Meaning « Terrible Palsy

Meaning

September 4, 2007 at 8:14 pm | In Bits & Pieces | 28 Comments

The universe doesn’t end in a bang

It ends in a whimper.

And so, I think, may this blog.

Mel’s comment on my previous post has been going around and around in my brain. So has another person’s recent comment to me – she told me that each family has their own agenda.

Mel and the other lady is right. There is nothing more competitive then the world of parenting, especially special needs parenting. There are things that feed the competitiveness – at least where we live – we compete against each other for funding. It’s hard when you see another family get funding when you didn’t, particularly when you perceive that child’s limitations to be less then your own child’s. I do it. I’m sure that other people would put their hand up for this too in the safety of anonymity.

I recently confided to a parent whose child I thought was at a similar severity to Moo, my personal thoughts in relation to the privacy post I wrote. The response was that it (being my major concern) wasn’t going to be an issue for her child as he would be toilet trained. It was then implied that Moo wasn’t toilet trained through either some laziness on my part or lack of intelligence on his part. I felt very small after our conversation. I felt distraught that I had made the effort to confide something I was in personal turmoil about only to be criticized.

I am thankful though to another parent who through this blog put me on the right path ; )

I no longer know where I fit in anymore. I have actually unsubscribed from the support groups as it was doing my head in. I felt like an outsider in relation to virtual friendships. I felt like I was back in high school wondering why people don’t like me enough to answer my posts. But it isn’t just the web. Friends that I have known for years seem like distant strangers. Colleagues that I have worked with have a difficult time in understanding what my life is like. Even in the security of my own home I feel unappreciated and sometimes unloved. I turned to this blog as an outlet to explain my thoughts and my life. Some of you know who I actually am. All of you now have the ability to find out my real name after I was recently outed.

Today, I read this. I do love this blog. And I like you, are horrified by the story. But then, while I was reading it, I felt again like I was being criticized (for not raising copious amounts of funds to take Moo to China for stem cell treatments). I think it oversimplifies what options there are for parents. It overlooks the struggle that parents face between trying to “cure” their child and accepting who s/he is, disabilty and all. Stem cells aren’t the answer for everyone. ABR isn’t the answer for everyone. Conductive Education isn’t the answer. Botox isn’t the answer.

Is there actually one answer for all?

So, while you read this jumbled post, you may begin to understand why I need to take a break. Need to re-group. Need to experience life itself instead of reading about it. No virtual life. A real life where I can actually say what is in my head instead of writing it.

A real life where hopefully, someone will actually understand.

28 Comments »

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Jacqui, whilst I don’t live your world, I can sort of understand what you are going through…. even if it is a tiny bit.

Not so long ago, one of Tom;s therapists made a comment that hurt… really hurt. And because I was so hurt, I spent a whole week worrying and not enjoying my precious Tom. I am sure that even though that happened, it will probably happen again and again.

Sometimes I wish I could just live in my own little world with him – enjoy him and teach him, and mother him, love him and just be there for him. But I feel like I live day-to-day…. not even knowing where I am going (a bit like this post).

So, take the time……… take as much as you need and find you and find where you are going.

And if you are ever coming down this way (Sydney) or we are coming up your way – I would love to meet you and Moo (and the rest of your family of course). I just feel that while I don’t know you, I do know you and I see you as one of my friends.

Big hugs,
Jodi
(and Thomas)
xxxxxxxxxxx

Comment by Jodi and Thomas Devine — September 4, 2007 #

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I agree that sometimes these support groups do leave you feeling overwhelmed (too much information) and they make me wonder if I’m doing enough for my child. Being an ABR Mum myself I know how much of a committment this is, and even though there is so much talk about Stem cells, HBOT etc etc, hey… we can’t do it all. I doubt myself sometimes and I think it is because I am on the web too much. So, a break will probably be good. Know in yourself that you are doing your best for Moo. I also feel “rejected” at times when no-one answers my posts… so I seldom post. I understand how you feel and I guess it is because we are also critical of ourselves and therefore feel judged by others. Being a mother is difficult but one of a disabled child is so much more challenging and at times lonely and I think you do a wonderful job. I also would miss this blog if you end it as I enjoy your writing and relate to so much of it.. but understand your need to take a spell. Hope to read one of your witty blogs again soon and maybe we’ll catch up at Avoca sometime. Cheers

Comment by Jodie — September 4, 2007 #

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There are no easy answers. Be gentle with yourself. Take care.

Comment by Janet — September 5, 2007 #

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I know what you mean. Often, I so desperately want to find answers or alternative treatments, etc. that I tend to turn to the internet for help. I’ve recently realized that the answers are most often not found there and sometimes I do feel the “competitiveness” of parenting even among support groups. Therefore, I have chosen not to rely on the support groups for any kind of emotional support but do check in infrequently to watch for ideas, alternative treatments etc.

Jacqui, I love reading your blog. You do a great job of journaling the ups and downs of life. You are someone I look up to. I think you are doing a great job with Moo and your other children. I hope you continue to give updates but totally understand that life is for living and its important to take care of that first. Best wishes to you and your family.

Comment by Mel — September 5, 2007 #

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I wish I could say something more than this but I know nothing I say would be “right” because truly there is no such thing. So I will just say take some time for you, time to heal and come back if that’s what’s right for you and your family. Your contribution to the blogosphere is and has been very welcome. Love, Emma xx

Comment by Emma — September 5, 2007 #

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Jacqui,

I’m sorry you are feeling the way you are. Please be kind to yourself. On a very personal note, our struggles may be different but your blog and how you portray your life with such honesty gives so much. Please don’t underestamate the positive impact you have on some of us in the competitive parenting world. Maybe there isn’t meant to be any simple answers in this journey – just complex questions, because the more we question, the more we know.

Comment by littlema — September 5, 2007 #

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Hi…
I did not mean to make you feel as if you’re not doing enough because you did not take your child to China. I’m sorry if I made you feel even a little like that. I love your blog and Moo too!

You’re a terrific writer and have on more than one occasion made me tear up, not with pity, but with the love and acceptance you have for Moo, all your kids and the disability community.

The article does come down hard on parents who take the lives of children with disabilities. There is always an option to killing a child. It’s not about you and other parents who continue to walk the walk, every single day, despite a system that punishes you for loving and caring for your child.

I too am the parent of a child with disabilities. She’s 33 this year and i remember the isolation, alienation. I know it’s hard.

But, to use the most extreme option death… before considering china or giving the child up… it’s wrong.

I love ya… stay strong. Peace.
Cilla, aka big noise

Comment by Cilla.. aka big noise — September 5, 2007 #

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Hey, i will miss your blog – but go for it and take some time off. I know exactly how you feel. i always feel guilty for not doing enough therapy, and equally guilty for doing too much. We took a break this year, focussing on the first year at big school, and are now ready to start again. But one decision i have made is to be a mum rather than a therapist – we do some, but when it fits into our life. We have decided to be a family first and foremost. I will definately feel guilty about that – now and in the future – but i think all parents feel they got things wrong. And even if we are perfect, it is the nature of the beast of independence and generational conflicts that our kids will complain anyway. Or so i tell myself.
Take some time off, but please consider coming back. You are a good writer and a good mother, condensing many of our fears and feelings and struggles into beautiful words. You stand out amongst all the drivel blogs – so please please don’t leave altogether if you can.
Love – and stay soft!
Heike

Comment by Heike — September 5, 2007 #

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Hi Jacqui,

I’m very sorry to hear that you are feeling this way. I can tell you that your blog has been a wonderful place for me to come. Thank you for sharing so much of your life with Moo and your family generally, your feelings and your thoughts. Knowing that you are thinking about some of the same issues I have been fretting/thinking/wondering about has been of immense comfort to me, even though our experiences are in many ways different. Funnily enough, knowing that you are not far away geographically has also been very comforting, although I have not met you anymore than I have met bloggers from the other side of the world.

I hope you regain your confidence in yourself to make the right choices at the right times. No one else has the right to take that away from you, and it seems clear from your well-considered posts that you have done more than your best.

Best wishes for all of it,

Pen

Comment by Pen — September 5, 2007 #

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I am so sorry you feel this way. The online world can sometimes make you feel worse than the real life world. Sometimes, too, the masses of information we can access can also contribute to feelings of inadequacy.
Remember that no-one can make you feel inferior without your consent. (quote from someone famous….???) You are doing a great job, not just with Moo, not just with your whole family, but with people like me, who are learning about life walking in someone else’s shoes.
Best wishes from one Mater prem mum to another.

Comment by Jenny — September 5, 2007 #

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It’s hard when you can’t seem to find the understanding you need anywhere. I hope that you’ll be able to say that you’ve found some soon.

Be well!

Comment by NTE — September 6, 2007 #

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I am so sorry you have been feeling alone and misunderstood. I have really enjoyed reading your blog and cannot tell you how completely adorable your children are. Your family seems so loving and supportive and HAPPY. I am sure you, at times, are overwhelmed or unappreciated. Let me tell you this – there is no way your children would be as happy as they are if you weren’t a terrific mommy. My husband recently was diganosed with cancer and I really thought about what we should be doing differently to make the most of whatever time we have left. The answer was: nothing. You have to know that there are always more treatments, more options to try, but at what price to the wonderful life you have built. It sounds to me like your children are lucky to have you as their mom (and your husband is lucky to have you as his wife).

If you are not finding benefit in what you are doing (i.e., blogging) then you definitely should take a break. Life is just too short (and our little monkeys grow up too fast) to waste anytime in negative, unsupportive situations. I wish you all the best!

Comment by Ami — September 6, 2007 #

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I will miss reading about you and your lovely boys – you are a clever and thoughtful writer as well as a good mother. Take good care of yourself.

Comment by llp — September 6, 2007 #

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Take good care!

Hugs,
Heesun

Comment by Heesun — September 6, 2007 #

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Hi Jacqui
Found you today through Glenda Watson-Hyatt’s blog. Enjoyed a rushed read and will curl up with it later for a slower read.
Only you know if you need a break from blogging. I can’t say better than Janet did earlier: “There are no easy answers. Be gentle with yourself. Take care.”
But I can tell you there are people out here who will be coming back to see how you are getting on and take inspiration in their own lives from what you do and write.
Norman

Comment by Norman — September 7, 2007 #

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Hi Jacqui

So I did as I said I would: like curling up with a good book, I’ve spent most of this evening curled up on the sofa with a laptop and your blog.

And now I want to urge you, if you can find it in yourself to do so, keep writing your wonderful, insightful and inspirational blog.

Otherwise, if you don’t, what’s the point in my recommending it to every parent I know?

Thanks, too, to Glenda (whom I met in person in Vancouver in July), for introducing us.

Best wishes to you and your family.

Norman

Comment by Norman — September 7, 2007 #

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The line that gets me through much of the competitive parenting nonsense is this: “We’re raising our children, not racing them.” Just raise your kid the best way you know how–that’s hard enough without worrying about who’s keeping score.

It’s healthy to take a blog break if you need it. Enjoy, and I agree with Janet too: be gentle with yourself, and take care.

Comment by Penny — September 7, 2007 #

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Jacqui,
I love your blog and will be so sad to see you go. Whatever will I do without Moo, my future son-in-law?

I think I understand your feelings, and where you are coming from on this. It can be so terribly overwhelming, and there absolutely is NO RIGHT ANSWER. I frequently have to take a step back to remind myself, whenever I get a particularly off-base comment or email, that I don’t know these people and they don’t know me.

I do know that I am way more critical of myself than others are of me, and maybe you are too. Seems to me, from my point-of-view that you are doing a kick-ass job as Moo’s mom, and I have found myself wishing to be more like you. You inspire me. I hope that you are not judging yourself too harshly.

Much love.

Comment by Billie — September 7, 2007 #

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What will I do without you and Moo to guide the way and to make me see the silver lining?

I’m selfish. I NEED you. Hope your break is a short one!

Comment by Lisa — September 7, 2007 #

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I’ve been silently following your blog for some time, after finding it through Holland & Eden’s site. I’ve often read in admiration of your strength and courage. Your loive for your sons shines through in your writing.

I hope you’ll be back soon. I love to read of Moo’s accomplishments, and your fresh view of life. Best wishes to you and yours.

Comment by sarah — September 8, 2007 #

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Jacqui-
I will miss you and your family. I am sorry for how you are feeling and won’t even attempt to say that I understand. I will just say that, I am so hopng you find what you need for you and your family. I will miss stories of Moo, as he reminds me so much of my son Daniel. I read your blog frequently in hopes of finding out some new information that I hadn’t found yet to try.
Best of luck to you and your family. I will check often to see if you are back.
You and your family are in our thoughts and prayers.

Melanie, Lonnie & Daniel Spranger

Comment by Melanie — September 8, 2007 #

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Jacqui – I will truly miss your blog. You say all those things I wish I could express. If fact this post says many of the same things I have been feeling lately as I try to work through the therapies and equipment for my daughter. You have truly been such an inspiration to me.
Jacolyn and Grace

Comment by Jacolyn — September 9, 2007 #

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Hi Jacqui,

I wrote you a more indepth comment on cp moms. I am sorry, if in that group I did not answer any of your posts. I totally understand needing a break from blogging. I am sorry to hear you were outed – yikes! I am sorry to hear you have been encountering some insensitive people – that sucks. I think that Moo will do what Moo will do when he does it. I am sure that Sumo’s progress in the potty training realm will have a great effect on his motivation as well. It’s not a race or a competition – which you are well aware. I don’t think you are doing anything wrong by Moo, on the contrary, everything right. At the end of the day he is a happy, motivated, outgoing, little boy. That is a wonderful accomplishment on your part! (and hubby)

I feel really bad that you are feeling so alienated. I wish we lived closer because I know we would be good friends. You are an amazing mom and great person. I hope you know how much you have taught me through your blog and how much I felt that there was at least one other person out there who understood what I was living.

I totally support you taking a break and taking care of you.

Lots of love and hugs,
Kathryn

Comment by Kathryn — September 10, 2007 #

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I’m so sorry you’re going through a rough patch. Take some time to baby yourself if you can (yeah, easier said than done).

We’ll still be here.

Comment by Attila the Mom — September 10, 2007 #

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Hi.
I love reading your blog, but understand that if you need to take some time off then that is what you have to do.
I know that things are probably stretched for you right now, but I hope that if you want to, you can find somebody impartial and nonjudgemental to talk to. Perhaps unburdening yourself on a counsellor or somebody else might just take some of that weight off of your shoulders. You are one strong lady.
For me, your blog has given me so much insight into a world that I could not hope to imagine with any accuracy by myself. You have also shown me that there is also light and joy in the lives of families where a child has CP, which is wonderful.
Thank-you for the effort you have put into this blog. We all appreciate it.

Comment by A Girl — September 11, 2007 #

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Jacqui- I wish you the best. If a break from the this virtual world is what you need, then you should take it. A week, a month, or forever, you need to decide what makes your life better and easier. If this isn’t it, then let it go.

I know what you’re saying about the competitiveness of special needs parenting, and I totally agree. You can read more of my thoughts over at my blog, since my comments started getting the best of me. All you need to know is that you are a wonderful mom. Take time away from us here – just words on a screen – and let your children – flesh and blood and dimples and curls -remind you of that. You are doing the best you can, and that’s all they need.

Comment by Mete — September 11, 2007 #

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Don’t forget to go to a spa and get a massage and manicure….I think a mini trip or a big trip would be good too.

Comment by Janette — September 12, 2007 #

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I am the single mother of three … one has an autistic spectrum disorder. I have returned to school (college) as a “non-traditional college student” (that’s what they call us anyway). I love doing something for me that creates new passions in me as I learn about he world outside of my own world of parenting and second-guessing.
Just a random thought. I have learned as much about myself as I have the world since I returned to school. One would think … “it’s just one more thing … I dont have the time ….” My point is, I have found something I am passionate about that gives some intermittent feedback and good feelings. I treasure each “good grade” I get because I know statistically I shouldn’t be an “A” student. Hope something I have said someday means something. God bless you.

Comment by lindamariet — October 2, 2007 #

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