I had to go back to work today and honestly I would rather be home in my bubble. Life carries on but I am not quite ready to carry anything. Getting away to Sante Fe was an amazing thing for Mike and myself. As mentioned the nights are very difficult here at home and although we didn't escape our grief we found new ways to channel our emotions while in another setting. We saw many sacred holy places and we appreciated being so near to holy comfort. I never thought I was overly religious but in Jude's death I found I was much more faithful than I thought. I have always said that Jude is a blessing and I still maintain that information. As my sister mentioned at Jude's funeral when Jude was born we were all under the impression that God had answered our prayers and Jude would be okay. Yet God had other plans and we learned that Jude was "okay" in God's eyes and soon he was perfect in our eyes too. I have found a purpose in Jude's death in the fact he has reached so many people. With a purpose I believe our fragile spirits find away to heal.
I could elaborate on our trip but I choose to tell you about how we are doing because that seems to be the questions of choice. We are devastated and I am not sure how we will go on but per Mike we just choose to live. We choose to "be" and that's what counts. We choose to do what Jude would want us to and we march on. We do that with profound grief as we have had to pour out all his medications, question all that happened during his rapid decline, and realize we have to somehow find our way back to living a regular life. We all are taking this situation day by day. I caught Emily humming "Hey Jude" last night as she cleaned her room and it touched my heart.
For our family part of our grieving included distributing Jude's medical equipment to other amazing fighters that need what insurance cannot or would not give them. I also believe that providing his diapers, food, baby wipes and other small items to those in need will mean as much as the large items we will be donating. I appreciate everyone's amazing emails and messages and I do know that grief takes time. I have traveled the road of grief many times although never for the loss of a child. I guess I could ask why God has subjected me to so much tragedy but I choose to thank him for not experiencing more loss. Like I always tell Emily, "Everyone has a story it's what you do with yours that counts." I share my blog because I feel like I need to tell others that it's okay to grieve and to cry. It's okay to have your shoulder heave in pain as you question everything around you. I would like to share something I felt on the plane this weekend. I wrote it down when we flew above the clouds with a beautiful radiant sun shining brightly all around us.
As I looked out the tiny airplane window over the vast beautiful clouds I felt peace. I knew in my heart that Jude was indeed finally free. He would never struggle to breathe again and he would never have tubes attached to his body. So at that moment I vowed to no longer wish for one more minute with him because I knew that minute would just cause Jude more pain. He had suffered enough so I simply said, "Goodbye Ju Ju Bean! I love you with my whole heart." and with that I looked forward. Jude would want us to all look forward.
For those that could not be there Jude's service audio is attached. I think it is rather inspirational and if you feel compelled please listen. Note it's about 2 minutes in our so before the service starts. When you hear Allen speak that was one of amazing Jude's nurses. Just copy and paste. http://chirb.it/q9vn7g One thing you cannot hear is the entire congregation singing "Hey Jude" at the top of their lungs. It's why the person singing gets choked up. It was so moving.