Ink Through Ashes

If you are interested in continuing to follow my blog, please go to Ink Through Ashes.

A legacy to remember, and we have proof!

As I mentioned in a previous post, the paper our fetal specialist, Sina Haeri, wrote about the amnioinfusions we had during our pregnancy with Conley, was recently released. It was also co-authored by our nephrologist, Kartik Pillulta. And get this, the DAY the editor gave Dr. Haeri the green light to publish the paper was March 18, 2016 (though it was officially released later). But, seriously?! I do believe in coincidences at times, but not this time. This meant something; no doubt. That same day our beautiful Conley became an angel at 2AM, he started helping others on their journey. Conley's legacy lives on, as will his buddy's Barrett, who is the other kiddo discussed in this paper. Barrett is still doing well on peritoneal dialysis and is on the transplant list!!

A picture of Dr. Haeri and his boys, Barrett and Conley.

These kids (and doctors) have done, and will continue to do, amazing things for our medical community. Below is the link: 

Serial amnioinfusions for fetal pulmonary palliation in fetuses with renal failure 

To give you some background for the paper, since it is definitely written for the medical community, I found some excerpts from previous blog posts. If you want more information, feel free to read back to earlier blog posts. 

December 22, 2014

During our 20-week anatomy ultrasound, we found out that Conley was diagnosed with a bladder obstruction called a Posterior Urethral Valve obstruction (PUV). Initially, his bladder was full, but he was unable to urinate, leading to a back-up into his renal system, mainly his kidneys. Over the course of the first couple weeks, we found out that Conley was actually able to urinate, and that the obstruction was considered "partial." However, it had appeared that the damage to his kidneys had already been done, as he was not creating new urine at all. Starting at 20 weeks, babies need to urinate in order to produce amniotic fluid; however, given that Conley was not producing urine, he was unable to create amniotic fluid, which is needed for growth and lung development. At this point, we knew that Conley had some kidney damage; however, the extent of the damage could not be adequately measured until his birth. We knew that there was a possibility for dialysis and eventually a kidney transplant. 

Given the complications with low amniotic fluid, I had to be monitored on a weekly basis, having multiple ultrasounds to make sure that Conley was doing okay. I also had several (5 to be exact) amnioinfusions, which is a process where saline is injected into my uterus every couple weeks in order to make sure that Conley had enough room to continue building his lungs and growing adequately. Three of these procedures included spinal blocks, as any one of them could have induced labor. We are lucky that every procedure went well, and we were able to give Conley the tools he needed to build his lungs, while all along allowing me to continue living life at home. I had my last amnioinfusion at 30 weeks. It was not possible to continue the amnioinfusions past this marker as the risks were greater than the benefits. It was a blessing that we were able to do this much for Conley, and mommy was able to stay at home with the boys and continue "regular" life as scheduled.

February 19, 2015

Oh, and one more HUGE victory. Conley was finally taken off oxygen support and is now breathing room air on his own. This is such a great step and very comforting for momma as this is the reason I had all of those procedures (amnioinfusions) throughout my pregnancy. Hopefully, we won't have to worry about his lungs anymore unless an excess of fluid starts to put pressure on them. The doctors were saying that it was good that Conley had a "good set of lungs" so that he could maintain some healthy respiratory status when he was overloaded with fluid. Phew. Great news. He is breathing comfortably now and it is amazing to see his beautiful face now. Though, he still loves his pacifier so much that he won't give it up unless he is eating!

Holy crap follow-up

A follow-up to my recent blog: please, please don't think that you said or did something wrong, and by all means do not step back or stop contacting us. The last thing I wanted to do was discourage people from reaching out. If we aren't ready to talk, or it's one of those bad days, we won't respond right away. We will when we are ready. I truly just meant to be a voice for someone in my situation; to share all the things we feel and what we go through. It's overwhelming trying to keep everything together. As I said, anything is better than nothing. Even if anything is wrong. But anything can't be wrong if you are just yourself. And honestly, if I was in your position, I wouldn't know what to say either. Or what to do. But, what I would hope is that all I have to do to is be real and genuine. To be honest and caring. Because that's all anyone wants.

Holy crap

I know it has been awhile since I blogged. To be honest, I have started and deleted posts over and over because none of it sounded right. None of the words captured what I was truly feeling or experiencing. I wish I had something profound to say, or some eloquent way to express how this past week has been, but I don't. What I do have are a series of moments that I think are worth sharing, because they capture the complexity of this journey we are on. Every happy feeling eventually is overshadowed by sadness or pain. But then every moment of heartache is met with joy and comfort. This cycle happens literally every moment. It hits you from no where and you cannot stop it. Things that would seem to make me sad actually leave me hopeful, and simple thoughts end up being the most catastrophic. To make it simple, here is what this past week has captured.

• Guilt. There is a lot of guilt. Guilt over everything and anything. I somehow find guilt in every situation; every moment. From not returning a text from a close friend to feeling relieved that Conley is no longer suffering. My therapist asked me to start writing down things that produce guilt, and that list keeps growing. Sometimes the guilt drives me to be more productive, like going to yoga, crossfit, or meeting up with a friend for lunch. But sometimes, it drives me to isolate and withdraw. I have found myself at times sitting down on the couch or laying in bed just starring off into space or being in my head. But regardless of what is happening, guilt seems to be the driving force. Even this blog post.

• Obsession. Tons of obsession. Replaying conversations in my head from the last week of Conley's life. Replaying the moment he woke me up in the middle of the night so I could kiss him one more time. Reliving conversations about what happened, and how fast things changed. Wondering how he was so healthy and stable, and then out of no where, infection, cancer, clot, death. How cancer and chemotherapy were supposed to be "easy,"  and we were "lucky" that it was liver cancer. Obsessing over stupid things, like what to do with all my left over frozen breast milk or how can I make the most of Conley's medications before they expire. Obsession over everything.

• Worry. This one is huge. My biggest fear and worry is that I will forget things about Conley. I watch videos of him constantly so I won't forget him. I go into his room every day, sometimes for hours, and sit there with my eyes closed imagining him. I sit on the rocking chair pretending to hold him, like I did the last night before we were admitted to the hospital. I imagine his smile, his laugh; everything. You know those things your child does that you love the most - to the point where you prompt them over and over just to see it. So you can capture the perfect video of this "thing" they do that you love. I loved when I asked Conley if he wanted me to pick him "up," while pointing my thumbs in the air. He ALWAYS smiled so big because he knew that he was going to be held. He always wanted to be "up." I replay this in my mind over and over so I don't forget. I worry I will forget this. I worry I will forget the way he looked at me, and how he was happy. I worry that the last four months of hospitalization, surgery, treatment and medical intervention will over power the good memories of us being home for eight months.

• Tricks. Grief plays so many tricks on you. There are moments that I walk past Conley's room expecting to see him in his crib even though I know he is not there. Still, I walk into the room and look in his crib. It's empty. I know it is. But for a split second, I think he is there, waiting for me to say "up" so he could smile so big. I expect to have our nurse, Kyle, walk through the door in the morning so Choice could run up to hug him. For a split second, I think about leaving the door unlocked for our night nurse.

• Awkward conversations. These happen a lot. Sometimes I avoid people intentionally do I do not have these conversations. All those sweet, caring people who ask how Conley is doing because they know his story. Like my hair stylist, the new neighbor, our pharmacist, grocery store bagger, etc. They all know me. They know Conley and our story. And then they ask how he is doing. Talk about a change in vibe in the conversation. Or running into people who already know the end of the story, and they give you the look of "I'm sorry" and even sometimes pity. The elephant in the room. And I say, I'm okay. We are okay. Or the people that say, "Oh, you're Conley's mom?" They have heard about him, about us, but have never met me. And the question, "how many kids do you have?" Well, that depends who is asking. Did they know about Conley, or is this the neighbor across the street that have only seen one child around our house?

• Triggers. Oh yes. Constant triggers. Songs. Specific words. Calls from insurance companies or doctors who want to talk about Conley. Mail for Conley. He always got tons of mail. Those triggers are manageable and expected. But others; unknown triggers are awful. For example,  the other morning on our way to breakfast, Jonathan, Choice and I were rear ended pretty hard. My first thought - laughed out loud and thought par for the course. This has been our life. We have been passive receivers of shit like this for awhile now. Given news and circumstances that had to be dealt with; not questioned or changed. Just accepted and handled. We became pretty good at adjusting and rolling with the punches. Just like getting rear ended. Second thought - tears and hugging Choice. And then feeling bad for the guy who hit us. If he only knew what we had been through.

• Rebellion. There were always so many rules for and with Conley. Like washing hands constantly and using paper towels. Only paper towels. No bath towels because that brought bacteria. And bacteria meant infection. I find myself purposefully using a hand towel because I can. Oh, and I went grocery shopping at 6pm on a Monday night. Unheard of. And taking Melatonin or drinking wine. Amazing. I haven't been able to take sleep medication or drink multiple glasses of wine for a long time because I needed to be on call, and alert if something happened. Or if I needed to drive somewhere.

• People get real. True colors come out in time of loss and grief. Let's face it. These types of situations are hard for everyone. What do you say? Do you say anything? What if you say something wrong? I remember being that person and hearing of a friend's child that passed. It is a tough situation and words can be scary. Anything is better than nothing. But, sometimes I think people forget it was my child that died. My child. My every minute of my every day. My life is starting over. So, I get some leeway and I get a break on things that may have been said or done. And if that is not okay with you, I don't need you. My therapist told me that I can make a protective barrier around myself, and encouraged me to not let things or people in that may burden that protective barrier. That is hard for me because it leads back to #1 on this list: guilt. But, I am working on that. On the other hand, wow. So many people have done more for me, and more for my family, than I ever could have imagined. Selfishness and selflessness are truly seen in these times. They always say people you think would be there, are not; and those you least expect, are the ones who save you. 

• And lastly, love. So much love. I've hung out, met up with and talked to more friends and family these past two weeks than I have in the past two years. I've had deeper conversations about things not related to Conley's care. I've learned new things about good friends that I missed out on. Love for Jonathan and for Choice. Choice loved Conley so much. He knows something is going on. He talks about Conley's tree and kisses pictures of Conley. Picks up Conley's rabbit and hands it to me because he knows I snuggle with it at night. He sits in Conley's room sometimes for no reason. And he loves watching videos of him. He is aware that we have had way more visitors in the past month then in his whole life. And then there is Jonathan. He gets me right now. And he supports my grief, or whatever it is that I'm feeling. Sometimes I just lay in bed under the covers for hours trying to hide from reality. Sometimes, he lays with me. But sometimes, he does not have this option. He keeps working for our family and supporting whatever decisions I make. He is letting me be me, and letting me figure this out. Choice, Jonathan and I have been sleeping in our bed together for weeks now. Never what I would want or even imagined that, especially with all the sleep training we did. I keep thinking how we need to "get back on routine" and start a new schedule, but then I wake up and see those two next to me (often times Jonathan is snoring and Choice has his feet in Jonathan's face), and I feel happy. This huge house and we all stay in one room together. And that's okay for now. 

On a side note, I will be transitioning this blog to a new name to move away from Conley's story, and into a new story about myself and our journey through this process. I would love to hear some ideas of what to call it!! :)

And then it happened...

It's been 10 days. Only 10 days. I cannot believe how much has happened in the past 10 days. It has been comforting having family in town and friends stopping by. And of course, it has been a distraction. A great distraction to say the least.

My great friend, Christina, got the call that a kidney was ready for her son, Jonah. Jonah has been waiting for this kidney for a long time, and has been through so much to make it to this point. More surgeries than Conley. And just as much heartache. Jonah and his family have been through way more than the average kidney family. Every turn was met with obstacles. But, they got the call within 48 hours of Conley's passing. It seems as though Conley got right to work up there!

The paper our fetal specialist wrote about the amnioinfusions we had during our pregnancy with Conley was released. All this happened in the same weekend.

And then Choice was sent home from school with a fever. I spent most of the week catering to him and lugging him around with me to do different tasks. He of course enjoyed every minute of it!

We planted Conley's beautiful Texas Redbud tree in our front yard and spread some of his ashes under the roots. Yes, we had Conley cremated because I couldn't bare the thought of having him laying on his back in the ground for the rest of his life. He laid on his back in a hospital bed for too many days of his life. Now, he will always be with us. In our home, and right outside. If I want to be with him.

I opted to get back into the Bikram Yoga (what was I thinking?!).

I spent one day in the San Antonio Transplant Hospital visiting Jonah and family as he is recovering from his kidney transplant, and then met Jonathan and Choice at the zoo. Choice had never been to the zoo before.

It was a busy 10 days. So far, I've been okay. Okay is the word I've been using when people ask how I am because there is no word to really describe how I am feeling. And honestly, it depends when you ask. I knew at some point all of this would hit me, but I wasn't sure when. And then it happened...

Today I decided to get back into Crossfit. There were many things I gave up so I could solely focus on Conley's care and provide him everything he needed. In the beginning, I tried to do it all. To work, to exercise, to plan ahead...but it was just too much to juggle. I was too exhausted to do my one job which was taking care of Conley. I think the hardest thing for me to give up and truly accept was my health and fitness. There was no time to work out. And yes, all those people who post about how there are no excuses to not work out and eat healthy have never lived my life the last year. Or the life of any special needs mother. It is nearly impossible to do consistently. There was minimal time to cook, eat healthy or monitor your food intake because you ate when and what you could, since you never knew exactly when you would be able to eat again. You never knew when you would spend the next 8 hours in the emergency room. I spent a good part of the last few months leaning over the hospital bed attempting to comfort Conley or sitting next to Conley's crib, holding his hand. The last thing I thought about was working out and eating healthy because my son was dying.

There were many, many times that I was angry, resentful and mad that I had to give up my fitness and health. I have always worked out and been healthy. I grew up playing every sport possible. That was my coping mechanism. I hate admitting how angry I was about this. I found myself resenting Conley at times, and of course, that is hard to admit because it is so wrong to feel that way. And I feel immense guilt for that. For awhile, I tried working out even when Conley was sick, but ultimately, he was the priority. If I could make it to the gym, I was stoked. If not, oh well. But these past four months that Conley was so sick, the last thing I thought about was going to the gym. Until one Monday, three weeks ago. I had packed a bag to try out a new gym close to the hospital where Conley did dialysis for four hours. I figured I could sneak away for an hour since he had our amazing nurse with him. But, that ended up being the Monday he stopped breathing during dialysis. I could tell he wasn't feeling good, so I decided not to go work out - that's typically how it went down. Bag in car, ready to work out, having it all planned. And then I defaulted to stay with Conley because I could tell something was wrong. I cannot even imagine the guilt I would have felt if I would have left to work out and came back to find out he had stopped breathing.

But, today, I went to Crossfit. Because why not? Choice was back at school and all the family was gone. Friends are back to work and normal life continues for everyone else. So, why not me? I thought now is the time to try my new normal. I knew something was different as I drove closer to the gym and my stomach dropped. My heart felt sad and I didn't really understand why I had tears in my eyes. I sat in the car for 10 minutes to gather myself. It was great getting back into the gym and see all the familiar faces. Everyone was so welcoming and supporting, as always. I loved seeing all the people I've missed. But, I found myself becoming very emotional. All I wanted for the last 20 months (I couldn't work out during my pregnancy since it was so high risk) was to work out consistently and get back on a schedule. To be fit. To have a life. To be health. I wanted it so much that I became angry and depressed at times, and then complacent. So, why wasn't I excited to be there? As a friend of mine said during a recent breakfast date, "I'm thrilled to have access to some of your newly free time and heartbroken about why your time has become free." And that's when it hit me. The reason I could go back to working out without constraints is because Conley is gone. I tried to push these feelings aside and enjoy being in the moment, like Conley would want. I even set myself in the back corner for the strength part of the workout, partly because I was worried I would look like an idiot, and partly because walking into the gym made me emotional. I found myself tearing up between each strength set, leaning up against the wall, feeling so guilty that I had been angry at Conley, at the situation, for so long. I felt like curling up in a ball. I had a surreal feeling that I was in my own world, with people laughing around me and the music blaring, but I was all alone with my thoughts. I should have just enjoyed him more and not always desired to be somewhere else. And now that I was somewhere else, I wanted nothing more than to run home and be with Conley. But he wasn't going to be there when I got home. The last time I drove home from Crossfit, I was going to see Conley. And just like that, everything triggered feelings of sadness. I saw Bluebonnets on the drive home and thought how I never took a picture of Conley in the Bluebonnets like every other family. I passed a plant nursery and remembered how much Conley loved the butterfly healing garden. I just let myself grieve on the way home and took in the sadness, like I had always done. It is part of the process of healing. When I arrived at the house, I went over to Conley's tree and told him I loved him. And then, I felt the urge to blog. So I did. Because I know that all these feelings are normal and real, and I wanted to be able to remember all of these moments, good or bad. Someone, somewhere can relate, and I hope that it can bring comfort to them.

Choice went up and gave Conley kisses all weekend.

Grief is nothing new

October 29, 2014. That is the day we started grieving. This is the day we found out that something was wrong with Conley.

We had big plans for Conley. We had big plans for our family of four. We chose to have the boys close in age so they could be best buds, and do everything together. We wanted to take them to the same school, so Conley could follow in Choice's footsteps by charming all of the teachers. We wanted to have them participate in music class together. We hoped to enroll Conley in swim class. I had hoped to continue working out, doing Crossfit and Prenatal Yoga, just like I did when I pregnant with Choice. We wanted to visit family in California for the first time when Conley was a baby so everyone could meet him and love on him. We looked forward to being able to give the boys baths together so Choice could splash Conley and we could teach him about being gentle. I wanted the boys to wrestle around on the floor, get dirty at the park, and eat ice cream together. I planned to go back to work part time so I could still do the work I love, while also taking care of my boys. Taking care of my boys together. I anticipated being able to take them both places by myself; being able to handle the idea of two children under two all alone as most mothers do. I dreamed about them sharing a room as they got older and cuddling, maybe even having bunk beds, or a trundle bed. I wanted to pass Choice's clothes down to Conley. This is just a small list. There are so many more things I had hoped, wished, wanted, dreamed, and anticipated. Planned even. All those things you envision when having two children; a partner in crime or a best friend. But, none of this could happen.

Conley could not go to school, music, gymnastics, swim class, or participate in any group setting regularly because he was immunocompromised. He couldn't take a bath with Choice because he could not get wet in certain places due to his medical devices that may lead to infection. We could not travel to California because Conley had to be hooked up to dialysis every night, and packing all the supplies needed for just one week, or one night, was too much to even fathom. They could not wrestle or rough house because Conley was so fragile and prone to vomiting with minimal stimulation. Conley was not able to play in the dirt at the park due to risk of infection. Conley did not eat anything by mouth because kidney failure made him too nauseous all the time, so ice cream was out. Taking Choice and Conley alone anywhere was difficult, and sometimes impossible, given Conley's vomiting and constant one on one attention. Conley could not wear Choice's clothes because he could not tolerate shorts or pants due to the medical devices in his belly and his proneness to vomiting. He couldn't wear Choice's old shirts because medical devices on his chest would not be secured. Every doctor always wanted to see Conley's tummy, so even onesies were difficult to tolerate, so rompers it was all the time. Again, the list goes on.

The one thing that did go as planned was that the boys were best buds. Best friends from the first minute. While they did not, and could not, do a lot of things together, they loved each other so much. Their eyes lit up when they saw each other. Choice came home from school everyday and asked for Conley. Conley always reached and tried to play with Choice's hair. They were in fact best buds.

So while we were still happy that Conley was alive and with us, we were also grieving. So you see, to me; to us, grief is nothing new. We grieved most of Conley's life because the constant fear and anxiety that Conley could die at any moment was there. We grieved the life we had wanted for Conley. The life we wanted for Conley and Choice together. The fact the we were the ones in control of his every day care brought grief. I had to grieve the Chardonnay that I knew, and quickly adjust to the new role I had acquired without any room for major error. I lost myself; I lost who I was as a mother and as a wife. I was grieving that too. Every time Conley was sick and had to go to the ER, or be admitted to the hospital, or have a planned or emergency surgery, I was grieving. Seeing things that no mother should ever have to see created an unimaginable amount of grief. Tubes, wires, blood transfusions, multiple IV's, scars, open stomachs...just stuff in and out of my child's body every day of his life. I saw Conley suffer too many times, and I just sat there with him, grieving, every minute, because that's all I could do. That's what mothers do. So, I've become pretty good at grieving.

These past few weeks have been really strange to me. I constantly find myself consoling others as they grieve Conley's death and celebrate his life. And that's okay. I am truly okay with this. Because I've had his whole life to grieve. And that's when it clicked. To others who are on the outside looking in, the majority of the grief started after Conley passed. But, that's when ours mostly ended. Don't get me wrong, I am still grieving, but this grief feels different. Jonathan and I have talked many times about how we feel that others might look at us and wonder how we are not constantly in tears or how we are able to be so "strong" right now. How are we laughing and going out to dinner, and meeting up with friends? For example, today I picked Choice up from school and met with a friend for a play date at the park. Never would that have happened before. It was always 'get Choice from school and get home as fast as you could so we could take care of Conley.' I felt guilty that I was looking forward to this park date and having the freedom to enjoy the afternoon with Choice, while I should be grieving the loss of Conley. It's a constant struggle to my heart and mind, but thank God for Choice and his ability to distract me from any sadness. He has saved us. And I know Conley would not want me to feel guilty. He knew we did everything for him and about him. We all sacrificed for him, and given the chance, we would do it again. And as Jonathan and I talk about how we wonder what people think of our grieving process, once again, we are on the same page; and we just get each other. Especially in this moment. Jonathan and I as parents grieved for Conley's entire life. For what we lost, what we could not have, what we saw, we what had to do, the decisions we made, and for what we thought would be. And we grieved quite a bit behind the scenes; behind closed doors. And only when we started to share Conley's story through the blog, that is when the community started grieving with us. This is how my healing began. My healing began when I started the blog and allowed everyone to grieve with me.

"Our culture treats grief like a problem to be solved or an illness to be healed. We've done everything we can to avoid, ignore, or transform grief. So that now, when you're faced with tragedy, you usually find that you're no longer surrounded by people — you're surrounded by platitudes. The last thing a person devastated by grief needs is advice. Their world has been shattered. Inviting someone — anyone — into their world is an act of great risk. To try to fix, rationalize, or wash away their pain only deepens their terror. Instead, the most powerful thing you can do is acknowledge. To literally say the words: I acknowledge your pain. I'm here with you. Note that I said with you, not for you. For implies that you're going to do something. That's not for you to enact. But to stand with your loved one, to suffer with them, to do everything but something is incredibly powerful. There is no greater act for others than acknowledgment. And that requires no training, no special skills — just the willingness to be present and to stay present, as long as is necessary. Be there. Only be there. Don't leave when you feel uncomfortable or when you feel like you're not doing anything. In fact, it's when you feel uncomfortable and like you're not doing anything that you must stay. Because it's in those places — in the shadows of horror we rarely allow ourselves to enter — where the beginnings of healing are found. This healing is found when we have others who are willing to enter that space alongside us. Every grieving person on earth needs these people.  I beg you, be one of these people. You are more needed than you will ever know. And when you find yourself in need of those people, find them. I guarantee they are there." - Tim Lawrence  (http://www.upworthy.com/8-simple-words-to-say-when-when-someone-you-love-is-grieving?c=ufb6)

My heart keeps telling me that I should be grieving more now that Conley is gone, but I'm not. At least not yet. And I'm not naive enough to think grief is linear. I know it comes and goes. My heart and soul are not happy by any means, and I feel lost without Conley here, but I am not grieving any more than I have since October 2014. At least not how I was when Conley was alive. I keep telling people that Conley is okay. Because I know he is. When he was here on this earth, I could not tell people that he was okay. Because every day would change. I would have to say he is okay today; this minute; but we do not know about tomorrow. But now, I can say that he okay; forever. And I truly feel in my heart that is true. Therefore, I don't have to grieve anymore.

I don't know; and that's okay.

Conley has been my life, my everything, my 24/7 for some time now. Even when I wasn't directly taking care of him, I was doing something for him. I was making calls, talking to doctors, organizing his medications, agonizing over each detail or updating his schedule. And now that's over.

I've had many people ask me several different ways, "What's next?" As in, will you go back to work? Will you still work with kids? Are you going to Crossfit again? Maybe you should work with parents like you and use your degree to counsel them? What will you tell Choice? I have also had many propositions for volunteer roles, or maybe write a book, and speak at events. In the midst of these conversations, I found myself stuttering, and feeling indecisive. And then I think to myself, wow, that's a good question. I have so many OPTIONS and CONTROL over what will happen next and I have no idea what to do with it. It makes me feel overwhelmed and anxious, and unsure. Scared. Then I think how ironic that is. I had NO CONTROL and NO OPTIONS for so long that I had really found myself surrendering to the flow of life. Just taking what came. I stopped planning or expecting. I just woke up every morning and thought, "okay, what's happening today and how will I feel about that." What battle will we face today? To say each day was different would be an understatement. Every hour was different. And to someone like me who was always wanted expectation and plans, to be set on a schedule, with little flexibility and minimal capacity of major change, that was by no means easy. It took me so long to transition to role of spontaneity and unknown. So long, and lots of therapy.  Soul searching. I hated not knowing what to expect, and not being able to be proactive. I was always someone who was prepared, understood early and got ahead of each obstacle. That is how I minimized anxiety and became a perfectionist. I was always on top of everything. I couldn't be anxious if I was overly prepared; if I knew what to expect. But, Conley changed all that. 

In the beginning, I was scared, angry, resentful, traumatized and living on edge. I had to accept that some things had no connection, no reason and no answer. Most of his life could not be fixed, and I was a fixer. I wanted to know why everything happened, so I could prevent it. Especially all the bad things, and the pain, and discomfort. All the vomiting. That was the hardest part. If I could find the reason why he was uncomfortable, I could fix it. But, really, I couldn't. I finally realized that. So, I had to accept that, and learn that I could not fix some things. I had to be okay with that and still be there even though I could not do anything. Just in the moment with him, so he knew that I was trying. Many times I felt like I had failed him. True mommy struggle. I could not help him. What a horrible feeling.

And at some point, it just happened. I adjusted. I became "okay" with late night ER visits, back to back doctors appointments, quitting work, not being fit, and having to be reactive. I still did not like it at all, but I became good at it. Not just good, but amazing. I owned it. I was good at being reactive. It didn't stress me out as much as it used to, or send me into a panic attack like in the beginning. Shit happened, and then I went with him and reacted. I was decisive and direct. No stuttering. I knew every last detail. I mean, if this was my job, and my world, I was going to master it. I turned my biggest fear into my biggest triumph. I knew everything about Conley. EVERYTHING! Every sign, symptom, medication name and dosing (he had about 12 prescribed), specialist name, ER visit, hospitalization time, number of surgeries, vital signs...The list could go on. I learned to make decisions fast, and without hesitation because on certain occasions, time was not on our side. At least three occasions would have ended this blog sooner had I not reacted as I did. 

But now, I stand in the midst of these conversations, and there is no answer. I don't even know what to say. Because any answer I chose is right. There's no wrong answer this time. Only what feels right to me. And to be completely honest, I have no idea. At any point during our journey, I would have said I wanted life to go back to how it was, with me working with children and exercising every day. Taking Choice to music class and gymnastics, having play dates and cooking or baking every weekend. Planning trips to visit family and cuddling next to my boys when they have a simple cold. Learning I was pregnant again and giving Choice a sibling that would be so close in age. Before all of this happened. 

But now that I have options, I feel very unsure. I have the chance to press the reset button and I don't even know where to begin. So, I decided to begin by acknowledging that I don't know. I don't know what I'm going to do, or how I'm going to feel; what path to take or what will make me happy. I just don't know. This journey has taught me that I cannot predict how I will feel during each step. Never would I predict I would have felt more love and joy than pain and grief during Conley final days in my arms. Never would I predict that I would want to hold him as he took his final breath. Never would I predict that I would want to share every last detail of his life with strangers. And then I think, how cool is that? I get to live today and learn something new about myself each day instead of trying to fit into this fixed presentation of what I thought I should be. Or what I was. Not many people get that chance.

I don't know what I'm going to do, or how I'm going to feel; what path to take or what will make me happy. So, I will do what I've done so well for so long now, something that Conley has effortlessly taught me. And I am so grateful for. I will do what I feel today. I will wake up each morning and see what today brings. I will live in the moment instead of trying to decide what to do weeks or months from now. If I want to do something, great. If not, who cares. I have time. Because although we always have plans and dreams, nothing is guaranteed but this moment right now. So let's just embrace it.