Mastering the Chaos

It has been six months since Conley died and almost two months since I last blogged. Honestly, I think about blogging all the time, but when I sit down to start writing, there is just so much going on in my head, that I don't even know where to begin. I had lunch with a friend recently and was talking with her about how there seems to be "chaos" in my head; how I wanted to write about it because sharing my experience is important to me, but I did not even know how to start. But, saying that out loud made me realize exactly where to start. Simply starting. It does not matter where, but just start somewhere. A theme that pops up often. You have no idea where to start making sense of everything once you have lost someone, but you have to start somewhere. Anywhere. You just have to start and that will take you wherever you need to go. Another theme over the past couple months; shit, years; is that there is so much going on; physically and emotionally. So much happening; so much detail; so much information; so much chaos in my mind that I often have a hard time gathering thoughts in a coherent scheme. But, sometimes when I feel this way, putting my thoughts into words on paper can actually help me compartmentalize and manage the chaos. While at times, blogging can feel overwhelming, I try to remember that putting my thoughts into words is the only way I survived every single day when Conley was so incredibly sick. 

One of the main reasons I have not blogged recently is because I felt like I would have a difficult time writing a smooth, flowing, beautiful blog like I had in the past. Conley let me do that - he let me write about him so freely and effortlessly, because he gave me passion. Now, the passion is crippled by emotion and chaos. I worried that my new blog would jump from topic to topic and I would go off on tangents. But honestly, that is how the brain works when you are grieving; at least my brain. There is no continuity of feelings; no stringing of emotions together; and no thinking about experience to experience - well, unless you are obsessing over it, which definitely happens more often than I'd like. For the most part, everything is tangential and you are sidetracked from thought to thought - putting your feelings and thoughts into words seems like an insane idea. Then I thought, what better way to express how the last couple of months have been for me than to allow myself to jump from topic to topic. That is what it is like for someone in the middle of grief - you hear it in conversation and you see it in emotion. One second you could be happy and feel somewhat normal, and the next moment you feel like hiding away from the world. Nothing flows; it is all random. And that is okay. And the easiest way for me to blog when my mind starts working like this is to make a list. So I did. Here is a list of all the shit that has been running through my mind these past few months. Far from a complete list.

• Triggers are no joke. Especially triggers that are unknown. It easy to see how certain dates, comments or memories that pop up can be triggers and make me feel overwhelmed with emotion, but the worst triggers are the ones that I had no idea would affect me so greatly until the smack you in the face. Pretty much bulldozing over my body. Like seeing people pregnant - particularly those having a second child. Of course I am happy and beyond excited for these people to experience such a wonderful moment, and would never, ever want to discourage people from sharing this information, but often times it send me back to the moment where I felt that happiness to know we would be having a second child; a sibling for Choice. It is all we wanted. So much so that we planned the pregnancies close together. I want to sit in the happiness with them; feeling the innocence again. I remember feeling so innocent and within a matter of hours, it was all stripped away from me. All of the emotions flooding in and then spiraling out of control - to the next thought that leaves me saddened. Will we have another child? I get asked this a lot - with good intentions of course. Though, as always, our situation is complicated. I want another child - so bad. To best honest, I am not sure if we are having another child. If you asked Jonathan, he'd say no. Hell no. But, my heart definitely desires this. I want more than anything to have another baby and truthfully, I loved being pregnant. Loved carrying a baby in my belly. But for us, for our family, there are so many factors that go into this decision. Obviously, all of the emotional factors of raising another child, and at the same time, being unsure about the genetic issue or lack of knowledge regarding our children's medical needs. While there is no known genetic cause for the medical conditions with Choice and Conley, I find it hard to believe that there is not a link between the two genetically. Not knowing almost terrifies me more; knowing that another child could also be born with chronic medical complications. The last thing I want to do is bring another child into this world knowing that he would encounter so much pain and suffering. Having said that, I never would have made a different decision regarding our pregnancy with Conley, but having the knowledge I have now, there is no way I would be able to do all of this again, especially being smacked upside the head halfway into the pregnancy. I want more than anything to be able to give Choice another sibling and experience the wonderful idea of being pregnant, so this is a topic I typically obsess over. While everything in my heart desires to have another baby, to be pregnant, the idea that there is a chance, even the slightest chance, that this child could also be born with a lifelong struggle of medical complexities scares the crap out of me. Not only has the idea of raising my boys together been stripped away from me, but so has the idea of conceiving another child.
• Another huge unknown trigger - my other child ignoring or rejecting me. For a long time, Choice was all about mommy. He always needed mommy, no matter what. He never wanted daddy - only mommy. At the time, while it was frustrating and exhausting, I also felt needed and important. His desire for my love, only my love, is what kept me going - I could not let him down. Now, since we have put so much effort on providing a safe environment for Choice to balance out separation and love, he has started becoming more obsessed with daddy, and sometimes even has more of a preference for daddy. My gut tells me to be so happy that our work has produced a sense of safety and comfort for him - this was a primary focus since Conley died. But, shit, who knew that feeling rejected by your toddler would hurt so much - especially in a moment of grief. I talked about this with Jonathan and it has been really helpful, because I now understand part of his sadness and resentment the first couple of months following Conley's death. Our toddler wanted nothing to do with him and was always asking for mommy; only mommy, That is like twisting a knife into his heart.
• Speaking of Choice, every week is a different experience with him. More symptoms present and different behaviors arise, though it is hard to understand which are associated with grief, terrible two's, his strong will or his underlying medical issues. Behavior such as repetitively hitting and punching at school (yes, punching - where did he learn to punch?), difficulty sleeping, being overly affectionate with strangers, etc. Jonathan and I often talk about how well-adjusted Choice has been since Conley was born, and even more so since Conley died. He is such a resilient child and it just goes to show what amazing parents we have been to him. I will gladly accept responsibility for that because it is the truth. And sometimes, when I feel myself being a little hard on him for his transient behaviors, I have to step back and remember how much transition and grief HE is going through. We have a hard time processing all of this - could you imagine being a toddler and not understanding what has even happened?And still not having the range of language needed to fully express such emotion? Most adults cannot even put this into words. And truth be told, he should be a lot worse off than he is. The fact that he is doing so well should be my focus instead of focusing on the negative behaviors.
• I work out. Exercise. A lot. I started back into CrossFit a couple months after Conley died and have started supplementing yoga into my life as a form of therapy and meditation. Sometimes I work out multiple times a day, when I have the time. Working out has been a huge source of relief; a huge stress reliever. Exercising has been all I have know since I was young. Sometimes exercise is the only thing that makes me feel happy - that makes me feel alive. So yes, I do it a lot. Sometimes people say things like "Must be nice" and "How many times have you worked out today?" I even get the comments like, "Do you work?" and "What do you do besides workout?" I often joke how real work gets in my way of working out. Honestly, I don't take offense to any of those comments because truth be told, yes, it is very nice! It is very nice to be selfish and spend time on me. I'll admit it. I hear people say how lucky I am to workout or eat healthy. It IS nice - it IS a luxury - one that I did not have for so long - so I realize how special this time is to me. I do not see it as an obligation or a chore as I once did - I see it as a blessing that I have something that I care about and love. People would always say that it was important for me to take care of myself when I was caring for Conley - but they have no idea what that means. There was no way. Of course, at times, guilt tries to creep into my mind and makes me feel bad about taking care of myself. But, for so long, almost two years, I neglected a huge part of myself to sacrifice for my children, like any mother would. Yes, you would. Because that is what parents do. You do not think about it. If it's you or your child, you will always chose your child. I didn't take care of myself. I was not really able to - it was something I sacrificed for my child. I was not the normal pregnant woman who was able to continue working out while pregnant - no, I was in the hospital force feeding myself crap so that my child would gain enough weight to survive the pregnancy. I don't say those things out loud because that's just messed up, but it is the truth. And I would gladly do that all over again, but since I do not have to, I will do what makes me happy - I will do it when and how many times I want, as long as it does not affect my primarily responsibilities - my family. And remember, the only reason I am able to do this is because my child is dead. So, while it is amazingly nice and I am thoroughly enjoying being able to see muscle definition again and fit into clothes that have been in the back of my closest for years, it is all because my child is dead. It's been a long time since I've been able to make a choice like this; a choice for myself; a choice for my health. And I will not feel guilty about it. I will be appreciative that I have this choice.
• No one really initiates conversation about Conley. Well, a few people do. In the beginning, I sometimes felt overwhelmed with emails, texts, and messages about Conley. I loved reading every single memory, story and impact that he had on other people's lives. As the weeks went by, conversation dwindled down. It is crazy to me - it is only been six months, but it seems like the hype is over. "Seems like so long ago." I hear that often. It may seem like that to you, but I remember that my son died every single day. You might forget, but I don't. Every now and then, I have people reach out to me to talk about Conley, and I absolutely love it! Really, I do! But truth be told, his name is rarely mentioned throughout the day. All I want to do is talk about him, but when I do, I feel a sense of discomfort and awkwardness creep into the conversation. I'm not sure if that is something that I am projecting or if it is coming from the person I am talking to, but regardless, it is uncomfortable to sit in grief and talk about a child that died. Not many people can do it. Sometimes I wonder if people get annoyed by me constantly mentioning memories about him or talking about what I have learned from this experience - but then again, I don't really care. I have noticed that when I need to talk about Conley or I need reassurance that his story was real, I typically post something on Facebook to initiate conversation. So - talk about him. Mention him. It's okay, I promise. I may cry or tear up, but I am not crying because of sadness, I am crying because you remembered him and you talked about him, which brings me tears of joy.
• That brings me to the next one - I have been crying a lot. Sometimes constantly. This last month has been harder then the first five months. I am not sure exactly why, but everything makes me cry. I am not depressed, but I cry - a lot. Part of me thinks that I am crying because I am happy. Weird, right? It is a strange and uncomfortable feeling to have a sense of happiness even though your child died. I have choices, I have another beautiful child to come home to, and I have a wonderful husband that has really worked through this whole grief thing with me. Not many people can say they have all those things. And sometimes, I feel an immense amount of guilt for feeling happiness again. I am not going to lie, it was hard to find happiness when Conley was so sick. For a long time I was very unhappy - I spent time complaining about things when I should have spent more time enjoying him. It's easy to say that now in hindsight, but let me tell you, the guilt is pretty bad. So, I beg you to appreciate each moment you have with your children, even though it may suck and it can be hard and you may even feel like a failure. You may feel like things will never get better or change. They will; hopefully for the better and not the worse. Regardless, who cares - enjoy every minute.
• Grief groups rock. We found a grief group that meets weekly. This particular one is a group for parents who have lost a child. I try to go as often as I can. I am glad that as a therapist, I can promote how group therapy works for me. I have often facilitated groups and wondered if they were really effective, and now, being on the other side, I can say, at least for me, HELL YES. I I feel myself often saying "I need a meeting!" Jonathan and I alternate weeks since we have not yet felt comfortable having childcare for Choice so late in the evening. Real people who have been through the same thing. The stories you hear, the feelings so genuine, and you can talk as much as you want about this shitty experience . Everyone is crying - no one is uncomfortable. It is expected that you be a mess. It has truly been a blessing for us, and at the same time, so sad that there are so many parents out there grieving in the exact same way.
• I am so glad I married my husband. While at times, he is an ass - I was truly blessed with an amazing person. (I needed to write this one down while I felt this way so I can always come back to it and read it the next time I want to smack him). We have been through so much together - way too much in such a short time. There have been many, many times where it has been horrible and devastating and crippling; saying things that are so cruel, coping differently, and being separated from each other physically and emotionally. There have been many times where we were told that the divorce rate for parents after child loss is almost 100%. Thanks for the pep talk. To think about losing a husband AND a child - there are no words. Going through child loss alone is horrendous, but having to manage your own emotional wounds, taking care of yourself, and at the same time, somehow find a way to support another person through their grief is unfair. We have been on different pages - on different levels - so many times. Often times we still are. Each time we hit a road block head on, it brings the pain and sadness closer to home. But, with that said, we have made deliberate choices to allow each other to grieve on our own terms. He is amazing. We are amazing. We both provide each other with something worthwhile - I do not really know what it is or how long it will be there, but we make sense right now. Who knows what next week will look like, but right now, it works. 

"My soul is richer and my heart is fuller in brokenness than it ever was without."

For those who know me well, it's obvious I'm obsessed with quotes. And often times I find quotes that can say exactly what I am feeling, especially since it is hard to put it into words myself at times. As I scroll through quotes with the topic listed as "grief," I often find myself having difficulty relating wholeheartedly to those that talk about grief in a completely down or negative way. I can't really explain it, and while I have empathy for people who focus on the pain, depression, helplessness or true despair, I can't help but think that is not the whole story for me. Through the pain and sadness, I always somehow find my way back to appreciation, gratefulness and relief. Sometimes not quickly; but eventually, I get there. Maybe through avoidance; often through tears and reflection.

I've tried to understand this part of myself for awhile now; reflecting on how my brain and heart do this. Don't get me wrong, I am so extremely thankful that my soul is able to work this way, because being depressed, nonfunctional or lethargic is just not my style. I'm a cup half full type of person; I need something to keep me going. I need to move forward. And because of this, it is most crucial for me to intentionally stop and reflect on my journey. But as I grieve and support those that are stuck in this "fog" of grief, I often wonder why I was so lucky to bypass this place. Then I worry that maybe I haven't reached that part yet.

Whatever the case may be, it is what it is, and I'm trying to embrace it; just like every other chapter of this journey. I always tend to find the positive in things, or at least I search endlessly for something to hold onto. Positivity could be a defense mechanism, or a strategy that has simply worked for me. Maybe it has been a way for me to avoid getting stuck; avoid feeling lost. If I convince myself there is a positive, it eventually and magically appears. This part of my personality never been more challenged than the past few years, and more specifically, the past few months. How is there anything positive about knowing your child will be born chronically ill? What is positive about your child dying? Or any loved one dying? And is that so incredibly horrible for me to say there is positive in death? Should I hide my relief so others don't judge me? Sometimes I wonder if others think I am a horrible person because I am not hiding away in bed, crying myself to sleep all the time. 

There have been many times throughout our journey with Conley, from the very beginning when he was in my belly, that I have heard others make comments about how I am too naive simply by misinterpreting my positivity; that I don't really understand the magnitude of his sickness, or that I am not ready to face what is to come. For example, when I was in the hospital for SEVEN WEEKS before Conley was born (it was only supposed to be three weeks), I had an ultrasound every day to make sure his heart was still beating. Everyday I woke up wondering if his heart was still beating - and yet, all I could think was that I was so thankful I was not on bed-rest. I could still walk downstairs to meet friends and family, or go outside to enjoy the sun. That seven works was so incredibly difficult, but feeling pity for myself would not make it better. So, I chose to be positive - and it is like I was judged for being too happy, or too able to cope. Instead of supporting and embracing a person that chooses not to dwell on negativity, I have been judged and had others question my sanity. People who have never been in my situation or had numerous talks about your child dying inside your stomach or in your arms felt it would be best to question how I managed the situation. It's ironic to think now that this was exactly how it happened - my child took his last breath in my arms. I felt his heartbeat fade away and yet all I could think in that moment is that he was finally free.

I often scroll through my Facebook feed and see others feeling overwhelmed with their children or worrying about certain unknown circumstances. It has been told to me that the biggest challenge for a mother who has lost a child is to not let my situation cloud my ability to see others' difficulties as real; completely and fully real to them. To not judge them for making comments about challenges with their children. Because while it may be "nothing" to me, it is a HUGE thing to them; completely real and scary. People have even suggested I avoid Facebook or groups that may bring up this feeling - and then I think, if you avoid it, how will you ever cope with it? For example, during a grief group, it was said that parents who lose a child often have a hard time empathizing with others who have lost a loved one because they feel like there is nothing worse than losing a child. While I can understand that completely, I am not fully accepting. I still find myself connecting with a range of people who have lost a loved one because we all experience the same themes, such as family strains, explosive emotion and sudden intense crying spells. Regardless of the loss, these are all a part of the recovery. We all have our own ways of dealing with life and it would be unfair for me to judge someone else's grieving just because the relationship of the deceased is different from mine. And seeing others overwhelmed and in pain breaks my heart all over again, because I know the struggle deep down. I know the despair and anguish; the wondering if it will ever end, or if there will ever be peace again. I understand the constant visual of death.

Sometimes I feel like I am immune to the grieving process explained by these quotes I read because so much of my time was spent witnessing and being forced to endure the unbearable and indescribable suffering of my child. I was depressed then. I lost hope, felt weak, cried uncontrollably. I didn't want anyone around me and I was good at faking it. My therapist called this "being a good sport." I'm pretty amazing at "being a good sport." But, truthfully, I was angry and resentful. I wanted to hide away and sink into a hole because I couldn't make the pain stop. I couldn't heal him or make his medical issues disappear. I could not control anything - the only thing I could control was to fully surrender to the idea that control is nonexistent in situations like these, and the harder I fought this reality, the more unhappy life became. So, honestly, what could be worse than that? As parents, we cringe at the thought of our baby getting a cold, or virus; falling down and hitting his head. I cringed at the idea of waiting another few months for a kidney transplant or getting an infection, and now I wish I was in that position again, instead of having to decide cremation or funeral. Lesson learned! I was so far past those simple ailments that I had become desensitized to tragedy. You spend your time trying to control the small things that you forget all about the potential for big things! I felt resentment and anger coupled with fear and sadness. And that shit is hard. For my child, there was no getting "better;" no 7 - 10 days of antibiotics and you'll be fine; no light at the end of the tunnel. There was no temporary condition or fix. This was and would have been his life.

Fast forward months later, and I have found a way to laugh again, to smile, and have hope in knowing that my son is more alive now than he was for so long. He is free of pain because of me. He can now live because he has died. So, I will stay naive in my positivity. Because it's working, as it has almost always worked. Sometimes, it's annoying, I know. It is interesting to me that I was judged for my positivity when my son was alive, for being naive, and now I have been praised and admired for my positivity. The ironic thing is most of the time I cannot turn it off. This is who I am! Which probably makes it more annoying :) For months, I had so little to be positive about, hope for, or find peace in, but now, in this grieving process, I am learning another gift I was given. A chance to use different lenses on the world and revisit a life that I can make worth every second. Spending time complaining about what should have been or what should be means I have ignored the opportunity in front of me; the opportunity to be grateful for what I do have. And for me, that means I have another child who needs me to be his mother; to be his role model for resiliency as well as surrender. Don't get me wrong, shit happens and I can bitch like the best. My child throws tantrums and rarely sleeps through the night, but somehow I find the positive or humor in the situation. Complaining gets me no where; a few steps temporarily. Positivity moves me forward, with great strides. And if I'm not moving forward, I am stuck, trapped and depressed. Where do you want to spend your time? Moving forward and trapped in resentment? The choice seems easy to me.

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.