What do you want...continued.

Part Two

“What do you want?”

“Me? Wait, I can want something? And wait, someone is specifically asking ME what I want?” It has been a long time since I have had someone ask me what I want. No fault of anyone’s really; the circumstances just did not allow for that. (I will elaborate on that in Part Two). So, now, when I am asked what I want for the first time in years, I have nothing to say. Nada. Just numb and quiet. Like a little girl waiting for her parents to answer for her.”

And then I started having this cynical inner dialogue:

Do people really get what they want? Is that a trick question? Expectation leads to vulnerability, heartache and pain. I’d rather not want anything because then I cannot be disappointed or hurt. It’s easy to just BE and let life happen to you so you don’t get let down. Because shit happens regardless of how hard you try, how healthy you are, how much money you have and how much you WANT IT. It may be easier to tell you what I didn’t want. The list is too long, so let’s just hit the highlights. I didn’t want to spend seven weeks in the hospital when I pregnant wondering if my child would survive another day in utero, while being separated from my husband and toddler. I didn’t want to have daily conversations about death as I was pregnant. I didn’t want to have my newborn child immediately transferred to a specialty hospital while I laid in my hospital bed unable to walk. I didn’t want my son to have lifesaving surgery when he was just days old. I didn’t want to watch my child battle kidney disease by requiring daily dialysis, being forced to stay in bed for 12 hours at a time. I didn’t want to watch him endure 13 surgeries, 26 blood transfusions, or have tubes stuck down his throat so he could breathe. I sure as heck did not want him to be diagnosed with liver cancer on top of his kidney failure, or to be exposed to chemotherapy that produced neurological damage. And I definitely did not want to make a decision about forgoing medical intervention for my child, meaning that he would no longer be physically here on earth. I didn’t want to be a part of that club – the club of grieving mothers as a result of child loss.

I also didn’t want to become a passive receiver of life. To be someone who just rolled with the punches and took news as it came. I wanted to believe that I had control; that I had the power to save my child from these painful experiences. I wanted to believe that I could advocate and fight with him. That I could take away all of his pain and heartache. I didn’t want to avoid my own wants and needs; I didn’t want to put my career on hold, stop working out and eat cafeteria food every day. I didn’t want my child to be stuck in hospital bed for months at a time, regressing developmentally and never seeing the sunlight. I also didn’t want to be that person who believed that things just happened to you or that you had no control over your circumstances. I fought this for so long – I wanted to believe I had control. I wanted to believe I had the power and the tenacity to push through this disease WITH and FOR my child; FOR my family. But one of the most powerful lessons I learned in all of this, is that the MORE I fought, controlled and powered through, the LESS I was actually doing for my child and for my family. The less I was able to do for my family physically and psychologically. I was fighting a fight that was never ending, and I had to choose which battles could be won. The minute I accepted and surrendered to what was, I became more present, healthy, aware and available. I was able to give my child more once I stopped fighting for an unknown.

I was never someone who just let life happen. I never just let things run over me because they could (did you ever see me play soccer?!). I was never someone who just settled for easy. I didn’t used to be so docile; so submissive. I did have goals and I did want things. I did have a vision for my life, my family and my future, but those were stripped away, and tossed aside. Not all at once, but slowly, day by day. For the past two years, life and society have let me down, and showed me that the wants and needs are just that. My wants, desires, visions and dreams did not matter. I was living in the moment, day to day, in survival mode. So was my child, and so was my family. Having less wants, desires and expectations helped me survive. I came to accept that while in survival mode, there was no room for wants or needs.

Therefore, thinking about a life projectory was not relevant for me; that ended up being my husband’s role. He was the bigger picture person keeping our family financially stable, and I was the small picture person, making sure we all survived the day. Making it through the day was the goal; was MY goal. Psychologically and physically making it to bedtime was all I had planned. And actually, making sure we all survived the night was also my goal! Carrying my baby to full term ALIVE was my goal; that was my job, and that was my vision. And once he was born, learning his illness and being the best caregiver I could be was my goal. So, my future, or what I wanted? Please. That was not important. It was not a priority. At least it wasn’t at that time. The split partnership that happens in a marriage when you have a chronically ill child can actually be very conducive. We all fight it and pretend it won’t happen to our family. I know I fought it. But truth is, in order to survive, you needed to split roles. Not only do you need to split roles, but you need to be completely present in the role that you have, and that means that sometimes you need to forego personality traits about yourself that you may not want to give up.

Now, don’t get me wrong. Having a chronically ill child did not make me become someone who lacked vision or dreams. But that sure as hell changed the way I altered my future. It also changed the way I altered the importance of my role in my future. I thought long and hard about this concept. And it dawned on me, for most of my life, I have put the needs, wants and desires of others before my own. I did not allow people to walk all over me, but was, and am, very sensitive to the needs of others. Like most things, that can be considered a strength, and it can also be viewed as a weakness. I like to call myself flexible, accommodating, considerate; you know, someone that goes with the flow J A nice, positive spin. And I truly believe that having this type of personality is what made me such an amazing caregiver for Conley. I had to be flexible. Someone that could adjust to the circumstances. Follow someone else’s lead. Because starting almost two years ago, my goal changed. My goal was to save my child’s life and give him the best life I could. So, when I was pregnant, the doctor told me how to save my child and give him the best chance for a healthy life. And that meant spending seven weeks at the hospital, away from my family, so we could be monitored closely. And when he was born, and the hospital told me I had to master a list of procedures before I could bring my son home, you better believe I was at the hospital every chance I could to take a crash course in pediatric nursing. And when every specialist said you will come to this appointment on this day and time (because the schedules were so full you did not have the luxury of choosing an appointment time that fit your schedule), I cleared my calendar. And when I was told I needed to give my infant son daily shots for him to live, I got over my pain and sadness of having to hearing my baby scream at the mercy of my hands. And when it was decided that it would be best for me to quit my career that I had worked incredibly hard to establish, I swallowed my pride and told my boss that I was taking family leave indefinitely. The list could go on. There were all choices I made to get to my goal – the goal of creating the best, happiest and healthiest life I could for my child.

On one hand, the fact that I am the type of person who can blend in to the needs and wants of others, someone who puts others before myself, worked to my advantage. So, of course I was triggered when someone challenged that personality trait of mine. My son thrived BECAUSE I was that type of person. Eventually (despite putting up a huge fight to keep my own wants in the picture), I realized and accepted that in this moment, with the goal of keeping my child alive, there was no room for my wants. I was at his mercy; I was at the mercy of his illness. Ready and willing to go when needed. And I became really good at that. Exceptional, actually. To the point where I completely accepted that what I wanted and needed did not matter. 

That was a deliberate choice. I chose not to pay attention to my wants and needs. Why would I continue to want things that I knew were not possible at that time of my life? That would just be silly and exhausting. Let’s face it, I wanted to spend more time with my husband and older son, but that was not an option most days. I wanted to spend time as a family; all of us together. I wanted to be able to process and talk about decisions as a family. I wanted to work in a profession that I loved. I wanted to see my children completely healthy. I wanted to sleep at home in my bed with my family. I wanted to take away all of his pain. I wanted to be just a mother, not a pediatric nurse or case manager. I wanted many things. But I made a deliberate choice to alter my wants so that we could give our best effort to survive this fucked up situation.

But now, that role is over. I do not need to be that person anymore. Being at the mercy of complex chronic illness is not needed anymore. And while I have the option to want things, desire things and have a vision, the adjustment is not that easy. Just like adjusting to becoming the caregiver to a medically complex child, you can’t master than in a day, or in a month. It is a process. I spent every day mastering that role – all of my time, energy, and emotion – to make sure I was ready for anything and everything. I reprogrammed my brain to think about life and expectations differently. I made myself think about death and loss. I altered personality traits to become a more effective caregiver. I told myself over and over that my opinions, feelings, desires and wants were not important – and that they would eventually lead me to pain. It is like a self-form of emotional abuse, but a healthy form maybe; like emotional awareness. Emotional awareness for survival mode. So, now, learning to be okay with wanting something and desiring something is a very difficult concept for me to understand. Rebuilding my brain and convincing myself that it is okay to have wants again is scary. I’ll admit it. I’m scared and anxious. What if I want something so badly again, and I work hard for it, and achieve it; and then it is taken away from me all over again. I don't know if I can handle that. The crash and burn was devastating the first time around; I don't know if I have the strength and courage to put myself back out there. It is hard to change the way you think. I’ve learned to live in a role where I was just BEING, and sometimes, it’s easy to just be; to just follow someone else’s path, because you can’t be let down. Pain is expected and heartache is inevitable. But deep down, I know that is not realistic, and not the person I was, or choose to be. So, I told myself to start changing my thoughts slowly – be gentle with myself as I make this transition, yet again. For now, the most important step is to want to have the confidence to want things again. That is where I will start.

What do you want?

Part One

Today in therapy, a question was posed to me. “What do you want?” To be fair, we were specifically talking about visions I have for a financial future, but the more I think about it, this is a general question that I am struggling with currently.

The response in my head: “Me? Wait, I can want something? And wait, someone is specifically asking ME what I want?” It has been a long time since I have had someone ask me what I want. No fault of anyone’s really; the circumstances just did not allow for that. (I will elaborate on that in Part Two). So, now, when I am asked what I want for the first time in years, I have nothing to say. Nada. Just numb and quiet. Like a little girl waiting for her parents to answer for her.

I did not even know how to go about answering this question. Of course, the conversation continued by discussing how it is important to know what I want, what I desire and what needs I have, and that it is OKAY to have wants, desires and needs. That it is important to have a projectory of my future and a vision for my life. A vision for my partner, for my children, and for my family, so that I can work in conjunction with my husband. That having a vision for certain things will make me a better partner, rather than simply just participating in the vision or future that was created for me. I sat there feeling annoyed that I was potentially being viewed as someone who does not have a vision or a desired future. It was upsetting to think I may be viewed as someone who was JUST BEING. I know this was not the implication, though it made me dig deeper as to why I was being triggered emotionally.

The thoughts continued long after therapy was over. I started thinking about what I wanted and I had no idea. It was really daunting and disheartening for me to not know or be able to verbalize what I want for my future. I mean, I haven’t always been like this. I've had goals my whole life. Lots of them. I’ve had visions, dreams, and ideas. I’ve had wants. But sitting here today, when someone asked me what I envisioned for my life, I was confused. I was speechless. I spent the night trying to remember the ME before stepping into a lifelong partnership. The ME before children. I tried to remember what I wanted from that partnership; what I wanted for my future.

Like most people, I learned from my own experiences what I envisioned for my life; what I wanted out of relationships with friends, family, and most specifically out of a partner. We all develop an idea of what we want for our own family, career, and our children. I was fortunate enough to have a realm of support throughout my childhood; financial, emotional, educational, physical, etc...During most of my childhood and early adulthood, I was able to get what I want, relatively speaking - in the sense that I had the ability to work toward a goal that I could accomplish. I set goals and I accomplished them, despite the curveballs. I wanted to play and excel at multiple sports, travel around the country to participate in events, and I did. I desired to be educationally challenged and supported when I struggled, and I was. I envisioned having the freedom to choose between right and wrong, become an independent woman, while learning my own consequences, and I succeeded. Despite challenges and obstacles, surrounded by supporters and by haters (yes, I had those too!), I accomplished the dreams I had; athletically, professionally and personally. I was recruited and played soccer at a Division 1 Program, winning a national championship. I found a passion for psychology and working with disadvantaged and at-risk children, leading me to find a profession in Forensic Psychology. I became Dr. Poole after TEN years of consistent, relentless schooling. I moved across the country by myself to a state where I had no family or support just to "see" how I could survive on my own and learn who I was outside of my comfort zone of California; to grow personally and professionally. I was lucky enough to have the ability and opportunity to choose a path I wanted. And while there were definitely bumps in the road, I somehow found my way to the goal; I found my way to the vision.

Thinking back to almost five years ago, I was living the life I had always wanted, imagined and worked my ass off for. I was one of the most sought out Forensic Psychologists in the area, at my peak of my athletic ability after finding my love for Crossfit and about to marry my best friend. This was it. This is what I had imagined. When I wanted something, I worked for it, and I got it. Simple as that, right?

And then it came to starting a family. I think back to what I wanted for my family; my future. Those of us who want families, we all have a fairy tale in mind. I wanted at least two children; maybe three. To be honest, the thought of wanting or hoping for "healthy" children was not on the list. I mean, I was healthy, so my children will be healthy, right? I wanted to be a working mother, who set her own schedule, so I could spend as much time with my children as I could. Go to games, participate in school activities, play hooky, etc. I wanted to have a career I was proud of and be a professional that others pursued. I wanted my children to be close in age so they could grow up together, learn together, play together and have each other to lean on. I wanted my children to grow up to be best friends. I envisioned giving my children every opportunity necessary to reach their goals, whatever that may be. I never thought about physical limitations or worried about health complications. I wanted my children to be able to do whatever they wanted – dreams and visions that were endless – with no constraints. I wanted a husband and father who was present with his family. To watch and see how much love he had for his children, and how much they admired and looked up to him. I wanted to be able to eat dinner together at the table and play soccer or baseball in the cul-de-sac. I envisioned creating our own holiday traditions, going on vacation to tropical islands, and experiencing life together as a family. I imagined sleeping and cuddling next to my best friend every night, while we watched the monitor and talked about how lucky we are to have a healthy, beautiful family. This is what I wanted for my family.

It felt good being able to reminisce about what I envisioned for myself professionally, while also having dreams for my partner and my family. I was happy to know that at some point, I did have goals, dreams and wants. I knew they were there. I just had to remember and truly get back to the ME I worked so hard to be.

And then after all of that thinking and remembering, a thought came to me. It is a thought that has been there for several years. Do you really get what you want? I used to believe that you could have whatever you wanted, that the possibilities are endless, as long as you asked for it or worked for it. That made me understand just how naïve I was…

To be continued….

The dust has settled

I now get what they mean when they say grief comes in waves. But, I also think for some, or at least for me, it comes in chapters. Maybe for those who know the end is near, or for those who have witnessed firsthand the suffering their love one endured. Or for those who have felt the ongoing struggle of bad luck that life sometimes hands out to the chosen ones. The ones that pray for a break and ask for some sign that this is all worth it.

My first chapter began the minute I knew in my heart that this was the end. The feeling deep down that told me this was not the life Conley wanted, or deserved. That chapter started the day Conley was admitted to the ER after he stopped breathing. I remember that day clearly. It was a Monday, and we had just been discharged from the hospital that same morning. Conley was eventually placed on life support and discovered to have multiple lesions in his brain. While all I wanted was answers, in the bigger picture, the reasons for the neurological damage would not have changed the feeling I had. The feeling that day was different from every other time he was hospitalized. That feeling would not go away, no matter how many times I changed the story in my head. This time my heart knew this was it, but my mind was still trying to take over. That is when my first chapter of grief began; when my heart needed to convince my brain that this was the end. And boy did my brain want to win. But the heart prevails and knows the truth. My heart knew that the facts were not as important as accepting the truth that I would never see my son lucid again. 

Transitioning away from the suffering and toward a life of peace and comfort began the second chapter of grief. This was the time where I had accepted our reality, and I chose to enjoy my son, solely as his mother, and no longer needing to spend every waking moment advocating for medical intervention. It was just me and him. Me and him together. I was his mother and he was my child. No kidney failure, no dialysis, no cancer, no neurological damage, and certainly no chemotherapy. It was a time for me to celebrate his life and share his beautiful soul with everyone who loved him so much. Ironically, this chapter brought an immense amount joy and peace to my heart. The sadness and pain that we felt for so long were pushed to the background. I had plenty of time for sadness in the chapters behind me and the chapters to come, but this chapter was about genuinely and wholly feeling his warmth and spirit. Seeing and feeling the love for Conley brought many happy memories. Memories I needed to continue moving forward. I spent this chapter enjoying every second of every minute I had left with him; not worrying about the next crisis we would encounter.

Then came chapter three. I spent a good amount of time in this chapter. Feeling thankful there was no more suffering; that I was no longer being forced to witness my own child's pain and heartache. No more feeling helpless and hopeless. Relief that it was finally over and his new life could begin. Knowing deep in my soul that he was at peace. Anytime I felt sad or angry, I would turn to feeling thankful and absorbing the relief that I was not taking him to the doctor day in and day out to be stuck and poked at; to be given another medical label. Feeling relief that I no longer had to spend every single day and every single night wondering if this would be his last day, or what news we would encounter; or even if he would make it through the night. Living in a state of complete surrender, yet still fighting every minute of every day. Being on high alert; constant trauma - all done. Feeling thankful that I could finally breathe deeply and sleep soundly, or spend time at home with my husband and other child. Doing things I had not done in years simply because there was no time or energy. This was a good chapter. Ignorance really. I was "free" for a bit; I could do what I want, when I wanted, and how I wanted. But then when I was ready to "go" again; to get back on the grind and advocate and fight the fight with him, the reality that there was nothing to "go" for, and nothing to "fight" for, finally settled in. Now that my "break" was over and I had the chance to step away from the suffering and pain, I was ready to take on the world. And the realization of my world with him no longer there, ended this chapter. The sadness and heartache became too strong to focus only on the feeling of thankfulness and relief. And the shock is over.

Here I am now, in chapter four, still trying to understand this phase. There is a lot of sadness and at the same time, there is a lot of hope and fulfillment. I cry every day. Sometimes multiple times a day. Most of the time it is in the car, when I am alone. I never would imagine that being in the car alone would be such a trigger. I mean, it makes sense. I spent most of the past 13 months in the car going somewhere with or for Conley. He was the reason I was in the car every day and what was on my mind when that engine started. Driving to appointments or to the hospital, or picking up medications. And, he was typically in the car with me. Every day I was in the car with him. So, to get in the car, alone, without him, is possibly the most painful part of this chapter. For weeks now, I have cried every single time I have been in car alone. Every single time. As soon as that engine starts and I pull out of the driveway, the tears flow. There is no distraction when I am alone, except music. And we all know all music does is amplify the current feeling! So I just cry. 

This sadness does not stop me from getting in the car alone, because most of the time, when I am in the car alone, it is to go to a place of comfort. To see other people who bring me hope and meaning. To be with another community that keeps me going and does not let me hide in my tears. It is safe to say that most people do not know that I cry the entire ride to see them, because I am pretty good at pulling myself together before I step out of the car. But even if I did not hide it, I know these people would understand and accept it regardless. 

Although being in the car alone is likely the biggest trigger I have, there has never been a moment when I thought about not opening the car door and starting the engine. I think back to how many times I did not want to get in that car to take Conley to the doctor, or the ER, or even to chemotherapy. I always wanted to skip moments like that; but I couldn't. Because that is what my son needed to live. He needed daily care and life sustaining intervention, and he needed me to drive him there. So I pulled my shit together, got in the car, started the engine and drove. I drove to whatever doctor we were scheduled to see that day; because that is just the way it had to be to keep putting one foot in front of the other; to get to a bigger goal, whatever that was at the moment. And what I realize is just like he needed that daily care and medication intervention to live, I need the people and the things on the other end of that solo drive to keep me moving forward; to keep me putting one foot in front of the other; to get to my bigger goal. Whatever that may be. I am still not sure what the goal is, but what I do know is that it is not sitting at home on the couch by myself. I need that place and those people on the other end of my car ride in order to live; in order to be me, and carry on the life that I would want for my son.