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.