Tuesday, January 9, 2018

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!




 
 
 
 

4 comments:

  1. Thank you for sharing your story. I'm so grateful to know you, your family, and the Lord through your writing. I am praying for Mary's health and for you. When we are weak, He is very strong.
    Much love, Kelly

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  2. I am so thankful that Mary has you - and that you have Mary. And I fervently hope that the upcoming appointments, tests, and likely meds will make a huge difference in the seizure activity - this mystery needs to be solved!

    It's great to see how much fun Mary and Aaron are having with each other - glad the weather has finally relented a bit, for everyone's sake. It's also wonderful to read that Mary's receptive speech is thriving, and that her expressive speech is coming along as well. Little steps in a huge journey...

    Hang in there. Lots of us are rooting for you, Mary, and the rest of the Nalles, along with all the doctors and other good medical folks who are working so hard to solve the Mary-Mystery.

    Susan in Kentucky
    Cousin to 2 from U.

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  3. Oh I laughed at the bit about the curse words. I can just see this little stubborn miss in her cute like EE accent going to town while frustrated. It must be hard not to laugh because it is pitifully cute and redirect her to socially appropriate responses to her frustration. But I'm sure you giggle inside too, because she doesn't know any better, really.

    I really hope in a few months times to read that whatever steps you have to take have help this little one to have a more normal day to day. Until there is a full cure for all the various epilepsies and seizure disorders, one will likely always deal with them in some capacity. But if we can give this girl a break, and a day or a week or a month free from falling into things that would be wonderful. I often question "WHY" about these things I don't understand.

    Keep hope in your line of vision. I am hopeful for her. I have seen amazing things happen for other kids. But it's such a complicated problem. A medicine that may help one thing, may cause another. Then there are so many other factors that may seem so minute but are so big including sleep and diet and stress and environmental factors. We can never know for sure, but to keep on trying. I hope something works!! Something chemical or something organic. Something!!!

    Keeping hope!!!

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  4. Funny about the cuss words - at least the average Americans wouldn't recognize them!
    Jenny

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Loving words from kind people make our hearts glad!

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