Monday, April 5, 2010

The monster's name

Fred and I are part of a special needs support group at our church that meets once a month. And while we don't meet the traditional definition of having a special needs child, we have found great comfort and encouragement from the people in this group.

We have a lot of the same fears and frustrations. "I can't leave my child with just anybody", or "people just don't get it". We talk about the stress, the anger, and the sadness. But we also rejoice over triumphs too. We may not fit perfectly into this group, but they have made us feel welcome and have even told us they are blown away by what we do.

I feel the same way about them.

Last meeting there was a newcomer. And she didn't meet the traditional definition either. In fact, she didn't even know what was wrong with her child. All she knew was that since birth, her daughter (now 3 - I'll call her G) has been covered in an almost head-to-toe rash. G itches so bad that she bleeds. She cries from the pain and discomfort, and although her Mom has taken G to 18 different doctors, and has a tub full of creams and ointments; there has been no relief for and no diagnosis. Little G only sleeps a few hours a night because of the pain. And of course, the same goes for her Mom.

As this woman spoke, she sounded a lot like I probably did right after Elise was diagnosed. Shaky. On the edge. Angry. About to lose all control and had no idea how to stop it. My heart ached for this woman. She looked so completely beaten down by life. The monster in her life is winning.

We too have a monster in our life. It makes us angry. It makes us sad. And it makes us tired. It interrupts our sleep and disrupts our life. It eats away at our time and energy; even our money. It can make even the simplest illness an emergency. It messes with marriages, strains relationships, and causes friends to drift away. It's ugly and mean and no matter how hard I try, I cannot defeat it, only keep it at bay.

But you know what? I think of this woman and have never been so thankful to know our monster's name.


  1. Very well said...bless her heart. I hope she finds some answers soon!

  2. That would be really hard. And how great that you've found such a wonderful support group.

  3. beautifully written. I cannot imagine.

  4. My heart goes out to this woman. I can't imagine her pain. I pray an answer will be found.

  5. Oh my goodness, I feel for that little girl and her parents. Your post was a reminder to count my blessings.

  6. so true...i hope G and her mother get answers & support from your group.

  7. Joanne: Wow. Your writing on this is beautiful. I can't imagine what that other mother is feeling, but how you've adopted her into the support group and are helping her talk and vent about the monster in her life....Inspirational and admirable. It's amazing what perspective we can all share to help put our own monsters into context. And it's just as amazing as those monster evolve through time and get less terrifying and burdensome. Taming them is the name of the game, for now.

  8. I sure hope this woman finds a "name" for her monster. That is horrible...poor mom and her daughter.

    Beautifully written, as always, Joanne.

    Have a great day!

  9. Yes My heart goes out to this woman as well . I mean that must be agony . at least we all know what we are dealing with and she really does nt . I hope she gets some answers soon . God bless her and she and her child will be in my prayers .


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