My heart hurts. We have had a down day today. The bleeding had picked up, so we took counter measures, and now slowed down, but in doing so we now have a little clot in the machine. Now we have another issue to worry about. It feels like we are going right back to where we were a week ago. We don't want to relive that awful terrible nightmare. I feel like our life is balancing on the point of a pencil. To correct one problem, we upset another, then it is a never ending cycle of upsets. Why can't we find that balance and maintain it? Good question....
We are feeling a little bit like bad parents right now. Our presence and talking to our princess is upsetting her. They have been taking her down in the different sedatives to find that place where she is comfortable yet somewhat awake. Well, tonight she was a bit agitated. She was moving a bunch, which will cause more bleeding, and we tried to talk to her, she became more agitated. We had to get out of the way. When we went back in, our nurse gave us the hammer down to not wake her up when they sedate her. It is so hard. We have been her parents for 8 years and we have to leave it to someone who has known her only for hours. It is terrible having to take a back seat. Here is our eight year old little girl, waking up because they have to stop giving her so much of the sedative. She is in a cold room, in pain, hearing strange voices, with her eyes taped shut. I'm sure she is feeling scared, vulnerable, alone.... and her parents are not able to talk to her, to reassure her, to hold her... THIS SUCKS!
I am here writing this, angry, embarrassed, helpless and my heart is breaking because I can't do a damn thing to help. These last 19 days are weighing on us. We are growing more and more frustrated with being so helpless. It is so hard not knowing what tomorrow will bring. Any minute could be her last. We just don't know. Are we going to improve? Get worse? It would be so nice to know. For now, all we can do is pray and hope for a miracle. Please keep us all in your prayers, especially our little Vittoria.
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James, You and Val are so amazing! We love you guys :)
ReplyDeleteToday I stopped by to see your beautiful daughter, I taught her primary class today, and the kids wanted to make her cards and tell her how much they love and miss her. I have never got the chance to talk to Vittoria until today, and when I went to her room and stood by her and talked to her I felt a spirit so strong, one like I have never felt before. I couldn't hold back the tears as I left, I cried all the way home and do everytime I think about what I experienced today. She has touched my life forever in just those few moments I was blessed to be with her. She has angels watching over her and prayers from so many people who love her. What wonderful parents you are, I admire the strength and the courage you have shown all of us. I will continue to keep your family in my prayers. Vittoria thank you for giving me a few moments today and letting me feel what an amazing little girl you are. We love you!
ReplyDeleteYou are amazing parents in a difficult situation doing all that you know to do and the best that you can with the tools that you have available to you at the present time ♥ Life is always in a balance, at this moment in time your family is experiencing just how fragile that balance can be. Many of us pray for you each and every moment, and our hearts wrench at the pain as we share but a small part of your journey. Vittoria is in good hands, I am sure there are always angels with her, she can not share what she is feeling at this time but she still loves you with all her heart ♥ Frustration is something you have earned and have the right to express, God be with you as you find the courage to take on yet another moment as it is given you ♥
ReplyDelete♥ Jeralyn ♥
I cannot imagine what a difficult nightmare this is for you. I wish there were something I could do to help it go away. I know it doesn't sound like much because you hear it all the time, but I am praying for you, along with the thousands of others around the world, and I know it makes a difference. I pray for your peace of heart and mind.
ReplyDeleteJames, I am so sorry that you are feeling so frustrated. I understand that feeling of frustration with the nurses at not letting you touch your child. Our daughter was born very premature and was on the ventilator and had several problems and her little life was so fragile we went weeks before we could hold her and many of the nurses would not let us touch her. And every time they made us leave for rounds or shift changes we would come back to another brain bleed or other life threatening problem and then be constantly told that we couldn't touch her and had to keep our voices down. That was the most helpless feeling there was, so I do understand where your coming from. Through that trial we had many ups and downs, and at times it felt like the wonderful miracles were matched with the pain of the scary lows. We felt angels protecting her and with each challenge came new strength. We gave her so many blessings, it was as she lived from blessing to blessing. Please know that my heart is with you guys and I am continually praying for her to pull through. I wish there was something I could do for you, I am not far from the hospital, let me know if you are craving anything or need any errands run and I would make it happen. Take care and remember how many people around the world are praying for her miracle to come! When you can't bear the pain of it all, get on your knees and let Heavenly Father take your pain for a moment because he will carry you through.
ReplyDeleteSincerely,
Kimberly Guymon Grimes
We love you guys and validate every emotion you are feeling. You have been in a nightmare for 3 weeks, you have done very well considering the circumstances. I agree with Kimberly, there are those times when all you can do is give your pain to our Father in prayer for a brief moment.
ReplyDeleteYou are just great parents, don't even think for a minute anything less
ReplyDeletelots of love