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!

Four weeks without our Girl

Four weeks ago today we whispered our final goodbyes into Keyan's ears.  Four weeks ago, our dreams and aspirations for her succumbed to the reality that her disease would win.  Four weeks ago we prayed with her, sang with her and held her hand as she entered heaven.   It hardly seems possible that it has only been four weeks....it seems like an eternity. A time span filled with so much pain that it is more readily marked by breaths than by days or weeks.  I had no idea the level of physical and mental anguish I would feel after Keyan was gone.  No matter how I prepared myself for this time, nothing ever allowed me to even get close to the reality of this longing, this emptiness, this darkness.

I wish that I could say that we are finding our way and creating our new normal.  But the honest truth is that we aren't doing that yet.  Right now we are living with, eating with, sleeping with, and wrestling with the weight of grief...all of the time.  I am unable to be distracted from it, I am unable to see beyond it and I am unable to feel much more than sadness, disbelief, and anger.

Where am I?  How am I? I just miss her.  Period.  I miss her so much that I have to remind myself to breath...and even those breaths are shallow and ragged. I miss seeing her in her chair doing her iPad, I miss suctioning her, I miss watching her read her books, I miss kissing her cheeks, and brushing her beautiful hair.  Mostly though, I miss touching her, and that has caught me off guard.  I am not a touchy-feely person.  Hugs can be hard for me, even from my own kids.  And the reality was that Keyan wasn't all that fond of being touched either.  But every now and then, when I was disconnecting her from her pumps at 6pm, she would stand between my legs while I was fumbling through all of the buttons and she would let me place my hand on her side. She might let me rub her back for a few seconds and I would soak her soft soft skin in through the pores of my fingers and memorize the feel of her ribs.  I know exactly how my hand had to be cupped to hold her steady and i fear with every cell in my body that I will forget that curve.

 The beginnings of my brain understanding that on this earth, I will never again feel her is numbing.  It is a visceral pain like no other and I hate it.  Yet, I have vowed to myself to not run from it.  To walk through it and with it, instead of around it.  For me, the only way I know how to honor her is to live with this pain and fear and truly feel it.  Cry because of it, vomit because of it and scream because of it.  I have hope that while doing all of those things, I will also laugh with my grief, be moved by my grief, and smile because of my grief.  This journey is much more complex than I was ready for but it will not ruin me.  It may change me, but I will carry this pain and become intimately familiar with it so that some day I can get glimpses of life beyond it.

One Week

One week ago today our Keyan left her physical body behind and began her eternal journey.  One week of sorting out logistics, planning services, writing an obituary, speaking to a news reporter, panting nails, clothes shopping, hair-doing, attempting to eat, attempting to sleep, and welcoming friends and family from all over to celebrate Keyan's life.  It has also been one week of deafening silence, indescribable physical pain, an emptiness in my soul that I never could have imagined, and incredible amounts of sadness.  My friend Ann once told me that I would never be able to prepare for loosing Keyan and I now know how right she was. In my wildest imagination these feelings are unfathomable.  

I have a lot to say about this past week but today I want to write about Keyan's last 13 hours with us.  I have held many of the details close to me but today I want pull the curtain back and share them with you all.  The weeks leading up to July 2 deserve their own posts because of both the pain and beauty we experienced with her but those will come at a later time.  Today it is about her going home day.

Around 4:30 Sunday morning, our nurse knocked on our door to wake us up because she just could not get Keyan comfortable and settled.  We quickly ran out to her room and upon taking one look and listen to her, I had an immediate physical response and had to run back to the bathroom where I was violently sick to my stomach.  I knew at my core things had taken a turn and we were in our final time with her.  

After getting my stomach back under control and assessing what was going on with Keyan, I quickly called Hospice so that they could help us get her comfortable.  It wasn't very long before we had orders from her doctor for some changes they were hoping would help calm her pain down.  Our Hospice nurse also said she was headed out to our house and would be here in 40 minutes.  We started making the changes and praying fervently that they would work.  It is common at the end of life for secretions to become an issue.  Our entire team had explained to us that while that rattle is often hard for the families to hear, that it is not generally painful or bothersome to the person who is dying.  Keyan was the exact opposite.  Because Keyan had a trach all of her life, none of us were bothered by the sound too much, but it made Keyan crazy.  I will never know if it was the sound or how she felt but she was begging to be suctioned.  The problem with that is it was a case of the more we suctioned, the more secretions her body was producing...it was an endless cycle!  So we were doing our best to not suction, but in those final hours, we turned that machine back on in hopes of alleviating her stress.  She was struggling to breath and was in pain and it was awful.  

By the time Chantel, our Hospice nurse got here, Keyan was resting fairly comfortable again and after making sure things were relatively calm, Paul and I went to grab an hour of sleep feeling like the day might end up being a rather long one. Sleep was hard to find so it wasn't long before I was back up getting report from our friend Debbie who had taken over for our night nurse.  It was evident that at this point in the game, we were using everything we had to keep Keyan moderately comfortable and that is a scary place to be since it can get away from you so quickly.  Pain management is something that you have to stay on top of or you are chasing it.  I put another call into Chantel and told her we were ok for that moment but asked if they could start putting together the next plan so that when we needed it, we would have it all in place.  It wasn't long after that that Keyan woke up and asked for her siblings.

Ninety nine percent of the time that Keyan would wake up in those last two weeks, she asked to see her siblings. Occasionally it was Mommy and Daddy or Grammie and Poppie but almost always it was the kids.  This time was no different and so we quickly gathered them and the rest of the family up and circled around her bed.  The seven of us, my parents, and my brother and his family were all around her.  I know that we needed to say some really hard things.  

Earlier in the week, when we were really struggling to keep her comfortable, we had asked the minister to come out and pray with us all.  Keyan was sleeping at that point so we all gathered in the front yard, our family and close friends, and essentially handed our girl back to God.  We thanked Him for entrusting her to us, asked that His will be done but that he take her to heaven quickly.   The pastor helped us all to understand that no matter what we feeling, nothing was wrong with any of our emotions and that God is big enough to handle them all...no matter what.  Circled up in our yard surrounded by people close to us we released our girl. 

 Again Saturday night, in the stillness of the late late night, I took the deepest breath I had ever taken and whispered in Keyan's ear, "Honey, you need to stop fighting.  I know you know nothing else but to fight but it is time to stop.  Rest and let Jesus take care of you." Uttering those words in her ear took more bravery than I knew I held inside of me.  I cried through the words and Paul took over when my words were incomprehensible because of my emotions.  We laid by her, we kissed her, and we released her so that she would be free.  

So mid morning on Sunday when she asked for her siblings and we gathered in her room we all took turns telling her goodbye in our own way.  Paul and I talked to her about the movie "Miracles from Heaven," and reminded her of how in the movie Anna went to heaven. We explained to Keyan that it was her turn to go sit with Jesus.  Our other kids took turns telling her what they thought heaven would be like.  They explained that she could eat ice cream even if it had chunks in it, that she would be able to run without a backpack or wheelchair, she could ride the lions, she would be able to swim underwater with the dolphins, and told her to look for the horse with a rainbow mane.  We all told her that we would be alright and that we would see her again when it was our turn to go to heaven.  We told her there was no reason to be afraid or worried.  We all sang "Jesus Love Me", "Jesus Loves the Little Children", and "My God is So Big."  And then we asked her if she was ready for us to leave the room and let her rest.  She spoke a quiet and soft "yes" and we all gave her hugs, kisses, and special handshakes.  I was the first to leave the room with a peace I had not felt before.  I got in the shower and for the first time in weeks didn't shed a tear.  It felt good.

Jamahl decided to go golfing, two of the girls decided to go to a friends pool, my brother and his family decided to leave and get some clean clothes at their house and pick up some things that my parents needed.  We all felt very calm about leaving and went on with our day.  Sidney said that she didn't want to leave the house but tucked herself in her room and lost herself in a good book.  The rest of the afternoon was spent with my parents and Paul and I taking turns sitting with her.  Her breathing  had changed yet again to quick rapid breaths that seemed almost spasm like.  It was as if her body was just reacting rather than coordinating itself to actually breath.  From the moment we all gathered by her, we never had to change her medications or implement that plan that Hospice had put into place earlier in the day.  She rested comfortably.  Her soul was at peace despite her body's physical responses.  Keyan had spent much of the last two weeks curled up on her side, llama eye mask on and her hand on her head.  Her face looked pained much of the time and she wanted to shut the world out.  That afternoon she took off her eye mask and didn't put it back on.  While Paul and I were sitting next to her bed she even turned herself mostly on her back and crossed her arms over her chest.  It caught me so off guard that at first it frightened me but then I just sort of chuckled.  Of course she would do what she could to make it easier.  I had been worried for days about getting her body into a good position after she passed....and she took care of it. In between times of sitting in her room, I was out in the front yard pacing.  Almost yelling at how I didn't understand what was happening.  Paul and I had released her back to God, we had told Keyan to go be with God in heaven and yet they were not meeting up!  I couldn't make sense of what else needed to happen.  It was so confusing and painful.  My tears flowed often throughout the day.

It was through the afternoon that my Dad and I were sitting with Keyan and both commented how we felt like there wasn't much of Keyan left in her body and in fact both felt her sort of hovering about three feet above her body. I know that may sound weird but I will not shy away from what we felt.  It was a powerful feeling and one that brought comfort to us in those last hours.  We could feel her just watching over the room and all that was happening.  

My Aunt and Uncle had stopped by and spent some time with us later in the afternoon.  We had good conversation and prayer time but suddenly at around 4:30,  I felt a very distinct urge to ask them to leave.  I hope that I was gracious in asking but even if I wasn't they understood and packed up and left.  We were expecting our kids to come back around 6.  Earlier in the afternoon, it started sprinkling and then changed to some heavier rain.  Because the kids were all doing outdoor activities, just before 5pm, they all converged home earlier than expected and all at the same time.   A few minutes before they arrived, Sidney left her room for the first time and came in to be with Keyan.  All afternoon, Keyan's body was doing that spasmodic breathing, her eyes were rolled in different directions and her skin coloring had changed significantly since everyone had left...it was perhaps a little frightening and I was rehearsing in my head how to explain it to the kids.  But as soon as Keyan heard the kids all coming into the house her breathing immediately changed from shaking her whole body to very quiet, shallow breaths. My Dad stood near her head, Paul and I were sitting by her side, and I quickly pulled everyone else into the room. Her sisters crawled next to her on her bed and Jamahl sat near her.   My Dad and I were able to talk to them all about how there was only a little teeny tiny bit of Keyan left in her body and how we could feel her all around us. I had worried for weeks that I wouldn't know when Keyan might take her last breath but there wasn't a cell in my body that didn't know what was happening. She was surrounded by her family, my parents, my niece, and our friend Debbie.  She took about four or five more quiet small breaths and then just didn't breath again.  The rain had stopped, the sun came out, and at 5:12 pm, Keyan's body gave in to its disease and was still. In true Keyan fashion, she had orchestrated everything and gave us the gift of being with her.  It was beautiful and gut wrenching, horrific and yet perfect all at the same time.  

So much more to share about the days before her death and the hours after but that will all come later...

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.

A month long update

We have been signed up with Hospice for just shy of a month.  It has been a month spent making memories, getting to know the team, working through the logistics of transitioning her care to them,  trying to battle the symptoms that keep creeping up, and settling into this new bend in the road.  

This part of the journey has bigger emotions.  More tears, more anxiety, more sadness, more confusion, and more pain.  It also comes with a renewed sense of appreciation for one another and the freedom to normalize death as a part of life as much as that is possible.  We have seen our other children blossom under the ability to ask a quick question about what is happening and then move on to homework or making lunches.  We have seen them flip through a children's book about death, ponder it for a moment, and carry on.  Being able to voice our worries and fears has allowed us all to wrestle the big things for short amounts of time, weaving it in to our daily lives.  It truly is remarkable how making it a part of us has lessened it's grip on us.

One of the very first things Hospice did for us as a family was to come in and do hand castings of us all.  It was an absolutely beautiful process.  It was crazy and messy. It felt sort of yucky to put our hands into the plaster.  We laughed, we helped each other stand still, and we prayed over our family.  It was crafty, therapeutic, and spiritual all at once.  Besides Keyan, the rest of us understood why we were doing these but it didn't need to be talked about at that moment.  Our eyes locking in to one another's said more than words ever could have.

 All five kids did the first one.  Here they are practicing for the real thing!

 Hands are in the plaster and no one is really sure how they feel about it!  It was cold and squishy.

 Keyan's body is never fully still and her hand needed to be for this to work.  Without saying a word, Jamahl just reached over and steadied her arm so that she didn't continue to struggle.

 Time is starting to feel really really long!

 We took the opportunity to say a quick prayer for our family.  It was just something short, thanking God for the day and the opportunity to be doing it as a family....there were so many words left unspoken!

 The social workers also took impressions of everyones individual hands and then Keyan's footprints.

 Next it was Mommy, Daddy, and Keyan's turn....you can tell how she was feeling about having to put her hand in the goo for a second time!

It was such a special time to just pause and focus on each other.

Just this week, our social worker delivered the final products. Photos will never do them justice.  There are more than just these four.  They are beautiful, intricate, so special, and full of emotions.  They are powerful works of art that move me every time I look at them.

Even Maddie got in on the project!!!  Keyan's foot prints are on of my favorite pieces.

One of the unique things about anticipatory grief is that no matter how far in the depths of it you may be, life keeps going on around you.  Before we knew it, it was Spring Break time.  We had no big travel plans but desperately needed a change of scenery and some time to just be together.  Our special friends let us use their home in Indian while they were on their own spring break trip and it worked out wonderfully.  We ate yummy food, swam, swam some more, tried an escape room (GO AND DO THIS WITH YOUR FAMILY!), watched ice cream being made, had family visit us down there, went on walks, swam even more, had an easter egg hunt with friends, took a day tip to the planetarium in Chicago, and just plain enjoyed out time together.  It was perfect, except for Paul getting quite sick and us doing the nursing for five nights straight....I have to keep reality in here a little bit!!  The end of the week brought sleepovers with Grammie and Poppie and Aunt Roo and Uncle Jay while Mom and Dad took care of Keyan at home,  I am learning how essential it is that the other kids have some sort of life outside of these walls and am so grateful for the people who offer that to them.

 Our very first destination was Chick-Fil-A for dinner as soon as we drove south enough to find one.  As we sat there and ate, we ran into 5 other families from Holland heading south as well.  Of course, most were heading much further south than us but it was still very ironic!

Our friends have a beautiful indoor swimming pool that got a lot of use over the five days we were there!  The kids spent hours every day in the pool playing all sorts of crazy games.

The different craft supplies were a hit with everyone too!

We couldn't be away from home and not keep track of April the giraffe!

Easter egg treasures!

Seriously, the escape room was one of the best hours of our trip.  We had to work together to solve several dozen riddles, puzzles, and clues in order to escape.  We needed about 10 more seconds and we would have been successful!  We had so much fun despite the failure!

Our time in Chicago was brief because Keyan's body needs to sleep a lot but we packed two shows and several of the displays at the planetarium in and even found a yummy burger joint not far away.  A big city is not easy to navigate with a wheelchair and large family but we did it and were pretty proud of ourselves!

And I guess that brings us to this week...Keyan is keeping us guessing and on our toes.  Her GI tract has had significant decline and her disease continues to progress.  We are driven by her quality of life and right now are struggling with that somewhat.  She is needing to get up about every two hours all night long to use the bathroom.  The diarrhea and pressure in her tummy keeps her up and on the potty for over an hour at a time sometimes.  It is relentless.  She is getting very fatigued by it all.  We did start using a little pump to give her a constant drip of medicine to help control the nausea and it is working wonderfully.  She can also give herself additional meds when she feels like gagging and she literally has not gagged and wretched in almost 2 weeks.  We are beyond thankful!  That comes with a price though...a needle poke every four days, another dressing on her skin, two other lines that she is connected to 24 hours of the day and another pump in her backpack.  She cried and cried last night when I changed the needle sight.  It is heartbreaking.  We are searching for better pain management as her tummy still hurts her all of the time...please pray that we can come up with something.  We have a meeting with the Hospice team tomorrow and there is lots to be discussed. 

Please continue to pray for Paul and I.  We need so much strength to make decisions every day for her.  We need stamina as we care for her without nursing some nights.  We need fortitude to continue this race.  We need patience and grace for each other and towards our kids.  We need prayer for sleep and that our brains will give us a break from the constant churning.  Please pray that Keyan can get good rest and that her pain will subside. Please pray for her spirits as she is often confused about the changes in her body and frustrated by the intrusions of symptoms.  Some days, she just has a very low tolerance for life around her.  The noises, the lights, and the activity is all too much. She is such a fighter and that will continue to carry her thought this path but pray that we can all know how to balance the days ahead.