Fairwell until we meet again.....

I first met my sister in law on the very first date her brother and I took. He took me out on a motorcycle ride throughout Sullivan county to some of the most beautiful spots I had ever seen. At the end of the day we went to a party where his entire family (he is one of 8) and their friends were celebrating his brother's last night bartending at a local bar. Risa greeted me with a smile and then promptly picked me up and swung me around. To say I may have been a little intimidated is a given. She then put us in a back room alone so we could eat and brought out a candle. In the conversation of where we went riding, she turned to me and said "good thing he isn't a serial killer!"

For the last 11 years she has ebbed and flowed throughout our lives. We had wild nights where she filled up my Father's bar with black rubber smoke as she burned the tires of her F250 Ford Truck. We danced and laughed so many times and I cannot count. As our lives changed and we had our children, she became a support for us. Countless trips to Westchester for therapies for Walker, she was there to watch and entertain Sawyer.

Sure she was a Harley riding, wood splitting country girl and no one wanted to be on her bad side. (she taught me what a swirly was) But there was also a side of Risa that was sweet, vulnerable and giving. She made everyone feel like they were her best friend.

She fought hard to keep her dignity and character while finding her true self. She was the glue that kept many of her siblings and family together.

She fought long and hard against cancer. She kept her smile and her humor all the way to the end.

After her passing this week, I spoke to her. There were so many people who came out to honor her, so many people who loved her. I am not sure she knew that before, I am not sure if her tough skin allowed her to recognize  that she was an amazing and beautiful woman. I am not sure if she knew how important she was to so many. I am not sure she knew that she was my idol and that I lived vicariously through her stories, friends and many, many, rides.

I am not sure she knows that I see so much of her in Sawyer, in her tenacity and beauty. I am so thankful that she was in our lives, and so thankful that Sawyer and my other children knew her and know another version of being a woman. That strong, wild and free can be combined with softness, love and laughter.

What you dont expect....

Grief is a cycle, one that has many stages and can surprisingly switch between them at any given point for no obvious reason. Parents of children with special needs go through a grieving process. They grieve the life that they had envisioned for their child, or the relationship they wanted for the siblings. Sometimes its about grieving their retirement and the new realization that they won't get to be jet setters.

For me, I've come to believe that I am in the stage of grief with Walker of acceptance. I have accepted his abilities, the life that is before him and the responsibilities that places on me and his father. I have felt that this acceptance has become a stability for us all.

But am I doing Walker a favor by "accepting" his condition? Has this made me complacent in reaching and searching for new goals for him? Has this created a space of energy in which miracles cannot happen?

Yesterday I was reminded of the power of the divine. The power of prayer and the power of creating a future within myself that can become true.

I am continuing my spiritual path and this weekend had the true honor of working with a group of women who nourish my soul. I am in the process of becoming a minister. I set out on this quest in order to protect myself legally from the energy and spiritual work that I do, but what I found was something much more powerful.

I found hope.

I was reminded that what we put out into this world can manifest into blessings. The power of thought/prayer and visualization can be amazing. The universe provides us with the answers, they just may not come in the form we expected.

I know I will be reporting great things in the months to come.

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.