If I tried to write down all that we have learned about ourselves, about others, and most importantly about our faith these past nine months, I would have to write a book, and not a CaringBridge update. These past months have definitely changed us. In some ways I wish we could go back and erase all of it, but I also know we will eventually come out better… and who God needs us to be. We like to call some of what we’ve learned our “Lessons in Lyme” and I thought I would share just a few with you…
1. Tick Bites. If you ever suspect you have been bitten by a tick, save the tick if at all possible (this could be useful in the future) and head to your doctor and ask for a 30 day prescription of Doxycycline. It pains me to think that all of this could have been avoided with Grace if we had just known… and had just had the right medicine. You will read about the bulls-eye rash, but the majority infected with Lyme will never see the bulls-eye. Don’t wait for the “text book” symptoms, or even depend on the blood tests (as of now they are only 30% accurate and only work in a small window of time), because in so many cases Lyme doesn’t follow the expected check list. We did find the tick on Grace. We didn’t keep it. We didn’t see a bulls-eye rash, and we didn’t even know to look for it. We didn’t get the right medicines or diagnosis in time. We just didn’t know. If your doctor refuses to listen to you, or give you the prescription, find a new doctor. There’s no harm in taking Doxycycline. As a matter of fact, they give it out freely for acne, so I’m not sure why they are so reluctant to give it for a potentially life-threatening disease.
2. Keep Living. I honestly believe that if you asked Grace she would say the greatest tragedy of this illness would be if people quit volunteering, quit serving, and even quit attending camps throughout Texas. She has such a heart for service, and such a heart for camp. We’ve had many ask us if we think they should send their kids off to camp this summer and without hesitation we say YES! Finn is already scheduled for two weeks this summer. I believe in my heart and have a true acceptance that this was just meant to happen to Grace. This was meant to be her story. That tick would have found her wherever she may have been. There’s beauty in the fact that it happened when she was serving. We’ve met so many through Texas Lyme Disease Association that contracted the illness literally miles from our home. It can happen anywhere. Not sending your child to camp because of fear after hearing Grace’s story is like not getting in a car after hearing someone was in a car accident. Keep living. Keep serving. Keep going to camp. Fear is not from God, and don’t let it rule you.
3. You don’t miss normal until it’s gone. I never really appreciated this until these past nine months. There have been so many nights that my prayer has just been for one day of “normal” … or even to have the opportunity to go back to one day of normal and really appreciate it. I would give anything to be waking up early to make Grace’s breakfast and yelling at her in five-minute increments that she’s going to be late for school. I wish our biggest stress of the morning was that we forgot to wash her practice clothes. I wish Grace was worried about an upcoming Calculus test, and not upcoming blood tests. I would give anything to see her at the kitchen table working on homework late at night. I would even love to hear she and Finn bicker again. All these things that I never really appreciated, I wish I had just one day to go back and really LIVE in those moments and appreciate the blessings in them. We’ve learned that normal isn’t so bad, especially once it’s gone.
4. God is good ALL the time. At the beginning of this journey we prayed for Grace’s healing not only for her broken body, but we wanted so desperately to be able to go and tell her story of how so many prayed for her, and how our mighty God healed her. But if you’ve followed our CaringBridge I hope you’ve seen how God has been so very good to us, not because He’s healed us, but because He’s never left us. Somehow I missed that very important message in my Christian walk. I had really only seen God glorified in the healing stories, and I had never seen Him glorified in the hurt and the broken. I had a friend recently share with me how her baby was born with life threatening heart issues and she had a friend tell her, “you have to have the faith that God will heal your baby.” And her response was, “no… faith comes when I don’t know IF He will heal my baby, but still believing He will be there no matter what”. Wow. That is truly what faith is. And I thank God for teaching me that, and showing me His beautiful mercy not only on the good days, but most importantly on the bad days… when I really needed Him.
5. Along with Sickness comes a Million Decisions. No one told me this. I thought your decisions were made by your doctors, and through this we found that most decisions have been left up to us. Our last major decision we made was that Grace will be staying home next year instead of leaving for college. This one hurt. We know without a doubt it’s the right decision, but it hurts knowing that this disease not only took her Senior year from her, but will take this from her as well. We know she needs time to heal. She needs time to find her new normal. She needs some time to get in a routine and get back into “life” before she heads away from home. The blessing is we get her another year. We pray this next year will prepare her for the very special path we know He has made for her.
6. Your mind needs to heal as much as your body. Before this, if I heard my friend got a good test result back I probably quit praying so diligently for them. I figured if their body was healed then they had won the battle. But now I know so much of the battle comes after the physical healing. So much of the struggle is trying to figure out your place when life has moved on without you while you were fighting for your life. It’s reconciling the fact that one day at the age of 17 you woke up and didn’t know if you were going to live another day, and then learning to live with that fear. It’s learning to live life in your new normal. It’s knowing that smells can trigger you and take you back to a place you can’t escape. It’s knowing that just hearing the word “Lyme” can cause paralysis in your body. It’s knowing that your nights are filled with nightmares (which are considered “good” since you’ve been having night terrors) that are filled with scenes of being left behind. It’s learning that sometimes it seems easier to heal the body than the mind.
7. Needing Christ is a blessing. The other day I had someone share a quote with me, “I accepted Christ when I was seven, but I didn’t NEED Christ until I was 27”. I just keep going back to this. Kev and I were both blessed to grow up in Christian homes and accepted Jesus Christ as our Savior at young ages. Both Grace and Finn did as well. But there’s a difference in knowing Christ… and in needing Christ. I can’t say I’ve ever needed Him like I have these past nine months. It’s a different kind of faith that one part of me wishes I had never had to know, and another part of me feels privileged to get to experience. These past months God and I have had more heart to heart talks than ever before. He’s seen more tears these past months than the past years. There have been days when He’s been all I’ve had to cling to. I think all of us have felt the desperation, and the blessing of really NEEDING Him and truly knowing He’s the one thing that will never leave our side.
8. Sickness affects the entire family. Before this I had prayed for so many of our friends that were facing sickness, but I never really knew how important it was to pray for each of their family members by name. Sickness hurts everyone. It hurts marriages. It hurts siblings. As silly as it sounds, it even hurts pets. I never knew how when sickness hits a house it leaves behind so much more collateral damage than I ever imagined. Every single thing is “off” at home and every single person feels it. Our Finn is so brave and so strong, but we can even see how this has changed him. Kev and I so desperately need time together. I guess distance really does make a heart grow fonder… because I miss him. But we know our day will come and believe date nights will return again one day.
I’m going to stop there (even though I could keep going for pages!). God has taught us so much. He has changed us, and I have to believe for the better one day. I still can’t say I wouldn’t go back and change it all, but I’m also starting to realize how very much we needed these “Lessons in Lyme”. Life won’t ever be the same… and maybe that’s a good thing.
Grace continues to heal physically. She’s starting to get pieces of her normal back. A few weeks ago she was able to go to school with a friend to watch her cousin play baseball and then watch her friends perform in a school play. This was the first time she attended a school event without us, and she did great! It was a huge step in her recovery, and she had some precious friends by her side the entire time. This week we bought her a prom dress in hopes that she will be up to going in April. She searches for the normal and needs it so desperately. It almost hurts as I watch her try to put all this behind her. She doesn’t want to be the “sick kid” anymore… she just wants to be “Grace”. She loves when people ask her what she’s been doing, and not how she’s feeling. We are in the process of redecorating her room, because her room just brings back too many painful memories of being sick and being stuck in there.
She’s healing. I have to believe we all are… and for once I feel like her good days are outweighing her bad days.
Finn is healing too. He’s got his casts off and has progressed from a hobble to a limp. He’s ready to run. He’s ready to hang with his buddies. He has the all clear to start running April 16th… so watch out!
I’m still amazed by how these two have handled every single curve ball life has thrown them these last nine months. I’ve learned so much from them.
Kev, Bec, Grace & Finn
“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not harm you, plans to give you hope and a future.” Jeremiah 29:11
GRACE: As she’s looking to the future she’s started talking about writing devotionals, which I think would be AMAZING! The themes always seem to center around “prayer” and “how life can change in an instant”. I think that is so telling… and I think she has a message that could reach so many. I pray for clear direction as she continues to heal, find her normal, and seeks the right path of how God wants to use her in this walk.
DOCTORS APPOINTMENTS: We have several doctors appointments in the upcoming weeks. Praying for good results and continued healing.
FINN: Praying for him to continue to find his strength
BRAIN: We met with Grace’s neurosurgeon a few weeks ago (and even had a wreck in the parking garage as we got there… good times just keep coming!). The Chiari Malformation is still there and we are currently deciding if we want to pursue surgery, or wait until we know the symptoms are undeniably from the Chiari. We are currently keeping a pain journal. At this time, Grace would like to continue to hold off on the surgery and we are respecting that. As she said, “I’m just now starting to feel good and I’m not ready to put my body through that right now.” We pray not only for the right decision, but for peace in that decision as well.
NIGHTS: Night terrors have been replaced with nightmares. While it’s still not a good night’s sleep it is a huge improvement!
CONTINUED HEALING: When I look at Grace and see how far she’s come in her physical healing I still can’t believe it. I’m so, so very proud of her.
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