Tag Archives: Medical

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.

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.

 

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.

Naked in front of the crowd

 

stagefrightI thought after the last few days of heavy posts that I would put something a little lighter up today. Maybe share a laugh about Nolan. I do that. I get so far into the dark spaces that I have to let some light shine through. Sometimes I use humor or sarcasm to do that. Sometimes I use beer or wine. Don’t panic, I’m not an alcoholic, but come on. We all do something. Sometimes I use loud music. In this instance, though, I feel like doing so would be running scared. I feel a major breakdown coming on. Saturday will mark 3 months since the World went Dark. My plan was to share the details of Nolan’s passing on that day. I’m not sure if I can. Now I’m wondering if I even want to. We have been so open about everything in regards to Nolan that the last private moments we’ve kept are the graphic details of what actually happened that night. I know I said I promise I would tell you his story, but now I don’t know if I can keep that promise. I think I will just have to wait and see.

I have bared my Soul to you 3 days running now. You have reacted with nothing but compassion, support, and love. I owe you more than running scared. So I will stand before you, naked in front of this crowd, and tell you why I really started this blog.

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Another family who lost someone to a Brain Aneurysm was holding a fundraiser. They were selling sweatshirts that were designed to honor their Hero and raise awareness. My family worked closely with the Kat-Walk and Karo 5K for Maine Brain Aneurysm Awareness in September. https://www.facebook.com/KatWalkKaro5k. We brought them a team of over 130 people and raised over $7500 in funds to go towards their efforts. I bought the sweatshirt from another suffering family to support their efforts to raise awareness. And I felt like a hypocrite.

Here I was talking about what happened to Nolan and what happened to other families. Here I was going around talking about the signs and symptoms of brain aneurysms. I was touting statistics and treatment options…and I was keeping this secret. I’m carrying that same silent killer inside me.

I told my older kids about how I felt like a hypocrite and thought I should just come out with it. One of my daughters suggested starting a blog rather than just put it out on Facebook. It felt right. One of my daughters shared her concern about how people are still staring at her in public and she didn’t want even more attention. I tried to assure her that people aren’t staring like “OMG Do you see what she’s wearing???” I tried to assure her that people are looking at her in awe that she has the strength to be up and out and still moving. I think people look at all of us and wonder how a body can contain and carry such heavy Grief. Still, my amazingly strong daughter said she supported my sharing this personal journey.

So, Did you catch that? Typical of me, I slide something really important in and then move right along hoping you miss it. I can’t let you miss this. Here it is again. I’m carrying that same silent killer inside me. I, too, have been diagnosed with a brain aneurysm. There. It’s out there. Folks, this can happen to ANYONE.

I have seen a neurosurgeon who suggested I wait a year and see how it goes. That was good enough for me and my friend Denial. For some reason, I keep hearing a whisper between breaths that I shouldn’t wait and I should go for the further testing now. Denial doesn’t like that plan. It’s only in honor of Nolan that I am listening to this whisper. I wish I wish I wish I had known the symptoms and taken him to the doctor. I’ve been told time and again that there really was nothing that could be done. His condition was so severe that no doctor would touch it, and even attempting to would most likely leave him in a perpetual vegetative state if not killing him instantly. Mine is not nearly such a big deal. Denial says it’s not a big deal at all!

The day of my initial test, I made a comment that came across as hurtful to one of my children, but I didn’t mean it to be that way. It was an honest statement. I said “I almost hope I do have what Nolan had that way I won’t have to worry about living another 60 years without him.” In hindsight, that was a horrible thing to say. But it was true that day.

The old cliche is true. Be careful, my Friends, of what you say and what you wish for. You just might get it.