Bits of Time

Yesterday afternoon the temperatures rose just enough for me to bundle up little girl and send her out on the porch with her big brother. We stretch a gate across the stairs so she is as safe as she can be. I sat in my office and listened to the two of them playing and laughing and chasing a ball all around the porch.

 

Every five minutes or so she would call out to me to come. So out I would go, freezing and cold to see whatever it was that I must come see NOW.

 

 

I cherish those moments of laughter because honestly, right now, things for me are a bit rough in our little house on the hill.

 

We are still adjusting to our new norm, and I am probably struggling the hardest with the changes. Lack of sleep, the stress of Mary's seizures, behaviors that drain every ounce of reserve out of me, trying to scratch out minutes to get any work done, keeping house with three cooped up tornadoes, cold weather that won't let up.... I'm feeling a bit fried.

 

It's amazing what sitting and listening to laughter does to the soul.

 

For the hour and a half that they played on the porch, laughing and enjoying each other's company, I felt refreshed. It was a healing balm on my spirit.

 

Despite being in constant contact with her doctor, we are still no closer to decreasing Mary's seizure activity. We are waiting on genetic test results, have an MRI scheduled in the coming weeks, are changing meds and adding as many natural supplements as we can. We have another appointment this afternoon. We are grateful that we have a doctor who will call us on the phone, is actively involved and is trying his hardest to help Mary. We are also grateful to have another doctor who has been a total God-sent who is also actively helping us with our little one. Yes. We have considered alternative options and are in the researching and learning stage.

 



Emotionally, Mary is doing amazingly well. She is bonding to us and is figuring out how to wrap every single person in this family around her little finger!

The meds she is on affect her behavior, moods, sleeping, eating and intestinal track. Poor babe lost her appetite for about 3 weeks. Mealtimes were a nightmare as we desperately need to get her to eat certain foods to keep her system moving, and she rejected everything offered. Thankfully, over the last few days her appetite has returned and we are no longer having epic battles at meal times.

 

She takes her seizures in stride. Every few minutes she has one. But each time she just gets right back up and goes back to whatever it was she was doing. Her seizures are like hitting a pause button. Once over she gets right back on task. She never misses a step.

 

That's not to say that they don't hurt her. They are brutal on her body. She hits the floor, drops against furniture, slams into walls and falls off chairs. But, unless we were to put her in a strait jacket, or kept her in a padded cell, or locked her in a chair all day, there is little we can do to fully protect her. Her seizures are just too fast and unpredictable.

 

 

So we try as hard as we can to keep our dancing, twirling, singing little girl as safe as we can without tying her down.

She's a funny little girl. Her language hasn't quite taken off yet but she is understanding more and more of what we are saying. She has added a few English words to her vocabulary and a bunch of signs to get her point across. She is holding hard to a few of her native words, including a string of cuss words that come in quite handy when things don't quite go her way.

We know that one day we will look back on this season in our lives with fond memories. Until then we are hanging by our toes and finding pleasure in those bits of time that pop up unawares.

Like the laughter of two children swinging on a hammock together and calling for Mama to come and see!