Friday, May 28, 2010

Nitty Gritty

Some of my best thoughts for a blog post come about when I am least likely to have a means to write it down. It's usually the shower, driving, changing a diaper.....all places where pen and a paper aren't available. And for whatever reason, whether old age or baby brain, I cannot seem to remember my thoughts in detail without writing them down.

I write everyday. I much prefer a nice pen and thick paper over a keyboard. Many of my blog posts are scratched out on paper prior to making it to the screen. For example, my Measure of Success posts are finished but finding time to type them out is the only delay.

My blog tends to ebb and flow with my daily life. I am sure if you track my blog week by week you could tell the fairly intense weeks from the easier ones. The more intense the less present I am here. The more ease the more frequent I post.

This past week, sticking to my habit, has been intense which explains my absence.

I live with a child who struggles with every life. There are some days that struggle is fairly hidden from the outside world and others when it's not. I am reluctant to write about it here honestly due to the potential for judgement. Not in the online community but in the day to day one. The one where people see my son all the time and really can't see what we face on a regular basis. It is not the harsh kind of judgment (though I've had my share of that), it's more about the minimizing of the struggle based on such a small amount of exposure. It is done in a desire to comfort us when people comment on how normal he seems to them. I totally understand this but yet then walk away struggling with my own doubts of overreacting. His struggles are very real and on a good day difficult.

We never know the whole story until it's our story. A very sweet friend of mine, who is now helping me process through many decisions we are making with our son IS one of those people I said the very same things to.

"Oh", I would say "it's not that bad. It's not that obvious".

I now can imagine what she was thinking in her mind...something like...you have no clue!

I lived in denial for a LONG time and still do depending on the day of the week you ask me. I waffle back and forth just like his behaviors do and his moods and his cognitive ability and adaptive function and his impulsivity and hyperactivity and his social anxiety. I never know what kind of day I have coming. This can wear me out. One day he can read words easily and the next he struggles to get through them....reading them backward for instance.

You may remember this post or this post about the evaluations we had done last summer. We have come a long way sense then in our understanding. We are not sure we agree this is all we are dealing with. At the end of June we will be finding out if we are right.

Why am I writing this? Partly for selfish reasons. It feels good to write it out for me. To express in written form the struggle....to mark it. It's how I process. Secondly, I have chosen here because I have gained unbelievable encouragement from my online community. My hopes are that someone out there reading this won't feel so alone in this walk with special needs and the unknown...which go hand in hand. It is a lonely road parenting a child with social, emotional and adaptive struggles. It limits your world on many levels.

It's the mystery of it that gets me. And not knowing exactly how to help my child be his best. In due time this will change, I have faith for that. This consumes much of my time, thoughts and energy yet I've said very little here about it. I think those days are coming to an end. There is much encouragement to be given and had in sharing our stories and lives. You know, the real nitty gritty not just the pretty.

Now you know where I am when I disappear :o)

6 comments:

Cara said...

I don't have the wisdom or experience to understand all that you're describing, but I'm grateful that you share here! And I'm so glad that there are others online who can serve and encourage you along this path.

Jules said...

Thank you for sharing, Sandi. I will be praying for you and I appreciate that you are real. I want to applaud you for that. Don't ever hide what you are facing because of fear. Satan is victorious when we do that. We need to share our struggles(don't get me wrong, not every single detail should be shared on the internet) but we have to let others know that we understand and that we care. I hope you will find some comfort in knowing that we care.

I love reading your blog! Thanks again for sharing.

~Love and Prayers,
Julie

mamabear said...

Good to hear that the surgery went well!

I hope you get comforting news in June. Beware of the experts to some extent though. I understand how heavy days can be, with so many needs conflicting. Praying for you!

Anonymous said...

Hi Sandi, thank you for writing your experiences. I have not been graced with the ability to write out my feelings/struggles as you do! You have just described clearly the last 10 1/2 years of my life. It is an amazing journey of such growth on the mama's behalf it can almost break you but oh the wisdom this learning brings. Take care of yourself (lesson I have learned along the way) Love ya laurie lee

Sandi said...

Thanks for youe encouragement ladies.

Stacy said...

Love you, friend. I think of you and your guy often and pray, too.

And I get your hesitancy about sharing but your desire *to* share, too. :) (Been there!)

Blessings to you, Sandi~ as you mother your son. God has equipped you for exactly this. He knows what He's doing, He knew you could do it, and do it well. (((Hugs))) to you, friend.