I stand corrected x 3

Most important of all-he's fine! Everybody's fine. 

In the middle of an absolutely ordinary afternoon at home yesterday, Jack's body decided it was seizure time. I was at home but downstairs in my office. Melissa handled everything great, got him on his side, and noted the time and yelled for me who came running up the stairs to see my child blue and seizing. It was over quick and the post-ictal period didn't last long either. Having now experienced 2 breakthrough seizures with Jack, I recognize that a breakthrough grand mal seizure while scary is not nearly as dramatic as his unmedicated didn't know he had epilepsy seizures. 

Did it scare me? Of course, it did! Was I overly concerned? No, I was *trying* to be chill. I called our family doctor during the event for reassurance (he's the best) that we were doing all the right things and then left a message for our neurology team on the voicemail I reached at the office at about 215 pm. I also sent a non-urgent message through the portal since there isn't an urgent message option. 

I told family doctor that I didn't think I would hear back from neurology since it was late on a Friday and Jack's neurologist is on maternity leave. So we had a plan, he was going to call in an increase in seizure medications to the pharmacy in case we didn't hear back and said that we would just allow neurology to adjust as they saw fit whenever we heard from them. For anybody keeping score, it took me several days to get a call after Jack's second grand mal seizure which gave him the grand title of an epileptic. 

At almost 5 pm, I received a call from the very nice neurologist covering for Dr. Gantz who gently chided me that a breakthrough seizure is an urgent matter and I should call the office or the doctor on call not send a message through the portal. I advised that I did also leave a message at the office before closing hours. Once we got through that, she says okay, it's been a couple hours so have you already gone to get his shunt checked? Um, no, ma'am. Another gentle lecture....as long as he has the shunt, he needs to have the shunt checked every time he has a seizure unless there was a known reason for seizure like missed medications or sleep deprivation. It is, in fact, a medical emergency and I should already have him at the hospital. 

So, I tried to remain calm, told Jack we had to go, and packed up the favorites as well as chargers. Off to the ER, we go where the front desk nurses nonchalantly (kind of like me) say but it was a short seizure, you didn't use rescue medications, why are you here? Because the neurologist told me I had to bring him in to get his shunt checked. Well, okay and they check us in. 

It was Friday, the 13th, y'all. Friday the 13th in the ER. A few traumas came in and a child started screaming. Jack has recently developed a severe aversion to children cry-screaming and ran back out past security. The sweet security staff secured us some headphones (🤦🏻‍♀️ forgot those at home) so I could Jack back into the waiting room. 

The sweet nurses got us triaged and realized that Jack would not do well back out in the big waiting room so they let us wait in a smaller waiting room in the back until a room was ready for him. 

Finally got to the room and received the lecture about the shunt again from both the resident and attending ER doctors. 99% of the time it's not the shunt but that 1% is an emergency and I should always always always bring him to the ER if he has a seizure. Shunt series and CT scan and a corrected miscommunication and a few hours later, an agitated Jack was discharged with an increase in seizure medications. 

I am so happy he's fine. I am so proud of myself for not freaking out. BUT I am annoyed. If you know me, you know I take care of Jack and I follow the rules. [Hopefully you also know that I firmly believe that God loves you and wants to be in relationship with you, too but that's a different post]. 

I AM A NURSE. I AM JACK'S MOM. I have taken him to the ER on numerous occasions because I either knew we had an emergency on our hands or we couldn't rule out an emergency without getting checked out. No one has ever told me that he has to get his shunt checked every time he has a seizure. He's been diagnosed with epilepsy for 3 years and the seizure that earned him the diagnosis didn't get a trip to the ER or the shunt checked. If you Google, when is a seizure a medical emergency, shunt doesn't come up 🤷🏻‍♀️

The American College of Emergency Physicians says, "Call 911 or the local emergency number immediately if:

The seizure lasts five minutes or longer or is repeated.

Injuries have resulted from the seizure.

The person experiences persistent breathing difficulty.

The person having the seizure also has a fever.

The person experiences persistent confusion or remains unconscious.

The person is pregnant, is a diabetic, is injured or appears to have life-threatening conditions.

This is the first time the person has had a seizure, or, in the case of an established epileptic, the seizure represents a marked change from the type or duration of seizure typically experienced." (https://www.emergencyphysicians.org/article/know-when-to-go/seizures#:~:text=Call%20911%20or%20the%20local%20emergency%20number%20immediately%20if%3A,seizure%20also%20has%20a%20fever)

When was this new rule made? Our family doctor wasn't even aware of this rule. If my well-educated self doesn't know it and my very trusted very well-educated family doctor doesn't know it, I bet you didn't know it either and maybe you are the caregiver for someone who has seizures and a shunt so here's my PSA-any seizure in the presence of a ventriculoperitoneal shunt is a medical emergency and the person should be taken to the ER to have the shunt checked. 

Now, I know and I hope to never need this information again and I hope none of you do either. 

Surrender

 If you grew up going to a Southern Baptist Church with your grandparents like I did, you may remember the hymn , "I Surrender All".

Here are the lyrics:

All to Jesus I surrender

All to Him I freely give

I will ever love and trust Him

In His presence daily live

I surrender all

I surrender all

All to Thee

My blessed Savior

I surrender all

All to Jesus I surrender

Make me, Savior, wholly Thine

Let me feel Thy Holy Spirit

Truly knowing that Thou art mine

I surrender all

I surrender all

All to Thee

My blessed Savior

I surrender all (ooh)

Ooh

Ooh

Ooh

All to Jesus I surrender

Now I feel the sacred flame

Oh the joy of full salvation

Glory, glory to his name

I surrender all

Oh, I surrender all

All to Thee

My blessed Savior

I surrender all

Oh, I surrender all

Oh, I surrender

Ooh, yeah

What I think is a beautiful version of it on YouTube can be found here: YouTube Jacinth Studio I Surrender All Lyrics Video . 

I grew up in a home void of wealth of the monetary or loving or sanity kind. So when I heard and sang along with these lyrics, I found the song to be downright beautiful but honestly thought that it only meant I was to surrender my sins and try to be a better person (in my own strength best I could) and if I had any wealth, I was supposed to give that over, too. 

I heard a portion of this hymn recently incorporated into a worship service and remembered how much I loved it and searched for the full lyrics and a lovely choir version online. 

And, for the first time, I think I heard it. Surrender...not my own power...not my own strength.....

I decided to look up the origin. Apparently, there was a man who was artistically gifted who was a teacher to others but also passionate about Christ. Someone convinced him to become an evangelist and he was inspired to write this hymn about surrendering his whole life to Jesus that he might do Jesus' will and tell others about Jesus' great love for them. Beautiful story. 

This hymn, like the Bible, is not saying oh hey Jesus, I am going to do my best for you. It's says I am giving my everything to you...my abilities, my strengths, sure but also my weakness, my pain, my struggles, I surrender them all to you and I am going to live my life trusting you and your plan for my life. I am going to believe your word, that you died to save me to make me right with God, that you promised to send the holy spirit to guide me and that you were are working out a good plan. There is no promise of prosperity. There is no promise of lack of pain, not until we get to heaven. 

My 51 year old brain finds this hymn so much more beautiful and powerful than my child without understanding brain ever did. 

Almost 3 years

 Here we are back in October, the month that the life I clung to ended. David would have been 67 years old in 2 days--my old man 🧓🤣😍 And I am truly, honestly struggling to find joy in my life. There *is* joy in my life. I mean I am Jack's mom and he is full of joy so often. He finds joy in the smallest of things. At 18, he is still very much like a small child in so many ways and his capacity for joy is like that of a small child. 

But there's something that isn't working right in me. Knowing the problem is the first step. I am and have been seeking help so I can keep my head above water and not sink into the depression that constantly threatens to overwhelm me. Thanks to a great God, a good doctor, loving and praying friends, I am still over here swimming away.  

Next week, I am going to see a new therapist, one that specializes in trauma because it occurred to me (thanks to a podcast and an anxiety attack at work) that perhaps, the trauma of finding my husband cold and gray and trying to do CPR which did not bring him back then watching my kiddo have a seizure where he turned the same shade as his deceased father just a few weeks later maybe, just maybe could be considered trauma and just maybe some of my childhood trauma could be why I can't seem to cope any longer. I mean I look like I am coping most of the time. I am doing what needs to be done but I know I am not me. And I know I can't ever be the Dave and Marie me again, well I still want to be her but I know that I need to accept that I can't be Dave AND Marie. 

So, next week, I meet with a therapist who specializes in trauma and my hope is that we get to the roots of my longstanding trauma and dig out and throw away the "coping mechanisms" that a small child, young woman, and middle-aged woman built up that aren't really coping skills and are holding her back from who her creator created her to be. 

Pray for me, friends, life is unreasonably hard for me, not my circumstances that's not what I am saying. Being alive is hard for me. No, I am absolutely not suicidal. I would never ever ever do that to Jack, let alone the other people who love me so don't panic. Just pray for me to remember what I believe--GOD! He has a good plan. I know he does. My beliefs and feelings don't currently align and I am desperately clinging to the life raft of my head knowledge as I bob along on this raging sea. 

26 days to 2 years

In just 26 days, it will be 2 years since the life I had cultivated over the 26 years prior ended.

I don't even know exactly when it ended. I can look up on a death certificate to find out when they "called it" but David was already cold and blue when I started CPR begging him to come back. I knew he was already gone. I just didn't want him to be. I prayed and prayed. I knew he was gone but begged God for a miracle anyway. I believed that this could not possibly be the plan. My husband could not be dead. He just couldn't. God wouldn't do this to Jack. To me, maybe... I mean i wasn't a perfect little wifey. But, certainly, God would not and could not do this to Jack who loved and admired and imitated his daddy. 

Family began arriving at the house. This was in the middle of the pandemic when we had been keeping Jack away from absolutely everyone. I had 2 thoughts--David would be so mad at me letting Jack be exposed to so many people and Jack won't be able to comprehend the loss of his daddy with everyone here. There was too much going on and I couldn't make sure that Jack knew his daddy wasn't coming back. I was honestly petrified that I would be spending the next long while trying to get Jack to understand that Daddy was gone and I couldn't go get him. 

Turns out that I was the slow one. Jack began to adapt nearly immediately. I told him that Daddy was gone to heaven and to my recollection, Jack said "with Nana, Aunt Teresa, Uncle J J, and Grandma." This may not have happened exactly like that the first time I told him. Memory is a weird thing. The point is that he seemed to understand and accept nearly right away that his daddy was no longer here with us. 

Nearly 2 years later, I am still struggling with acceptance. When talking to people, i often say we, like "we homeschool our son", "we live in Helena", "we always loved that show"....and in a way, I feel like I have just kind of been trying to hold things together until he comes back. 

I didn't actually think this or say it before now but it's almost like I have been waiting for Dave to come back so I would have my safe place to grieve him. He was my safe place. I don't really cry in front of other people and honestly Dave and I were not even people who cried much in front of each other. But as much as I could express and feel my feelings with anyone, it was with him. He's the one I *need* to talk to about how much i miss him and wish he was here. He's the one I need to turn to and remind him of the stupid/funny/random thing he would have done in that precise moment. He's the one i *need* to talk to.  And also, who else is going to make the irreverent jokes with me about how dare he go and die on me without taking care of a bunch of stuff first? And how dare he not give me some notice first since he knows I am a type A planner? He's the one who would say something really stupid that would at first confuse me and then make me laugh and then he would say you cannot post this or tell anybody as we would laugh until our stomachs hurt. 

I miss him so much. 

I stand before God like a spoiled toddler. God said, "no" and I am still crying and stamping my feet and flailing on the floor not willing to accept that i cannot have what I want. And I do feel God patiently waiting me out and like that stubborn toddler I do desperately want to crawl into his lap and take his loving hug and fall into the restful sleep I need but also I am still over here hoping this tantrum will make him change his mind. 

Dreams

When I was young, I dreamed that when i became a mom, that my children would feel safe and happy to be around me. As i grew older and realized that I really like order and routine, i realized that I was unlikely to be the fun mom. Dave was Mr. Jokester and spontaneous. I figured the kids would be running, jumping, and playing with Dave while i grumbled over cleaning up their mess, fussed about their grades, and told them to clean their rooms. 

Funny how dreams work though.....in 2005, Jack was born. Something shifted. I found myself making messes, banging on pots, riding a bike IN THE HOUSE, anything so that Jack would smile, have fun, and continue to develop. So here I am today, at 50, lacing up my roller skates and rolling around the skate park with my kid who always wants ME to hang out with him. 

Also, because of his OCD, Jack also likes order and routine so ......

learning to slide

One of Jack's favorite activities right now is going to a new local skate park. He rides his plasma car all over the place. Sometimes Elmo gets to ride on his own skateboard 

Sometimes Jack supermans and rides the skateboard himself. 

I pulled out my old rollerblades from back in the day and they broke so I got some good old fashioned roller skates so I can skate along 

I don't know all the proper skater lingo but Jack calls this sliding. 

It's been a minute (or several) since I have been on roller skates so I am not quite as brave as Jack and to keep up with him, I sit on my bottom and slide down some of these so he doesn't take off without me. 

At first, sliding on my bottom was the only way I could go down the "slides". I graduated to staying low and eventually being able to stand while sliding down some of the less steep ones. These slides cause me to roll faster than i am comfortable but I am learning to literally lean into the discomfort and let the ride take me far enough and I regain my footing. Seems like as soon I regain my footing though Jack is off sliding again.

If that isn't a metaphor for life.....

Temptation

Over the last 697 days, I developed a habit, an obsession. Facebook and One Drive have these lovely features that allow you to relive your memories on that date from as long as you have been posting/storing. I have been starting each day looking backwards, trying to remember what Dave was doing in each picture or why he wasn't in some pictures. In my head, i have been reliving all the things-the good, the bad, the mundane. Each day, i have been starting my life with Dave in it again. Throughout the day, I keep Dave present by ruminating about those days. I even laugh and argue with Dave in my head all over again like the moments are new. I miss Dave deeply because I love him deeply and he loved me deeply. This pain is the price of great love. I don't want to accept that he is gone and he's not coming back. He's not in the basement trying to figure out some stock thing. He's not just asleep in the bedroom because he stayed up way too late for no good reason and needs a nap now. He's not gone to the bank. He's not here, he's not coming back and I am sad, I'm angry, I am confused, and I don't know what I am doing with this life. I don't understand how this is part of God's good plan.  

But I am trying.....I told myself that I need to stop trying to live life in reverse and that I need to stay in the here and now with Jack, my family, and my friends. It's not really a choice anyway but Facebook keeps tempting me saying come on back here to the life you knew. It was different but it was mostly happy. 

I didn't know my life could get more different but here we are.