On this day, 3 years ago, Lena had her very first seizure. It was by far one of the most difficult and terrifying days of my life. A day that plays over and over in my mind even now after all this time. From the moment we first knew Lena was sick, I spent every free moment I had researching. Every night, when Arthur and Eli would go to bed, I would sit up and watch Lena like a hawk while frantically searching online for information. Because Lenas condition is so rare, it was hard to come by but I found so much help through other MWS families even though Lena was about the 180th diagnoses worldwide. I wanted to know what was going on as much as I could and to be prepared for what may come. It didnt take me long to realize that seizures were very very common and that the chances Lena would have them were high so I set to work trying to figure out if there was a pattern. Types that were nost common, age when they usually begin, treatment options. I watched countless videos of every type I could find so that I may spot one one day if it came up. Arthur and I had already trained in CPR and choking procedures when Lena was an infant but I desperatly wanted to cover all I could. The reactions to what I was doing was mixed. Some people called me dramatic and a hypochondriac while others praised me for my cautiousness. I honestly wanted neither. What I was doing, what I have always done for Lena and will always do for her along with my other two angels isnt special. It isnt above and beyond, it is just what I am supposed to do. What I enjoy doing. Making sure they are as happy and healthy as possible is my main goal and ive never wanted to be seen as anything more than a mother, I just walk in different shoes than most do but I firmly believe that if almost any mother, and I really emphasize almost, were in my shoes, she would do the same. After talking to other families and adding things up I narrowed down a possible time frame to when a seizure could happen, if it were to. So I set up an appointment with Lenas neuro right away to discuss things. He was a little taken back by what I was saying. Here we have an undereducated 22 year old mother of two, in the office of a very educated neurologist, telling him her daughter may have only a few weeks before seizures start. Telling him what he needs to do instead of the other way around. He wasnt too keen on it at first but I wasnt leaving without a plan so he caved. He gave me dvds on seizures and how to handle them. He gave me a prescription for emergency seizure meds along with a video on how to use it and we set up the plans on what to do if it happens. I left feeling extrenely scared that this was even our reality but relieved that we had our plan. I spent weeks trying to prepare myself all while not trying to focus on it. Which is extremely difficult to do to say the least. It was about 3 weeks later when it happened. Lena had an appointment earlier that day and she was a little off. They started her on a new med so we slowly worked it into her current ones. With Lena, you cant ever go full dose in the beginning, it ends pretty badly we have learned. At around 11 that night I was doing laundry when I heard it. Arthur, my amazingly strong husband screaming. A sound that still gives me chills to think about. I run in to find him in tears holding Lena and she was turning blue. Not knowing what was going on or how to process, (all that getting prepared stuff just floated away from me) I froze. I just froze. One of my biggest regrets and something I am still ashamed about. It was like I was watching it happen from outside my body. Quickly my amazingly strong husband jumped into action. He laid her on the floor and by then she was breathing but violently shaking and not responsive at all. He turned to me and almost as if he read my mind, he went one step to the next, directing me to what I needed to do. I grabbed her oxygen and pulse ox machine along with her meds. I dial 911 and we start to count. Once I got to Lena, again I was frozen. I couldnt leave her. I cried, I know it isnt good to do but I lost it that night. I screamed at God in my head. I begged Lena to come back to me. I screamed at Arthur to make it stop. I was so incredibly angry that it sas happening. of all the things I have been right about in my life, I hated myself for being right about that. The ambulance showed up right after Nanny to take lena to the hospital. Arthur decided he wanted to go with her because I had to get everything together to meet them there. As they loaded them onto the ambulance, I see everyone in the neighborhood standing outside whispering. I began to scream at them, not a proud moment but I was losing it. As they drove away I turn back inside to get bags and see my baby boy, my innocent 5 year old little boy, in tears and curled up on the corner of the couch. I wanted to comfort him, I should have comforted him right then but I collapsed. I couldnt breathe, couldnt move, all I could do was scream. I had no idea if she would make it and the way she looked in that ambulance before they pulled off terrified me and really worried me that I would never see hetr alive again. Knowing my amazing little boy had also just wetnt through that and I wasnt strong enough to keep it together shattered me in a million pieces. I was so angry at myself for letting him down. After Nanna was able to pick me up off the floor I just grabbed him. I grabbed eli and squeezed him tight as we both cried. I told him how sorry I was that his life had to be this way, how sorry I was that I wasnt there for him as I should have been, and how I promised it wouldnt happen again. I would never again let myself lose it like that. As a mother of a sick child, we have to lose it occasionally. If we dont, we break until there are no pieces to put back. But we must lose it at times when it doesnt effect our children. As I drive to the hospital, about an hour away, my mind was rushing. I had no idea what would be there waiting for me. A doctor or a pastor? I couldnt understand why and had no idea how we could do this. It was during that long and scary drive that things cane in prospective. I realized I needed to live in the moment but also be as prepared as possible but content with not knowing what would happen. I had been fighting alosing battle. I learned that there are things we just cant prepare for. We can intellectually and physically but never emotionally. Watching all those videtos did help me to spot seuzures but there was no way they could prepare me for watching my daughter, my 18 month old baby girl have a seizure. But I also realized that in those times, in those moments, we can learn the most from. When I arrived at the hospital and found Lenas room I was so happy to see her bt she was still somewhat seizing. It finally stopped and we brought her home. While going home arthur and I made a more realistic plan. It has worked for us ever since but it never gets easier. Watching the pain my children go through is incredibly hard but how they handle it leaves me in awe and so so proud. They are my teachers and they do an excellent job. Im not perfect at all, I make mistakes and have my fair share of things im not proud of but I am so very honored to be their mommy. It seems like ages ago that it happened yet feels like yesterday. Still brings tears to my eyes. It was one of those days that just sshapes the rest of your life. Lena has come such a long way since then, she has surpassed what doctors predicted and has never let anything hold her down. The seizures have picked up quite a bit but we are much more comfortable in the situation and jump right into action, even aubri. What lena has done to me as a person, as a mother is incredible and something I an so thankful for but what she is doing in aubri and Eli blows me away. Our world is crazy and stressful, some days I dont even know how we made it through but I wouldnt trade it for the world. I am in no way deserving of such an awesome husband and incredible kids but they love me anyway. I am so so proud of how far we have come and know that no matter what life throws at us, we wil somehow get through it. Life can make you or break you and we choose to be made!!!!
Posted on: Mon, 01 Dec 2014 03:22:00 +0000
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