One week ago today our Keyan left her physical body behind and began her eternal journey. One week of sorting out logistics, planning services, writing an obituary, speaking to a news reporter, panting nails, clothes shopping, hair-doing, attempting to eat, attempting to sleep, and welcoming friends and family from all over to celebrate Keyan's life. It has also been one week of deafening silence, indescribable physical pain, an emptiness in my soul that I never could have imagined, and incredible amounts of sadness. My friend Ann once told me that I would never be able to prepare for loosing Keyan and I now know how right she was. In my wildest imagination these feelings are unfathomable.
I have a lot to say about this past week but today I want to write about Keyan's last 13 hours with us. I have held many of the details close to me but today I want pull the curtain back and share them with you all. The weeks leading up to July 2 deserve their own posts because of both the pain and beauty we experienced with her but those will come at a later time. Today it is about her going home day.
Around 4:30 Sunday morning, our nurse knocked on our door to wake us up because she just could not get Keyan comfortable and settled. We quickly ran out to her room and upon taking one look and listen to her, I had an immediate physical response and had to run back to the bathroom where I was violently sick to my stomach. I knew at my core things had taken a turn and we were in our final time with her.
After getting my stomach back under control and assessing what was going on with Keyan, I quickly called Hospice so that they could help us get her comfortable. It wasn't very long before we had orders from her doctor for some changes they were hoping would help calm her pain down. Our Hospice nurse also said she was headed out to our house and would be here in 40 minutes. We started making the changes and praying fervently that they would work. It is common at the end of life for secretions to become an issue. Our entire team had explained to us that while that rattle is often hard for the families to hear, that it is not generally painful or bothersome to the person who is dying. Keyan was the exact opposite. Because Keyan had a trach all of her life, none of us were bothered by the sound too much, but it made Keyan crazy. I will never know if it was the sound or how she felt but she was begging to be suctioned. The problem with that is it was a case of the more we suctioned, the more secretions her body was producing...it was an endless cycle! So we were doing our best to not suction, but in those final hours, we turned that machine back on in hopes of alleviating her stress. She was struggling to breath and was in pain and it was awful.
By the time Chantel, our Hospice nurse got here, Keyan was resting fairly comfortable again and after making sure things were relatively calm, Paul and I went to grab an hour of sleep feeling like the day might end up being a rather long one. Sleep was hard to find so it wasn't long before I was back up getting report from our friend Debbie who had taken over for our night nurse. It was evident that at this point in the game, we were using everything we had to keep Keyan moderately comfortable and that is a scary place to be since it can get away from you so quickly. Pain management is something that you have to stay on top of or you are chasing it. I put another call into Chantel and told her we were ok for that moment but asked if they could start putting together the next plan so that when we needed it, we would have it all in place. It wasn't long after that that Keyan woke up and asked for her siblings.
Ninety nine percent of the time that Keyan would wake up in those last two weeks, she asked to see her siblings. Occasionally it was Mommy and Daddy or Grammie and Poppie but almost always it was the kids. This time was no different and so we quickly gathered them and the rest of the family up and circled around her bed. The seven of us, my parents, and my brother and his family were all around her. I know that we needed to say some really hard things.
Earlier in the week, when we were really struggling to keep her comfortable, we had asked the minister to come out and pray with us all. Keyan was sleeping at that point so we all gathered in the front yard, our family and close friends, and essentially handed our girl back to God. We thanked Him for entrusting her to us, asked that His will be done but that he take her to heaven quickly. The pastor helped us all to understand that no matter what we feeling, nothing was wrong with any of our emotions and that God is big enough to handle them all...no matter what. Circled up in our yard surrounded by people close to us we released our girl.
Again Saturday night, in the stillness of the late late night, I took the deepest breath I had ever taken and whispered in Keyan's ear, "Honey, you need to stop fighting. I know you know nothing else but to fight but it is time to stop. Rest and let Jesus take care of you." Uttering those words in her ear took more bravery than I knew I held inside of me. I cried through the words and Paul took over when my words were incomprehensible because of my emotions. We laid by her, we kissed her, and we released her so that she would be free.
So mid morning on Sunday when she asked for her siblings and we gathered in her room we all took turns telling her goodbye in our own way. Paul and I talked to her about the movie "Miracles from Heaven," and reminded her of how in the movie Anna went to heaven. We explained to Keyan that it was her turn to go sit with Jesus. Our other kids took turns telling her what they thought heaven would be like. They explained that she could eat ice cream even if it had chunks in it, that she would be able to run without a backpack or wheelchair, she could ride the lions, she would be able to swim underwater with the dolphins, and told her to look for the horse with a rainbow mane. We all told her that we would be alright and that we would see her again when it was our turn to go to heaven. We told her there was no reason to be afraid or worried. We all sang "Jesus Love Me", "Jesus Loves the Little Children", and "My God is So Big." And then we asked her if she was ready for us to leave the room and let her rest. She spoke a quiet and soft "yes" and we all gave her hugs, kisses, and special handshakes. I was the first to leave the room with a peace I had not felt before. I got in the shower and for the first time in weeks didn't shed a tear. It felt good.
Jamahl decided to go golfing, two of the girls decided to go to a friends pool, my brother and his family decided to leave and get some clean clothes at their house and pick up some things that my parents needed. We all felt very calm about leaving and went on with our day. Sidney said that she didn't want to leave the house but tucked herself in her room and lost herself in a good book. The rest of the afternoon was spent with my parents and Paul and I taking turns sitting with her. Her breathing had changed yet again to quick rapid breaths that seemed almost spasm like. It was as if her body was just reacting rather than coordinating itself to actually breath. From the moment we all gathered by her, we never had to change her medications or implement that plan that Hospice had put into place earlier in the day. She rested comfortably. Her soul was at peace despite her body's physical responses. Keyan had spent much of the last two weeks curled up on her side, llama eye mask on and her hand on her head. Her face looked pained much of the time and she wanted to shut the world out. That afternoon she took off her eye mask and didn't put it back on. While Paul and I were sitting next to her bed she even turned herself mostly on her back and crossed her arms over her chest. It caught me so off guard that at first it frightened me but then I just sort of chuckled. Of course she would do what she could to make it easier. I had been worried for days about getting her body into a good position after she passed....and she took care of it. In between times of sitting in her room, I was out in the front yard pacing. Almost yelling at how I didn't understand what was happening. Paul and I had released her back to God, we had told Keyan to go be with God in heaven and yet they were not meeting up! I couldn't make sense of what else needed to happen. It was so confusing and painful. My tears flowed often throughout the day.
It was through the afternoon that my Dad and I were sitting with Keyan and both commented how we felt like there wasn't much of Keyan left in her body and in fact both felt her sort of hovering about three feet above her body. I know that may sound weird but I will not shy away from what we felt. It was a powerful feeling and one that brought comfort to us in those last hours. We could feel her just watching over the room and all that was happening.
My Aunt and Uncle had stopped by and spent some time with us later in the afternoon. We had good conversation and prayer time but suddenly at around 4:30, I felt a very distinct urge to ask them to leave. I hope that I was gracious in asking but even if I wasn't they understood and packed up and left. We were expecting our kids to come back around 6. Earlier in the afternoon, it started sprinkling and then changed to some heavier rain. Because the kids were all doing outdoor activities, just before 5pm, they all converged home earlier than expected and all at the same time. A few minutes before they arrived, Sidney left her room for the first time and came in to be with Keyan. All afternoon, Keyan's body was doing that spasmodic breathing, her eyes were rolled in different directions and her skin coloring had changed significantly since everyone had left...it was perhaps a little frightening and I was rehearsing in my head how to explain it to the kids. But as soon as Keyan heard the kids all coming into the house her breathing immediately changed from shaking her whole body to very quiet, shallow breaths. My Dad stood near her head, Paul and I were sitting by her side, and I quickly pulled everyone else into the room. Her sisters crawled next to her on her bed and Jamahl sat near her. My Dad and I were able to talk to them all about how there was only a little teeny tiny bit of Keyan left in her body and how we could feel her all around us. I had worried for weeks that I wouldn't know when Keyan might take her last breath but there wasn't a cell in my body that didn't know what was happening. She was surrounded by her family, my parents, my niece, and our friend Debbie. She took about four or five more quiet small breaths and then just didn't breath again. The rain had stopped, the sun came out, and at 5:12 pm, Keyan's body gave in to its disease and was still. In true Keyan fashion, she had orchestrated everything and gave us the gift of being with her. It was beautiful and gut wrenching, horrific and yet perfect all at the same time.
So much more to share about the days before her death and the hours after but that will all come later...
