Yesterday was hard again. We are very slow at the office because it's the time of year families are preparing for graduation and other situations. The quiet in the office is deafening and I cannot help but think of Jude. I have had a few people questioning why I am still grieving which makes me turn my head and squint. The loss of a child is awful. You realize you will never see their face while you are alive again and it just punches you in the gut. So I left work a bit early and went home. Once home I checked the mail and saw a letter from our primary insurance carrier. It was listing all of Jude's benefits paid for March - Ninja 1. Then I saw a letter addressed to JUDE from Texas Health and Human Services which always makes me cringe! In the past it generally held a nursing denial which always pushed my stress level over the top. Looking back I still cannot believe how many times we went through denials and how complicated Jude's care was. Anyway this time it held information letting Jude know he was no longer covered for benefits because "He is not living.". Oh the stupidity of bureaucracy. I have no doubt there is probably some idiotic law in place that they have to notify the party. So thank you to the state for reminding me Jude is gone I appreciate all the service you provided him but you can kindly go away now. - Ninja 2
I was then able to relax a bit and then nurse Allan showed up on my door step. He was refreshing to see and he stayed several hours. The animals were SO excited to see him.
Allan says he is doing okay. He shed a few tears yesterday and said he has started working again but it's just not the same. I know how he feels. Then night nurse Cynthia called and told us Jude had blessed her because she was pregnant. We were very happy for her. I also talked or texted with nurse Charlotte and nurse Candice this week. Everyone is moving forward but I know they are all missing Jude and we miss them.
Today is a better day. I have moments when I lash out, moments when I cry, and moments when I smile. I am learning this is all normal. I remember feeling my moms loss when she died and I remember being incredibly depressed when my boyfriend died. However this is a new sadness. I also realize that if Jude had continued to fight and survive his teen years could have proven to be quite difficult for him and for us. My brain is processing everything but my heart still hurts.
Jude's book is complete. It's basically a culmination of diary entries on this blog since he was born combined with explanations. We hope to have it published and ready by the 9/24 Emily's Smile Box day where she features the pediatric stroke walk/run. I hope the book will touch many lives and help many families. I have my first meeting with the publisher on 5/16 so say a few prayers it all works out for the best. The thought of him touching even more people's hearts makes me smile.