The “likes” went a little crazy when I posted about our Miami trip on Instagram. Don’t worry… I love a good picture too. The scenery behind us was the most beautiful beach I had ever seen and I’ll be the first to say that my eyes gravitate to the “pretty” pictures in my feed as well. It’s easy to “like” something and keep scrolling. But what I love even more is when we use social media to tell a story behind the posts we share.
It’s taken me a while to put words to what I wanted to share about our trip to Miami. And honestly I think sharing too early would be a disservice to all that God is and was doing in our hearts and our minds. Renewing is a tricky process. Like a rubberband being stretched, you just want to return to the way it was. But eventually the band is stretched so far and it will never return to what it once was and sometimes, it eventually breaks. Leaving you to get a new band. Except when I think about God giving me a new band (a new trial or lesson to be learned) I think He gives me a better one. One slightly bigger, thicker and more sturdy under pressure. God always gives good gifts.
It all began in January 2018. An occasional complaint about wrist pain in my youngest daughter. So sporadic and unpredictable that it was easy to overlook and assume it was growing pains. Maybe it was. By Christmas 2018, the pain became a little more noticeable and soon became a deterrent from early bedtimes. Soothed with a rub and a kiss, the little one would soon stop complaining and drift to sleep. Once we put her in our bed and after that, the complaining was worse. We were certain this was an attempt to sleep with mommy and daddy. Nothing more. Come the end of January 2019, we left for Mexico for our first trip sans kids since our honeymoon. We left the babysitter with the knowledge that the little one had been complaining about her wrists, so rub them if needed, sing her a song and for some reason, she likes Vicks Vapor Rub. It calmed her.
We returned from Mexico and a few nights later, we found ourselves with what seemed like a different child. No longer was it mild pain in her wrist but gut wrenching screams that came as she wallowed in pain, now in her wrists, fingers and elbows. Eventually traveling to her knees. My little girl who once loved holding my hand, could no longer stand it when I held hers because of the pain. She was up 4-6 hours every night, falling asleep in pain and awaking with screams of “Mommy, it hurts!” I would watch her play during the day and stiffen her arms, tighten her fingers and rub her knees while she tried her best to be her normal self. But at night, it was too much to handle and the only thing she knew to do was cry.
Bloodwork showed that our baby girl had some abnormalities and we were told by the pediatrician that she either had lupus, arthritis or leukemia.
I think I cried for 2 weeks straight. I wasn’t even sure of what I was feeling. I was confused. I was broken. I was scared. I was at a loss of control. But I am also a fighter.
I went into go mode. Every mom should know what I mean. That instinct that kicks in and places you in a position of authority over your child that you are willing to do whatever it takes to make it better. I went through my kitchen cabinets and threw out every thing that had ingredients I could not pronounce. I rid my cabinets of gluten, peanut butter and threw out anything with diary. Suffering from an autoimmune disease myself, this was something I knew. But like most moms, I had gotten lazy. Healthy food is expensive. It requires planning and time and sometimes throwing a granola bar at them two to three times a day is all you have the energy for. Until you get smacked in the face with words that you never want to hear. You’re sick.
For the next two weeks amidst the feeling of helplessness, guilt and slight panic, I did what I knew how to do. I fed her well. I sat with her for hours to get her to eat one bite of carrot. I bought creams with hemp and arnica and God only knows what in them. I shoved supplements down her throat and I read books. I read a lot of books about health which reminded me of how strong our bodies are. How God made us to heal. My strength came through knowledge and I began to understand why knowledge is POWER. We began to pray over her body, her antibodies, her stem cells, her angiogenesis (basically a cool word for one of the ways our body heals itself). We also worshipped.
Weeks prior, I Raise a Hallelujah by Bethel Music came out on YouTube. We had watched the video and listened to the testimony of Jackson several times. For some reason, my youngest took to this song and she would sing it, request it and raise her little hands in worship. It wasn’t until we were facing these diagnoses that I realized this song was for her too. Every day, some times a couple times a day, we would sit and worship. She was happy and full of joy while my momma heart wrestled with hurt, but yet fought for my thankfulness because deep down I knew how blessed we were. She gave her all when this song came on. She wasn’t worried, why was I? At night when she would cry, she trusted us as her parents to help. How much more could I trust My God to help her is the thought I would tell my heart. Every night we quoted our family vision statement which includes the words “by His stripes, I am healed.”
I clung to these words as we laid her down not knowing what the night would bring.
For the next few weeks we saw drastic change in our baby. Less and less complaining. Less tightening and stiffening during the day. Her tastebuds began to change and we went from 2 hours of bribing to drink the smoothie to 30 minutes of persistent encouragement. The child that lived off of three main food groups (sandwiches, peanut butter and yogurt) began to ask for a banana instead. We knew God was working. Her sleep began to return to normal and pretty soon she was almost symptom free.
But we still had these diagnoses hanging over our heads with very little information given.
Spiritually, I felt myself wavering. One minute strong and full of faith knowing My God was in full control. The next minute, I was wrestling with fears, crippling thoughts and scenarios that haven’t even happened. I knew in these deep, sometimes dark moments that I had to be careful not to play victim. I had to learn how to fight for my baby in the natural and the spiritual but also how to trust in Him and not panic towards the woe is me attitude that can creep in when faced with a crisis. Our adrenaline kicks in and sometimes this can take us in unknown directions. We can fight or flight, we can control, or we can become a victim, allowing our words, our every thought to be about the diagnoses, the problem or the trial we are facing. We can ignore our husbands. Ignore our kids. And miss out on the life that is happening all around us.
We fixate on the problem, forgetting how blessed we are, losing sight of the fact that all around the world, children are LIVING and THRIVING with all sorts of challenges. Playing the victim will leave us always feeling that we are alone. No one cares. Or that no one understands how bad it really is.
But God. He was so faithful. For the next few weeks, I texted family, old friends and even new friends who I knew would pray. Some even reached out to me asking if things were ok because God had placed us on their mind (how cool is that?!) I watched as God opened the door to new relationships in Florida and how surrounded we were by people willing to lay hands on our baby, guide and direct us to new healthcare professionals and feed us spiritually with encouragement and Truth.
One of those relationships pointed us to Miami.
Which leads up to the beautiful Instagram pic of the clear beach and hustling city that seemed like so much fun. And it was. We knew when making the doctor appointment that an extra day was needed to be tagged on to our stay so that we could travel and enjoy a day as a family. Forgetting for a moment all of the weeks we laid awake in worry, the frantic wake up calls of a screaming child and really spend some time together doing what we do best… being mom and dad.
We scootered around downtown Miami, we ate Whole Foods with the business people, we saw the bay and we spent the afternoon at South Point Beach which had the clearest water I’ve ever seen. We waved at cruise ships as they left the port and we ate the best dairy free, gluten free pizza we’ve ever had. It was a good day.
The following day we spent the morning at the Pediatric Rheumatologist that had been referred to us through some new friends and a series of God moments that led up to the decision to make the 5 hour drive. This doctor was a God sent. He was so good with our baby and even better with these two parents who were eager to know what was going on.
We knew she had been almost symptom free for two weeks prior. We knew that the diet changes, the chiropractor, the prayers, the worship had all changed things. We knew we were seeing a different child than we had just a few weeks prior. But we didn’t know this doctor would tell us that she was…
Well… Pristine was his exact words.
He told us some other helpful information and some additional tests we can do to find out more but he suggested we not do any further testing at this time.
We got in the car and even now as I am writing this blog, I still don’t have words to explain how I felt. Thankfulness and awe would be the closest thing I could use to describe my initial thoughts. Laying down the fears of lupus, arthritis or leukemia was a weight taken off my shoulders and when I looked at my baby, I no longer felt fear but extreme gratitude. But in this surreal moment, I still had questions.
Not questions of what else is it or should we keep trying to figure out what it was. But questions of why us? Why were we so lucky?
We’ve seen multiple healings, misdiagnoses, and God’s evident Hand over our lives. But I think this time I had secretly thought, our luck was over. This was it. This was going to be the blow that takes us down. This was going to be the story that God uses to test our faith. To search our hearts and stretch us in a way that only time would tell if we would relent to fear or rest in faith.
I want to be real in my feelings. Vulnerable even, because this is all I know to be. Fully transparent because when I am, God always uses it to help someone else who is facing life when it’s hard. Because life is always full of hard and good and all the in between and if we don’t use our stories to be authentic vessels for His Glory we will leave the world to believe that Christians are a group of people full of false strength and hollow perfection.
So in these thoughts, I began to ask God to prune me. Essentially, I think He already was, but when I feel my heart wrestling, I don’t want it to be wasted. I want it to be used.
So, why us?
I know this to be the same question I was left asking myself that day we left the office when those diseases were first spoken. Why us? The guilt and shame. Was it our fault? Could we have done something to stop this? Why her? She is only four.
And here I was on the other side asking myself the exact same question.
I know countless people that need healing. I know of brain tumors in babies and high school friends who have been fighting for their lives for years. I have seen tragedy hit where lives were taken far too early and I still can’t answer these questions but I know that on both sides of the good and the hard, we are asking ourselves this very question.
Before we went to Miami, I had a moment where I had to ask myself, would I still choose to believe God is good if what the doctor told us wasn’t. I spoke it out loud and I answered with a residing yes. I hit my knees in prayer and I told God I would accept whatever He has for us, even though I felt so weak and incompetent to carry anything more.
I think this is true surrender.
But then like any warrior, we also slayed. We never stopped praying BOLD prayers. We spoke to her joints and declared that her body work as it was designed. We made her repeat Bible verses and claim her own healing. We called out in her what we knew to be True… that God was in her and had made her for His Glory.
I don’t know why we walked away with good news and so many others are still facing it. I don’t know why she had what she had and all of a sudden has no more. But I know God was in both.
God was protecting us from the fire but also standing with us in it.
Asking why on both sides of the good and the bad we face, forces us to seek. When we seek, we are promised to find as long as our questions of why are directed to the One who can answer. I think our questions of why when directed to the One who knows, shows our submission to Him. It’s a question that may not ever be answered on this side of heaven but a question that will surely push us to know Him more when asked with a pure heart.
Because all of our greatest why’s can be answered in the Greatest Who and that is the Peace that surpasses all understanding.
I believe that God delights in our whys, our seeking, our willingness to lay down our need to understand… especially when we place our trust in Who He is.
So keep asking. Keep seeking. Keep believing.
One day all of our many why’s won’t matter and all of life’s greatest questions will be answered when we see our Maker face to face. We will delight in His sovereignty and all understanding will be revealed in the restful place of finding where we were always meant to belong. Home.
We don’t yet see things clearly. We’re squinting in a fog, peering through a mist. But it won’t be long before the weather clears and the sun shines bright! We’ll see it all then, see it all as clearly as God sees us, knowing him directly just as he knows us! 1Corinthians 13:12 (MSG)
Debra Myers4 years ago
Hey Tiffany, Laura told me about your blog. I had no idea. I just read your post and was reminded of the struggles we went through with Keith. I’m ashamed to say I can’t say I was as faithful as you. We do give God the Glory for his healing even if it was on the other side. Bless you and your family.
Wade and Tiffany Nagy4 years ago
Hi Debra, I think of your family so often, especially when I see Laura’s post about her daddy. I think we often see our lack when we face a trial, but God sees our faith even if it feels we are barely hanging on. There is more to Keith’s story on earth living through each one of you… I am praying for your family.
Nicolitalia.Com4 years ago
Woah! I’m really digging the template/theme of this site.
It’s simple, yet effective. A lot of times it’s tough to get that
“perfect balance” between superb usability and visual appearance.
I must say you have done a very good job with this. In addition, the blog loads extremely quick for me on Firefox.