In 2015 medical experts declared that my very fragile, very sick baby had a genetic condition. “Distal 18Q Micro-Deletion” is what they called it. We were told that she was missing critical DNA. We were presented with a 27 page document of medical research on this condition. It painted a very grim picture. People missing this DNA are likely to never walk, never talk, have severe epilepsy, require a feeding tube, have life-threatening heart defects, be blind, be deaf, have a compromised immune system… and that was just the first page.
In 2016 God declared that my very perfect baby lacked nothing! Where doctors declared “deletion”, He declared “completion”! He had filled the holes in her DNA with HIM. She no longer had good chromosomes and bad chromosomes, she only had GOD chromosomes.
As we began to live in response to Gods declaration about our baby instead of in reaction to the medical research, our fragile baby began to grow and strengthen.
We watched in wonder as the hole in her heart spontaneously began to close. She passed her hearing test. A tumor in her eye disappeared over night and she passed a vision test. Myoclonic seizures disappeared and she was cleared of epilepsy. She learned to swallow and was no longer in danger of requiring a feeding tube. She began imitating the dogs, and eventually started making sounds. Those sounds turned to words, and those words turned in to paragraphs, stories, and songs! At 4 years old our formerly fragile baby took her first unassisted steps. She now spends her days running, jumping, and dancing.
“She silently stepped out of the race that she never wanted to be in, found her own lane and proceeded to win.”
I have been struggling for about a week to find the best way to share some big news. The heart of my struggle has been how to represent the severity of what the health care system has put us through without trashing the medical community. I don’t know how to do that. I am at such a loss right now. So, I have decided to leave THAT post for another day. I will simply mention that a system that profits from keeping my child sick is neither healthy nor caring. So, we have decided to untether ourselves from the broken system.
So, what’s the plan? What is the big news? I’m glad you asked! I will answer you with a riddle: What can 1 dog do that 29 medical degrees cannot do? A dog can keep Clara out of the hospital! Get it? Hmmmm. Let me put it this way…
For the last 2.5 years I have been exploring the possibility of getting a medical alert dog for Clara. I have visited facilities, interviewed trainers, attended zoom meetings, attended coaching, researched the benefits of For- Profit vs NFP, and learned the ins and outs of paying for a service dog. I knew that if a dog could alert us prior to one of Clara’s episodes it could save her life (and our bank account). I never moved forward with a contract because I always figured that Clara would need to have a diagnosis and/or know the cause of her crashes in order to train a medical alert dog for her. FALSE!
Did you hear that? It was the sound of us beating the system! Happy dance! No more invasive tests! No more 2.5 hour drives to Chapel Hill to see doctors that leave us with more questions than answers! No more racing to the hospital and hoping that we get there before Clara’s heart stops. A medical alert dog detects high and low blood sugar, ketones, acidosis, pre-seizure brain activity, heart arrythmia, and general changes to blood chemistry. It is then trained to both alert if there is a problem and from where the problem is coming. This is an absolute GAME CHANGER for us!
Seconds count when Clara has a crash. Getting ahead of the problem buys us valuable time to give Clara her life-saving meds within the window when they will be the most effective. Early detection means the difference between whether Clara spends a few hours in the ED, or she is admitted for days. It is the difference between Clara peacefully sleeping off her symptoms at home or having to be rushed to the hospital. A medical alert dog gives us the peace of mind that Clara has help when she is away from us. Someone else is “on duty” so we don’t have to be.
There is no price tag on peace of mind. It is invaluable to us. So, we have moved forward with a contact with Cedar Oaks Kennels in Illinois! Owner Zach Kellerman will be training a well-oiled-ketone-smelling-seizure-detecting-glucose-alerting-mobility-machine for us to have in 2023. Clara is so excited that she is getting a “big dog”. She hopes to name it “Bailey” after the dog from the movie “A Dog’s Purpose”. Fortunately, Bailey is a unisex name :). Zach won’t guarantee if the dog will be male or female. He is going to choose the best of the best of the litter first for Clara.
Clara’s dog will cost us $25K that we dont have. But, we have some things that are bigger than money. For starters, we have perspective. $25K is not such a big price to pay when compared to the $30k in medical bills Clara racked up since April. That is out of pocket! We JUST got out of collections. We also have hope. For the first time we have a plan for PREVENTING future medical bills by keeping Clara out of the hospital. Lastly, we have the biggest, most loving, supportive community. You have already raised for us the entire down-payment for the dog! That is amazing! And, a member of our community who owns a 501C3 has agreed to pick up Clara’s campaign so that tax deductions can be offered as incentive to donors!
We hope that you will stay tuned as we bid farewell to the health care system hamster wheel. I have so much gratitude for the gracious outpouring of love and support that we have experienced. If you would like more information about how to make a tax-deductable donation toward Clara’s service dog, send me and email (firstname.lastname@example.org). I will write specific instructions on this page at a later date. In the mean time, please check out Zach Kellerman in action at https://cedaroakkennels.com/
Heavier Than I Thought (10/9/2021)
Akron Children’s Hospital 2016- At long last a Geneticist confirmed my suspicion…and my fear. Clara was sick. She was really sick. For me, the hard part was that her condition was rare. Specifically, she was only the 427th person in the history of the world to register with her specific diagnosis. I’m a numbers gal. 427 people is not a big enough sample to have accurate data. But there was some data…data that predicted a very grim future for Clara.
Over the years I have taken Clara back to Akron Children’s Hospital for various tests and evaluations. With each visit we have found more questions than answers. I’m a numbers gal…and numbers don’t lie. Run a test! Make a referral! Make an educated guess! Make a plan! For God’s sake, just get me some numbers!
I confess, I’m usually so far in my head when we are there that I have never stopped to look around. But this time something caught my eye. No doubt this “thing” had been there in the lobby all along. Yet, I never saw it. I had to investigate! It was a statue of a giant bird on a tiny house. Although adorable, the weight of the bird was crushing the house. Curious, I read the plaque in front of the statue.
“Heavier Than I Thought”
Wow. Just wow. Yes, it is heavier than I thought. I don’t know if my interpretation is what the artist intended, but my interpretation is profound (to me). It resonated deeply. I was the house being crushed under the weight of an adorable bird. The house is a cheerful yellow color. It doesn’t seem to resent the bird. After all, the bird is adorable! But the unexpected weight of embracing something so enormous as chronic sickness is enough to crush any roof.
I took Clara’s picture in front of the sculpture. I couldn’t help but start to cry. For so long I’ve been focused on the beauty of the bird that I never stopped to look at my sagging roof. I began to ask myself why my bird felt so heavy. That was a tough question to ask. I wasn’t prepared for the answers to all hit me at once.
- I love numbers, but these numbers are heavy. $138K in medical bills, 24 Specialists in 4 different states, 48 hospitalizations, innumerable invasive tests, 6.5 years, and still no answers. The numbers are crushing my roof.
- When there are no answers, there is no plan. Me saving Clara’s life is the plan. The weight of being Clara’s only life-line sits squarely on my shoulders, and it’s crushing my roof.
- When there are no answers, there is also no prognosis. My heart deals with the constant reality that I may lose my daughter any day. I’ve said goodbye to her many times. The insecurity of uncertainty is crushing my roof.
- Since I am Clara’s only life-line, she needs a medical ID bracelet to direct First Responders in case I am not present. But I don’t know what to put on the bracelet. Diagnoses go on a medical ID bracelet. Diagnosis are answers to problems. Clara doesn’t have answers, just problems. I guess I must never be unavailable if Clara has an emergency. And, that pressure is crushing my roof.
- A Medical Alert Service Dog could take the night shift for me. I haven’t slept in 6.5 years because I am the plan, even late at night. I have spent two years researching the best service animal solution for Clara. Alas, a medical alert dog will be extremely expensive and difficult to train since we are lacking answers as to why Clara gets so sick. A dog can detect arrhythmia, seizures, cancer, low blood sugar, high blood sugar, and ketosis. Without knowing the cause of Clara’s sickness, the dog must be trained to detect ALL abnormalities. My roof being crushed because such a highly specialized service dog would cost us $30,000 and take 1 1/2 years to train.
- Statistically, 80% of couples who lose a child end up getting divorced. We lost one child to miscarriage. What if we lose Clara too? My roof is being crushed under the weight of those odds.
- Lastly, good intentioned people have unintentionally sat on my roof next to my bird. They have added to the crushing weight by reminding me that its God’s job to save Clara, not mine. How I wish I could trust God with Clara. I often feel like a failure for not being able to get to that place of trust. But my ability to trust God with my kids disappeared 3 years ago when I had a miscarriage. Trust has been just out of reach since that moment. Others add to the weight on my roof by carelessly throwing out cheap anecdotes or weaponizing the gospel by quoting verses at me instead of climbing in the trench with me. My roof is being crushed by careless words.
But then there are those of you who recognized my sagging roof even before I did. You ran to me and began shouldering some of the weight of my giant bird. Since my roof became structurally unsound, many people have shown up. People have shown up with dinner. Shown up to take my kids to school. Shown up with a check or a bouquet of sunflowers. Shown up to bring me coffee and a hug while Clara is in the hospital. And you have not stopped showing up.
The most memorable moment of roof reinforcement in the last 6 months was when a pastor friend of mine prayed over me. His prayer was simply “God, what are you doing? Have mercy on this family!!!!!!!”. In that moment I felt validated. Someone else noticed the injustice we have been experiencing for the last 6 years and was outraged on our behalf. I think that prayer alone added another weight baring wall under my sagging roof!
I don’t have a clever, witty, well written conclusion to this update. I don’t resent my beautiful bird. She amazes me every day! But my roof sags. I may be “under construction” to fix my roof for quite a while.
Annual Genetic Evaluation Update 10/1/2021
Thank you all for each prayer and encouraging word going in to Clara’s appointment yesterday. I don’t have a great way to describe how the appointment went.
We didn’t learn anything new about Clara’s prognosis. That could be considered good news or bad news. I’m an information kind of gal…give me the names, projections, statistics, and numbers and I will pray Clara through them. I will do the research if you point me in a direction. Alas, no direction was given.
I came prepared with great questions. I was validated that my questions were great, but that there were no answers. Hmmmmm. 🤷🏼♀️
I went to the appointment needing to find reassurance that we were on the right track pursuing a mitochondrial disorder as a probable cause for Clara’s frequent hospitalizations. Alas, no reassurance was given. I was told that ruling out mitochondrial disorders is a logical next step. 🤷🏼♀️
Lastly, I was given a lot of information about the genetic test that Clara, Travis and I had on Monday. I had no idea the ethical and/or moral ramifications of the Exome Sequencing test. This test looks at all 20,000 genes and documents any and all “abnormalities”. As a result, Clara, Travis and I will all know if we have a gene for things like breast cancer, brain cancer, basically all of the cancers, diabetes, Alzheimer’s disease, etc.
So the choice becomes whether or not we want to be told this information. Is it better to live a short life in ignorant bliss…or a long life in fear of a disease gene that may express? Again, I’m an information girl. I want to know.
My heart continues to wrestle with God through the tough questions. I feel that it is important to be transparent, honest, and pretty public about this wrestle. My observation is that Christians receive the message that questioning God is dangerous, irreverent, and shows lack of faith. I disagree. I believe it shows a courageous pursuit of genuine relationship with God.
Elie Wiesel (Holocaust survivor) said that hate is not the opposite of love. The opposite of love is actually indifference. I agree. Therefore I conclude that when relationship sidesteps tough questions, it looks more like indifference.
I recently lamented to a mentor that there is no manual to help Christians navigate brutal honesty with God. It isn’t often modeled. “So write the manual for others who come behind you”, he said. He reminded me that God made me a pioneer. Maybe God has me pioneering new territory for others who want to ask God tough questions. Pioneering doesn’t always look like a grand adventure. Sometimes it looks like willingness to be the first to be first.
Thank you all for following me on this journey. Below is a picture of Clara enjoying her post-appointment celebratory cake pop 🙂
Do Things Fun 9/30/2021
Today is the day I take Clara for her annual genetic evaluation…
I’m learning to live in a place of positive expectations. I have struggled￼ a bit with disappointment over the last few years. I am wired for adventure, fun, and conquest. Yet, I have been fighting so hard for Clara for so long. Having the role of “life saver“ doesn’t allow much space for fun.
I ￼don’t resent Clara at all! What would we not be willing to do for our children?! Yet my heart hears adventure beckoning and has become accustomed to politely declining the invitation. Plus, responsibly paying the medical bills does not allow much room for a life of grand adventure. ￼
I’ve learned to live with the disappointment.￼￼￼￼ But I didn’t realize that a small perspective shift would help me greatly during the season of life saving. I am learning to change the cry of my heart from “I must do fun things” to “I must do things fun”. I guess fun is really more of a personal perspective. Fortunately, our perspectives can be fluid if we let them.
This week I have been putting this perspective change into practice. I don’t find it fun or adventurous to take Clara to another state to see her Geneticist. The potential is always there that we might find out bad news. We could walk out of the hospital with more disappointment and setbacks. But, I’m choosing to do things fun. Our choice is not in what we have to face but rather in how we face what we have to do.
Today I choose to do Clara‘s genetics appointment fun. We’re wearing matching outfits. We’re not taking electronics, but rather coloring books and play doh. I have a bag packed full of chocolate and homemade bakery treats from my mom. Today I will have fun doing hard things.
Did you know that Clara has a Go Fund Me page to help with her medical bills? Check it out here:
This Warrior Is A Child 9/5/2021
Clara has been through a lot in her 6 years of life. She is medically fragile, and some years it seems as though she spends more time in the hospital than home. She is way braver than me. And, she has a way better attitude than me. So this letter is to Clara. She is not just my daughter. She is also my hero.
My Beautiful Clara, I am writing this to you while I sit next to you in the hospital. You are sleeping, and I am standing guard. Child Life just came in to bring you a tea set, but you were too tired to play. I went to the vending machine and got your favorite cookies. Sadly, you were in too much pain to eat. So I’m watching you sleep, thinking my deep thoughts and wishing I could somehow take this all away from you.
You have faced every life-threatening emergency with such courage…and good manners. Many times I have been standing my ground as a Mama Bear against doctors who don’t listen or maybe just don’t care. Meanwhile, I often hear you with a soft, trembling, weak voice thanking the nurses for giving you an IV. You barely have the strength to speak, yet you use your strength to show gratitude. I’m the one who should learn from YOUR example.
Together, we have endured many many trips to the hospital. We have fought together, as a team. We have endured you getting several hundred IVs. You are always scared of the pain, yet you willingly give your hand to the nurse. We have the same dialogue every time…
“Mom! Help me!”
“Look me in my eyes and borrow my courage. I have extra courage, and I will share it with you right now. Just look at mommy.”
“But it’s going to hurt!”
“It might. But there is nothing we can’t get through together. I’m here and I won’t leave you.”
“But I’m scared!”
“Scared is good. It means that you are still alive! And courage doesn’t mean that you don’t feel scared of the IV. Courage means you give your hand to the nurse even though you are scared .”
“But it’s not safe!”
“Then let me scoop you up and hold you close. Pretend I am a blanket. Wrap yourself up tightly in your Mommy blanket until you feel safe.”
Sitting here in the quiet watching you fight for your life has brought things full circle for me. I have the deafening sound of silence blaring in my ears. It’s uncomfortable. It’s painful. I feel scared. I feel alone. It doesn’t feel safe. I’m worried. And for once I believe I would prefer your IV alarm and vital stats monitor to be going off loudly and simultaneously. The noise is more comfortable than the silence sometimes.
You know that extra courage I gave you when you needed it? I may need some of it back. Can I look in your eyes and have some of your courage? I’m scared. Can I crawl in the hospital bed with you and pull the blanket over both of our heads? Can we hide there from your diagnosis together for a minute? There is nothing we can’t get through together. But if you don’t get better, I won’t have you to walk me through the broken heart. Losing you would hurt. A lot. And the pain would be a reminder that I’m alive…but you are not.
When I first met you in the NICU I promised you something. You were hooked up to so many machines. I was scared. Through tear-filled eyes I promised you that I would fight for you. I would never stop fighting for you. But, you needed to fight. “Come on, little one. FIGHT!”
I have made true on my promise. I will never stop fighting for you. But I will also never stop being in awe of your kindness and good manners toward others even though you are fighting for your life. I will also never stop fighting back the tears when you are finally sleeping. For in the quiet I remember two things… how far you have come, and how far I have to go.
“Lately I’ve been winning battles left and right
But even winners can get wounded in the fight
People say that I’m amazing
I’m strong beyond my years
But they don’t see inside of me
I’m hiding all the tears
They don’t know that I come running home when I fall down
They don’t know who picks me up when no one is around
I drop my sword and cry for just a while
‘Cause deep inside this armor
The warrior is a child
Unafraid because his armor is the best
But even soldiers need a quiet place to rest
People say that I’m amazing
I never face retreat
But they don’t see the enemies
That lay me at his feet
They don’t know that I come running home when I fall down
They don’t know who picks me up when no one is around
I drop my sword and cry for just a while
‘Cause deep inside this armor
The warrior is a child”
Say I Won’t
The Not-So-Little Things 7/26/2021
My prayers for Clara have evolved over the last 6 years. They started with “don’t let her die before I have the chance to willingly give her to you” and “please make that doctor believe me”.
From there they looked like “please don’t let her aspirate that sip of water”, “please don’t let that eye tumor be cancer”, “please help the IV to go in the first time”, and “please don’t let her stop breathing during surgery AGAIN”. Mostly I prayed that if Clara must die, that she wouldn’t ever suffer.
My newest prayers are “please don’t let that anomaly on her MRI be a degenerative brain condition”, “ please don’t let that other spot on her MRI be a tumor”, and “please don’t let her ever have to leave kindergarten in an ambulance”.
Heavy. Those are heavy prayers. Sometimes I get tunnel vision because of the gravity of the prayers I must pray for my daughter. But sometimes there are beautiful, unexpected, lighthearted moments that catch me completely by surprise.
It never occurred to me to pray that Clara could do the “regular” things that “traditional” kids get to do all the time. I was too busy fighting for her life. Yet there Clara was, kite in the air. She was standing without assistance. The wind did not make her lose her balance. Her fingers had enough grip strength to hold tiny string. And her once trembling eyes were now fixed with resolve on the tiny kite that she had managed to launch off of a massive pier on Lake Erie. She did it!
Today my prayer is “don’t let me miss the glory”.
Sharing Claras Testimony 6/27/2021
Clara and I have been traveling this summer sharing her story. This video was take on 6/27/2021 in Lakeside Ohio.
7/17/2021 Fight Dance
The Joy of Chocolate Pudding (April 6,2021)
The last 5 years have taught me a lot. Clara has been suddenly rushed to the hospital in those 5 years more times than I can count. Once at the hospital, a super intense game of Survivor ensues. With no sleep or food and only adrenaline to sustain my brain, I have to form alliances, build trust, and ultimately vote medical professionals off of Claras island.
Knowledge is power. I learned the hard way that doctors don’t know everything. I have become an expert in genetics, cardiology, pulmonology, neurology, urology, the digestive system, bone disorders, anatomy, physiology, pharmacology, the ear/nose/throat, endocrinology, swallowing mechanics, speech, muscle development, reflexes, fine motor skills, ophthalmology, and much more. I’ve learned how to read X-rays and interpret MRIs. I’m a walking medical encyclopedia now.
That knowledge has helped me to advocate for Clara, but I don’t place high value on any of it anymore. In fact, I have recently learned that it was something else entirely that sustained both me and Clara through all of the Survivor charades. What sustained us was a weapon. The weapon wasn’t very powerful at first. But let me tell you, over the last 5 years it has developed into a weapon of mass destruction!
Ever wonder what value God places on joy? I did. Joy isn’t faith, hope, or love, so I concluded that it wasn’t of much value to God. If joy was merely a feeling, then it must be of more flesh than spirit. Yet, like Pollyanna I must just have an extra portion of it in the ingredients that make my dough. It is inescapably bound to me like gum in hair. No matter how much peanut butter you use, you aren’t getting rid of the gum once it is in your hair. Okay. Perhaps the metaphor was lost on those of you who don’t have lots of daughters.
The point remains…no matter how hard life got during Claras frequent hospitalizations, joy wouldn’t be shaken. It never left. In fact, it began to grow. Slowly the dark, cramped hospital rooms seemed more like an adventure than a punishment.
The doctors began looking more like humans in need of a refreshing smile than egotistical tyrants. I traded stress for laughter and praise during times when Clara would scream for hours and kick the nurses in their faces. It wasn’t that I thought that the nurses deserved to be injured. It was because I remembered all of the years I prayed that Clara would have the strength to fight, a voice to scream, and the confidence to stand up for herself. I was witnessing answered prayer, and for that I had such joy!
I have observed something very curious about joy. It is dynamic. It doesn’t stay still. Joy grows. More specifically, joy is contagious. When joy is present it can’t help but spread to others. For example, have you ever walked in to a room where someone is laughing? Typically we don’t have to know why they are laughing. We naturally just begin laughing with (or at) them. Conversely, when we walk in a room where someone is fearful, it typically formalizes the atmosphere very quickly.
I believe that joy is both dynamic AND it is the antithesis of fear. When all hell comes at us with a siege of fear, I believe joy is the most powerful weapon. I think it confuses the devil. I can picture him scratching his head and asking his head demon “Why are they laughing? What did I miss? I didn’t hear the punch line. They are supposed to be afraid. What went wrong?”
We are either growing in joy or we are growing in fear. We are either spreading joy or we are spreading fear. My joy is now so strong it is weaponized. My weapon was forged in the valley of the shadow of death. It is military grade.
This last week when Clara was hospitalized I switched up my usual game of Survivor. Instead of reaching for my flimsy shield of medical knowledge for defense, I opted for a preemptive offensive assault with my joy RPG. No, really.
Picture this: One morning I could hear the doctors and residents outside our door getting ready to do rounds. Instead of reaching for my phone and logging on to MyChart so I would be ready to fight, I opted instead to reach for the chocolate pudding. No, I wasn’t hungry. I smeared it all over my face. Clara thought it was hilarious and proceeded to do the same. The doctors knocked on the door, and began to turn the door knob.
“Patient Clara Grace Thompson. (Clara giggles) Birth date 5/31/15. Presented with cyclic vomiting. (more giggles) Symptoms consistent with history of metabolic crashes caused by ketotic hypoglycemia. (residents begin giggling) Last glucose reading at 6:00 was 216. (med students begin giggling) D10 replaced with D5 at 6:15. (Attending begins giggling) Awaiting complex metabolic panel results to determine if ketones cleared in urine.” (I giggle)
The resident reading Clara’s chart slowly and suspiciously looked up only to suddenly realize what all of the giggling was about. I looked at all of them with a completely straight face and said “You didn’t get the memo that it is National Paint Your Face with Pudding Day?” I kid you not, the Attending reached down, grabbed a glob of chocolate pudding, and smeared it all over his face.
No one in the room was immune to the joy released in that moment! In the midst of fear and uncertainty, there we all were…cracking up. The joy broke the fear. The environment shifted from one of sterile formality to one of lighthearted kinship.
I conclude that joy must be of great worth to The Father. It is powerful. It is a weapon. It confuses the devil. It shifts atmospheres. It is much more pleasant to feel than fear. And it was important enough to be prioritized second under love as a fruit of The Spirit.
I pray that my joy would grow and spread to you. Then your joy would grow and spread to others. Lastly, that our joy may be complete (John 16:24). Go paint your face with something ridiculous and get a good laugh out of somebody. You won’t regret it!
1 Second More Stubborn (March 24, 2021)
My sister is a great mom. I once heard her tell me that her parenting strategy was to be one second more stubborn than her children. I laughed at her because I thought that she was kidding. Then I had kids of my own. Her words are now as profound as they are funny!
But this phrase took on a whole new meaning when I had Clara. I found my internal dialogue defaulting to my sisters words of wisdom whenever I had to put on my big girl panties to fight for Clara’s life.
It began with…
“You don’t have to be smarter than her doctors, just 1 second more stubborn in your resolve.”
That turned in to…
“You don’t have to be strong for Clara all day, you just have to be 1 second more stubborn than your desire to fall apart”.
Days turned in to weeks. As Clara grew, I used my sisters words as a pep talk for Clara when she was scared and discouraged.
“Clara, you don’t have to be well enough to leave the NICU. You just have to be 1 second more stubborn than death.”
“Clara, you don’t have to be able to walk or talk, you just have to be 1 second more stubborn than your diagnosis.”
“Clara, you don’t have to be brave while getting this IV. You just have to be 1 second more stubborn than your fear.”
“Clara, you don’t have to be capable of writing your name correctly, you just have to be 1 second more stubborn than your frustration.”
This week I once again had a deeper revelation of my sister’s phrase. It touched me to my core. Faced with the discouragement and fear of another hospital admission, I vulnerably turned to YOU. You are my community. Team Thompson’s Community. It is hard to be transparent in a battle. But It’s as if part of me was saying…
“I’m not sure that I am more stubborn than my problem this time. I already used my last second.”
But you were stubborn for me (yes, that is a compliment).
You were 1 second more stubborn than the temptation to look the other way.
Then, you took that second and invested it in us.
You allowed compassion to move you to action. You spent 1 extra second praying for us, reaching out to us, sending us a card, sending us a message, checking in on us.
In full disclosure, I most likely would look at our family and think “Here they go again. Same story, second verse.” We have been facing sudden frequent hospitalizations for almost 6 years. I would TOTALLY not be offended if our community was just “over” Team Thompson medical drama by this point.
But you were 1 second more stubborn than your disdain for medical drama.
When you invest your second in prayer for us, God moves heaven and earth for Clara. Literally every time you stand with us, Clara makes a dramatic and sudden Improvement. It’s like she remembers that she has an extra second in her somewhere. She once again becomes more stubborn than her diagnosis, pain, sickness, and fear. She picks up her armor and fights!
After 6 years of witnessing your faith in action I am certain of something. I’m certain that it is our selfless community standing in faith, pushing back darkness, and declaring life on our behalf that has made all the difference.
I am 1 second stronger, braver, and more stubborn than discouragement because you were 1 second more stubborn than indifference.
The Rest of the Story (July 18,2020)
With all of the sincerity in my heart I want to thank Clara’s village. You have been a lifeboat to me in a season of rising water. Your prayers, consistent calls and messages, words of encouragement, and acts of service have brought our family strength and refreshing as we have declared war on the things that declared war on Clara’s body.
Exodus 17:11-12 says: “As long as Moses held up his hands, the Israelites were winning, but whenever he lowered his hands, the Amalekites were winning. When Moses’ hands grew tired, they took a stone and put it under him and he sat on it. Aaron and Hur held his hands up-one on one side, one on the other-so that his hands remained steady till sunset.”
Your love has been the rock for me to rest on. As you have invested in Clara and in me you have been holding up my battle-weary hands. I close my eyes and can see that the war already won. The enemy has tried to steal, kill, and destroy all that our family stands for. But satan is a defeated foe, and I will no longer default to shadow boxing with him. He cannot have the plans that God predestined for Clara before the foundation of the world! Clara is the victor and all of the spoils of war are being returned to her.
Until you came along side of me, I was struggling to remember that the war is already won. Joshua 23:10 tells us that each one of you will put to flight a thousand of the enemy. If one of you puts 1,000 to flight, think of the damage you are doing to the enemy when you stand together for Clara!
I desire to express my gratitude to each individual personally. You have all ministered to us intentionally on a personal level. I never thought I’d live to say this, but the sheer number of people pouring in to us now will prevent me from being able to be personal. What a great problem to have! Still, I have read, heard, and received every word of encouragement and have been honored by every act of love.
I want to honor all of you by sharing a bit more of her story. It is only in light of “the rest of the story” that you can fully grasp the magnitude of the power you released when you chose to align with Clara.
It was January 3, 2016 and Clara had just spent her first Christmas in the hospital. The day after she was discharged we drove to my home in Ohio. My grandma had just had a stroke and was in her final hours. As I prepared my heart to say goodbye, I prayed that Clara would stay stable for the journey.
We made it to my Grandmas bedside in enough time to say what needed to be said. I laid my tiny fragile baby in the bed with my Grandma and watched them sleep peacefully in each others arms. Together they rested… both with holes in their hearts…one fresh from heaven and one only hours from returning there. For a brief moment their lives intersected. I was holding both my baby and my Grandmas hand when she passed.
I had to table my fear of Clara’s future and table my grief momentarily as I prepared to fly back to NC. I had to do the last minute preparations for my Grandmothers funeral, and I had left NC so hastily that I needed to return briefly.
I was sitting on the bedroom floor in a pile of dirty laundry when the Pediatrician called with the results of Clara’s genetic test. The test revealed that she had a deletion on her 18th chromosome, and was therefore missing vital DNA in her cells. The Pediatrician asked me if I had any questions. I only had one: Was Clara safe to travel home for my Grandmas funeral?
I initially felt relieved that I wasn’t crazy. Hank (Holy Spirit) had been prompting me all along, but we couldn’t find a doctor who also listened to Hank. In fact, one doctor suggested that I should have a psych evaluation to rule out Munchhausen Syndrome. He had missed the signs of Clara’s fragility and concluded that I was the one to blame. I had been fighting a losing battle for 6 months. However, I had to postpone processing this information fully because my emotional energy needed to be spent on writing and delivering my Grandmas eulogy.
I delivered the eulogy and buried my Grandma. Upon returning home I was bombarded with the reality that I would now have to make critical medical decisions for Clara. My grief and shell shock had temporarily robbed me of the tools necessary to breach the walls of uncertainty. Again I sat on the bedroom floor with only the dirty laundry as company. But this time I had many questions…
Would my world ever begin spinning again? What if I lost both my Grandmother and my baby? Could my heart contain the grief? Was I be enough for Clara? Would I have the wisdom and strength to fight for her when she couldn’t fight for herself? The questions fluttered around my head like butterflies caught in a hurricane.
When the question storm subsided I was left with “the one main question”. The words of the disciples from John 9:2 echoed through the hollow corridors of my heart until the sound was deafening. “What did I do wrong that my daughter should be born with such a load to carry?” The question bubbled up in screams that sounded more like angry exclamations than an actual question. The screams resonated so loudly with the demand to be answered. But I didn’t have the answer. I tried to muffle the sound with coping mechanisms, pure adrenaline, and by defaulting to autopilot.
It wasn’t until after Clara’s body started experiencing creative miracles and spontaneous healing that I had the courage to once again address my “one main question”. This time it was Jesus’s words from John 9:2 that echoed through my heart… “This happened so the power of God might be displayed/made manifest in his (her) life”. God intended to use Clara as an Ambassador of hope and a beacon of His power!
By that time I had already started seeing the power of God manifest through Clara’s story. Others were encountering God because of my tiny Hope Ambassador. People that we prayed for in the hospital were getting healed. The Chaplain caught wind of what was breaking out on our hospital floor and she came to investigate. When she reached our hospital room she stopped at the door. She exclaimed “this room is holy ground”, then took her shoes off before entering. I was asked to share her story at the School of Power and Love. 2,400 people attended and another 200,000 watched the live stream. I was also asked to share Clara’s story at a benefactor luncheon at the Children’s Hospital. I watched as wealthy investors crumbled in to tears as they experienced the power of hope. Clara is the actual poster child for a treatment she received because she responded so well. Her testimony has been shared on the news. This week a pastor in Idaho sent me a video clip of him sharing Clara’s story with his congregation. It is as if my tiny Ambassador is dropping hope bombs around the world!
Why do I go in to this much detail on a post intended to thank our village? Because what I am most thankful to you for is that you have been willing to make Clara known. As you have shared her story you have extended her reach. And where Clara reaches, God touches. You have (perhaps unknowingly) changed others lives because you have engaged Clara’s very purpose. You have facilitated encounters with God as you have shared about Clara’s encounters with God. You are helping to change lives as you share about how God has changed Clara’s life. She is building Gods Kingdom through you, and you are helping to build her legacy.
Thank you for being a vehicle through which Clara leaves her mark on this world.
This is How I Fight My Battles (July 6, 2020)
“How we deal with disappointment of today will determine the fruitfulness of what we walk in tomorrow.” Chris Gore, Pastor of Healing at Bethel Church
What a journey we have been on with Clara in her 5 short years of life. Our journey started with her being whisked away from me seconds after she was delivered. I didn’t get to meet the baby I had just birthed. Worse yet, the report from the NICU was not good. I felt helpless as I laid in my hospital bed. I begged God not to take Clara before I had the chance to willingly give her to Him. I wanted the opportunity to lay her on the altar as an act of worship and surrender. If she died before I even met her I would be robbed of giving God my first moment with her.
But I did get to meet her. I sang over her in the NICU. I prayed over her. I spoke words of life over her. When I finally got to hold her I lifted her up to heaven. “She is yours. Thank you for letting me borrow her. Give me the grace to never take her back out of your hands.”
Clara spent much of her first year of life in the hospital. In my fear, desperation, and exhaustion, I took her back out of Gods hands and off of that alter. Clearly God was unqualified to deal with the magnitude of Clara’s situation. Or maybe He didn’t care. Either way, Clara and I were going to have to fight this one on our own.
Many times I thought I would be saying goodbye to Clara. Many times I looked at her tiny body hooked up to so many machines and tearfully promised her that I would never stop fighting for her as long as she never stopped fighting. Where was God when my tiny baby was too sick to cry as nurses tried for 9th it 10th time to get an IV started? I looked in her tiny brown eyes each time she was being poked and told her “Look in mommy’s eyes and borrow my courage. I have enough courage for both of us”. But secretly I wasn’t courageous. I was actually imploding from the sadness and fear.
Clara spent her first Christmas in the hospital. It was there on Christmas Eve on the cold hospital floor that everything changed. God himself sat on the hard floor with me and wrapped us both in a blanket. He wrapped me in with His love, and wrapped Himself in with my sadness. “There is no lack in my Kingdom. Her sickness isn’t from me. She is complete”, He declared. He told me that He would fill the holes in her DNA with Him. She would therefore be stronger than others with naturally complete DNA because her DNA was completed with Him, by Him, and for Him.
This declaration started a season of endless miracles! We were told Clara would need a feeding tube. Yet, God gently reminded us that Clara is complete. Clara has never required a feeding tube. We were told that she would never walk. That is only partially true. She CAN walk, but chooses to dance and run instead! We were told that Clara might not ever talk. Yes. She doesn’t talk in sentences. She speaks in paragraphs! She is also the first one to use her voice to pray for others. She was diagnosed with seizures in infancy and we were told she had a 50% chance of dying from one. She hasn’t had a seizure in 5.5 years (no meds!). A tumor (believed to be cancerous) in her eye disappeared over night. Miraculous improvements to her health were made almost daily.
For those 4.5 years we dwelled in a place of security and confidence. Our circumstances were good, therefore God was good. Clara was back in the hands of God and back on the alter of surrender. God was fighting for Clara, so Clara and I didn’t have to fight. Life was good…until it wasn’t…
This year alone Clara has been to the ED 9 times. 5 of those visits have been in the last 6 weeks. 3 of those visits were last week alone. Again and again doctors stabilized her but couldn’t figure out the cause of her fragility. 2 specialists at UNC Chapel Hill told me that nothing was wrong. I fired them both. 1 specialist at UNC Chapel Hill said “clearly something is wrong, but I have never seen this before. I don’t know where to begin.” Clara’s Geneticist couldn’t pinpoint the source of the crashes Clara was experiencing. We consulted with a Specialist in CA who referred us to Duke. While waiting to get in to Duke Clara crashed 3 more times.
In the last 2 months the enemy has robbed us of resources such as time, money, fellowship, sleep, and time together as a family. He has delayed our plans and our dreams. He has attempted to keep us in a place of chaos and confusion when God is calling us to a place of clarity and conquest. We have been robbed of resources, but those can be returned to us. What hasn’t been stolen from us is our identity, our security, our joy, our authority, or our peace.
Do I get angry? Yes! Do I have questions? Yes. Am I exhausted? Yes. Do I wonder why Clara’s body stopped living in response to Gods declaration of completion? Most definitely. Do I wonder why many that we pray for are healed and yet Clara seems to be declining? Oh yes. Do I want to take Clara back off of the alter? Sometimes.
This is where God is stretching me and challenging me. He is calling me to live in response to Him and not in reaction to Clara’s health. Exhaustion makes this challenging, but not impossible. He is further rooting me in the principle that my circumstances do not determine the goodness of God. It is actually the goodness of God that determines the truth about my circumstances.
Mostly, He has taken me to a higher vantage point to see the battle from His perspective. From up here I can clearly see that the enemy is attempting to distract, confuse, and delay us. He wants to drag us to his level and engage us in warfare from down on his territory. But we can’t fight fire with fire. We won’t win. We are called to wage warfare from a higher place. Our weapons aren’t human. They are supernatural and mighty (2 Cor 10:4)!
So how do we wage war from a higher place? Through our identity, authority, and our voice! Each morning I walk in my garden and make declarations through song. “My peace will return. My joy will return. I won’t lay down my keys of authority. I use them to unlock impossible doors. Doors of health and unusual resources. I close and lock the doors of sickness and delay. Clarity is coming! Completion will manifest! I will have recommence for what has been stolen. Obstacles are becoming level ground. Clara is secure, safe, and resting as long as she is on the alter.”
I share this not as someone who has “arrived” and also not as someone who is being disingenuous. This is my actual stand and this is my actual journey. It is currently being played out. I have declared war on the things that have declared war on Clara and my family. I won’t take her back off of the alter and I won’t lay down in the battlefield. I see the victory. Clara is more than a conqueror. And, I am confident that I will see the goodness of God in the land of the living. (Psalm 27:13)
This video is from our family worship time last night. She (and Gabby) love to dance before the Lord. At one point Clara fell down out of exhaustion. Her hands and feet are bruised from her IVs. Her muscles are weak from dehydration and electrolyte inbalance. She expressed frustration because she didn’t want to disappoint God by not finishing out the song for Him. My heart broke for her. So, a scooped her up, put her on my shoulders, and I used my strength to help her finish her dance. Her shouts of joy and the pureness of her laughter will be something I will remember forever.
Beads of Courage (July 12, 2019)
Take a good look at this picture of Clara. Notice the colorful garland adorning her IV pole. Don’t glance over it too quickly. Zoom in. It is not a decoration. It is several lengths of rope tied together. Each rope contains hundreds of beads. Each bead represents something…something traumatic…something painful…something scary…and ultimately something that required courage.
This beaded garland is a program that the Child Life Department at the children’s hospital calls “Beads of Courage”. Clara is registered with their “chronic” program, which means she has a non-cancer related reason that she spends a lot of time in the hospital.
Clara has a bead for every hospital admission, every MRI, every surgery, every anesthesia, every IV, every time blood had to be drawn, every specialist she has to see, every catheter she has inserted, every glucose prick, every CT Scan, every ultrasound, EEG, EKG, Echocardiogram, sleep study, eye exam, hearing test, Bronchoscope, endoscopy, colonoscopy, swallow study, X-ray, hour of therapy, or every trip out of town to see her geneticist in Ohio. Some of these things Clara has had so many times that she gets a special “100” bead.
Over the last 4 years I collected these beads for Clara. It was never my intention to actually string them or put them on display. I never wanted Clara to look at her beads and confuse WHO she is with WHAT she has been through. She is not a product of her diagnosis. She is more than a conqueror. Overwhelming victory is hers. She is the Daughter if The King. The same God who spoke universes into existence spoke completion over my Clara.
Last week Clara had Neurosurgery. When Child Life came in to her hospital room to update her beads, they asked me if we needed additional rope for the new ones. Hmmmm. Good question. I decided that it was time to string her beads.
I sat at the end of Clara’s hospital bed and waited until she got her afternoon dose of morphine. She typically got sleepy after she was comfortable from the meds, so I knew I would have time to work. I watched Clara drift off to sleep, then I got to work.
I picked up each bead and took a minute to look up what each one represented. So much pain. So much fear. So much courage. And, so many victories. I felt each one between my fingers. Cold. Roundish. Smooth. Then I put each on the rope.
There were so many! Every time I thought I was making progress I would look down and see hundreds more. Clara was surely going to wake up before I was done. And she did. I put the bead project down and once again became mom, advocate, pain manager, medical coordinator, and shoulder to cry on.
That night I picked up my big project again. I held back the tears as I strung bead after bead after bead. If pain was tangible, then I was holding it.
I was reminded of every time I held Clara while an anesthesiologist put her to sleep. I was reminded of every time I had to hold her hands or feet still while a nurse poked her again again trying to start an IV in veins that were shutting down. I remembered each time I cried out to God for mercy as Clara cried out to me saying “Help me Mama! Help me Mama!” The hands now holding the beads have also held Clara’s face. “Look at mommy Clara! Don’t look at the doctor. Look at mommy’s eyes and know that you are safe. If you can’t find courage, borrow mine. I have enough for both of us.”
Bead after bead after bead.
Yet God met me in my sadness and reminded me of something. I was not the first person holding courage in my hand. I was not the first one to feel something cold, smooth, and round in my hand.
David. I saw him down in a riverbed carefully selecting smooth stones for his slingshot. With those stones David took down a giant and freed a nation. Those stones represented courage and victory. Then God reminded me of the exact wording of my nightly prayer for my kids…that they would be giant killers, world changers, and history makers.” Wow.
As I looked back at the beads in my hands I remembered something else. My same hands held many parents hands as I prayed for them while Clara was in the hospital. I held multiple Chaplains hands as I prayed for them and encouraged them. I touched many children’s boo boos as I prayed for healing for them in the hospital. I prayed for the doctors. I prayed for the nurses. I prayed for the admissions personnel. I prayed for the staff at the Ronald McDonald House.
Each time we had an admission, a procedure, surgery, or even a check up we courageously took authority over death, loss, and destruction. We took back ground for God’s Kingdom everywhere we went. We have seen the sick healed. We have seen hope restored. We have seen people saved.
I suddenly felt inspired. I wonder if that is how David felt as he cut off Goliaths head…
My thoughts were interrupted as the doctors came in to do their rounds. I had been so lost in thought that I didn’t realize I had finally finished stringing Clara’s beads. I held up the long rope for Clara’s doctors to see. “That is the longest Beads of Courage rope I’ve ever seen”, declared the Attending. Turns out it was one of the longest that Child Life at UNCCH has seen to date. I’m glad I strung them. The aren’t who we are, but they are tangible courage, hope, and victory.
All Because Clara Was in the Hospital (March 11, 2019
Light shines in the darkness and the darkness has not overcome it. John 1:5
I can’t think of a darker place than a children’s hospital. Heavens tiny treasures are hurting, scared, and often alone. But, light shines the brightest in the darkest of places.
I never know what our mission will be when Clara is admitted to the hospital. Usually there are specific people God highlights to us so we can show love to them. In general we look for death loss and destruction. Those are clear signs that the enemy is at work. Then, we start taking back ground for Gods Kingdom.
Clara was admitted to the hospital again for symptoms of a condition that God already healed. Lest you think I am one of “those” Christians…a real medical test proved her healing . That was a clear sign that God was up to something. The devil is a liar and he will not have the victory.
So I busied myself in prayer. What was God trying to show us? I prayed for Clara. I prayed over Clara. I prayed for the IV needle to go in the first time. I commanded Clara’s vomiting to stop. I dispatched Angels. I spoke scripture and made declarations.
Then I quieted my heart. I saw angel armies circled around Clara. I then saw myself standing in their ranks. We were all dressed alike and we were going to battle!
It would have been easy for me to surrender my sword and lay down in the middle of the battlefield. My daughter was in the hospital AGAIN. The last time she was admitted I had a miscarriage while caring for her. Last week my MIL was hospitalized and rediagnosed with cancer. I have a newborn who cries all of the time. And, someone stole our credit card last week and completely drained us of every cent we had. A friend had to give us gas money.
Not this girl. Not on my watch. A warrior never retreats, never surrenders, and NEVER lays down in the battlefield! So I continued praying. If you have mentioned a prayer request to me in the last year, I prayed for you!
God laid it on my heart to pray for brain injuries. As I began praying for healing for those with brain injuries, a medical alert came over the intercom: “medical alert! Stroke team to the second floor of the cancer center!”. I couldn’t believe it. I was already praying for that as the code came on. I don’t know who coded, but I believe they experienced a miracle!
Meanwhile, Clara improved.
As I was walking around the hospital praying, God have me a word of knowledge for a sweet lady at the front desk. God told me to tell her that even though she had seen much loss, those she lost were in her cloud of witnesses. They were around her at that moment spurring her on and applauding her. I saw them! She started crying. She had lost a baby the night before and was crushed by the weight of this loss. She had an encounter with God.
Meanwhile, Clara improved.
I then had the privilege of being in the room with a doctor who was praying for a patient. As she was praying God laid it on my heart to pray for her. I approached her when she had finished praying for her patient. She accepted my offer to pray for her. I saw that God was going to use her hands to heal. She would pioneer new techniques and have greater outcomes than any of her peers. “All of this because she acknowledges my name” He said. She received the prayer and hugged me through tearful eyes. That was the cry of her heart.
Meanwhile, Clara improved.
I prayed for the nurses. We know most of them now. They each shared how much they couldn’t believe that Clara was doing so well! They have followed us on this journey from Clara’s diagnosis 3 years ago, and they know all-to-well what Clara’s prognosis was predicted to be. It encourage my faith to have others point out the progress that they see.
Then, Clara was DISCHARGED!
Lastly, as we were walking out with Clara we heard another medical alert over the intercom. It was a child from the floor that Clara had been on. We stopped as a family and prayed for that child and their family. Then we thanked God for our many blessings and took our Clara home.
Sooner or later the lying devil will back off of my family. He looses ground every time he sends light into the darkness. My goal is to be the biggest threat to him that I possibly can be. If I’m too busy lamenting about my daughters symptoms to fight for the freedom of others, I’m laying down in the battle field. I won’t be that girl!