Monday, May 28, 2012

A little storm story; The young man CAN talk

Last night tropical storm Beryl blew through town (sorry, couldn't restrain myself). After Daniel was in bed, I told him to yell "Mom! Rich! Or Melody!" if he needed us during the night. Per my annoying habit, I repeated this a few times to get the point across.

I returned to my comfy chair to watch more of the local news and the weather guy getting whipped around on the beach. Pretty soon I hear a very loud and clear "MOM!". I went to Daniel's room to see him snuggled peacefully, but still awake. I acknowledged how well he follows directions, and asked a few times what he needed. He just grinned.

I thought maybe his sister was the one who yelled, because it was SO clear. I peeked in where she was typing away on her laptop. Nope, it wasn't her, and yep, she heard him holler too.

So, I went back to his room and told him how happy it made me to hear him call out for me.

This isn't the first time he's said "ma". He can do it when he wants to, but I very rarely hear it, and this time I'm pretty positive it was mom, not ma. A few years back he startled all of us, including my mom who was visiting, when he responded to my "Happy New Year, Daniel!" with a "Happy New Year!" back. As time goes by it seems like it was just my imagination. I have to remind myself that I do have witnesses.

In other less exciting news, we never lost power and our trees are intact (for the most part). Thousands in the city are without electricity, so believe me I am thankful!

Sunday, May 27, 2012

Stormy Days

This is a picture taken awhile ago of the beach near our home. Tropical storm Beryl is barreling towards us.

We're stocked up and ready to ride it out. The last time we were affected by a TS we lost power for 24 hours, but some parts of the city and surrounding areas were without electricity for days. It's a good idea to have a lot of water and non-perishable food, not to mention some books and games to keep you from going nuts. My big fear is being without AC in this heat!

The Weather Channel is filming from our beach. The bridges in town will probably close (we have an ocean and a BIG river where I live) because of high winds expected to hit.

We're battening down the hatches and hoping for the best!

Thursday, May 17, 2012

Everybody in the Pool!

When Daniel was a colicky baby, one of the few things that soothed him was water. We'd jump in the tub more than once a day back then. He still loves it. The "kiddy pool" below is nice because he can splash away to his heart's content with me sitting nearby. I don't have to turn into a prune for him to have a great time. I've tried several flotation options, like the ones in these pictures.

This year I'm going to try a head float like this one:

He won't be able to fall face foreward with this. It'll go around his neck, leaving his arms free for splashing (again, favorite activity), and his legs can move around too. I hope it doesn't make him feel like he's too constrained. My goal is to be in the water with him, but without the worry of him dipping his face in the pool.

Sunday, May 13, 2012

Mother Love

I'm posting this picture, uncropped...the way I like most of mine. I love seeing the toys of the day in the background; the little purple cup of Melody's on the table.

Daniel was three months old here, Melody three years and three months. This was pre-seizure, before any sort of idea about what Daniel's "delays" would be. Just the knowledge that he was microcephalic, his vision wasn't developing normally, and he was not behaving at all like his sister did at that age. The mantra then was "wait and see". Nervous days of hoping, praying and fearing.

Yesterday Daniel had more seizures. I'm thinking now that the illness earlier in the week wasn't a virus, but a result of seizure activity. His seizures first manifested in 2000 with a lot of vomiting, to the point where the docs initially thought it was all GI and didn't order a neuro consult. Throwing up has been a feature of the Big Ones ever since.

I remember sitting in the hospital room waiting to see a neurologist, and when we asked about it the nurse told us the consult hadn't been ordered! It was 4 0'clock, and since Daniel's dad is a doctor (physiatrist, specialty is head injury) he insisted they get on the horn and we had the team there before 5. Daniel had an EEG the next morning, and performed his seizures on cue. (His swallow study, ordered because on-call doc was insistent it was his digestive tract that was causing him to go limp and unconscious, was normal.)

He's been well controlled for so long with Topamax that this new crop of activity has me worried. He's in puberty, and I know the risks for kids similar to Daniel when the hormones start pumping. I'm prepared with Diastat, Klonopin and praying friends and family.

I like the way Melody is leaning in and embracing her brother in this photo. She's been right there with me all week keeping watch. God, I love them.

Thursday, May 10, 2012

Sick Days

We've had to take a few of them this week. Daniel starting vomiting on the way to school on Monday, and it took a good 48 hours to be eating and drinking normally (for him) again. He topped it off with a seizure on Tuesday, just when I thought he might be turning a corner.

His seizures cause him to turn a deathly shade of pale, and his eyes go completely blank. I start thinking CPR everytime.

I laid beside him a lot (really happy for the new bed at times like these). I told him over and over how much I love him, that I won't leave him, and that I'll do everything I can to help him feel better.

Yesterday, he was still weak, but getting his sense of humor back. I shared some family gossip that was pretty silly but top secret. (If he starts talking, I might be in trouble. ) He laughed the sort of insanely hard laughs where you think you might never stop. Cracked us both up.

Today he woke up with his usual smile, He's not 100% Daniel yet, but pretty close.

Monday, May 7, 2012


I spent part of the weekend at a labyrinth meditation retreat near my home. It's been too long since I've gotten away like this and it was way overdue.

It was World Labyrinth day, and our group walked "as one at one" in the afternoon. Afterwards, I sat near the river by myself for a long time. I dozed a little, too.

The breeze, the water, the stillness and the supermoon were what I needed this weekend.

I'm home now. Daniel and my husband are both sick. I left work early to pick up my boy and laid beside him all afternoon while his stomach ailed him. Having that bit of respite is making it easier to not just deal with life, but find things to be grateful for even in the middle of cleaning up vomit.

For one, I have a boss who understands and appreciates me enough to not make me feel guilty for having to leave work early. It's not always been that way. My basic nature is that of a  homebody, so taking care of my sickly men is not something that I resent. I'm thankful to be aware that what might appear to be a drag is just life on life's terms. I don't have to resist it. It's important not to.