It's been almost exactly two years to the date that Madelyn had her first seizure. I certainly didn't know at the time that it was a seizure that she was having. Her eyes glassy, arms jerking slightly for about 30 seconds. I didn't know that she would go on to have hundreds of seizures up to this point even with being on an average of 3 seizure medications at once to try and control them. I didn't know that she would be diagnosed with a rare seizure disorder that is known for difficult to control seizures. AND I certainly didn't know that I would live in fear every single day of what the seizures might steal from her. I was terrified of what was wrong on that day. I worked hard to convince myself that I was just a new mom panicking for nothing. However, that was proven wrong. I have remained terrified through the entire process including the start of the seizures multiple times a day, to the 1st EEG and the many thereafter, to waiting on the results of the EEGs, to the first hospital admission, to the next, through the diagnosis, through each doctor visit, through each night, through each change in medication, through each failure of medication and treatment option (so far 5 medicines and the ketogenic diet), and through each seizure as they currently occur about daily and vary in length from 3-5 minutes.
It feels like I am constantly holding my breath. Holding my breath throughout each seizure, wondering if I will need to administer the rescue med. Waiting for any of the risks that we've been warned about to rear their ugly heads. These risks include medication side effects, regression of skills, and the scariest of all....SUDEP (sudden death of epilepsy). It feels as if we are fighting a losing battle at times against these terrible seizures. The way it was described to us by our neurologist is that she may respond to some medications, but it is likely that after time (an undetermined amount of time) it is likely that her brain will find a way around the medication and the seizures will return. Not so reassuring. And this is what has happened so far. BUT, I hang hope on the fact that Madelyn isn't having hundreds of seizures a day like some other kids with her disorder and that there is not much known about this disorder or how some medications may help. I'm so fearful that her seizures will increase and ramp up. After all, our doctor told us that this will likely happen too. That they'll get worse. That they will be difficult to control. That she will likely develop new types of seizures over time. And again, this is what has happened so far. In fact, at our last neurology appointment, the doctor walked in, asked how things were going, and as we told him about the increasing frequency of seizures, he shared that he isn't surprised and that she seems to be following the typical course of CDKL5. And so, like I said, I continue to hold my breath. As I'm writing this, I'm interrupted by....you guessed it, a seizure. Madelyn's been asleep for about 90 minutes and it is usually around this time that the seizures happen. As of late, it has been less predictable but let's be honest, her seizures are anything but predictable. Lately, I have been waking up in the middle of the night to her having a seizure. I sleep with her. Yes, I still sleep with her. Honestly, I'm terrified not to because of the seizures. Typically, because I'm right next to her, I can hear the change in breathing and I know. Otherwise, on nights like tonight, I know the seizure is happening because I'm watching her on a monitor. I see her eyes widen, her arms spread and then begin to convulse, and then I rush upstairs to be with her. I can't do anything else but be with her, make sure she is safe and watch the clock in case her seizure lasts longer than 5 minutes and I have to administer the rescue med. Again, I'm holding my breath. I don't turn on the light because I don't know if she's sensitive to the light. I sit there in the dark watching and waiting. It takes her what feels like forever to take a breath after her first big convulsion. I remind myself to breathe along side of her breath. Breathing changes are common for her. Her arms jerk every so many seconds and she starts the seizure off with grunts and then they turn into screams. Really horrible screams. I rub her hands. I tell her I am there with her. Sometimes, I tell her it's okay and then I think to myself it is NOT okay. Generally, the seizures last about 4 minutes around which she starts crying and moving around slightly indicating that she's coming out of the seizure. Typically she cries for a while and no amount of consoling seems to help. And then, she goes back to sleep. And it is done. Except, I don't really know that. I have no idea what she is experiencing. If she has headaches or pain or discomfort. And, I may never know. I want more than anything to be able to have what seems like the unattainable "seizure control." It's not infrequent that I get reminders from either the doc or the nurses that this might be the best we get. But I won't give up hope. I've seen many kids gain some control for a decent amount of time, and as long as Maddie remains happy, I'm willing to try whatever we can to prevent these things. Unfortunately, sometimes it is a balance of having seizures or having a good quality of life. What a terrible decision to make that is. For now, we continue to trial and hope and pray and wait. Wait day by day while tracking and logging seizures hoping that today none have to be logged. Or tomorrow. Because seizures aren't just seizures. I know that in the past didn't realize how detrimental and scary and horrible seizures are. I thought they were just seizures. I didn't know the fear. But now I do. I know that I'm fearful that the seizures will cause her to regress. That she'll be tired and not able to continue to work towards her goals. That we'll lose her personality. That we'll lose her smile. That she'll lose her vision. That she'll have a seizure that doesn't end with or without intervention. That I won't know that she's having a seizure. That the seizures will decrease her muscle tone and make it difficult for her to do the skills that she has works SO darn hard to attain. I'm sad for her. I can't imagine how scary it is to have seizures daily. To not know what they are or what she just experienced. To feel their effects and not be able to communicate with anyone about it. To not be able to tell us what she wants or if something we're doing isn't helpful. To not be able to tell us how the medicine affects her. This makes me so incredibly sad. While I am incredibly sad, I believe Madelyn is trying to teach me to stop giving the seizures SO much power in my life. She certainly doesn't. She wakes up like nothing happened. She SMILES so bright that you wouldn't have any idea that she just experienced such horror. And she pushes and works herself so hard to learn and attain new skills that she isn't giving seizures the power to take over her life right now. I'm so proud of her and all that she has accomplished despite constant setbacks. And how she radiates light and joy through it all. She is teaching me to breathe again. I'm learning to breathe when I see her smile. When I see how strong she truly is and how happy she is. As I think back to the first time she had a seizure, I don't celebrate this anniversary. What I do celebrate, though not enough, is Madelyn's resilience. That she is a constant source of inspiration. That no matter how many seizures she has, she will always inspire me and hopefully those who come in contact with her. I celebrate that the very being that I gave birth to and and breath to is teaching ME to breathe, to fight, to have hope and believe.
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I love plans. Ask Brian. It's pretty common on the weekends for me to say to him, "what's your plan for the day?" I think it drives him nuts, most days. In fact, I KNOW it drives him nuts, because he tells me so. He usually tells me he doesn't have a plan and that I need to relax and let whatever happens, happen. And I usually respond with, "I can't." Plans give me structure and provide me with a sense of organization and peace. Perhaps the peace is an illusion. But I know that I definitely don't have peace when I try to go with the flow of the day and let things happen. The funny thing is I KNOW plans don't ever go as planned. So why do I rely so much on them?
When Madelyn was diagnosed, life immediately became chaotic. I suppose it already was, prior to the diagnosis, when she started having medical concerns. But it became REAL, real fast when she was diagnosed. We KNEW the future was unknown and there was nothing we could do about it. That should have been my first lesson in letting go. Ugh, if only I could do just that. So, the crazy life began. A life of digging out of the depths of an unknown reality and coming to terms with the day to day that is so different than the day to day i had PLANNED. I struggled with letting go. Letting go of my hopes and dreams for Madelyn's life the way I planned it. Letting go of my hopes and dreams for our family's life. Letting go of what I thought was going to happen. NOPE. Plans? What plans? Just throw them straight out the window. I was now faced with an unclear path and it was overwhelming. There were new physicians to link with, new appointments to make, medicines to organize, info to learn and resources to find. On top of that was be a mom and deal with the everyday mom stuff like breastfeeding and pumping, manage everyday life, deal with the emotions related to Madelyn's diagnosis, work and be productive at my full time job, continue to be a good family member in a time when my family really needed it (My dad died when I was pregnant and my brother was diagnosed with Leukemia only about a week after Madelyn received her diagnosis), be a good friend and oh yea, take care of myself. I found myself looking into the future, the near future, with panic and fear. My new motto became and still is take one day at a time. No longer could I trust that I had enough information about the future to confidently make plans nor could I handle the stress of thinking about it. And I certainly wasn't ready to let go. This was at a time where I REALLY had no idea what the future would look like. I know we never do, but when it comes to being told that your kid has a very rare genetic disorder, could have hundreds of seizures a day and will have severe delays, the future sounds nothing like a future I've ever thought about or could imagine living through. So, one day at a time got me through. Not plans. Living moment by moment and focusing only on the present is what I needed. And soon, that led to having more information about the potential future. I lived day by day and Madelyn got older. Even in only 2 years, we learned that her seizures weren't as severe as hundreds a day or even multiple a day. We learned that she is making progress developmentally and isn't as severe as she could be. We learned that the future I had planned upon hearing her diagnosis, isn't as horrible as I planned it to be. Overall, we learned that there is hope and the future isn't as dark as those initial days. And we learned we could do it. Even without knowing what the future would maybe be like and without making plans. Okay, so this all comes at a time for me where I am struggling with this. I am doing so much better than I was less than 2 years ago. But I'm still struggling. Madelyn has failed several seizure medications and treatment options and continues to have regular seizures. Our neurologist recommended that we have the VNS, vagal nerve stimulator, placed to try and control seizures. It requires a surgery, with risks of course, and is a more permanent option i.e. there will be scars that can't be taken away if it doesn't work. I'm not thrilled at all with this option, but when the neurologist expressed concern that she is at a higher risk for sudden death of epilepsy (SUDEP) because of her night seizures and told us this is the only option that has been shown to lower the risk of SUDEP, it was a no brainer. So, we scheduled the surgery and planned it. And wouldn't you know, Madelyn got sick the day before. She was supposed to have her surgery on Friday. We went in to meet with the surgeon and she had a fever. After reviewing risks that I didn't like, he informed us that she couldn't have the surgery because of her fever. His response, "it's no ones fault, we'll reschedule." When I shared my fear that it is the season for sickness, the nurse shared: "That's why I tried to rush her in. We'll keep playing this game if we need to." So now we have to wait 3-4 weeks before they will operate. UGHHHHHHHHHHHHH. A big fat UGH. I didn't think it was anyone's fault. That's not why I am sitting here with tears in my eyes. No, I'm upset because I'm the one that has to watch my daughter struggle with seizures day after day. The fear in her eyes as she is having them, the screams of terror. I'm the one that has to worry about the risk of SUDEP each day and night. The one who has to pump my daughter full of medicines to try and prevent seizures. The one who has to clean up vomit because the GI doc is waiting till after "the surgery" to make too many changes to help her re-occuring vomitting. So no, I don't care whose fault it is and no I don't want to keep playing this game. I'm upset that I anticipated this surgery, which I don't really want her to have, but am trying to have hope that it will be better for her, and now she can't have it for another 4 weeks or longer. I'm struggling with fear of what the future will be like if we have to wait 4 weeks. So what happened to day by day? Well, no one ever said it was easy. I have to constantly remind myself of that. There are constant reminders of the future and the plans I could be making with every worry I have or every facebook post I see. Being a part of special needs support groups online has its pros and cons. It is a daily battle for me where I consider various extremes of deleting my facebook, removing myself from groups, or obsessively reading all posts. You see, this journey is isolating because not many people get it. People don't know what to say and instead say nothing at all. I'm guilty of this too in different circumstances. But it then leads to loneliness. So finding a group of people that get it, is so important. On the other hand, finding a group of people with a commonality doesn't mean that each experience will or should be the same. Just as our future emerged differently than what we initially were told to expect, each person's journey and future is going to be different. The risk? Well the risk, for example, is that I might choose to avoid a medicine that the group spoke negatively about, when in fact it could have been "the one" that helped get seizure control for my kid. The group might give guidance to prevent pains in the future or it may give guidance to cause more pain in the future. It may help make plans or it may crush plans. And if anything, it is a constant reminder of the future. As I said, the daily battle ensues. So as I work to reconcile the latest emotions of not being able to have the surgery as I planned, I remind myself of my motto. I need to get back to one day at a time. I just re-read a quote I found and have posted on Madelyn's Facebook page that helps me remember that she is who she is no matter her genetic disorder and her future is not limited, no matter what. "This is the first time there’s ever been you, So I wonder what wonderful things you will do…" I love this. It is letting go of expectations and plans, and letting things happen. Without restriction. It isn't putting too much on what other's experiences are or what the odds are, but instead it is living our own life, day by day, with the beauty of each day being a new day with all new hope. It is taking one day at a time and cracking open the joy or fear or pain that comes with it, but letting go of it when the next day arrives. All we have is today. The only thing constant is change. Plans? Who needs them. Embrace today. Embrace change. Let go of your plans. (Wow, I sound like a therapist. ;) ) Want to make plans? Nope, I'm taking one day at a time. I wake up and am laying in bed. I'm off today for a variety of reasons, mainly because we have several appts and Madelyn was scheduled to have surgery tomorrow. But also, today is our 4th wedding anniversary. We've been married 4 years, got engaged 5 years ago and have been together almost 7! As I lay in bed, I think back to my wedding day 4 years ago, reflect on the day and reflect on Brian and I's relationship. What a journey we've been on. I realize that 4 years isn't really that long, but we've lived lifetimes in this time. I met Brian at a time of my life that I had just had a significant loss and couldn't imagine starting a relationship. In fact, I remember thinking at the beginning of our relationship, that it wasn't going to last. I just wasn't sure I was in a place where I was ready. But, as life has consistently shown me, unexpected things happen at unexpected times. Brian and I spent our first date chatting for hours over lunch. While we were both nervous, conversation came naturally. Over the course of the next couple years, we spent time getting to know each other, falling in love, discussing dreams of the future, and eventually planning a future together (as all good relationships go). We had the most perfect engagement, which occurred on my parents 41st wedding anniversary where my family had gathered at a lake house for the weekend. I couldn't have asked for a more perfect day to get engaged to the love of my life. We then spent the next year planning our wedding day. After many stressful moments, and pinterest projects (Brian tried to ban me from Pinterest :) ) October 13, 2012 was here! It was my wedding day! Of course we had an exciting day planned. One that included a lot of hard work, planning and special touches that we did ourselves to make it personal to us. And while I loved how everything turned out, it isn't the details that I spent a year planning that I remember. In fact, many of those details I've forgotten until I see pictures. What stands out most to me about this day, is the peace I felt as I stood with my father in the back of the church about to walk down the aisle. A peace, so great and strong (that I had never felt before) that I knew that I was making the right decision and that God was guiding me to this person. That moment is SO vivid in my mind and one I cherish. Of course, the rest of our day was a magical, stressful whirlwind where we had a lot of fun and were glad that everything went off without a problem. But let me go back to that peace I felt. Remember how I mentioned that significant loss? That fear that I wasn't ready? Well, while I didn't have these fears as our relationship went on, looking back that peace was exactly what I needed. Here I was at 26 years old, someone who had already loved and lost. I certainly didn't want that to happen again, no matter how it could occur. My heart couldn't handle it. And when you're about to commit to someone for the rest of your life, you want to know that it is going to be the rest of your life. For me, the peace was the confirmation that I didn't know I needed, that I would be okay, more than okay, that I would be loved and protected forever by this amazing man. Four years later, I can honestly say that this is the case. Brian has been my rock through this life. In the beginning I didn't know if Brian could handle my past. How would he respond? Well let me tell you, he responded perfectly. Brian may never truly know or understand how his kindness and gentleness and understanding at that time helped me fall deeply in love with him. Life has been tough during the years we've been together. Sometimes, it feels as if we can't catch a break. But through it all, that kindness and gentleness and understanding remain and we've stuck close together and make a great team. Becoming parents has been a challenge. About 2 years ago, Madelyn had her first seizure. Prior to that she was diagnosed with hip dysplasia. We started the special needs journey early on as parents. I was worried how Brian would be able to handle it. He's suffered from a lot of random physical symptoms through the years including headaches and pains (which were finally diagnosed as fibromyalgia). And I was worried it would be too much for him. But what happened, is quite the opposite. He stepped up. He found inspiration in Madelyn and chooses her every day over anything else. My love for Brian has only gotten deeper. Brian is an amazing father. The best father that Madelyn could ever have. He is lucky enough to be a stay at home dad and caretaker for Miss Maddie. They are together all the time. Because of this, they have the most amazing special bond. The way Madelyn looks at Brian is so beautiful and amazing. It's like he is her ENTIRE world when she is staring at him. The way he interacts with her, cares for her, makes her laugh and SMILE so bright makes my heart so full of joy. They have so much fun together, and so much love for each other, and while sometimes, I wish I shared the bond that they have, I wouldn't want it any other way because it is such a perfect love and bond. That peace I told you about? That understanding and kindness? It was all leading up to this. Leading up to the moment where the man I married would become the father of our child, and would be the most amazing thing in her life. In OUR lives. Where day by day, I would stop in awe of their love for each other. Where day by day, my love would get deeper and deeper as a result. I have so much respect and admiration for Brian and what he does for Madelyn. I work full time and he takes care of Madelyn full time. It is what is right for our family given many different circumstances. He has very long, tiring days taking care of her, taking her to all of her appts, making phone calls, organizing our lives to make sure everything stays on track, watching her struggle and comforting her when she needs it. I've told Brian several times, but I truly believe that his calling in life is to be a parent, but not just any parent, Madelyn's parent. He is laid back and fun. Organized and disorganized. Structured and flexible. Positive and encouraging. He gives Madelyn the balance and support in life that she needs. For that matter, he gives these things to me as well. This life is hard, but Brian and I are a team. We were a team before Madelyn and we're even more a team with her. This life would be so much harder without him by my side, without us being able to work together and be partners through this journey. I'm so very grateful to have found the love of my life, who gave me life's greatest blessing in Madelyn, and who works every day to support, love and protect us each and every day. I'm so grateful to have that peace from 4 years ago, still stirring strong in my heart. |
AuthorHi, I'm Kristen! I'm a mother of a beautiful, but rare little girl and the wife of my best friend. I have decided to share my experiences on this journey in hopes to help others understand or help others in similar situations. :) Archives
October 2017
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