Author Archives: Angie

About Angie

My greatest desire in life was always to be a wife and mother. As I try to do these things to the best of my ability some days I pull my hair out, some days I cry, sometimes I laugh until my stomach hurts and EVERYDAY I thank God for giving me the desires of my heart in His timing and His will and ask Him to give me the strength to do it His way.


New Day

How am I?  Well….. I just don’t know, really.  There have been a few days where I haven’t cried.  I wasn’t sure that would ever happen.  The days where I sob are less although when the floodgate opens it feels like I’m going under for a bit but God always brings me back up again.

This weekend had a lot of triggers for me.  Things that are joyous but also bring sorrow.  One time I did a study on the book of James and remember vividly learning how joy and sorrow are very closely related and sometimes you can’t tell the difference.  That didn’t make as much sense back then like it does now.

This weekend a new park opened in our town that is handicap accessible.  Three amazing women in our community had a dream for it and they saw it through and made it happen.  Amazing.  A donation was made in Laila’s name to help them reach a matching grant that helped make this happen.  At the ribbon cutting ceremony they recognized Laila and all that she meant to so many people and it truly was beautiful to be a part of.  But also, it was so heartbreaking to look at that playground and never be able to see her there…..

Then there was church.  Church rips me to shreds every. single. Sunday.  I’m a music gal through and through.  Every Sunday in worship I bawl like a baby, thankful for lighting and sound that let me have my moments without drawing too much attention to myself.  (thank you worship team for always being so amazing!)  Just singing praise to an awesome God and knowing that He cares and weeps alongside me.  Singing words that I absolutely know are true but man do I wish He would just come back and make all things right in this broken, hurting world.

Last night we had a special service where Dr. Jeff Huxford came back to town to tell about all that God has been doing in his life after his near fatal accident several years ago.  Watching him on stage has always been a miracle since his accident but also seeing him give God praise and seeking Him in what is next and how God can use his tragedy to draw people near was definitely inspiring.  You can check out his blog by clicking here.  He brought a new artist named Becca Bradley with him to perform some of her songs and again God used song and worship to keep reminding me that He is working all things out for the good of His purpose.  You can also check out her info by clicking here.  One thing after another, with eyes open to see, God is encouraging me and holding me close.

So, how am I?  Well… I’m normal I guess.  Whatever that means.  I lost a beautiful, joyous part of my life who will never be replaced.  The days roll by and people move on and yet the hole remains and always will.  I will never be the same.  A sorrow will remain in my heart and my life forever.  Although there are a few things in my life that are bringing me new joy.  I have rediscovered my love for nature and outdoors.  I’m loving hiking and kayaking the most right now but since I can’t do those things every day, I settle for sitting in my backyard laughing at our new baby goat and all the crazy stuff she does.  We named her Ann :) .  I’m also spending time outside while I train for a half marathon that Jack, Emma and I are doing in November to raise money for World Vision.  Some of my time is also spent working for a friend of ours who owns a resale shop here in town and I’m enjoying that, too.  And of course my bible reading and my work in Celebrate Recovery are my main focus.  I’m so so thankful for that ministry and what has done in my life and the lives of so many others who walk through the doors.

 

One last thing I wanted to leave you with today.  I’ve stated this before but each of my kiddos have a song that I feel for them.  Again with the music thing!  While I was out training the other day, Laila’s song came on.  Hers has always been New Day by the Robbie Seay Band.  It’s lyrics talk about seeing something and not realizing how incredibly beautiful it is until later on.  I always thought of this because of Laila’s difficulties physically and also her rough beginning of life but how all of those things led her to me and how all of that from the human eye might not look beautiful but when you look past it all, it truly truly is.  Well anyway, while I was walking and praying and listening  I felt God tell me that this song still applies to me today.  This situation is not beautiful but God is bringing beauty from it…… a scholarship, a park, hundreds of changed hearts….. I have to choose to see it.  I’ve listed the lyrics below but for best effect you wanna take a listen on youtube, I used it for Laila’s adoption video.

Is there anything in your life that you need to adjust your focus on today?  Anything God might be trying to make beautiful.  Dear friends I hope and pray we can find beauty together today.  Thanks for sharing this journey with me.  If nothing else I hope the picture of #annthegoat made you smile :)

Lyrics

I’m gonna sing this song to let you know that you’re not alone
And if you’re like me, you need hope, coffee and melody
So sit back down and let the world keep spinning ’round
For yesterday’s gone and today is waiting on you to show your face

And it might not be the prettiest thing that you’ll ever see
But it’s a new day, ah baby, it’s a new day

And it might not look like a beautiful sunrise
But it’s a new day, ah baby, it’s a new day

I’m a pilgrim soul, I’ve traveled far and come back home
And this land is hard and cold for those who long to love
And I know it might seem that the world is crumbling
But it’s me and you dancing in the kitchen at 2 A.M. and we’re still alive

And it might not be the prettiest thing that you’ll ever see
But it’s a new day, ah baby, it’s a new day
And it might not look like a beautiful sunrise
But it’s a new day, ah baby, it’s a new day

It’s the calm of the storm that comes blowing in
It’s the springtime saying I’m back again
The clouds that roll by crossing moonlight
Me and you, love, everything’s alright

Standing in the rain with nowhere to go
Laughing and we’re spinning and I hope that you
Remember this day for the rest of your life
Me and you, love, everything’s gonna be alright

And it just might be the prettiest thing that you’ll ever see
Well it’s a new day, ah baby, it’s a new day
If you look outside to see a beautiful sunrise
Well it’s a new day, ah new day, it’s a new day

And it just might be the prettiest thing that you’ll ever see
Well it’s a new day, ah baby, it’s a new day
If you look outside to see a beautiful sunrise
Oh it’s a new day, it’s a new day, it’s a new day

It’s the calm of the storm that comes blowing in
It’s the springtime saying I’m back again
The clouds that roll by crossing moonlight
Me and you, love, everything’s alright

Standing in the rain with nowhere to go
Laughing and we’re spinning and I hope that you
Remember this day for the rest of your life
Me and you, love, everything’s gonna be alright

I’m gonna sing this song to let you know that you’re not alone
And if you’re like me, you need hope, coffee and melody

 

Hebrews 12:1-2

Do you see what this means—all these pioneers who blazed the way, all these veterans cheering us on? It means we’d better get on with it. Strip down, start running—and never quit! No extra spiritual fat, no parasitic sins. Keep your eyes on Jesus, who both began and finished this race we’re in. Study how he did it. Because he never lost sight of where he was headed—that exhilarating finish in and with God—he could put up with anything along the way: Cross, shame, whatever. And now he’s there, in the place of honor, right alongside God. When you find yourselves flagging in your faith, go over that story again, item by item, that long litany of hostility he plowed through. That will shoot adrenaline into your souls!


Seven years ago today

Seven years ago today I brought a small, fragile, 2 year old girl to her forever home.  We spent the day with her amazing first foster mom.  We traveled together to Riley for some doctor appointments and then I drove home from her house with a smiley quiet girl in my back seat.  We approached our house to find it decorated with “It’s A Girl” signs and balloons.

It’s a girl.  That she was.  A girly girl with her hair bows, sparkly shoes and a million purses.  Barbies and American girls dolls.

These last couple of years she would say things to me like “You’re the best mommy in my whole totally life!” (she had a little valley girl in her as well!)  And I would respond to her and say “Thanks Laila because you had two mommies before me too!”

Today I just want to share that she was totally and completely mine.  Not in the sense that I’m saying she wasn’t theirs too because I believe with my whole heart that she was.  I’m speaking of the condition of my own mind and emotional attachment to her.  I do not feel that I could love that girl in any more of a fierce way, even if I had given birth to her.  She wiggled her way down into my soul in a way that I just don’t know if I will ever recover from.  I have had a few people remind me in my grief that “deep love experiences deep grief in loss.”  That is absolutely the truth.

Seven years ago today a tiny girl was carried through my door and stayed for her forever.  I would not change it for anything.  I wouldn’t change the nights of sitting up with her crying or the changing and changing and changing her clothes after a vomiting episode.  I wouldn’t change the million trips to Indy or the struggles of disagreeing with doctors and fighting for what she needs.  Or the IEP meetings and trying to make people see and understand her through my eyes; the eyes God gave me to see her so differently and to see her ABILITIES not her “disabilities.”  I wouldn’t change the hours and hours of therapy that we traveled to.  I wouldn’t change the countless times on the phone trying to fix whatever mistake the medical supply company had made that day (and if you know me, Apria is my absolute nemesis!!).

I wouldn’t even change my broken heart.

I wouldn’t change a single day or a single minute.

Because she was worth it.

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Laila Smiles Scholarship

We wanted to thank those of you who have donated to the Laila Smiles Scholarship.  I’m thinking about thank you notes.. I really am…. they are hanging over my head and I have them and even the stamps but I just haven’t done it yet…..

For those that don’t know, we have created a scholarship fund in memory of Laila.  We got the idea from our friends, the Kalufs.  Most of you know that our Emma won the award this year in remembrance of their daughter Jill.  Jill’s award has been in Emma’s mind since she was in 1st grade watching one 8th grader every year win it.  Her award made Emma strive to be someone worthy of receiving it and in turn, Jill’s memory lives on and her life continues to make a difference in the school she attended.  We wanted that for Laila as well.

Our first stop after the funeral home on May 23rd was to Wheatfield Elementary to speak with Mrs Vollmer about our idea.  She was on board!  So on board, that they pulled things together and a student from Laila’s class actually received the award this year already!  Way to go Connor!!  I’ll hopefully write another post including Connor soon when we get him his trophy.

We decided to call the award Laila Smiles after the hashtag that blew up facebook for days after she left us and just thought it was very fitting.  The way the award works is that at the end of each year, the second grade teachers will each recommend a student to be nominated for the award.  Then the pool of students will be voted on by the entire staff.  We want to know that this student not only exhibits these qualities in the classroom but also in the gym and cafeteria and on the playground.  We want this student to be someone who brings life, laughter and smiles to the hallways of Wheatfield Elementary.  Just like Laila :)  The student will be presented a trophy and we will pay their school registration fees for the following school year.  We wanted to usher a student into third grade each year since Laila didn’t make it that far.

So, I wanted to give you an update!!  Crystal went with me last week and helped me pick out a perpetual plaque that will hang on the wall  of the school where we can add the next recipient’s name each year.  I definitely wanted Laila’s picture on it but my, oh my was it hard to choose one! And although this one is Christmas themed……. I just had to use it.

The trophy company also asked if we had some sort of logo to use on the trophy and plaque.  So, Crystal drew something up real quick and they ran with it.  And I LOVE it!!

Working on this has been a blessing to me.  It gives purpose and meaning and if you have talked to me in the last month or so, you know that is what I’m searching for right now.  And let me tell you, wow has God shown me some amazing meaning in all of this.  I want her back.  I want everyone else’s blessings to go away so I can have mine back, just being honest.  But, since I don’t get to choose that, I will find blessing.  I will search for them everywhere so I can keep going.  Thank you to those of you who have shared with me so many things God is doing in your lives because of our struggle and because of #lailasmiles :)

 


The Living Room Battlefield

This happened a few days ago.  Crazy stuff and I just keep feeling like I’m supposed to share.

I have been trying to be very intentional about my bible reading and study.  I have even been getting up with Jack before work so that between the time that he leaves and the kids get up, I can get that time alone, uninterrupted (thanks a lot Proverbs and all your sluggard talk!).  I’m reading through the bible again this year and I’m also in my third Celebrate Recovery step study (this year focusing on my control issues) so I have a lot to get done each day.  I feel like God planned it that way, knowing I would have extra time on my hands….. :(

I was sitting in my living room and I was reading the end of John chapter 4 and the beginning of chapter 5.  The first part is about an official whose son is sick and he asks Jesus to heal him and he does.  Then the next part was about a paralytic who has been sitting by the pool for years and Jesus asks him if he wants to be healed and he heals him.

Enter darkness.

I sat in my living room and a regret and guilt swept over me like I have never felt before.  My mind was flooding with thoughts that Laila wasn’t healed because I didn’t have enough faith.  If I had only believed, truly believed, that God would heal her and we wouldn’t be where we are today.  So. much. guilt. that I couldn’t breathe.  Sobs overwhelmed me and I cried out to God asking Him why.  Why were these thoughts coming into my head, and especially when I’m sitting there trying to seek Him and His wisdom through the best place possible, His Word.  I had been so at peace with how things had shaken down.  Get me right here, not ok with her death, but peace that I felt like I had done everything I could and that God had directed our decision with hospice and all of that.  And all of a sudden as I’m reading the bible it was all gone.  No peace, just panic, guilt and shame.

I sat there thinking that I couldn’t live like this (not suicidal), with this heavy deep guilt that I couldn’t get out from under.  I cried and cried and I finally got up and grabbed my phone and texted my sponsor and told her that there was a battle going on in my living room for my sanity and my peace and I needed her to pray with me.

I sat and asked God for wisdom and understanding.  I needed to know why He didn’t heal her.  Was it my fault?  Did I not have enough faith?

Then a whisper……. “I DID heal her.”

You guys, I literally felt like I was a disciple in the boat during the raging storm and Jesus was sitting there sleeping while I was panicking and wondering why He wouldn’t help me.  Then it was just like the story, with His few words He calmed the storm.  Four words.  I did heal her. He did, just not the way I wanted Him to.

I immediately stopped crying and could breathe again.  It reminded me of the night she died and I just couldn’t get control until I had her in my arms.  Except this time I just couldn’t get a grip until He had me in His arms.

Spiritual battles are real folks.  So real.  And I hesitated writing this because I know it sounds looney but I just couldn’t shake that maybe there is someone else out there who needed to hear this.  The enemy is so sneaky!  This time he even used God’s own Word to try to get at me.

Well played Satan but you forgot that my God has already defeated you and I will hang on to Him tight, like a terrified child on a roller coaster.  Now that I think about it….. that’s kinda what I am.

Thanks for letting me share.

PS – my little spiritual warrior is pretty cute, huh??!! :)


Princess for a Day

April 24th Laila was discharged from her last ever hospital visit.  May 2nd she turned nine years old.  May 22nd she went home to be with the Lord.  Today is June 20th.

I had been thinking during the month leading up to Laila’s birthday that we should have a party for her.  She had never had a party like the other kids had.  We always celebrated with family, and sometimes a few family friends, but nothing like the other kids have had.   It was so hard to plan something in advance, never knowing what her health would be like.  And honestly, she had only ever been invited to two school friend’s birthday parties ever and one was just a week or so ago which she didn’t live long enough for.

So, sidenote that deserves it’s own paragraph….. INVITE SPECIAL NEEDS KIDS!!  They like to have fun too!

(steps off soapbox)

Anyhooo….. we decided that this was the year to make her birthday extremely special.  But what to do?  We had originally thought bowling because our local place has a little ramp thing that she was able to use.  But honestly her strength was low and I wasn’t sure that would work.  After tossing around a few ideas I thought I better just ask Laila.  She said “I want to go to Wheatfield!”  If you remembered from an earlier blog, it had surprised me that she hadn’t been asking to go to school but when faced with the choice of anywhere at all she wanted to go for her birthday, she said Wheatfield Elementary.  I should’ve known :)

I threw the idea out at my good friend, who happens to be the secretary and she said “I bet Mrs. Vollmer (the principal) would give that girl anything she wants.”  She was right :)

Plans went into motion for a princess party.  Laila, Emma and I had gone to see the new Beauty and the Beast movie at the theater and it was the only movie I ever remember Laila actually enjoying at the theater.  So when posed with the question of a theme she chose princesses, Belle in particular.  This all came into motion on a Friday morning and her birthday was the following Tuesday.  We had some work to do.

I knew her time was limited.  Not SO limited but I was fairly certain this girl was never going to have another birthday. So this had to be grand!

I told the school I would take care of everything as long as they would give me a space.  I set to work calling around everywhere trying to find a face painter and deciding whether or not to trust Amazon Prime to get the decorations there in time.  But the dress….. Oh the dress.  Grandma decided she must have the best princess dress ever.  Which of course meant a trip to the Disney Store.  With Laila’s frailty I called my friend and asked if she could be a car babysitter so I could take a trip to the mall.

When we got there Laila demanded that she was going in too :) I was so thankful she had the strength for that.  Melissa and I had so much fun running around the store with her and figuring out just the right dress, and shoes, and cell phone case… and anything else she wanted because grandma had no budget for her special girl…. thank you grandma :)

Everything came together.  Of course it did, because it was very important.  How important, I did not even realize.

Tuesday rolled around and it was the day.  My baby turned nine years old.  She grew up so much in that ninth year.  Her looks changed, she grew so much wittier, she had a lot of life under her belt in that last twelve months.

She and I were home alone getting ready for the party.  I set up people to help with everything so I could stay home so that she could nap and I could take her there at the last possible minute.  Saving every ounce of energy she had for finally seeing all of her beloved friends for the first time in a long time.  I slipped her gorgeous dress over her head and picked her up to pull down the back and just held on.  In that very moment God made me very aware to soak it in.  I was never going to dress her for prom or her wedding.  Not to miss that very moment that I would never get back.  There were a lot of things that I did not realize would be her “lasts,” but this I did.  I held her a little longer and cried and sniffed her in.  And then out of nowhere she said “mommy, this is a dream…..” in such a wonder eyed voice.  It was one of the most perfect moments and I will never forget it.  Yep, I’m sitting here sobbing just even thinking about it.  Man, I miss her.

We got to school and everything was all set and everyone was waiting for us.  She squealed as we rounded the corner and yelled “WHEATFIELD ELEMENTARY!!” like she always did when I would drop her off after therapy.  She could barely handle herself as we walked in the door and almost immediately Mrs. Ward called Miss Crystal’s phone and Laila knew she was back at the work of stealing that secretary job ;)  Just look at her face!

Just as I had asked, the teachers set up to file kids in and out a little at a time so Laila wouldn’t get overwhelmed.  She was so excited to see all of her friends.  Laila was especially worried about where all of her special friends were and that they were being taken care of at her party.  Little Mother Hen.  Even her buddy Cole came and her best friend Zoe and that was a  good thing because she was the life of the party making Laila smile for every picture, even when her strength was fading.    The face painter was amazing, the staff was loving and so excited to see her, all the kids told her how beautiful she was…. The KVHS prom queen even sent her crown for Laila to wear and then Laila’s buddy Trent came dressed in his cute little prince outfit and they looked like the little prom king and queen.  I always told Angel that Trent better be the nice guy who takes the special girl to Prom, we just didn’t get that far.  But they do look cute don’t they?

One other big surprise was that right after we got there a special guest walked in…….

The school set up for a real life Belle to come and share Laila’s special day with her.  She even sang to her which was so fun and special.

Mrs. Maze brought in the library cart so Laila could get back to work checking in books with her.  She always loved to have a job and it was so good for her on so many levels.

I’m so thankful for these things that God laid on my heart to do with her.  I honestly have no regrets when it comes to stuff like this.  He was so gracious to give me insight and warning of time drawing near.  You can never, ever be prepared for something like this but I’m thankful for memories like this and having my eyes so wide open to how much God loved Laila and how much he loves me.

She will forever be His princess.

1 Peter 2:9 But you are a chosen people, a royal priesthood, a holy nation, God’s special possession, that you may declare the praises of him who called you out of darkness into his wonderful light.

Thank you to Dina Lynn Photography for catching all these beautiful candid pictures for us!!


There once was a girl….


Once upon a time there was a little girl who needed a home.  She was weak and frail and sick but the way she smiled melted all of that away.  She said “hi” in the softest little voice and that drew in her new mommy from the very first day.

Once upon a time there was a scared new mom.  She had two other children before but none quite as complicated or terrifying as this new little one.  There were buttons to push and tubes to clamp and medications to give that all completely overwhelmed her.

Once upon a time there was a dad who was smitten by this new little girl from the moment she was carried in the door.   He was confident and loving and dove in head first to care for this precious girl.

Once upon a time there were a sister and brother who had been waiting for a new sibling for a long time.  This new little girl was not what they had imagined but something in them leaned in towards her and loved and accepted her without hesitation.  This brother and sister gave up outings and “normalcy” and selfishness all because this little girl was completely worth it.

This little girl grew.  She learned to talk and joke and be strong.  She captivated everyone she came into contact with.  Most of her life was filled meeting doctors and nurses and therapists and teachers.  She brought a smile to all of their faces and everyone was completely drawn to her.  Her daddy thought she might be part angel because their was just something supernaturally awing about her.  She defied odds for a few years and completely blew people away with her strength and joy.

Then…. the little girl started regressing.  First she lost control of her bladder.  Then her bowels.  She lost the strength to learn to walk and sit up.  She began having severe aches and pains and would cry to her mommy that she was in pain in her tummy and her back.

The mommy grew very concerned.  She fought with every fiber of her being for someone, anyone to give her an answer as to what was happening to her little ray of sunshine.  Doctor after doctor, test after test with no answers.

One February morning the doctors had to remove major parts of her body.  Her mommy was very scared that she wouldn’t make it.  But she did.  She was such a fighter.  Six days later an emergency surgery.  Four days later another.  Now her mommy was terrified but kept on fighting for answers and healing.  This little girl fought through all of that and made it back home but was never quite the same.

Months went by, and even a year, and despite all the fighting and searching and trying to make things work….that little girl’s body was just too tired.

Once upon a time there was a little girl who left this world.  She left a hole so big that it doesn’t even seem possible.  Thousands of people knew her story and wept for the loss of someone so incredibly special.

Once upon a time there was a mommy who missed her little girl so much that she couldn’t even breathe.

Matthew 5:4 Blessed are those who mourn, for they shall be comforted.


Our Final Day

*disclaimer – these posts are for me to remember.  This one in particular may have descriptions or images not everyone is comfortable with.  Feel free not to read.  I’m going to write without restraint or thought for anyone except myself.  This is my journal of life and our reality was in some ways horrifying and in other ways beautiful.  This is my story of my last hours with my daughter and I don’t want to miss a single thing.

It was a Monday.

Things had been quiet and still through the night.  Although the sound of her lungs had grown very disturbing.  She sounded like she was drowning.  She had greenish foam coming up her throat and out her mouth so we had to turn her on her side to be able to keep it cleared out.  It was absolutely horrible.   There was a medicine that we had been giving her to try to help with that but we had been told to put it on the wrong spot.  Because of our fiasco with hospice the day before, the nursing manager was the one who came to visit that morning and once we got the right information, we administered the medicine, a lotion of sorts, behind her ear instead on her neck like we had been told and within 15 minutes all of that cleared up.  I’m still, and always will be amazed at how God made our bodies work so intricately.

Because Laila’s stats had remained the same for about 18 hrs, we told the big kids we thought it would be ok if they went to school.  At this point it looked like it could be days of waiting and they were OK with not sitting there staring and waiting for their sister to die.

My thoughts…. my thoughts were so different than I had imagined they would be.  Jackson put it best when he told me he felt there was no good answer.  Praying for her to stay meant pain for her but praying for her to die meant we would be without her.  So very right, my wise little buddy.  But honestly, I was more scared that she would stay.  I hate to even write that now because I would give ANYTHING to have one more hour with her.  Sometimes my selfish thoughts ask myself why.  Why didn’t I take her back to the hospital one more time.  Why didn’t I try one more surgery.  Why.  The answer is so clear.

It had become about me instead of her.  I had already put her through one more surgery than the doctor actually wanted to do.  I had taken her to the hospital only to have them shrug their shoulders with no more answers than they had been giving me the past several months.  I wanted her here and I was willing to do anything it took to keep her, even causing her pain.  And honestly in my worst moments right now, I would let her be in pain again to feel the warmth of her tiny fingers.  I would let her yell at me just to hear her voice.  But God was very clear to me when my own heart was and is deceptive.  He said it was time to let go.  I had to put my pain in place of hers.  I had to do what God was calling me to by stopping the fight  and letting Him take her.  Oh God, this is so hard.

Throughout the day things were pretty quiet.  Jack and I remained curled up together in our over-sized recliner in her room, just staring at her and holding each other.  I can feel the quiet and peace that was in that room.  Words can not describe it.  Just the still sound of the machine in…and out….in….and out.

And that room.  There was an anointing on her room.  It was a place of refuge and a place of peace during those days.  Once her pain was under control on Sunday, it just went still.  Those few who had the privilege to enter it felt it too.   It was definitely supernatural and I believe it was all the prayers that all of you were praying on our behalf.  Or maybe, old testament donkey style, there were angels in there that we could not see keeping guard.  (google it, it is a real thing!)  Whatever it was, it was from God.

We realized that we had been praying individually, but we hadn’t gathered warriors around us in prayer.  Not in our own strength or even brain power, we had decided the best thing was to pray that God take her soon.  We saw nothing changing and we hated the thought of watching her like this for days on end.  So, we invited you all in on the situation so you could pray for us.  We let ourselves be vulnerable because that is what we felt God calling us to do.  We shared our horrible reality and asked you to pray.  Then we let our church staff come over and huddle around her and pray with us.  And then the hospice chaplain stopped and prayed my very favorite, Psalm 139, over us.  It was beautiful.

Not much later we started to see her heart rate slowly climbing again.  She had been hanging out in the 160′s but slowly crept up to the high 180′s over a few hour period.  We also started to see her oxygen level slowly decline from around 90 into the low 80′s and even 70′s. We were watching for her respirations to decrease but they stayed about the same amount but she was definitely taking shallower breaths.

We called my mom to go pick up Emma from an after school event she had gone to in another town.  We told her that if we saw any changes, we would have someone bring her home.  She was hesitant to go in the first place but we told her if Laila had the choice between staring at her and racing go carts and bowling, she would’ve left Emma in the dust.  She had such a spirit of joy and adventure for life.

Jack’s sister’s family stopped by.  They were here for a very short time before I started watching the numbers on the monitor rapidly start to decrease.  I told them I thought it was time to let Laila rest and they kissed her goodbye and left.

We called Emma, Jackson and RJ into her room to tell them we thought it was time.  They kissed her and each did what they were comfortable with.  Emma and RJ left the room and Jackson stood right beside her, holding her hand with Jack while I laid next to her.

Within minutes she abruptly stopped breathing.  It wasn’t what I expected.  I expected her breathing to have longer pauses in between and to have more time.  This was what I had obediently let myself pray for but suddenly a panic ripped through me.  I begged her to breathe again.  Sobbing and crying in my own pain.  There is physical, uncontrollable pain when you watch your child leave the world you are in, never to breathe again this side of heaven.  It is absolutely horrible.

I sobbed and cried in a way I never thought possible.  Emotions have always been a struggle for me.  I even went years without actually being able to cry.  But this.  This was the first time in my life I sobbed and wailed and I just could not stop.  I was scaring Jackson.  He started telling me to breathe because he could see I was hyperventilating.  In my head I was telling myself “stop, you are scaring him.  pull yourself together.”  But I just couldn’t.

Finally I starting frantically pulling the tubes out of her.  The tube for oxygen in her nose.  The tube attached to her stomach draining out the blood that was pooling in there.  The tube draining her bladder.  The tube pumping all the pain medicine into her.  I pulled out everything and scooped her up into my arms and cradled her.  And the sobbing stopped.  I could breathe again.  I just needed her in my arms.  I needed to feel her and soak up every bit of her because I knew this would be the last time.  I know she wasn’t there anymore but it didn’t matter.  To me if her body was there then I still had a little bit of her left to keep.


Before she passed away I took her temperature….106.9…. I had to take it a few times to make sure I read it right.  Can you even imagine?  But can I tell you something?  We held her and rocked her for quite some time and she stayed warm.  It sounds crazy but that fever was such a blessing as we said goodbye to her body.

6:43pm on May 22, 2017, My beautiful daughter entered the kingdom of heaven.  It was just the six of us here which was the way we wanted it.  In the days leading up to her death, I now realize that Laila had visits from each of her her grandparents, all of her aunts and uncles, most of her cousins and a few of her very best friends.  We didn’t plan it that way, it just happen.  Well, God made it happen.

We called our parents and Tammy and gave them the option to come and say goodbye to her since we had decided to have her cremated and we knew we would never see her physical body again.  I carried her poor little body and put her on the stretcher when the funeral director came.  One last time cradling her and carrying her.  Now she carries herself which is beautiful comforting thought.

Two weeks ago today we watched our daughter be wheeled down the sidewalk on a stretcher and we never saw her again.  I honestly still can not fathom it.  I cried myself to sleep and slept all night from the exhaustion of it all.

The days that followed have been a blur.  There was funeral planning and baseball games and 8th grade graduation.  There are tears and sorrow and unbelief of reality and beautiful reminders of God’s faithfulness.  There is grief and anger and joy and sadness.  It is all there.  Sometimes within minutes of each other.

This is our story and we claim it as beautiful.

Hebrews 12:1-3 Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart.


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.