Many have asked how Brennan and I are doing with all of this. I guess you could say that our emotions vary depending on the hour.
Some moments we feel strong and hopeful that God will help our Victoria be victorious. Other moments we start to fear the worst (which is also the medically proven outcome) instead of trusting the Lord. Then we refocus as best as we can.
Today has been a little more emotional for me at times for whatever reason. I look into her beautiful eyes and I just cannot imagine not being able to look into them for the rest of my life. I want to watch her grow and learn, to make friends and learn about Jesus. I want her to experience the simple and extravagant joys of life. I want her to travel the world with us and explore.
Brennan and I were talking about her today through texts and both had the same thoughts today: we know that God has some purpose for all of this, and while we desperately pray that He wants to do a miracle in her life that would impact the world and also save her life, if that isn’t His plan, we pray that somehow she can be the catalyst for a breakthrough in the research for this disease – one that would create a cure and save thousands of babies/children. Obviously, we want to keep her here with us, no question about that 😄 and we are doing everything we can to make that happen.
We know that her life has a purpose, and we know that someday we will understand. But, for now, we continue to trust the Lord, minute by minute, and pray that He will heal and restore her.
On a lighter note, we are almost to Pittsburgh on the train. Tori has slept well most of the trip thus far, and this is a really great way to travel.
Tomorrow she will have an MRI and many other tests. Thursday is a day to explore, and they are giving us passes to two museums. Friday will be more meetings and appointments. We are looking forward to meeting Dr. Escolar and her team and seeing what options there might be to ease her pain and perhaps stop the progression of the disease.
A friend told us that she dreamt about Tori at the doctor last night, and in the dream Tori smiled. Praying that this is the beginning of our miracle and that our baby will smile again.