Tag Archives: Scared

Smoke and Mirrors

smoke

When your child dies, you don’t lose them all at once. You lose them by increments, microscopic particles, little by little, bit by bit, second by second, hour by hour, day by day, month by month, year by year. The immediate absence of their physical body is shocking; traumatic. I imagine this is the same whether your child suffers an illness or is ripped from your arms in sudden tragedy. Even if you know it’s coming, nothing can prepare you for that moment when their breath stops, their heart quiets, and a silence fills your Soul never to have sound again.

This is what I’ve been going through and why I’ve been on hiatus from this blog. It’s been too much to carry – to heavy for words. I survived Mother’s Day. I survived a birthday. We survived Father’s Day. We managed to make it through Nolan’s one-year anniversary. The days continue to be wrapped in darkness. The panic attacks are back in full swing. The nights are filled with terrors only to awaken to find that is has become my life.

I’m losing Nolan in pieces. Sometimes it feels like he’s just not home, and I have to remind myself that he’s not coming home. I look for him everywhere, in everything. In every tree, in every leaf, in every whisper of the wind. I try to see him in every cloud and bird. I search each rock and flower and blade of grass to find something – something – that calls out to me from him. I was laying at the lake last week, just watching the clouds and talking to him in my mind. I could swear the clouds spelled “LIVE,” and I started to cry. The eagle chose that moment to soar over the lake, and I almost believed it was real. Part of me knows that he is still trying to reach me, but the bigger part is so wrapped in pain that it makes those signs easy to rationalize away.

Pieces of him drift away. Slowly, quietly. The emptiness is becoming familiar, routine. I still cry every day. Every. Single. Day. Endlessly. I see all the posts about Grief online and they don’t help. Grief is the price of love and all that nonsense. I call bullsh*t on that. Love has no price, especially the unconditional love for a child. Grief is what rises up and engulfs the energy that you used to spend on that child. All those thoughts about them, the physical energy in taking care of them, the emotional devotion directed towards them, your hopes and dreams for them – it all just hangs there like a specter hovering in your heart. It becomes Grief incarnate. It takes over every aspect of your life.

I am beginning to see the understatement that “New Normal” really means. It’s that Grief encompassing every part of you – mind, body, and Soul. It pushes out all color from your life. You actually become used to it. The constant battle of railing against the pain and trying to find the sun – and your Son – begins to feel familiar. Your shoulders slump under the weight of agony, your back curves, everything hurts, but you begin to desensitize yourself to the sensations. The fight is gone. Surrender is the only option.

All this goes on behind the smile and the “I’m ok,” in response to your “How are you?” All this happens behind the laughter of a joke you told or a memory you shared. Smoke and mirrors. People become more comfortable with that perception. They want you to be ok. They want you to be happy. They want you to laugh, and so you do. Only those who look beyond that surface, only those brave Souls who travel the same path really notice the laughter never reaches your eyes. They notice you always deflect questions about yourself. They know it’s self-defense. Self-preservation. Even with all my devotion to being brutally honest about this Journey, I have somehow become a Master of Smoke & Mirrors.

New Normal

rage-nuclear-l“Mom…Mom…MOM…are you OK?!?! MOM…can you breathe?!?! MOM!! BREATHE!!!”

That’s what I woke up to in the middle of the night. A scared, traumatized little boy afraid his Mom was going to die in the bed next to him.

“I’m ok, baby. I was just dreaming.” That was all I could think to say. I was dreaming, right? This is all just nightmare, right? Li’l N’s arms wrapped around me so tightly, and it took some time for him to fall back to sleep. I laid there holding him, watching him sleep, and crying for Nolan for the next 4 hours until the alarm went off. Then I got up and went to work like I was fine, like I was normal.

Well, I’m not normal. I hate the “new normal” that people say you need to find. I want my old normal back. I want my old self back. I WANT MY SON BACK. I can’t have that, though, can I? What I can have is this “New Normal.” What does that look like? Well it looks like shit. It looks like I cry an ocean every freaking day. It looks like I have panic attacks in my sleep. In my SLEEP! I CRY in my SLEEP! New Normal? My youngest son can’t sleep alone because he’s afraid of what’s going to happen to me if he’s not there to wake me up when I stop breathing IN MY SLEEP. He can’t sleep soundly because he’s afraid of waking up next to his dead mother.  Excuse my language, but FUCK YOU NEW NORMAL.

I didn’t ask for this. I didn’t want this. I can’t handle this. I know I’m supposed to be graceful and supportive and looking for spiritual answers. I’m supposed to be finding a reason to live. I’m supposed to be looking for acceptance and absorbing the New Normal. Well, I can’t. Just when I think I’m gaining ground and making progress, Grief grabs me by the throat and rips my heart out. What the hell is progress anyway? No matter how far ahead I move into the future, my son is still DEAD. I repeat, FUCK YOU NEW NORMAL.

<end rant>

Nolan’s Hands

hands

Recently, I went to pick up Nolan after he spent the night at a friend’s house. I remember pulling into the driveway of this house I had never been to before and being so desperately excited to see him. I could not wait for him to come out of the front door. I missed him with a ridiculous intensity that made no sense. He’d only been gone one night, for Heaven’s sake! When he finally came outside, I nearly shrieked. Ok, maybe I did a little bit. He walked casually to the car with that lovable smirk on his face. He was wearing his favorite plaid shirt with the sleeves rolled partway, and a pair of jeans. I remember looking at him and thinking what a stunningly handsome man he was growing into. He got to the passenger side of the car and slid in next to me. He looked at me and grinned. I said to him, “Nolan, I missed you! I had the most horrible nightmare that you died!” I held his hand up to my cheek and kissed it. I remember the feel of his warm hand against my face. When I looked at his hand in mine, I got confused for a minute. He didn’t say anything to me, just smiled a soft little smile, like he knew that I was going to fall but he couldn’t help me. He couldn’t save me from it, but he was loving me through it.  All of a sudden it came back to me. THIS was the dream. My life was the nightmare. I woke up in a sea of tears that I still can’t seem to stop.

I’ve always loved Nolan’s hands. From the moment he was born, I’ve had this bizarre fascination with them. The way he would hold onto just my one finger when he was an infant, the way he studied them himself as a baby, the way he learned to use them as a toddler all left me in awe. When he started building things and drawing, I would sit for hours with him and watch his hands. I always thought they were the most beautiful hands I had ever seen. As he got older and they started to become the hands of a man, I would still look at them and think about them holding his own child someday. I would think about those hands touching the face of his wife someday. No matter how old he got, Nolan would always let me hold his hands.

When I first was able to hold Nolan’s hand in the local hospital That Night, I knew he was gone, but in my deep shock, I thought there was a chance he’d wake up. I kept telling myself that when he was life-flighted to the next hospital, we would get there and find him awake in bed. There was no other vision I let take hold. When we got there and I held his hand again, I knew. I was still insistent that the doctors made a huge mistake and he would be fine. I remember thinking the neurologist couldn’t be taken seriously. I mean, he had a Minion shirt on! How could I believe this man when he said my son was not going to recover, that he had already passed away, while he was wearing a shirt with a MINION on it?? It had to be a horrible joke. His heart was still beating. How could he have already died?

It wasn’t until Nolan was settled into his room in the ICU and I crawled into bed with him that it hit me. When I had to physically lift his head to put my arm under it, and I had to physically manipulate his fingers to lace into mine, the reality broke through the cloud that he was, in fact, already deceased. As people came in to say goodbye, I talked to them as if Nolan wasn’t already….well….deceased. I didn’t want the kids to think of that while they said their good-byes. His heart was beating steadily, his body was warm. I know he was in the room, but he was not in his body or in that bed with me.

I spent the next two days staring at his hands. I saw the signs of death slowly taking over his body. A grayish substance began leaking from his nose and mouth. I would lovingly wash it away and apply chapstick to his lips. His coloring began to change. The scent of his body began to have a subtle tinge to it that I will always smell in my mind. His hands began to get smaller, thinner. I couldn’t lie to myself when I was witness to these changes all while his head lay on my shoulder and our hands linked together. Our bodies were pressed so closely, our legs entwined as if he had just fallen asleep with me as he had countless times before.

I remember seeing Nolan in his casket and thinking his hands were wrong. They were thin! His fingers were always so strong and his hands slightly wide. They had lost that and his skin clung to his bones in such an alarming way. They were freezing! I held his hands so long, the warmth from mine leached into his and they became warm again. For as long as I live, I will feel those icy cold fingers in mine.

I don’t think I have the words adequate to describe the feeling of waking from what you thought was a nightmare to find the actual nightmare is your life. I’ve been exceptionally fragile since The Dream. I’ve had to go into the bathroom at work to cry a number of times. I have a hard time being around the kids right now.  Controlling my thoughts is exceedingly difficult. Leaving work one afternoon, I had to stop as an ambulance went by. Hearing the sound in the distance getting closer immediately threw me back to That Night and waiting outside, screaming for help, and finally hearing the sounds of the ambulance in the distance. I wasn’t in my car anymore. I was trapped in That Night all over again. I’m not sure how long I sat there after the ambulance went by reliving that horrible night. Eventually, another car came up behind me and beeped. I’ve said it before, PTSD is no joke. You really are back in time while your body simply holds space for you to return.

I went to a fundraiser for the football team knowing that I really wasn’t strong enough to handle it. It was important to DH, so I went with him. It was alright at first. I struggled but was able to make eye contact with people and even have a few short conversations. They played a video recap of the season that I had seen before and was forewarned would be played again. I knew it would be heartbreaking and that I shouldn’t stay to watch it, but knowing I would catch just a couple glimpses of Nolan on the screen made it impossible for me to walk away. Thankfully, as soon as it began, my Warrior Women surrounded me. I cried through it, ruining my makeup that I had carefully applied to mask my suffering. I sat there falling down the rabbit hole while 3 sets of hands literally held me up. It was a powerful moment. After the video ended, I ran from the room. I had a few minutes of breakdown and then I scolded myself to get it together. I think I fooled those Warriors. I went back to the function room and frantically searched my bag for my anxiety pills. I hardly take them but always carry them just in case. Well, except for that night, I carry them. I didn’t have them with me so instead of leaving, I decided to self-medicate. I know enough addicts to be well aware of what a bad choice this is, but in the moment, I needed the pain to end. I’m becoming very skilled at fooling people. To all outward appearances, I was laughing and dancing and acting silly and seemed to be having a good time. I wasn’t. I was dying inside but wasn’t strong enough to get myself the help I really needed. I continue to work on this.

I was successful in self-medicating to the point of complete blackout. I’m not proud of it, but I’m honest about it. I’m human and I am trying to figure out how to stay alive in a world without Nolan. Luckily enough for me, I have no recollection of the latter part of the evening. I know many teenagers are reading this, and I’ve hedged about sharing this part of my struggle, but I’ve sworn to myself to be brutally honest. Kids, this is a bad idea. It ends up being harder in the long run. You can’t escape the pain this way. In fact, it makes it a thousand times worse.

The floodgates are open and I can’t seem to close them. I’m still extremely fragile. I’m walking on very thin ice that could swallow me whole at any moment. I’m having a lot of flashbacks during the day. I don’t get much sleep at night. I gave up caffeine a week ago and have no idea why. Seriously. No idea. It might appear that The Dream set off a downward spiral and hurt more than it helped. While the downward spiral part is true, I believe The Dream is helping. It is making me face some areas that I need to really work harder to control. I pray a lot. I am watching myself more closely. I am committed to making choices that will help me become stronger each and every day. I don’t understand about the caffeine, but for some reason, I feel guided to do so. I’m following my intuition. I’m trying so much harder to trust the process. I’m trying to trust that Nolan really is loving me through this.

Last night after obedience classes with Ellie, I met the daughter of the breeder who gifted us with Ellie. We talked for a bit about Nolan and how Ellie has been such a blessing to our family. I’m thinking of having her licensed as a therapy dog since she seems to be able to tell when both Lucy (our epileptic rabbit. I know. Only in my family!) is going to have a seizure, and when I am brewing a panic attack. When I left, walking across the dark, muddy parking lot, I found a coin. I know it was from Nolan, acknowledging that he had heard all I said and was loving me through everything. I trust that is true.

While The Dream did send me on a spiral, holding Nolan’s hand again, even for a such a brief moment, is worth any Hell I have to walk through afterwards. He challenged me in life, and he continues to challenge me in death. Being Nolan’s mom is an adventure that never ends.

Sleepwalking

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I haven’t been able to get myself to sit with my thoughts much in the last few weeks. The crud hit my house pretty hard and it put me on a downward spiral that I am still trying to pull myself out of. It started with DH catching the crud. All 3 of us share a bed and were hopeful that the invisible barrier between DH and Li’l N would trap the germs on his side. We used the old invisible cootie spray, you remember that stuff from 3rd grade, right? It didn’t work. About a week after DH went down, I followed. Grief is exhausting on your entire being; body, soul, spirit. Barely having the energy to make it through a day anyways, the crud just toppled me. Then it hit Li’l N.

At 1:45am on a Tuesday morning, Li’l N woke up from lying next to me and said “Mom, I think I’m going to be sick.” I will never, ever forget this moment because it is exactly what Nolan said to me on that awful night. He was lying in bed with me, sat up, and said those exact words. Those were the last words he ever said to me. I immediately woke up in that nightmare. I didn’t see Li’l N next to me. I saw Nolan. It took a minute to clear my head and realize that this was a different child and a different night. I scooted Li’l N out of bed and into the bathroom. The same bathroom I scooted Nolan into. Bad idea. Li’l N went to his knees in front of the toilet, and I stood paralyzed at the door. I looked at him and saw Nolan in the same position. By the time I had cleaned up the mess Nolan had made, he was taking his last breaths. When I saw Li’l N in that room, in that same position, after saying those same words…well, I can’t even describe what went through my body. I was trapped in a double nightmare. PTSD is no joke. The worlds were overlapping. One minute I saw Li’l N, the next it was Nolan all over again. The horror of it was intense.

I was able to ask Li’l N if he could go into another bathroom. He turned and looked at me and asked why. All I could say was, “Because Nolan…” I felt awful. Li’l N was so sick and miserable, but like the amazing young man he is, he got up and silently walked to another bathroom that was smaller with a cold tile floor, which I’m sure was not comfortable for him. He found his place in front of the toilet again and said to me “You can go to bed if you want.” I felt like the worst mother in the world. How horrible it was for me to be wrapped up with his brother while he was so sick! What I should have done was wake DH and get his support. I wasn’t thinking clearly at the time.

Li’l N and I stayed in that bathroom for more than 45 minutes. In that time, his fever spiked and he went into seizures. We had to call the ambulance again and they took forever to come. In the hospital, they were unable to get his fever under control, and a seizure claimed his life. I had to sit looking at another of my babies on life support. I had to say goodbye to another child. I had to pick out another coffin. I had to bury my youngest boy.

Of course, that was all in my head. His stomach eventually calmed down, and I was able to get some medicine into him. His fever was 102.6, which is high, but not seizure territory. I think. The emotions that went through me were real even if the events were imagined. It was torture.

I was never an alarmist parent. Stitches were no big deal. My daughter had a couple of surgeries and I didn’t ever think of losing her. Nolan had surgery when he was 11, and it didn’t excessively worry me. I was pretty level-headed with the kids. Not anymore. I no longer assume that “He’ll be fine.” I don’t know that he will be. I know now that the worst can happen, and I am not naive enough to think that it can’t happen again. How do I learn to balance that with reality? The reality is that most likely he will be fine, whatever the situation. How do you stop those PTSD triggers? How do you stop the worlds from overlapping? These are things I’m trying to figure out.

In the meantime, this event threw me down the rabbit hole again, or still, or worse…I don’t even know. I can’t stop crying. I live that night over and over and over every day. I am carrying on a conversation with someone, but in my head, I am in that night. I don’t remember the conversation I held. It’s a strange feeling. I wish I could describe it better, but it’s kind of like having a Nyquil hangover. You’re groggy and kind of out of it, your body feels heavy and your head is a little dizzy. That’s what I feel like physically all the time, even when I appear to be fine. I’m living a double life. Actually, I’m not living a life at all. I’m just sleepwalking.

Little Triumphs

triumphs

If you’ve been keeping up with my Journey, then you know last Tuesday I went back to work. If you missed that post, go ahead and read it now. I’ll wait….

That was a very challenging day. As I said, I went home, put on my baggiest pair of sweats and went to bed. Wednesday morning, I managed to get up and get Li’l N off to school. I got dressed, kind of. Ok, I put back on my sweats from the day before. Don’t judge. I wandered the house for a few hours. I don’t know if it’s a grief-specific behavior or if it’s just something that happens when you’re lost in your life, but I tend to wander. Literally, I go from room to room and do nothing. I might put in a laundry but then I forget all about it. I might pick up something that needs to be put away and then wonder how it got into my hand. My body is moving but my brain is disconnected. It’s like walking in a fog without your glasses on. You can’t see where you are going, everything is distorted, and you are surprised when you end up some place. I don’t know if I’ve done a good job of articulating the feeling. If you’ve ever experienced it, I think you know what I’m getting at. I gave up and went back to bed. I was numb and lost. I alternated between silent tears and sleep. I pulled myself together enough to pick up Li’l N from school. When we got home, I went directly back to bed. He seems to understand my need to isolate and sink into the despair from time to time. It doesn’t appear to bother him too much, but he does check on me every so often and ask if I need anything. He tries to be quieter than usual when I get like that. He truly is a most compassionate young man, and I am so lucky to have him. He so sweetly whispered in my ear “Mom…I need to go to practice. Do you think you can take me?” So I hauled myself out of bed and brought him to practice. I went home and back to bed. Amazingly enough, I was there to pick him up on time too. Annnnd then I went right back to bed. He and DH managed without me well enough, and eventually they both crawled into bed and we all fell asleep.

I think it’s important for me to allow myself to wallow now and again. I call it a Grief Day. When I just can’t face the world, and I tuck myself in my little cocoon and watch the clock. I wait for the minutes to roll into hours and for the day to just pass. I cry. I sleep. I let my mind go down all those awful paths. I experience That Night hundreds of times on Grief Days. I don’t think this would be a good habit for everyone. It works for me, though. I have to surrender completely to the profound sorrow in my Soul. Eventually I come back out of it, and I’m just a little stronger.

Thursday, I was able to get up and shower and actually put on clean clothes. Yay! Little triumphs! I finished the laundry I had forgotten about the day before. I wandered, but a little less than Wednesday. I went to lunch with a dear friend and was able to be there for her for a change. It was a good feeling. I knew I had to work again on Friday, so I tucked myself and my kiddo in bed a little early and prayed for strength.

Sometimes, your prayers do get answered. I woke up Friday feeling…dare I say it?…Good. I felt rested and strong. I felt like I could face the day. This was the school I was most nervous about entering. Nolan’s presence is still everywhere. Many of his friends are still there. I took a few deep breaths and walked in the door. I was met by another staff member and embraced in the most genuine, heartfelt hug. I saw tears of happiness in her eyes that I was back at school. Each kid I passed threw their arms around me. So many dear friends came in to check on me throughout the day. Li’l N came into my room about 4 times to see how it was going. Nolan’s close friends and his most special girl spent a whole period with me. It was really wonderful. I felt like Me again. I felt like I fit. Mostly. There were moments when I remembered Nolan and his friends getting passes to spend study hall with me. There were moments where I saw his shadow going down the stairs. There were moments I could swear I heard his voice down the hall. There were moments of kids’ “I remember when Nolan….” that made me a little weepy inside. I’m so glad to hear those words, though. I can listen to his stories over and over and over again. Yes, it hurts because it’s all I have left, the memories. But it feels good too, because all I have left are the memories, and knowing that so many others are thinking about those times makes me feel like he won’t be forgotten. Every so often I will hear something about him that I didn’t know, and I feel so blessed to get another glimpse of the man my son was becoming.

The tears came, as they do every day, but it was manageable. I have cried every day Since – many times each day. I’m getting used to it. I’m crying right now. It’s becoming incorporated into the flow of my life. Tears come. Sometimes they come with gut-wrenching sobs that tear the very fabric of my Soul and bring me to my knees. Sometimes they come silently as I continue doing whatever it is I’m in the midst of. I don’t know if a day will come when the tears don’t flow. I imagine that noticing I hadn’t cried all day would cause me to cry anyway. I can’t think too far ahead of how this pain will be absorbed into my Being. I can only do the best I can every day. Most days are tremendously arduous. Other days, however, I have these little triumphs that I need to celebrate. It can be as small as getting out of bed, or it can be as momentous as holding myself together for 7 hours IN A ROW. This road is long and full of potholes and obstacles. There is black ice that wipes me out, and windstorms that blow me off track. The footing on this road is treacherous. I can’t walk it alone. So thank you, to each and every one of you that holds my hand, literally and figuratively, and celebrates these little moments with me.

Time Marches On

time

Last night I had to take an anxiety pill for the first time since Thanksgiving. I thought for sure I would need to medicate myself to deal with Christmas. It was hard, but I was “ok.” Last night it just hit me – again. Nolan died! You’d think this would have sunk in by now, but it still comes out of the blue and takes me out at the knees. He died! How is that possible??? When will I wake up from this nightmare? My son died! NOLAN died! How did this happen to HIM? It’s so horrible. Walking into that bathroom day after day and night after night, where he took his last breath, is a mighty slap in the face every time. Sometimes I absorb the blow better than others. Last night it knocked me out.

This morning I woke up with a migraine – the kind of migraine that makes you nauseous, dizzy, achy. The kind of migraine that makes the light hurt and your skin supersensitive. Usually my first step is coffee and motrin. This morning I couldn’t force myself out of bed. I lay there waiting for DH and Li’l N to get up. Thankfully they did, and the quiet solitude allowed my mind to just drift. I didn’t want to take the pain away. I lay there waiting, praying, for that loud “pop” in my head that I’ve read about. I prayed for the pain Nolan described in his last precious minutes on this earth. I prayed for the dimming of the world around me. I begged for my heart to just stop beating. I cried out for that little tiny bubble on my artery to let go. Let that blood flood into my brain and blot out everything. Just let it happen. I told myself I wouldn’t call out for help. I wouldn’t try to hold on. I imagined DH coming to find me, thinking I was still sleeping. I imagined my life insurance solving our financial troubles. I called to Nolan to come and take me with him. Please, Nolan…just take me with you… But it didn’t happen. He didn’t come. That stupid little anneurysm stayed intact. I’m held here against my wishes.

My desk calendar still shows July. I haven’t been able to tear that page off. I don’t think I will. I’m packag1231141425-1(1)ing it up with the shrine from the dining room table. I began that process yesterday. You remember, the lovingly dubbed “Extracting Head from Ass” project. It’s actually a lot harder than I thought it would be. That’s probably what started my downward spiral. Each time I put something into the bin, I had to leave to break down. After putting 3 things away, I called it enough for one day. Anyway, this calendar will go into that bin. Eventually.  I can’t let it go. How ridiculous is that? It’s been written all over, doodled on, scribbled on, and yet I can’t throw it away.

Tonight we all change our calendars over. A new year begins tomorrow. A year for fresh starts, new beginnings, a blank page. You know what? I don’t want a new year. I don’t want to live in a year that Nolan doesn’t get to see. The thought of his passing being “last year” devastates me. I didn’t expect this. I won’t exist in the same year as him ever again. His life will be in “years past.” Forever. I don’t want to see the new year. I don’t want to live in a different year from him. But I don’t have a choice. I’ve surrendered already. I’m trying to relax into the abyss and trust the process. I don’t want to. I really don’t want to.

My plan for tonight was to stay home, under the covers, and pretend it’s not happening. We all know Denial is a dear friend of mine. Li’l N, however, has asked that we attend a party. He doesn’t ask that of us often. I’m going to struggle no matter where I am. If I force him to stay home and struggle with me, is that fair to him? If I send him off with DH and stay home alone, is that fair to him? He needs to see me being strong. He knows I hide in the bathroom and cry every night. He always asks to come in, and if I tell him “not right now,” he sits right outside the door and waits for me. He will greet me with a hug and a quiet “Are you ok? Do you need a pill?” He needs to see me being strong. So tonight, I will *probably* go to the party with him. If you see me there, forgive the distance in my eyes. While you rejoice the new year, please forgive my tears. I know I won’t be able to stop them. It’s just part of the journey.

I’ll share these words written in 1990. They are as true today as they were then. Strange how things come full circle.

The leaves fall as the days pass
And the sand falls through the hour glass
The sun shines, no clouds are near
But in my heart I drop a tear
I stand alone every night and day
And deep inside I feel betrayed
All love is lost, my Soul is sad
I dream of happiness I once had
When life was beautiful and everything looked bright
And I was never left feeling alone at night
Now the rain comes and my heart is cold
And forevermore I must stand alone.

Courting Death

silentI woke up at 1:15am with the words of a poem I wrote back in 1990 on my mind. I haven’t thought of that series of poetry in so many years. Grief is strange. It brings up such seemingly random thoughts. Immediately, my mind started writing. I really do need to get myself out of bed when that happens and just let the words pour forth. Maybe then I’d get back to sleep. Anyway, it seemed such a random thing to bubble to the surface. I’ll share those words with you now. Please keep in mind that I was a mere 16 years old.

Isolated and alone
In a crowd of friends
My smile is forced
I don’t want to pretend.
There’s nowhere to turn
No one seems to care
Just turn around
And you’ll see me there.
All by myself
Always alone
As my heart of warmth
Turns slowly to stone.

I’ve read through that series of poems for the first time in many years. The theme is so much the same of what I am feeling now; the isolation and loneliness. As I reflect back, this is something I’ve battled my whole life. I grew up in a very abusive and dysfunctional home. I learned quickly to keep my silence, to not ask for help, to hide my feelings. I tried to commit suicide for the first time when I was 10. Luckily enough, I wasn’t too smart about it. The rod I tried to hang myself from fell down. I never told anyone. I planned about a thousand other ways to do it, but I never had the guts to go through with it.

When I was in 6th grade, a wonderful teacher (and by wonderful I mean a horribly crotchety woman who should never have been allowed around children) told me that I was “not deserving to be a Group 1 student.” This was back in the days when kids were grouped only by skill level. To me, that confirmed everything that I had been told every day of my entire life. “You’re stupid.” “You’re ugly.” “You’re worthless.” “I hate you.” “You ruined my life.” “I wish you were never born.” Yada yada yada. What did I do that caused her to deem me Undeserving? I refused to stand up in front of the class and give an oral report for a science project. I did the project. I did the research and the work and wrote the paper. I simply would not, could not, stand in front of a room full of people and talk. I had spent 11 years silencing my voice. I was told every time I spoke that I was stupid, ignorant, an idiot, etc. How could I possibly stand up in front of the class and show everyone just how dumb I am? I took the F, and I stopped caring about school.

By the time I became a teenager, I had given up on suicidal thoughts. I wasn’t even brave enough to do that. I didn’t, however, give up on courting Death. I courted Death like a hungry beast starving. I teased it. I begged it. I tempted it. I asked for it. At 14 I met another wonderful teacher (and by wonderful I mean a horribly crotchety man who should never have been allowed around children) who kicked me out of class for being unable to answer a question on history. This was the very day I returned to school after almost a 2-month absence with Mono, being in and out of the hospital repeatedly. Nice guy. He kicked me out of the classroom and sent me to the library to do a report on whatever the foolish question was. I wrote his report. Triple spaced, one very long run-on sentence, ending with “A$$hole.” I gave up entirely on school that very day. Again, he confirmed what I had been told millions of times.

I chased Death with a passion after that. There really wasn’t anyone there to help me. Nobody to notice. Nobody to reach out. I honestly welcomed Death should He finally answer my call. I did whatever I wanted to. To outsiders, I looked like just another stereotypical teen going down the wrong path. To my friends, I was the life of the party. I was the girl that would do anything without apology or regret. In truth, I was a broken child. In truth, I just wanted to die.

I’m not sure why all of this came up at 1:15 in the morning. Something about the synchronicity of the feelings I have today maybe. I’m no stranger to isolation and loneliness. They are like long lost companions come home again. Or more like long lost relatives I don’t really want to visit coming again. I know what they look like. I know how they feel. I don’t really want their company. I find my mind falling back into patterns of days gone by.

I’d be lying if I said I hadn’t thought about suicide Since. I’ve thought it through carefully. I still couldn’t do it. I wouldn’t do that to my children. That’s not say I wouldn’t welcome Death with open arms should He finally decide to claim me. I would. I would go willingly, happily, completely without hesitation. I probably shouldn’t say that out loud, but this is me. Unfiltered. This is real. I did warn you this was an ugly journey.

I’m both a broken child and a broken woman. It’s my belief that these pervasive themes that encompass you throughout your life are purposely part of your path. It’s something I have to learn to overcome. There was a time I thought I had. Now I know I learned to think, act, and feel differently, but I never actually overcame any of it. I’ve made my peace with the actions I suffered in the past. I’ve given forgiveness to those who hurt me – for me, not for them. I found a strength through those trials that many people never need. I have to somehow find that strength again. I used to say that I’d been through the worst Life could throw at me and came out tougher because of it. Be careful what you say. Life replied with “Oh yeah? How about THIS?”

So, I’m working on it. Every day. Every moment. I’m striving to find that inner strength to carry me through once again. I’m not going to silence my voice even with words nobody wants to hear. Somebody out there feels the same, and maybe my words will open their floodgates too. I know this blog is followed by some teenagers who may be able to relate to my childhood. I thought about this before writing. Should I share this intimately? I decided (obviously) that yes, I should. I’m not the first to court Death as a child. Neither would I be the last. If you are reading this and are having any of the same feelings I did, please reach out. To me, to a truly wonderful teacher (not a horribly crotchety person who should never be around children), to a trusted adult, to ANYONE. Scream it from the rooftops! Never silence your pain.

Shackles

joan-of-arc-aFor those that haven’t read my post “Naked in Front of the Crowd,” go read it! No, it’s fine. Here are the Cliff Notes. A couple of months ago, I was diagnosed  with a small brain aneurysm.  I’ve had mixed feelings about this from the beginning.  At first, I felt so guilty that Nolan most likely got this from me. Somebody pissed in my gene pool and he paid the ultimate price. It’s obviously ridiculous to feel guilty about that. I carry no more responsibility for his developing an aneurysm than I have responsibility for his getting my ears or my mouth. Genetics are bizarre. So, I got over that. Mostly.

Second stage of coping: I was relieved.  How weird is that? To me, this meant that I wouldn’t have to live another 40+ years without Nolan. There was a back door out of this life! There was a quick escape! It was out of my hands and maybe part of the plan! I was ok with that. I know, I know. My other kids need me and yadda yadda yadda. Hey, Grief is messy, ugly, and doesn’t much care about anyone else. It just is.

Every time I’ve had a migraine since this diagnosis, I did get a little nervous. I immediately began formulating a plan of what to do with Li’l N just in case. I kept the phone near me, just in case. Not the actions of someone who was waiting to die. That showed me that I really didn’t want to leave this world just yet as much as I do want to leave this world right now. Does that makes sense? Don’t feel bad. It doesn’t make sense to me either. Grief is full of strange dichotomies. {shrug}

I met with briefly with Li’l N’s neurosurgeon who was kind enough to take a quick look at my scans. He agreed with the first diagnosis. Considering he’s a pediatric guy, it was suggested I see another neurologist who works with adults. That brings us up to today.

I met with a neurosurgeon who is at the very top of his field. What did he have to say? He was “underwhelmed” with my scans. Wait, what? In this case, he assured me, that is a good thing. While he can see where the original diagnosis came from, he is pretty confident that it’s nothing big enough to require treatment or anything more than repeat scans as the years go by. Great news! Everyone is so happy and relieved. Awesome! Woo Hoo! Right?

Not me. I felt like I had 100lb weights strapped to my feet. I felt like I had a 1,000lb weight sitting on my chest. Relief isn’t the word for what I felt.  I felt stuck. Trapped. Hopeless. Shackled to this life that I no longer want. That was my back door. Now it’s locked. That was my “easy out.” That was my escape. Now what?

It’s taboo to say things like that. We’re not supposed to want to die. When you lose a child, you’re supposed to hold on for your other kids. It’s what everyone tells you. Somehow it’s just expected that you would want to. Let me tell you, that’s not the case. It’s not about how much you love your other children. Lord knows, I love them more than anything else in this world! I’m only breathing today because of them. It’s not about that. It’s not even about love. It’s about loss. Grief is selfish. It blankets everything else completely. Grief doesn’t care that the other kids are hurting too. It can see that, but it can’t touch it. Grief doesn’t care that the other parent is broken too. Grief has eyes and a mind for only one person. The child that isn’t here. Grief cries out for them with a screeching holler that leaves no room for the sound of other children crying. It’s horrible to the other children who will forever be The Other Children.

You may think this makes me a bad mother. Maybe it does. I don’t know. I can’t make any apologies for these feelings. I didn’t ask for them. They came when Nolan left. Experience has shown me that feelings are transient. Hopefully these feelings will be as well. I think they will pass in time because of the deep love I have for The Other Children. In the meantime, I go through the motions. I try to check in with them. I hug them. I tell them I love them and how proud I am of them. I tell them I’m here if they need me. The harsh reality is that I’m not here as I should be or want to be. I’m half out of this world. I’m straddling the abyss. The back door is locked. I have no easy out. I’m stuck. Shackled. Here. While Nolan is There.

 

4 Months

hourglassIt’s been 4 months Since. 122 days, 17 hours, and approximately 37 minutes as of this writing. Since.

Each day moves me a little further away from that moment. I’m trying hard to not let my mind wander back to that time as often. It’s a bitter, uphill battle. I’ve learned to be vigilant with my thoughts. I have a note taped over the kitchen sink that reads “Control your thoughts and keep moving.” I need that reminder. If I don’t constantly stay in control of my thoughts, I’m back there at that moment reliving the next 4 days of torture. Sometimes I’m not strong enough to be vigilant. I’m blindfolded balancing on a tight rope covered in oil over a pool of razors in a bath of salt water. I slip quite often.

Everything has changed. My life is a shadow of the richness it once was. I am but a shell of the person I once was. My playful, free spirit is weighted down. My wings are broken. My spark is drenched. My face has creases that weren’t there Before. I’ve aged at least 5 years Since. There are lines around and bags under my eyes. My skin is dry and thin. It feels like my outsides are beginning to mirror my insides turning me into a dry husk of a human. I barely eat yet keep getting heavier. My body is trying desperately to wrap me in layers to protect my fragile Self. The weight simply pulls me down deeper under the water.

I don’t recognize the woman in the mirror. Her smile is forced and it never reaches her eyes. The sparkle is gone. This woman before me doesn’t laugh as easily or stand as tall. Well, as tall as her slight 5’3″ frame once did. This woman can’t really be me.

This woman before me has no tolerance for petty drama or bullsh*t. She is empty inside but with a well of compassion that knows no bounds. Her thinking is at once clear and confused. She can’t understand why people get so upset about minor things. A car breakdown, a grumpy child, a fight with a spouse. She sees beyond the annoyances to what really matters. She has no filter. She will share her perspective on your struggles with a simple, blunt statement, not meaning to sound crass but simply unable to mince words. She would trade your struggles for hers in a heartbeat.

The people surrounding this woman have changed. She has been abandoned by those she thought to count on in her weakest moments. She has been hurt deeply by those who profess to love her. Yet, she is surrounded by people who are True, Honest, Authentic, Pure. Brave. It takes a brave person to walk in her orbit. It’s a messy, ugly space filled with obstacles and fragmented remains of a shattered life that can destroy you.

This woman before me spends a lot of time on her knees now, in sorrow and in prayer. She knows she is too weak to stand alone. She is somehow strong enough to allow support.

Time is different now. It seems like a second and a lifetime. I still wait for Nolan to come say goodnight at the end of the day. Every night I wait. I still expect to see him getting ready for school in the morning. Every morning. I find myself thinking about where he should be in that moment. Every moment. It’s not true that time heals all wounds. Time passes, that’s all. It passes too quickly and too slowly. I can’t wait to get to the end so we can be together again. I want time to stand still so I can hold Li’l N just the way he is. Nothing makes sense. I will wait for Nolan for every second of every minute of every hour of every day for the rest of my life. I will miss him. I will ache for him. I will Love him.

It’s been 4 months. 122 days, 17 hours, and approximately 37 minutes as of this writing. And yet, all that has passed is the blink of an eye.

 

Shoulda, Woulda, Coulda

carouselI learned today that Nolan’s twitches were, in fact, a symptom of his aneurysm. He had this blinking twitch and this weird moving-his-hairline twitch. That one was pretty strange to see. He could literally move just his hair on his scalp. I’ve never seen anyone be able to do that before. I’d mentioned these behaviors to his Doctor on a number of occasions and was told they were just stress or anxiety responses. Like an idiot, I bought it. Ok, I’ll be kinder to myself. Not an idiot, like an ignorant fool. Try again? Like a passive parent. I can’t help feeling that as his Mother, I should have pursued the issue. I should have known.

Here it comes again. Shoulda, Woulda, Coulda. This is a bad road to go down, but right now it’s the only one I see. I should have seen something more was at play. I should have simply asked for a scan to be sure. I could have been more of an advocate for Nolan’s health. I should have known this deadly condition was lurking. I should have felt the danger! I could have saved him. We could have found out about this in time to maybe do something. I could have saved him if only I’d known. WHY didn’t I know? I’ve given that boy Reiki so many times. How did I not feel something amiss?

Where were my instincts? Where was my intuition? I can tell my kids are lying from the way they hold their bodies. I can tell they’re planning something sketchy by the tone of their voice. I can tell they’re not feeling well by a look in their eyes. How did I miss this? How could Nolan have been so close to death for so long and I didn’t see it? I noticed his twitches increasing in the months leading up to That Night. Why didn’t I pursue it? I believed it was simply stress and/or anxiety. It made sense. Nothing that bad could ever happen to one of my kids.

This is a slippery slope. It’s a carousel that doesn’t stop. People will tell you not to blame yourself, there’s nothing you could have done. People will say it was his Fate or he had something bigger to do. Maybe that’s true. It still spins me around and around and around. If I had just asked for a scan, Nolan might still be here today. He might be playing football this weekend. He might be downstairs right now playing drums. He might be driving me crazy with all of his plans. He might be standing right behind me asking my advice. He might have his hand on my shoulder right now. He might be saying “I love you, Mom” one more time.

I can’t trust myself anymore. I used to consider myself a good Mother. I took pride in being a Steward of these children. I thought I was so tuned in to them on all levels. How did this one get by  me? How could something so major slip my attention? What am I missing now? What if another of my children has something terribly wrong that I don’t see? I have lost faith in my instincts as a Mother, as a Sister, as a Friend, as a Wife. If I missed this, what else am I blind to?

I failed my son. I failed Nolan when he needed me most, and it cost him his life. How do I pick up and keep parenting knowing that? I’m not worthy of these children.