I have to say that I felt pretty beat up after our appointment yesterday. I feel like we have no plan to manage our daughter's pain. I feel like we are no closer to making her comfortable than we were before. I also feel like our one hope (having surgery to remove the tube) had been taken away. We were unsure if this was the cause, but it seemed reasonable and at least it was something. Instead we were given a "miracle" medicine to give her and hope that this will work. All the medicine has done is make her very sleepy (how are you suppose to eat, much less gain weight when you are sleeping all of the time) and not want to eat. Yes, I need to give it more than 24 hours but to say that I am frustrated, is a bit of a understatement.
I feel beat up and worn. I feel like there are probably not many other people who can relate to this feeling. I look at their children and they are not battling what we are, they don't understand, how could they. I feel like this just will not stop. When can we just have a day to enjoy this sweet girl and relish in what God has given us? When will the constant problems stop? When will I have to stop fighting for my girl? Struggles. Struggles that never seem to end. Struggles that seem impossible. Struggles that are bigger than me.
So what do you do when your struggles feel more than you can handle? I have been praying, but I still don't feel like there is anyone there. I know that this journey of faith is difficult and I know that I am NEVER alone. But some days just feel so awful. I feel like I have been so beaten up. I feel like I have been so battered. When will it stop?
As I have been praying and asking God to show me, that thing that I needed all along was right in front of me. It actually is at the heart of the struggle. Her name is Lydia. I was sitting on the floor last night just feeling so low, wondering why this was all happening. Not really feeling like any of the pieces of the puzzle were connecting. I picked her up and she smiled back at me. My heart instantly melted. Sometimes God gives us the most strength in the most unexpected place.
During all of these struggles I saw through that smile that these are her struggles. These are real things that are affecting her, shaping her, creating her. And in doing so she is teaching others, she is affecting others, she is a testimony. I realized that she is battling these struggles with grace and courage. She has been fighting and smiling through every struggle. This is creating the person that she will be.
I am not sure if I can really put into words that moment, the smile, the answered prayer, the renewal of strength, the "light-bulb" moment, the duh moment. I realized that in a lot of this struggle the I has been before the she. I do put her best interests in mind. However, when the struggle seems to big, am I putting myself in her shoes? It is a struggle to get her to eat sometimes, but what is happening with her? Does it hurt? What is happening? To watch her cry out in pain is so hard. To not be able to comfort her is so hard, but what is going on with her? She obviously is hurting.
It has helped me to think of her, to really think of her. As I am fighting for what I think is best for her, I am trying to take myself out of it and really think about her. I am trying to think about how she handles these struggles. She is awesome. She smiles and she makes others smile. She betters those around her. She has a way of bringing everyone together.
Maybe it was a little lesson in gratitude. To be thankful for the situation, not to find thanks in the situation. To be able to praise God and have a TRUE thankful heart in the midst of a storm. Maybe it is growing in love even more, to be able to purely think of someone else and not just me. I loved that moment, it was amazing.
To say that this journey has been a struggle may be an understatement. However, to say that I have not learned, I have not become better is also an understatement. I can't tell you how blessed I feel to be able to take care of her, to be able to learn from her, and to be able to love her. Most days I want to literally bite her in love (seems so crazy but my love runs so deep). My love for her is so great. When she looks me in the eye, I can't help but just stand in amazement. She continues to fight and learn, she is determined. Despite all of her pain that she is going through she is still developing and wowing other people. She is not letting any of that small stuff (and the large stuff for that matter) get in her way. She continues to be her no matter what the situation is. I have a lot of learning left to do!
I can't explain how wonderful these struggles are when I look her in the eye and see this journey. As much as I want to say it sucks and it hurts and I am exhausted (all things that I am) when I see that cause, when God has revealed that blessing in disguise, it is all worth it. We never really know what we have until we take ourselves out of the equation, we find a pure heart of love and gratitude. While there are things in this life that I would love (no stress of money, a child who would not have to suffer from the pain, this that and the other things) this is what God has blessed me with. God knows what I need better than what I know I need for myself. That is so awesome. I need to learn to be content in this situation, in this moment.
None of us are promised our next breath, so are we going to honor God and appreciate where we are? Lydia is teaching me that. So as much as I want to complain, I need to give thanks and rejoice. As hard as the last couple of weeks have been, as tired as I am, I am here, I have a loving God, an amazing family, health, and the promise of eternity. All of the rest of the stuff is trivial. It really does not matter.
I hope this makes sense. It is hard for me to put into words these moments that God gives me. However, they are so important and I want to make sure I try to capture them for future reference.
My struggles, the are God's, He has been there, He is with me, and He won't leave me. What do I have to worry about?