Sometimes I write these posts to give you guys updates on what’s going on with Harper or to share specific prayer concerns. Other times I write to just process through my own thoughts and emotions.
Tonight is a processing night.
We have been in a really weird place with Harper lately. I don’t even fully know how to explain this season we are in. You see, Harper’s case is a bit complex. (Okay, a lot complex!) Most often our immediate prayer concerns are due to seizures and that’s what we share, but there is much more to her situation than just seizures. Those are certainly the scary part of our journey, but they are just one part.
As far as the seizures go, we made it another three days after my last post before she had another seizure, which gave us a total of 17 days seizure-free. That was a pretty good spell! She had a couple of small seizures that day, and then we made it 11 more days, which brought us to last week. Last week she suddenly started giving us a fit over her medications again, which resulted in a rough morning of cluster seizures and a round of our back-up strong medicine. Not much fun.
Unfortunately, other issues have escalated with Harp in the last week. We are finally getting her medicines in her, but we are only able to do the liquid versions right now, which means she doesn’t get the benefit of the time-released tablets. Praise the Lord, she took the liquids well today (thanks to some Pepsi bribery!), but depending on her mood, that process can take anywhere from just a few minutes to 2-3 hours- and we go through that twice a day.
Behavior and sensory issues have been intense this last week as well. Moods have been swinging from one extreme to the other with no warning. We have had long periods of her not using words to communicate, just screaming and growling. She wants to be alone one minute, then is trying to crawl in my skin the next. She’s not handled being around other children well for several days now, becoming angry and aggressive with them. She’s not able to sit still- in and out of chairs, rocking in place, constantly moving. Normal, every day activities have been particularly challenging- from having lunch out in public (she and I ended up sitting behind the restaurant on the sidewalk alone while everyone ate) to riding in the car (thankful for a friend loaning us a DVD player to try!). Her fits are far beyond a typical tantrum, and we are constantly trying learning new techniques to try to help her regulate.
It hasn’t been an easy week, and as a mom, I just get sad. It hurts my heart to see her struggle so much with normal things. I don’t know what to do for her- I try to push her outside of her comfort zone to help her learn to cope and try to stretch and grow her, but every once in a while I just want to put her in a bubble away from the world and let her be. We did that today. She woke up this morning with crazy wild bedhead hair, gripping a baby doll in her pudgy hands, and she was all smiles and giggles and snuggles in my bed. And I decided to just put a pause on life for the day and not push her. She stayed home from preschool and we watched cartoons and played with babies and colored whatever she wanted (she loves to draw and color!), and it was lovely.
So, to you moms out there who are weary and tired and don’t know what move to make next, maybe you need a day of snuggles and cartoons and crayons. Sometimes it’s okay to just hit the pause button, to take some time to rest and process. Will it magically fix all of your problems? No way. They’ll still be there. Does it mean you’ll have it all figured out the next day? Nope. I still don’t have a clue what to do next or how to make things better. I’m still praying that the Lord gives us wisdom and discernment and provides us direction for where to go next. But today I enjoyed a day with my girl, and she enjoyed not being pushed so hard for a few hours. I’ll count that as a success.