One Last Fight

Saturday May 20, around 11:30 p.m., Laila awoke in pain.  This was not something new but it was sooner than the every four hours that she had been waking for morphine.  This immediately concerned me.  I tried to comfort her but I just couldn’t.  I woke Jack up and we decided to call Dr. Moody, our palliative doctor for advice.  She gave us the go ahead to give her another dose of morphine right then but it didn’t even touch her pain.

I crawled in her bed with her and tried to comfort her but the pain was so bad that she became very hateful and hurtful.  She told me to get out of her room.  When I explained that I needed to be there to take care of her, she told me that she didn’t want me taking care of her anymore.  I know that was not her.  Laila was definitely sassy but she was not hateful.  Again, the alarms went off in my head that we were in trouble.

Dr Moody told me to call her back within 20 min if the pain didn’t subside, so I did.  This began a cycle of several hours of back and forth phone calls and increasing and increasing her morphine until we were at 400 times the dose we had been giving in the days before.  Yes I typed that right, 400% increase.  And that only got her relief for about 45-60 minutes.  Her heart rate was sky rocketing, which is one way we can tell she is in pain.  She. was. so. tough.  How she survived even that amount of medicine, let alone the pain is truly beyond me.

Around 4am we called our hospice nurse to come out and access her and she arrived around 5am.  We had decided with doctor moody that Laila needed to be put on a fentanyl PCA.  Fentanyl has always worked better for her for pain during our hospital stays and a PCA would give her a constant dose while also giving us a button to push if she needed an extra bolus of medicine for a few minutes.  The hospice nurse couldn’t get the pharmacist on call to answer his phone but said she would keep trying…. and went on her way.  Jack and I looked at each other wondering how in the world we had gotten to this point.  How were we, two unskilled, medically uneducated people, left to care for our fragile girl on our own.

We kept up with administering the morphine on the hour for the next few hours and called Tammy when morning came.  She was such a God-send.  While hospice was supposed to be who was helping us during these difficult days, it was Tammy who was by our side.  It was Tammy who was there and explaining things to look for in her final hours, while she herself was dealing with her own grief of watching this precious girl that the three of us, Jack, Tammy and I, had worked so hard to fight for and keep “healthy” these last few years.  Yes she is our nurse, but this part was hospice’s job and they didn’t do it.  Tammy came as a friend and a family member to support us when we needed her most and for that we will be forever grateful.  Thank you Laila, for leading us to such a beautiful, wonderful person to share our life with.

When the hospice nurse left around 5:15am she said the pharmacy opened at 8am.  They use a pharmacy on the north side of Chicago, so when 10:30am rolled around and I still hadn’t heard from anyone that they were leaving to come to us, I started texting our hospice nurse again.  We only had enough morphine to last until 4pm so I knew the ball had to get rolling.  Long story short, over an hour of arguing and them telling me they were going to have to move Laila to the hospital for a few hours, and me momma bearing their….. butts and a pump was finally set to arrive to us at 3:15pm.  Turns out our hospice nurse wasn’t on call that day so she didn’t really want to work on it.  I finally had to say “I’m not a medical professional, today I need to be a mother so I need you to be the nurse.”  She proceeded to tell me that she wasn’t on call that day….. would’ve been nice to know earlier so I could’ve had someone who actually wanted to help us.  Once I found that out I called the 800 number and got the actual nurse on call who came out later that evening and was wonderful.

During this unbelievable day we had some visitors come in and out to sit with us or just pop their head in the door and hug us and again I see how God knew and was working things out.  Some family, some friends, some special people from her school.  I am amazed and thankful for how brave some of Laila’s special friends were to come and see her like that.  We were surrounded by those who loved and supported us for part of the day but we also had time that day were it was just us.  The six of us sat in the quiet and listened to the slow in and out sound of the oxygen machine and loved on each other.  Man… the six of us…  I wish I could still say that :(

We had many conversations with the three older kids about Laila and her health and the reality that we would lose her one day in the weeks leading up to this.  We thought it would be further off but we had already begun some family discussions and even a counseling session so that everyone would feel safe with their own feelings and opinions about what would happen one day.  They had decided at first that when the time came, they did not want Laila to remain at home when she was going to pass away.  Through discussions and counseling they had eventually changed their minds.  I desperately wanted to be at home.  I had spent too many days away from everyone sitting next to a hospital bed and Laila had come to the point where she didn’t really want to leave the house.  She wasn’t even asking to go to school which was completely unlike her.   She only ever asked to go to church.

The three big kids were absolutely amazing during all of this.  They weren’t scared, they weren’t mad, they were just concerned and sad.  They didn’t want to see her like this but they, like us, knew this was probably going to be the end days and struggled watching her suffer.  The boys read her stories and talked to her.  Emma painted her nails and helped change the cool cloth on her feverish head.  It was absolutely beautiful and absolutely heart breaking at the same time.  For 14, 12 & 11 years old, they should never have had to go through this but I have to say…. they were destined and designed for such a time as this.  I’m still amazed at how they handled and are still handling all of it.

The pain pump came just at the exact time we needed before we ran out of morphine that afternoon.  God gave me that one last fight for her and came through just in time.  As frustrating as all that was, I just kissed my baby girl and told her that her mommy would keep fighting for her right up until the very end.  And it gave God one more chance to show me that He continued to have us right in the palm of His hand.

As I  prayed during the weeks leading up to all of this, the only thing I would hear God tell me when I would be quiet and still was “I am with you always.”  I would question him and He would say “I am with you always.”  I would praise Him for the work I could see Him doing and He would say “I am with you always.”  I am crying to Him in my deep, deep sorrow and He says “I am with you always.”

That Sunday evening two weeks ago, I settled into bed with Laila for one last night.  Stroking her hair and gazing from the oximeter measuring her climbing heart rate and lowering oxygen level then over at my amazing husband sleeping in the recliner we had brought into her room.  I can still see it.  I can still feel it.  I never, ever want to forget how scared and loved and inexplicably peaceful I felt.  For one last night with my sweet, sweet girl.

Matthew 28:20 “teaching them to obey everything I have commanded you.  And surely I am with you always, to the very end of the age.”


The Rally Day

The above pictures were taken almost exactly two weeks ago, to the minute.  The last pictures I ever took of Laila with her famous smile.  The last pictures of her awake.

Her pain had been steadily increasing over the weeks leading up to that.  I had been sleeping in her room with her for a week or so to comfort and administer meds as she needed them throughout the night.  I laid with her and listened to her stories (very interesting stuff, I will share those another time).  She had been under the care of hospice (managed through her Riley Palliative Team) for almost three weeks.  Child hospice is different.  You can still give TPN and all meds, they just had a better way to manage the pain that we couldn’t seem to get under control.  Some kids are on hospice for years and even come off of their care when they get a little better.  We had hoped for that.    I never shared that she was being cared by them for fear of people thinking she only had a few weeks to live and not understanding.  Except God knew we were the ones who didn’t truly understand that is what His plan would be.

She woke up that Saturday in a better mood than we had seen her in weeks.  Our beloved friends (and therapy center owners) came down and brought us lunch and they got to see her smile and play. It was amazing.  Terry and I even let her have a tiny sip of coffee ;)

She napped and when she got up her mood had declined which was sad but not surprising for how things had been going.  She just wasn’t herself anymore and hadn’t been for quite some time.  My sister and her family came for a bit during that time too.  It was funny looking back through pictures…. her really joyful smile had slowly faded away over the past several months and I hadn’t even noticed.  She still had a smile but it was different.  Maybe something only a momma could see.

She rallied again that night when Tom and Melissa came to see her.  Tom always teased her that she was his girlfriend and that always brought a smile to her precious face.  Tom climbed right up in her bed with her (which is quite a sight at his height!) and let her spray him with a water bottle and “do his hair.”  I remember sitting at the dining room table eating dinner while they played with her and I just soaked in the laughter and smiles.

It was getting late and she really needed to go to bed but Emma had promised her that they would make cupcakes together so instead of waiting until Sunday, I let her stay up late to hang with her “best sister in her whole totally life.” :) Man, I’m so glad I did.  Honestly, Laila was crabby through it and sassed Emma but Em just hung in there with her and let her pour and stir and then while the cupcakes baked, they worked on making crowns from the kit Katie had gotten her for her birthday.  Laila had been asking to do that with Emma but with 8th grade graduation and festivities, they hadn’t found time yet.  They made their crowns and had fun and took pictures.

And that was the last I heard that Laila laugh, heard her Laila sass or saw that beautiful Laila smile.

She knew, I didn’t.  That was her last true day as herself.  She loved on those she hadn’t snuggled with in awhile.  She did things with her sister she had been waiting for.  But she was tired and that night the pain overtook her and from then until the end, I never truly saw her again.

-to be continued

 

 


Reality

We went away for the week to focus on the kids.  We went to Turkey Run State Park and hiked, kayaked, canoed and went horse back riding.  Those were all things that were difficult with Laila here.  It was beautiful and God definitely made Himself known through His creation and with different things He put in our paths.

But we are home now.  And Laila is still gone.  Jack sat on the couch trying to remember what it felt like to hold her.  I sat on her bedroom floor and cried.  And cried.

When I’m out and about it is better because it just feels like she is still at home with Tammy (our nurse) while we run around doing all the things with the other kids that need done.  Tammy would be with her and they would both be waiting for us with a smile and giggles when we came home.

Home is reality.  But reality doesn’t seem real without her.

She seems like she is everywhere.  Pictures, medical equipment, her favorite chair to snuggle daddy, her med cabinet, her laundry….  She is everywhere but then she is no where.  I want her here.  I want to hear her laugh and smell her head & shoulders hair.

Reality isn’t real.  She’s everywhere but no where.

The world doesn’t make sense without her.

Reality is her name on a box with both dates.  I hate it.

*warning – I’m drafting some posts about the days before she died. I need to for myself. My memory is horrible and I don’t want to forget. As hard as it is, writing helps and being able to look back helps. I’ll warn at the beginning of those posts for those that don’t want to read about it.


Dietrich Bonhoeffer

There is a quote I stumbled across several years ago and have always loved.  When certain people have had loss in their life, God has laid them so heavy on my heart and prompted me to intercede for them for years in prayer, even some I wasn’t very close with.  This is a quote I would always share with them.  I see now He was slowly preparing me for my own deep anguish and loss.  I had to dig this quote back out for myself, and for each of you who loved my angel so deeply.

“There is nothing that can replace the absence of someone dear to us, and one should not even attempt to do so. One must simply hold out and endure it. At first that sounds very hard, but at the same time it is also a great comfort. For to the extent the emptiness truly remains unfilled one remains connected to the other person through it. It is wrong to say that God fills the emptiness. God in no way fills it but much more leaves it precisely unfilled and thus helps us preserve — even in pain — the authentic relationship. Further more, the more beautiful and full the remembrances, the more difficult the separation. But gratitude transforms the torment of memory into silent joy. One bears what was lovely in the past not as a thorn but as a precious gift deep within, a hidden treasure of which one can always be certain.” -Dietrich Bonhoeffer


Funeral arrangements

I hated typing that title. I’m ready to press delete, lay in my bed and never come out…..

We will have a time for anyone who would like to come and visit with us at DeMotte Christian School from 11am-4pm on Saturday May 27th. This will be a kid friendly environment. There will be no casket, just a beautiful picture of Laila and lots of love. No one would recognize her without her smile……. We will have coloring stations and balloons and bright colors to celebrate who she was.

We will take a short break from 4-6:30 to rest and then will have a memorial worship service at Grace Fellowship Church. Again, all are welcome including children. We will remember Laila and be encouraged in God’s word and praise him with some of our special friends who will lead us in a time of worship. Laila loved music just like her momma so it seems only fitting to make that a part of this.

We are working with Wheatfield Elementary to create an award and scholarship to one second grader every year who spreads joy and light throughout the halls of the school in memory of our precious girl. We’re not much for flowers or empty spending so if you feel like you need to do something please contribute to the scholarship fund we have set up at DeMotte State Bank or mail it to PO Box 61, Wheatfield IN 46392.

I feel God has put much to share on my heart but that will come in time. Thank you for walking this journey with us. Please, please remembers us in your prayers.


Update

Some know and some do not. If we did not get to you personally and you think we should have, please extend us grace. Laila is in a time of drawing nearer to seeing the Lord face to face. She has not woken up since Saturday night. She is peaceful thanks to the help of our amazing palliative care team from Riley and a local hospice. I think she’s spent so much time fighting that she now doesn’t know how to let go. Pray for her to run into the arms of her savior full force. I have no beautiful Laila smile to share with you but I think this devotion a friend posted suits today. We love and are grateful for you all!


The Little Lilac

I was sitting on my front porch swing this afternoon trying to catch up on my bible reading.  Little moments like that are few and far between right now in the middle of the of chaos caring for Laila, Emma’s end of 8th grade activities, Jackson’s baseball season and RJ’s therapy, homework and karate classes.   Phew, that made me tired spelling all that out, let alone living it!

As I sat there, I suddenly smelled lilac.  I have this beautiful lilac bush right next to my porch by the garage but it blooms and fades away quickly every spring.  Sometimes I don’t even get the chance to smell it.  This year I had watched for it and enjoyed it when the smell was strong and sweet and I even called my mother-in-law, who used to live here, to have her come while she could enjoy it.  But that was a week or so ago and it had since died and the smell that was coming in my front window so strong was gone.  This bit of sweet smell surprised me and when I looked I found one little bloom remained.

That one little bloom had such a strong smell and held on much longer than the rest.   It that got me thinking….. one little thing can sure make a difference in this world.  One small word, kindness, action, can bring so much sweetness.  I think about the way the Lord has used each of my kids in their own special way, not just my life but in the lives of so many others.  And especially as I am watching one of my little bits of sweetness fading, I know that the strength she has will never fade.  The lives that she has touched will never be the same.  The joy and light that she spreads will be here forever.

Thank you little lilac for that reminder today.  Thank you Lord for using your beautiful creation to speak to this hurting momma’s heart this afternoon.  I’m so grateful for the reminder.

Side note:  my kids say they are going to have etched on my gravestone that I was the lady that could make a devotion out of ANYTHING.  One time it was a pile of dirt.  Not such a bad rep to have ;) Thankful for the clear way God gets through my tough mind.


The Tired One

We are finally getting a little bit of a grasp on the new routine here.  We truly have what looks like a fully stocked hospital room and it is pretty crazy.

Laila has been having some good days.  You may have even been one who has been lucky enough to see her out at church and smiling and having fun.  I love that.  I love that you get to see her that way.  I have had people tell me how she looks like she is doing fantastic.  Looks.  Looks can be deceiving, my friends.  Many, many medications are bringing you those smiles and giggles.  I’m very thankful for the happiness but also know that her body is so very tired.

Our reality is now that we don’t leave the house much.  There are too many medications to be given and too much risk for infection to be gone longer than small amounts of time.  Her IV pump is not portable and since all her meds go through there we stay home.  It is also very dangerous for us to be accessing her lines in environments that are not set up for us to be careful and sterile.

So no more school.  That breaks my heart.  Laila loves school and being social.  She loves thinking she has a job as secretary or librarian.

But… This girl.  This girl is still full of smiles when she is feeling good.  A friend heard that she could no longer “steal Crystal’s job” at Wheatfield Elementary, so he came over and asked her to be his new secretary.  He provided her with a binder and notebooks and business cards.  She “works” a lot!  Sweetest thing ever!  It was her favorite birthday present :)

Can’t we all just be like her?  Man, I have so much to learn.  She has a body that is worn out and tired.  She has exhausted all medical possibilities to ever make her body work without constant pain.  But there she is, smiling.  When she has the energy and when the pain meds are working, she lives life to the fullest.  Smiling and spreading joy to all she is around.  She amazes me every day.  I so hope and pray that God gives me one ounce of her strength, one ounce of her joy.  And I pray that you see it too.  Don’t let this go to waste.  Let God use this beautiful little ray of sunshine  to speak strength over you today.  You are loved, important and full of life.  Go live it today.

In John 10:10 Jesus says “The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.”


Not ready yet

I have a lot to say. A lot. But I’m not ready yet. I know a lot of people are worried and wanting an update. It doesn’t make sense that Laila was sent home if she was still sick. And still is. But it does makes sense.

I’m formulating a post over the next few days, just know I’m fielding a million phone calls from doctors, nurses, pharmacists and trying to care for a very complicated girl that I love with all my heart. The days are going by in a blur.

Also know, from the bottom of my heart, that I am so appreciative. I just can’t explain how much awe I feel for how many people this amazing girl has touched with her life.

I’ll leave you with this smile tonight. May it warm your heart and make you remember that our God is a God of miracles. This smile is a miracle. Please believe that.


Isaiah 55:8-9 “For my thoughts are not your thoughts, neither are your ways my ways,” declares the Lord. “As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.


Going home….. sick

We are headed home. She feels pretty miserable but they can’t find anything wrong with her…. she has been vomiting all day. Pain meds, nausea meds, and all kinds of new equipment to learn and manage. Everything is IV now.

Please pray she feels better soon.

Thanks!