Top of the world

Up the road from my parents house they were beginning to build a development of houses. The boys and I would spend hours walking through the newly cleared lots and the small paved roads. The area was vacant yet somehow the energy of what was to come was clear. Mason was 5 and Dylan was 3 and we had recently moved away from their father. We were all struggling to figure out what our new life meant and what we wanted to become. We would spend hours up there. Exploring the woods, finding the best sticks. Mason was always the leader. As the bigger brother he would tell Dylan where to look or caution him if it seems like the terrain was unsafe. He was determined and focused on the task at hand.

Fast forward 13 years and we spent the day yesterday helping him get settled into his college dorm. I could tell he was nervous when he didn't want to eat breakfast. What do you say to your grown child in these moments? As he unpacked and set up his desk, I rubbed his back for a brief moment. I didn't want him to feel that I was invading his space, but I wanted him to know that I was there and that I understood.

Several times throughout the day as we were walking around campus and completing some of the tasks I looked at him and smiled. He is still that determined and focused child. I told him I was proud of him and that I believed in him.

Its bitter sweet really. These last few years he and I have had a complicated relationship. Three years ago he moved in with his father and our time together has been sparse. Sports, jobs, school and girls were his priority so I never pressured him to spend time with me, but sent weekly reminders that I loved him and I was there.  I felt so honored that he wanted me to be there on this day.

I know he will do well. I know that his intelligence, determination and charm will help him succeed. I can't help but still see him as that 5 year old who was ready to conquer the world. I know he will.

Watching them become

It's a Friday night and I'm sitting in the grass watching my youngest play on the play ground. There's several families here and a few single parents and I enjoy just watching them  interact.

As a mother of four I've come to accept that I've been a different mother to each of my children. Partly because each of them is so different but mostly because I am. Sometimes I'm sad that my youngest doesn't often get my undivided attention, or that I don't play imaginary pirates with her. My first born got so much of my creativity, homemade baby food and hand sewn Halloween costumes. My second son and I often painted and played in giant card board boxes or had dance parties while doing chores.  My third is disabled and that has brought out a while other side of me as as mom than I could have never imagined. 

I think of each of them everyday, and struggle like all mothers with teaching them to be independent humans and keeping them safe. 

Recently, when my youngest was having a melt down from not eating and being over stimulated I told my sister.... I'm tired. She looked at me perplexed.... I realized in that moment I've been parenting for 18 yrsrs....18 years of being "in charge" and "being an example" and making decisions. 

I speak to parents who have older children and am told it's never anything you stop doing. This both terrifies me and fills my heart.


I am often amazed at the young men my older two are becoming. I know that being a parent means letting them go, but each time they leave my house, my hug or my phone call, I feel like time is slipping away. I feel like the moments of them needed me or looking at me for guidance are now fleeting. So yes, I may be tired, but not tired of them, or of being a parent. Not tired of hearing them say mom, and certainly not tired of watching the miracle of them becoming.

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.