What 36 days in the hospital teaches you

36 days doesn't seem all that long. Except of course when you're stuck in a small hospital room, negotiating care for your sick child.

I learned tons of information about seizures and how they manifest. I learned tons about narcotics and which can be administered via IV and which can only go through oral consumption.

Oh! and Valium can stay in your system for up to 100 hours after it is given. 

I've learned that there is very little common sense and in the medical industry. And the greasy wheel does get fixed. "I'm not here to make friends people". 

I learned to trust my instincts and to use all the tools that I have in my toolbox. this consisted of diffusing oils, coloring and meditation. (Breath in..... breath out.....don't punch anyone in the face)

I learned that the relationships and jobs that I have in my life now are a culmination of the universe being kind. Previous relationships would not of been able to withstand the emotional intensity and previous employers would not of been as understanding.

Most importantly I've learned that there is a greater plan at work and my beautiful boy is a catalyst to so many lessons I need to learn.

Stuck in limbo

After one night home to sleep I'm heading back down to Westchester. It feels like Groundhog Day, where every day feels like the day before. 

Time in the hospital moves at a different speed. It's a completely different plain of reality. When you don't go outside for days and are awaken hourly by beeping machines: you're whole biological clock is skewed.

We've been extremely fortunate that in Mr's 7 years, this is our 2nd hospital stay. I don't have anything else to compare it to but I do know that there has to be a better way. 

What it feels like it's too many cooks in the kitchen. Teams of doctors, made up of medical students and specialists are all involved in the care of Mr. It's a great concept in theory however the application is way to jumbled leaving us with no faith and frustrated. 

Most of the time it feels like no one has common sense. I ask questions and get different answers. When I prove a point, they come up with something else. 

In the end they have the power and I've been reduced to "just get it done". I think this is what they are counting on. 

There has to be something else, a patient  centered approach where doctors actually listen and realize that the expert of the child is in fact

the parent. 

I understand that the medical field has to use data from the "in most cases" scenario but for a child like Mr. He isn't "most cases". 

But we are left at their mercy. For three weeks we have been here and still have no idea when we can go home. Our choices are limited. Do we leave and go someplace else and start the whole process all over? Do i cause such a fit that we are penalized and put at the bottom of the list? 

My resources are taxed and my emotional compass is broken. I've never felt so powerless, so small. 

Thrown a curve ball

7 days, 7 nights we've been here. I feel like I am slowly losing my mind. No sleep, my child in pain, and a medical system that seems to lack common sense. To say I'm at my wits end is an under statement. Actually I am really afraid to put it out there to the universe, because it will most likely prove me wrong. "So you think a week is bad, huh? How about another" - says the universe to remind me that I have no control over anything.... ever.

Being a parent is a constant learning curve. Being a parent of a child with special needs is a whole other university.

For the most part, Mr. has been a very healthy child. Apart from his developmental delay, he has been happy and healthy up until this past year. The onset of seizures has really thrown him and us for a loop! So on came the medication, and out went his eating habits. He slowly dwindled to primarily living off of liquid nutritional supplements. He lost a few pounds.

Last week the seizures began increasing, and he then stopped eating and taking his medication completely. This of course, brought on more seizures. It was awful. His poor little body convulsing in clusters of seizures 30-45 seconds long, one right after the other for 10 to 15 minutes.

Down to the children's hospital we went to see if they could help us.

7 days, 7 nights we are still here.

Kids like Mr, aren't easy. You can't reason with them and say "listen, start eating and taking your meds and we are out of here". No one can tell us for sure about anything and since Mr. isn't talking we have to guess.

The previous medications are not doing the trick, what they are getting into him now is through IV, but we can't take the IV home with us, and quite frankly I don't want to live here. So they offer us solutions. The main solution is a g-tube. A small tube that they insert into his stomach in which we can pass medication and food directly to him. Sounds simple enough... but not really.

I know plenty of families and children that have a g-tube in place, and it has been helpful, even life saving. Its a hump though, a big deal that we have to get past. Its the concept that its one more thing that Mr. has to go through. Its the concept that his nutritional consumption will be through the g-tube. It will mean a whole new routine for the family. It will mean feeding times, and medical appointments and tubes, and syringes and fluids. It brings the care of Mr. to a different level.

Of course the idea of surgery and cutting a hole into your child is never one that parents want to come upon willingly. Doctors offer other solutions, one that involves putting a tube down his nose, the back of his throat and into his stomach. I'm not sure Mr. could handle it. I'm not sure I could handle it.

So here we are, at a cross roads if you will. I hate seeing him in pain. I hate seeing him suffer. I hate being here, and the possibility of just going home without a long term solution scares the shit out of me.

They don't teach you these things in college, there is no "G-tube for dummies" book. And there isn't a definite answer to anything when it comes to Mr. There never has been. So I guess why would this be different?  We are making the best decisions with the most amount of information and input as we can. We are just trusting and learning lessons along the way.

People see what they want to see

After an exhausting conversation yesterday, one in which I heard all about my faults, all my weaknesses and naturally all the demons in my life,  I was spent. Although I knew that what was being said was not true, it still hit a nerve and dug up all my own insecurities and doubts about my life and the choices I have made.

That is what people we care about can do to us.
That is how people who know us are hurtful.

This morning however, on a good nights sleep, a hot shower and a delicious cup of coffee I was thinking about this conversation and going over it and over it in my head. Wondering why it hurt so much? I was doubting my self awareness and decisions. Finally, I had this thought that people in my life see me in all varying ways.

There are those that see me as a grounded, spiritual person.
There are those that see me as a professional, determined and organized person.
There are those that see me as a dedicated mother, and advocate for her children.
There are those that see me as a free spirit, a creative uplifting energy.
There are those that see me as a strong independent woman.
Then there are those that only see negative attributes in me.

I was reminded that people see what they want to see. They look to others for purpose to fill in their own lives. Sometimes that is for support, or empowerment, other times its to make themselves feel better about their own choices.

I also reminded myself that I am all of those things, good and bad and that that's okay. I am a work in progress, a story unfinished... and most of all an example to those that I love.

Sadness in Greenville regarding Ferguson

For many that know me, my on line silence regarding Ferguson must be a surprise. I have to admit, with the chaos that has been going on in my life lately, I haven't had the time to really follow what it going on, but a mere log onto any of my social media sites has smacked it right in my face.

My only response? Sadness. I don't know all the facts, I am not sure of all the players but what I do know is that on the night before Thanksgiving our Nation still has no idea had to empathize and forgive. My social justice friends are posting articles in support of the rioting and violence, my other friends and family are posting articles and commentary on the exact opposite. All I ask is where is the love and compassion and empathy?

I can't begin to imagine the pain and mourning of a community that is so distraught it resorts to looting and vandalism. Regardless of the court case, this is a community that needs to find a voice.  I can't imagine the pain.

Where is our empathy? Where is our desire to find the good in all people and to say, "what can we do to ease your pain?" Obviously, whether or not  you feel that the verdict was justice, there is still a group of people in pain and to empathize with that group does not have to mean that you agree.

Pain is not black and white, nor right or wrong.

Why are we so set up to have to pick a side? I don't trust the media, I don't trust the internet.... I just feel sadness.

• Sadness that a community is living in fear, regardless of their ethnicity, regardless of their socio-economic class.
• Sadness at the loss of a child, someone's son.
• Sadness of the police office and his family, for enduring this trial.
• Sadness for the police forces sent in early "just in case"
• Sadness for communities of color who feel that they have no voice.
• Sadness for communities of white people who feel that they must pick a side.

"There is no higher court than courts of justice and that is the court of conscience. It supersedes all other courts." - Mahatma Gandhi

Hard day reminders

I'm usually boosting, what a great job I have. When I tell people what I do there are a few responses: "wow! good for you" or "oh, i'm sorry" or "I could never do that". My answer usually is that I have an awesome job, no two days are ever the same. I can be counseling with clients, or staff in the morning and unclogging a toilet in the afternoon. I can be on a conference call regarding effective legislation or making rice crispy treats with the children. I've been known to post some fun pictures on instagram with the hashtag #shelterlife, because as some of the staff say "you can't make this shit up".

There are days though that are hard. There is an emotional currency that is spent here and we work very hard at self care. Vicarious trauma is real. It affects advocates every day and is the number one cause for burn out.

We work very hard at empowering and creating an inclusive environment in which all choices are accepted. Although we hope to educate and support victims survivors of domestic violence, we work hard every day to ensure that they are able to make their own decisions . We pride ourselves on giving them all the information  needed to make informed choices.

We have very few rules. Those that are established have been made to ensure a safe environment for all of our clients. Apart from that, its their home, not ours.... they are free to live how they chose.

Often this is the first place that victims are able to make their own choices...things that most of us take for granted.... what to eat for dinner, when to go to bed.... how to dress or wear their hair.

• Seeing victims survivors feel that freedom are the good moments.
• Seeing victims survivors struggle with those freedoms is the beauty that I witness of their personal journey. 
• Seeing decisions being made that I am afraid will affect them in the long run is really, really hard.

Today is a hard day. I take some solace in that this is only a snap in time of their life.

I'm reminding myself that the universe is providing the opportunity for lessons to be learned, and for strength to be built. Often for victims survivors to grow they are taking two steps backwards to move three steps ahead....

I'm hoping they learn to cha-cha.

Sunday reflection

There's something about the quietness of water, of floating gently and smoothly on the surface of the water. A cool breeze and the warm sun. 

Frogs singing and birds in the trees above. 

The silence and stillness is relaxing. 

Self reflection and quieting of my mind is not always an easy task but out there in that moment, it was perfect.