My worst nightmare

I’m staring at the numbers on the wall unable to move, think or put logic to the unbearable pain. This is my breaking point and I have never felt so weak. Sitting in the very same room that I ran into when my first son Patryk stopped breathing, right before we lost him forever. Just starring at the room numbers on the wall and then back down again to the floor where I collapsed all those years ago. Reliving the memory of screaming for someone to save my son as he turned blue and was unresponsive in the room down the hall. I am reliving my worst nightmare and all for the hopes to find answers for what is currently happening to my son Maxwell. I’m trying to be strong, but it’s all too much. I thought I handled my grief the best I could, but maybe I should of dealt with the possibility of being back at this very hospital sooner. I was thrown into a situation that for myself is my worst nightmare, every hospital room I was in with Patryk and all the same doctors and nurses that cared for him right in front of me, this has pushed me over the edge. Of course everyone tells me to be strong, “God is looking after you and you are in a good place with excellent doctors,” but really, truthfully, I don’t want to hear that right now. That isn’t going to help at this point, I’ve decided to not think at all about any of that, because it didn’t help Patryk. Right now I just need to find answers for Maxwell and help him while trying to maintain the small amount of sanity I have left.

On Friday morning everything was perfect, the baby was happy, Maxwell was happy and running around chasing our dog Olive. Then Maxwell and I sat on the floor talking with his baby sister about how cute she was as she smiled and giggled at us. My adorable toddler was in such a good spirit that morning, joking with me as we sat talking to sissy that my legs looked like Daddy’s beard! I laughed because they did, I hadn’t shaved in I don’t know how long because we had a stomach bug earlier that week in our home. Sick babies needed my help more than I needed to shower and shave. Then everything change in one second…I thought Maxwell was playing a joke at first as he went down in slow motion onto the ground. Thinking maybe he was getting his car from under the pack and play. Then when I turned back a few seconds later and saw him still laying there I ran as fast as I could over to him. He was having a seizure! My baby girl was right next to me completely silent as I called 911 and begged them to send help. It was probably three whole minutes he was seizing, but it felt like hours. When the ambulance got to my home Maxwell was coming to. I remember the first responders being there, but I can’t remember there faces. I was in a complete state of shock not knowing what to do or how to collect myself. Seeing a child seizure is the most terrifying site, add that to losing a child before and it’s too unbearable. The EMTs grabbed my daughter placing her in the car seat as I ran around the home grabbing formula and a diaper bag before getting into the ambulance.

When we arrived at the hospital ER I quickly realized that my daughter was still not making a peep, but looking very intently at everything and everyone around her. This was the most intuitive baby I have ever seen. She held her composure while her brother was in need of help. My family arrived at the hospital ER room shortly after we got there. The doctors ran all test necessary and since he had no fever at the time of seizure they ruled out febrile seizures. They sent us home after a few hours and everything seemed to be looking up. When we arrived home the plan was to send someone out for soup that my son wanted while my mom was helping with Maxwell. Now, I could finally attend to the babies needs for a bit, wanting to cuddle her since I know this was a traumatic event for everyone. I was still a nervous wreck trying to stop staring at the spot on the floor where Max first seized when all of the sudden my mom was yelling at me to call 911. Maxwell began to have another seizure in her arms just fifteen minutes after returning home. Dejavu was the only feeling besides numbness that was present as I called 911 and awaited paramedics to return. We arrived at the hospital going straight to the ER and back into the same room we had just left. The doctor made a decision to have him transferred via ambulance to a hospital with a pediatric unit, the closest and best option at the moment for Maxwell concern was the same hospital that we lost our son Patryk at. There really was no choice but to take him where he needed to be. There are no words to describe the terrifying thoughts I had running through my head once I realized where we were going.

Now I know why so many babies are born in the back of ambulances, wow is it bumpy! You would think in life threatening emergencies it would be important not to bounce around like that. I would also like to personally thank the idiot truck driver that pulled right out in front of the ambulance. This causing the driver to slam so hard on his breaks we were lucky not to all be needing a stretcher. Like I didn’t have enough to worry about with Maxwell and going to this very place that for me was like walking into Hell. When we got into the room and all of the horrific memories came flooding in I was unable to process the range of emotions I felt. Holding back tears as much as possible, trying to stay in the present, all while updating doctors on Maxwell’s condition. I couldn’t help it, in the moments of silence I found myself reliving that nightmare starring at the numbers on the wall and back down again to the floor that I collapsed on years ago. Why was this happening to my child and why did we have to end up here? In a time that I needed to be strong for Maxwell I was struggling so badly to stay sane. I don’t think any parent could handle this situation because its an impossible hell to relive. I was about to feed Maxwell his first bite of soup that my dad had just brought to the hospital when his head dropped down right in front of me and he began to have the worst seizure so far.

Was it the worst seizure so far? I really couldn’t tell, it just felt like it was one too many for me to handle at that point. Every seizure was about three minutes and pretty intense. Looking at him on that hospital bed unresponsive was another hell I was not ready to handle, regardless of the reason why. Yes seizures happen all the time and yes he would be ok all the nurses and doctors kept telling me, but we didn’t know why this was happening to him. We also didn’t know what had happened to little Patryk, so at this point all reason and logic did not matter. When Maxwell is ok again and we have that “one” normal day I will be able to breath again. Till then no words can comfort me at this point; or so I thought, until two days later in the hospital when a familiar face walked into Maxwell’s hospital room.

As quickly as she walked over to Maxwell and myself my heart began to break all over again. She was the one doctor that I hold dear to my heart for everything she helped Patryk through. Her heart is in her job and it shows. I always wondered how I would feel if I saw her again and don’t get me wrong it was hard and made me sad all while making my heart happy. She was there for Patryk and I was reminded of that when I was in front of her. This special doctor of little Patryk’s was the first person to say something that helped snap me out of my current depressive state. I told her it was all too much being there and her response was “maybe your hear for a reason, maybe to know Patryk is with you and looking after his brother!” In that moment my hell became a little less dark. I could see a small glimpse of light and she reminded me with more than she knows to hold on to my faith. What was weird, I felt like what she said was so true and it gave me chills inside. Patryk must be here looking after us, I know it. That’s when I decided to pull myself together and stop sulking in the past. Getting through the next few days was not easy, but I was able to handle it much better after talking to her.

Maxwell continued to have strange EEG behavior that wasn’t typical seizures, but still possibly seizure activity. We started medication to control the seizures and were sent home after four days and five excruciatingly painful nights at hotel impossible. Since returning home we have had an even harder time with Maxwell’s current behavior. It was to a point we almost ran to the ER yesterday. We couldn’t keep him safe and his outburst were so out of control I just cried wishing I knew how to help him. It is possibly the medication and he is no longer taking that drug as of yesterday. Hopefully in a couple days when its out of his system we will see our sweet, shy Maxwell again. I miss normal…I miss sleep…I miss my Maxwell.

I took the deepest breath today that I’ve taken in weeks since this all began. My sweet, shy, and mischievous little boy woke up for the first time happy. It was defiantly the drugs causing a severe physiological reaction. This was the second seizure medication they attempted due to his first reaction in the hospital. The doctors plan was to take him off all drugs and see him at his base line. Also to see if the seizures came back, since there is a possibility they wouldn’t. As terrifying as it was to take him off all drugs it was the best decision with his current state, but the waiting to find out if the seizures would start up again makes my stomach turn. Well my stomach is also uneasy because I just got over having that atrocious super bug going around. I couldn’t even believe I was sick on top of everything else. So for two days I was out of commission while everyone else had to call into work to care for the children and take Maxwell to the doctor. Thank God for my family!

Day two of Maxwell back to being a normal kid and things were going good. My dad decided to run to the store for me while I stayed with the kids. This was the first time alone with them since that awful Friday morning where this all began. I was nervous and excited because it was one more step in the directions towards normal. About ten minutes after my dad left while I was on the phone when suddenly Maxwell began to have a seizure. I very quickly threw the phone down to grab Maxwell. Then, instead of calling 911 I placed Maxwell on his side on the couch where I stayed next to him and called the neurologist. The video I sent him confirmed it was a seizure. This one was different from all the rest and lasted a total of at least twenty minutes with him coming in and out of the seizure at times. Can I pause and say something right here…I don’t care if people have seizures all the time yadda yadda yadda (as some doctors nurses or others will say so lightly)… It is gut wrenchingly terrifying to watch your child go through this and you feel hopeless to help them.

I have hope…For the first time in weeks things seem to be going towards a somewhat positive direction for Maxwell. The new drug he is on seems to be keeping him seizure free the past four days with minor behavioral issues. I can handle this! We can work through this! Things have even felt a little more normal at home the past two days with finding time to put away things that have been thrown anywhere and everywhere in the midst of ciaos. I am scared for the future with Maxwell’s current new health condition, but I’m ready to pull it together and do whatever it takes to make him the happiest boy in the world. Whatever it takes! He is my world and my children mean more to me than I can ever explain. I know some people say put yourself first so you can be the best mom to your kids. I believe you put your kids first and you will become the best version of you possible! I don’t know how I weathered this storm and I know it may not be over, but I’m finding my strength again and refuse to let go of it. I’m looking at the Heavens and thinking of you little Patryk, God is giving me strength as are you my beautiful angel.

Looking back on the past three weeks I’m not sure how I made it through my worst nightmare. Reliving Patryk’s death while watching Maxwell’s health suffer was a pain no mother should ever feel. I’m sure I haven’t even begun to process all the emotions I’ve felt, but in time I hope to have a good old emotional breakdown to let it all out. It needs to come out! Holding in all that emotional evil can kill someone. For now I’m going to continue getting Maxwell back to health and happiness while I slowly begin to get back to the new normal, my son with a unknown seizure condition. The new concerns I have are will he have a break through seizure on the medicine, get hurt playing at the park or riding a bike. Will I be there to catch him if he falls or just be there at all to help him through a seizure. This is a whole new ball park I’ve never been to, so please share away if you have any helpful advice, especially if you have been through or are currently dealing with seizures. Also thank you to everyone who has been there for my family and are continuing to through this difficult time in our lives. The love and support we feel from you all is the best medicine that we could pray for during this ordeal. We needed you all, each and every text message, email, Facebook post, grocery store helper, present giver and most importantly for every prayer thank you!

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  1. WM, your bravery is enormous. Sending you and your family strength, hugs and prayers. There are so many new solutions to health conditions that are being uncovered every day. So we’re praying that they discover the cause and present a solution right away, so that you can all be well and happy again. Believe and have faith. And be sure to take care of you, too.

  2. WM,
    After reading your updates and drying up my tears, I am hopeful that your son’s condition has improved. What a scary experience. I can only imagine the slew of emotions that you have been through and I admire your courage and strength. Thank you for sharing your story and recipes; the good, the bad and the ugly.
    Sending you and your family, positive thoughts for strength and love and prayers for the doctors to determine the cause & best treatment for your son’s health.

  3. My heart goes out to you and your family. I am so sorry for your loss and all the pain you have gone through and are continuing to endure. Your family is in my thoughts. Sending love your way.

  4. Your post takes me back 19 years. Although I had not had the gut-wrenching experience of losing a child, my son started having seizures when he was 3 years old, completely out of the blue. You’re right, it’s never easy to watch someone seizing, but when it’s your own child there is nothing more devastating. Many ambulance rides, many neurologists, and no answers. As a parent there are few things more frustrating. I did my own homework to no avail, there was virtually no consensus among the medical community except that no one is really sure what causes it, what can cure it, and what each individual prognosis is. I am not a religious person, but I asked god to give me the affliction and let my son have a normal childhood and life. I cried rivers of tears and cursed everything and everyone. I hated the world.

    At the time, the drug of choice was Tegretol. Like your son, mine became a bit of a monster when medicated. I think he realized it as he hated taking it and I remember dreading “Teggie Time” daily. After almost 2 years of medication and no seizures, I finally experienced a moment of profound maternal intuition and decided to stop his meds. I didn’t bother to ask the doctors, they were always the first to say “We don’t know”.

    We were incredibly fortunate and he had no more seizures, I had my beautiful boy back. When I asked the doctors they all responded that about 50% of childhood onset seizures are simply “outgrown”. Today my son is 6’4, an excellent athlete and finishing his last year of college. I hope Maxwell will be one of the fortunate 50%.

    As my daughter likes to remind me, that which doesn’t kill you only makes you stronger. Stay strong.

    • Joan, I can’t thank you enough for writing me. I’m in tears, emotional happy ones! Hearing that there is hope from someone who has been there is exactly what I needed to hear as today has been quite a difficult one. Thank you ♡

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