I have been feeling sorry for myself lately. I have days that are good and days where I just break down from all the mental stress. Day-to-day things have been okay. It's still overwhelming to me at times adjusting to three kids and the new routines we've established in the past month with the older two starting school. Everyone has settled into their routines well it seems, but me. I go through the motions each day, but still feel uneasy a lot more than I would like. We don't have much to update about Sophie's upcoming surgery. She's still having daily seizures, small ones, but her neurologist hasn't changed her medication lately since we are moving toward surgery. We had a meeting with the neurosurgeon on Wednesday and he gave us the information we needed regarding the actual surgery and answered a lot of our questions. He was going to get in touch with the neurologist and discuss what would happen next and then we were supposed to hear from the neurologist. I didn't hear from him by the end of the week so I'm hoping to get in touch with him on Monday. It seems like we'll be scheduling a date for surgery sometime in October, but nothing is set yet. Will keep everyone updated as we know more.
So back to me. This blog has become very therapeutic for me and today feels like a good time to use it for just that. It's interesting how a situation like this affects different people in different ways. I feel like the part that is the hardest for me is being completely out of control of certain things. There is so much of our life with Sophie that is normal that I can easily forget that she has TS and has the problems that she does. Then she'll have a seizure and it brings me back to reality. Or I'll go a whole day and seizures won't bother me and the feelings will hit me as I'm dosing out four different medications to give her before bedtime. I have moments that I just want it to all go away. It makes me angry. It makes me sad. It makes me question, "Why me, God? Why us? Why Sophie?" And every time the answer that comes to mind is, "Why not?" In talking about this together lately, Mike has made the point that really we have never had to go through something really difficult like this in our married life or otherwise. He's right. We've been so blessed. And we still are blessed to be going through this time with the amount of love and support that we have. Some people don't have the amazing family that we do who will drop everything to be wherever we need them to be and do whatever we need them to do. Some people don't have great health insurance like we do. Some people don't have the strong marriage that we do and wouldn't be able to survive this together. Some people don't have our faith and have nothing to hold on to in the most difficult moments. We have so much in the midst of a situation that is so hard. So why not us? It helps put things into perspective.
I've been reminding myself that I don't have to feel comfortable with it all yet. Or even feel okay with everything. Sophie is 2 months old now. It's only been 2 months that we've been learning about TS, how to care for her, facing brain surgery for her, and trying to figure out how to do all this while leading a day-to-day life with our family. I feel like I should have it all together by now. This is where the lack of control bothers me so much. So I grasp on to my faith and pull out my journal of Scriptures and quotes that people have sent me or that I have found on my own. And I find peace. I don't know how people go through things like this without God. Even when I'm angry and having words with Him (aloud at times!) it feels like I'm not alone. I know that I'm not alone. Yet, sometimes I feel like the only one that has this situation in my face 24 hours a day and it becomes all-consuming. So I continue to pray and go through the motions each day knowing that one day things will not feel so out of control. We have high hopes that Sophie's surgery will be life changing for her and all of us. There are no guarantees and the issues she faces with her diagnosis will remain to be seen. But, there is hope in that. I am learning the art of true patience. Sophie will show us what she can do and who she will be. We will learn to care for whatever needs she has and love her unconditionally. It will get easier in time.
In the past I have prayed for my faith to be strengthened as I built a stronger relationship with God. I prayed for Him to use me for His purposes, to be able to do things for His glory. Today it hit me that my prayers have been answered. Not exactly in the way that I had in mind, but in the way that He has planned for me and others. I have been able to witness my faith to others during this time. I'm growing closer to Him each day in just the conversation that He and I have amidst my ups and downs. I truly feel that He is using me as a vessel and that one day I will look back and it will make more sense in retrospect.
If you're still reading this I am thankful. Each and every one of you are such a blessing in my life. We are not the only family going through a difficult time. People go through things that are much harder. So I need to stop feeling sorry for myself. Stop asking, "Why me?" and start looking toward the day that I will no longer have to go through the motions of day-to-day life and really feel like I'm living again.
"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." -Jeremiah 29:11
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