We are so relieved that Madelyn's surgery is over! The emotions that come with your child having surgery vary greatly. Anxiety seemed to take residence within me for the weeks leading up to it and though it is still present, it has shifted. I did my best to block the thoughts and fears that came up for me in the days leading up to her surgery. I knew that it wouldn't be helpful for me to give them life. Yet, I found myself with a yucky feeling right inside of my chest any time I thought of her surgery. As we got closer and closer to her having the surgery, the feeling deepened a bit. It wasn't a feeling that I thought something bad was going to happen, but it was the possibility that it could. The surgery wasn't really a large surgery, but when your child is having surgery, you surrender all control to what happens to them and that is huge. The night before the surgery I told Madelyn she was going to be having surgery tomorrow and that we were doing it to help take the seizures away and help her feel better. I told her that we love her very much and reminded her how strong and brave she is and has been. I held her closer and gave her extra cuddles that night. While there is, perhaps, some comfort in the idea of her not truly knowing she was about to have a surgery, there is also something yucky about it. Sure she doesn't have to worry and be afraid in anticipation if she doesn't know. But ultimately, she wakes up one day happy as can be, and then all of a sudden she is being put under and waking up with what I imagine to be intense pain or fear. I can't imagine what went through her mind, but I will admit one of my fears is that she might have thought we did it to her, that we caused her the pain. Deep down, especially after being with her the last 24 hours after surgery, I know that she doesn't believe this or if she does, she certainly doesn't hold it against us. But that doesn't make it easier to blindside her with things that she can't tell us how she feels about. She can't tell us afterwards what kind of pain she is experiencing or what she needs or ask questions for better understanding. And for me, that is heartbreaking. The waiting is certainly the hardest part. Because we had to reschedule this surgery one time, there was a lot of waiting and a lot of worrying about her getting sick and having to reschedule it again. Living in a bubble, trying to prevent illness during cold/flu season is not fun. Then there is the waiting at the hospital. Waiting with her, then without her while she is in surgery. There is the waiting for the doctors to tell how things are going and for her to wake up from recovery and then the waiting to see her. I was so nervous to see her. I was nervous that seeing her incisions would hurt so much. Seeing my sweet baby's body cut open and scarred was terrifying for me. And once I finally got to see her, it was indeed hard. She was tired and out of it, though awake, and looked sad. I accidentally saw some of the incision and it made me shutter. To be honest, I still can't bring myself to look at it. I don't do well with these kinds of things in general, never have, but certainly not now that it is my daughter. I cringe when I see glimpses of it because it reminds me of the pain that she has to endure, the physical pain from the surgery and the pain of the seizures that she has. And I get so angry and sad thinking about how unfair it is. But I also think about all that she has overcome and how strong and resilient she truly is and how she has already moved on from it. She is smiling and working hard to get back to doing the things that she typically does. And here I am struggling to look at her incisions and deal with the pain. Maddie has been recovering very well overall. Last night, she struggled to fall asleep and as I watched her tired little body try to rest, she would jerk awake and cry out hard cries. It was possibly seizure activity and possibly many other things since she just had surgery. Throughout the night this happened often requiring me to get up, rub her head to calm her and then try to return to sleep only to be woken up to repeat the same pattern. I haven't gotten much sleep and am exhausted. I'm exhausted on a daily basis, but this process wears you down. At that moment last night, I felt so helpless. She was exhausted, she couldn't sleep, and I couldn't do anything for her. I couldn't even hold her. Yet, I felt like it was on me to solve the problem and I didn't know how to. And finally, I had to surrender that I couldn't fix it and try my best to help each of us get the rest that we desperately needed. I know that she is so much stronger than I am. I often let my emotions get the best of me and get caught up in how unfair life can be sometime. And while I am busy doing that, Maddie is literally ear to ear smiles, with bright, twinkling eyes being her silly self. Enjoying life. Not keeping tabs on all that she is missing out on. Like me. For one, I'm really struggling with missing out on Thanksgiving and how once again, something gets taken away from her because of CDKL5. Because we literally got out of the hospital today, traveling or running around on Thanksgiving is not an option. Maddie is recovering, needs her rest and we don't need to risk infection or anyone grabbing or hitting the incision area. Not to mention, getting her in the car is quite the ordeal. We typically spend Thanksgiving at my parent's house. I can't remember a time that I didn't spend Thanksgiving there. That's 30 years of Thanksgiving with my family at my house. But not this year. Living a couple hours away from my family means that Maddie doesn't get to see them much. And so times like the holidays are usually guaranteed family time. But not this year. The past couple holidays have been more difficult with my dad passing, Maddie's diagnosis, my brother's diagnosis, and my brother passing. The holidays were always big days in my house. We had a house full. We ate, went shopping, ate lots of candy, and spent time together. Memories I hold close to my heart now. The magic of the holidays quickly subsided when reality of life set in. The reality that our hearts are hurting because the holidays will never be the same. I desperately want Madelyn to make and have those memories with my family that I have. And she can't. For many reasons. So this Thankgiving, I will yet again surrender and we'll try to give her some new, different memories. It will be quiet and we will try to cook if we are up to it, and some of Brian's family might stop by. And slowly but surely, traditions will form for Maddie as she grows up. And it will be great. But I'm still angry. Angry because we didn't choose to spend the holiday away from most family. Angry because we don't choose a lot of things that happen. Angry because of all the surrendering. But I suppose that is where gratitude comes in. Gratitude that we have family close to make memories with on a daily basis. Gratitude because Maddie is recovering well from surgery and happy. And Gratitude that I can learn so much from Madelyn, for example, she surrenders all every day, without complaint and still finds happiness.
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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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