Ink

When I was in my late teens and early twenties the group of people that I spent the majority of my time with was a group that fell somewhere in the categories of hippies and skateboarders. I think its probably safe to just call them (and by "them" I mean me too) slackers. Im not proud to say this, but it is what it is. I was young and brought up in a way that this was the "norm". It took a little growing up on my part to later realize that this life style was not what I wanted for myself or my children. Anyway,piercings and tattoos where the "thing" to do. I was the first in the group of girls to have both. My first piercing besides my ears and nose was my navel. My first tattoo was on my left ankle, of a gecko. I have always liked the lizard, even though he (yes, he) holds no personal value to me. Basically it was the first thing that I saw that I liked. I had him put onto my ankle to cover up the line my uncle put there when I was ten and my mother told him that he could put a rose on me. Yes my mom gave my uncle permission to tattoo me at the age of ten, but thats another story. In my uncles defense, he felt badly. Needless to say, I was young and it really hurt, so he stopped. Hence the line being covered up by the lizard.

Through out my younger twenties I got more tattoos and more piercings. Sadly, for me, it was addicting. Traques, Rooks, Eye brow. Butterfly, Dragonfly, Jasmines name in Chinese, flames and Kilieghs name in Japanese. Right now, if I could, I would have them all removed, even the lizard. I wish that the removal process didn't include leaving blobs of scars in replacement of what was once someones "art work". If it could be a clean slate of skin again, then I would do it. But it cant, so, I got another one. Smart, right?

Here's my theory. I have Jasmines and Kilieghs names on my back. I have another child, Vada and I cant leave her out. That's not an excuse, I just wouldn't feel right having Jasmine and Kilieghs names on me and not Vada's.

Before Vada starting having seizure I had told Justin that I wanted her hand print. Not just any hand print, but her left hand print. For those of you who don't know a trait with people who have Down syndrome is on their left hand. Its something I had never known about until we found out that Vada had Ds and I started reading about it in preparation for her arrival. The palm of her left hand has one "life line" where as people who don't have Ds tend to have two seperate lines. Its only on her left hand making this characteristic even more qunique and special about her and special to me. Her little pinkies have a little kink to them as well, but its the one life line that I wanted portrayed. It stands for so much to me. Her hand symbolizes her strength and uniqueness. That tiny hand of hers reminds me that she is so small and has overcome so much already. Every time I look at her let alone her beautiful hand I don't see Down syndrome as some many others do. I see perfection and beauty. God gave this wonderful little girl to make me see greatness is something other than the "norm." I wish the whole world could look at Vada and others who have disabilities and feel the same way I do. Perfection, comes in all forms.

So instead of figuring out a language to translate Vada's name into I chose to have a drawing of her hand on my back. I don't think that people in general will notice the symbolism in her tiny hand that I do, but I will tell them. I will tell everyone about her difference and why it is so wonderful and NOT because I cant look past the Ds, because in all honesty its not what I see. I will tell everyone what this tattoo means to me and why I chose it because I AM PROUD of who Vada is. If I could, I wouldn't change her. She is who she is and I wouldn't want her any other way.

Hear Me Roar

The day after I had discharged a certain Neurologist from Vada's room I was known. I suppose I may have already been talked about prior to this situation. I had moved into Vada's hospital room with her and I never left her side for any longer than ten minutes once, maybe twice a day. I knew I was the topic of many conversations because a lot of curious staff had come to talk to me about what was said between this certain neurologist and I the night before. Plus, as it turns out that not all parents are as blessed as I am, and they actually have to leave their child at the hospital.

That morning Amy came to sit with me. Vada had been removed from the EEG and we were waiting for the doctors to make their rounds.

I had noticed a change in Vada since the day before when the neurologist added the two extra medications. Vada was not really waking up. She was slightly awake when the tech was removing all of the leads from the EEG, but she didn't fuss or really even whimper. She was practically putty in my hands.

Amy and I had already discussed several things to bring up to the doctors when they finally came in.

Vada was asleep in her hospital crib when about thirteen members of the hospital came in surrounding her. They acknowledged us slightly and began their discussion on Vada's status. I listened intently. Our resident, a smug and arrogant man began to explain that the neurologist added two new meds the previous day and since then we hadn't seen any seizures. Therefore, in his medical opinion all seemed to be going very well. The head doctor then asked me if I felt that to be true. I agreed and said that we hadn't noticed any physical seizure activity. She then made a comment trying to rectify the conversation I had had with the neurologist the day before and asked to later meet with me privately to take a report to give to her superior. They had finished up their meeting and walked out when Amy said something about Vada not waking up so how can we tell if she is having physical seizures.

On a side note, just in case you were unaware..., West syndrome/ Infantile Spasms (which is what we think Vada has) have physical seizure activities, typically before and after sleeping. You need to be able to wake up to see those seizures and you need to be able to see those seizures to correctly identify and diagnosis the condition. Since she was NOT waking up, we were not seeing seizures.

I went out to the hall and asked if I could talk again with the doctor. With in a minute she was entering our room followed by her groupies of medical want to be's. I began to express my concern of the newest medications that Vada was placed on. She had only started her first anti epileptic medication two days prior and then was placed on two new anti epileptics the next day. How were we to know which one was helping and if something happened, like a bad side effect; how were we to know which medication was causing it. She agreed, but this is when the resident, the one who was on his own personal pedestal, chimed in; "Yeah, but its working isn't it..? he said. "She hasn't had any seizures... right?" I had had just about all I could of him at this point and this is when my sarcasm kicked in. I turned and looked directly at him and replied with; "Yeah, but she hasn't woke up!" That was it. The head doctor asked me what I would like to do and I said I want her off all of the medications. i want her to wake up and then for us to start again. One medication at a time, and she agreed.

If it weren't for Amy making an obvious statement I would have been left sitting in that room after our first meeting feeling lost and hopeless watching as Vada slept continuously. Luckily my meow was becoming a roar and I had Amy to thank for that. I had once again stuck up for Vada in her treatment. I had corrected something that was not right. I know now that it doesn't matter if one medical professional doesn't agree or even believe me, I know my daughter.

I may have not gone to college for seven years (or longer), but I have a PhD in my children and it is my job to take care of them and their needs. I feel like a stronger person because of these last two weeks. I have held my ground regardless of what anyone has said or believed. Plus, even when I was alone, I knew that God was right there with me helping me be the strong mother that I needed to be. I am proud of that and I am proud of myself.

Finding My Voice

I was attempting to give Vada what normalcy I could by doing some evening "tummy time" with her. I had just put Vada to the floor when a new face entered our room.

This new doctor had quiet footsteps and a warm demeanor. She introduced herself, however, her name is NOT important (at least, not to me, or to this story). Honestly, she lost all importance to me with in the first five minutes of our conversation.

For now, for this story's sake, I will tell you say that she was one of the pediatric Neurologists .

At first her presence and casual conversation soothed my nerves. That quickly changed when she actually began discussing something worthwhile.Vada. She pointed at the computer screen that was illuminated by the constant EEG results.



"This is very bad, not normal." She replied as if her words wouldn't cut into my heart like a knife. She finished by saying, "This is terrible EEG reading and it keeps getting worse."



"What are you trying to tell me?" I asked, (it was becoming difficult for me to talk. It felt as the air in the room had started to deflate.) "Are you trying to tell me shes going to die? Could she die from this?" I asked.

"Oh, no, no." She answered quickly but then threw in "She'll die because her brain will be so damaged that her body wont continue to work properly."

I saw flashing stars. Seriously, I did. I think that I was close to passing out. It was like when you get hit really hard and you see those white spots. I am pretty for sure that getting hit would have felt better at that moment.

She then began to tell me how fluid could and probably would build in her lungs, how her heart could fail, and..., probably would considering her heart.

I just sat there dumbfounded.

Her words became static, background noise as I began visualizing Vada just a few days prior to all of this.

Her seizures started on Monday. That Sunday, there were no warning signs. No clues. In fact that Sunday was an memorable day.

Our pastor had just held her up in front of our congregation.She was just baptized.

Justin wore a suit! He doesn't dress up like that ever.

We had gone to one of my favorite restaurants, Ruby Tuesday's, to celebrate. We had tried every flavored lemonade that they made. It was a beautiful day. Fun, with wonderful weather.

Vada had even had her first real taste of solid food that night. Sure, it was just oatmeal... but still a milestone. A step forward. Something to add to the baby book.

I was having a hard time grasping this. I didn't understand..., What was God thinking? I was mad now. Is this what he wanted? I didn't get angry when I was pregnant and found out Vada had Down syndrome, my faith held on. I kept strong. Was God stepping it u a notch? Trying to see how hard he could push me?

No..., God knows what I can handle... right?

It took me a second to snap back, but I began hearing the doctors words again. I'm sure I only spaced off for a second or two. I know I didn't miss anything of importance because she had diarrhea of the mouth, and her words were toxic. It was almost better not to listen!

"I know Down syndrome. My friends had a son who had a very mild form of it and he died when he was twenty." I heard her say. I turned to look her in her eyes. I was lost in what she was trying to tell me. Mild? No, that' not right.

I just stared as she continued. I'm sure my mouth was wide open, but she paid no attention to what her words were doing to me. If she did, she didn't care.

Once she finished her spew of her Down syndrome "knowledge" I spoke. My heart was heavy and I could feel the heat that had settled in my neck and I could tell it was still rising. I wondered if she could tell. Was my face as red as it felt it was? If so, im sure it was an interesting shade.

"No. Your wrong." I said with as much restraint as I could. "I know of many people who have Down syndrome and who have gone to college, who are in regular education classes, who live on their own, have a job and are older than thirty. I seen a man at every softball game my daughter had this summer, who was at least thirty, who has Down syndrome!"

I went on, not letting her interrupt me. "Our parents have a neighbor who has a beautiful daughter, and she has Down syndrome. She went to college and she graduated! Plus, she is a beautiful singer!" By now I wanted to shake she shit out of this lady, but I didn't. I said what I had to say and I did it with confidence. I made sure sure that I didn't "freak out", because I am not going to be labeled as a over reacting mother. When I speak, I speak for Vada and I will be heard.

After she left Vada's nurse came in. That doctor had prescribed two more anti seizure medication to be started right away. I didn't think much about it and said "okay". As I watched the nurse give the new medications I began to tell her about the conversation that the doctor and i had just had.I was about half way into my complaint when she stopped me from talking. I had just finished telling her how the doctor actually questioned my choice for not aborted after I found out that Vada had Ds. I thought she was going to make excuses, but she didn't. She had a look of disgust in her eyes and began t tell me that this was not the first time this particular doctor had made such inappropriate comments. Other parents had similar complaints like mine.

She said I could tell her superior. I could choose for her to not treat Vada" anymore. She waited for a reply, but I didn't have one to give. I didn't know what to do. At that moment I was actually considering that doctors feelings. I didn't want to get her in to trouble. I also didn't want to hurt her feelings. What would she think if she were told that I said she couldn't treat Vada any longer.

It wasn't until later that night that I talked with a newly made friend of mine, Amy. A mother who had gone through a very similar situation with her daughter. I told her about the whole conversation with the doctor. She listened to me quietly, making little to no comments until I was finished. Once I had filled her in on everything she began to open up. Spilling out her wisdom, experiences and advice to me. By the end of our conversation we had agreed that she would come up the next morning and sit in during the doctors "rounds". We had also established that I was in control of Vada's treatments, I was the voice that the doctors had to listen to.

After hanging up the phone with Amy I went and found Vada's night nurse. I told her that the doctor who we had discussed would not be allowed to treat Vada any longer. She was not welcome to come into our room or make any more choices for treating Vada.

... and it began..., I was finding my voice. The voice I read about in all of the parenting with special needs books. The one all of the video's on Down syndrome talked about. I was my daughter's only voice and I had begun to use it.

A New Fear

Yesterday seemed like a typical morning. We started a bit earlier than normal, but that was nice because Vada and I spent a little time playing with her toys. She had been up for about an hour and fifteen minutes and I had put her on her mat to play with her toys while I folded some laundry. She had been nodding in and out of sleep at that point. I was sitting right next to her when I noticed that she had begun a "jerking" motion. She was laying on her back and I saw that her arms were going straight out and her legs were coming up and into her stomach area. For some reason at that time I thought that she must be really tired. Maybe she was kind of nodding off and getting startled when her little limbs were relaxing. I say startled because her facial expression look like just that, like something had startled her.

She had woke up almost at five this morning, which was early for her, so I passed it off as she was tired. It was cute at that moment. Then I picked her up and she continued to do it. Her right arm was to my stomach and her left was kind of dangling over my arm, so I brought it in so if she was having that falling sensation it might help her feel more secure. It didn't stop what ever was happening. Then I became concerned. It hit me like a ton of bricks, this scared sensation. I kept thinking what is this that is now happening to my baby. The fear took over only for a spit second. Then I laid her back down on her mat, ran down to the basement to get Justin's phone (mine wasn't in sight and I didn't want to waste anytime). Our phones have camcorders on them. I wanted to record what was happening so I could bring it to her pediatricians attention. This way I was hoping to be taken seriously. Sometimes I feel as if people might think I'm a bit overly concerned. I hate that by the way. This is my daughter were talking about. And when things are happening like blood in her stool for over a month and nothing is being done, I get scared. That's not normal, and neither was what ever it was that was happening to her right then and there.

I did get it recorded. I took a little over a minute of these "spasm" (it seems like a good descriptive word for now. Then I put the phone down and scooped her up and rocked her to sleep. She was already tired, so I am not for sure if what had happened had made her more tired, but she did eventually stop the jerking and fall asleep.

(I am working on getting the two videos uploaded onto the blog. However, they were recorded and emailed from two separate phones in two separate ways... I think I might have an easier time with the second video. Hopefully that will happen soon.)

The day went on as normal. Pretty busy. It was "Un-Pack Your Backpack" day at school. I first went to Kilieghs school. Then because I had some extra time I ran over to watch the last twenty-five minutes of Jasmines Karate class. Afterward I drove home, picked her up (she rode her bike to and from Karate) and then we were off to her school. We didn't get home until around seven. I put a casserole in the oven that I had prepared earlier that day knowing we'd be running later than normal. I laid Vada down on her play mat while I served up dinner and got everything ready and with in minutes, maybe seconds, she was doing the same thing as this morning. It was 7:44 p.m. when I started recording. It was about a minute and a half of her doing it, then I put my phone down and held her for a couple of minutes. When it seemed to stop I sat her in her Bumbo at the table (which we do during dinner). For the most part she seemed "normal". She did twitch, like a repercussion of what had just happened, but it was very mild and spread out over a few minutes before fully stopping.

The moment she started doing it again my heart became very heavy. It felt as my heart had melted and was sliding down into my stomach. This morning after the first incident I was trying to download the video that was on my husbands phone to youtube, then I would be able to get to it easily to show the doctor. I had titled it "Spasm??". I thought that I had downloaded it correctly, but when I went onto my account I couldn't find it. I did however, find other videos on Spasm's, Infantile Spasm to be precise. Something told me to click on one of the videos and this is what I found...



After watching this I did a little searching, and watched a few more video's. I was already convinced after the first time that this is what Vada was experiencing. I called the pediatricians office and left a message. It was never returned, which is not a common thing. My calls have always been returned with in the same day. However, when it began to get late I figured I would just call the next morning. After all, most people act as if I am over reacting, so I probably was and it could wait a few more hours.

After the second time, which was a bit stronger than the first time, it reaffirmed it in my mind. Now, I'm not saying that I am correct. I have no idea what is happening to Vada, but after the second time I called her pediatrician and ended up getting an appointment for today at 10:15 a.m. I am requesting that an EEG get done immediately. If they wont do it then I am taking her to the ED where they will have to once I mention the word "seizure". I'm pretty for sure that her doctor will get her in for one right away though.

After, I spoke with the doctor I tried to send him the video's via email. I had sent a note attached to one of them asking that he send me a quick message letting me know that he had received the emails. So I was checking for a reply from him when I noticed that I had messages on Downsyn.com, and a friend request on Facebook. When I saw that nothing had come from the doctor I checked out what the messages were about. Through Downsyn another mother was contacted, and she contacted me with her phone numbers asking me to call her. It was fairly late at this point, but I called none the less. She answered, and long story short, she said my videos reminded her exactly of her daughter when her seizures first started. She gave me a lot of advice and because of her I feel confident in what I am going to do and say to get Vada checked out and if Infantile Spasm is what she is having, I feel like I know how to start getting her the help she needs. This mother, Amy, I am grateful to. I have someone who is one my side, other than my husband, and this person knows all about what we might be facing. That, is somewhat of a relief to me.

So I will have to let you know what we find out this morning.

Here are the two video's that I recorded of Vada's Spasms.

In this one you hear Jasmine laugh at a sound that Vada makes. Jasmine, doesn't know what's happening, so to her the sound was funny.

Children's Muesum

B

A Monkey Joe's Monday