Our Definition of O.K.

Reese has had a great day — therapy and music class went well. (Video posted separately.) She made eye contact, and I think, even tried to imitate a friend when we were dancing. That stimulation comes home with her and she is a happy girl. She is someone who wants to make eye contact with her big brother and it was so sweet how she was smiling at him. They had a nice lunch together (normally she is napping), and Davis was so fulfilled by that 3-5 minutes of deep connection with his beloved baby sister. So it’s a high for me, for now, but there’s always more than what you see on the surface, right?

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If you ask us, we will tell you she is O.K., or things are good. And on the surface they are. Reese is out of danger with the ear infection, for now, and in general she is back to herself. It takes several days after that many seizures.  Aside from this sick episode, you no doubt have seen lots of happy pictures. I want everyone to experience her smile and know the littler person that she is becoming. But those moments are probably fewer than you realize.… some days more and some days less.

If I were being really honest I could share all the terrible faces she makes, where we just wish we could tell what she needs. Instead, I will just explain a few things…

1. She whines a lot. When she isn’t smiling, even sometimes when she is, she makes these sounds that we interpret as whining. But maybe it’s not meant to be a show of frustration, it’s just her preferred sound. Who knows. But it can really grate on your nerves after a while.

2. She grinds her teeth when she is awake. It seems to be when she is tired or upset, or maybe related to her ears, but good lord it’s insane how loud and spine-wrenching it is. We have tried to recreate the sound and it’s not even possible. Will be so glad when all those teeth are in.

3. Her attention is limited, so entertaining her with toys is always a challenge beyond five minutes. She wants to be held, or walking, or moving. She has sensory input issues and she needs more than most kids. She wants to be touched, and she wants to feel so she rubs things, puts things in her mouth and even pinches and scratches herself or us.

4. And then there is the bed time routine. For some reason, ever since the first round of surgeries, she has had issues falling asleep. She used to be so good at going to bed on her own. It seems because of her sensory issues she has a hard time self-soothing as well. Some nights she is calm and happy, just not sleepy. Most nights though, she is fidgety and restless and frustrated about not being able to fall asleep. She wants to, we can tell, she just has forgotten how for some reason. Bath time does help matters. It’s torture for her when we wash her hair, so then we comfort her until she stops crying and that basically goes straight into 1.5 hours of laying with her in our bed, sometimes walking with her, bouncing her like a newborn, and singing or talking gently in her ear.

So yes, she is doing well, as well as can be expected, and we are still working on what to do next for her. But honestly, her O.K. is never going to be what yours or mine is. It’s just another thing we have changed to get used to whatever is normal for her. Just thought we should be transparent and that some would like to know what the day-to-day is really like.

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