"From the rising of the sun to the place where it sets, the name of the Lord is to be praised." Psalm 113:3

Friday, June 10, 2011

Firefly Friday. The Fifth. A New Thing to Think About.

It's really funny, you know, these Firefly Friday posts. I'll admit--they take me about a week to recover from writing. They seem to stir up all kinds of feelings and thoughts that I thought I had worked through years ago and make them all fresh again. Then I take the next week to work on getting words down for the next post.

Then, something happens that makes me scrap that post altogether.

Yesterday, we had an appointment with the psychologist. Firefly goes to her about once or twice a month, to work on learning coping skills and techniques, and also to do a social skills group.

Yesterday I went alone. I needed to be re-encouraged. I needed to be told that all of the things we were doing were making a difference, that the time and money we were investing were worth it.

You see, it's been a "sobbing in the closet" kind of week over here. Make that two weeks, maybe even three. I'm not sure what's going on, but we are off, off, off. So I was ready to call an end to all therapy, doctor visits, medications, etc. To give up, really, I think.

And this is how I started the visit. Asking the doctor where we were supposed to be going from here. I think I even made the comment that we had been doing all of these interventions for six years now, and that it should be getting "better". I think I might even have asked when she would be "fixed". (Shame on me. I told you it's been a really rough week. OK, month).

And then there it was. I don't know if maybe I had heard it before, but didn't really HEAR it, or if maybe it was finally time for me to actually be told. Either way, I did hear it this time. "Fixed is probably not a reality for her. She is always going to need some interventions, even into adulthood."

Wow.
Really?
How is that possible?

I even told her then (nothing like a smack of denial to get me through) that I've worked in my "before" life with sensory processing kiddos, with autistic kiddos, and that THEY GET BETTER. How is it possible that the life we are living now is NOT a temporary one? That these battles are not a part of a journey, but maybe the journey's end?

Then there was more. "She does have SPD, but it is one of the most severe cases I have ever seen. There has also got to be a biological / chemical component that explains the other pieces."

Wow.
Really?
How is that possible?

So I've been chewing on that for the past 24 hours, turning it over and over in my brain and saying my prayers. I really thought that there would be an end point. I thought my daughter would one day be magically "fixed", I really did. I even knew better, and I thought it anyway. I'm not sure I can think of the next years being filled the way these have been and staying sane.

But after the pity party I throw for myself, Firefly is next on my list. Because as much as some of our days are struggles for me, I can escape. I can hand the reins over to my husband when he gets home and take a bath (yes, let's be honest, I do often take a glass of wine in there with me. ; ) I can go to a brainless, funny movie with friends, I can vent on the phone.

Firefly lives that way. She can't escape. She is only eight years old and is trapped in her little body with all of those feelings, sensations, adrenaline, chemicals that she can't get away from. She is in overload all the time. No wonder we get what we get with her so often.

OK, so now the tears are starting again, this time for my daughter. So off I go to say more prayers, to a God who understands and cares, to comfort and protect her, and to help me through this new thing to think about.

9 comments:

  1. Don't worry things will get better i know how you feel,God will remain your strength and my prayers are with you.Hope you have a lovly weekend.

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  2. Thank you for sharing your post. Please always remember that WE are not in control- God is. While things may be extremely difficult, God will never give you more than you can handle and He will always be right beside you in your walk on this earth. You and your precious daughter are in our prayers and I have no doubt that God has amazing plans for Firefly!

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  3. Wow, what a sweet name, Firefly. I agree whole heartedly with Faith, and I also hear the pain, frustration and fear in your post. I wish I could give you a hug, because you sound as if you needed one that day/week.

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  4. Hello! Newest follower from the Super Mega 7 Weekend blog hop! Would love for you to stop by and follow back, whenever you get a chance. Have a great week! (:

    Amber
    http://beautifullybellafaith.blogspot.com

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  5. Newest follower from the Sit and Relax Weekend hop. Your children are beautiful. Prayers going up RIGHT NOW for Firefly and for your family. Bless you all.

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  6. Following you with GFC from the workboxgroup. I share your same frustrations, my son is severely ADHD and type 1 diabetic with some mild SPD and I often think about as he grows up it will get better, so we argue a lot. I finally realized he might not and this is his best and God is making my heart tender toward him. It is a struggle everyday but I see improvement within me and the light at the end of what some days seems a very dark tunnel. ((HUGS))

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  7. Bless you! You are an amazing and strong person. Firefly is a blest child to have you for a mother. Praying for her and you as you travel the road God gave you.

    Congrats on your honor, too.

    I'm visiting (and following) from Thankful Thursday.

    I hope your day is full of joy.
    Pamela

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  8. Followed your post from Blog day on the workbox group. What a powerful and honest post. My oldest has SPD issues and we are working through what his adulthood may look like. Praying for you and Firefly.

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  9. Thank you all for your prayers. I haven't been on here checking enough, but I can tell you those prayers have helped. Thanks for thinking of us.

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