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In the weeks and months following Joseph’s time on earth, I was very aware of and closely attuned to the “other side of the veil.” I felt his vibrating presence around and inside my body all the time, and could very easily communicate with him through meditating. Forgive me for simply blurting out that I had (and still have) the ability to “talk” to his spirit because, I know, it isn’t the most widely accepted norm or truth in our society. At the risk of appearing to have completely lost my wits, I confidently share that, yes, I can transcend the physical realm and access what cannot be seen or heard with the physical body. I believe the experience of Joe's birth and his death shifted my spiritual awareness instantly and permanently, bestowing me with the gift of experiencing the world on another level. Since the beginning, this connection to Joe has been intensely powerful, overwhelmingly clear, and constantly accessible. Over time, the intensity of it all has faded, but is just as accessible. I don't have to be sitting in lotus pose with my eyes closed reciting a mantra to be able to receive his messages, they just come freely and our “conversations” flow steadily all day everyday. Thanks to Joe, I’ve grown comfortable being in the company of my own solitude. Thanks to Joe I’ve witnessed truly miraculous events that have convinced me that nothing happens by coincidence.

In the beginning of this journey I was devastatingly sensitive to sensory stimuli of every sort. Music, pictures, smells, tv shows, foods, places, people… All things were potential triggers; all things were unsafe. The next emotional unraveling lie perpetually just below the surface, and I was at the ruthless mercy of all five of my senses doing their damn job. My hyper-sensitivity to smelling or watching or listening to anything led me to amend my driving habits, as well as practically every aspect of my daily routine. I started listening to podcasts instead of music and didn’t watch anything on television that I hadn’t already seen. I threw out all my personal care products and swiftly replaced anything I put on my body with a new scent or brand. I removed everything from my home that didn't bring me joy (including clothes, furniture, kitchen utensils, documents, books and any other general kind of stuff), and worked to turn uncontrollable situations into controllable ones as much as humanly possible. This effort didn't always work out, but that’s a story for another time.

For the first several days after we came home from the hospital, Chris and I went everywhere and did everything together. His workplace gracefully and humanely allowed us to decide together how much time we needed before he returned to work. He returned to work part time after a couple weeks, and since I was on summer break I had infinite free time that was altogether petrifying. I had to be intentional about every step I took during those first several days. Although he only worked a few hours at a time at first, I scheduled every minute of my “alone time” with friends, family and other engagements, and used an absurd amount of emojis in my iCal to make things light and interesting. Each day, I drove Chris to work, went about my carefully structured day, and then picked him up from work a few hours later. I dared not listen to any music and only paid attention to whatever was going on right in front of me. I carried with me, at all times, a backpack full of items that would soothe me if ever I began to feel overwhelmed. What I casually called my “safety bag” contained Joe-related items that I needed to quite literally feel a sense of security. Inside was every printed portrait of Joe that my dear friend, Juli made of him while he was in the NICU, Joe’s NICU binder containing his x-ray images, a coloring book and colored pencils, the light blue crochet thread that we used to make “Joe bracelets” for anyone who was interested, Joe’s baby book from Mushybooks, and two books (which I never opened, but still, they made me feel safe): Being Peace by Thich Nhat Hanh and The Path of Practice by Maya Tiwari. This bag was my security blanket while I was out in the world and it brought me comfort just feeling it pressed against my back. Those of you who saw me during those days know the safety bag and remember it fondly, I’m sure.

Our friend Katie Hoss took these photos of us on a Sunday Joe's Day in November, 2016

Over time, Chris returned to his normal work hours and I was able to spend time by myself without other distractions (still with the safety bag nearby). I experimented with listening to the radio and watching some new episodes of our favorite shows, and eventually could handle music and familiar programs again without being triggered and becoming overwhelmed. I have become very adept at filtering all input and allowing positive, healing messages to resonate while letting go of everything else that doesn't serve me as I am now. One night I was home while Chris was out, and was feeling courageous and cavalier - I boldly searched for a movie on Netflix. Uninspired by every title in every genre, I came across The Little Prince. I had not heard of this movie before, but the cast of voices was wonderful and the fact that it was animated gave my selection an added safety bonus.

I learned this movie was based on the French book from the 1940s, but I otherwise knew nothing about it. The storyline and score were so sweet, I fell in love with it instantly. As I watched, I kept hearing lines and catching themes that brought up so many Joe thoughts and memories. It has a highly spiritual vibe and I was definitely feeling its message. The Little Prince knew so many truths that I also knew, like this movie was made for people who had been through great losses. It led me directly into the face of my grief and instead of making me want to retreat, I somehow felt protected and bound with all those who have suffered as I have. The wisdom of this sweet movie was humbling and comforting, and I was amazed at the fact that I happened to come across it in that moment. Again, no coincidences.

“It is only with the heart that one can see rightly; what is essential is invisible to the eye.”

How deeply I know this truth.

The moment I met Joseph at Children’s Hospital, I experienced the most essential truth in the universe: love. Not the kind of love you feel when you meet the person who completes you or the love you have for your pets or even your children. I am talking about the love that began the entire universe. The love from whence we came and to which we all will eventually return. I’ve sensed the simple intention of the driving force of all creation: not for us to learn this truth, but to remember it. We come into the world knowing this truth, but as we grow up we forget, and our task in each lifetime is to somehow remember. The lessons we learn in the school of life are actually opportunities in disguise to become reacquainted with the love that created us. We strive, through our mistakes and accidents and tragedies to remember how profoundly and unconditionally loved we are. If we come to understand this truth, it is (for lack of better words) completely life changing.

Love was the only thing present in the room with Chris, Joe and me. It allowed me to have the strength necessary to be his mother during those seven days and to continue being his mother each and every day since. To be human is to be constantly aware of all the things that limit us. Within my human weaknesses alone, I could never have shown up the way I did, or the way I still do. But with love, I am more than my physical body, I am more than my vacillating emotions, I am more than my over-active mind. With love, I am the universe. And because I am the universe, I can do anything.

The Little Prince reminds me of the love I learned from Joe. Maybe its message speaks to me simply because of what I went through to have an understanding of it, and the story involves a little boy trying to remind an adult about the essential truth that we easily forget. Regardless, the symbolism of it brought tears to my eyes, giving me a very special way to think of my Joey and I am grateful for anything that gives me that opportunity.

Whether or not you’ve read the book, I recommend watching the movie. It’s funny, sweet, and has a wonderful message. (Off topic, I also bought the soundtrack and it is the best).

Joe on,



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