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.

Birthdays

In the last week we have celebrated some monumental birthdays in this house and in the middle of the birthdays it was Thanksgiving.  It has been a whirlwind of a week with so much excitement but also tempered by the fact that these are the first birthdays without Keyan here with us.  To say the days have been hard would be a gross understatement.  However, with much prayer, lots and lots of tears, several sessions with our therapist, and some survival guide books, here we are.  We may not be standing tall or even standing for that matter but we have crawled to this "first" finish line and have somehow crossed it.

Today was Jamahl's day.  Jamahl was born into our family 16 years ago right on his due date.  Paul and I had faced a couple years of infertility and loss and the images of the two of us laying in bed with tears streaming down our faces over the questions of how we would become a family are never far from my mind.  Jamahl was God's answer to all those questions and boy did He bless us with an amazing first born.

Jamahl can be quiet and enjoys observing and analyzing the world around him,  At home though, he often lets his hair down so to speak and is prone to loud outbursts, even louder dance moves, and definitely takes up his share of the space around here.  He lives for rising up to the challenges put in front of him whether that be in the classroom, in the pool, or on the track field.  He is humble, and I pray he always stays that way.  He loves helping the underdog succeed and is mindful of what other people may be dealing with.  He is funny.  His love for sports and sports statistics can drive people crazy and yet he knows what he is talking about...and not just for the New England Patriots.  He is wise beyond his years.  He is a great big brother and takes being surrounded by all of his sisters in stride...but he also knows when to retreat to the basement to grab some solitude and some video game time.   We could not be prouder of who he is and who he is becoming.  He has some crazy dreams and aspirations and I can't wait to see how they all play out.  But, he can take his time because the thought of him not being in our home everyday makes me tear up every single time.

Last Tuesday the girls turned 13.  Holy cow that seems impossible!  I remember everyone teasing with us when the girls were babies about the teenage years.  People's eyes would sort of sparkle as they tipped their head back with a laugh..."All those teenage girls...oh my!" And yes, there are days when it is exactly how many people predicted.  Life can be a rollercoaster of emotions and drama but it is also rewarding to walk with the girls through this part of their journey.  Seventh grade can be hard and we are honored to support them through life's ups and downs.  The land between kid and teenager  is confusing and they all flop back and forth leaving the rest of us to catch up, but again, I am in no hurry to have that kid-ness be gone.

McKenzy has a beautiful and caring spirit.  She worries about everyone around her and wants everyone to feel loved and supported.  She misses her sister Keyan in ways that the others do not and that has led to some struggles for her.  She is living life so bravely and continues to talk and walk through the pain.  Our Kenzy has a laugh that is contagious.  It has always come right from her belly and she continues to make us laugh with her crazy personality.  She loves her Daddy more than anyone in this world and beams from the hugs and love she gets from Paul.  She loves exotic foods and is happiest when mom cooks from scratch.  She loves to put unique outfits together and always looks so cute in them.  Kenzy loves to draw and be creative.  She uses art to express herself and make others feel good. McKenzy is an "all-in" girl.  She isn't gong to do anything until she is certain that she can do to a level of aptitude that only she knows.  She is on the middle school swim team and even though she fought us tooth and nail before the season started, she has overcome fear after fear and is turning out to be a decent little swimmer!  My heart about exploded with pride the first time she dove in and raced her first event and I had tears running down my face as I watched my girl who is often so overcome with lots of hard emotions throw her hand in the air and jump up and down when the team won their first meet.  She was overjoyed!
McKenzy Faith, hang on honey....this word will make more sense eventually and I hope you always feel mom and dad right beside you supporting you through it all.  Continue to be kind and do the right thing...I promise you it will pay off.  You bring us so much joy and make us so proud to be your parents.

Abagayle has always danced through life with a song in her heart and that hasn't changed.  She wants everything to be fair and will stand up in the face of many odds to make sure it remains that way.  She loves fashion and can often be found in the craft room turning recycled goods into doll items for designing and making clothes for her American Girls dolls.  She oozes creativity in a way that if I am honest, I don't even fully understand but it just comes from inside her and it is amazing to see what she comes up with.  Abagayle swims on the swim team too.  She is all heart and not necessarily a lot of athletic ability but that never stops her from diving in and swimming whatever race her coach asks her to.  In the sea of black bathing suits and black and white caps, you just have to look for the girl who is dancing to the music or prancing across the pool deck and you have found Abby.  While she enjoys being part of a sports team, she shines brightest  in the choir room and is loving being part of the honors choir this year.  Abagayle expresses her emotions very easily and when it comes to missing Keyan she is not afraid to talk about her, cry through her hurting heart, and is often the first one to bring Keyan up in a conversation.  Abby embraced Keyan's last months with us in a way that was an exact mirror of her heart.  She was never afraid, never backed away from loving on her sister and spent hours curled right up next her her in Keyan's final days.  We all learned some things from Abby and she continues to teach us to be true to who we are and what we are feeling.  It was a privilege to watch her.
Abagayle Grace, your smile lights up the darkness time and time again.  You are a fiercely strong individual and never back down from what you think is important.  Keep that playlist going inside of you because it grants all those around you a peek into your heart and it is beautiful!  We are so proud of you!

Sidney continues to be our quiet girl unless you have her one-on-one.  She looks up to her brother and has even started watching football with him.  Sidney has grown into her own so much over the last year and is beautiful in every way.  She is a natural athlete and feels so much pride in overcoming her nerves to be able to be back in the pool swimming competitively.  She asks Jamahl to analyze her races but only half listens because she thinks she has it all under control!  Her sense of humor is starting to come out more and more. She is quick witted and her one liners keep us laughing.  She is enjoying wood shop and learning how to use all sorts of different tools.  Most dinner conversations involve the ins and outs of her current projects. Sidney loves to read and if she doesn't come when I call her, I know to look up in her bed where I will inevitably find her lost in the world between the covers of her latest book, tuning the rest of us out.  Sidney is a conscience student and strives to do well.  She grieves her sister in the same quiet manner that she approaches most other things.  You can see there is always so much going on in her head but getting her to let it out can be a challenge.  Sidney always felt Keyan's pain very physically in her own body and she is the only one that Keyan has come and visited in her dreams.  I will never forget Sidney shaking with the realness of that nocturnal visit.   She finds comfort in journaling like her mom and is often the first to snuggle up next to Paul or I and just be by us.
Sidney Ann, your quiet spirit bring so much to our family and I am so thankful for what you teach me by your stillness.  I love watching you take more risks and trying new things.  You are an amazing competitor not only in sports but in life and that will serve you well.  Keep that sparkle in your eye and soak in the world on your own terms.  Dad and I are so proud to call you ours.

And that leaves Keyan....never out of my mind and always taking space in my heart.  Keyan, you couldn't wait to turn 13.  You thought is was so funny that Dad and I were going to have 5 teenagers.  While we did not get to be with you physically on your day, I know you had one heck of a party with the angels and unicorns and am certain that you had ice cream with chunks and swam with the dolphins.  Keyan, you are joy and quirkiness, a force to be reckoned with and a personality much bigger than your little body.  You always took life in stride and were happy no matter what.  The life lessons that you taught us as your family have forever changed us at our core.  Throughout your life and even in your death, your fighting spirit never left. We always knew that you were an angel living among us and while I was not ready for you to leave, I didn't get to write that part of your story.  I miss you with a depth that is unexplainable.  It still takes my breath away on a daily basis.  And while my memories of you come along with so many emotions, they also keep you alive in my soul. Your Dad and I are incredibly proud to be your parents and thank you for every minute you gave yourself to us...always so fully and without reserve.  I hope you saw all of us standing out on your deck and heard all of us singing "Happy Birthday" to you that night...even though we messed up and sang the wrong version at first!  At least we got it right eventually.  I am sure you were up in heaven rolling your eyes, laughing, and shaking your head at your crazy family.  I hope that you heard the messages that we all left you on the lantern...Jamahl did a great job reading them out loud to you and we watched that lantern soar high into the night sky until we couldn't see it anymore.  We love you and I promise to keep your memory alive.

"Wonder"

Paul and I took the girls to see the movie "Wonder" today.  Several years ago, we all read the book together before bed.  We all fell in love with Auggie and his family and of course the message of the book.  I won't go into either the movie or the book anymore because I certainly don't want to spoil either of them. I will say, read the book and take everyone you know to the movie.  Life lessons abound that young and old can be reminded of.

This afternoon I started crying about 10 minutes into the movie.  The family is sitting around the dinner table and near the end of the seen, mom, dad, and sister end up tickle attacking Auggie.  For me, the movie felt like it was in slow motion for a few minutes and my breath caught in my throat.  No one else would start crying while the author is just introducing us to the family and showing us some of its dynamics.  But my world stood still for a moment as I focused in on the joy and laughter on everyones faces.  It struck me....this is what is missing.  This is precisely what we lost.  When Keyan died, our family lost its "Wonder."  We lost our sun to orbit around and it feels as if our whole universe is off kilter.

Keyan was joy.  And her quirkiness kept us all laughing.  I know full well that it is easy to perfect our loved ones memories after they die....not many people speak badly of someone after they have left us, but I am here to tell you, Keyan was truly a bright spot in our lives.  I can count on one hand the times that she was crabby and we all laugh at the two times when she got a little mouthy with mom.  Her disease was a ton of work, but SHE was easy to love and take care of.  Her OCD could drive a person crazy but she never had ill intent.  She made us smile, made us see the world differently, and made us better people without even trying.  We are lost without our sun, without our center, without her gravitational pull that kept us all circling around her.  Our lives literally revolved around her and our hearts wouldn't have had it any other way.  

No wonder I hurt so much, no wonder I miss her like crazy and no wonder I feel so lost without her physical presence.  My days were intimately intertwined with hers.  I knew how fast her heart was beating , I knew how many breaths per minute she was breathing, I knew her blood levels, her oxygen levels, and knew the little signs she gave to tell us she was hurting.  I knew her loves, I knew her dislikes, I knew what hurt her heart and I knew what made her shine.  She taught me how to love no matter how scared I was.  She taught me what was worth fighting for and what I needed to let go.  She taught me to laugh so hard that I cried over silly silly things and she taught me to never forget that people are what is important. She taught me to see beyond a wheelchair, a cane, a trach, a backpack, tubes everywhere, a raspy hard to understand voice, and just see her passions, her joy, her intent, her fortitude and her heart which was so much bigger than all of the other stuff.

We lost our "Wonder" girl almost 20 weeks ago and life was turned upside down.  But despite all of that, I realize that a person can not come into your life and change you at your core without lasting effect. Keyan may not physically be here for us to tickle and laugh with, to ask 100 questions, or to give me one of her non-kisses but our "Wonder" lives on in us.  She lives on in how I relate with the world and she lives on within my heart.  She still brings me joy and laughter and while I would give just about anything to hold her in my arms, look into her eyes, and run my fingers thru her hair,  I am choosing to live on...to keep her alive in my memories and in our conversations and to be eternally grateful that God chose me to be her mom and us to be the perfect family for her.  The life lessons are many but our "Wonder" will keep on teaching them.

Now, go see the movie!!!

My halloween thus far...

It is Halloween....and it has been one of the hardest days for me in the 17 weeks.  Keyan loved Halloween...which I always found interesting since she couldn't eat any of the candy.  Several years she sold her candy to one of our nurses or her grandparents.  The last couple years, she just gave it to her siblings, carefully doled out so that they each got their favorite but Jamahl always got the best of it.  She loved her big brother.

Our Puppy

She loved dressing up although she always sort of let her sisters guide her in what she should be....and sometimes the weather determined it for her.  She was a pumpkin or elephant more times than I can count because they were the warmest costumes we had!  She didn't care, if her sisters thought that is what she should be, that is what she did.

Water fairy

There were years that my brother brought golf carts down and we rode through the neighborhood driving as close to the doors as we could so that Keyan could manage.  Some of the neighbors had non food treats for her well before the teal pumpkin project of today.  It didn't matter to her what she got, she loved every minute of it.

An Island girl

So today, the waves of my grief have been monsoon like in size, my tears rarely stopping.  I feel like my purpose is gone. I am missing the girl who we made special arrangements for, I am missing my girl who held my hand from house to house. I am missing my girl and her wheelchair that Paul faithfully pushed for as long as she wanted to participate.   I am missing what she brought to our family.  It feels like we are so disjointed, so muddled, so foggy, and so pained.

Minnie Mouse

I had a doctors appointment this afternoon and I was looking forward to the distraction from the day.  But as I walked in to OBGYN's office, I had a sneaking suspicion that it might just be harder to handle than I thought.  An office that was so full of new life...pictures of newborns everywhere, and here I was so stuck in my daughters death.  And no, I am not pregnant....that is out of the cards for us, but rather trying to take care of an issue that I have put off since the delivery of my girls.  It was one of the things that I told myself I would do after Keyan passed away was find time to take care of my own health.  So I was just getting on top of my emotions about all of the new babies when the nurse said she needed my obstetrical history.  That included how many pregnancies, how many births, the names of all of our children and their ages, and if they were all living.  There I sat, in front of a tech I had never met, and I couldn't speak....I couldn't get the words out.  I couldn't remembered who had delivered my kids, I couldn't remember the name of the high risk OB that took care of the girls, non of it.  I sat with tears streaming down my face, taking deep breaths.  But every time I opened my mouth to speak, I choked on the words...no, Keyan didn't die at birth, she just died this past July.  I hated how vulnerable I felt, I hated that those words even exist.

Pocahontas

Eventually, the tech looked up from her computer and realized I was having a hard time.  She was really kind and offered me a paper towel so that I could at least stop the tears from streaming on to my shirt and she offered her sympathies and condolences.  It never occurred to me that I would have to answer these questions...I was there because I pee my pants if  I try to do anything....carrying four babies puts a lot of stress on your bladder....and I had never had time to do anything about it.  I thought I was being brave and living up to a promise I had made myself to do something about it so that I can run and be active with my kids without the bothersome peeing problem.  I never expected to have to talk about Keyan in that office today.  It was crushing.

Ladybug

And than, after I had pulled myself together and made it through the appointment I headed to grab some candy for Jamahl since he will be at swim practice tonight instead of trick or treating.  I picked up all his favorites and a sub for him to have an early dinner. I was on my way back home when out of the blue the tears started all over again.  While the idea of going to heaven certainly isn't a bad one right now, I don't  want my other kids and Paul to have to deal with that on top of everything else, so I pulled over.  Heaving sobs escaped my body and the only thing I could think was "How will I ever survive Christmas if stupid Halloween is so damn hard?" I sat in the grocery store parking lot for a solid 20 minutes trying to steady my breathing and stop the tears.  It was brutal and ugly but it had to come out.

Elephant

And just now, I asked Jamahl for a real hug because I needed to feel his warmth and aliveness. He held me for a minute before trying to knock my off my feet with his boy strength and antsiness.  He made me laugh.  I am waiting for the girls to get home so I can quick feed them and then they are going to trick or treat with a friend and Paul and I are supposed to go to dinner....I would like to crawl into my bed and have this day end. But I am going to keep breathing and keep putting my feet in front of the other, because my kids are watching, my husband deserves an hour or so with a wife who isn't totally loosing it, and Keyan would have wanted me to go on with the day and make the best of it, just like she ALWAYS did!

A mothers worry

Today, the librarians of the girls' school emailed me that they had put together a display of the books that had been donated.  She wanted kids to know where the books came from and why we had donated books to the library.  The books will eventually end up on the regular shelves mixed in with the rest of the books but the librarians also put together a "Keyan's memorial" book category in their searchable catalog so that if anyone wants to check out one of Keyan's books, they will know which ones are in the library in memory of her.  I was so touched by this act of kindness.

Here's the thing. I didn't loose the schools star football player or the valedictorian.  Keyan was only at Harbor Lights for 6th grade and she wasn't able to be there half of the time because she was struggling with her health.  As her mom, at times I have feared that no one would notice her missing....or that they would forget about her because life goes on.  I fear that beautiful smile will be lost as time goes on.  But the fact that the librarians took the time to put something together settled that worry a little.  They remember her coming in to the library, they remember her smile and her love for reading.  I loved stopping into the middle school library today and seeing the great selection of books surrounding her smiling face.  Keyan would have loved it!  I smiled through my tears and was reassured that she won't be forgotten.  It felt so good.

Keyan's Haven

Over the past few years, many of you have seen pictures of, or at least heard stories about Keyan in our friends pool.  Doug and Daylene have a backyard that is magazine worthy and they are great about letting us enjoy their backyard oasis.  Whether it be swimming in the pool, cooking in the outdoor kitchen, a friendly round of corn hole, or sitting around a fire listening to music, our family has spent lots of time there.  

Keyan LOVED the pool.  It has a beach entry that she enjoyed sitting in and tinkering around with odds and end toys.  She always had the biggest grin when she was squirting her siblings with a squirt gun from her safe zone.  The pool area also has a waterfall, fountain,  and stream feature that is not only gorgeous but was also great for Keyan to play in.  Many a times she stayed up at the top of the stream where the fountain was.  Doug could set it to only bubble a little bit and she would play with the water coming out of the rock.  She liked to put her feet over it, run her hands through the colored lights, and watch her toys go floating thru the currents into the pool.  Even though our family has a pool in the backyard, we spent a lot of time at "Miller Park" because it was SO accessible to Keyan.  She could splash in the stream, sit in a chair under an umbrella in the zero entry part and read a book, or relax up by the fountain.  She also knew that her iPad was fully functional for when she got cold and decided to be out of the pool and that there was always lots of warm towels and blankets to snuggle up in after her time in the water was up.  Their house and backyard became such a place of enjoyment for Keyan and all of our family.  It is safe place where we could all be ourselves, soak each other in, spend time with friends, and it was easy for Keyan to be there too.

Shortly after Keyan died, Doug and Daylene started talking about putting a rock in the pool area to remember Keyan by.  They made it clear that we could have as little or as much involvement as we wanted and throughout the process checked in with us about how we were feeling.  We would go over and get updates on the rock....hearing how Doug looked through all sorts of rocks to find the perfect one way in the back; going thru design options including wording, fonts, and images; learning how the company went about engraving the rock; and stopping by to see their daughter working on the glass.  Our first hands on part came when we had a rainbow painting party.  The six of us went over and each of us painted a color of her rainbow.  When it was your turn to paint, you got to choose the genre of music and what party wouldn't be complete without rainbow cake, candies, and a rainbow balloon?  It was a beautiful weekend day spent laughing, dancing, crying, and being creative.  Healing in so many ways.  Every step of the way brought so many emotions but never once did we feel pressured to not just feel them all no matter what that looked like.  There were lots of tears all around but just as many laughs and hugs.  

Last night, we had the unveiling of the rock ceremony.  It was our family, my parents, Paul's parents, Doug and Daylene, and Angela and Chris.  We kept it to an intimate group so that I could just take the whole thing in without worries.  We started the evening by taking some pictures of the rock and just admiring the artistic beauty.  It turned out absolutely perfect.  It is colorful, whimsical, reminiscent of Keyan, and inviting.  We all commented on how much Keyan would have loved the rock.  It has a large rainbow, some iridescent glass clouds and sun, a mermaid, and the phrase, "True colors are beautiful like a rainbow."  Keyan never had an pretenses about her.  She was who she was and she never apologized.  She embraced her challenges and radiated joy.  The rock symbolizes all of that.  Angela did the fused glass work and is truly talented in her art.  

Then some of the kids decided to enjoy the heated pool.   Next, we  shared in a yummy meal together.  After a few games of corn hole, and some time spent just enjoying the fire and each other, before we knew it, the sun was setting and the show began.  As the sun set, the lights all around the pool came on which includes a spot light on Keyan's rock.  The rock is beautiful in the daylight and just as spectacular in the dark.  

Upon sunset, the music changed to an all Disney playlist and tiki torches were lit all around the pool and down the stream.  It was magical.  Next up, Chris shared some very special words about out girl and demonstrated her strength, beauty, and love  by a magic trick with the fire.  The fire was suddenly filled with all sorts of color...blue, green, pink, purple, teal, etc.  It was amazing!

 While out attention was focused on the beauty of the fire, all of a sudden, the fountain at the top of the stream started bubbling and the it was lit up red.  I don't know all the ins and outs of how Doug timed it but it was perfect.  The day after Keyan died, we gathered at Doug and Daylene's with some of our family and friends to "celebrate" my birthday.  Not much celebrating was happening but I needed to get out of the house and the kids needed to get rid of some energy.  I was not prepared that night to be so struck by Keyan's absence.  I just kept thinking that she should have been in the pool enjoying the night.  I sat o a rock for a lot of the night just staring up at the top of the stream where she would have been.  Doug came over and quietly said that the fountain would not be turned on until we were ready for it.  He knew it was her place, her haven, and he wanted to honor that.  Before last night, those bubblers bad been off for nearly 13 weeks besides a few test runs for the ceremony.  It was time to bring that added life back to the pool.  It was so moving looking up there and seeing the red lights in the fountain that she loved to play in.  I could feel her and almost see her up there.  It was such a wonderful memorial to her.

She would have loved everything about the rock and the night that we all gathered to light it up and turn her fountain back on. The whole night was a precious memorial and tribute to her joy.  It was also a symbol of how much she was loved and how she touched so many in her short time here with us.  Despite our tears, or maybe through them, we all shared in the legacy that one little girl can have on this world.  We are so blessed that God put her in our lives and that we got to love on her.  All that love makes our pain even greater but I wouldn't trade that love for anything.