Sunday, March 10, 2013

My Maddie is Tough. Tougher than her mom.

Some days are really hard.

Today is one of those. I felt crummy and stayed in bed most of the day. Maddie felt crummy and stayed in bed too. The difference? I know that my aches and pains and allergies will quickly go away. Maddie's pains never leave her. They just abate enough to get through the day. But the last couple of days Maddie has been in constant pain.

And it's spring break. Maddie's peers are vacationing all over, on highs and lows from cheerleader tryouts and doing teenager things. Maddie is curled up in a fetal position in her bed with tears coursing down her face in pain, thankful that it's spring break because she won't miss another day of instruction at school. nice.

Today I'm not taking it well.

Over the last 8 months, Maddie has had a new pain. It's manifested in her ear. It's her right ear this time. It's not infected, she is not running a fever, but it's inflamed and swollen. We have tried everything we know to do, but nothing helps. My mother-in-law who also has a host of auto-immune issues says this happens to her as well.  If Maddie presses just under the ear on her neck, she can hear better, but it doesn't take away the pain.

We see Maddie's immunologist on Tuesday and the rhumetologist at the end of the month, I'm really hoping that maybe we can figure something out.

I'm scared though. A couple of weeks ago at her nephrology appointment, the doctor said that he thought her IgA was active due to the episodes of swelling. Given that most auto-immune diseases don't manifest until puberty, I'm beginning to truly dread Maddie growing up. She turns 13 in May.

So, while I don't want to be Debbie Downer on your spring break, take a moment and be thankful for healthy bodies and healthy kids. As I watched facebook as families were sending off their kids for trips, I wondered about how different our raising Maddie would have been if she had been healthy. By 7th grade, I had been to week-long camps a number of years and vacationed with others. Maddie can't, and for the first time I am really truly struggling with this. I guess because we are now to years that I remember really well. These trips that she is missing are trips that were defining ones in my life. I pray that the fact that she is missing them is not defining for her.

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