One of the things that Mike and I keep discussing is trying to find our purpose in life again. When you have a medically fragile child your life completely revolves around their care. Even though I did make time for Emily's needs and projects we all still had to structure our days around Jude's needs. We are just now getting to the point where it's not strange to arrive home after 5pm since we don't relieve a nurse. We are just now not looking at a clock at 8:30pm to administer important medications. There are a lot more "just now" situations but I will stop and just say that it's a very odd feeling to not have a structured routine. When your life is strictly scheduled for so long and the person that you structured it around is gone you feel a bit lost. You catch yourself in deep thought wondering what your life's purpose is now.
On our way home yesterday Mike was again reflecting on this and I pointed out to him that he is still a very important part of Emily's life. He then pointed out that Emily has been educated and raised by us in a way that has made her a wonderful human being. He felt like there wasn't a lot more education to provide because it really rests on her shoulders now. I can understand how he feels and how a grieving parent feels a bit suspended in disbelief and searching for answers. I know the answers are out there and as time drops through the hourglass the answers will begin to emerge.
Another thing we find challenging is all the firsts including holidays, birthdays, and of course Jude's upcoming Angelversiary. Birthdays seem to have lost their luster and seem a bit futile now. Although I am still a dedicated blessed mother the thought of Mother's Day seems sad to me too. Gina invited me to a marathon on mother's day weekend but I nicely declined. I still just don't want to commit to anything right now. Her response was epic! She said, "I am sorry. I am not going to stop inviting you to do things though. My feelings never get hurt when you cannot make it. One day you will want to start doing things that are hard and when you do I will be there." GREAT response from someone who gets it, she even gets my crazy driving anxiety. Gina was at our house to see Jude at least once a week for years upon years. Sometimes she would come over just to sit with me while I watched TV and held Jude. She knew my routine and she knew I couldn't leave often. Yet she still took the time to come see him and come see me even if it was so very boring. She was over so often she knew how to position Jude, suction him, give him his meds, and what calmed him down. Because I was grieving so hard right after he passed I could do very little to help with anyone else's loss of Jude. The other night Gina said she went to see the movie Collateral Beauty by herself (if you don't know about the movie you might look up the premise). She text me to tell me she cried the entire way home and I got it. She was missing Jude and was touched by the story. Nurse Allan still texts Mike and I both, "Good Morning Glory" every Friday, Saturday, and Sunday. He would always say that to us with his bright beaming smile every weekend. He says he cries often and misses Jude and our family. We miss him, Charlotte, and Candice, his great nursing team. I found this quote which is fitting "The death of a child is like a stone cast into the stillness of a quiet pool; the concentric ripples of despair sweep out in all directions, affecting many, many people." John DeFrain
Jude affected many many people.