A Shift

Hours before I sat down to write this post, I knew I would entitle it "A shift."  I sat down to actually get my thoughts out through my typing fingers and noticed that my last post was titled, "A shift in Perception."  I had forgotten I had used this title but the irony was not lost on me.  

One of the ways I describe grief, and I am certainly not the first one to do so, is like a wave or perhaps even a tsunami.  Sometimes the waves crash one right after another and knock me down over and over again and other times the swell comes out of nowhere and drags me under leaving me holding my breath desperately hoping I will come up for air.  Worse yet are the moments when that wave of missing Keyan leaves me battered and bruised and I think, "It wouldn't be so bad to not make it back up for air."  Some of the waves are small enough that only ripples are left behind and others turn the ground that I walk on, the sand of life so to speak, completely over and I find myself left with new foundations, new beliefs, new understandings, and new outlooks.  The "sands" are ever shifting.  The shift tonight was a powerful one.  One that I physically felt in both the pit of my stomach and the recesses of my heart.  It actually took my breath away as two quiet tears trickled down my checks.  

Our family was invited to a premiere party for the new movie Jumangi-Welcome to the Jungle.  It was being put on by Hospice of Michigan and was a fundraiser for their pediatric program.  When  I first received the invitation, I had no interest in going and actually just ignored the email.  I had several excuses for not going....it was a school night, the week before Christmas is sooo busy, the weather might be bad and it was 50 minutes away in Grand Rapids, and we didn't have the right attire, it was a dressy event.  I casually mentioned it to Paul certain he would agree and even more certain that it wouldn't even be a conversation.  But I was wrong.  He thought it might be fun, he thought the kids might like to go, and he thought it might be good for us to get out and do something. I couldn't believe it.  I reluctantly responded "yes" to the invitation while my anxiety and fear started getting louder and louder. 

 You see, I may have had some very logical reasons why we shouldn't go, but I had to admit to myself that underneath all of them was one huge reason.  I was scared.  I wasn't sure how being in a room with other Hospice families would feel.  I was terrified that being around the medically complex kids and their parents would make me miss Keyan more that I already do.  I wasn't sure I even belonged with what used to be a group of my peers so to speak.  I was downright terrified that seeing the amazing people who walked those last few months with us and guided us in letting our girl go, would be more than I could handle.  I had NO desire to put myself smack dab in the middle of that pain.  But at a little after 6pm tonight, we arrived at the theater where I had very few other choices but to face my fear.

There was food, and music, and owls and snakes and spiders to look at.  The second person to greet us asked for our names and as soon as she heard we were the Hogans, she said the most kind and thoughtful five words, "Oh, you are Keyan's family!"  My heart opened right up. Those words carried me through the night.  She had said her name, and said it with a smile on her face!  I knew right then that I did in fact belong in that room.  It felt so good to embrace our Hospice nurse and laugh with our social worker who also both took the time to acknowledge the pain of the last five and a half months. I felt like my heart had started to subtly glow, just a little bit under the surface, as we enjoyed the party before the show.  

As we made our way to the actual theater, we picked up our popcorn, got our drinks, found some seats a couple rows up and settled in to watch the show all with relative ease.  And it was about half way through the movie when the shift happened.  I realized with a jolt that I was fully present in the moment.  I was laughing freely at the movie, smiling at my kids laughing at the adult humor in the movie, relaxed back into my seat, 100% enjoying the experience.  That shift brought a shudder to my soul as I realized for the very first time that it had been a very very long time since I was able to be fully present.  I was so programmed to be on high alert with Keyan.  Could she see?  Was she too hot or too cold?  Was she enjoying herself or was she too tired?  Did she need to be suctioned? Did we have everything we would need? How was her pain?  How long had it been since she had had a potty break?  Were we going to be home on time to meet the nurse or did I need to contact whomever was working and see if they could be flexible?  I was constantly checking my watch for the time when I needed to give a medication, disconnect her TPN, or start it back up again if she had been off too long.  I was forever evaluating the room for handicapped seating space and then space for the rest of us.  Juggling Keyan's needs with the other kids was an insurmountable task that I never felt I was succeeding at.  

But here's the thing...my first response to that shift that I felt?  The very next feelings after that joy in my laughter?  It was guilt...huge waves of guilt on top of the grief.  How could I be happy that I was able to enjoy myself without the concerns of Keyan's care?  What did that mean? How could I even think that when so many of my moments are spent missing her or wishing I could have her back?  How could it be ok with my heart to be laughing with no worries for an hour and a half?   What was happening to me?  

Thankfully, I have had some great mentors and therapy on this journey.  I have done a lot of reading and connected with other moms who are living this nightmare and I knew better than to let that guilt wave take control.  I am so thankful that I was able to take a deep breath, name those questioning and nagging thought as untruths and move on to enjoy the moment of being with my family and not having the heaviness of Keyan's care to wade through.  

I hope it goes without saying that I would do all of that care for an infinite amount of time if I got to choose, no matter how fatiguing it was.  I am learning however, that I didn't get to write that part of my story....but I do get some say in how this part goes.  Tonight, for a couple of hours, I basked in the laughter bubbling out of me and my family and in the freedom of there being six of us physically present and Keyan's presence being felt like a giant hug around my heart.  As those two tears trickled down my cheeks I realized that they were tears of sadness and pain but also tears of pride and enormous gratitude.  I smiled and felt so comforted being surrounded by the wheelchairs, and feeding tubes, and beautiful children and families who are living some hard days and I enjoyed the shift inside of me that left me with a different framework..if only for a short time.  This season of Christmas has been so heavy and I have absolutely no idea how I will manage without her...so I choose to think that Keyan teamed up with God tonight to show me that life can be ok.  It was gift from my daughter that I so badly miss but whom is still teaching me and loving me when I need her most.