Oh… how I wish I had updated sooner.
Because, if I had I could have told you about Grace and Kev’s awesome Spring Break road trip to Nashville. I could have told you how Grace was able to celebrate her Senior Prom with all her sweet friends surrounding her. I could have told you how she was able to enjoy a beach weekend with some of her best friends… and how they laughed and giggled, and she left never feeling the void of the senior year she missed. I could have told you how Finn earned the character trait of “Patience” at school this year, and how his teacher talked about Finn’s amazing ability to patiently wait for God’s plan. I could have told you how Kev took Grace to renew her driver’s license that had expired when she was sick, and how she was able to once again feel that freedom and independence.
I could have told you so many wonderful things.
But instead I waited. I think a silly part of me was worried I was going to jinx it with telling all the good news. I also think a part of me was always holding my breath waiting for what was around the corner. That’s what illness does; it changes the way you breathe. You never breathe the same again.
We were so blessed to celebrate Easter with my family at Red Sands Ranch this year. The theme of the weekend seemed to be “it’s so good to see Grace being herself again”. In a way, it was a magical weekend. But once again, I wish we had known how to enjoy it. I wish we could go back and soak in every single minute.
We came home that Monday and she had a sore throat. We took her to the doctor, but she never fully recovered.
We kept hearing the same things from her as last summer, “I’m just so tired”… “My joints hurt”… “I don’t think I’m up for that today”.
By the beginning of June, we realized she had relapsed. We went back to the doctors for their opinions, but honestly, we weren’t ready to hear what they had to say. Since she relapsed so quickly (she spent about seven weeks in remission) they say she’s now most likely “chronic”. We are still choosing to 100% believe she’s not chronic… we are choosing to believe she will fight this and win.
There’s a new treatment that was just published months ago. Our doctor said they aren’t calling it a “cure”, but it’s the closest thing they’ve found. Out of 200 participants who finished the study, 183 are in 18+ months of remission (and it was an 18-month study at publication). The negative… it’s incredibly hard on your body. Many can’t finish the treatment.
The docs talked to her about different treatment options. It’s surreal seeing your 18-year-old make decisions that your 40+ year-old self never had to make. She so boldly decided to “go for it”, even after they told her how very sick the medicines will make her body.
Depending on how her body tolerates it, it’s estimated to be a 4-6 month treatment. She has to build up slowly, and take blood draws weekly to make sure her body is handling the meds.
Months ago, my sisters promised her a trip when she “beat” Lyme. They had initially said Disney, but in April Grace knew she wasn’t quite up for that yet so she decided on a cruise. We were so hopeful the beginning of May when we booked it, that we never even bought trip insurance.
Unfortunately, Grace relapsed before the cruise we planned for mid-June. The Monday before the trip, she had to go for bloodwork and on the way home she immediately told me “something doesn’t feel right”. She couldn’t bend her arm. We were assured it was nothing, but as the week went on, she kept feeling pain in her arm to the point that every 30 minutes she would scream out in excruciating pain. She described it as an electrical current running from her arm through her body. A doctor’s appointment that week sent us to the hospital where they ran a scan and found they had “blown a vein” on that blood draw, and a clot was sitting on a nerve, causing the constant pain. Fortunately, the clot wasn’t in the vein or she would have gone in for emergency surgery. Since it was outside of the vein we just had to sit and wait… and watch her hurt.
It’s amazing what pain patches, nerve medicines, and sleeping pills will do. With a lot of prayer and a lot of meds Grace was able to go on that cruise with my sisters, my niece and myself. It’s amazing what getting away and breathing some fresh ocean air will do to heal the soul. It was a celebration of sorts... her last hurrah. She knew what she was facing when she got home… the new treatment that would make her so sick. I’m so very proud of her for so boldly going to celebrate the now, and not worrying about the tomorrow.
Because of some medical issues when we got home, Grace wasn’t able to start the new treatment. We were disappointed, but once again were reminded of how God’s timing is so much better than ours.
Because the next week we got the call that my mom had a stroke.
If you know my family well, you know that we’ve always described my dad as our rock… but we’ve found these last few weeks that our mom is our glue.
On Sunday, July 7th Grace had one of the worst days she’s ever had. My mom called to check on her that night, and of course I used her shoulder to cry on.
My last memory of my mom is that night at 10:30 when she and dad brought some lotion over that she just knew would help Grace’s joint pain. We were laughing as she had her head stuck out the car window still talking, as dad drove down the driveway.
The next morning, I got the call.
To be honest, I haven’t written since then because I didn’t feel like I was in the right head space. Grace’s relapse, and mom’s stroke have hit us hard. Harder than Grace’s initial diagnosis. I had a friend that has walked this journey before tell me recently “relapse is harder because you know what you’re in for. You’ve gotten a taste of normal, you’re tired, you're worried, and you’ve lost most your support”.
And to be honest, I still just can’t imagine doing this without my mom.
They didn’t give us much hope of mom surviving the first week after her stroke. I now know it sounds silly, but one of my biggest burdens was thinking that mom wouldn’t ever see Grace well again. I know how she worried about Grace and how faithfully she prayed for her. I knew our last conversation was me crying to her about Grace suffering with so much pain that day.
God answered my prayer in giving Grace a good week the week following mom’s stroke. Grace was able to go visit mom and love on her. My mom (Gogi) had bought Grace and Allison the same Bible Study so the three of them could read it daily. Grace was able to come to the ICU and read the Bible study to Gogi that week. Since that week, I have had such peace knowing that mom would know Grace was ok after hearing her read the Word of God to her at her bedside.
But I still don’t know how I’ll do this without her.
Last week Momma was moved to TIRR inpatient rehab. It’s the same place where my dad went in paralyzed after a car wreck, and they called him their “miracle” when he walked out seven weeks later. It’s the same place we discussed placing Grace when we thought she would need rehab last fall. It’s a place so very dear to our hearts.
Grace started her new treatment last week also. She spent several days hugging the trashcan and unfortunately threw up most the meds she was given. A couple days later they had to take her off the treatment because her body just wasn’t handling it. We met with the doctors Wednesday and they’ve changed the med schedule to try to make it easier for her body to tolerate. They are still convinced this is the best treatment for her long-term success.
As I mentioned before I was afraid to write because I just didn’t know if I was in the right head space, but I now believe that I just need to live in, and share the space we’re in… the sadness… and the hurt… and the anger… and the desperation… and the one thing we can cling to, the belief that once again His plan will eventually be better than ours. Honestly, today that’s much harder to believe than yesterday.
But we still choose to believe it.
And I’ve also hesitated to write because I just haven’t had anything uplifting and spiritual to say these past couple of months. But I will say this…
Sometimes life is just going to suck. And sometimes you’re just going to have more tears than smiles in your house. And sometimes you don’t think you can handle one more thing, and then one more thing happens and you realize you can, with Jesus by your side. And sometimes you will stay up all night crying and and asking God “why?”... and maybe you won’t ever know the “why”, and that’s ok, because He does. And sometimes you’ll wonder why an 18-year-old has to endure all she’s had to endure, and then she’ll find you in your bed crying and come wrap her arms around you and you’ll realize “she’s stronger and more faithful than I’ve ever been… and maybe that’s the blessing in all this”. And sometimes you’ll look at your 12-year-old and worry how this is affecting him, and then he’ll come home with the “Joyful and Optimistic” awards from camp and you’ll realize “God’s got him”.
Sometimes you just won’t be able to handle it, but God will.
So right now, we’re living our mantra of “day by day”. We don’t know what tomorrow will hold, but what we do know… without a doubt, is God’s got us in His hands today, and that’s all we need to worry about.
And maybe that’s the beauty in all this… maybe that’s all we ever needed to worry about.
Not college. Not high school diplomas. Not GPA’s. Not sports. Not jobs. Not bank accounts. Not insurance. Not even lab results.
Not anything other than today.
And even if today stinks, He’s still got us. He’s still making it a part of our perfect story. And even if we never wanted this to be a part of our story, He’s going to make it so beautiful that our hurt and confusion will one day turn to thankfulness. It’s all working for His good. We truly believe that.
God is still so good… even when today isn’t so good.
Kev, Bec, Grace & Finn
“The Lord is my strength and my defense; he has become my salvation.” Psalm 118:14
Momma: Please, please pray for my momma. We so desperately need her to heal and come back to us and be our glue. Not sure how we do life without her.
Grace: Please pray her sick body can take this new treatment. The past few weeks have been rough. We’ve seen her suffer through fevers, seizures, nausea, joint aches, and all kinds of ugly stuff. The doctors tell us the Lyme is definitely in her neurological, muscular and optic systems. Praying this treatment will work, and she will find the long-term remission we are praying for. It’s especially a hard time of year knowing she should be heading off to college, but will once again be stuck here fighting Lyme.
Our Family: The worst thing I’ve ever experienced is watching my child be sick. Aside from that, the only thing that has ever hurt as much is knowing my momma is sick and not being able to be by her side. She’s been by my side my entire life, and now knowing I can’t be there hurts more than anything. Praise Jesus for my sisters, my cousin Angie, her daughter Kate, and our Jo Beth that have taken my place and let me know that she’s being loved so very well.
Family: Nothing like it. And family doesn’t just mean those that are related by blood… but those that love you like no one else.
Doctors: A new doctor has come on our team that is battling Lyme disease himself and has gone through the same treatment as Grace. He and Grace seem to speak the same language, and he immediately put her at ease. Such a blessing.
Kev: I don’t know how he’s doing it. Sometimes I wonder why he’s not running out the front door and never coming back. He has taken care of us, loved us, loved my family, and remained our everything through it all.
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