“He makes everything beautiful in its time.”  Ecclesiastes 3:11

My sister sent this Bible verse to me a couple of months ago.  I’ve poured over so many verses these last few months, but for some reason this one just seemed to stay in my heart, and in my mind, constantly these past few weeks. 

Maybe because I’m trying to look so very hard for the beauty in the ugly right now.  Maybe it’s because lately it’s been easy to focus on the ugly, and I need to so desperately see some beauty.  Maybe it’s because I’m struggling, and I needed to be reminded that my God will not only make things beautiful… but the most important part of the verse is He will make them beautiful IN ITS TIME. 

Maybe not tomorrow, maybe not next month, maybe not next year, or maybe not even in our lifetime… but IN ITS TIME. 

I know and I believe, because He tells me… It will all be beautiful. 

Grace’s story will be beautiful.

But oh, how my earthly mind and body are ready to see the beauty in this.

Grace’s doctors put her on that modified med schedule, but unfortunately it just continued to make her sick.  After six days of non-stop throwing up and migraines we ended up in the ER and they put a halt to all meds for a week just to give her body a chance to recover.  I can honestly say, I’ve never seen someone so sick, and I’ve also never seen someone so brave. 

After much discussion, they decided to have a port inserted in her chest for her to receive her meds via IV.  This will bypass her gut and help cross the blood/brain barrier.  This will also hopefully give her some time to heal, and gain strength before we start back on the trial treatment again. 

The timing of all this was hard.  It was when all her friends were leaving for college.   It was when SHE was supposed to be leaving for college.  It was a time when we couldn’t get on our phones and not see a cute dorm move-in pic, a sorority rush pic, or a first day of school college pic.

It was during this time that we scheduled the surgery to have her port placed, and Grace looked at me and said, “I’m really ok with all of this… but do you think I’ll have a scar when I wear a wedding dress one day?”.

And there’s the ugly. 

There’s when the ugly part of me came out… and to be honest, it was one of the first times I’ve just been angry.  I was angry that this is her path.  I was angry our tears weren’t from leaving her at her dorm room, but from facing another surgery and another treatment, that we could only hope would work this time.  I was angry that I couldn’t do anything to take any of this away from her.  I was angry over the guilt I feel that I still KNOW and BELIEVE that God is creating this special path for her, but not liking it at the same time.  Angry that life just wasn’t supposed to be this way for her.   

As many of you know, Grace had a PICC line placed last December for treatment.  Generally, a PICC line stays in a maximum of six months for treatment.  We learned one of the advantages of a port is that you can keep it in a max of ten years.  That hit us hard when the doctors talked to us about it.

Ten years.  

She’ll be 28.  She’ll be older than I was when I even had her.  What they didn’t say, but what we knew, was that this meant long term care.  Every time we see those beautiful scars and bump on her chest where they placed that port, it’s a reminder of how very sick she is… and how long they feel the treatment will take.  Even if she’s better in a year or two, they will keep the port in for years just in case of relapse.  That hurts. 

That’s ugly. 

But here’s what I know (when I honestly don’t feel like I know much at all right now) … He will make everything beautiful IN ITS TIME.  That scar on her chest will be beautiful one day.  I can only pray she will wear it with pride and joy, and when someone questions her about it, she will share God’s amazing faithfulness with them.  I can only pray that the man that we pray for even more now than ever before, that meets her at the end of that aisle one day, will see that scar and will only see strength, courage, and an indescribable faith in the woman that wears it with such grace.    

I know HE will make that scar beautiful in it’s time. 

It’s funny to think even just a year ago the things we were worried about.  Missing senior year.  Missing Senior Prom.  Missing her first year of college. 

When we got the initial diagnosis of sickness, honestly, we just felt like it was going to be a blip.  We thought we would just pause life for a year, and then go on as normal.  We knew we were facing some tough times, but we also thought at the end of it, life would go back to normal. 

But now we worry about so much more.  We worry about the long-term effects of the meds we are constantly putting in her body.  She now takes 42 pills a day + her IV meds.  We worry about the life-long effects of the illness.  We worry how she will mentally adjust to the world and life once she is healed.  We worry how she will ever fit into a normal world when she’s not so normal.  We worry not only about the health that Lyme stole from her, but the carefree girl it took too.  We worry how she will ever leave home and how we will ever be able to sleep at night worrying about her.  We worry about the man she will marry, and we can only pray he has the strength to love her and take care of her… because we know she will need the extra care, but we also know she will be worth it.  We worry about the kids she will have one day and how this could possibly affect them.  We worry about so much more than that stupid senior year.

But while we worry… here is one thing we know, and hold close in our hearts…  He will make it all beautiful in its time.  We just pray so hard it’s during our time and we can witness the beauty.

And to be honest, we already are seeing some of the beauty.  We just have to make sure and look for it.

We see it in our precious twelve-year-old that has now learned how to administer IV meds and even how to entertain his sister throughout the process.  Finn’s heart holds a compassion and a patience that most kids his age haven’t had to find.  He loves her.  He celebrates with her.  He worries about her.  He takes care of her.  God has put a beauty in Finn that is indescribable.  Sometimes just watching him with her can literally take my breath away.  That is a beautiful gift we are given often on some ugly days.

We see beauty in our home healthcare nurse, Courtney, who we had prayed so hard for before we even met her.  It’s hard to explain the anxiety you feel before you get your home health care nurse.  You are inviting these people into your home, to be a part of your family, and to take care of your child.  And each time God has delivered just the right person to our doorstep. 

We see the beauty in our medical team.  One of the major things that helps calm my fears is knowing, without a doubt, that we have the absolute best medical team on our side… and each and every one of them has fallen in love with our Grace.  They all have a special interest in her.  They all check on her.  They all want the best for her.  They all believe in her.   

We see the beauty in the fact that Grace basically skipped the shallow end of the pool.  She’s been forced to dive in the deep end.  Her life from here on out won’t be about the “minors”.  She’ll have a different measuring stick than I ever had.  Silly things that mattered to me at her age, won’t ever matter to her.  She’ll wake up each day just thankful she’s alive.  Happy she has the spoons available to take a shower.  Grateful her God has given her another day to go out and make a difference.  Grateful that God has shown His grace once again to make this day so very beautiful IN HIS TIME.

We believe. 

Her story will be beautiful.

In HIS time.

Much love,

Kevin, Becca, Grace & Finn

#byHisGrace

PRAYER REQUESTS:

Grace:  Please pray for her beautiful, broken body.  Pray for the new meds to work and not make her sick.  Pray for hope… pray for endurance… pray for her continued belief in God’s beautiful plan.   They just started her on more oral meds in addition to the IV meds.  Pray her body can take them.  Pray that on her bad days she looks to God for her strength.  Just last week we took her to an appointment and found out she’s lost eight pounds this last month (if you know Grace, you know she doesn’t have much weight to lose).   She’s just so nauseous all the time.  Please pray for her body to heal. 

Finn: How I wish Finn could be a normal twelve-year-old.  How I wish each day he could walk in the door and know what to expect.  How I wish I had 100% energy to give him each day.  Please continue to pray for Finn as his world continues to be rocked. He’s handled it like a pro, but I still hurt knowing what he’s going through, and wishing life could just be normal for him.  While I know Grace is covered in prayer, I often worry that Finn is forgotten.   

Momma:  Momma came home on her 80th birthday!  What a beautiful celebration that was (even though we weren’t able to be there because Grace was having a bad day).  “There’s no place like home” she says… but we also know they are adjusting to a whole new life.  She’s now in a motorized wheelchair. We are still so desperately praying for her left side to start working again.  She has fulltime care, and we are so thankful how those nurses have become a part of our family.  Please continue to pray for momma’s healing. 

Friends:  It seems we have so many around us struggling with their health.  Please pray for them to get the proper diagnosis and treatment.  Please pray for the right doctors to see them, hear them, and help them.  Please pray for insurance to come through.  Please pray for them to be healed. 

Chiari:  Many of you have asked… and the Chiari is still there.  Her neurosurgeon has told us he’s ready to operate when (and if) we are ready.  Right now, we are just trying to get her body to heal.  We are hoping to get her in shape where she could even handle a brain surgery.  She still shows many symptoms related to the Chiari, but we are always weighing the benefits vs. the risks of the surgery.  As of right now, the Chiari is on hold.  We are just focusing on fighting the Lyme.

Other Lyme Patients:  One of the ugliest parts of Lyme we’ve seen is how many we’ve met in this community that just can’t afford the treatment they need.  I would estimate 80% of the Lyme patients we know can’t see the doctors, or get the meds they require to heal.  Please pray for those to somehow find the resources they need to be able to heal from this horrible disease.

Dads:  I just told a friend that’s started her journey of sickness the other day how one of the hardest parts of this has been watching Kev.  Dads and husbands want to fix things… and when illness comes, it’s one thing they realize they just can’t fix.  I’ve watched Kev deal with it with Grace, and now I’m watching my dad try so desperately to take care of my mom.  When illness hits, it changes you.  Part of the mourning is mourning the people you were… because, regardless of the outcome, you know you’ll never be the same.  Please pray for all the dads and husbands out there trying their hardest.  Please pray for Kev and How (my dad).  They are trying to juggle doctors’ appointments, taking care of their families, working, and paying bills.  I honestly don’t know how they do it.  I just know I wouldn’t want anyone else by my side.

CaringBridge:  You might have noticed we aren’t updating as frequently.  Grace has chosen to keep this part of her journey more private than before.  I never post on CaringBridge until she asks me to, and I know she is ok with what I have written.  I believe part of this is because of the lessons she learned the first go around, and part of this is because she has a hard time reconciling the fact that we are back here again.  She has discussed with her counselor writing her story.  I think it would be amazing.  I think it would be life-changing, not only for her, but for so many.  I think it would give purpose to these last couple of years.  I think so many would love to hear her journey… and the beauty and the rawness behind it.  I pray God gives her direction in how to use this time in her life that will give it purpose and help others.

PRAISES:

Doctors:  As we’ve learned this last year, finding the right doctors is half the battle.  We thank God for leading us to the right doctors that we know love our Grace and will take care of her.

Momma:  We start by thanking God for keeping Momma here with us.  We thank Him for keeping her sense of humor, for allowing her to continue to text the grandkids silly memes, for her remembering birthdays, All-Star games, and who brought her dinner (especially lemon bars).  We thank Him for keeping Gogi here with us longer… because He knows we still need her so desperately. 

Small Blessings:  We thank God for those small blessings we see every day.  A friend asking us to lunch.  A neighbor dropping off cookies.  A friend continuing to text us even when she isn’t receiving texts back.  Old friends driving in town for dinner just to check on us.  People loving us when we aren’t able to love them back very well.  We are so thankful for our small blessings… because at the end of the day they add up to so much more than you will ever know.