Friday, July 29, 2011

Twice As Good

Spent the evening with these gals. I don't know if everyone has a group like this. Tell me, you SN families, do you?

This one was formed rather organically, I think. Actually, they were around before Luke and Caleb were ever born. But I didn't know them until the Seizure Monster moved into our house. One of our early intervention home therapists told me about another mom in the the area that she thought I would like to talk to.

I still remember that first phone call I made to Robyn (she's the one on the far left in the picture). Nervously, I dialed her number. What should I say? Do I tell her the whole story? Will she even care to know about my story? I mean she probably has her own problems to worry about...she is a special needs mom. ::Ring. Ring::

I don't know exactly how the conversation started, but I know it included something like "This is Kristi Lundgren. My son Luke is having seizures."

And then, on the other end of line....a friend. We'd never met. Never talked before. But I knew immediately this was my friend. "My son was also diagnosed with Infantile Spasms", she said.
Suddenly, I felt such peace come over me. Another warrior. Another parent who had been in my shoes.

Do you know how lonely it can be to be the parent of special needs child?

Somedays.....pretty darn lonely. Especially back then. You can't really drop your son off in the church nursery when he's having 120 seizures a day. MOPS? Are you kidding? Playdates? Probably not.

My new friend invited me to hang out with her and some of her other mom friends who have kids with special needs. So I did. (wrote about it here.)

And somehow over the last year and a half they've become like family to me. We all live crazy busy lives (what with doctors appointments, therapy, fundraisers, chasing after our typical kiddos, etc etc) we don't often get the chance to actually get together in person. But we text. And call. And facebook.
It just feels like home when we're together. Something about fighting the same battle makes you tighter than tight, ya know what I mean? All our kids are different. Different diagnoses. Different needs. Different abilities. But we all know what it's like to have a child who challenges us to be the kind of parent we never thought we could be. We know how to fight. How to pray. How to advocate. How to handle incompetent doctors and nurses. How to appreciate the professionals who are really good at what they do. We know how to celebrate everyday miracles. We know how to gracefully handle the stares of strangers and how to answer their awkward questions. We know there is always more to learn. We know God sometimes DOES give us more than we can handle...but ALWAYS gives us the grace and the friends we need to make it through.

I love these ladies!!

And will miss them soo much when we move.

Love these lyrics by Sara Groves: "Every burden I have carried, every joy, it's understood. Life with you is half as hard...and twice as good."

Thank you for so many great memories and for being there for me when I needed you most!!

1 comment:

  1. You know, I've said this a thousand times, maybe too many times, but I think it can never be said enough times.

    Infantile Spasms is the single most under-estimated, under-appreciated, under-discussed and definitely under-the-radar medical conditions in the history of childhood medical conditions.

    And I hate the name more than anything else.

    It is not a fair name. It does not bring with it any emotional impact WHATSOEVER. None. Zippo. Zilch.

    Whatever happened with Bennett, my son, happened. Can't change it. I have to love him and accept him for who he is.

    But those seizures, those Infantile Spasms...more than the Tumor, or any of the other things, those were that which I have never, EVER, been able to get over. They still just make me angry. Even though the surgery stopped them, the fact that they occurred for 6+ months robbed that boy of years. There is a correlative equation in there somewhere, for ALL kids, of time spent seizing versus years lost of cognitive skills. There HAS to be. Too much consistent evidence I have seen across the board in ALL my fellow IS parents and sons and daughters.

    And THAT alone is worth more people in the medical community caring more about it.

    Sorry for the blog-jacking. It's my one 'topic' that I always can't stay out of. It's my 'Niagara Falls'...

    Hope Luke is having a blast this weekend!!!



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