Alfred Prufrock” by TS Eliot, ‘And (there is) time yet for a hundred indecisions, and for a hundred visions and revisions, before the taking of a toast and tea.”

If you do as you are told – but your gut doesn’t feel it’s right because you really, really know your child…what do you do? Do you go with your gut or with sincerely offered professional advise by really good people? If you make the wrong decision – the consequences will possibly devastate your child for the rest of his or her life.

But, for me – this has just been the day to day of the life – the wonderful life – Liam and I have together.

Yesterday, though, the women in our post office (small town post office where there is a real person there who can actually speak with you) told me that she had a child in a similar situation. We discussed the issues I listed above and, like me, she went with her gut for the treatment of her son with positive results. And then she said, “No one knows what it’s like if you haven’t been there.”

I don’t know if you have seen the Transformer movies. We watch them over and over and over while Liam builds lego versions of the characters. In the movies, there are moments when the Autobots change from robots to vehicles or visa versa and, in those moments, parts move around dramatically and suddenly CLICK into place.

When she said that to me … it was like five years of pieces, visits, discussions, worry and imagined scenarios CLICKED into place.

THIS is why there are support groups. THIS is why … because there are people who are going through what I have described – many suffering a thousand – a million times worse, alone.

For those who have so far avoided the deep plush chair of diagnosis and the whirlwind of experience that follows, it is still important for you to know that these support groups are vital and so important.

For those who are dealing with a diagnosis – whatever it may be – I understand how difficult and how lonely it is to deal with this without guidance and support of people who have really been there.

To walk a mile in the shoes of someone who has been to the other side of diagnosis … who can empathise with what you are going through because they have been there – who can offer you real advise based on their experience, who can give you hope and/or coping skills is amazing. These are people who have resources, other therapies and who can help you to be brave.

I had a moment of that, just the time it took to speak one sentence – and its’ effects will help me for years.

Please take the time to go through the more than 300 Community Groups listed here in paNOW.com to find help and support if you need it or to support the groups in their various fundraiser events which are often as simple as bake and garage sales or to have resources to offer friends who are going through … this.

For the groups that are supporting people in our community, remember that paNOW.com is for you. Community Group News was created and designed to be a FREE resource to help you, to promote your programs, to get out the information you want people to know. For these groups, remember – you never know who is needing help, who might be reading your news items.

There is strength in experience and in numbers.

Let Community Group News and paNOW.com help.