"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.

Classroom Visit

Back when Keyan was in fourth grade we started introducing her to the cognitively impaired classroom in our district.  It was at another school so she went just a couple times a week for fourth and fifth grade but she immediately enjoyed the pace of the program and appreciated being able to be successful at her school work instead of frustrated.  When she started sixth grade, the CI classroom was in the same middle school building so she entered that program more on a full time basis.  Of course her health took a toll on her and she wasn't able to be there very often but when she was, she LOVED her teachers, her friends, and the environment.  She thrived at school and would often tell me how the days went faster when she could go to school for some of it rather than stay home with me, "No offense Mom!" she would say!

Today, I visited that classroom.  I went because one of her friends did not know about her death until school started and he has been having a hard time.  I was delivering some special books just for him that he could have at home to remind him of Keyan.  I was looking forward to helping him in this small way but didn't really prepare myself for all of the emotions surrounding her classroom.  I want to share with you how my visit went.

Upon arriving in the room, the assistant teacher greeted me warmly and said that the teacher and the rest of the class would be back soon as they were just coming from science.  Right away, a boy that is in a grade lower than Keyan, but went to school with her some in elementary school recognized me and said, "You are Keyan's mom!" "Hi Isaiah!  How are you?" I asked.  Right away, he answered with. "Where is Keyan?"  I wasn't sure what the kids had been told or what words were used so I tried to avert his attention at first by asking, "How is middle school going for you Isaiah?"  "Well, it is good but, where is Keyan?" he said again.  I was SO unprepared!  I looked at the assistant teacher with wide eyes and asked her, "What am I supposed to say to that?" The poor lady, we were all sort of floundering thru all of the awkward stuff and I threw her right into it!  She kneeled in front of Isaiahs desk and said, "Remember when we talked about Keyan? Remember we have those books back there to remind us of her?"  Isaiah wasn't buying these iced over answer and I knew that it was really my job to address it as her mom.  Keyan would have just answered their questions....so  I did.  I took a deep breath and said, "Do you remember hearing that Keyan passed away this summer?  That she died this summer?"  With a huge gasp and eyes big as quarters,  Isaiah said, "That is terrible!  What happened?"  We now had the attention of the other kids in the classroom so I went on to explain that she had gotten really really sick.  Another boy Chris spoke up and said, "I knew it, I knew something bad would happen since she had that thing in her throat and her breathing was bad."  pointing to his own throat while remembering Keyan's trach.  I smiled and nodded while saying, "Yeah, she had a lot of things going on didn't she?"

Isaiah then says, "I miss Keyan! Did she get really, really sick?" and several other kids nodded their heads and said, "Yeah, we miss her too!"  I bit my lip for a quick minute and just said, "I know, I really miss her too!" my voice wavering and fighting back the tears.  "I miss her a lot."  I said.  Quickly, Chris said, "Keyan's mom...first there was Keyan's big brother." holding up one finger, he continued with his thought. "Then the four twin girls came, Keyan and her three twin sisters." Now all five fingers were waving in the air representing my five children.  "But now there are only the three twin sister and a brother, like a minus question." Chris finished.  "You are so right, Chris, Keyan leaving us is like a subtraction problem." I agreed.  "Isaiah then says, "Did you have to go to her funeral or did you get to skip it?"  I sort of chuckled under my breath and said, "Yep,  I had to go but it was ok." Little did Isaiah know that moments before walking into Keyan's funeral, our pastor pulled Paul and I aside and said, "Neither of you have ever done this before.  You have no idea how you are going to feel or how your body is going to react.  The nearest exit is directly to your right and if you need to run out at ANY point, it is absolutely ok to do so.  Honor your body and mind and do what YOU need to do!"  And trust me, I almost headed right out that exit instead of proceeding behind Keyan's casket.  I thought how brilliantly smart Isaiah was in his question.  How beautiful his unspoken words were.  What I heard was "That had to be really hard!"

The students went on to ask if Keyan's sisters were sad, how her nurse was doing and if her nurse cried a lot, talked about their friends who they knew were having a hard time, and continued to talk about how they missed her.  I am here to tell you that about the time the first boy asked me where she was, I wanted to run out of the classroom.  I wanted to run and hide from having to deal with the hard questions.  I even told the teacher I would probably just leave.  But I am so grateful that I did not turn away.  I am so thankful for the time I spent in that classroom today.  Being surrounded by Keyan's peers felt safe.  Sitting in a desk that she might have used was almost a sacred space for me.  I ran my fingers over the desk top thinking how she may have set up for iPad or computer in that very space.  I couldn't let my self immerse in those emotions because class was going on around me, but I could rub up against those feelings at the same time I answered life skills questions, sharpened pencils, and helped the kids with their assignments. It was good and I am so glad that I didn't run away from it all.  I would have missed out on those precious moments with Keyan's friends, missed out on the hugs from the teachers, and missed out on the little glimmer of hope that I was able to carry with me.  Our family motto has become "We can do hard things" and I had to live that today but I am so glad I chose to step into the deep waters even for a few minutes.  It felt good!

**All names have been changed for privacy reasons

Thoughts

It is the first day of school for us today.  I am so thankful that we didn't start until after Labor Day.  Our family needed every minute of this summer to prepare for this fall.  The girls are starting seventh grade and Jamahl is going into 10th.  It was the first school year where I have felt totally at ease with them walking into the buildings away from me.  I have complete confidence in the staff at both the middle school and high school.  I know that they are going to not only challenge our kids this school year but also love on them as people....and that means a lot to me.  I am never ready for summer to be over.  I enjoy lazy days with my kids at home.  I enjoy the different pace of summer. This year we crammed in driver's training, USA swim season, theater camp, basketball camp, Camp Geneva, some pool days, some shopping days, days spent with extended family, the start of Water polo season, Family Camp, and so much more on top of loosing Keyan.  It was a crazy three months...so much pain and yet laughter, joy and goodness at the same time.  I will miss the time I had to spent with my kids this summer but I am needing some space to grieve.

The kids have been so patient with me as I continue on my grief path.  But a sad mom or a mom who is crying worries them.  Even though they logically understand why I am shedding crazy amounts of tears; that doesn't help them feel better about a mom who is a little less connected, has a little less tolerance, has problems dealing with loud noises and crowds, and who is less engaging then before.  I need some time to grieve without four sets of eyes on me.  I yearn to sit in Keyan's room and just cry until the tears stop on their own instead of me trying to pull it together because the kids are coming.  I look forward to spending some time just meditating over the last 12 years and unpacking the truths of  a life that I was so intently focused on, I may have lost some of the bigger pictures.  I need to hold space for my girl in the only way I can now...to breathe in her scent, to lay on her bed beneath her weighted blanket, and commune with her memories.

As we faced the first time going to family camp without Keyan this past weekend, and as we treaded through our first back to school day without Keyan, I noticed something.  I knew all these first moments would be hard, but I want people to know that for me, today was no harder than any of the other past 60+ days.  Right now, every single day I am pushing back the cloud of grief.  Every single day I hold back the tears on moments that take my breath away and every single day I cry, often when I least expect to.  Every single day I miss Keyan with a depth that I never would have understood possible before.  Every single morning I wake up assaulted by the fact that my precious child is no longer on this earth and every single night, my brain spins trying to understand this new territory we find ourselves in.  The "first" don't hold any more power over me than any other day.

With these "firsts" though, I did feel a greater permission to grieve.  People were proud of me today when I told them that I came home and crawled back into my bed before going to therapy....usually that elicits worried glances and questions of my "alrightness." (Yes, I am making up words) People in my life were prepared for me to me a wreck today, to be a mess, to cry big ugly tears, and to not be able to hold it together...and I was all those things today and more! But on any other given Tuesday, it makes people concerned and uncomfortable if I am that way too long.  Oh, please understand that I know all of this concern and care is done solely out of love for me but please don't forget about people's grief on the good 'ole average, run of the mill Thursday....because for me, it is no less in my face.  

When I look at this morning's back to school picture of my amazingly resilient kids, I find it almost impossible to look beyond who isn't there. If I use all of my strength, I can see four other beautiful smiles, four other strong hearts, four other confused and scared souls, and four other loves of my life.  Loosing their sister has been a tough journey for them all but our family motto of "We do hard things" is being lived out every single minute of every single day and I could not be prouder, even through my ugly tears.  

Every year, I write a back to school prayer...I have started several times today but it all comes down to this...

Dear God, 

Please help us all to move beyond surviving to thriving.  Keep us safe as our sense of security has been shaken to it's core.  May my children be a blessing to those around them despite big emotions and with your help, may we keep doing hard things!

Finding the good

I put grown up clothes and a necklace on today and even blow dried my hair.  If you saw me at "get your school schedule" night, you may have seen me smiling and engaging with my girls.  You may have seen us running around the building finding classrooms and I even had the where-with-all to make eye contact, ask questions when necessary, and even remembered to order a yearbook for the first time in several years!  You may have noticed my sad eyes or caught glimpses of the purposeful deep breaths as I willed the tears to stay away.  I was trying so hard to be the mom that my girls needed me to be tonight...one who was truly present.  They are nervous and excited about starting seventh grade and they needed me to "be ok" for that hour.

What you didn't see was the sobbing that took place this afternoon before going.  If my shower could talk, it would tell you that I spent a good deal of time this morning on the floor heaving through the tears that mixed with the shower water.  I had no desire what so ever to walk into that school without Keyan tonight. The last time I was there was when we went to pick up her wheelchair just a few weeks before she passed away.  Memories of her last day of school were haunting me....the pain, the misery, the gagging, and yet the strong spirit inside my girl who has happy to have gotten to try to go.  It was so much!  It was just another event in a series of many that stabs at my heart because she should be there.  The tears have continued to fall through the rest of the evening.  I don't try to stop them for now.  I miss Keyan with every fiber in my being and sometimes I can not be anything else than a sad mess.

But through the hard, there was good.  Paul, was right there by my side.  A dear friend brought dinner over before the event.  The truth is we still received several meals this week!  I received messages today from friends who were thinking of us as we took those first steps back into school. I had 50 minutes with my therapist this afternoon where I could let it all out.  I had a friend who called to say she was crying with us.  I had a friend who gave me a hug at the school and just said, "I know."  Even the mom who asked me if we had a good summer because she had no idea Keyan had died, came and found us later in the hallways after learning our ugly truth and said she was so sorry for our loss and gave us both hugs.  She didn't have to do that...she could have just avoided us, but she didn't, even though it was hard.  Our girls were happy and resilient and have each other to lean on.  There is so much good in all of that.  

The age old saying that life goes on is SO true.  I wish it didn't, and in fact for me, my life has sort of stopped.  Nothing seems right about life without Keyan and everything seems off kilter or upside down.  But our village has not forgotten us.  Despite their lives going on, they are still carrying us through this trench and showing us so much love and grace not just today but every day.  They are proud of me when I can pull myself together for a few minutes and they are alright when I can't.  We are so blessed to have family and friends who let us be sad and love us anyways.  Like so much about our lives, today was a day that held so much pain and heartache but also held some pretty beautiful moments.  Those moments may not always be easy to see through the fog of my grief but they are there and for that I am so thankful.

I will end with a picture of the three girls from yesterday after getting their hair cut.  Another hard moment that we made it through together.  We missed Keyan's hair cutting antics...but we talked about her, we laughed, and we got a little teary.  Abagayle, McKenzy, and Sidney are blossoming despite their parents being a little emotionally MIA.  They never cease to amaze me in their strength, humor, inner beauty, and the love they have for each other, for Keyan, and for the rest of us too!