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.



My first Mother's Day without him

Holidays have been hard for some time now. We have spent a good majority of these celebratory occasions in the hospital, fighting for life. But this day; Mother's Day; it is specific to me. And this was my first mother's day without him. What a roller-coaster of emotion. I never know what to expect going into days like these; what emotion will occupy most of my time or what thoughts will pass through my mind. I usually just take it as it comes because trying to control it would be unrealistic and silly. Honestly, I was terrified of what the day would bring. I have done a pretty good job of taking time out of each day, or each week, to grieve his loss so it does not become overwhelming. Sometimes that means a few minutes and sometimes that means hours at a time.

Our Mother's Day started like any other family. My two-year-old ran into our room to wake me up and wish me a happy Mother's Day, which was obviously prompted by daddy. Funny thing is that it actually came out as "Happy Birthday, Mommy," instead of "Happy Mother's Day, Mommy." What a great way to start the day. I needed a laugh like that as as soon as I woke up, and how cute he looked trying to say the correct words. Then came the coffee and breakfast made, followed by texting and calling family members to wish them the same. I remember feeling grateful as I looked across the table to Jonathan, and then to Choice, as we all ate our eggs and waffles. I was grateful that I was able to spend this time with the family. This was new to us. Sitting down together as a family to eat. We had been split for so long, and moments like these made me feel like a normal family, and appreciate the time we all spend together. All things that seem simple to me now that we only have one child.  I also remember telling myself to bask in this grateful feeling, because I knew at some point, today would be painful. So, I sat there just a little bit longer, smiling at the silliness of our conversation. We spent most of the morning playing, laughing, and just being spontaneous. Doing what I wanted; what we wanted. Just spending time together. Going outside, reading books, watching TV.  And then came nap time. Daddy took Choice up to his room to get ready for his nap as a way to give me some free time alone, which in hindsight, is actually what I thought I wanted. I had planned to nap myself. But that is when it hit me.

I laid down in bed, tablet in hand, ready to watch my favorite shows. But my mind quickly turned to Conley. The distraction was gone and the laughter was on pause. It was quiet and I was alone. Usually, this is something I enjoy, and typically what I envision this day to be like. But, things obviously have changed. I quickly thought back to our breakfast in the morning so I could remember the feeling of happiness and joy before the obsession began. At this point, I know my grief cycle well enough that I have started welcoming it. When it hits me, it hits hard. I usually just dive into the grief so I can get through it; otherwise, I am not sure if I will make it past the heartache. And I don't want to get stuck in the grief or the heartache, because I have another child who deserves a mother who is present; especially since I was absent for long taking care of his brother. Sometimes looking at pictures and videos of Conley helps me get through the sadness, but sometimes it only makes it worse. Today was not a day that it helped to look at pictures, but I could not stop. Push through, right? I kept looking at pictures, remembering him and thinking about how much I missed him today. Remembering how much he taught me about life, about myself and especially about how to be a mother. I spent a good part of nap time crying for him. Desperately wishing I could have one more day with him or one more smile. My heart broke all over again when I looked at the picture of our final night at home, never knowing that he wouldn't return with us. I not only cried for him out of sadness, but I cried out of relief. I felt so thankful that I was not spending Mother's Day in the hospital; staring at my son on life support or watching him cry out in pain, like we had spent so many holidays. My heart also ached for the mothers who had children in the hospital on this very day; how it is so unfair that any mother should have to watch her child fight for their life. Somehow I ended up in Conley's room. I guess I wanted to feel closer to him; to let him know that I still miss him. It was in that moment that I found some comfort. There is no doubt in my heart that he is okay, and that he is happy now; that he is no longer suffering. It still does not make the sacrifice of giving my child back any easier. I finally closed my eyes and fell asleep, only to wake up to the laughter and the sweet voice of my two-year-old calling out for me. And, in that moment, I was thankful again. I made it through the grief. Coming out on the other side is always something to celebrate. It is easy to get stuck, but walking through and finding a reason to keep going - that is what makes it hard.

How is it that you can feel such extreme heartache at the same time you are feeling so overwhelmingly grateful?

Big Brother

Big brother. 

He'll always be the best big brother I know. A big brother who really never got to see his little brother, but still loved him to the moon and back. A big brother who shared his mommy endlessly, more than most siblings, even to the point of not seeing her for days. The big brother who always made sure his little brother knew how much he loved him by hugging, kissing, laying next to him, and laughing with him, even though their minutes together were numbered. The big brother who would run in the door from school and ask where his little brother was, and would be excited to wake up in the morning only so he could kiss his little brother goodbye. And, now, the big brother that no longer has a little brother; the big brother that is still trying to understand what all that means.

Many times I have thought about whether it is "better" that this situation happened now at a young age, or whether it would be easier if Choice was older. Usually, I fall on the side of being grateful that Choice maybe does not fully understand the reality of the situation. And then, day after day, I realize that he does understand; he just cannot express it like we adults do. And during these times, I wish he was older and was able to tell me what he is feeling. But, since he cannot, he shows it in his behavior and play- favorable and some not so favorable. Let's start with the favorable.

He's a bit obsessed with every baby he sees. At school, music, gymnastics, the store; literally everywhere. "Look mommy, it's a baby." "Baby, mommy. Right there." He ALWAYS wants to hug, kiss, or gently touch the baby's head, or cheeks, and of course, he does not quite understand fully what it means to ask for permission to touch other people. He just does. He pays all of his attention to the baby; sharing toys, helping the baby move or tickling the baby. That's his favorite. Tickling. He thinks it is hilarious; because his little brother always liked being tickled, so of course, every baby will like that, right? He may even push the "real" sibling aside as a way of protecting the baby, because to him, that is his baby; his little brother; his best friend. He is probably obsessed because he has not been able to do any of these things for a few months since his little brother passed away, and because he does not fully understand that he will never be able to kiss, hug or tickle his own little brother again. Yes, to you, the other mother, this might be weird and you might even be protective of your baby, looking at me with big, what the heck eyes. I get it. It's weird, and he does not ask permission, so some parents freak out about that. Germs, too. Germs and weirdness. But it's also love. And sometimes; well, let's face it, most of the time, I get caught up in the love and forget it's weird. 

Not only does he love babies, but he loves people. Old, young, black, white, blue, etc. You name it; he loves it. He may hug you or even overly attach to you. Stranger danger - what's that? Maybe he does this because he has experienced that his days with people are numbered. He has had many people come and go in his life already. Nurses, doctors, friends...all the people who used to visit and take care of his little brother religiously. He watched and took note. Don't forget about all the relatives and family friends who visited for a few weeks and spent many days celebrating his little brother. He loved all of the attention and visitors, because he genuinely loves people. But, now, everyone is gone, and no one visits his little brother anymore, and he does not fully understand what that means. All he knows is that the people are gone. So, sometimes, he clings. A lot. And fears you will be gone too, even though he just met you. He will probably take advantage of the times he sees you because history tells him time is limited. And that is also how he learned to survive when mommy was gone at the hospital with his little brother. He would find a stable attachment; someone who he knew would always be there; and cling. Until they were not there anymore. But he has seemed to expect that recently, and that is where the not so favorable comes in.

Being the mother of a son who lost his life is hard; without a doubt. There are no words. But, being a mother of a son who lost his baby brother, I am realizing that is hard too. (And then add being a mother of a special needs child who lost his special needs baby brother.) He knows, and he gets it; kind of. His behaviors are different, and the way he acts around mommy is different. During the daytime, he deliberately excludes mommy, because mommy was not there most of the days. She was taking care of little brother. So, big brother learned to adapt and play with others even better than he did before. He learned that he can be okay without mommy during the day because there are always other people there to be with him; teachers, friends, other parents. He adores his friends' parents at school, and can name every single one of them, because they brought stability to his somewhat chaotic life. He learned that he is okay without mommy during the day. And then night comes. At night, it is a different story. It is all about mommy. He screams out for mommy every night and will not let mommy leave until he is fully asleep. He literally feels the air as mommy moves away from him in bed and he shoots up begging her not to leave. He keeps one hand or foot on mommy at all times so he can tell if she tries to get out of bed. And he won't let daddy put him to sleep. Daddy cuddle, yeah right! And once mommy leaves the bed, he cries out "mommy, mommy, mommy" over and over. Heartbreaking.

And then I remember he is only two years old. Remember I mentioned that I have thought about whether it is better that this situation happened now at a young age, or whether it would be easier if Choice was older. During this time, I wish he was older, so he could tell me why he is calling out for me. Is he scared that I will leave him, like I used to in the middle of the night, to go be with his little brother in the hospital? Literally, if I was home, I used to sneak out of bed in the middle of the night to go to the hospital. Talk about splitting time between to two children - sleep and school were the only "safe" times to leave. Is he having nightmares about someone leaving him? Is he grieving the loss of his little brother? Is he confused where everyone went? Is this the product of his new medication, or a change in medication brands? (can't forget to rule that out!) Or is he just being two years old and having a sleep regression, or showing his will and control? As a mother, boundaries, routine and structure are important, but when you do not know exactly why your son is screaming out for you in the middle of the night, you question every decision. If he is grieving and fears that you will leave him, or that he will lose you too, and you belittle this emotion, then he will not see you as safe or protective? But if he is attempting to be in control, i.e. be a toddler, which could likely be the case, and you go in there to comfort him, he will learn to associate screaming and crying at the top of his lungs means mommy will come in. Who knows, right?!...the reality continues.

But what I do know is that big brother has always adjusted and transitioned well, with the help of his mommy and daddy. He is smart, independent, and strong willed. He will guide us just as he has always done, and we will listen. We will do what we need to do in order to understand what he is going through. Simple as that. The only simple thing about this complicated situation.

Thank you, Conley.

Thank you, Conley.

Thank you for helping me become more than just an average mother. For making me a bad ass mother. The mother of all mothers. The ultimate, supreme mother. A superhero mother. A mother who has the ability to understand the true value of many things, in so many ways, that most mothers will never have the chance to learn. Thank you for being my son; my baby. For allowing me to be your mother. My aptitude for compassion and empathy exploded thanks to you, as did my knowledge for life and living. You taught me about myself and more about how to understand others. Death. Trauma. Loss. Grief. Postpartum Depression. Coping. Struggle. Surrender. Survival. Letting go. Moving on. Just to name a few. I've lived and mastered many of these, thanks to you. 

Thank you for making me a better mother to your brother. He benefits every day as a result of you teaching me how to be the best caregiver, especially for any chronically ill child. Lucky for us, your brother is not as sick as you were, but he still requires daily medical care. And I'm not just talking about viruses, colds, teething or temper tantrums; all those things that eventually go away and are developmental. Thanks to you, I appreciate those things, and embrace them. I like when I see a simple cold, or new teeth, or my son showing his will for life. I embrace these milestones, because those are healthy. Yes, they are still hard, and suck, but they are temporary. I'm talking about long term sickness. The ones that are diagnosed by a specialist and forever followed. But as far as I'm concerned, your brother is a piece of cake, because you taught me strength and courage. You taught me that I am capable, skilled and patient. You, Conley, taught me that I can handle whatever comes my way, especially when it involves my children. My tool box is overflowing and continues to grow as a result of the daily lessons you provide me. You see, your brother was officially diagnosed with Panhypopituitarism in February. Yes, during the midst of all the chaos with your cancer and chemotherapy. But, thanks to you, I am not overwhelmed, scared, shocked or in denial, like other mothers may be. I know the drill and I'm on it. Because you taught me to believe in myself and understand that this is what mothers do - they take care of their children, regardless. I just happen to be a mother who has a bit more on her plate. Daily medications, specialists, procedures, ongoing shots. I have tricks now, thanks to you. But his complications are nothing like what we encountered with you, and I am forever thankful for that. You always remind me that things could be worse; always. Always. So I'm thankful it is not worse. 

Thank you for showing me how to work through, and cope, with trauma. All my career, I have "specialized" in trauma work, helping guide others through trauma, yet I never knew the depth of their despair or heartache. I never truly understand nightmares, hypervigilance, flashbacks or sudden crying spells. Now, thanks to you, I get it. I live it. And my compassion and empathy has no boundaries. I see others in pain and my body aches for them. I can feel with them and understand them. I can relate to them. I have tools for them, that come from personal experience, and not just a book. Thank you for showing me that I did not fail. Not one bit. That no one else could have ever loved you the way I did, or allowed you to be the person you were. No one else could have openly and lovingly shared you with the world that way I did, or continue to do. Thank you for showing me that I loved you bravely, and that no one else could have replaced me. 

Thank you for teaching me about balance. Work hard, play harder. Thank you for teaching me that it' is okay to play. It is okay to rest, and take care of myself. It is okay to laugh even though I am grieving. Thank you for showing me that although life is stressful, and serious most of the time, that it is okay to smile and blow kisses. It is okay to make jokes about a serious situation. Thank you for reminding me that it is okay to be sad, and miss you. Because that means I am human. But also for showing me that I have so much to live for and many things waiting for me. Thank you for helping me remember that dwelling in a bad situation or circumstance is not the way I want to live. Thank you for inspiring me to help others.

Thank you for reminding me that it is okay to feel mad, sad, lost, confused, angry, silly, happy, content, guilty, etc. That it is okay to feel weak and powerless. Helpless. Hopeless. Selfish. It is okay to not want to keep going. Thank you for teaching me that letting go can sometimes be worth it. Thank you for giving me the power to know myself well enough to trust my instincts and my gut. Thank you for reminding me that I know myself, and I know my children, without a doubt.

Thank you for showing me how to look at life through the lens of grace. You taught me to walk through fire with poise. You taught me to keep moving forward, no matter how slow you walk, because life does not wait for you to start living. Thank you for showing me that there can be beauty in almost everything, even death. That I may have to look a bit harder, or dig a little deeper, but the beauty is there if I choose to find it. Thank you for showing me how many people care about and love you; love us. How many people care about and love me.



And lastly, thank you for teaching me about love. Unconditional love. Love that has no limits to pain or suffering. Love that guides you and carries you through the worst thing that should never happen to a parent. And by all means, thank you for loving me. Thank you for always allowing me to imagine your face when you looked at me with that love. The love that you knew I was there for you. The deep love that we all strive for in life. Thank you for inspiring me to keep living our life and loving with all I have, and also teaching me that it is okay to sit in the rocking chair in your room for hours and just cry for you. Thank you for reminding me that no matter what I do, that it is enough. Thank you for telling me to not be so hard on myself; that is okay to be vulnerable and weak. Thank you for loving me and for being my son.

Duality

Today marks one month since we said goodbye to Conley; a day we will never forget. This past month has brought many opposing feelings and thoughts. An experience our therapist labeled as duality; an instance of opposition or contrast between two concepts or two aspects of something. Thoughts where you are constantly talking yourself in circles; feelings or thoughts that are completely contradictory of each other. Thoughts that cannot exist in the same sentence, but express exactly what runs through every fiber in your body. One thought completely destroys the meaning of the other, yet you feel each of them 100%. Most of us have probably experienced this more than a handful of times, from a failed relationship or an important work decision, though typically, there is an option to change the outcome. What makes it harder is when you cannot change the outcome, and you have to live with the decisions you have made. 

For me, these thoughts have taken over. Thoughts like how I would not change anything about my final days with Conley and I would give anything to have one more day with him. How I would give anything to take back the last month of Conley's life as it was full of pain and suffering, and knowing that without enduring every day of the last month of his life, I would not have come to terms with letting him go. That I would never, ever want a parent to witness the constant suffering of their child and I wonder if anyone will ever truly understand what it is like to see your child deteriorate right before your eyes. And that every, single day, I miss Conley with all of my heart and I am so happy that I never have to see him hooked up to a machine again. Feeling hopeful hearing that other children survived medical battles and being so relieved that it is not me living with the future unknown and relentless complications. Wondering that if we just prayed harder, believed more, or surrendered longer, that Conley would still be with us, and also knowing that him "surviving" and being with us did not mean that he was actually living. 

Wondering that if we just prayed harder, believed more, or surrendered longer, that Conley would still be with us, and also knowing that him "surviving" and being with us did not mean that he was actually living. This one has come up several times for me; pretty much on a daily basis. Usually when I hear others speak of how "God is good" and praising God for "saving" people or making "miracles" happen. Or when I hear people say "give it to God." I know this goes back to a previous post I wrote when Conley was very ill in the hospital. This post talked about the concept of prayer and how it can be often be misused in society; specifically about praying for a certain outcome as opposed to the process. 

I often wonder if Conley's situation was our "test" to see if we would turn our fears and worries over to a higher power; and that we somehow failed, so the end result was his death. I see other families who are facing battles, medical, financial or personal, and they talk about "turning it over to God," and often times, they seem to get result they want; it ends up being "okay." It makes me think that maybe if we would have prayed harder, surrendered to a higher power, or believed more in a God, that we would not be those parents whose lost their child; that Conley would have survived. But what does surviving mean? Does that necessarily mean that he is living? Maybe a part of me knew I did not want him to survive this experience because I knew that his survival meant more suffering. Maybe subconsciously I did not pray or believe more because deep down I knew that surviving would hurt us all, every day, for an unknown amount of time. We would be grieving and hurting every day of our life waiting for the next crossroad. Knowing that Conley would never be the "healthy" chronically sick child that he was before.

And then I think maybe we did subconsciously surrender to a higher power; that maybe we were blessed with the result we prayed for; for him to no longer suffer. My previous post asked for people to "pray for Conley's comfort, that he does not suffer, and that he can allow himself to be free of any burdens that he may have, so he can rest comfortably," and asked others to "focus our prayers around Conley, and what would make his heart be settled, regardless of the outcome." After reading over this post, and remembering what it felt like to be in the moment staring at my child suffering and battling for his life, begging for his comfort, I think that maybe my prayers were answered. And not only is he no longer suffering, we were blessed with a beautiful, loving, genuine, uncomplicated, and unique transition to the next life. What if a higher power knew that Conley deserved to no longer suffer and that he had two parents that would selflessly let go so that he would never be in pain again? What if this was the outcome we wanted, even though it is never anything that a parent would really want?

Yes, these are the conversations I have in my head every single day. On good days, I can talk myself in a circle and come to a place of comfort; a place where I have no doubt in my mind that every decision we made was for Conley; to ease his suffering and renew our hope in life. On bad days, I agonize over how much I miss him; and how we should have held on just a bit longer; that maybe one more week would have changed the prognosis. I get stuck in the sadness and heartache. Allowing myself to just be in these days; to truly surrender and accept the sadness and grief is all I can do. Because I know that tomorrow is a new day, and Conley will remind me again of all the reasons we chose this path for him, and for us. He knew that we would do anything for him, even if that meant having to let go. Letting go means he is forever okay and will no longer suffer; our exact prayer every step of the way.