And the universe laughed in my face...

You know that saying about how you should never tell God/the universe/pretty much anyone your plans because they will laugh in your face and throw more shit your way? Well, I don’t know who talked, but you need to stop.

So many people reached out to me after I shared publicly about my struggles with depression and it means so much to me. Many people told me that they can relate and that they’re glad they’re not alone. That was my reason for sharing. As alone as I have felt, I wanted people to know that they are not alone.

I had finally found the courage to talk to a divorce lawyer. I had been occasionally donating plasma and trying to save some money to be able to pay the lawyer, because they’re not cheap, even after getting assistance through the Bar referral program. Ironically, it was this action that helps launch me into the next chapter of my story. 

Every four months the law requires plasma donations to be tested for certain conditions. When I went in at the end of July and I was told I had to speak to the nurse, I didn’t think anything about it. I’ve been donating off and on for about 6 to 8 months and I assumed it was a regular check up that they had to do. The nurse told me that my profile had been flagged due to a protein electrophoresis. OK, no big deal right? Well she said normally it’s not a big deal unless your doctor was already testing for things like leukemia, lupus, or other autoimmune diseases or cancers. So let’s back up about a month....

At the beginning of June I had gone to see my primary care physician for some really weird symptoms I was having. He had diagnosed me with shingles a few months ago, and I still had a rash/red bumps on my neck. I had been running a low-grade fever for several weeks which I attributed to stress. But my biggest complaint was that I was sweating profusely and constantly. This had gotten to the point where I would have to change my clothes three or four times a day just because I was drenched in sweat. For a while I just assumed it was because I was out of shape, which I am. I’ve been trying to lose weight but was not having any luck. Add all of that to my constant fatigue and almost daily headaches, I figured it was about time to see the doctor.

My doctor ordered a crap ton of tests, looking specifically to rule out leukemia. He also referred me to an ENT to check for oral cancer because I’ve had sores on my tongue since last summer. I saw a specialist last summer and he couldn’t figure it out. And then the kids went back to school and life got busy, and I just stopped worrying about it. My blood work came back ok, so we were kind of at a crossroads. I was going to follow up with an ENT, but the tests were not concerning.

So... the nurse at the plasma center says “normally it’s not a big deal unless your doctor was already testing for things like leukemia, lupus, or other autoimmune diseases or cancers.” 

“And what if he did happen to be testing for those things?”

She laughed. “Well, then I’d be a little more concerned.” And when she realized what I meant, she stopped laughing. And told me to follow up with my doctor on Monday morning. 

The next step was to repeat the test to make sure it was still abnormal. Wednesday morning I got a call from my doctor. Not his office, not his nurse, my doctor. And just like that I had a referral to a hematologist-oncologist. 

I went alone to my consultation with Dr. Muler. I’ve never been in an oncologist’s office before, but it’s not the happiest place on earth. Kenny was being a jerk and I figured if I was going to be on my ie I should get used to doing things on my own. I felt super confident about being there by myself until checked in. Then the nervousness set in. I texted home but I didn’t get a supportive text back. I didn’t get anything. And I felt very alone.

I left with a referral to a rheumatologist. Oncology didn’t think my blood counts were “cancer level worry” but agreed that there is something going on. His guess was the autoimmune route. I left both relieved and frustrated, at the doctors and my life. Yet again I had been reminded I did not have support from the person I should have it the most. And again, another doctor agrees that there is something “wrong” but it’s not his job to figure it out.

On my way to drop Mila off at Safe-T-City (where she told the officers they were “too boring”) I got a call from the nurse at the oncologist’s office. After reviewing my labs over the past 6-9 months, he decided he wanted to do some more tests. Specifically a bone marrow aspiration and biopsy. 

The biopsy process was an adventure on Wednesday, 2 weeks from my initial consultation. And now I wait. For 3 weeks. August 14. The day before our 23rd anniversary. 

So... I thought I had a plan. I thought I had a plan in action. But someone let it slip and the universe laughed in my face and said “here, hold my beer.” 

Haven’t you picked up on the irony of life by now?

Ag Tus

I have been thinking. And thinking. And thinking. Should I share my story? Should I let other people know what I have gone through? What I AM going through? And I finally decided. Today marks a new start in my life. One I never wanted to have. One that I never thought I'd have. One that I am so completely torn apart about, but strangely a bit... at peace with?

Why am I so worried about sharing my story? Because I have kids. I have parents of my kids' friends that will see this. Will they forever judge me? More importantly, will they forever judge my children? But one of the most important lessons I try to teach my kids is to be honest. And I have not been honest about myself. So please bear with me. Try not to judge. At the very least, let it lead you to try to understand and love people more.

Ag Tus is Irish for beginnings. I was trying to decide on a title and when I came across it, it seemed perfect. Today marks a new beginning of sorts for me. My 23rd wedding anniversary is in 6 weeks. I won't have a 24th. I'll never hit the 25th year milestone. Married at 19, it was entirely possible to reach the 50th anniversary. 75th would be pushing it, but not out of the realm of possibility. August 15. Yet I remember so many details of it like it was yesterday. It was a simple ceremony at my mom's house. Very small, early one Friday morning. We were so excited we didn't want to wait. We picked August 15 because that was the one year anniversary of meeting. Quick? Yep. But it felt right. It felt so perfect. We completed each other. So we convinced our families to gather early in Maumee, Ohio and watch the two of us become one. It was a joint decision, but one that we would regret shortly after. We were so focused on ourselves we didn't think about how our decision affected others. They should be honored to be there. But we didn't give much notice. And it turns out my in-laws were leaving for vacation that day. That may have been the first reason I gave them to not like me, to not accept me. I honestly don't know. But at 19 and 20 years old, we were selfish. I was selfish. How I wanted a big, fancy wedding, but it was no where in the budget, and I wanted my happily ever after. We both did. So in a small ceremony, August 15, 1997, we became united in marriage.

Things were good. Never really great I guess, but good. I remember waiting for him with Nerf guns in our tiny efficiency apartment. We'd grill on the sidewalk by the front door, because that was the only spot. We brought over the Cocker Spaniel dog my sister and I had gotten when I was 16 one day. Dogs weren't allowed at the small apartment, but it was just for a visit. And then she was in our next door neighbor's apartment. I don't know why that memory sticks in my mind so much. It was just such a simple day that turned into us laughing so hard together. And the day we laid on the floor and watched Lifetime movies ALL DAY. Stupid, ridiculous Lifetime movies. Together. Things were never perfect, but we were happy.

A few years into our marriage I started struggling with depression. It wasn't a huge shock - I had been battling it since I was at least 13. But it got bad enough that I needed to find a doctor and get on meds. Again, this was really no big deal to me. I had been on medications before, at 16. They seemed to help, but looking back, the stress was so different then. We were both in school, both working. Oh my God, how I wish I could go back and actually enjoy that time. But like so many others, we were in a hurry to grow up. I was told that I had endometriosis and the best cure was to get pregnant. A baby? Not in the plans yet, but oh how I wanted to be a mom. So we saw a specialist and with the magical help of Clomid, I was pregnant, due June 2000. I was over the moon. I think he was too, for the most part. But again. selfishness had taken over. I don't think either of us really thought through what this would change for us. I know I didn't. How could it be bad in any way? It was a baby. Our baby. And then he was born. Not in June, but in February. At 23 weeks. We were bombarded with medical terminology and rushed to Toledo Hospital. The maternal-fetal specialist recommended inducing labor because my life was at risk. We were clueless. Completely and utterly clueless. We hadn't even had labor classes. And then the neonatologist was there, telling us the chances of our child surviving were so remote he couldn't even give us a percentage. He had nothing but bad news. And I was sick, and K was scared. And 17 hours later #1 was born. And instead of doing comfort care, where we held him until he passed away, he cried. And the doctor said "I think we'll give him a chance." And that shattered any chance of us every having a "normal" life. Four months in the NICU. We both had to drop out of school. I wasn't working. Things were bad. But 3 days before his due date, we brought our baby home. He was not normal. He was on oxygen. We knew he was blind. We knew he would probably be developmentally delayed. And now, 19 years later, he is still our miracle child. Beating odds all the time. And while we cheered our little guy on, we became more and more isolated from the world. I remember not wanting to go out in public because he was so suseptible to germs. I actually brought my baby with me to my baby shower. Nothing was normal, but it was our normal.

The next few years are a blur. I could write numerous blog posts about #1's first few years. Maybe I will someday. But not now. For now he serves as a marker in time. A turning point in my life. Any plans I thought I had were out the window. Doctors appointments ALL the time. I didn't go back to work because I was always with #1 somewhere. We were afraid to put him in daycare because of what germs might do. So I stayed home. We both went back to school part time and our 4 year degrees turned into 10 year degrees. And along the way I lost myself. I became a mom. A mom to a disabled baby. Which is so completely different than what I had thought it was going to be. There were no play-dates. There were no happy first steps. Not for a long time. But there was isolation. And my depression took a turn. And here's my first little secret. I was finally approved for Social Security Disability, retroactive to 2002. My depression and anxiety were so bad, I could not work.

9 years later we decided that it was time to have the next child. We had waited for the perfect time. It never came. I was scared to death that something would happen. #2 was born only 6 weeks early, and was very healthy. Things were good. But I still struggled. I found a Masters degree program that was on Saturdays. I struggled through my program, ever the perfectionist. When I graduated I had a 4.0. And my anxiety was at an all-time high. Home wasn't great, but it was good. We added #3 in 2012. And in 2014 we finally added the girl, #4. And then something happened that was unexpected.

Postpartum depression. With my history of depression it shouldn't have come as a surprise. But it had never been an issue before. I was blindsided. By Halloween, I was celebrating #3's 2nd birthday and fighting for my life. Secret #2. I was a mom to 4 kids and I wanted to die. It wasn't the first time in my life I had experienced suicidal thoughts, but it was different. December 1 found me in the hospital. I went in voluntarily, and was admitted. I had no choice - I could not leave. I was released after 24 hours, which was such a relief, but also a mistake. As much as I wanted to be fine, I wasn't. And that's turning point #2. For the next 4 years I would struggle on and off with suicidal thoughts. I was so embarrassed. No one knew. And the few people that did know, didn't talk about it. The stress was awful, for me, for my marriage, for my family. I pushed people away. They were better without me. If I wasn't close to anyone, it would make leaving easier. So many times I had the thoughts that my kids would be so much better without me. If you have never been there, you cannot understand. It's not that I wanted to die. I just wanted the pain to stop. Every single day was a struggle. There would be a good few months, and then back to bad. I saw different therapists. I tried different medications. My life was a roller coaster. And so was everyone's around me.

In 2017, I was desperate. I found a new treatment, called TMS. (I see a future blog...). And I finished the treatment December 2017. And I was closer to being myself than I had been for a long time. I felt like a mom. I took my 4 kids places by myself. No one except my closest family and friends knew what was going on. And even they didn't know the full extent. But I was hopeful. I felt like I had turned a corner. I had a new therapist who was teaching me skills, not just listening to me talk about my life.

And then my marriage turned the corner. He was fed up with me. Done with me. Sick of dealing with a wife who could not do what a wife was supposed to do. How many times did he say he wanted a "normal" life? And while I felt better, I felt worse. We were never going to be normal. Not with #1. But I wasn't helping. I was making life worse. So I pushed people away more. Never intentionally, really, it was more of a protection thing. Because I loved these people. And I wanted to spare them as much pain as I could. My mom, my sister, my dad. Even my in-laws. I was so convinced that everything that went wrong was my fault. And at some point, I lost myself. And my husband lost himself. And things changed.

Looking back, there have been so many little signs. If only I had done this differently. Or if only I hadn't done this. And finally I realized that if I didn't get rid of the suicidal thoughts soon (SOON) I would be dead. And this became my goal. I hated therapy because it didn't seem to help. She would tell me things and I knew she was just lying to keep me alive. I couldn't be as competent as she suggested. There was no way I was as good a mom as she said. And most importantly, my kids were NEVER going to be better if I stuck around. I was nothing but a burden. My days blurred together. Most days I could function enough to get the kids up, dressed, fed, and off to school. I would volunteer at school. As far as I know, no one knew anything was wrong. No one knew the constant battle I was losing in my head. There were days that I just couldn't do it. And the guilt I felt on those days was so much heavier than the initial depression. I didn't reach out to anyone except my husband. I lashed out at well-meaning family members. But it was never because I was angry with them. It was always (as strange as it sounds) out of love. If they were unhappy with me around, then obviously they were better with me gone.

I knew I was losing the fight. My marriage was beyond a mess. We argued about everything. It seemed that nothing I did was good enough. At some point we had drifted so far apart, the distance became insurmountable. I kept telling myself "either get better and everything will fall into place or just die already." He told me I just needed to "find myself" and get rid of the suicidal urges.

I think the biggest smack in the head occurred on Easter evening. We had spent the day alone at home because I had lashed out at my sister because of something she did. (Another blog - they're growing!) By 6 I was in bed, feeling awful. By 8 I was driving myself to the ER. And my husband was angry beyond words. When I got there my blood pressure was low. They thought I was dehydrated so they pumped me full of 3 bags of saline. MY BP dropped lower. They ran tests. My BP dropped. I was finally admitted to the Cardiac ICU. They had no idea what was wrong. My BP dropped to 68/37. I was in and out of sleep, and I would text my husband to keep him informed. But he didn't care. He went to bed. I was finally stable enough to move to a regular room around lunchtime the next day. I was alone. I will forever keep the text from him that said "I don't care." Almost 23 years of marriage - how could he not be there for me?? How could he be so angry it did not matter to him if I lived or died? How was I such a terrible person that the man who had vowed to love me forever had no desire to be by my side? I didn't think things could get worse.

And then April 8 happened. It was the closest I have ever been to ending my life. (Ahem... another blog post). Suffice it to say that it was an unpleasant morning when I woke up. Because I wasn't supposed to wake up. I had sent goodbyes. My husband didn't care. The love was gone. I passed out in the bedroom and he left me there. I should have died. But I woke up.

And then 2 days later I WOKE UP.

I will never know what flipped the switch. I can't remember anything in particular happening. But I was at an appointment and my therapist said for the millionth time "it's NOT all your fault." She's met my husband several times. She has seen his behavior. She has tried in vain to get me to see things. But I was so sure everything was me. I have heard the phrase "people enter your life when you need them" and others like that all my life. I had a few friends that I felt had come into my life at just the right time.

But holy shit was this different. It was like a perfect storm. THE PERFECT STORM. But it wasn't the disastrous conditions I had been expecting. Rather, it was more of a DEAD CALM. It was a confluence of inexplicable events and people. If you believe in God, it was Divine Intervention. If you don't, it was the biggest coincidence of my life. One might have been a blip on my radar. Two, well that could have been maybe, possibly some sort of sign. Three... ok, that would be an awfully big coincidence... But so many things came together. And I knew.

After years and years of questioning whether I was worth living this life, I knew. I am meant to be here.

A dear friend, S, had sent me a link about toxic people a while ago and suggested it was similar to behaviors that were being seen in my husband. A friend from grade school, D, posted on Facebook about how she was finally speaking out about a violent relationship from her past. She created a private group with a small number of women who shared their experiences. And... are they talking about my life?? My therapist mentioned the term Narcissism and gave me a few sheets with behaviors on them. I met a complete stranger, H,  who was starting over for the third time after an abusive relationship. And these people understood. Then a beautiful woman, A, was chosen to accompany her ill sister to the annual Lourdes pilgrimage in France and she opened her heart and shared her experiences and offered to take any prayer intentions with her. I hesitated too long and when I emailed her, the Mass was over. But she told me they were having a service for Mary later that day and she would take my intentions to Our Mother. Now this is an entire different blog post, but for today's purposes what needs to be known is that I was raised Catholic. Religion has drifted in and out of my life. I have lost faith in God - why would such a loving God let so much pain happen? But when A emailed me back, well... it meant something more than just a reflexive response.

The world's problems are not all my fault. I am not the single cause of so many problems.

It's not JUST ME.

And as I look back over these last 23 years, I see so many examples of where TWO people made mistakes. I see so many examples of where one person made a mistake - only that person isn't always me! I am not perfect, no where near it, but neither is anyone else. And a marriage is between TWO people. And I realized that while I had been committed to making my marriage work, the other half was not. And you know what??

It's not JUST ME.

I have been talked down to. I have been ignored. I have received the silent treatment. But most importantly, I have been BLAMED. Repeatedly. For everything. And guess what??

It's not JUST ME.

And I look back at the way the person who was supposed to love me and cherish me forever.... didn't. Doesn't. And I look at the way he has isolated me, and I know it's not all my fault.I have been told how "crazy" I am, that I'm "delusional" and that I am the SOLE reason people are unhappy. And I know I'm not. And he has isolated me even more, turned his back on me even more, and you know what???

It's not JUST ME.

I firmly believe I am married to a narcissist. He has outright lied to people about me and my diagnosis to make me appear more unstable than I am. His words and actions have repeatedly pushed me down in the waves where I looked for his hand to help me. And what makes it worse? He has not shown our children what love SHOULD look like.

Yesterday, he yelled at my therapist when she tried (again) in vain to tell him it's not all me. And the anger was so instant and so hot, it took both of us a minute to regroup after he stormed out. "Well, YOU'RE WRONG!" and he walked out of that office. And at that moment I knew. He has said before he "likes to fight." And that's who he is now. And no matter how many people tell him they see these things in him, it is still all me. But now I see.

It's not JUST ME.

So finally, after putting it off for months, I found the strength to call a lawyer today. It was one of the hardest decisions of my life. My heart is shattered. It's not my job to hold broken pieces of a marriage together by myself, no matter how badly I want it fixed. And God, do I want it fixed. I love him. He is the father of my children. He can be such a wonderful person. I have seen the love he is capable of. But he is flawed. He is not willing to work on it. He refuses to accept he has done anything wrong. He continues to push everything on me.

But I am strong. So much stronger than I ever gave myself credit for.

Today has seen its share of tears, from me and my kids. And as sad as I am, I have become more and more confident as the hours have passed that this is what must be. If I could fix everything that is wrong, I would in a heartbeat. But I can't. Because I am not the only one who has made mistakes. Oh, and I have made plenty. And I hope the people that I have hurt can forgive me. But if not, that is their choice. My children are my world and it's time I really stood up for them and what they need.

And that requires me to be here. So that's where you will find me. Still cracked. Still imperfect. Still making mistakes. But no longer questioning whether I deserve to live. Because one of the few things I know for certain now is that my kids will NEVER be better off without me. I will stumble, probably fall a million more times. But I will get back up. And I can't remember the last time in my life when I felt that way.

I am incredibly sad that we will not get our "happily ever after" and that in a few weeks we will be marking our last anniversary together. But I have decided to share with you because I know it's not just me that is going through these things. And I know that just as the sun will rise tomorrow, this won't be the last hard day of my life. But it also will not be my last.

So thank you for taking this journey with me. Ag Tus - to new beginnings. They may not be what we want, but perhaps they are exactly what we need.

Some days....

I try to be positive, I really do. But when it comes to Riley, some days it's a real challenge. Like the time when he threw up Pediasure all over the place less than a month after getting our new car. Or his feeding tube comes undone and it leaks ALL OVER. ALL NIGHT LONG. That's what I dealt with a few mornings ago. For some reason he won't call me at night if he pees all over or if his feeding tube leaks all over. No matter how absolutely soaked he gets, he never calls me. He just waits for me to find it in the morning. And for some reason it's ALWAYS a school day. You know, when I have to get all 4 kids ready by a certain time or else people miss buses. Kids miss school. And I always know, because the smell hits you about halfway down the hallway. And you want to turn around and go back to bed and pull the covers over your head and wait for someone else to take care of it. But there is no one else. So you continue down that hallway, knowing what you will find. Pediasure all over the wood floor. Sticky, stinky, by now somewhat curdled Pediasure. Just waiting. And of course it's all over him and the bed. Thank God for mattress protectors. When they work. Which, of course, this time it didn't.

I love my oldest son with all my heart, but some days.... Some days I just wish he were "normal."

End of summer blues

Well we are here. It is the unofficial end to summer. The kids have been back in school for a few weeks now, homework battles are in full swing. The pool is no longer bath water and we will be closing it for the season this week. All good things must come to an end.

The weather here is about to get cooler. If it's not going to be in the 90s and have 90+ degree temps in the pool, I'm ready for the Fall. I'm ready for the evening fires, for the sweatshirts, and for the football. It's been a great summer, filled with a lot of fun. We had an awesome, amazing vacation to the Smokey Mountains. We spent plenty of time swimming and the kids have loved going to the ice cream place. Now it is time to turn off the A/C and pull out the warmer clothes. Time to pull out the warmer comforters and blankets.

It is always a bittersweet feeling knowing that summer is ending. Fall is my favorite season, but it also means more time inside for the kids and less fresh air. The days get shorter and with less sunshine, moods can get disturbed. But it is what it is.

Pick your battles: Testing the waters

Pick your battles: Testing the waters: Thinking about starting a blog.... Let's see how this works...



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Testing the waters

Thinking about starting a blog.... Let's see how this works...