Wednesday, November 29, 2017

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.

Monday, November 27, 2017

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.




Saturday, November 18, 2017

"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!!!