Why Not Us?

Surreal : marked by the intense irrational reality of a dream

Yep! That pretty much sums it up…the last 4 weeks have felt very surreal. 4 weeks ago today we had plans to fly home from MN and instead my phone rang and I stepped outside our hotel room to take the call. It was Hannah’s pulmonologist sounding very grim confirming that she did, in fact, have CF and was very ill. As I walked up and down the hall of the 4th floor of that hotel, processing the news that we would be packing up that night to head to the hospital for a 2 week stay, I stepped aside to let a family pass by. I remember thinking at that moment that I was having a very personal conversation within ear shot of strangers and how 3 days before I would have been very uncomfortable with that. Not anymore, though.

Our hotel was a home away from home for many patients of the Mayo Clinic. We met them at breakfast and compared appointment schedules, watched them shuffle down for free afternoon soup in their house shoes, heard their own hushed conversations about treatment options, saw them waiting for the shuttles that left every hour transporting them to and from the Mayo Clinic, watched daddies pulling weak children in wagons full of pillows and witnessed more than a few bald heads and pairs of sunken eyes. In that moment it hit me that we likely had a bond with that family and that they had probably had their own phone call at some point in their journey like the one I was on so what did it matter if they heard mine. Funny how such a sizeable shift in thinking can happen without you even knowing it.

I had talked to God often over the last few years about the fact that our family hadn’t really been personally affected by tragedy, severe sickness or death and how thankful I was for that. Tim and I still had both our parents, our children were relatively healthy, we had both made choices that led to us having a strong marriage and we all loved each other. I was thankful and yet I always felt that at any moment this life of relative bliss was subject to change. I’m not a big worrier by nature and I try very hard to reign my thoughts in and not borrow trouble, but I knew that we weren’t special. That there was no reason we should be exempt from suffering.

Why not us?

Why should Frank have to endure so many surgeries that it was hard to keep count…and not us? Why should Conner have a brain tumor that required Amber and him to have to spend weeks in the hospital…and not us? Why should the teenage boy in the room beside us be slick-headed and bloated from massive doses of steroids…and not us? Why should the family with the very sick baby at the end of the hall have to spend more days at the hospital than at home as a family…and not us? Why should we have friends who have had to bury their babies…and not us?

Why not us?

As I walked in church this past Sunday morning I spotted my friend, one of the ones who we’ve had the pleasure of walking beside in life for two and a half decades, and I made a beeline for her. She's my friend, that for some reason unknown to either one of us, is the one I’m most likely to cry with…and I’m not a big crier. As expected we embraced and both burst into tears, neither one caring that we were a captive audience. She held me and patted me and whispered that she wished we didn’t have to go through this, wished that we didn’t have to watch our baby struggle to breathe and wished that she could take away the pain and the suffering our family as a whole was going through right now. I told her I wished she could, too, but then I pulled back and looked at her and said, “But really…

why not us?”

Months ago Tim had planned to start a new series that very morning entitled, “The Struggle Is Real”, confirming yet again the Lord’s relentless attention to detail. I have no doubt that he could have done an amazing job sharing with our people that the struggle is real and we can struggle well without the events of the last few weeks, but apparently God had other things in mind. Suddenly, here we were as “Exhibit A” in the current examples of suffering. Hannah had been diagnosed with CF in MN, Caleb had been diagnosed with CF the week after our return and my diagnosis would be 2 days and a phone call away as well. Now Tim’s message wasn’t a theory or something he had observed on the pages of scripture or in others intimately walking with the Lord. It was a message shared as a member of the fellowship of suffering. 

Do I wish my babies and I didn’t have to become one of the 30,000 people in the US with Cystic Fibrosis? Absolutely! Do I wish Hannah didn’t have to spend hours a day doing treatments just to breathe well? Of course! Do I wish we had immune systems that had the ability to fight off germs instead of falling prey to so many different sicknesses? Without a doubt! But…

why not us?

As my BFF reminded me when we were in the hospital and I was processing the news about Hannah, CF is just a label. It’s a label that helps us identify why we’ve struggled with so many things for so many years. It’s a label that has given us a plan and a protocol for Hannah and will soon do the same for Caleb and me. We’re still the same people and it’s just a label that defines our issues, but does NOT define us!! Will we have hard days ahead? I’m sure we will. There’s a reason they call it suffering! One of my deepest prayers, though, is that we would always remember that God is sovereign and none of this has caught him unawares. We’re going to pray, we’re going to fight and we’re going to struggle well. What we’re NOT going to do is feel sorry for ourselves because really…

why not us?

Tri-Fecta

As expected, we won the trifecta and I, too, tested positive for CF. My genetic testing confirmed I have 2 gene mutations which definitely supports my clinical symptoms and explains my many breathing issues! They said I have a milder version than the kids, but will still need to get set up at the Emory CF Clinic. Thanks for continuing to pray for us!!! It is SO appreciated!!.

Hard and Dark Places

I had a friend text me this morning. She's not someone I see or talk to a lot, but we have a deep love for each other. She sent me a very encouraging note letting me know the things she was praying for us, and for me specifically, and we corresponded back and forth for a bit. One of the final things she said to me was that if I needed someone to come alongside me in the "hard and dark parts" of wrestling with God that she could handle it! I have found myself pondering that all day...

"the hard and dark parts". 

Finding out your daughter has CF is hard. Finding out your son has it, too...starts to feel a little dark. Spending 2 weeks in the hospital watching your daughter fight to be able to breathe well is hard and dark. Seeing her weight dip below 100lbs...was really hard. Learning a new normal is hard and I'm sure will be for a while. I haven't had too many dark parts, but I'm sure there will be more before it's all said and done. Hard parts? We have plenty of those. Just having her get a positive flu swab 2 days ago made me want to scream and hit something!

We've experienced an overwhelming out-pouring of love, encouragement, meals and offers of help over the last 3 1/2 weeks. We stand amazed at the people the Lord allows us to have as part of our community near and far. I know many of those people would totally be there for the "hard and dark parts", but there was something about my friend offering...going there with those specific words...that stopped me in my tracks. 

My friend is well acquainted with "hard and dark parts". She's had to fight her way through many of her own over the last few years and you can tell. The struggle has been real, but she has struggled well. She didn't avoid these spots. She didn't deny they were there. She waded in and did hard work and she has come out the other side with a beauty and a grace she probably never imagined could be hers.

My friend taught me something today. She taught me that a lot of people may offer assistance and genuine care, but it takes someone who has done their time in hard and dark places to not be afraid to go there with others; to name them and call them out! She taught me that these hard and dark places are never wasted and He will use them in my life and eventually allow me to use them to go there with others. My friend made me a little more brave today as I was reminded how she made it through her hard and dark parts and found joy in the midst of it all!!

2 Corinthians 3-5 ~ "All praise to the God and Father of our Master, Jesus the Messiah! Father of all mercy! God of all healing counsel! He comes alongside us when we go through hard times, and before you know it, he brings us alongside someone else who is going through hard times so that we can be there for that person just as God was there for us. We have plenty of hard times that come from following the Messiah, but no more so than the good times of his healing comfort—we get a full measure of that, too."

Thank you, friend!!! You encouraged my heart today and helped make me a little more brave!!!

In Hannah's Words Take 2

Well, we really are alike!!! KK and I BOTH have Cystic Fibrosis!!! So thankful that we have each other!! Some people may say, “that sucks y’all both have it” but really it’s amazing that we have each other to go through life with!!! God knew exactly what He was doing when He created us! I’m thankful God gave me KK as a brother and best friend!!!! Love you lots!!!

FC Twins

These 2 are 19 months apart and have always been best friends! KK once bought Hannah a sign that said something about his sister being his best friend and the lady in the store asked him if that was true and he said, “Yep! And now she has the sign to prove it!”

They’ve always liked to do everything together and now...we have the test to prove it!! Yep, KK’s sweat test came back positive and he, too, has been diagnosed with CF!! He actually says he’s going to tell people he has FC...since he’s dyslexic!!🤪

Truthfully, as soon as she was diagnosed I pretty much knew he would have it, too, based on his symptoms of “asthma” (which it can often be diagnosed as) and recurrent nasal polyps. We KNOW that Caleb is fearfully and wonderfully made and that this has NOT caught the Lord by surprise. We don’t really know what it looks like for him because he is generally pretty healthy, but he will begin attending the CF clinic every 3 months with Hannah starting May 14. 

We SO appreciate everyone’s prayers and encouragement and are so thankful for our community near and far!!! We love y’all!!

In Hannah's Words

This is something Hannah wrote. It is something that challenged me and, I imagine, may challenge you!!

So, as most of you know, on Wednesday, April 3, I was diagnosed with a disease called Cystic Fibrosis. CF (Cystic Fibrosis) is a lung and stomach disease. It can be very harmful to the lungs and cause a lot of damage. CF makes it hard to gain weight because your lungs are working extra hard, so all the calories that go in to your body go straight towards fighting off infection in the lungs, therefore you begin to lose weight or struggle to maintain weight. With having CF I have to be aware of my breathing and my weight so that my body can stay healthy. 

Some people can have a hard time with CF, so that’s why I don’t read about it on the internet. All that does is fill my mind with negative information that might not even happen to me. The night I got diagnosed, I called Kara (my mentor) and she asked to pray with me. As she was praying, she was asking the Lord to give me a peace that surpasses all understanding and just a peace of mind. Needless to say, I definitely have that peace. I keep second guessing myself and wondering if I should be more nervous about having the disease, but honestly why should I worry when I have God fighting for me? Why should I worry when God is the great physician? Why should I worry when I am grounded in my faith and I know who the TRUE healer is? 

Like my mom was telling me, God is giving me grace in this situation because He knows that I need it. I have truly used this opportunity to grow and to try and be an influence in other peoples’ lives. Not to brag but, while being at the hospital, many doctors and nurses have commented on what a good attitude I have had during all of this. The only reason is because I know that God is on my side and He will take care of me and, because of that, I have no reason to worry. Being in the hospital has given me an opportunity to ask the nurses what their stories are and I’ve gotten to know so many new people. In the hospital, I put scripture up around the room so that I especially could be reminded daily of what His Word says, but also I didn't know whether the scripture would make an impact on a nurse or someone else who comes in and out of my room. 

One of the biggest things that I have learned from everything I've been going through is this…if I can trust the Lord while going through this, then He can use me to be a light for others and to help challenge others to trust the Lord in every circumstance. I’m thankful for how He is using CF in my life already.

Genes

Gene ~ a unit of heredity which is transferred from a parent to offspring and is held to determine some characteristic of the offspring.

Today was the day we have been waiting for...the day Hannah's genetic testing would come back. It's a day I thought would never get here and yet that I was dreading at the same time. It was the day that we would know definitively that Hannah does or does not, in fact, have Cystic Fibrosis.

It may seem strange to doubt that she did after all we've been told, but there was one Dr, the one over infectious diseases, who just was never convinced she had CF. It never made sense to him that it took so long for her to be diagnosed and that she did not present in a physical way as the majority of CF patients do. So, while 99.9% of the Drs told us she DID have CF, I clung to hope that maybe the infection disease Dr knew something they didn't. I mean, I've never been one to follow the crowd, so why start now. 

I stayed at the hotel last night, as I am again tonight, but I made sure I was up and at the hospital in time for the residents and her care team to make the rounds. Deenah and Dr. Wang came in around 8 as usual and, during their daily assessment, casually mentioned that the genetic testing had come back and it was positive. The infectious disease Dr and I may have held out hope, but genes don't lie.

Dr. Pillai and later Brad, the guy over respiratory therapy, explained about the genes Hannah had and what that really meant. They named her genes and showed us how to enter them both in a database and and find out the characteristics of her particular gene set as well as the number of people in the world who have her exact gene mutation of CF. And you know what? There's a reason it seemed odd to the infectious disease Dr (who I promise has a name, but it's a mouthful).

There are only 24 people in the world who share G551D and 1717-1G>A gene mutations. There are about 35,000 people in the US with CF and about 75,000 in the world...but there are only 24 people in the world who are fearfully and wonderfully made with the exact same gene mutations as our Hannah. Wow!!!

I'd like to say I embraced this news with a joyful heart, but I must admit I felt the weight of each of those mutations pressing down on my chest as I listened to their words. I KNOW God made Hannah and He makes no mistakes! I KNOW this has not caught Him the least bit by surprise! I KNOW these things. But. I. Don't. Want. My. Daughter. To. Have. CF.

So, I listened to their words with a brave face and then I went for a walk and cried. I cried because all those Drs were right. I cried because I don't want my baby to have to spend hours a day doing breathing treatments in a vest that beats her around. I cried because I'm tired and claustrophobic and want to go home. And then I dried my tears, ordered lunch and spent the rest of the day enjoying time with 2 people who mean the world to me.

I want to be clear about something as I wind up my thoughts for today. It has never crossed my mind to be mad at God. I don't blame Him for any of this! I admit to feeling a tad bit of Mom guilt this week, especially once my sweat test came back, because it was confirmed that I contributed to her having jacked up genes. You know what's crazy, though. She had to get a jacked up gene from Tim, too, and I would never blame him for that! 

So I now no longer blame God OR myself for Hannah having CF. She IS fearfully and wonderfully made...2 genetic gene mutations and all!!

Rollercoasters

I’m not a fan of rollercoasters. I never really liked the idea of them, but a close call years ago sealed the deal. We were visiting my grandparents and the fair was in town. I was so excited to go and see what they were all about because I had never been to one. While we were there, I was somehow convinced to ride the rollercoaster. It was your typical fair rollercoaster with a track that creaked and groaned as you slowly ascended, leaving you with a less than confident feeling that it could withstand a train of cars hurtling around it at high speeds. I made it to the end and and resolved in my mind that that would most likely be the last time I ever rode a rollercoaster.

That night we were home at my grandparent’s house and, as was the custom, we were watching the 10 o’clock news before bed. I always loved going to visit my grandparents because we got to stay up and I felt very grown up watching the late news. The familiar intro played and Dan Miller filled our screen with the top story of the night...the derailment of a rollercoaster at the county fair!!! The very rollercoaster that I had clung to as it creaked and groaned it’s way to the top. Needless to say, I was traumatized. The knowledge that shortly after I disembarked it had left the tracks, injuring numerous people, ensured the end of my rollercoaster riding days.

Since then I have avoided them at all costs. Really high highs and rushing lows just aren't my thing. I prefer to live simply, with my feet firmly planted on the ground! If you know me well, you know this applies to life in general for me. I don’t need mountaintop experiences and I try not to wallow in the valley. I’ve had tough things to deal with in my own life and as I’ve walked with others, but I’ve often thanked the Lord that I haven’t had anything really hard happen to me or those I hold closest to my heart.

That changed on April 3, 2019 when my baby girl, Hannah, was diagnosed with Cystic Fibrosis. I had seen the results of her sweat test and was pretty sure we would soon have a positive diagnosis, but all that was confirmed when the pulmonologist called me early that evening. In a grave voice he said she did have CF and he would like her admitted to the hospital that night because she was quite ill! I can’t remember all he said because I became less aware of his words and more aware of my own personal rollercoaster beginning to unlock and veer off the tracks. We thought we were going to have to stay in town a few extra days, and instead we were told she was being admitted for a 2 week stay at the Mayo Hospital.

The first couple of days were an overwhelming whirlwind of examinations, information and little to no sleep, but I felt at peace. This morning I woke up sad and mad and have had to struggle through the majority of the day. I take comfort in the knowledge that God is not offended by my struggle and that He is actually camped out in the middle of it with me. I know we are entering new territory with a huge learning curve and that there will be many hard days. I am confident, though, that God is still as sovereign as he was before we boarded that plane to head north and that He loves Hannah even more than Tim and I do.

We so appreciate all the calls, texts, meals, care, concern and especially the prayers. We are reminded, yet again, what an amazing community the Lord has allowed us to be a part of and we do not take it for granted! Tonight we take comfort in knowing we’re one day closer to coming home!