A bucket list outing

As most of you are aware, yesterday was a hard day for Keyan and therefore our family too. Keyan slept for much of the day but during many of the snippets of time that she was awake, she asked about going to the "Build a Bear" store. A few weeks back, Keyan had received a gift card in the mail from her third grade teacher and we waiting for a good day to take her to do it....little did we know!

I tried to think of everything I could to make this work for her without her actually going to the store. I suggested we buy something online l, I suggested her sisters go and do it and they would be live on FaceTime and she could make all of the decisions.  Today, she would have nothing to do with those ideas. She said, "How about I try?"  What were we going to say to that?  Paul and I knew that we would regret never taking her if we didn't go and our Hospice doctor told us to go. We had a plan A, plan B, and several other contingency plans. I feared we were completely crazy but then who was I to say it wasn't worth the cost to her body. We decided that we would head out after the doctor visited this morning. 

I called ahead and let the manager know that we would be coming and the reason behind our visit.  She was very welcoming and said she would help us have a great experience.  I thought it only proper to give her the heads up that a family of seven would be coming in and the mom may be a real mess! The doctor gave us his blessing on our outing and actually encouraged us to let her guide us. Jamahl helped her with her shoes and sweatshirt and away we went.

We made it safely to the mall and we all worked together to get her out of the car and into her wheelchair.  We went directly to Build a Bear and started picking out our animals.  Keyan looked them all over several times and finally settled on a dog and the other girls each picked theirs and we headed to pick our sounds.

The manager found us at this point and helped us through the rest of our experience.  I wanted to record Keyan's voice for the other girls but it was loud in the store.  So the manager took us into the back room and took the time to record messages to us all.  "I love you McKenzy, I love you Abby, I love you Sidney, I love you Jamahl, and I love you Mommy and Daddy."  In her precious, breathy, quiet voice that we all know so well.  After recording, we went out to insert the recordings and stuff the animals.  Paul thought we should put our message in a bear too and the girls helped him pick one out.  Jamahl was still insistent that he didn't want a bear.  When I badgered him a little bit and bribed him with a U of M shirt for his bear, he finally said, "I have plan for my recording.  I am going to take it home where it is quiet and record it on my phone so I don't loose it."  I loved him for being vulnerable enough to be real with us all.

Next came the time to put the hearts in the animals.  The manager Mandy asked us all to grab a heart.  She asked to do all sorts of stuff with our little red hearts and lastly asked us to close our eyes and make a wish for Keyan.  We gave all of our hearts a big kiss and then all 7 of our hearts, went not Keyan's dog.  It was an incredible moment....and my heart broke and soared at the same time.  

We dried our tears, sewed the animals up, gave them a bath, where Keyan enjoyed brushing her dog for quite awhile.  Lastly, she picked out a pair of pajamas and dog bowl for her dog and decided to name her "Ginger."

It was such a special time for us as a family.  We made incredible memories and tucked that time into our heart where it can help us with our healing.  We all smiled, we watched Keyan dictate how her day was going to be and it was a success.  Was it a risk?  It certainly was but it was the right risk to take today because I refuse to have regrets...we are all in with making her days the absolute best, no matter what.

 I will ask for prayers tonight for Jamahl, Sidney, McKenzy, and Abagayle.  They all really enjoyed their time today but it also is confusing.  They had a chance today to talk with our Hospice doctor and while they didn't have a ton of questions, they felt better after hearing him describe what was happening in Keyan's body.  At the end of the day today though, Paul and I found all four of them in the girls room and the questions came pouring out.  The descriptions of what they are feeling was humbling.  They use words like ominous, looming, scared, sad, anxious.  They express their relief that school isn't in session right now.  They talk through all the scenarios that are running through their heads all day long....the what ifs, and the hows.  It takes so much bravery for them to keep showing up in in Keyan's room day after day when I know they just want to hide in the back of the house.  And yet, as hard as that talk was, they one by one trickled in to tell Keyan goodnight and they stood hugging each other and talking for much more time that they have up until now.  The questions will keep coming and their brains will let more and more of it in.  It is all uncharted territory but we are forging it together.  

Contradictions

In the still of the early morning hours, my head swims and my heart flows with love.  The house is quiet except for Keyan's machines and the occasional patter of feet getting up to use the bathroom.  The nurse answers my question about the few hours I have slept and then joins me in my quiet watch over our girl.  

Just over 24 hours ago we sat with the other kids and pushed them a little closer to the realities of what is going on.  We have promised disclosure to them as we know things and in order to keep themselves from being constantly churned up they have to trust that we will continue to do just that.  We had dear friends who had come to hep out, never anticipating what they may be in for on this given night.  They sat with Keyan while we answered tough questions, sobbed with our kids, and reiterated that there are still answers we don't have.  Having to turn them towards facing the loss of a sister is a torturous thing for a parent.  There is much of you that begs you to let them stay in that somewhat sweet state of denial but if we have learned nothing over these years, it is to face the hard things...to walk through them, and make them a part of our story.

Some immediately broke down with lots of tears, others never shed a single one.  Some had a lot of questions, while some barely uttered a word.  Some curled up into little balls, and yet others laid spread out on the floor.  Some have needed to be very physically close to their sister, others have retreated to anywhere but there, and still others chose to keep up their routines and fill their in between times with her.  Some very quickly moved to the "what ifs" while others let themselves be wrapped up in memories of the "has beens."  Some see it very black and white with straight lines and for others it is big mess of colors oozing together.

You see, that is the beauty in how we were created.   We all filter things differently, we all respond differently, we all feel so individually.  This is so evident on this journey.  I have known it logically...ever person deals with grief in their own way and yet to see it play out in my every day interactions is marvelous....and hard at the same time.  There has to be so much grace for the questions, the "too cool" attitudes, the quietness, the closeness, the retreating, the nervousness, the tensions and the the laughs.  It is all just a part of this journey.  One we have been on for years and yet it catches us so off guard.  It is beautiful and ugly all in the same breath.  And yet no matter how differently we all may respond, it is our love for the most brave, happy, courageous, and loving little girl that brings us all back to each other.

 

"No Do-Overs"

Dear Family, friends, and all who love Keyan,

All along this journey I have done my best to be up front, honest, and raw with what we are facing.  Today is perhaps one of the hardest posts to write since I started blogging, although I know there are harder ones coming.  For several months now, we have watched Keyan's body get weaker and weaker. We have witnessed the slow decline for years but at this phase the changes are happening rapidly.  Yesterday afternoon, Paul and I, along with my Dad, sat in our living room with our Hospice team to understand what is happening to Keyan's body.

With tears flowing and so many emotions pouring from my soul, I want to share with you all that our days are very limited with our precious girl.  Her body is failing.  Her disease is progressing and there is no stopping it.  No one can predict with any amount of certainty what her body will do but we are talking a matter of days/maybe a few weeks.  Keyan is spending more and more of her time sleeping and this will continue to increase. 

I wish that I had the time to share this with all of you personally.  It has never been more apparent how far our girl's heart has reached.  Whether you have been on the journey with us from the beginning or are relatively new to our story, you are part of our village and we can't express enough our sincere gratitude for the prayers and support. We need them now more than ever.

For now, we are sort of tucking ourselves into home.  We are picking and choosing what to stay involved in as it comes.  Our motto is, "There are no do-overs" and we are doing our best to navigate what that looks like for each of us. Taking time to soak each other in has never been more important and yet the distractions of every day life are healing in their own way.  That was never more apparent to me than during our trip to Florida at the end of May and we are continuing to just be in each others space.

We ask for your continued support.  Please feel free to call, text, or message.  Know they are being read and heard even if you don't get a response.  We are so blessed to have a community upholding us as our knees buckles with the weight of the realities we face.  It boggles my mind how we have known this day might come for 12 and a half years and yet now that it is here, I am in shock.  Please take the time to hug your loved ones tight today.  Cherish their smiles, your mischievous children, tell them you love them! Be present in today and don't let the day slip by without expressing your love.