Friday, December 12, 2008

Lost

This post is about me.

I am feeling lost. Ever since we got the news last month that Matthew will need more surgery so soon after the last one, I have been looking for support and for some reason it feels elusive to me. I have turned to my friends, and they are fantastic. They listen, they say wonderful things, they help me up... but I need something else. Some one to whine too about crappy AFO fitting appointments. About tips for physio. About how to deal with the questions he asks me.

I've tried the clubfoot groups but because Matthew's foot is atypical, the problems he faces are so vastly different that I don't fit there.

I turned to blogging publicly and have found some wonderful special needs kids sites that have great support, but those people are experiencing far more difficulties then I am so I feel like I can't go there. Feels like what we go through is so small and uneventful compared to those facing such monumental difficulties. I suppose Matthew isn't really a special needs kinda kid. Just a kid with a lot of specialist appointments... and extra care...

Not sure where I fit.
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5 comments:

Sara said...

HUGS to you! I wish I could be of more help to you, but I know you need someone who you can relate to with all this. Keep looking... there has to be someone out there that has the same problem. And they are probably looking for someone like you too. Until then, I am always here for you my friend. Call me anytime and tell me anything... I will always listen.

December 12, 2008 at 11:20 AM
Jennifer said...

I agree with Sara! Wish I could be more for you. {hug}

December 12, 2008 at 3:47 PM
Tara Bennett said...

I completely understand. All my daughter's friends at physical therapy and especially at horse therapy are so much worse off. I almost feel guilty for having her and seeking support from the other moms and dads. But I think what it really is about is just going through something that is 'outside of the norm' regardless of exactly what that entails - it's hard. Yesterday I cried and cried and cried because we were looking through photos of wheelchairs. I've known she'll be in a wheelchair for a long time, but the reality of it just hit me. Then I went to a blog where the child is going through surgery and chemo for cancer and will most likely not survive. And I tried convincing myself that the wheelchair wasn't a big deal in comparison. Then I realized, yes it is a big deal. To me. Even if I had another child who was going through chemo and possibly dying, the wheelchair would be a big deal.

Surgery is always significant. Chloe had eye surgery last year, just outpatient. And with all the things we've been through, that was probably one of the hardest things for me. Especially to see her in pain and to sign those papers with the anesthesiologist.

I hope you can find support and be uplfited through kidz. When is his surgery? If you would allow me, I would like to send an outpouring of love your way. You will be amazed at how many people will support and care for you. Let me know if you're ok with this. I don't know if you saw, but I asked people to support a little boy, Dallyn, who is having surgery in January. So many people have sent things for Dallyn and his family to show their love and support. I can't wait to give them the package. I know it will help.

If you are willing to let me do this, I'd just also like a picture of your son and a little more info on his diagnosis and why he needs the surgery, just to give people a sense of who he is and what he (and you) have been through. It makes it more personal for everyone involved.

Please know that you are not alone, and so many people support you and your son and understand how frustrating and hard and saddening your situation is - maybe not exactly, but to some degree they get it.

Sorry for rambling, this is just my thing, I can't help it.

Love to you!

December 15, 2008 at 11:27 PM
Jo-Ann said...

Sara and Jenn

I can only tell you that your friendships means so much to me. I do feel I can tell you anything, whine, complain and more importantly, laugh with you. Friendships are what make the world go round, and you guys keep mine spinning. :)

December 16, 2008 at 9:32 PM
Chikki said...

You are right not everyone can relate, because Matthew's problem is unique. But you are doing your best to find folks who have SOMETHING in common (i.e, clubfoot, etc). I'm sure you've learned a lot from your research. Also, you will be a valuable resource to those who in the future may have Matthew's issues.

January 3, 2009 at 10:44 PM

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