We say so long. A thin veil is all that separates us…

graveMy alarm went off at 3am. Time for Sadhana. Now in the tradition I have been taught, part of this process is a cold shower before starting your practice. I fricking HATE cold showers. Yet this morning, nothing seemed impossible, nothing was to be hated, nothing was to be an issue. I got up, I took my cold shower, I dried off and dressed myself. (I still can’t tell you what I wore that day…I have no idea…though at the time I was trying to embed it in my memory) 

The night before Sean told me I needed to get a car for Bob at 3 something. This was because Sean, Bob, Keenaan and Tahan were to meet Jonathan to drive to the cemetery to dig Mikaela’s grave. At first, I was frustrated because I knew I was going to be in meditation…I also knew how vital it was to take care of each other so while chanting, I got the Lyft, and went with the flow. There were so many gifts that started from this moment. I had a white sheet over my head because it was the only white I had for a head covering (the Kundalini yogi’s wear white to amplify their energy in their connection with spirit). I can’t imagine the site I was, and I didn’t care. I had to pull on all of my practices, all of the teachings that were part of my journey until this moment, I had to pray in this way to get through THIS day.

Wah Yantee…Kay Yantee….I kept chanting. Bob walked in and somehow things felt even more perfect. I finished one mantra…he said, that was beautiful, I said…wait there is more. I kept going. His presence brought serenity.

As is my life, I f’ed up one more thing…that was totally perfect in hindsight. Sadhana begins with a chant called Long Ek Ong Kaar’s.  I forgot. They always ground and help us to settle into the rest of the process. I remembered at the end. No mistake. I explained a bit more about this and then, in some beautiful perfection, we continued.  At 4:30’ish this beloved boy (the man who captured my daughter’s heart completely) and I…were together…moving through this last meditation…this grounding mantra. At 4:48 we finished.

Cherry and Aziza were there and waiting. Those women, angels. No other words to describe them. With the gentleness and love that flows from one mothers’ heart to another, they quietly were present and ready for the next step. They moved Mikaela to one side of the bed, so I could lay down next to her. I put on Akaal by Ajeet Kaur and ensured it was on repeat. Akaal is a chant that the Sikh’s recite when a person is in transition to help the soul journey smoothly to the other side. This version is beautifully powerful in its words and perfect.

We had been told by the doctor that it was hard to say how long it would take for her heart to stop once we took her off the respirator. She estimated 10-20 min but no way to know exactly.

As an aside, it is interesting to note as I reflect back on that time, Sean and Bob were meant to be in a car heading towards Ekone. It was just going to be Mikaela and I as she left this earth. I knew I could do it because it has just been my mother and I when she died. I’m deeply grateful it wasn’t. All was in divine order that morning…better than anything we could have planned.

The respiratory therapist (a kind soul who works at Children’s Hospital a lot) came into the room and all 3 waited for us to get situated. Bob pulled up a chair and sat next to her bed holding her hand. I carefully laid down in her bed and put my arms around her. One hand on her heart, one around her head and getting as close to her as I could so she could feel my love to know she would be okay. Then Cherry and Aziza stood next to the bed behind me. I felt like they were holding me up, giving me the strength to take the next step. Knowing in their hearts what was needed. We were ready….and yet NOT ready at all for what was coming. The kind RT man looked at me, and whispered “are you ready?” I looked at him and I said “no, but she is so it is time.” He turned off the ventilator and took the connection off from her trach. I can never describe in words what those next 15-20ish minutes were like. I’ll share what I can and know that if you ever have the opportunity to sit with a loved one as they transition from this earth, it is a deeply powerful and moving experience. It is also hard as fuck and in this case,  I knew I had to help her let go and ensure her spirit moved smoothly to her next place. So this is how it went…

I could feel her heart racing as her body became deprived of oxygen. I kept talking to her, letting her know it was okay and it was her time to leave her body. Her grandmother would be there to catch her and help her on the other side. She didn’t need to be scared or worry about leaving us. It was all going to be okay. We would miss her terribly and we knew that this is how it needed to be. More times than I can remember, I reminded her of how loved she is and how that love would hold us all. Somewhere in this part of the journey I felt someone touch my foot. I looked up and it was Sean. He had walked in shortly after we had removed the ventilator. Then I knew things could and would move better. Now she was held on all sides by the people in the world her loved her the most.

Keenaan was with us in spirit and we honored that this part of the journey was not one he could make in person. He sat downstairs and waited with Jonathan which was a grace and gift.

At a single point I couldn’t feel her heart beating anymore and thought she was gone, the wrenching on my heart felt like its own death. I held my child sobbing and then there was this stillness and peace. I looked at the monitor to see that her heart was still beating just slower and quieter. This is how we proceeded through the rest of her transition. Holding her, encouraging her, reassuring her, then being quiet and present to her so she could leave this earthly place. The music continued to play and this energy was held to do all we could to help her in this journey only she could make.

Then it was complete. Her dying from this place, her body no longer held life force energy. My child was dead. We all just held her. Devastated.

We held each other, we cried, we looked at her and each other still not fully able to fathom this new reality. Our world without our sweet Mikaela.

Then it was time, the boys needed to get on the road and head south. They were in charge of preparing the space for her body’s final resting place. To return her to the mother. I was in charge of her body and all that went along with preparing her and getting her to the final resting place. The masculine and the feminine working in parallel, working in the sacred energy of grief and deep loss, to honor her and each other in the ways that we could.

As I write this, it is brought to my consciousness that I held the feminine motion and Jonathan (my spiritual partner in crime) was guiding the masculine motion. With our individual spirit work, we have individually always worked primarily with the same sex in doing our ceremony work. I suppose it is fitting in this, the greatest ceremony I would ever be part of, that I was partnered with a dear friend to bring our individual gifts/paths together along with the group of us who held all the moving parts that got us to the end of this day.

After the boys left, I sat with her body for a short while and then started to think of all the tasks that needed to executed based on our planning from the day before. I finished packing up the hospital room. Aziza got me a large cart to load up all our final items. I asked Cherry if the doctor could remove her trach and any other ‘lines’ since this wouldn’t be done during the autopsy. When all the ‘work’ of things was complete, it was just her and I, in her hospital room.

Our friend Chuck was going to come and get me from the hospital at 7:30. That was the time the transport was to move her back to the morgue at the First Hill campus for the brain autopsy. I was assured they were on top of this last piece of business, so she would be at the morgue in time for her 9am appointment. Sort of funny that a dead girl still had one last appointment before her body’s journey was done. By the time Chuck arrived, if I am totally honest, I felt like I needed to get out of that room. Not because I wanted to be separate from my child’s body, mostly because the excruciating nature of this new reality felt like more than I could hold. After Chuck briefly went in to say goodbye to her, we left.

In my plans, that meant that by 11am I would be with her body again at the Islamic Center where they were to perform the washing and shrouding. 3.5 hours was all the time we were to be separated. I didn’t want her body sitting in a morgue and left to be around people who didn’t know her let alone love her. Well they say the best laid plans. More on this soon.

We loaded up Chuck’s car, I got in and as we drove off, I fell apart. This was only the 2nd time I had left the hospital since arriving. I wasn’t supposed to leave without her. I was supposed to live in that hospital in her room until she woke up and started improving. I was determined during her illness that I would not leave her side. It wasn’t an option because it was my belief that the sheer magnitude of my love for her would support her healing. This and so much more just hit me so I kept crying and then realized there was still much to do so I better hold it together.

Chuck took me to my father’s hotel down the road. My father, uncle and sister were finishing breakfast and then we sat in the lobby. Cherie and Kim were to meet us here with their respective tasks in place. Kim was driver of my relatives and was to stay with us all day as we moved from place to place. Cherie was bringing my car with flowers and greens to help decorate the back to transport her. While I waited for them, I received a phone call regarding donation of her brain for science. It was so out of the blue that I was a bit terser than I should have been and confused as to what was happening. The gift was this, a friend formerly from Microsoft, heads up an organization that handles cornea transplants globally. She learned that we couldn’t donate Mikaela’s organs and knew that we wanted to honor Mikaela’s wishes around giving ‘some part of her’ to science for study. She was reaching out, via one of her people, to give us the info around donating Mikaela’s brain to science. Not only were we able to donate her brain but it turns out this neuro-pathologist is an amazing person and did the autopsy himself. I didn’t understand at the time but ultimately this turned into a gift for which I will always be deeply grateful.

After this phone call Cherie arrives with Falcor (that is the name of the 4 Runner and super fitting since Mikaela loved the Never Ending Story) which was packed to the max with amazing greenery and flower. In the entrance of the Silver Cloud hotel in Capitol Hill (literally right in front of the doorway under the overhang…because it was raining) we unloaded all the goodness and I began to make her chariot beautiful for this final ride. Cedar, ferns, daffodils, tulips and other beautiful flowers and greens. One could only imagine what the front desk people must have thought watching this show unfold in front of them. Buckets filled with greens and Cherie and I laying down plastic, then white sheets, then her handing me the requested items and allowing my dance of creation to unfold. Every bit of who I am and my love for her, breathing into the life the vision of my heart.

With the back of the 4Runner sorted, I shoved the remaining odds and ends into the car that we needed and returned to the lobby. By now she should have been at her appointment and things should have been progressing. Thanks to Cherie for ensuring we checked in to see how that was moving. She even offered to go to the hospital to ensure they were sorted and on time. She had done so much for us since the time Mikaela went into the hospital, I assured her it would be okay and she didn’t need to go. Well, I was super wrong and she was super right to offer and gently encourage me to check in. I called the head nurse of all ICU at Swedish (yeah because I had her number as my point of contact for the day for all things regarding Mikaela until she left the hospital). Turns out transport was late picking Mikaela up and you guessed it…she missed her appointment. Ugh. We were assured that they would be starting shortly. At this juncture it dawned on me that I should have just stayed with her body until they came to move her. I also should have gone to the First Hill campus and checked in to ensure this was all happening in a timely manner. I didn’t do that either.

Keeping in mind at this juncture, we are on a timeline. I was insistent that we bury her within 24 hours of her dying. Our goal was to have her to the cemetery and be burying her by sundown. With a 3.5 hour drive from the Eastside it was vital that we be on the road by a certain time to make this happen. Not to mention the women who were waiting at the mosque to perform the Ghusl Mayyit (ceremonial washing of the body) and shrouding of her body. Not to mention the small group of people traveling that same distance from Seattle. Lots of moving parts that needed to synchronize to make this all happen.

Kim arrived, he took Cherie back to the ferry as we were trying to sort what was going on. Upon his return, I decided we should head to Redmond and wait at the Islamic Center for the transport to arrive there with her. My father and I got in my car, Kim with my sister and uncle and off we went. From Capitol Hill across the 520 and to Redmond. As I was driving on the 520 I realized me driving probably was not an awesome idea due to lack of sleep and shock. As that realization hit, an Eagle flew overhead. The eagle bolstered me and reminded me of the strength and endurance required for new beginnings. Then I immediately drove to one of my favorite coffee places to get a strong americano. As I pulled into the parking lot, I received a call from the funeral home transport people. Mikaela’s body wasn’t ready and there was no ETA. UGH!! For those who know me…let’s reflect on the fact that it is now 11am and I have not had a single sip of coffee since I woke up. My daughter is dead. I’m on a timeline to complete all tasks so that we can bury her. There are women waiting at the mosque. There are a group of people waiting on final timing so that they can meet up and catch carpools from a park n ride in Issaquah. Jonathan is sending updates on their progress. My project manager hat is in full processing despite no coffee and little sleep. So now what?!!?

I call the head of ICU nursing again. Asking for an update. I get my coffee, we get to the Islamic center and find the lovely women who are waiting for us and Mikaela. They insist on getting us beverages and food. They will not take no for an answer and shove (kindly) food in front of my sister, father, uncle and I. Somewhere earlier in this writing I think I mentioned that Jonathan and I agreed to fast from the time we learned of her death until we buried her. It was easy for me since the last thing I felt like doing was eating. I politely took a bite then slowly moved the sandwich toward my father. 😊 He had to take this one for the team as these were his people and I wanted to be respectful but only had so much left in me to hold it together. Or so I thought. My phone rings, it is my Swedish contact again. She explains there has been some mix up and challenges since the appointment was missed and they are sorting it out now but cannot tell me when her body will be ready. It is now almost 12. I look at my sister, who is a trauma surgeon, and say we need to go back to the hospital. We left my father and uncle at the Islamic center with the lovely Muslim ladies. I called Kim to come and get us, realizing I definitely shouldn’t drive, and away we went, back down to where we had just come from. I’m now freaking out and upset. Yasmin to the rescue, she starts looking up phone numbers and calling people from the back seat. Then she is in full doctor mode and telling people (I have no idea who these people were) that their answers were unacceptable and explaining exactly what she needed and expected would be done asap. We still didn’t know if they had started the autopsy or what the status was. Kim and I looked at each other with a bit of awe and were deeply impressed. We also decided in that moment, we did not want to get on the wrong side of Yasmin in a situation like that. She kicked ass and thank god she did. In her epic phone escapade, she found THE person who handled coordination of transport from the morgue and this was also one of 10 people who had been on an email thread the day before as the doctors and nurses helped us coordinate transportation, etc. for Mikaela based on original wish to transport her ourselves. After driving all over First Hill, we finally found the main entrance. Yasmin and I jumped out and went in search of the morgue. We were directed down a hallway where we literally ran into the woman Yasmin had just been speaking with. She was kind and invited us into her office, reassured us that she would help get us sorted. She called the morgue, no answer. She was able to get the head of nursing in that area to go down and check on status. This woman was also so very dear. She came in, hugged us, expressed her condolences and let us know they were just closing up and Mikaela was ready for transport. I called the gal who was waiting and she, after what seemed like forever, arrived at the main office to get the paperwork and pick up Mikaela. I think it was almost 2pm. The stress was easing a tiny bit but I knew we were way off schedule and based on timing, there was little to no way we would get to Ekone by sunset. Ugh the best laid plans.

In all this, all I kept worrying about was that she wasn’t with us. That she had stayed in the morgue too long and I couldn’t have her separated from us for so long. This may sound odd to most, but it was my intention to care for her body as much as we could on our own as a family and with extended support. This was my child, she grew in my body and I gave birth to her. There was no way I was going to allow strangers to take care of her as I had to return her body to the earth.

Kim picked us up, we headed back to the Islamic center. It seemed like forever until the young woman arrived with her body. By then we were all ready inside the washing room. As the car drove up, I felt like it had been eternity since I left her at 7:30 and now she was in a bag, she was cold and dead and all of the reality sunk in again at a whole new level. The ladies were lovely and asked if we wanted to help. I couldn’t because it seemed beyond my ability to wash her again without any sign of life in her. This is when the craziness of our day set in again and Yasmin, once again rose to the occasion with the fierceness that was needed in that time.

When they sewed up Mikaela’s head, they didn’t do a great job so her head was bleeding. This wasn’t going to work since they were wrapping her in a white shroud. It took me a bit of time to understand what was happening. The ladies trying to wash the blood away, trying to perform the ceremony and prayer of washing her body. Yasmin and I stand and watch and then all of a sudden the organized chaos has gotten to be too much for her. She sees my stress, she knows we are on a timeline and she steps in to help. She holds Mikaela’s head and checks out what the issue is. She needs something to sew the wound closed in a better way. They have nothing. Then the comedy of the situation starts. What are we going to put on her wound so it doesn’t bleed everywhere? I won’t step into those details but just use your imagination about items that are highly absorbent for other bodily purposes. Oh Mikaela, you knew I needed a comedic pause in this horrible situation. Thank you for giving us that. If anyone had seen us at that point, the vacillation between tears and laughter…I’m sure crazy would have been their word to describe me. Again, thank god for Yasmin who took control and helped get the organized chaos to be just organized without the chaos piece.

As this is going on, I’m also trying to text with Seraphina who was coordinating folks. Most people had already headed to Ekone. Jonathan had sent pictures of the space and their progress. All that was left was the small group waiting to meet me and my crew to head out. My father was to be gathering the people at the center to read the funeral prayer. This prayer is to support the soul in its transition from this earth (sound familiar). Muslims believe that the more people who read this prayer for the dead, the better it is for the transitioning soul.

So now my sweet girl is wrapped in white cloth. She is ready for transport. They have her wrapped from head to toe and her face is also covered. My father and uncle come in to join us. My father asks to see her face one last time. He says goodbye. I find these small moments of quiet throughout the day and this one was so beautiful and yet painful. A grandfather outliving his grandchild. Blessings on my father for his fortitude to stand with me in this journey.

Now I’m getting super anxious again because this prayer needs to be said and we need to get on the damn road. Nobody is gathered. People are meandering about. She is wheeled into this gymnasium space from the washing room and I’m telling my dad, we need to hurry and do this NOW. The imam (at least I think he was one) starts to wander off to find more people, remember the more people the better the journey, the more blessed the soul. I basically spurt out there is no time and we need to do this now. He looks at me in a bit of shock, returns to standing in front of her and leads the prayer. Yasmin and I stand behind everyone and try our best to pray too. Then the task master goes into action and I’m okay…let’s go. As we are wheeling her body out to the car, the Muslim ladies start to chase me down. The eldest of them tells me to google a mosque on the way and stop, make a donation and have them say this prayer for her again. More people. It is important. I nod politely and thank them again…then keep moving. The young woman who transported her body waited so we could use her gurney to get Mikaela into the car. She was wonderful and I only wish I could find her again to thank her and give her the promised tip I had talked to her about for waiting.

Now we are outside, Kim, this young woman and I. We open up the back of the 4 Runner and proceed to slide her into the car. Kim at the side door trying to slide her up toward the top and us moving her from the bottom. Once we got her in, Kim and I very quickly realized that ‘straight up and down’ she didn’t ‘fit’ and her feet were hanging out the end of the car. As quickly as we noticed, he grabbed her from the top and I from the feet and moved her at a diagonal. Looked at each other and breathed a sigh of relief. She literally barely fit. Her feet were pushed up by the ‘trunk door’ but she fit. Thank goodness.

The lovely women from the Islamic Center also made us food to take with us on the trip. It was the grace and kindness that they showed us that entire day that will stay with me for the rest of my days. They were amazing and generous and thoughtful and loving. They were mothers and though they couldn’t imagine my situation, they honored me from one mother’s heart to another. I hugged them, said thank you and goodbye. Yasmin and I hopped in my car, Kim with the elders behind us and off we went to Issaquah.

Traffic sucked. Everything felt like it was taking an eternity. It was after 4pm and now I knew there was no way we would get there before the sunset. I had told the Issaquah contingent to leave and we would just drive straight there but they insisted on waiting as their wisdom was greater than mine at that stage. I was frazzled and was stuck in my planned schedule and hadn’t yet remembered that sometimes the plan you make is not the ultimate plan that needs to be executed. That sometimes these things are all out of our hands and going with the flow of the river is all we can do. We went to Issaquah, met the rest of the small group waiting for us…Seraphina led the group, Leslie was to drive with Mikaela and I, Yasmin back with Kim, Loren, Ananda and Seraphina in another car. I insisted on driving the first part of the journey….still thinking I could get there close to our planned time. 

We were off and over the Snoqualmie pass we went, her physical self on its final journey in this world. Kim kept up with my speeding which went on at that same pace for almost 2 hours. We lost the other car. Driving has always had a cathartic effect on me and in this case, I think I needed it because the reality of what I was doing hadn’t fully hit me. The weight of this journey was more than I could carry so my body and mind did its own thing to ensure I could make it. I’ll forever been in deepest gratitude to Leslie. She had food, she had beverages, she was present and grounded, and she knew how to hold the space we were in when I couldn’t do it. She held Mikaela and I in this trip. She had been coordinating since the day before to help ensure we could fulfill the wish I had for ceremony during the burial. Leslie and Sandy are my teachers and my sisters. They are part of my tribe and have been for many years. They taught me how to fire tend and they helped me learn and lean into the ceremony of sweat lodge amongst many other things. Through the years their gifts of support, listening, holding, caring and simply being present have been a grace that they give freely to others in their world. In this hardest moment, in this need to embody the sacred in all ways, these two women began to create the container for this final ceremony while I moved and stressed and floated and pushed through the worldly stuff which got us to this juncture. Driving my white 4 Runner, with my child’s body settled gently on the bed of earthly beauty I had made for her in the back, Leslie my co-pilot (with Sandy a phones reach away) and guide into the most deeply sacred ceremony I will ever be part of.

About 2 hours in it was time to stop for a quick bio break. At the Starbucks we all stretched our legs and had a moment to connect. Kim, as he ever is, was upbeat and ribbing me about my speed. He was also sharing funny stories about being in the car with my uncle. I swear Kim is a saint, a 4 hour drive in the car with my family is not for the faint of heart. LOL Leslie was sorting some items with Sandy. I just stood outside the back of my car, glancing over at her. Wrapped in white, surrounded by beauty. Had to keep moving so we did. Leslie took over driving and our journey continued.

It was growing dark. We were trying to sort arrival times and where to meet and what was needed. Jonathan still our planner and manager at ground zero knew where Seraphina and their group was and had given us the scoop on everyone who had already arrived. He had sorted everything for the late burial with the staff onsite. He reassured me that it would all be good and perfect. As Leslie turned off the main highway and we began our last leg of the drive on the back roads heading to Ekone, all of a sudden it got harder to breath and I started to not feel well. That pit in your stomach that is hard to explain, the scariest, hardest, most dreaded thing is approaching, and you know you cannot do anything to stop it. The feeling isn’t something you can escape or wish away. It isn’t going to go away. It is only going to grow. Leslie held my hand and I tried to keep taking long, deep breaths. In that time, I think I went into another place, that place of the sacred, that place where all ‘thinking’ ceases and all that is left is a motion from your core, your gut, your spirit. I knew as we arrived, I couldn’t see people or talk to them. I couldn’t ‘act’ like what others may be comfortable with. I couldn’t do the meet and greet. I couldn’t do anything but be where I was, the way that I was, with my child. The only other thing I wanted was to see my son. The other heart outside of my body. Poor soul had been in the same clothes for 3 days. (We did bring him clothes that day but somehow that was missed in the days leading up to the burial…ugh the things that go sideways are too numerous to mention when life take a giant sledgehammer to your life)

Jonathan met us as we arrived. I explained that I couldn’t see anyone and I can’t remember much else from that conversation. I remember Sean coming out. Getting an update on the road/drive up the hill to the cemetery entrance. What awaited there for the rest of the ceremony and some other misc. logistics. Many people had already started to walk up to the burial site because the only cars that could get up the road were 4 wheel drive. It was very cold that night. I had only reached out to a very small group of people to join us that evening. This time was for her and for our smaller family. It was not a ‘funeral’ like most are used to. It wasn’t meant to be. It was hers and mine and her fathers, her brothers and Bob’s. It was meant to be a ceremony of the most sacred because we were doing the unimaginable.

It was agreed that Kim would drive my family and a few others, Jonathan would bring my teachers up the hill and Sean would join Mikaela and I. I put on Akaal and slowly began to drive. Mindfully, aware of every bump and puddle in the road. Focused entirely on the fact that this was it, the end. The end of my walk with her on this earth. This child who grew in my womb, whose big brown eyes filled the hole in my heart left by my mothers death, this child who took me to the brink of sanity and delighted me like no other human I have ever known. How were we here? How did this happen? Why, dear God, was I burying my baby girl. 22 years old and full of life with such an amazingly bright future ahead. She had far exceeded every wish I had for her in her short life. Why was I driving up this road, with her body in the back of my car getting ready to bury her?

We slipped and slid around on the very wet road and finally made it to the entrance of the cemetery. As we drove up, I saw everyone standing to the right, waiting and witnessing our arrival. It was dark. The only lights were their flashlights and headlights from our cars. Then I just sat there. Poor Sean was almost manic from lack of sleep and the deep grief. He had to keep moving and all I could do was not move.

I waited for the group to keep walking. The amazing people who ‘are’ Ekone were there to help throughout. They led everyone to the grave. They were quietly present to help throughout while also standing in the shadows so that their presence was gentle in the space. I will never be able to tell them how grateful I was for their help and support throughout the process. This was the first night burial they had ever had. It isn’t their standard and yet they were beyond willing to accommodate us based on all the things we had requested.

The larger group left and there we were. Leslie, Sandy, Bob, Sean, Keenaan, Jonathan and me. In the still cold night, clear skies, stars brighter than I have ever seen with a gorgeous crescent moon. The men setup the cart where we would lay her body and complete our ceremony before wheeling her down the path to her grave. Leslie, Sandy and I were sorting some logistics (well they were, and I was doing whatever was needed) and pulling some items together. Then it was time to begin. Sandy smudged us all with blessings and incense. We stood in a circle and Sandy spoke to the sacred, great mystery, spirit calling in all directions, calling in our guides, our support, our ancestors. As we had done in ceremony so many other times, like our ancestors had done for thousands of years before this and yet this wasn’t like anything else. This ceremony was a closing of this life walk and so its flow was a little different. I surrendered and moved as I was guided. Sandy and Leslie would ask me something and give me options to choose, I would and then we would continue.

Mikaela’s medicine blanket was placed on the cart with the cords we would use to bundle and hold her. It was the blanket she was gifted when we held her rights of passage ceremony not that many years earlier when she was a teenager. The time where her tribe of women acknowledge her transition from child to young adult. Where they bestowed wisdom upon her and small sacred gifts to help carry her into adulthood. This blanket was covered in animal fur, it had holes chewed in it by our old dog Meera, it was loved and filled with the medicine of her life. I have endless memories of her walking around the house dragging this blanket (oh that drove me nuts…picking up every spec of dirt and fur on the floor) and then wrapping herself up and finding a cozy spot. Christmas, sitting and studying, traveling places in the car, it was never far. In the Cherokee blanket ceremony, she would be wrapped in her medicine blanket and given sacred herbs as offerings for her journey into her next life. In the way I was taught, we make offerings of sacred tobacco, cornmeal and sage to give gratitude for the gifts, support and help to teacher who give so willingly.

We continued. The boys moved her body from the car to the cart on top of her blanket. Sandy guided us and slowly we started. In the North and moving backwards (counter clock wise) closing the directions of her earth walk. There was a depth and beauty to the ceremony I couldn’t explain in words. I honestly was in an altered state so what I remember is how I felt and what came through at every motion we made around her. We each folded in an end of the blanket, from each direction. Moving from the North, to the West, to the South and then finally, in completion to the East. Honoring her, her life walk, her gifts to the world in this time and sending her off with love and grace into the other place, on the other side of the veil. We were the sacred 7 holding her in this blessed way. Sean, Bob, Keenaan and I saying goodbye. Sandy, Leslie and Jonathan…saying goodbye. Then we all took one of the cords and slowly, gently we tied them. I gave her the bundles she needed for her journey. We took all the flowers and greens and laid them around her body. Then this part was complete.

Leslie and Sandy stood on either side of me and we led the procession. Sean and Bob set themselves to pull the cart. Keenaan and Jonathan walked behind them. In the cold of the night, in the dark with only a small flashlight and the stars to guide us, we walked. We walked towards the dim candlelight that was off in the distant. Slowly, with touches of humor and deep sadness. It was then that it occurred to me how perfect this whole thing was. The timing. The night. The dark. The stars, the moon, shining the brighter than I had ever seen in my life. The darkness forces us to go inward. It urges us to sink into those places that aren’t always easy or simple and yet they are the most brilliant gifts if we just take the time to BE in that place. This was Mikaela’s doing. All my stress was her final lesson to me. Let go mom, let it be what it needs to be and it will be better than you ever imagined. No need to stress, trust me, I got this. She was a wise soul that girl. Her hands were all over this last day and in those moments as we walked…my momma brain thought for sure she was going to fly off the cart just from hearing the rattling and bumps in the path. Again, she knew me and she brought these miniscule moments of levity into the dark depths of my sorrow.

The group was waiting by the grave in silence.

In reflection with my dear Loren months later she gifted me with what had occurred at the graveside while we were in ceremony with Mikaela. Everyone had walked in silence to the grave. Then for approximately an hour everyone stood in total silence waiting for us to arrive. In the freezing cold, in the dim lighting of candles Jonathan had setup, finding their places to stand among old downed trees and bushes. Still, silent, listening, watching, waiting. This alone was the most tremendous gift to my child. The love and caring of this small group, honoring her and us. Loren told me that seeing the light in the distance as we walked towards them was one of the most beautiful things she had ever witnessed.

*Thank you my sweet sister and friend…you who have cared for my family since Mikaela was 6 and helped me deliver my son. Who has been in lockstep with me and us every step of the way over the past 18ish years.*

The night we buried Mikaela was stunningly beautiful and exquisitely painful all at the same time.

I have never experienced something so deep and sacred while also feeling the deepest pain imaginable.

We came to the entrance to walk into the site where her grave was made. There is a whole story I haven’t written about the digging of her grave. I wasn’t there with the boys and that was their yang to my yin so to speak. They prepared her final resting place and I prepared her body. Here I have shared the pieces of the story I have and hopefully one of the guys will write their part of the story so I can share it in the future.

The burial site that Bob (who oversees the Ranch and Cemetery) had picked at Ekone was beyond perfect and closer to the canyon which was one thing I had requested. The funny thing is that my request never got to Bob. Coincidence? Doubtful…again, she had her hands in so much. The boys unloaded their tools, Jonathan smudged everyone and created the sacred space for them to do their work. Through wind, rain and cold the guys dug. Pick axed, shovels and a myriad of tools, they worked tirelessly, with intention and a beauty of souls that no words can explain. It was so cold at one point that poor Keenaan, in his all cotton clothing, asked Jonathan if he could go sit in the car to warm up. Jonathan said, of course and Keenaan just needed to grab the keys when he wanted to go. Then a few minutes later Jonathan told me he turned around to find Keenaan in the hole digging harder than ever, stating that he could warm up by working harder. It took them hours and 4 of them to pull out the largest stone which now sits at the head of her grave. Tahan, Bob, Keenaan, Sean and Jonathan. They worked and created grounding by being with the earth and preparing her space in the same sacred love that had carried us through the days leading up to this point. They cleared the bottom of any stones and bumps as best they could. They laid down a bed of straw, Sean added seeds that he had saved of various types and he laid a line of cornmeal around the top edge of the grave. The boys made it beautiful and put so much of who they are into that space. To hold her body, to make the land even more sacred than it already is.

So we stood, the 7 of us at the entrance that led to her grave. With everyone standing in witness. The men carried her body to the side of the grave. I can’t remember which of them was doing what. As I stood by the head of the grave, what I saw broke my heart wide open with hurt and love. Sean took her shoulders, Keenaan her feet, Bob the straps that were to be used to lower her down. Sean got into the hole. Then Keenaan jumped down at her feet. Ever so gently and with the most sacred love I have ever witnessed, these three men lowered her body into its final resting place. As a mother it was beyond words to watch my son hold his sister in this way. Beyond words. Of course, in my final momma moment for her, I told Sean to watch her head. 😊 I couldn’t help it. Then the 4 of us stood over her, looking down and I knew we would never be the same. We had just embarked on the hardest journey 2 weeks earlier not once feeling or thinking she would die. We were just going to get her through this horrible thing that happened. It wasn’t to be and we were never going to be the same.

It was in this next moment that I realized we hadn’t planned anything else for this part of the burial. It was quiet and each of us were left with our thoughts. Then I asked if anyone would like to say something, share thoughts, etc. It was wonderful and perfect that Bob who spoke first. Standing next to me. He pulled out his notebook and began to read what he had wrote about Mikaela. He began with her favorite Shakespeare quote “All the world’s a stage, and all the men and women merely players: They have their exits and their entrances; and one man in his time plays many parts, his acts being seven ages.” He spoke of how amazing she was and how much she would be missed. In this moment, I knew whatever we did after he spoke would be perfect and just as it needed to be. It wasn’t ‘us humans’ who were doing this funeral thing…this was a motion of our souls, dancing and mourning that one of us had left this earthly plane to be the embodiment of spirit in another dimension and place. My memories of this time are like short snippets. I think Sean spoke and maybe a few others. I spoke. Then I asked if anyone wanted to offer up prayers or any other blessings. My uncle so beautifully walked up beside her grave and began to recite an Islamic prayer. See that night we were not of one religion or race or belief system. We came with our own practices, our own ceremonies, our experiences and our ways in this world. Then we wove a tapestry for her, with her, in honor of her.  Offered up sacred tobacco for any prayers to be added to the grave. We laid a sweat lodge stone next to her (thank you Leslie). We honor these stones and the grandmothers and grandfathers that carry all the earth wisdom over the ages. Leslie brought a staff with a hawk feather tied to it. This was Mikaela’s totem animal that Leslie experienced when doing journey work to help support Mikaela while still in the hospital. This staff and feather were to be her tools for her journey. Then Jonathan passed around a bowl of dried flowers for giving more prayers and blessings…also sprinkled over her.

I had to once again giggle, because at one point I leaned in next to Jonathan and said…what should we do next. He said, I’m not sure, what do you think? I said I’m not sure either? (I think no food for 3 days had taken its toll on us both. LOL.)

In between there were moments of silence. We were both spent w/o food and sleep as were the rest of our small crew who had been tirelessly working towards this time for days. I was told the temperature was below freezing that night. I can’t say I felt the cold at all.

In the cycles of moving through ceremony graveside, I asked one last time if there was anything else anyone wanted to share, bring forward, place in the grave…anything at all. “Are we complete?” Silence. Then after a long pause it was time. Sean handed me the shovel. I walked to the pile of dirt, scooped up a shovel full and let it fall upon my child’s body. I did this a few more times. Then handed the shovel to Sean, then to Keenaan and Bob. We invited anyone who wished to come up and do the same. My father, my uncle, my sister, Tahan and I’m honestly not sure who else. I sat at the foot of the hole and then the boys went into action. They began to fill in her grave with the dirt they had just removed less than 12 hours earlier. I began to sing. I remember some of what I sang. I asked others to join or offer up songs. I reached into the bowl of sacred water behind me only to find a thin layer of ice on the top. I broke through the ice and sprinkled water on her grave as they continued to add more dirt, then stones, then dirt. We sang Kundalini mantras and I sang the one song that came to me which was prompted by Seraphina’s post to FB….”may the long time sun shine upon you.”

May the long time sun shine upon you sweet girl. I didn’t sing it to any tune I knew. It just came out…over and over again. I sang her home until her grave was filled and they had moved the large stone to the head of her grave. Then everyone laid flowers on top of her grave. Cherry blossom branches is what I remember the most. The time of spring and being born again. She had been born into her next journey and life. She had bloomed and grown here and though we wished for far more time, her dark time here had arrived and she was returned to the earth to grow and blossom anew.

We said goodbye. The most beautiful and sacred thing I have ever done in my life and at the same time the most excruciatingly difficult thing I have ever done. I tell you this story and yet I am at a loss for words to fully share with you what that evening was for us.

It was midnight, we were complete. She was finished here.

There were hugs, thank you’s and tears, then everyone made their way back to the warmth. 

It was just Sean and I standing there. Bob, from Ekone, greeted us as we were leaving the space.

I was numb to my soul.

I walked quietly from her grave back to my car.

Part of me buried in that beautiful earth with her.

Never to be the same.

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Liminality

lovedeathHolding Vigil…

Slowly everyone left to go home, Sean and Keenaan went up to the room we had at the hospital ‘motel’ and Bob and I stayed. Me propped up in the big hospital room recliner, he on the hospital folding chair. Sort of like a vigil but more just the deep need to be with her, near her, around her and to not leave her. I dozed on and off all night but every time I opened my eyes, there he sat, next to her, just being. At one point in the middle of the night they performed one of many tests required to prove that she was brain dead. Washington state is very thorough about this and so over a specific period of time these tests are performed to ensure that their diagnosis is accurate. I watched, out of fuzzy, tired eyes and I prayed…maybe they are wrong…knowing they weren’t but hoping against hope. Like how I know Romeo and Juliet is a tragedy and I know the end, it doesn’t make me wish the ending was different. It is how I’m wired.

Back to Bob for a moment, this young man’s love for my girl was never lost on me and during this time in the hospital, he won a whole new level of my respect. During these last days, he cemented his place in my heart and soul. As much as I was hurting, his hurt and devastation seemed even bigger than mine. His actions of love were beyond what any of us can hope and wish for in life. We are not perfect, none of us…and in that time he showed a fortitude of grace and love that I’ve rarely seen in this lifetime. That night was weirdly fitful and yet it simply…just was, what it was. The vision of a boy, who loved and adored this girl and the girl lying in the bed, brain dead and yet still there and somehow connected. As a mother, I could never have wished for a better partner for my child. Now that boy has his rightful place at the table of our family and will always be loved for who he is as a soul in human form and how he is because he is one of ours.

I digress. So, we get through the night. Thankfully Starbucks opens early and I think by 6am’ish we have coffee in hand…thanks to Bob being able to function at this ridiculous hour w/ no sleep. He and I sit and talk for quite some time while we continue to process in the twilight’ish hours as the sun rises and we continue to remember the reality of why we are sitting in a hospital room with this girl we love and adore in a hospital bed. Her doctor comes in that morning and performs the last round of formal tests for brain death. We know what she is doing, she had already told us and then reminded us again, with what I describe as love. She hugs us and takes all the extra time to simply BE with us, as does her PA (another amazing woman). There is no mistake that these brilliant women are the ones caring for Mikaela during this time. It feels like the universe has orchestrated a tragic symphony and even in its saddest moments it is still beautiful. Her doctor completes the tests, it is hard to bear witness to this and yet necessary. Then this portion of the journey is complete. It is now confirmed that she is brain dead and that the 21st of March, 2018 will be that day which lives on her record for date of death. We are quiet, Bob and I, simply taking in the weight of what this is and what it means in our lives.

The night shift transitions to the day shift. Everyone is very kind. I remain in my big hospital recliner, which feels like a throne of sort and I think of how Mikaela would be totally entertained by this odd version of me holding court in her hospital room. At the time this was all lost on me because…well the obvious. Then the slow motion of hospital staff visits began. I was floored by the kindness, caring and amazingly genuine nature of all the people who took the time to come and be with us. Their hugs, their tears, their beautiful way of being and kindness. I rarely/barely got up from that chair all morning because it felt like the weight of the universe sat in my soul. My favorite RT guy, oh this soul he simply touched my soul with his kind and loving heart in ways words cannot say. So genuine and lovely so sad and kind. He and I had created a special bond over a challenging moment the weekend before and we knew what bound us. That is who she is, her ability, to bond people even from her medical state. That is her power.

The Buddhist Chaplain who kindly was always present from the start of our journey at the hospital. We all found our own special moments with this lovely soul over our almost 2 weeks in the hospital. Then the head of ICU nursing for that area. His words still sit with me. Maybe his words will help to mold my work moving forward. So genuine and true in his kindness. His witnessing of how I held the space and how we created that energy of holding, love and light to care for her during her entire time in the Nuero ICU. The nurses, all shocked by the news. Their long hugs, their tears and their loving hearts. It all reflected something I am only starting to see and understand…when we create the space and place for souls to come forward as their most genuine selves, this is the results. This is what we have the ability create. All of us can do this. Be touched and touch others in their hearts and souls with a simple intention to be our best and most loving selves.

By 8-9ish things were bustling again in the ICU and we had received many people. We had heard the organ donor team were slated to come and speak with us shortly. As he does, Sean showed up right at the perfect moment. The organ donor folks arrived too. Then another hard conversation. Because we don’t know what caused Mikaela’s brain to swell and didn’t know the root causes for what had occurred with the ADEM, and because organ recipients are immune compromised to help with organ acceptance, they could not take her organs. A smaller dagger and yet still hurtful. The women we met with were amazing! They have a horribly difficult job and how they handle it with amazing beauty and grace is humbling. Think of this, they only deal with bereaved families and asking those people to give their loved one’s organs to save other lives. I thought my life was hard…jeez, these people surely have greater gifts and karma coming to them in this life and beyond. These two women (yes more of those lovely ladies) were filled with compassion, hugs, sincere tears, love and beauty. They stayed for as long as we needed to process the information. They tried to gift us ceramic hearts to give out during some gathering of remembrance. I politely declined. They gracefully bid us farewell and gave their kind condolences. Mind you this whole time, my daughter lies in her hospital bed. Our little family facing her, everyone else with their backs towards her. Later we saw the ladies again as they were leaving, and they once again offered up the bag of hearts. This time I accepted. This time I knew that they were significant in this journey and another gift of love and light we needed.

Then our small, fierce, love posse showed up. They flowed in like the gentle waves that lap up on the shore of a lake. A gentle, yet deeply moving force to sort all the moving parts that were needed to create the sacred ceremony. To bury the beauty who laid in the hospital bed. To bring her to her body to its final resting place in a way that honored her and her short life.  Jonathan was working on the burial requests I had brought forward. Seraphina was organizing all the people and things we needed to come together for gathering, Kaethe was on point for ensuring we had all the misc. items that were required for moving her from place to place along with misc. ceremonial items. Like any event…there is stuff to do and stuff to get. Kaethe is like an angel who quietly drops in…gets info and stuff to do then floats out again and makes it so. Not to mention her help with the Muslim community connection. Kim was there to watch and catch all the moving parts to help fill the holes in the dam to ensure we were all fed, cared for, covered with whatever was needed. Kim took care of Keenaan and watched out for him all day. Nobody better to take on this task…I never worried about my son that day because I knew how fiercely and gently he was being held. There was my heart and he knew that it had to be held and cared for, and so it was.

I had scheduled a time for us to all gather for the honoring/ritual I wanted to hold with her that day. The events of the day moved the timing around as it did with everything we did that day…and it all worked out. That morning her doctor and the PA as well as the head of Neuro ICU all cycled through to check in and see what we needed and how they could help. These people were beyond amazing. My first, and most important request, was that we keep her out of the corporate funeral engine. They all agreed and supported me/us in making sure that this happened. I wanted to transport her in my car to go to the Mosque where the Muslim ritual of bathing and shrouding would be completed, then on to White Eagle. I didn’t want her away from me beyond them taking her brain to study. No refrigerators/drawers in cold sterile environments. I wanted her with me/us until we laid her body to rest. Then we all went to task on this goal.

There was a lot of motion that day, more than I can remember. I’m still learning of the stories of that day. I love them, they feed me and help me gain a completed view of all that was in motion that day. So for the few reading this who were there…please remember to share your stories with me. I will cry and my soul will be fed.

I will do my best to walk you through the big things that happened that day.

Burial….

We had hurdles. The team who is usually at White Eagle Memorial Preserve, unusually for the first time ever, were not available onsite due to a family engagement. It took some discussion on Jonathan’s side to explain the sacred nature of the land to beloved Jodie who manages the cemetery. My vision quest many years ago. His men’s work for rites of passage. Our ties to this special place. Jodie was amazing and they figured out how to sort everything and make it happen. We had to dig her grave and we needed a car that could drive her up to the entryway. The second was easy…thank goodness for the 4Runner. 😊 The first wasn’t a big hurdle because our boys stepped up immediately. Sean, when presented with the situation, immediately stated he wanted to do this work. Keenaan, Bob and Tahan were immediately on board. Jonathan was to be their lead, the keeper of ceremony/spirit space and driver. First, the guys thought they need to go that same day (remember now it is Wednesday). Then after deliberation decided that early the next morning would work fine for them to leave. At this juncture, I alert you to the fact that there are larger threads and powers at play in this story and we were simply meant to follow and listen. This was unfolding, just as it needed to happen, and we simply had to be present and aware.

Washing and praying…

I was raised in a religion where washing of the body is part of the ritual in burying a body. I learned as I grew older and had many experiences with the ritual of caring for people when they die, washing is universal. The cleansing of the physical vessel one last time before completion of the bodies journey. It is a beautiful, grace filled honoring.

I wanted to wash my child one last time. I asked that my beloved sisters join me in this. Katherine (she was one of the first people I told I was pregnant with Mikaela), Seraphina (with us since Mikaela was 5ish) and Leslie (my friend and teacher…she led the first sweat lodge Mikaela ever went to) were to help me do this work.  I could have done it alone. It would have just been her and I. I also knew that we hadn’t journeyed this world alone…why should this part be us alone…and so it was.

All the men and women gathered. We surrounded her in a circle and we held hands. We said words, prayers, sent love, set intention, surrounded her with the love that flowed so abundantly between us, for her. Once we completed this portion, the men went and stood outside of the room. Like sentries along the doorway and windows outside of her room. Holding space and intention for the work we were doing inside. With the assistance of our nurse, armed with washcloths and basins of warm water, we washed and cleaned my girl. Head to toe. With so much love and intention. An orchestra of adoration to care for this girl we all adored in our own special ways. When complete the boys returned and we shared some more thoughts and prayers.

There was only one last request that from that point forward, she not be left alone in the room. Our journey towards her burial had begun and we needed to hold the energy and space to honor this path.

Before I move on, it is important to add that not all that we did was perfect, sacred or serious. In this journey there were many moments of laughter, silliness, anger, frustration, delight, gratitude and every other emotion you can think of. Mikaela prided herself on being funny. I always said she wasn’t that funny but honestly, she thought she was fucking hilarious! During this time her spirit persevered and she didn’t miss a chance to inject humor and hilarity (which bordered on the inane) into the effort.

When we finished this ritual and finished our prayers in circle around her we began to do a ‘check in’ across all the moving parts. OMG the transition was hysterical. All sacred, serious, sad, honoring…then it was like a project meeting. Report outs from different leads, stuff still outstanding, oh dear god where would Keenaan and Sean sleep that night, who was fading, who was leaving, who was staying, who was still on point for some obscure thing. Wait, what…how the hell are we going to move her body from one place to another. We don’t have one of those gurney things. Shit. Sheets. Jonathan always has a solution…so does Sean. So now we need sheets. How many? Who the hell knows!?!? A lot! Can’t be short sheeted…yes…yes I did! So, on we went. Good thing we weren’t getting paid for this job. I’m fearful a review would have shown that we were all a bit off our rocker.

So it was, so we continued our preparation.

Funeral Directors suck…

If you aren’t plugged into the state system around providing funeral services or aren’t a hospital…you basically are somewhat screwed if you want to stay out of the corporate system.  Getting a printed/hard copy death certificate is difficult because usually a funeral home would give this to you. If not, in a rush if you need the certificates, you either must drive to Olympia or do the overnight mail and rush fee thing.

Why might you need to have a death certificate that quickly? You need the certificate to get the transport permit to carry a dead body in your own vehicle. In our case, I wanted to drive Mikaela in my car to the burial site. To pick up her body from the morgue, at the hospital, I needed the transport permit. I couldn’t get that without a hard copy of her death certificate (today all that stuff is computerized). Then I had to take the hard copy death certificate to an office at Harborview to get the permit. This is all based on the fact that if it is a weekend, you are totally screwed if short death to burial time is wanted.

So back to the hoops and stupid amount of effort simply to care for my own child’s body.  We succumbed to the fact that we would need a transport to take her from the hospital to the Islamic center where they would wash and shroud her body. An amazing Muslim woman I met a few months prior was willing to help us get the resource. She sent me a number. I called this guy named Michael. He was a complete jack ass! He told me NO on burying her within 24 hours, no on the transport certificate within 24 hours and that he would ONLY talk to me to get details sorted. He told me all the reasons he couldn’t and that I needed him to help me. After trying many times to hand him off to Jonathan, even after explaining I was having a panic attack, he didn’t care and kept badgering me, preying on my grief and my stress to get this last piece sorted. He literally kept telling me how he could do nothing I wanted, and nobody else would help me either and so I needed to work with him to get a new plan in place.  Well anyone who knows me will understand his response wasn’t acceptable. I wasn’t going to put up with that crap and wasn’t going to be told what to I could and couldn’t do. Though in the moment I was feeling defeated and worked over.  Jonathan grabbed the phone, got rid of Jack (his new shortened name of jack ass), who btw put his name on her death certificate. Yet we were left with the same dilemma. Once I find this idiots full name again I will be blasting it over social media to stay away. He was horrific!

I conveyed this issue to my friend who gave us the first # and she sent me another. She was so sorry about my experience and was on it to help me find an alternate. I’ll be forever grateful. She also went and bought the ‘special’ fabric needed for the shroud and brought it to the hospital. She was a true angel. (Please check out the work she does in our community at Eat with Muslims).

Thankfully round two was marginally better than round one and he was at least only telling me ½ of what I wanted wasn’t possible and that he wasn’t sure I could do it, but they could investigate it. He gave me the name of the man from the Islamic center to help me coordinate washing, shrouding, etc. This man, at the MAPS Islamic Center in Redmond, he was my saving grace. (This community is amazing, kind, loving and thoughtful on so many levels…please lend them support and honoring to balance the hate and violence they have endured…even being in Redmond PNW)

I called him, made salaam and explained who I was and why I was calling. Told him what I was trying to do and in Islamic tradition burying the body within 24 hours is the goal. I want to be clear on this front, I was born Muslim and my mother said when born Muslim, always Muslim. My daughter was an atheist by choice and I had raised her and her brother to understand, learn and appreciate all belief systems. I chose to weave many traditions into this journey and wanted to honor what I came from.

I found my ally and he was going to help make this happen. Thank goodness…or should I say Praise Allah. We went from having to make the trek to Kent to being re-routed to MAPS in Redmond. 11am the women volunteers would be onsite ready to receive my girl and our family to perform the washing (ghusul). He asked me to hold the line and that he would call Michael (yes but the ‘good’ Michael) the funeral director to sort details asap with me on the line. This Muslim man, he owned it like a boss and told the funeral director guy…we are re-routing to Redmond, this is going to cost $1000 vs. $1500 due to shorter trip and that Michael was going to get me that transportation permit (the golden ticket) in the time needed. Michael pushed back a bit and said I don’t know if I can get it that quickly and then how would I get it to her (aka me). My savior said, simple you mail it to the MAPS manager and he will print it out. “You will get it,” he explained, because this sister needs to get this done and we are going to help her.

Now the final piece of the puzzle had been set in place, at least for the logistics of taking care of her body and getting people to the right place on time.

There was more drama on timing, funeral director stuff the next day but I’ll weave that in later.

Wednesday Night…preparing for the last leg of the journey….

My father, his daughter Yasmin and Uncle were en-route to WA all day Wednesday as we made our plans. My father asked that I not remove her from life support on Tuesday night, so he could come in and see her before we started the process to bury her. It was an ask that worked out perfectly since we needed that day to make all the plans and ensure that my baby wasn’t separated from us for long…or stuck in some refrigerated drawer for days.

After the hub bub of the day, slowly everyone started to plan for their evening rest and ensured we were sorted for the night. Kim got a room for my boys, checked them into their room and got their keys back to them. Bob went home to get some sleep. Jonathan went home to gather tools and ceremony gear. Seraphina, Katherine and Michael all went home to rest and sort last minute details. Joel and Lee had a large van rented to transport people. All invitees to the burial had been sorted. ON and on. This didn’t touch on all the things we needed to clear from the room, the packing and aggregating of stuff. Shit we packed a lot into that room in less than 2 weeks. Who knew!?!?!  The packing up and planning to leave seemed almost unbearable for me at times.

As long as she was in that bed, on a respirator, she was ‘alive’ and I could keep trying to pretend she might come back, though I knew she wouldn’t. Then it was just Sean, Keenaan and I. Then nana, Yasmin and Chotapapa showed up. I think they took a car. I can’t remember. A whole new round of grief and shock and sadness. My poor father. Watching his granddaughter, now lifeless in her hospital bed. They had started to get closer over the past few years. He was meant to teach her Gujrati and because she had none of my hang-up’s from childhood, she was openly able to love and adore him as he deserved.

They cried, they tried to hold her, they gathered themselves and worked to check in on us. We spent some time together just being in the room with her. Lights low. Altar still in place. Talking about god only knows what (I can’t remember). Dad went to talk to one of the doctors who had been with us the previous week. We were all trying to process and not step on each other’s toes. We were just trying to figure out how the ‘fuck’ this could have happened.

As an aside, it is important to mention that my 72 year old father had now made 2nd round of 5+ hour trips each way from Michigan in less than a week to be with us at the hospital. First when she was sick, and we were trying to sort what was happening, treatments and waiting with the goal of her recovery. If we include his trip out for her birthday party, he made 3 round trips from MI in less than one month. Our relationship has been rocky for most of my life and as I have done my healing work, I think it has helped to heal us…this showing of love is what I respect and appreciate most about my father. He showed up when we needed him, he did all he could to be there and continues to do that. Thanks Dad.

Back to the story…to add to this fun, bodies in this state start to do what they need to do. She had a lot of congestion so her poor nose kept oozing for hours that evening. It felt like going back to when she was a baby. I didn’t care, I just kept wiping her nose and holding and loving her. We live in a society that doesn’t prepare you for this. We are death phobic and therefore we don’t discuss any of the harder things. Bodies do what they need to do, so we need to know this and deal with it. They kept her on a cocktail of meds to keep her alive until we took her off the ventilator. It wasn’t optimal, but it worked out just as it needed to.

After the Tootla’s went to their hotel for the night, with plans made for the morning. I settled in. Our amazing nurse Cherry and assistant Aziza were angels in human form. With the doctors and nurses all aligned on timing (as the hospital night shift transition occurred) we had a plan. At 5am we would take her off the respirator. I had reached out to my beloved Kundalini yoga family…Michael and Kristin to please get up with me at 3am for Sadhana. We would complete a full meditation (in our respective locations) and then I would play Akaal by Ajeet Kaur while we held her on her final journey.

sadhana

#gurusingh #wisdom #gratitude #sacredpractice

 

That night Aziza and Cherry made my bed with warm sheets and more love than I can explain in words. We all talked about my plans for the morning and I let them know what I had planned with Sadhana, etc. They were all in. They held us in the most beautiful, gentle and kind way. Nothing but pure love and light and support. These two women are forever embedded in my heart and will have my undying gratitude for all of eternity.

My son and husband went to their hotel room. Sean had been running crazy that entire day. He hadn’t had time to spend with her and say his goodbye’s. He wasn’t meant to be there that morning. The boys were all meant to be on the road.

I went to bed that night, in the warmth of blankets in a bed made in love for me by precious Cherry and Aziza. At a moment, in the middle of the night, I opened my eyes to see my husband’s back, sitting in a chair, next to our child’s hospital bed. Had I had more energy I am sure I would have wept from the beauty of that moment. This man who met his daughter at 2.5 and knew that their souls were meant to be together. This girl who couldn’t have adored any man any more than she did her father. They were always meant to be together. They were souls who found each other on this life’s journey and got to enjoy a beautiful connection that grew what they already held with each other.

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So our journey continues…

WP_000000 (2)Preamble

September 22nd will mark 6 months since this sacred soul completed her life walk and continued her journey in other realms. I am called to begin sharing this as I prepare to journey to her sacred site in ceremony and reverence.

Doing anything else seems easier than the effort it has taken to sit down and start writing this part of our story. This picks up where the last FaceBook/Blog post left off. A deeply connected soul sister reminded me yesterday (really over a month ago now)…write this all down. While the feelings and the memories are still new with you. These words may come to help someone else and ultimately, they may also help you in your healing.

I’ve also grappled with sharing this because it is so deeply intimate and personal. It is the story of the most sacred journey of life. For my family, for the circle around us, the ones who leaned in closest to us please know I tell this story with the goal of honoring the gift of this walk we took together. This part of the story where many different moving pieces were held creating the spiral of life…ensuring we were all held up together…arm in arm.

“…. we go inward to tend closely to the final stages of this journey. We ask for your continued prayers and for your patience as we will need time to gather ourselves before we are able to reach out in the days and weeks ahead…”

Welcome to this sacred journey of witnessing, honoring, loving and learning…so we begin….…

When I posted the notes on FB to ask for prayers urgently, the medical team had rushed Mikaela out of the room down for a CAT scan and then an MRI. They were gone for more than an hour. She should have come out of the ROCK (sp?) paralytic by that time. They had just performed the tracheotomy and we were all delighted to simply see her sweet face without the tube and apparatus in her mouth.

Then the waiting began. Mala in hand, focused on prayer, I sat in a chair where her bed had been, encouraging my boys to also pray. Calling Bob back to the hospital and then we waited…waited…waited. When the doctors had finally come in, Bob and Michael had joined us. Sean and Keenaan to my left, Bob and Michael across from me, the doctors on my right. Me still in my chair after a short and somewhat panicked trip downstairs to find earth to stand upon, grounding and smudging myself.

This was my effort to manage the fear and sheer panic that had enveloped my entire being. I thank every power of the universe for Sean who went with me and my sweet boy who showed up for the most important part…the hug and holding…the 3 of us holding each other with her spirit and being in our center.

Okay back to the room. In came our Neuro-intensivist and with her a brain surgeon. Then she began to speak, in the ways good doctors with a heart know how to do when hard things are happening. This woman, this doctor, she won my respect that day in ways words can never express. She began to explain. It didn’t all sink in. They put her in the CAT scan, then the MRI because she was looking for every possible option to help save Mikaela. There was the tiniest bit of blood flow to her brain, despite the swelling and there was a 2% chance (I think that was the %) that they could save her. Put another way, I think they said that there was a 98% chance she wouldn’t get through this. (Things have faded fast in 6 months) My first response was…do it, do anything you can to save my child. They didn’t move. What they had really said hadn’t sunk in. I wasn’t understanding, mostly because I didn’t want to know what they were saying. The looks on their faces…doctors become somewhat expressionless in these situations as part of how they manage and cope with delivering horribly shitty news. (Respect them like crazy…couldn’t do what they do) So she explained it again and then I started to understand. The %’s and the situation. I was still trying to ‘understand’ so said, “I’m going to ask you a hard question” and then proceeded…”do either of you have kids?” The surgeon said yes. I asked, “If you were in my shoes, what would you do?” Yes, I asked because these people know this shit far better than me and they have dealt with it for years (in most cases) and I was already petrified, trying to hold it together, worried like crazy about my child…I needed someone who was solid, grounded and rational to answer my damn question. He was kind and honest. The thing I got from his response was that I was never going to get my girl back again, even if we saved her ‘life.’ She wasn’t going to be my Saajeda Jzu Jzu anymore, not like we knew her. I looked at both of the doctors, then to my son lying on the floor in shock and tears, my husband crouched on the floor devastated and back at the doctors again. I shook my head no and said we can’t do that to her. Nothing else, we have to let her go and we cannot put her through anything else. We have to let her go. Then I looked at the ceiling and I screamed ‘why have you forsaken me again? ….why have you taken my other Saajeda???’ 

I remember asking Michael to take care of Keenaan. I remember her doctor and I sobbing and holding each other. I remember that feeling. That feeling that is only devastation and pure grief, a pain that no words can describe. Grief is such a powerful, visceral emotion and there seems like no words to really describe how it can touch the depth and breadth of our being. In ways we cannot ever imagine or feel from anything else that touches our lives. Once we had tried to ‘somewhat’ compose ourselves from the wrecking ball that hit our lives, her doctor said…”we will bring her up.”

I can’t tell you how it all felt because as I write this the deepest of sorrow washes over me just like I was standing in that room again. When they brought her back and all her caregivers and her family (us) stood there completely shocked by this unanticipated turn of events. This wasn’t inline with her diagnosis, this wasn’t part of the options of what could happen. Everyone seemed impacted. The people who had cared for her simply couldn’t believe this was happening. I guess in some odd way it made me feel like I wasn’t alone in my devastation. The PA, her primary doctor, her nurses, her nurse’s assistants, the RT team…we were all shocked by this devastating turn of events.

They brought her back the room and I can’t remember if I cried or if I kept up the energy to protect her. Her spirit was still tethered to her body and I was cognizant that what we did still had an impact on some portion of her energetic body(ies). That was when our lives were forever changed. When I realized that this book, that held the story of my life, our lives, from the time of her birth was coming to a close. I died with my daughter. Never to be the same. Realizing that a new book would be required, the one where life didn’t have my girl in it…not in this physical world. A world that was dimmer and quieter and a lot less fun because Mikaela wasn’t there to stir it up with her special sauce. As I do, it was time to go into action, in crisis, I manage and handle stuff because it allows me to manage the flow of emotion that could simply wash over me and then drown me.

Michael, my brother in law, came over that afternoon because he had a feeling. Kim, one of my closest friends, had planned to come over after work that day and so he was enroute and had no idea what he was walking into. I called my father and tried to tell him…poor man…he couldn’t understand me and so called the Neuro ICU unit we were in to find out what was happening. Jonathan showed up (based on my texts for prayers) and then the men called in the women. I can’t remember how Seraphina arrived…maybe from Facebook message. I texted Loren. Jonathan called Momma Blue. Michael called Katherine. Then our small, strong, amazing group showed up to guide our way through the next two days. Jonathan and Seraphina wrote the post on FB and I reviewed, made minor updates and added the picture…then posted. The nurses brought baskets of food and snacks. I’m pretty sure Sean, Keenaan, Bob and I looked like zombies wandering around wondering what the fuck just hit us. The rest of that night was mostly a blur. The women arrived, we hugged, I could barely cry, I sat exhausted and stunned in the waiting room. If I had it to do over, I would have sat with her the entire time. I know I needed the break simply because I had to figure out what we had to do next. There was no thinking watching her because all that came was tears, shock, anger, devastation.

I do remember Jonathan and I going into the room, the same thing we had done many times in the previous days, standing on either side of her and praying, doing energy work, honoring and witnessing the guardians/ancestors/angels/divine beings all around us who were holding her, us and waiting to continue to help on the journey.  I looked at him and said that we had two choices on what to do…bury her at Ekone or cremate her. I didn’t want to cremate her unless we had to. This soul brother, he knew my heart and he was my witness for all of my prayers and vice versa over the weeks that led us to this point. So began the start of the plan we put into action. I had to bury my child, I needed to give her back to the mother for her physical body to live on and for her soul to soar. I also knew I wanted to have some type of ‘spiritual’ ritual on Wednesday and knew I needed help with the burial ceremony, her final rite of passage. Who needs to be here for the ritual/who will help?, asked Jonathan. Just as quickly I answered…Leslie. So it was, the anchors & guides required for creating the sacred container for this journey …were put into motion.

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What is a mother? Who is a mother?

          Who decides “what” is mother and what is not?

Mother Earth

Mother Nature

Mother Cedar

Animal mothers

Plant Mothers

Insect Mothers…oooh Queen Bee

I sit, looking out at the water, the mountains, the trees, the birds, the insects….I see and feel the mother all around me and within me.

This day, in the US, we celebrate our mothers.

For 28 years I have celebrated my mother even though she isn’t on this earth. A motherless daughter for over 28 years.

23+ years ago…the child that grew in my womb, gifted me with the status of momma, She has now been gone from this earth for 7 weeks, 3 days and 5 hours’ish.

I always said, she was the one who made me a mother. The reason I got to celebrate this day. The one who took the sadness out of this day for me and brought back in the joy. Last night as I thought about this day, I wondered…at what point did I become a mother? Was it when I knew she was growing inside of me? Was it when I fully embraced and committed to being her person? Was it before I knew she existed? Did I always have a mother’s soul? I always loved children. I loved caring for them and honoring their precious souls. Despite the fact that I wasn’t always good at it. 🙂 For the record, I am not always good at this mother role either.

I suppose it doesn’t really matter ‘when.’ I am her mother. I am his mother. I have had the honor of being blessed with two amazing souls who have enriched me, taught me and guided my existence for the past 23+ years.

This next part is really about my experience of ‘what makes me mother.’ We all have our own stories and I invite you to reflect on your own and share if you feel comfortable. It is in our sharing, in our community that we can witness and honor each other. Life wasn’t meant to be lived alone, we are not meant to grieve alone or laugh alone. With you, my community, my people, I learn a new way to continue walking and living.

My daughter was my greatest teacher. She came to save my life. At a time when my spinning and lack of direction had far outrun its useful life. (I promise to come back to Mikaela and how she saved me) At the time when I finally decided it was time to recommit to do with my life. Despite the gaping hole in my heart, left by my mother’s loss, I knew I had to change something.

There simply was no motivation to do so. NONE. My drive came from wanting to make my mother proud. I wanted to honor her multitude of sacrifices to give me a better life. She chose the harder path, the one less traveled and she did it for me. She stayed in a place where she knew few people, with little to no support and persevered. Her daughter was to have a better life than what she had. My only drive was to ensure I lived up to all she worked so hard to gift me. When she left this earthly life, that drive left with her. That hole was gaping and at 17 I had no idea what to do. My Saajeda, my mother, my fierce protector, my loving guide, the other half of my heart had gone to another place.

So from the age of 17 to 22 I walked around directionless. I could hear my mother in my head and heart pushing me gently to re-engage. I simply didn’t want to. There was no reason to. I had lost my motivation. I had been kicked out of my house by my stepfather 1.5 months after my mother died. I lost my entire life (literally he took all of my things…clothes, retainer, car…250k insurance money, house and cars paid off…everything)…so why the hell did it matter. The men in my family didn’t know what to ‘do’ with me…despite their ‘family meeting’ to discuss my ‘issues’ at 18. I am my mother’s child…I’m stubborn and strong and tenacious. I worked, I partied, I engaged in self-deprecating behavior more than I would like to admit. Then in a moment, in a flash, early in September of 1994, I learned I was pregnant. Single, having just decided to return to school and with a man who really didn’t want to be with me (even after dating for a year). Those months that followed were filled with divine intervention and struggle. So many opinions about ‘what’ I should do, many trying to help and be realistic in the ways they knew how. Many who simply honored and supported me without judgement. When I accepted and settled into my current state, I realized I better get my head out of my ass and pull my life together so I could be a good example to this child I was about to have. I knew I was a girl, I knew that being a good example was even more vital. I knew I would love her fiercely and she would be Saajeda in honor of her grandmother, to strive and grow farther in life than her grandmother and mother put together.

On the morning of the Oklahoma City bombing, April 19th, 1995 she began her journey to enter this earthly plane. I had no idea when I decided to name her after her grandmother what awaited us. Her and I, we journeyed together that day…me pushing and her persistent travel from her warm safe home out into this crazy world. I looked down, I saw her big, beautiful brown eyes and that gaping hole in my heart was filled. My mother sent me this child. She knew it would be all I needed to continue on my life journey. I only recently remembered how I always felt that my mother and Mikaela hung out as souls together before my mother sent her to me. When I was pregnant I would see this picture of my mother choosing Mikaela, spending time with her and teaching her…maybe more accurately preparing her. I was never to forget where my child came from and how much she was like her grandmother. Once we went to South Africa and everyone who saw her all said almost the same thing…she is so much like her grandmother…her looks, her demeanor. The difference is this girl, this soul in human form was far stronger than her grandmother and her mother. Her ways were of pure tenacious power. Her persistence conviction that drove me crazy and delighted me at the same time. All of the awesome with less of the ‘messy stuff’ that held my mother and I back.

A tale of 3…A grandmother, a mother and a daughter. Souls woven into the fabric of each other and across this world and the other (whatever we feel that other is). I never thought I would lose my child. My Saajeda Mikaela. I thought she was long for this life and I was short. Except I was wrong. She has returned to be with her grandmother. She who made me ‘mother’…no longer her to lavish me with hugs and kisses and her special brand of loving. This loss, deeper than that of my mother and yet the hole in my heart is different. It isn’t that gaping, empty wound. It is an aching and sadness for my child on levels I cannot explain and yet I still have purpose. She taught me that. That it needed to live within me. To be strong and good for myself…so I could be that for my family, for my community. She didn’t just fill that hole in my heart left by my mother…she taught me to be better in all the ways we can be in this life. My heart has grown stronger and more beautiful because of her and her brother. To be a good example, to be good to myself, to honor the in between spaces and all of the obvious things too. She pushed me to all of my edges. My own mother taught me to say I’m sorry and I said it often to Mikaela. Keenaan will likely hear it for the rest of our lives together. I made her cry, she made me cry…sometimes we cried together. Some days we were best buddies and others we were absolutely not. I was always her momma first and I explained all my emotions even when I shared too much. She was my partner in crime on so many levels and the simple joy of hanging out together was a gift. I remember the same with my own mother. I now imagine that her and my mom are doing the same. Souls woven together in this fabric of spirit and life…of this world and the other.

Today the grace carries on in this world via my son. My sweet boy who beautifully carries the torch of child for himself and for his sister. He outdid himself today by gifting me a gorgeous cutting board he made. He has been telling me, Jzu Jzu always took care of those things and I just signed my name and got to help her…now I need to do it. Well sweet boy, since we embarked on this journey in early March, you have continued to step up over and over again. Showing the same fortitude of spirit and beauty of soul that matches that of your sister and in all of the unique and amazing ways that you are you. You and your sister are my greatest gifts as a mother.

 

What is a mother? Who determines motherhood?

I think that answer lies within each of us. It is how we show up. It is how we love fiercely and gently. It is where our hearts live outside of our bodies. It is holding our community in love. It is how we hold ourselves in love. It is a million things that are hard to put in words and for each of us those definitions are unique.

For me…when I carried my daughter in my womb, I became her mother. She became the best and most beautiful creation of my heart. We were the grace each other needed. Then that sweet girl called her brother into existence. She gifted me by wanting a sibling and I always said…she came for me…he came for her. Though my words mostly focus on how I became mother, how I continue as mother, how I have grown as a mother is thanks to the balance and beauty my son brought to my life. I am beyond grateful for my son, his gentle and beautiful heart and the quiet strength he brings to life and our days. He reminds me how to stay grounded and aware when I’d prefer to fly away. I’m grateful for my daughter and her bright light that gifted me so much in 22 years. I’m grateful for all the mothers who are part of the greater fabric of my world. The ones who have walked side by side with me through this journey of motherhood. Ones who have taught me to be a better mother. The ones who have held my children when I was less able to. Now the ones who surround me as I learn to walk as the mother of 2 in a different way…all of you who remind me what true love looks like daily.

I love you. May blessings and grace surround you today and always.

Zaakera

 

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No words…

No words can capture the gratitude we feel for all of the prayers, meals, love and support we have received over the last 12 days. Simultaneously there are no words that can contain the immense sorrow and loss we feel in our bones today for our sweet Saajeda Jzu Jzu.
This afternoon, Mikaela’s brain experienced severe swelling that caused a catastrophic loss of blood flow to her brain stem and brought the chances of her recovery to an end. She is on life support pending organ donation where she will provide the much needed gift of life to others and live on through them. This was her wish.
We ask for your understanding during this time as we go inward to tend closely the final stages of this journey. We ask for your continued prayers and for your patience as we will need time to gather ourselves before we are able to reach out in the days and weeks ahead.mikaela

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March 19th…

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“You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it.”
Maya Angelou

Plus…..https://www.youtube.com/watch?v=fGNR5yCIOmw

This is my day in a nutshell. Really our day in a nutshell to be more accurate.

For 8 days I have told every Respiratory Therapist about the issue with Mikaela’s bite block, tongue biting and bleeding and overall challenges with the trach tube stuff. Today the saga continues. The bite blocks placed yesterday were sub optimal in the fact that they couldn’t get into her mouth to clean, she salivated too much and her mouth was so far open swallowing wasn’t easily possible. This led to a host of issues we were seeing. Primarily this morning she had pushed one of the bite blocks over with her tongue under her tooth that got pushed forward some. Today’s RT guy (whose name I have chosen to forget) came in, I asked him if he knew about her RT stuff. He sort of said yes and that was it. Then while talking to him, his phone rings. He answers (rude) and then I try to talk to him more about what to do. He complains about the situation and basically says it isn’t going to work and we have to do something else. I ask about the tools he has at his disposal. He says he doesn’t have the bite blocks…I curse in my head…feel frustrated during rounds when he has all the ‘answers’ and I finally get a chance to say something about the situation…I’ve been tracking for 8 days…vs. him seeing her for less than 10 min that morning. If you know me at all…you are already seeing where this story is going. So around 1ish (I think) I see she is struggling more with the mucus, etc. and I am now angry because NO RT anywhere, no plan that I have heard of, etc. Our awesome nurse calls RT to urgently come down and deal with this. We (the nurse and I) plan for a dose of fentanyl before they begin work..they have 10 min to setup and prep before the drug hits and she relaxes enough for them to re-do everything with a new approach. They are setting up in the room, I walk in, try to start talking to the guy and his assistant RT lady and his phone rings again. He takes the call and as he walks out of the room I continue explaining that I need a step by step of their planned approach and need them to communicate w/ me and her while they are working. I also need him to turn his phone off and not answer it while he is working on my daughter. The other RT, Juliet, now tells me he cannot turn off his phone as it is a hospital phone and he has to have it on. Sort of snotty like. I very quickly reply, while he is focused on my child he will have no distractions or we will find someone else to work on her. I go out of her room to find him…he is standing at the nurses station chatting with people. Mind you the clock is ticking. He sees me approach and heads back to the room. I stop him and reiterate my expectations to which he is not to pleased. He start saying stuff to me (again in the tone of I am dumb and don’t understand)…I get mad at this point and tell him I have been doing this for 8 days so he is going to need to work with me..or something like that. He says to me ‘this isn’t going to work’ and then proceeds to get Juliet and tell her they are leaving. Walks away out of the ICU without another word to me. You can only imagine how livid I am at this juncture. He returns 10 min later with his boss. At this juncture I tell them to not go near my child and I walk off to talk to the manager. She was very nice, listened, was respectful and took all my feedback and agreed that this shouldn’t have gone on so long. It is a hospital so at this point they are also trying to pacify me to ensure that there is no trouble. I have a bit of a meltdown in the waiting room telling her that this has been complete incompetence on the part of all the people I talked to about this issue. She agrees, we make a plan to move forward and go back to the room when I have calmed down. Turns out I was right! Shocking. She bit through her tongue in one place and has some other soars on her mouth from the 8 day ordeal. They did get a bite block in that was like the original but are able to have it barely off the tooth. She has another tongue depressor like bite block (funny how stupid RT guy said they didn’t have those bite blocks)on her other side to ensure the tongue stays in the middle of her mouth. So where does this leave us.

The trach tube is an issue, the mouth needs to heal. She isn’t like to come off the ventilator by end of week so we are opting to have them do a percutaneous (sp?) trach…a small hole that should close with limited scaring. This will get rid of the mouth challenges to help heal and likely make her far more comfortable than having the crazy happening in her mouth which is extremely uncomfortable. If her blood coagulation look good tomorrow they are going to try and do this tomorrow. We all feel it is the best course of treatment to help her start healing the most important piece…her brain.

The above experience was filled with good and bad. In the end I learned a ton!

*Advocate harder and stronger sooner vs. later.
*Ensure your nurses are aligned with your care approach and for me that means a heart centered approach in balance to all the allopathic methods. Partnering with your nurse is key once you have the right crew on board.
* Ensure you advocate with the management to have the nurses you want covering care. After 11 days in the hospital…I don’t need to yield to individuals who are not a match for our energy, in our space, to support healing in the ICU.
* Talk to everyone who is in the care group…tell them all your concerns and ensure you gain their guidance and expert knowledge on ways to solve the issue. If enough people are aligned to the issues/needs/fixes the likelihood of getting the solution covered is higher.
* You don’t always have to apologize for being a fierce protector of your child. In fact, in this situation I did apologize to the RT people after thanking them for fixing her up as best they could. I kind of wish I hadn’t added that last part. Though I also hate when I lose my cool on people. Today I needed to own my fierceness a bit more and be unapologetic for it.

Today my ‘dream team’ nurses have been holding us. We got our first pick for coverage tonight and so now I head to bed.

Thank you Chuck for feeding us tonight with great burgers from down the road.
Thank you so much Suzy Hall for the Starbucks gift card! So awesome and perfect. Between you and Annette Bouvier Long we should be set for coffee for a good bit. Though the guys are going down to get coffee so I have no idea what our daily spend is. LOL
Thank you to Michael Niall for being a rock for me as I had my meltdown today. You are an awesome brother in law and you always have the right words to make things sunnier. Also thanks for bringing back my orange notebook I left at home.

I am surrounded by my fierce nurse goddess warriors. It isn’t lost on me that these amazing young women are showing up in a big way for one of their own. Angels in medical scrubs.

Time for sleep.

Thank you for the love!
Z

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March 18th… “The flower that blooms in adversity is the rarest and most beautiful of all.” ~ Walt Disney Company, Mulan

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When she was small she loved Mulan. Of course that was the Disney character she most resonated with. Isn’t it fitting today too?!?! 🙂 She is my warrior. I am her warrior. Together we shall join our powers (like the wonder twins) and fiercely yet gently travel this road. With her father, brother, Bob and close family grounding us. We will do this thing with a passion and determination that goes beyond measure.

Yesterday when I finally got to grab a quick shower, Sean and I had a moment to talk. Not something we have found much time to do these past 10 days…but we try because it is important to connect on ensuring Keenaan is okay, each other is holding up and our partner in this journey, Bob, is also held as we hold her. Yesterday all 3 gentlemen in my boat talked to me separately about schedules. I swore they were in cahoots but it turns out I just needed to learn something new.
It is funny because I was sorting scheduling with Keenaan via my support team leads but he seemed to be all about it so of course he got to drive that and what he needed.
Then Sean asked me. Ugh…I thought I have no idea. Poor guy is trying to ensure I’m covered and I’m trying to ensure he has what he needs and basically this could have turned into a big squabble (which neither of us had energy for) so then there was an epiphany. Actually more like a picture/vision that floated across my mind. I saw a see saw…on one side sat Mikaela and I. I was holding her. On the other side I saw Sean, Keenaan and Bob. (During the past 10 days Sean and I have had a few conversations about how grounding and healthy it is to put your hands and feet in and on the earth) They were on the side touching the ground. They were the grounding. In my minds eye, they are the ones who are putting their hands and feet onto the earth and holding us solid. Merging with the energy of the mother, all of life, held in love. It is my deepest belief that the earth can heal us, because we are all connected, one energy, one continuous rhythm of life.
Then Bob asked me about scheduling later in the day and now I had this picture. We sorted what would work and I moved on. This morning as I recounted this picture to Bob, I struck but how much more grounded I felt. How there is nothing we cannot tackle if we can simply sink into and honor/be in synchronicity with the energy of the earth.
So Sean goes back to work tomorrow. I know his grounding will ground us. Keenaan is apparently supposed to go help weed for a dear friend. Bob keeps creating beautiful art and delighting us all with his amazing talent. I think we are on a roll!

So how was today?

The Good…
* Storming was greatly diminished due to the Oxy and a new drug they gave her…Claudadine (sp?). There were storming events…and they were triggered by Respiratory Tech time…aka mouth cleaning and bite block positioning.
* Bite blocks are now in position to take pressure off the tooth. It is as good as they could get it for now and I will be checking closely to watch for shifting, etc.
* We slept, she has gotten more rest, today was peaceful and chill. Basically we had some family time and it was good! Especially after it took us 2 hours to figure out lunch. (We aren’t terribly decisive but once we got to the point where we knew it was Bimbo’s Burrito’s…things moved a touch faster…I wish we had Prime Now or these other food delivery services on the island…they are so stinking convenient)
* Dinner tonight was provided by Frederica Jansz and it was AMAZING. Lamb Moussaka and salad with rolls. Our appetites have been so all over the place that a regular eating time is still something we are working on. It is a gift to have the few meals a week that are home made and balance that with having access to Seattle’s vast array of goodness. I think we are finding a good balance.
* A dear, close, amazing and well loved friend from across the country came and gave me one of his epic hugs today. It was awesome and though you spent most of the time putting together a puzzle with Keenaan, the quiet and grounded support of a hug and a smile on a quiet day like today struck the best balance. Funny how you are so good at that without even trying. I loved that Keenaan and Sean were delighted to see you too.
* OMG a surprise gift card from Starbucks arrived from Annette today but no last name. If you are the Annette who sent us this…THANK YOU. Second, please PM me so I can properly thank you directly. We have already used this 2x today. Good lord the place in the hospital makes a killing off of us. A steady flow of Starbucks is now our greatest treat.
* Plasma Pherisis round 3 is tomorrow. So that means Friday is our last day. Praying we continue to see improvements as treatments progress.

The not so great…
* The storming events all seem to be triggered by Respiratory Therapists coming in to do their thing. 😦 The bite block placement required 2 guys (one from yesterday…Ruben…now my favorite RT), me and both our nurses were in the room in addition to our friend Farah who is an ICU nurse here too (she was visiting). It seemed like an ordeal that would never end. They had to push a decent amount of fentanyl to get her to stop storming. It goes to prove how strong the body can be when in that flight or fight reaction. She got through it. We have something rigged that is ‘good enough’ though not optimal. Ruben really needs to invite a bite plate that could double as a night guard…that accommodates the trach tube. Seriously…the stuff they have for tools, even after he did a bunch of research, are crap. People lose teeth and stuff from equipment not accommodating something that seems pretty common. I was just grateful to them for the effort and how Ruben included me on the decision making. He ended by rubbing her forehead and continually telling her how wells eh did. So sweet. What a guy…so even though it wasn’t great…it still ended well.
* Mikaela had one really strong storming event right before bedtime tuck in. It is so hard to watch and Kelsey, the charge nurse, was so astute and saw our faces of worry (the combo of all that happens can feel beyond overwhelming for us and I cannot imagine what she is dealing with) and told us this…They have seen a number of younger girls come through in the past few months with similar situations. Both are now up and walking and have come back by ICU to see everyone. OMG this woman, she has the most beautiful bright smile and with that message instantly all the crap that was holding me fell away. An angel for sure. (so really it started bad but really ended good!)
* I have to have some harder discussions with management staff here tomorrow about the RT stuff, about our nurse list to help deliver continuity of care, the Inn at Cherry Hill staff about that damn hot water…though we don’t have a room after tomorrow because they are booked. I need to connect with the Social Worker on this and a few other items. Send email to insurance people to ensure I have a primary contact for the moving parts of her health care needs.

Lessons Learned…
* I think I covered some this morning so apologies if I repeat myself.
* Quiet conversation, total quiet, some laughter and friendly ribbing along with uber focused times of Mikaela care can bring a lot of beauty to a day. I’m grateful for the time I have with these wonderful men daily. I miss my boy when he isn’t here but I hold him close in my heart and we talk a few times a day. Time with your people is a gift…regardless of circumstance.
* A quick hug and a kind word of support from a friend is healing and the best therapy to a weary momma. Not having to talk about her status all the time and checking in with others on their world is a nice balance…when I can do it. I never know what my day/time will look like so I am mindful and grateful when folks simply come and drop food, give a hug and then graciously say they need to run. I am equally grateful when my ‘project team’ is available and simply come sit in the waiting room so I can run out and cover off on stuff..then run back to the room. There is no rhyme or reason so I am careful to keep the doors cracked and the flow small to ensure balance. I want to see everyone…sadly…I cannot because she needs me and I need to be with her. There is a lot of in between in that statement that words cannot explain. I will continue to reach out as I can and if you want to help…please contact Seraphina Gordon (Seattle/Eastside) or Cherie Fontana Levan (Bainbridge) as initial points of contact for things we may need, etc. Seriously between Seraphina, Cherie and Maureen, I think they might know more about what I need than I do. LOL
* Sleep is so good, when you can get more than 5 intermittent hours. 🙂 Mikaela and I both needed it.

Ponderings…I did a lot of that above so I will spare you more of my late night musings. Suffice it to say…I sit in this room, with my girl who is as strong as Mulan and I see her fighting to heal and come back. I will hold her, while others sit at the other end of the see saw (my guys) and the rest of my family and community. You are all so phenomenal and I am grateful for your time to read what I am writing and to respond.

I’ll repeat this a million more times…community is a gift for us all, in times like this…I’m humbled by how all of you have shown up for us. The love and support is beyond palpable.

So for now, Thank You!

With deep love and gratitude…Z

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