A Shaky Night

Maisy had a seizure this morning. Actually it was more in the night than the morning, and had she not crawled into my room and touched my arm; and had I not pulled her into bed by me to warm her up before taking her back to her own room, I never would have known she had a seizure at all. But with her snuggled up next to me I could feel her little body tremble and when I turned to see her face, I could see the twitch in her features. It seemed to go on forever, but I'm sure it was just a minute or two. I carried her downstairs where I could turn on some lights and check on her. She snuggled in my arms and smiled, a little lopsided smile. She stayed semi-responsive and maintained her breathing the entire time. And now she is happy and laughing, jumping with support from the couch while the Clubhouse crew sings the "Hot Dog" song.

I know she will be fine today, but now the questions come. What is going on? Is she having seizures that I don't know about? If she recovers so quickly could this be going on often? How do I let her out of my sight? How do I let her sleep at night without being right there?

I guess its time for a trip to the neurologist. I'm dreading it. We have had good neurologists and bad ones, and I haven't visited an EEG lab in quite a while. The head full of little probes, the erratic lines scratching hills and valleys on the monitor, all so you can know what "somewhat, may, possibly, but it is hard to tell, kids are resilient and they have room for growth and your daughter has been through so much already, neurology isn't an exact science, but it seems that maybe, judging by various tests," might be going on in a mind we don't completely, fully understand yet.

Then comes the phenobarb, I'll ask for keppra instead. There will be tears from both Maisy and I (hopefully I can keep mine in check until the car.) We might hear extra initials, besides the EEG, like MRI and CT. We'll possibly have an overnight stay for observation, where I will try to keep everything "as normal as possible" while I try to get a five-year-old wearing a hairnet of probes to sleep in a strange white room with light coming from monitors and computers instead of windows. I hope they won't try to put her in a crib, she'll hate that.

Well, soon the tell-tell post seizure lethargy will kick in and I can lay down next to Maisy and get some sleep. Then the ramblings will go from my computer to my dreams. Ah, the sweet dreams of worry.

A mother is only as happy...

As her most unhappy child.

Sadie is hurting. My beautiful, imaginative, happy girl, is sad. Three days this week she has called me from school with a problem that requires me to come see her, but all she will tell me is that she had a bad day. I know that some of the hurt involves kids saying mean things, because she has been using negative terms regarding her appearance. I also get the feeling it is someone she actually likes or cares what they think because she is taking it personally. And I can't imagine someone who matters to her saying unkind things.
But then Sadie internalizes a lot of things. She is empathetic and sensitive. I think that may be why she has a difficult time sleeping and is plagued by bad dreams. I always feel like if we were viewed by our hearts and love, instead of our appearances this would be an entirely different world. However, Sadie is beautiful inside and out. I wish that at a time when little people are trying to establish where they fit in the world and may feel a need to displace others in the process, my daughter could know without a doubt how wonderful she is and already see how much she lights up the world around her.

Some Days and Others

Yesterday was a good day. It started out kind of rough, especially on my back. Maisy wanted to be held most of the morning. Her teacher wasn't at church, and she wasn't too happy about being with anyone else. There was one teacher for four little ones and Maisy would tip the scale too much. So she came with me to my class. Not ideal, but okay.

Then we had family over for dinner and celebrated Maisy's birthday. She loved the attention and the presents and she ate a cupcake. I think the highlight might have been the balloon rockets.
Then today. The morning was spent being late for one thing after another. Evan is on-call all day and night. Somehow I missed Maisy's bus, luckily my mom was driving by and was able to get her before the bus driver took her back to school. (They were fifteen minutes early to pick her up, so maybe they were early dropping her off as well.) But the topper was nap time.

Now I realize that the five-year-old in Maisy does not want to wear diapers. But the ten-month-old gross motor skills (primarily, poor balance) limit her ability to potty train. So instead of going in her diaper today she took it off and went on the floor. Then she got out the wipes and tried to clean herself up. Then she went about playing diaper-less. There was poop everywhere. I hate to even write this for the imagery it conjures up. But it was everywhere! I just want this day to be over, but in the craziness of borrowing a carpet cleaner and trying to wipe down walls and furniture, I got behind in her feeding schedule, so I will be staying up late tonight to try to catch up. So I guess some days are just easier than others.

Five years ago...

Five years ago this week I was leading a very different life. I know I have mentioned it enough, but it has so much to do with who I am now. There is so much beauty in the little things. There is so much love to be had.

Five years ago I learned that there is physical pain when your heart breaks. I learned that strength can be found where you didn't know it existed. I learned that babies aren't always brought to your arms to be held and loved when they first come into the world.

Five years ago I learned that health is a gift. I learned that love can create miracles. I learned that many people will do much for a stranger. And that even more will do all for a friend. I learned that when you have been sleeping in a chair for a couple of nights post labor, you may want to write down that you took a sleeping pill so you don't forget and take another. I learned that two sleeping pills can seem like bells palsy.

Five years ago I learned that with love, I could will a little person to live. I learned about priorities, balance, touch therapy, anatomy, and how to read a ventilator. I learned about cardiologists, pulmonologists, cardio-thoracic surgeons, ENTs, infectious disease doctors, fellowships, residencies, nurses, nurse practitioners, interventional radiologists, gastroenterologists, nuerologists, and respiritory therapists. I learned that no one would watch my baby as closely as I would, no matter how much they cared. But I also learned who I could trust to watch almost as closely.

Five years ago I learned that even though my life had changed, even though taking my third daughter home wasn't what I had planned, even though, while my world had stopped, others were still moving along, what I had been given was every bit as wonderful as what others had been given. Even though I might mourn the loss of what might have been, I still love what is.

I'm okay with questions about Maisy's feeding tube. I love to share some stories of the miracles we saw. I don't mind the stares, just don't frown when you do stare, because my life makes me smile.

Five years ago I was taken away from the life I had. I moved four hours from my husband and two children. I had a small dormitory room and then a little apartment, along with a house I couldn't visit. I sat in a hospital room watching a baby too small to understand look at me with total understanding. I held a hand that should have held a rattle and stroked a foot that should have been kicking off socks. Where I wanted to see bows I saw IVs. And through it I learned to love the life I had been given. To appreciate the wonderful gift of the simple things.

And now, even though I am clapping for a five-year-old because she ate a whole container of yogurt. I love it. My back may hurt at the end of the day, but I am so blessed to be able to get through the day and carry my thirty-plus pound girl where she needs to go. And don't think I would smile at the antics of a three-year-old if I didn't know how lucky I am that he can do that. Or appreciate the screams of delight if I hadn't known the silence. So, five year ago I learned a lot of new things, but mostly I learned how much I love being a mom.