Sunday, March 18, 2018

Sometimes you have no other choice than to move foward

There are somethings I forget people don’t know about me until we start talking. Like how I met my husband Robby online—something that usually draws a few laughs because the online dating world has changed a bit since the days I referred to my new boyfriend as Mr. EHarmony.

It’s been 7 years since I met my husband online. And while taking a second stab at marriage has turned out to be one of the best things I decided to do, each relationship always seems to provide its own set of issues.

We all know that no marriage or family is perfect, but we make other people think our lives are really better than they are, with staged pics on social media or the way we clean the hell out of the house before company arrives. I’m guilty of it even though I try to act like being human doesn’t bother me.

Being human sometimes can take its toll on the best of us. I’ve had many moments of being human from raising a special needs child who can’t go to the birthday parties with the bouncy houses and having to act like it’s fine because we “already had other really cool plans.” Or acting like I liked being alone on holidays or Valentines after I was divorced because I was “so much happier alone.” The time I had to go on government assistance so I could take care of my children after my divorce or trying to keep up with my richer friends in my old neighborhood and acting like I had other plans when I had to turn them down for vacation offers or weekends on the beach.

I hate for people to feel sorry for me. I hate that "pity" look you get or the way people try to “help you” by bringing over free food and clothes or offering to do something cheaper so you can join along. Over time, things like that usually mean less to you—if you’re lucky enough to learn that life is so much bigger than you and those little things don’t really matter.

And it’s the fact that I’ve always tried to avoid the pity that makes what I’m about to talk about so hard. But if I’ve learned anything through this blog, it’s that when I’m honest, I’m better and I always connect to someone else who understands how I feel. So hopefully I can do that with this.

When I met Robby 7 years ago, I learned—right before our first date—that he has end stage kidney failure and does dialysis every night at home. We joke now about how difficult it is to bring up kidney disease in a conversation, but damn it’s hard.  There are few conversations in life that can seamlessly lead to “I have end stage kidney failure.”

But, during one of our many phone calls when we first connected online,  I told him about having a daughter who has a rare disease called Arthrogryposis and how she has bilateral clubfeet and joint contractures and it makes it hard for her to walk. He said, “I understand that. I also have a hard time walking.” And I stopped talking. I was not expecting that. See, when you do the online dating thing, you do that thing where you put your best face forward. It’s part of what make the stories of online dating so funny because we’ve all had that person we met who looked nothing like the photos that were posted or who really didn’t enjoy all the activities they listed on their profile. 

So, I asked Robby what he meant, and he explained his kidney disease and the type of dialysis he did. After we got off the phone, I looked it up. I had never known anyone on dialysis. As far as I knew, it was a death sentence. I read for hours about what causes kidney disease—is it curable? Can you do dialysis forever? Does it get worse? Will you die soon?

And the big question I had to continue to ask myself as I got to know Robby better—is this something I want to take on in my life? After everything I had already been through in my life, did I really want to make a life with a person who was already on dialysis?

But as I got to know Robby and we began to fall in love, I made the decision that it was something I could take on. He takes care of himself and his medical needs and wouldn’t need to depend on me for that.  And he never has.

I had already learned that life was a gamble. There was so much about my ex that I didn’t know when I married him that came out later and ruined our relationship. With Robby, I knew right up front what to expect. There were no hidden surprises—and there are no guarantees in life. Life can change at the snap of a finger. You can avoid having a really loving relationship with a wonderful person because you’re scared his kidney disease is going to end his life super early or become this constant issue that makes your life really hard. Or you can do your research, learn the facts and move forward.

I had to make my decision before I let Robby meet the kids. I had to be really OK with the kidney disease. I knew that. I told a few people and their reactions were what I expected—Are you sure you want to bring that into your life? And I was surprised how OK I was with saying, “Yes. I am OK.”

Along the way, Robby’s kidney disease has really not been the big dramatic factor in our lives that I think most people think it would be. He has his dialysis handled and we live like a pretty normal, boring family. It does make it hard when we want to travel, and Robby can’t travel overnight on his own. But we don’t have many opportunities to travel any way.

There are days when he has no energy and just sleeps and there are times when he gets really frustrated with the whole thing. And sometimes it wears on me as well. Some days he cries. Some days I cry.  

Which is why Robby has decided to make the move to get a kidney transplant. Here is his announcement:

Right now, he is hoping for a live transplant but he’s keeping his option open and just seeing where this whole process takes us.

And while many people keep saying, “Oh that’s great. Congratulations!” It’s not really a “great” thing and it’s hard to explain that to people. It reminds me of when Veronica would have surgery and people would say, “That’s great—so now her foot will be normal?” It’s like some people believe surgery can fix everything and make you “normal.” There are some diseases that will just keep you from ever being "normal" or living a pain free life. 

And Robby has had a hard time dealing with the whole thing because it means he has to depend on another person to have surgery and give up one of their organs to help him. That can really mess with your mind. I know there are times when he feels like maybe it’s just too much to ask and he should just keep with the dialysis and see how long he can live.

We are trying to figure out how in the world we are going to pay for all of these trips to and from the hospital. How much work can we afford to miss? What happens when our insurance quits paying for the anti-rejection meds after 5 years? Who is going to help us with the kids? What happens if the transplant is rejected?

But, we are reasonable people and we know that things will work out the way they are supposed to work out and hopefully this time next year, all of these questions will be past memories and new chapter of our lives will be in full swing.

Sometimes when I’m having trouble figuring out things, I try to imagine that I am someone else and I try to think about the advice I would give that person. If we were someone else, I would say, “You have to go for it. All of those other things will fall into place. But you can’t live forever on dialysis and if you wait too long, you won’t even be eligible for a transplant.”

So, here’s to taking risks, moving forward and letting people help us. And if you end up feeling sorry for us, that’s OK.  Being human can make you do that, too.

Sunday, February 25, 2018

A letter to my former counselor and present day coward

This has been a challenging week for many of us--especially those with kids in schools or with friends/family who work in schools as teachers, administrators, police officers, janitors or other jobs in and around schools. Another school shooting. I'm not going to discuss the gun debate or my feelings on the issue but I am going to say this has been an inspiring week of watching teens stand up and be vocal. And no matter what isle of the debate you stand on, there is no denying it takes a serious amount of guts to stand in front of legislators and speak from the heart. These teens have earned the right to be angry and I think we need to search for ways to make them feel safe again. 
This week also brought about the thought of someone I used to think about a lot but haven't really thought about much lately--our former family counselor. Back in 2015, I had a big court hearing over custody. I won't go into details except to say that when you go into court, as a parent you are not allowed to speak for your children. They have to have some sort of advocate--it can be a teacher or another attorney--or your trusted family counselor who has been treating your children for the 3 past  years. 
That family counselor had told me in the past that she doesn't go to court because she had a bad court experience before. She didn't tell me this of course, until I needed her to go to court with me. She was such an important person in my daughter's care, that when I went to court that time, I did so without her--against the advice of my lawyer--because I didn't want to lose her in our lives and felt the court system would listen and protect my kids. 
If you have been to court before, you also know it doesn't play out like it does on television. You don't get to have 'your day' in court and sometimes the judge makes a ruling before he's even seen all the evidence or listened to what you have to say. 
But this time around at court, I needed the counselor to help. I asked if she would just write a letter. She refused and got an attorney and went out of town so we couldn't find her. The judge ruled that the children should go back to normal visitation and that was that. I called her office and asked her to please contact the judge and help us, she ignored me and then a few days later a certified letter arrived at my house informing me she could no longer treat me or my children. 
I was so angry. After everything that had just happened with the courts and what was going on with my children, to have someone I trust so much turn her back on my children was devastating. I could understand if she didn't want to help me, but to know what was going on with my children and then turn her back on them was maddening. 
Yesterday, I finally decided to write a letter back to her. I have pasted it below but I have removed her name and the details of the court hearing for privacy reasons. I guess it just sums up how a tragedy unrelated to you can still hit home and make you realize we all have to look out for each other because you never know when that person that you thought was going to protect your children, chickens out and stands outside watching like a helpless coward...

Dear ....,
Normally I start a letter off with, ‘hi, how are you?’ or ‘I hope this letter finds you well,’ but this isn’t that kind of letter. It’s also not a letter to rant or call you names. I honestly haven’t thought of you in a very long time. Every once in a while, I end up in ... and a thought of you pops up but that’s about it. Sometimes Roni will ask me what ever happened to you or what she should do if she runs into you somewhere, but that’s about it.

So, why write to you now? To be honest, this letter has rolled around in my head several times, but I knew I was too angry to write it. I also didn’t know if I would be pulled back into court for another custody hearing and the last thing I needed was for you to angrily come after me. You’re probably thinking, ‘but I’d never do that.’ Yes, but I never thought you’d turn your back on my children either.

Now that we’re caught up, let’s address why on earth I would decide to spend my Saturday morning writing a letter to you? Because I thought about you again these past few days and I realize I’m not too angry to write this letter to you. I thought of you when I saw the report of the armed guard at the school in Florida who got scared and stayed outside the school rather than go inside and help—even though that was his job to protect those children and it’s what he is trained and licensed to do.

Many people have asked, why did he do that? We all know he was scared. No one can blame him for having fear--But to allow that fear to make you sit back and watch children hurt is something that separates people on this planet. It’s the kind of fear that makes someone hide in her office and take the time to buy and mail a certified letter to a former patient that reads, “Mr. Wade. I will not be able to provide any services or treatment for you or your children.”

My best guess is that something happened to you in your past that wounded you in some way. That’s probably why you became a social worker. You probably in some way try to convince yourself that you became a social worker to help people—but I bet if you really get down to it, you wanted to help yourself. Just like how you wanted to help and protect yourself rather than two helpless children that needed you.  Maybe you don’t even see it that way? We never really see ourselves for who we really are, do we?

But unlike the officer who hid outside the school, you chose to continue on as a social worker. You continue to operate a business in ... and you most likely continue to treat and help families-- so long as they never need you to be an advocate for them in public. I find that very dangerous. I find it irresponsible and I find it reprehensible that you choose to carry that responsibility.

It’s none of my business why you chose to not show for court or help out and then turn your back on my children. And to be honest, I really don’t care what your reason is. You can continue to tell yourself, ‘I told her from the start that I wouldn’t go to court.’ And maybe that’s what helps you sleep at night. It doesn’t really matter the reason, the only thing that matters is that you sat back and allowed children to be hurt—psychologically hurt. The kind of damage that takes years of therapy to unravel and heal.

When something like this happens, I always try to sit back and meditate on what purpose this hurt served in our lives. Why did this need to happen? Maybe if you had shown up in court, it would have just further prolonged the inevitable and made this whole ordeal stretch out even longer, possibly causing more damage. Who knows? We’ll never know and that’s OK.

And much like my ex-husband, you got us to a point in our lives where we needed to get to. You did help us and I will be forever grateful ... for how you offered to treat her for free when I wasn’t sure if I could continue to make payments.

I’m not going to wish you well—I’m going to ask you to consider to either start advocating for children you treat or retire and leave the real therapy to people who have the guts to walk into court and not hide outside the door while children are being hurt.


Sunday, January 21, 2018

Sometimes I just get really, really mad

Another week down, another week of life lessons. Sometime those lessons make you learn something about yourself, but sometimes, they make you learn more about someone else.  

It’s a little funny to me when people say, I can’t imagine you ever getting mad—you seem so quiet.

And I am quiet a lot of the times. I don’t like to be that person at work who is always running their mouth about something or the person at a dinner party who is ruling the conversation. I like to sit back and listen and choose my words carefully. So, it takes a while for some people to get to know me.
But I can assure, I do get mad. Most everyone does at some point. Some are quick to anger—some people even find it acceptable to bang on their desks or hit the walls when they are angry. Some people let it simmer until it boils over. I’m more like the latter—the slow burn, the slow to react.

I try not to hold it all in, because when the anger boils over, it typically catches people off guard and then I get the whole—why didn’t you say something sooner? Or, “I had no idea you felt that way. You seemed fine when we talked.” 

Most the time, the my response is, I didn’t want to make a big deal about it or it just didn’t seem like the right time to bring it up. Or, I just didn’t want to hurt your feelings. And quite honestly, sometimes it’s just not worth it. I’ve done so much fighting for so long that I’m much slower to battle these days because I’d rather put my energy somewhere else—unless it’s worthy of a battle.

Like one of the things that happened this past week--Veronica falling at school and hurting herself. I do feel that it was the school’s fault on some level because I feel it’s their job to provide a safe environment for her. They are aware of her disability and the fact that when she falls, she can really hurt herself badly. So, if the floor in a certain area is super slippery and people are falling down, then you need to---as Negan would say—shut that shit down.

But they didn’t, and she fell. Several days after her fall, I decided I had enough time to think about what to say to them, so I requested a meeting with school officials. They explained they did everything they could and it was just an accident….but to me it wasn’t that simple. It was careless. You can’t tell me in one breath that the floor was so bad you had extra staff mopping all day and then say, it was just a random accident.

Also, I slipped on the floor when I showed up to get her—there was something wrong with the floor surface and it felt like butter. Which I pointed out after they said there was really nothing they could have done to make the floor safer for her. But, they spent most of the time showing ME what I could have done to prevent the accident like providing a wheelchair to prevent trips and falls and then the quick mention that they noticed in the video of her fall she looked at her cell phone screen—“she needs to pay attention when the floor is wet…” And so on.

I sat quietly, listening. Waiting. Nodding. But it never came. The words I wanted to hear—We’re sorry. What can we do to fix this? How can we make this right?

Right? Isn’t that what you say when you know you messed up. Isn’t that the human thing to say? To offer an apology and a way to make things better?

But so many people can’t say that. They spend so much time explaining why they did something or said something or acted a certain way. They defend themselves by pointing out what YOU should have done better or what YOU didn’t do even if it has nothing to do with the situation.

I get it. No one wants to be wrong. No one wants to admit they screwed up. Most people don’t like to say “I’m sorry.” And some people refuse to.

My ex used to say to me, “I didn’t hurt your feelings, you allowed your feelings to get hurt,” or my favorite—“I didn’t make you mad, you allowed yourself to get mad.” That’s worse than telling me to calm down.

But, I think on some level that is true. We can ignore people and not let our feelings get hurt--or not allow someone to make us mad.

But that’s not easy when it comes to someone you are supposed to trust, and it’s even harder when it someone who is supposed to love you back.

And what’s wrong with getting mad every once in a while? What’s wrong with blowing your top and saying, “I’ve had enough!” Especially if you know your feelings are true—because they are your feelings and your feelings are just as important as everyone else’s feelings. Right?

I don’t know if I’m mad at the school for not apologizing or I’m just mad at the entire situation. It’s hard to separate the two. I have a lot of anxiety about Veronica falling and hurting herself—I find myself laying in bed and thinking about her going off to college and falling in the showers at the dorm and I’m not there to make sure the floors are safe. I guess it’s silly in some ways to worry so much about something that might not even happen, but it is something that pops in my mind.

And, I can’t always turn that off. I can’t always turn off my worries. I can’t always turn off my thoughts. And I know, I can’t always turn off my feelings, especially when it comes to people I’m supposed to trust.  

Sunday, January 14, 2018

Hurt people, hurt people

Ok, so the blog is back. What happened? Let me try to quickly catch you up on my life--and then we can get to business.

The last time I wrote, I had lost my job. I spent the next almost year and half working from home writing. I did everything from news writing, to business writing, script writing and book editing—and somehow I paid the bills and survived. I got a full-time job at a television station as a digital producer and I still carry a pretty heavy load of freelance work--so basically, I spend everyday writing and getting paid for it which is pretty incredible in my book—especially when I look at how many people I went to grad school with who also have an MFA in Writing and work other jobs.

During my unemployment, I was pretty depressed. I spent a lot of time alone. I wished I would have continued my blog, but it was just too much stress. My blog had been used against me in court and the it seemed when I stopped writing, things would remain quiet. So, I decided to just put it on the back burner for a while, work on other projects and live my life.
It’s funny now that I look back on it. I went through the blog and unpublished the posts that seemed to make someone so mad—the ones that he brought to court in a binder. I read through those posts and realized that weren’t really that explosive. The whole thing seems silly now.
When I started this blog several years ago, the point was to tell my story. It was never to embarrass anyone or get some sort of revenge. It was to try to heal my heart—to try to be at peace in my life. I didn’t use names, I didn’t post photos. I didn’t do screen shots or anything else. I just wrote from my heart.

And I wrote my story. The story that belongs to me. The story I get to tell because of the things that happened to me—whether it was during my childhood or my troubled marriage or being a single mom—it was my story to tell.
So, as I continue to try to heal and make my life better, I am going to continue my blog because it helped me and because I had so many people reach out to me and thank me for writing it—and thank me for being honest.

It’s weird now that we live in this world where if you don’t like what is being reported in the news, you can just say “fake news” --and some people will believe you. You don’t like what people write about? Just accuse them of trying to destroy you… Sound familiar?

It’s a tool that sociopaths use and for the most part, it usually gets them what they want. And in my experience, when you have to deal with sociopaths, it’s best to not engage at all.

I realized during my last go-around with the ex that what I was doing wasn’t working—because when you have to deal with people like that, nothing works. So, I stopped. I stopped everything. I stopped the blog, I stopped fighting, I stopped worrying. I stopped talking about it. I was done. I decided I wouldn’t spend another dime on fighting. I wouldn’t spend any more of my own energy on it. Someone else could figure it out because I was done trying to make things better and I couldn’t pretend I didn’t care. I focused on healing and living the next chapter of our lives.

My dad has a saying, “Hurt people, hurt people.”

It’s a simple phrase but very powerful. The pain the kids and I were being put through was being done by a very hurt person. And there was nothing I could say or do that would make that stop. Hurt people can’t help but to hurt others. All we can do is live our lives and hope that person finds a way to not be so hurt.

Sometimes you think you have learned a lesson or something about yourself--and then once you make that connection, you somehow won’t continue to make that same mistake again, right?   When I started healing myself years ago, I realized that I try to control everything in my life. It’s something that happens when you are wounded as a child—it makes you vulnerable to spend your life with addicts.

But I can’t control everything and I can’t “unhurt” people around me. I can’t make their pain better. They must do that themselves. All I can do, is protect myself, protect my children.

And I have to remember that if someone is hurting us, it’s because they are hurt and so long as they are hurt, they will never stop hurting us. And it’s best to just stop before you start hurting yourself.