And away they go...

The air was thick in our house this morning as everyone was feeling so many things.  Plenty of nerves, some excitement, a little grumbling about summer being over, and lots of last minute big brother advice.  The girls have walked thru their schedules numerous times, met their teachers last night , and meticulously planned what to wear for the first day of their freshman year.  Jamahl went to water polo practice instead of walk thru night, made sure he had a few school supplies ready, and picked out his favorite swim shirt....ready to start his senior year!

At least there were smiles all around!!!

Look at those HUGE backpacks.....full of everything they need for a day of school, sports, and other after school activities!

Dear God,

These kiddos are such a treasure...thanks so much for giving these specific kids to us.  We have had a great summer with lots of laughs, growth, college talk, a little bit of traveling, and lots of sports.  It went way too fast but we have tried to soak it all in.  As they head into this school year keep them safe.  Give them people who reach out to them, even if just with a smile and put the right people in their path to encourage and guide them.  May they look out for the kids who need a friend or don't have anyone to sit with.  Help them be brave, less anxious, and to build relationships that help hold them up.  

I know it goes without saying God, but please give our Keyan an extra hug from all of us today.  Milestones like these always make the emptiness a little more tangible and we are all feeling it.  We know she would have loved so much about going into high school but there would have been so much hard for her too.  All of us are thankful that she doesn't have to face the hard stuff any longer but what we wouldn't give to see her red wheelchair in those hallways.  She is missed in such ginormous ways God, please help ease that pain for us all today.

So much of my heart is in that van...all together heading off for new adventures!  Here is to a fantastic year!

July 2 Eve....

Today is July 1.  I am sitting out on Keyan's deck taking some time to just be.  The pool is circulating,  our resident bluebird pair is busily flying in and out of their box talking quite loudly to one another. There is some construction noise coming from the neighbor's project.  The furniture is still damp from the morning dew.  The sun is trying to peek through the clouds and there is a gently breeze causing the wind chimes to just lightly sing.  I sense all that is around me, I hear it, feel it, and see it, and yet it is all in the background of what my brain demands of me.

Tomorrow marks the two year date of Keyan's death.  July 2 looms in the shadows starting somewhere in late April or early May and starts coming towards the forefront early June.  By mid June this year, the thoughts revolving around July 2 were screaming at me much as they are this morning.  I sat with those screams for a long while before I could put words to what was going on.  Our family was gifted an incredibly beautiful and yet heart wrenching last two weeks with our girl.  For those last two weeks, we spoke truth about what was happening, we set intentions to understanding that there were going to be no do-overs, we held vigil for hours and hours on end, we were surrounded my our most intimate group of family and friends, we swam, we made ice cream, we played basketball, we went to sports practices, we laughed, we cried, we screamed, we sat silently in disbelief.  We made sure to leave nothing unsaid, we honored Keyan's need for low stimulus and yet gathered around her the moment she was ready for any company.  We read to her, we helped her to the bathroom, we suctioned her, we sang to her, we held her hand and comforted her, we prayed that God would take her into His arms and bring her Home.

Look at the smiles all around! We were soaking her in and cementing her into our hearts.  It was amazing!

It wasn't just about July 2.  It was all the days, months and years leading up to that moment on that Sunday evening when she just didn't take another breath.  My brain has spent the last weeks replaying  all of these moments in the hope of making sense of them.  I am trying to make peace with watching one of my own, whom I fought for with every fiber of my soul, leave this earthly life.  The past several weeks have been full of fatigue, tenseness, sensitivity, confusion, not much motivation, and an unsettledness to my very being.  But why wouldn't it be that way?  We love Keyan will all of our selves so why wouldn't every part of us hurt in some way.  Just a couple days ago it finally clicked for me.  It isn't that July 2 was the only day.   It is all of the small moments beforehand too.  It is the excruciating decisions, the memories, the lifetime of smiles, the joy that she brought and the fullness that she added.  It is no wonder life feels messy in June.  It is the price we pay for the gift of those two weeks and really the gift of her life.  

Tomorrow, July 2, will come and go.  We will forever miss her and forever be grateful for those painful two weeks and the too short 12.5 years.  We are honoring her life with ice cream tomorrow.  It was the last thing that she tasted here with us...homemade mint chocolate chip.  I am sure the day will be messy...lots of emotions, lots of tears, and lots of laughs too because that is how Keyan lived her life...accepting of it all no matter what.  

Time doesn't stop

18 months....a year and a half.....547 days...and I could easily calculate the minutes, seconds, etc.  It feels like millions of breaths and endless nights since Keyan took her last breath.  Time has inevitably marched on and yet feels like it has been standing still.  I can not fathom how I have survived this long without her physical presence and still my brain struggles to face the reality.

  

Standing in the shower Christmas night with my tears streaming uncontrollably, I leaned my head on the shower wall.  It took all of my will not to start banging my head against that wall over and over again while I begged my mind to accept her death, while I willed my brain to just come to terms with it, while I fell to the shower floor gasping for breath through my sobs, pleading with myself to understand that her body is no longer here.  

Even stranger to me is that I also have to convince myself that she actually existed.  It's a twisted game your mind plays on this journey of grief, an endless cycling of questions and a need to make sense of it all.  I never dreamed I wouldn't comprehend the death of my own child.  I never imagined the complexity and the selfless love it takes to not only hand her back to Jesus but to renegotiate my relationship with her.  Choosing to really live after the death of my girl has been a choice that I sometimes have to make several times a day.  To keep breathing, to laugh, to cry, to feel pride, to feel pain, and everything in between takes a measured amount of effort when you are walking through fog.  As the numbness wears off and the reality sets in everything feels more poignant.  I could never have predicted how the pieces of my heart would continue to shatter 18 months later but I do know that I will not give up.  I will make her proud, I will carry on her legacy and every minute that I do, I have the hope of being one more minute closer to wrapping my arms around her again.

Dance Lessons....

Paul and I had our second ballroom dance lesson last night.  I wanted to share some my observations so far about this endeavor.

1. I realized over the last two weeks how little Paul and I actually look at each other.  We talk a lot, we share the same space a lot, but we are often busy with something else.  Dishes, laundry, cooking, kids, phones, work, the dog, you name it, we carry on our conversations in the midst of getting everything else done.  Even if we go to diner with just the two of us, there is the server, our meal, and plenty of other distractions to avert our attention.  That is not the case in dance.  When was the last time you spent the better part of an hour holding hands and looking into the eyes of your partner?  Our society moves at such a fast pace that we have lost the art of eye contact.  Did you know that in dance, eye contact between partners helps ground you.  When Paul lifts his hand and I spin through it, maintaining eye contact with him is what brings me back to the right spot. How powerful is that?

2. I underestimated the benefits of having something to look forward to that is just for the two of us.  My days, like most parents, are full full full.  Running kids around, getting to all of their activities, keeping the house from imploding with laundry, feeding this crew, volunteering, etc.  I pour myself into my children but the harsh truth is that I rarely reserve time for Paul and I.  We try....we really do but life happens and we skip over "us."  It felt really great to know that we had 60 minutes set aside for us and it was something besides therapy!  It gave us something to talk about, anticipate together, and keep us moving toward the goal of just making it to dance on Wednesday!  It was invaluable at a time where a lot of life is hard right now.

3. Human connection is healing.  In the first week, we moved from level one which is holding hands, to level two which is holding hands on one side and on the other side our arms are connected at the forearm.  Week two we graduated to level three...holding hands on one side and then he has his other arm around my waist and I have my other arm up by his shoulder.  In other words, we moved from 8-10 inches apart to 4-6inches.  Now, for a person like myself with personal space issues, this was exceptionally challenging.  It was apparently even noticeable to the instructor that I preferred the other levels.  He promised me I would learn to love it and asked me just to trust him.  I found that if I could settle the voices in my head, take some deep breaths, maintain that eye contact, and relax into the safety of Paul's arms, it did actually feel good.  I am head strong, stubborn, and can be fiercely independent so needing to rely on Paul is a great lesson for me and one that by the end of the hour last night I was able to do a little easier.  

4. There is beauty in being able to laugh at our mistakes together, smile through the moments that actually go right, dance to our wedding song, and hold space for our relationship.  How quickly we shove those things to the side to get through our to-do list!  I knew that dance lessons would challenge me physically and mentally, but I never dreamed that it would challenge my trust, my instincts, and some of my inner most struggles.  

So, here is my challenge to you....spend just 10-15 minutes sitting across from the significant person in your life.  Sit so you can reach out and hold both of their hands, don't fill the space by talking,  just breath each other in.  Can you do it?  For some of you, you are longing to be seen....and others of you might be the one that needs to open your heart and do the seeing....maybe it is a little of both. Try it, make a habit of it, and maybe you will learn something about yourself and that person you love so much!

Sixteen months

The house was full of its usual evening noises.  Homework being finished, the TV providing a few minutes of brainless entertainment, evening snacks, and the typical mid-week chaos of a busy household.  I could hear it all in the background but my ears felt like they were being pierced with heavy silence. I paced through the house trying to distract myself with dishes, counter tops that needed wiped down, the ever present laundry, turning lights off....anything to quiet the panic that was rising in me.  

The day had been especially difficult and now that night was settling around me I could feel myself sinking into that familiar wave of sadness.  But this wave was bigger, darker, more powerful, and terrifying.  My pacing was not working and I suddenly found myself in the bathroom.  I quietly clicked the lock into place to ensure no one would walk into my black pain.  I needed some privacy...I needed a few minutes to myself to breathe and get my emotions under control.  I leaned my head against the wall and the tears that had been silently accumulating behind my eyes all evening came crashing over me.  

My body slowly slid down the wall and I found myself curled up in a ball on the bathroom floor.  The pain of missing Keyan was more than I could take.  At that moment it was a physical pain like I had never felt.  It was rising up from my depths like hot lava. The memories of my girl were burning my heart in my chest.  All of her suffering, all of her joy, all of my days fighting for her, all of the days I have lived without her physically here....it all weighed me down with an intensity I had not experienced until that moment. My jaw clenched over and over with panic.  I silently screamed while wrapping my arms around my waist trying to stop the ache.  

I could hear my family beyond those four walls but I had never felt more alone.  As my forehead felt the coolness of the laminate floor, my thoughts turned quickly to "I can't keep doing this!  This pain is going to kill me. I need it to stop.  How can I stop this despair?  Please, someone, help!  I can't keep living this way."  Inside my head, I begged, "Someone put me out of my misery!"  For the first time in my life, I looked for a way out.  I thought of the alcohol cupboard in the kitchen and wondered if I could drink myself to a point that I could forget my despair?  Was there any sort of medical drugs left in this house that I could swallow by the handful to end this nightmare?  If I made just a tiny cut somewhere on my body would the pain flow out of me instead of continuously swirling around inside of me?  My tears puddled on the floor as I contemplated finding a way to be reunited with my daughter. 

I turned on my back, looking up at the ceiling and begged God, "For all that is good on this earth and in heaven, please do not make me keep doing this!"   I closed my eyes and envisioned being released from my anguish.  My throat was raw from catching my sobs and my tears now stung as they continued to fall.  I laid there contemplating my options and sorting out my thoughts.  I realized that it isn't just the torment of being away from Keyan's body and personality or the agony of missing her little voice in all the craziness of our family.  It is also me...it is my uncertainty of who I am. 

It is feeling like a foreigner in every aspect of my own life.  It is the brutal reminders of what was and the ever present questions of what will be.  Keyan's death has turned my very existence into question.  I am having to learn how to live without her which means figuring out how to live all over again.  

In this past month I realized how much I normalized the life we led with her for 13 years....and am also now realizing that there was nothing "normal" about it.  It was our normal, and we did the very best to embrace it and live it fully but on this side of Keyan's death that means learning so much.  I have to learn how to be home alone in my house.  I have to learn how to be a sports mom... and how to handle the teams loosing or my kids not playing.  I may have been physically present at as many sporting events that I could get to before but my mind was always busy with Keyan and if she was ok.  I have to learn how to be home entire evenings with my family without the distractions of a nurse  coming in between 7-8pm.  Is it ok if we are all doing our own thing?  Should we be doing more as a family?  Maybe we need to play a game or go somewhere?  These are the thoughts that consume my brain now.  Without having to be a constant caregiver, I am left to figure out my purpose.  Figure out how to finish a fight with my husband instead of avoiding it due to Keyan needing something.  I have to figure out how to walk down the street without pushing a wheelchair...it feels strange and empty.  I have to make something of this mess!  It was during the lowest of any moment yet that I settled into the fact that right now, it might just all be a mess and that is ok.  

My thoughts quieted a bit and I could hear my kids doing life on the other side of the walls.  I sensed the truth that I was not alone in this.  Paul was out there living some of these same realities.  He is the only other person who was with me when Keyan took both her first and last breaths.  Moms and Dads all over this world have to learn to live through the pain of having a child die.  I know several of them in fact.  Learning to keep on keeping on is not an end result or a destination but rather a choice, a journey, a quest.  

Listening to the life happening around me, I knew I couldn't be the cause of additional hurt for my family.  I knew that I could find the strength to get off the floor and give goodnight kisses and hugs to the people who need me most right now.  My purpose is still found in my family....even if it looks and feels so different.  A little while later I crawled into bed exhausted and weary but thankful for the fortitude God has given me to face this mess and embrace it.

The craziest thing to me is that this event that I describe here was just a few weeks ago.  The time between month 15 and 16 has felt like an eternity.  I expected to feel this depth of pain during the first year, but I never imagined it would come after that.  The shock is wearing off and we are all realizing that this is real and this is really our life now....the good and the bad, the beauty and the horrific.  I am fortunate to have people who support me, an amazing therapist that helped me find my way even further away from that very dark place the next day and evaluated my overall well being.  I am fortunate to have the where-with-all to know that suicidal thoughts can come in this terrain but that I have a bigger picture that just this despair.  I know not everyone makes it off the floor. 

The grief is absolutely brutal right now. It doesn't let me up for air very often but I am eternally grateful that I have places to turn and people to cry out to.  Sixteen months since I felt the warmth of Keyan's body fade.  Sixteen months of tears and healing.  Sixteen months of navigating the new.  Sixteen months of searching for the hope, and sixteen months of feeling the mess.  

The Inspirational Whale

Tahlequah, a name that most of you have become familiar with over the last few weeks.  Or maybe you know her by her more official name, J35.  She is the mother orca whale who carried her baby's body with her for at least 17 days after it died shortly after birth.  It was a public display of grief that many in the world watched in awe and amazement as she pushed the body day in and day out.  News networks, scientists, grief therapists, psychologists, and many others all watched in wonder and reported on her journey day after day.  It was a hot topic on social media for a couple of weeks and even I wrote a quick fb blurb about this mother.  The world watched and waited to see how long she would endure.

I can't help but write a little more though.  Tahlequah made me do a lot of thinking.  I know her pain and understand to my core why she kept pushing her baby toward the surface of the water.  I feel her broken heart.  I sense her soul hoping that just maybe the next push up might bring breath back to her baby.  I know the inability to make sense of never touching your child again.  I watched in envy as she defied the social norms of grieving and did what she felt was right in every cell of her body.  I get it.

I have not been shy about saying that my brain still struggles with how in the world I ever let the gentle giant from the funeral home drive away from our house on the night Keyan died.  How did I willingly tuck her body and blankets into the body bag on the gurney on our porch and let him zip it shut?  I consider our family some of the lucky ones.  We had a little bit of time to know that her death was imminent.  We had time to discuss our wishes and figure out what would bring us the most comfort and peace.  We had family and friends and hospice people to guide us in following our hearts.  We were not rushed at all....and yet every minute of the time between her death and the removal of her body I knew the clock was ticking.  I knew that we would have to let the funeral home take her physical body.  Through bathing her, and dressing her in the craziest outfit her sisters could find, and brushing and braiding her beautiful hair, removing her trach and doing what needed to be done for embalmment, and those final touches filled with both laughter and tears, we all knew that the moment would come where Paul would pick her up and carry her out of our home. Did Tahlequah know that too?  Did she know that she would eventually have to let her baby fall into the ocean?  Was she just trying to figure out how to stop herself from diving down to retrieve the body? We will never know but I can tell you that is how I felt.

Those days in-between death and the visitation were so confusing for me because I didn't know where her body was.  Paul and I sat in the funeral home the day after she died, my birthday in fact, to sign all of the finalizations and I cried tears of panic because I knew she was somewhere in that building but I had no idea where.  It was terrifying.  The morning of Keyan's visitation we had a private viewing with just family at the funeral home.  I dreaded it with everything in me.  As we walked up to the room, the doors were closed and the funeral director gave us a mental layout of the room so that we knew what to expect.  Paul and I wanted to lead our family in so we grabbed each others hands and pulled the doors open.  My eyes quickly scanned the room to find her and I let out an audible sound when I finally found her.  I had been so frightened of the moment, but all I felt was relief and joy.  "There she is!' I said as I pulled Paul closer with my quickening pace.  All felt right in the world for those few moments.  I knew where my baby was.  I could breath a little deeper.

For me, part of my grief work has been coming to terms with how I didn't put up more of a fight when her body left.  Why didn't I lay across her body and scream, why didn't I just keep her longer?  In spending time with these questions, I have researched how other societies around the globe deal with death.  Many do it a little more heart led than we do in this country.  One remote people group keeps their loved ones bodies with them until they can afford a funeral which can sometimes take months.  I know that sounds like complete insanity to those of you who haven't lived through this but when I read on these customs, I couldn't help be think how much easier the transition might be if that was my norm too.

My research also lead me to a family here in the United States who brought their son body back to their home.  They took care of their son's body while they built the casket.  The mom spent hours holding his hand.  After the casket was done, they all went to the crematorium together and waited for the cremains.  They walked the whole journey together and never had to leave his side until they were ready....much like that mother whale.  I will let you in  on a little secret....it's probably a good thing I didn't know this was legal....I think it might have been a little much for my family...but I sure would have tried to convince them!  I wish I had known.

The world quickly became familiar with J35.  Embracing her journey of pain and moving back to allow her to do what she needed to do. Members of her pod even helped her in her efforts but also seemed to know when to just surround her and let her feel. The whole thing was a thing of beauty and grace.  We all found ourselves empathizing with Tahlequah and learning about her pain.  I urge you to do the same around you.  Look for the Stephanie, the Ann, the Michelle, the Jessica, the Paul, the Karen, the Tom, the Erika, the Karisa, and the countless others...I could go on and on.  There are people in every community who are swimming through the waves of mourning and working on releasing the pain... moving towards healing.  Know them.  Support them.  Reach out to them in ANY way.  Speak their child's name.  Listen to their stories.  Surround them with love.  Smile. Ask how they are.  Become familiar with both their pains and joys.  If this world can follow a whale, I know we can do even better for each other.  

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.