The Fallout of Grief and Mourning

Everyone knows that continuing on with your life after someone you love dies can be an incredibly hard and difficult road.  Everyone knows that finding your way through the journey is not an easy task.  But it was not until living through the last 51.5 weeks that I understood the depth of what happens while trying to heal.  I loving refer to some of these things as "fallout."  Some of the fallout was what I expected....trouble figuring out what to feed my family and then executing the meal, feeling awkward in social settings, relationships needing to be reworked, the unexpected tears that catch you off guard, the sleepless nights followed by days where you don't want to do anything but sleep, spending money that you shouldn't, loosing yourself in Netflix, the heightened sense of worry, my eyebrows that have gone mostly unwaxed, the gray hair that is appearing, the extra pounds that your body starts storing due to the stress and lack of motivation, the flower gardens that are now weed beds, the pool that doesn't get opened...I could go on and on.  None of these things have been all that surprising.  Grief changes you...it pulls you apart and leaves you exposed..it is no wonder that normal things go by the wayside and your body fights against the pain in it's own ways.

There were also moments over the last year that caught me totally off guard.  One of them happened just his week.  I had to take Abby to the dentist.  A year ago, my Aunt Kim and cousin Erin took the girls to the dentist because we were in the midst of Keyan's last days.  The kids haven't been back since.  I am not proud of that at all but I just could not bring myself to call the office.  You see, two of the dentists hold a pretty special place in my heart for the way they cared for Keyan.  They were always patient with her oral aversions, never "muscled through" or held her down to get her teeth clean, jumped through many hoops to get rights at the Children's Hospital so that we didn't have to travel to U of M, showed tremendous compassion to her and the rest of us, treated her with the utmost respect no matter what she was going through, and have helped our family in more ways than just teeth.  Calling the office and going in meant facing doing all of that without Keyan.  It brought up so much pain that I avoided it for a year.  I put my kids oral health in jeopardy because of the trauma that I would experience.  It wasn't a conscious choice, it was physically impossible for me to face.  It finally got to the point though that Abby's mouth was hurting due to a baby tooth that needs some help and I knew I had to face my fears.  I called Monday morning and within minutes of talking to the receptionist, I was crying...for goodness sake...this is not how I wanted this to go!!!  I took some deep breaths, and continued on saying that I had four kids who needed appointments, giving birth dates, and scheduling.  Just as luck would have it, they had a cancellation for that afternoon to get Abby in.  I was happy for her, and devastated for me.  In the end, I sat in the waiting room with tears running down my cheeks.  Missing my girl so immensely that I could not have stopped those tears if my life depended on it.  I cried most of the day reliving all she had been through with the dentist...all we had both been through and cried with gratitude for the people that cared so much for her.  It was painful and traumatic, but like the last 51.5 weeks, we made it through the pain.  I couldn't help but be struck through by the fact that a trip to the dentist could cause so much hurt.

You see, I had no idea that my mourning would be so full of trauma.  Moments where I physically can not do something.  Going into Target is traumatic every single time....and I mostly avoid doing it if at all possible.  Sometimes, looking at pictures of her is full of pain and I avert my eyes and other times that smiling face brings me so much joy.  I never really know which one it will be.  This year long journey has been one of unbearable agony often brought on by the mundane parts of life. I wouldn't have predicted it to be that way.  I have learned to expect the unexpected but that doesn't change how it all feels.  In fact, I have realized that being in the midst of those feelings, while traumatic and painful, also brings me great comfort. To be absorbed by the feelings of love and loss is perhaps where I am most comfortable being at this point.  Everything else leaves me feeling a little off balance. When I allow myself to be engulfed by the enormity of every feeling that Keyan's death brings, it knocks me off my feet but I land feeling more centered and complete.  Honoring this journey...from the despair to the exhilaration is how I best honor her our relationship.  A year ago today we knew that Keyan was going to die but I had absolutely no idea what that really meant. Today, I am figuring it out one step at a time and even though I would have never guessed this is how it would be, I am grateful to be able to keep figuring it out and to wrestle with the emotions that it brings.

 

 I walked by what used to be one of our flower beds just the other day and some color caught my eye.  I was shocked to see that some flowers had actually pushed through the weeds and were growing despite their less than ideal surroundings.  I ran and got Paul and we started looking and were both surprised to find red, orange, yellow, and purple flowers amid all of the overgrown weeds.  As we were admiring the tenacity of the plants, we were visited by this butterfly that fluttered around and settled on the plant next to us.  Our girl was saying hi, letting us now that she is still right here with us!  Tears fell as I said hello to her and sighed to myself over the beauty.  I feel just like these flowers right now.  I am determined to push through the thorns and weeds that are trying to strangle me.  I pray that I can feel the sunshine despite the darkness that creeps in and I am hopeful that in time, I can blossom and shine no matter what life holds.  Most of all, I hope that I can continue to feel Keyan close to me and that my eyes will be open to the signs she and God send me.

Mother's Day

I have struggled with why this day is so hard.  It just doesn't make sense to me.  I have four immensely amazing children here on this earth with me.  I have SOO much to be grateful for.  But the fact that I have also given one of my children back to God leaves me feeling so much agony and despair on this day.  Once again it is the both/and....it is my arms and heart being so full and yet so empty at the same time.  I have struggled for days trying to get my brain to settle and it wasn't until I saw this picture on my phone this morning that I was able to just be ok with how I was feeling.  It was like an "Ah-ha" moment for me.  Look at Keyan in this picture from Tulip Time 201, click on this grainy 7 year old picture and you will see it too.  This picture is the perfect display of why I feel such a void.  I am not even going to type it out.  My heart knew instantly upon seeing this moment that my camera captured why it was heavy today.  It isn't that my living children are any less special, unique, or loved, it is the fact that she is the icing on our cake.  

The 2nd

Dear Keyan,

Another months has passed.  Today marks 10 months since you died.  My brain still can not quite make sense of this reality.  I move fluidity between denial and acceptance, anger and joy, and beauty and pain.  I miss you, every single thing about you.  I miss your hair, and your little hand that fit so perfectly into mine.  I miss your wit and the joy you added into our lives.  I miss you asking if we had put water on your toothbrush every single time and I miss the toothbrush cycle ending and you pushing the button to go another round...again and again and again.  I miss pushing your wheelchair and worrying that my back would give out every time I lifted that crazy heavy chair.  I miss you whining about getting your hair brushed while you rolled your eyes the whole time I was doing it.  I miss my purpose. I miss teasing you about having pinchers when you were a little crabby or calling your favorite stuffed animal by the wrong name and hearing you laugh over and over again about us not getting it right.  I miss you sitting in your chair or laying in your bed with your iPad.  I miss your breathy little voice behind me in the car.  I miss your love for Maddie and your inability to be gentle with her.  I just miss everything that encompasses you!

It has been a busy month.  Last month at this time it was spring break.  Since then, we have spent a lot of our time at track meets for Jamahl and water polo matches for McKenzy and Sidney.  Sometimes I am certain that you are pushing Jamahl along that track helping him to go faster and I know for sure you are right there in the pool with the girls....Kenzy has scored 4 goals this season and Sidney got her first kick out last week...I know you are helping those shots go in to the goal and encouraging Sidney to take risks even if she gets caught!  Abby has been insanely busy getting ready for the musical. She is so excited to preform this weekend.  It sounds like it is going to be a fun show.  I know you would have loved watching her in her true element.  You always loved her dancing all over the place.  If you aren't too busy I hope that you can catch a little bit of her show.  You will have the best seat in the house!

We started going to a grief support group a few weeks ago.  Mom and Dad are in group with other parents who have had children die and the girls go to a group with all middle schoolers who have experienced a death of some sort.  Jamahl was going to join us but his schedule just couldn't fit it in.  It has been a good place for all of us to know that we are not alone in this pain.  There are other people out there experiencing some of the same feelings we all are.  It is hard to face it every week but afterwards, I am so glad we went.  We got to tell your story last week.  It was impossible to sum up your life and death in 5-7 minutes but your Daddy did a great job and I cried and filled in with some details. There is so much more I want those people to know about you and that will come.  Did you know you are our hero?  Did I tell you enough how amazing you were and how incredibly strong you were?  Did I tell you how much better you made my life? I hope you know and how I wish I had said it more often.

These daffodils are blooming in the sand of your future memorial garden.  Will we ever get it done?  Your Dad has worked tirelessly to have it done in the next two months.  These flowers remind me of you...so stubborn and with a will to live no matter what.  They also remind me that I too can flourish even when the conditions aren't ideal.  This part of my life is not an accident.  Your death is part of my story and even though it is excruciating, it is mine...and I hope to blossom despite the terrain.

I feel a little a lot, lost without you here.  We are staying so busy but I feel so broken inside.  I wish I could express to people how I love love love watching the sports and other life events but at the same exact time feel so much pain over being able to be there or being there without you.  Those two opposite emotions flow through my veins simultaneously most of the time and some days it leaves me feeling a little crazy because I can't make sense of them melding together.  It isn't that I feel one more than the other, it is both joy and agony rushing through me, guiding me, and sometimes leaving me utterly exhausted.  The anguish of living without you for 10 months is just about more than I can bear.  But every time, when I think I can't do it for another minute, you send me wink.  A song, or a rainbow, or a bird, or the color red, and it gives me hope.  Those little things strengthen me for more moments without you.   You show me that you are still right here with me!  I am not going to lie though,  I sure wish you did those things more often.  McKenzy says you are just busy and never really liked communicating all that much anyways.  I will keep being patient.  I know you are experiencing things that I can't even begin to fathom. I know that you are SO much more than good. And Keyan, even through my broken agonizing heart, I can smile because I got to be your mom!  I got to carry you inside of me, and take care of you when this world was so hard. I got to learn all about you.  I got to celebrate your triumphs and pick you back up when you failed.   And I am even blessed to have handed you right back into the arms of God as you went home.  You are light and love and purity and I love that you are ours.  

I love you more than you will ever know,

Mom

Nine Months

April 2, 2018.  It has been 9 months since Keyan took her last breath here on this earth.  In some moments I can not believe it has already been that long and in other ways, I feel like an entire lifetime has passed since I last saw her, heard her voice, felt my lips on her soft skin, or held her hand.  This winter has also been a winter season of my grieving.  The days have been long, dark, and dreary and then just like the actual weather, there are days where I can feel the sun and the renewing hope of spring coming.  My brain still plays tricks on me and it is often hard to actually believe and understand that our daughter is actually dead and not coming back home.  Just a few nights ago, thru my tears in the dark of night, I decided that maybe it was time to just give in to those moments of not believing.  That somehow, my brain knows when I need the break from the reality and if I just let myself give in to blocking it out for a few moments, that maybe surviving some of the other moments will be easier....I will keep you posted as to how that works out for me!

It was Easter yesterday.  Keyan always loved hunting for her eggs both inside and outside and despite not being able to eat any of the candy, she always loved seeing what the eggs had inside of them.  I could not be at home doing the same traditions as before because for me, that just screams her absence.  So, we convinced my family to get out of town and do something different.  We had our big "Easter" meal on Saturday evening with a candle lit in memory of Keyan and then spent Sunday just being together.  There were tears, stories, laughter, more tears, and lots of talking about the missing piece in our hearts.  It was comforting that all of the adults felt like "It just shouldn't be this way!" It is always good to know that I am not the only one missing her.

Both yesterday and today, right as Paul and I were talking about her and sharing the intimate pain of being parents who walk around feeling less than whole, a beautiful fluffy cardinal flew to the bushes right outside of the window.  It looked a lot like Keyan's furby that she so loved!  I know it was her telling us that she hasn't forgotten us.  She sat right in those bushes and let me walk right up to the window.  She cocked her head back and forth and looked at me while I was taking pictures with tears streaming down my face.  Paul just sat quietly shining his own inner dialogue with her.  And then later in the day, she sent a rainbow! Her sisters love when rainbows appear.  They all feel her a little closer at those moments and we all know how good that feels!

And before you all think I have totally lost my mind and gone crazy from this grief, I am fully aware that this is a male cardinal...and I called it a her.  I truly believe that Keyan sends us signs using many different things but nature is definitely one of those ways.  Whether it is cardinals, rainbows, strange behavior from our electronics, songs, or a multitude of other things, she makes sure to pop in and let us know that she is good.  It always makes my heart beat a little stronger, a little more assured, and I cant help but smile.

So, nine months into this horrific journey of loss and I am still feeling so incredibly lost without my Keyan.  My life looks so immensely different than it did with her here.  That brings some peace and some despair.  But nine months in and I can laugh without much guilt and I am living this life...this life that I would never choose, but living it the best ways I know how. Focusing on the fact that she is not suffering and is full of peace in the company of Jesus.  Holding on to the hope of being reunited with her someday.  Loving when she "visits", and continuing to allow grief to be my teacher.

Eight

March 2.  Eight months today.  Keyan died eight months ago.  I have moments when the anesthesia and auto pilot wear off and those moments can be brutal.  Pain is always the strongest as the numbness begins to fade.  That is where I am right now.  Settling in to the pain, working on being kind to it, working on getting comfortable with it because I can not change it.  As the pain begins to push its way through my fog, I am forced to revisit some moments with Keyan that until now my brain has dulled and kept the details blurry.  My minds lense begins to focus more and more and I ask myself heavy questions.  

• "How in the world did I ever turn to the driver from the funeral home, our gentle giant,  and tell him we were ready to take Keyan's body out of our home?"  
• "How did I stand in a circle in our yard with our pastor and family begging God to end her suffering and take her to heaven?" 
• "Why did I not throw myself on her body refusing to let anyone take her from me?"
• "How did I stand in the back of the gymnasium on the day of her funeral and physically close the lid to her casket?"
• "What was wrong with me that I could willingly watch the hearse drive away that day?"

Eight months ago, I had no idea how today would feel.  I had no idea how painful this world would feel despite having so much to be grateful for.  I had no understanding of how that day, and the 12.5 years before it, would leave me feeling so empty.  I had no idea that my hands would physically hurt without hers to hold and that my brain would continue to play tricks on me...convincing me that she would soon be sitting on her shoe bench once again.  Eight months ago I never could have imagined the ache and the hollow look in my eyes or the fear that comes from having your sense of security shattered. I could never have dreamed that I wouldn't want to be alone and yet feel so inadequate around people.  

Eight months in and I find myself in a new phase of grief....one that I didn't know existed.  One that takes so much work to move through and one that brings almost a new sense of loss.  The magnitude of the trauma is starting to sink in.  Life for most has gone on and even mine keeps moving through time with a lots of life happening.  But the longing in my soul to touch her hair, hear her voice, look into her eyes, disconnect her from her tubes, and just soak her in is ginormous and fights to be all consuming.  I have learned that I have to focus on the present moment at all times. If I think about "what was," the heaviness gets more burdensome and if I think about living the rest of my life without her, I can't breathe, so I stay right here, right now until I can return to the safe and sacred places I have created for myself.  Certain people, certain places, and sometimes just certain times in my day when I am ready and wanting to feel it all. I start to crack the door on the past and begin to make peace with the days that lie before me.  It is the card that I receive in the mail once a month from a friend reminding me that she cares, it is the meal that is brought every Tuesday by another friend to lessen the burden, it is the texts, the messages, the hugs, the tears that are shed both with me and for me, and oh so many other things that get me through.  Because despite my resistance, this eighth month will march on dragging me with it....with all of its highlights and pain.  

Today, the sun is shining, I have had the privilege of being able to speak her name, spend time in her room, and feel her presence near.  I have laughed about her and cried over her.  I have held space for all that this journey entails because it is my journey with her.  

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.

A shift in perception

A year ago today, I posted the following on facebook....  

It has been four years today since Paul and I sat across from our doctor in Cincinnati and he gave us Keyan's diagnosis of neuropathic dysmotility. We had been on a mission for years to figure it out so as hopeless as it seemed, we also felt a great sense of relief to know what we were dealing with. At that point, we made a move towards comfort care and giving Keyan the best days that she could have every single day. 

In recent months, Keyan's days have been hard...filled with pain, gagging and great fatigue. All that we thought to be normal has been disputed. Comfort care has taken on a whole different look.... one that I wasn't prepared for and one that has caught me off guard. Her doctor and nurse in Cinci say that this is how this disease progresses and that we should slow her days down in order to preserve her strength, energy, and reserve. I find myself at odds with that because we have done everything in our power to keep her woven into our busy lives but it is apparent that her body can't withstand that right now. It is so hard to wrap my head around her limited ability to interact with "life." However, as I look back at the last four years....and really the last twelve, I know that we have done everything humanly possible to give this little girl an amazing and full life....and I won't stop now, even if it looks different than it has in the past! 

That day four years ago cemented our desire as parents to never be selfish with the number of days that we have Keyan but rather be incredibly grateful for the gift of her joyful spirit every day. I am so thankful to have been shown that lesson even if it breaks my heart some days. Here's to staying strong in the dark moments and basking in the warmth of the beautiful ones!

Today obviously marks the five year anniversary of us sitting in that office for 2.5 hours across from a man that had spent over a year trying to figure out what Keyan was suffering from.  What strikes me today in the midst of my pain over her death, is the incredible amount of foreshadowing this post contains.  My life with Keyan looks a whole lot different today than it did when I wrote this post a year ago.  I remember my heart being in so much pain that her body was failing and that she couldn't keep up with us in the same manner than we had become accustomed to.  A year ago, her pain was never ending, she suffered from hour long gagging episodes several times a day that we couldn't relieve and she slept so much.  Today, she is free from that pain.  We honored her body in the most sacrificial way a parent can.  Comfort care has once again taken on a whole new look.  What I wouldn't give to be doing the hands on part of that care but she deserved better days that I could give her here on this earth.  Our desire for years and years had been that we not be selfish....that she had the best days possible to the best of our ability.  And today through tears, I can say that we have now given her the very best days...even beyond what I can comprehend, for eternity.  I am so grateful for the joy and love that she showed us and I am now embarking on a journey to learn that that doesn't stop just because I can no longer touch her.