The fish tank story...or how I gave up on my mind.

>> Saturday, February 14, 2015

I have alluded to this story in public, told it in private and now...I share it with the world. My SN family will understand and laugh their asses off. I do now, but then...whole different story.

Bug was 3 and a half, he had had 6 seizures or so , Taylor was 16 months and we still had hope.

Bug's regression had gotten worse over the last few months, he was not eating with a fork or spoon, he was running everywhere, knocking stuff over as he went, crying at night and not looking at us or engaging us much anymore. It was such a slow regression that we just attributed to him being 3, in all its glory. We were wrong and this day, was the catalyst for days to come. When I survived this day, and everyone in the house did as well, I was well on my to acceptance and partially losing my grip.

Bright and early (Bug always woke up between 6:15 and 7:00am), I changed the first poopy diaper on Bug when I heard Taylor wake up and I changed her first poopy diaper. Glenn got ready for work and I really have no sense of when he left because I had changed two more diapers by that time...I am guessing...8:00am? Who knows, not important...he was gone, I was alone and gloriously unaware of the poop-storm brewing.

After breakfast it began. I sat down and smelled Tay. Bug was sitting in his high chair. While I changed Taylor, Bug disappeared.

Bug? Where are you? Come here.

I hurried and finished with Taylor because silence is never good but silence with SMELL is worse.

I found him upstairs, feet in fish tank, fish trapped against the side of the tank, tank lid IN tank and something floating in the water.  I looked again at Bug who had BOTH hands in the water. Here's the actual visual: 20 gallon tank, lid in water, child sitting on top in corner with legs apart in the water bending over with hands in water...moving them around. The lid is sideways and pinning the fish to the side of the tank. The Red Devil is pissed and I realize: That floating stuff is poop. NOT the fish's. Bug is smiling.

I take Bug into the bathtub, rinse him off, let Taylor get in the water when he's rinsed, and then dress them both when they are done. It took about 10 minutes. Back to the fish tank.

I take the fish out of the tank, put him in a bowl, empty the tank, wash it, clean it, begin to fill it up when I hear: he he he. I turn around and Bug has given Taylor ALL of my jewelry and she has begun to line it all up down the hall. The tank finishes filling, I condition the water and then, absent-mindedly, just dump Red back in the tank.  I turn to pick up my jewelry, asking Bug and Taylor to help me...they run away. I pick up the jewelry, toss it back into the box, not arranging because I KNOW they BOTH have to have eyes on them, and lock my bedroom door (this is important later).

Bug and Taylor are back with me now and they both smell. I change Taylor first. MISTAKE. Because Bug runs away. I hurry, hurry, hurry and when I am done I find Bug. IN the fishtank. See 'actual visual' above. I take Bug, dripping all sorts of stuff, out of the tank and rush to my bedroom which is literally 10 feet away and INTO the locked door. Decision time: Set him down to get the key or take him into the smaller bathroom dripping all sorts of stuff all down the hall. Hmmm...I choose option one and as soon as his feet hit the floor and I reach up to fetch the key...he is off. Nearest option to him is DOWN THE STAIRS. I drop the key and grab for him, I miss him. I scramble to follow and trip, down three stairs, twisting my knee, but I catch him and he giggles.

Back into the bathtub I limp with him. While in the bathtub, Taylor comes walking in: poopy. I fetch the diaper and wipes that I keep in our bedroom and when I get back...she is IN the tub. Bug has helped her. I take her out, screaming, lay her down, change her by the bathtub and don't dress her. When I get Bug out, I dry him off, throw on the diaper and leave him naked. It's just easier.

I then empty the fish tank, clean it...yada yada yada...we've heard this before. Fish back in, all things good, kids are watching TV in my room. Quietly.

I go into the room and Taylor comes over to see me, it's 10:15am and she is leaking wetness. I change her and Bug is still watching TV. Hmmm...I go to check on him and he' guessed it...poopy. I change him. It seems too easy. It was. As soon as I am finished with him, Taylor is crying and poopy.

I start to feel sorry for the kids, they must be sick. I change her and we head downstairs for snacks. Bug, in the meantime has put on 3 shirts, a pair of shorts and his sisters skirt.


I make them something and they eat in their high chairs. Easy. Calm. Hooray. For about a minute.

I do my best to get them to play with their toys, I strip Bug to one shirt and shorts and then he is all over the place, all at once. He is running from room to room smacking a wall and then running into the next room. It was like human pinball. And then, he stopped, standing in the small hallway between the family room and the kitchen guessed it, bent slightly over and let loose. I laid him down to change him when I realized: Taylor was no longer in her high chair. I found her upstairs slapping the fishtank, poopy. Her, not the tank. I had used all the diapers upstairs and had to go back downstairs. Taylor followed me....Bug didn't.

She was crying from discomfort and pain so I didn't hesitate to change her. Can't call it a mistake BUT...that's fish tank.

I get him out, put him in the bath, with Taylor, and started washing all of the bowls I had been using earlier to get the tank clean. Once the children were clean, I dressed them, and began on the fishtank. It was after I drained it and washed everything off that I realized I was completely out of water conditioner for the tank. I toyed with the idea of not getting any, but it wasn't my fish and I was lucky it was still alive. Pissed and nipping, but still alive. I left the fish in the temporary bowl and we all got in the car and drove to Walmart for conditioner and a handful of tank light bulbs.  On the way back, I bought McD's, there was NO WAY in hell I was going to turn my back on them to make lunch.

We got back, the fish was still alive (I was slightly saddened) and so I proceeded to set up the tank. It was at that point I did what I could to keep Bug away from the thank...I don't recall what that was, I think it had something to do with tying down the top but I can't be sure because as soon as it was done....yep. More diapers.

We ended the day with Taylor asleep, after 16 diaper changes and Bug and I sitting on the floor with a book between us. I looked at him, he was smiling, I was trying not to cry. He looked at me and giggled and then he played with anything he could get his hands on. I tried to get him to look at me, to look at the book, he would take the book, turn several pages at a time and then close it. I would try to get him to look at the book again, but he wouldn't. He wanted to get back up and go play. I would sit him back down, and try again. Still no go. I begged him to look at me, to look at the book and he would wiggle to the toys. I pleaded: Bug, look at Mommy. No dice. So, I changed him again, ending with 11 diapers for the day and laid down with him until he fell asleep.

To this day, it holds the record for worst day that didn't end in a hospital visit. I have changed as many diapers with 3 kids in them at the same time, but I have never cleaned up so much poopy water in my life.  It's kind of funny now, but that day, I cried to Glenn when he got home, I told him I was close to losing my mind, that I couldn't handle it and he talked to me for a few hours. I felt a little better but have never been the same. Having a zombie fish in the house will do that.


Slow but still change.

>> Monday, February 9, 2015

I've explained before that with Bug, any medication change actually takes at least 6 months to determine if it will an effective long-term treatment. It's the way he builds cells.

We are 5 months into his new treatment and the last 3 days...he has been chirping and humming almost non-stop.

It goes like this: spin, spin, spin, hum, hum. hum. Spin, hum, spin, hum, hum, hum.

He is still seizing, one or two a day, not more than 4 lately, and usually they all revolve around sleep. A few minutes into sleep and BAM! Spacing out the medications seems to have stabilized things a little.

Sleep. So long the enemy, with no respite in sight. Sigh.

But the humming though...that's something.


A strength not a weakness

>> Tuesday, February 3, 2015

“Heaven knows we need never be ashamed of our tears, for they are rain upon the blinding dust of earth, overlying our hard hearts. I was better after I had cried, than before--more sorry, more aware of my own ingratitude, more gentle.” 
― Charles DickensGreat Expectations
I have been crying off and on all day today, it's a good thing Bug went to school before I got caught up on all my social stuffs or I would have not let him go.

One of our little ones that we fought for, a little radiant angel, left this mortal realm this morning. I vividly remember wanting to hold her, but not daring, such a little thing that seemed so fragile. All I could do was touch her and feel her life. I am not exaggerating when I say she glowed, she had this porcelain skin that women only dream of having, and these pale blue eyes, all that was her screamed: be careful with me, and I can teach you to love.

I did not get to know the family well, and for that, I am sorry, I tend to shut down a little so that I don't get hurt. It's self preservation because I really do feel too deeply. A blessing and a curse.

The blessing part is that I am not ashamed to cry. I feel their loss, I imagine letting go and it hurts me beyond words, beyond reason, it just hurts. The thought that she is gone, something I have faced too much the last year, a fact that I have come to see every few weeks: the personal pain of losing a child. It's something I don't want to face, something I probably will face and something no one should ever feel. But loss is a part of life. Born, live, die. It happens to us all, some are older and some only begin to live but the quality of that life isn't measured by anyone except the person living it. And his/her loved ones.

She is gone. I will cry for a while longer and I have that luxury of holding my children tonight, smiling at Bug and have him smile back, tickle Aiden and have him laugh, kiss Ava and have her kiss me nonstop, watch Taylor grow up and find herself. And I will cry for my children too. These tears for Brooklyn are pure and I am not ashamed of them. Her memory deserves my emotion and I give it to her, and to her family.

Oh how my heart hurts for them!


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