Wednesday, March 11, 2009

Rough Day

Today’s been a rough day. I’m not sure how to express it really. Perhaps it’s just the timing? Mantha’s been sick the last few days. She caught the same virus the rest of us have had. She had me a bit worried on Saturday night when, in addition to being hit head on with the virus, she had one of her seizure episodes. Nobody saw the actual seizure (we rarely do!) but the aftermath is always scary for me. We play the waiting game. Her eyes get dilated, she loses all color in her face and she becomes extremely sleepy. We believe that being overtired, losing a tooth and especially being sick contributed to this seizure episode.

It didn’t take her very long to recover (that’s a good thing) and she already had a routine appointment set up with her neurologist. But this seizure was the second in 4 months. It seems like the seizures are breaking through more often. And these are just the ones we notice, and are not necessarily the ones that we don’t see.

Today was the routine appointment. I had an unsettled feeling in my spirit. I couldn’t stop thinking about us having an accident on the way to the appointment. I prayed frequently this morning and in the van. We did not have an accident but there was trouble on the hwy. The HWY that we need to take was closed at the exit one exit past where we need to exit. It was closed due to an “emergency fire”. That meant traffic was backed up. Horribly backed up. It took 20 minutes to get from the Interstate to the HWY exit. It should take 3-5 minutes! By God’s grace we were only 10 minutes or so late for the appointment. I would have called ahead but (remember I said it was a rough day) my cell phone was *dead*. The doctor’s office was understanding and we were still able to see the doctor.

The girls were in the room with us. I know they heard the conversation but I don’t think they really heard it. I’m glad. Though I did hear it, it took me several hours to process it.

Mantha has maxed out the current medication. Her blood level indicates that it is the right range for her weight. Because we suspect that overtiredness due to excitement is a trigger factor and because it was only two seizures 3 months apart she was hesitant to change medications. We may have to consider adding another medication .

But the hard part. The rough part. Just a few simple words towards the end of the appointment. The doctor was filling out the paper that we take to the receptionist for setting up whatever we need and/or the next appointment. She said, “We can’t talk about being seizure free.” Seizure free. 1 ½ years ago we came really close to being able to talk about seizure free. We had gone 8 or 9 months with no seizures. The doctor said that if she could go one year without seizures, we would start weaning her off the meds. Now, we’re averaging one to two seizures in a four month period.

I know things could be worse.This is really such a small thing in the big scheme of things.And if I am truly honest, today wasn’t nearly as rough as it could have been. I kept feeling the tug to pray. I believe the “unsettling feeling” came from the Lord so that I would lean on Him.I remember setting down the dead cell phone and praying that I would not need it and realized that I would have to be dependent on the Lord and the thought even crossed my mind that I was stepping out in faith and why should it be so hard. People did this all the time before cell phones were invented!

I didn’t realize what an emotional day this had been for me until after dinner.The girls were listening to a CD of hymns while they cleaned up the kitchen.I heard snatches of “How Firm a Foundation” and I just started to cry.It was in that moment, hearing the words to that hymn that I realized I was leaning on my Foundation today and He “upheld me in His Hand” and he “did not forsake me”.He gave me the grace that I needed to deal with bad traffic, grumpy drivers, backed up traffic and facing again the reality that my daughter is different.But it’s all good.He’s good.He’s my rock and my strength and fortress.He’s my firm foundation and He has designed even this dross of her seizure disorder to refine us.Once again we are living in the truth of Romans 8:28.We have clung to that verse through open heart surgeries and we continue to cling to that verse in the “little things."

Here is a link to the hymn if you are unfamiliar with it:
How Firm a Foundation

1 comment:

  1. I wish I was near enough to give you a big hug! Praying for dear sweet Mantha girl!!