When I see beyond me

I was barely five years old and I can still clearly see her standing in that old farm house kitchen. My Mom was all sharp angles and over processed 80’s bleach blonde hair. She was turned towards the wall where the worn out rotary phone hung. One hand with glossy red fingertips worrying the cord stretched and kinked from years of users trying to gain privacy and the other clutching the receiver and the ever present Misty. Even before she glanced over her shoulder with the miserable, apologetic eyes saturated in tears I knew something was wrong. I was already in the process of trying to hustle my four year old sister into the other room. Maybe it was the still clear memories of the past year or so, or maybe it was a carefully honed survival skill but I could usually sense trouble with just enough time to make a swift exit.

Over thirty years ago and I can hear the tinkle of the bell on the door of the local Ben Franklin the next day. In case you didn’t know, Ben Franklins were the Midwest’s small town one stop shop back then. We passed the register, aisles of fabric and yarn, and racks of clothes to the very back of the store. Down a slight incline and past the reaches of sunlight streaming from the front windows, it smelled of musty old carpeting and even older building. But, it housed tall shelves lighted by flickering fluorescent lights and full of toys! Instead of being excited, this made me suspicious. My five year old senses were ben-franklinscreaming that something was wrong. We did not go to a store and buy toys. In fact, I don’t remember even knowing this area, in the bowels of the store, even existed. And not only was my very quiet mother showing us the treasures back here, but she was telling us we could each pick out one thing. My sister immediately latched onto a My Little Pony play set. I already knew I didn’t want anything of what was going on. Whatever it was. But, Mom insisted. So, I gave in to the lure of the Cabbage Patch stuffed horse. I was relatively certain a stuffed animal would prove more useful than a My Little Pony carry along play set for what was coming and I tried to convince my little sister to do the same with no luck. My stomach dropped a little further as Mom pulled the necessary money, which she couldn’t spare, out of her black fringed leather purse.

I was right. My five year old brain struggled to understand what she was saying but I knew I was right. I didn’t want any part of this. We’d be going to live half across the country with our Dad. Just for a little while. While Mom got “better”.

In the main terminal of the airport in Minneapolis there was a large clock and a large plane. Well, at least they seemed enormous to my five year old memory. Clutching my airplane-in-airportstuffed horse, I was trying to figure out the plane inside the terminal, while I caught bits and pieces of the conversation at the ticket counter. Mom grabbed our tickets and we headed to the gate. In my child’s brain, I can hear the echo of her high heels to what seems the ticking of the second hand on that large clock.airport-clock As we approached it, this is when my little sister started to catch on and start to cry. A sympathetic stewardess with bright red lip stick met us. “Unaccompanied minors”. She’d be responsible for seeing us safely from one parent to the other half across the country. A half hour later, in our seats across from the airplane’s galley so they could keep an eye on us, my sister was still hiccupping and trying to catch her breath. I’d given her my stuffed horse and the stewardesses had done their best to distract us. Including telling us they had a couple of extra first class breakfasts they’d get to us as soon as we took off, and would we like to meet the pilot and see the front of the plane? And look here, we’ve even got some pins just like pilots wear! Throughout the flight they gave us the promised breakfast, blankets, pillows, and headphones that plugged into the armrest. Then, took turns trying to entertain the two scared, heart broken, confused little girls holding hands.

I’ve flown out of that same airport, same terminal, a couple dozen times since then. And every. time. I fight panic attacks and nausea. Just the thought of flying out of there would cause me anxiety for weeks beforehand. As soon as I’d come through the doors, I’d fight to see past the blur the crowds of people would become. To hear more than just the clicking of high heels, my head spinning to try to focus on their source. Is it high heels or that dreaded clock? I’d make my way sweating, through security and to the plane where I’d focus on chewing my gum and disappearing into a book.

This last week I had the opportunity to fly to Chicago to attend a Patient Advisory Board meeting with the pharmaceutical company and an organization called Global Genes which provides support and advocacy for rare diseases. As soon as I got my flight information I heaved a sigh. Terminal 1. By the night before I was to fly out I wanted badly to stay in and hide in my blankets for the night. Instead, I decided talking with my sixth grade girls in my youth group about Jesus was preferable to self pity. Instead, I spent the night worshiping and learning alongside young disciples.

The morning of my flight I was packed and ready to go an hour early. I listened to my favorite worship songs on Youtube and went over my flight information, hotel reservation, and meeting times a couple dozen times. Hubby, my mother in law, and Mini Hubby dropped me off. I cried for missing my babies already and made my way through the double doors. I was at the gate before I realized….nothing happened. No panic attack. No nausea. No flashback. No blurring of vision and weird hearing. Instead, my check in kiosk was at the far end of the terminal, right next to security and far away from the dreaded clock. While in line in security, I was entertaining an adorable two year old protesting her confinement to a stroller and listening to a couple dozen students excitedly anticipating their first flight behind me. A beautiful old woman in a wheelchair was wheeled in front of me at the TSA agent and I was wondering if she would have to take off the couple dozens of bracelets, giant earrings, and matching necklace she wore. I wonder if she’s headed to see family. Her bright pink lips and smile says she’s going to see someone special.

So I’m sitting at the gate, in awe of my calm, and pull out my “Show Them Jesus” book I’m committed to finishing while I’m away. I pull out my earbuds and pull up Youtube to the next song on my “suggested” list.

I can’t even make this stuff up! Thank you, Jesus!

 

 

D-Day

This week marks the anniversary of what I think of as my personal D-Day, or diagnosis day for our daughter. The day our world seemed to turn upside down and no longer made any sense. The repercussions causing me to land in the dark, and the next year learning how to rest in God, over and over again.

Reflecting on the last year, it has been on my heart to share some things with those of you who have, or are, experiencing your own trauma and suffering. Who may still be in that dark place. This letter is for you.


Dear Friend,

I see you. Always a compassionate person, I can now feel you in a way I never could before. The pain you emanate is palpable. I see the blank look in your eyes in a crowded room, not really taking in anything around you because the darkness you’re caught in has swallowed up the people and conversations around you. Your shoulders are hunched forward, curled around the pain and grief trapped in that place with you. Your smile a mere up turning of your lips. You’ve turned completely inward in the upside down. I don’t know if you’ll hear me, but I want to gather you in my arms and whisper past the shadows under and in your eyes. You’re not alone in there. Keep looking for the light and call out to Him.images (4)

Be careful. There may be bright sparks of anger, resentment and blame. Don’t follow them.They may lead you out, give you fuel to keep going, but they’ll only lead you to a life trapped in a place similar to where you are. Void of hope and truth and love.

Wait for His light. Maybe just soft at first, teaching you truth on your way to the surface, or for some people an all enveloping ride full of grace and love.downloadimages (13).jpg

Whatever that looks like for you, you’re bound to run into the hard but necessary truths. How utterly fragile, helpless and weak we are on our own. Don’t make the mistake of thinking this means you are unloved, or worthless. Just the opposite. You are so precious and loved Jesus will be with you through all of this. There’s no need to do it alone. When you look to the Lord for your strength, lay all your fears and pain at His feet, you can do all things through Him. Even THIS.images (8)

There may be friends and family that, unable or unwilling to absorb the shock, will distance themselves from it. But He will take that anger and resentment you may be tempted to and instead lead you to your knees in prayer for them and thanksgiving for those He’s placed in your life for this instead.

I assure you, His perfect sovereignty has the power to reach down and save you from this dark here and carry you all the way home. When you’re ready, He’ll be waiting. His love so powerful, perfect and faithful, He’ll take it all. And His yoke is infinitely lighter than yours.

There, in that place, you’ll find indescribable joy. The joy that comes solely from Him and has nothing to do with your current circumstances.

Dear one. I don’t know what your personal D-Day is. I don’t know if it’s a child’s diagnosis, your own, loss of a child or loved one, a life changing phone call at 2 a.m. I don’t know why God has allowed this in your life, but I know that He does. That regardless of how this feels now, His plans are to prosper you and give you hope and a future. Even if you can’t see any possible way for that to be true.

Look for, embrace and give thanks for every gift of grace. Big or small.images (7)

Hold onto Him, as He is always holding onto you. Remember His promises written on your heart and commit them to your mind.

Love and Blessings,

Bobbiimages (14)


I wish I could say that this particular anniversary came and went without any unwanted or uninvited memories for me. It didn’t. I woke to fresh memories of that day a year ago. Fear and pain springing up in place of my hope and faith. Sure that despite the blessings rained down on me over this last year I still didn’t have enough faith.

But in the remembering, I realized just how far from the dark He’s brought me, and how much joy I’ve found in His light.

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Blessed

I ran into an old friend this morning in the line at Caribou. And because I hadn’t seen her in years, I was unshowered, devoid of a stitch of makeup, and wearing whatever was in reach as I rushed to get the kids out the door for school. If I hadn’t been plagued by a kidney stone all night I might have made a quick exit before she noticed me, but I had, and I was just desperate enough for caffeine to forgo vanity in exchange for it.

“How ARE you?! I was so sorry to see your last update.”

She had seen my Caring Bridge update the day before. The one in which I shared that our oldest son had also now been diagnosed with cerebrotendinous xanthomatosis. But, low on sleep, I thought she was referring to my Facebook post about the current battle being waged somewhere between my kidney and my bladder.

Self consciously zipping my coat up higher over my rumpled clothes, “I still haven’t passed the darn stone. Which is why I look like I just rolled out of bed. I did manage to brush my teeth though…you’re welcome!”.

“You have a kidney stone on top of everything else?! You guys just can’t catch a break, can you? I can’t believe everything you’re going through. I’m impressed you’re even out of bed!”

“Oh, it’s been a very long year and a half, for sure. But we’ve been so blessed too!”

Looking at me now like I’ve sprouted a fancy new pair of horns out of my unbrushed hair, “What?”.

“Well, I can tell you that I really can’t think of another thing that would have literally brought me to my knees as swiftly and completely as something happening to my kids.”

Confused stare.

Trying to clarify, “Well, my salvation is a pretty big blessing.”

“Oh. Sure.” She was clearly looking for a blessing a little more short sighted.

“I can assure you, if He hadn’t given me the grace to see all the good in this, I am positive I really would be in bed. Curled into the fetal position, drowning in all of the ‘What if’s’ and ‘Why me’s’!”

As understanding passed across her face, the line moved and she grabbed her coffee. “Well, I hope you feel better soon! It was nice to see you. I’ll be thinking of you guys!”.

“Thank you! Nice to see you too!”.

I was thinking about this conversation after I got home and was a little more awake. She’s not the first person that has commented on my mostly positive outlook. It occurs to me that though I update the Caring Bridge site regularly I’ve tried to keep it strictly about the facts and about the kids. So, I haven’t shared on there WHY I am hopeful and the details on how I know we’ve been blessed. I feel like I could write a book on all the ways He has demonstrated His sovereignty, grace and love to me in the past year and a half.

Let me count the ways He has loved us …

1. My salvation. This is pretty self explanatory. Though He’d revealed the Gospel to me some years before this, and had been working in my life for some time, the surrender of the things I held most dear and my dependence on Him had been slow in coming. Nothing makes a person realize their own limitations like illness!

2. Hope. My hope in eternal life.The knowledge that even if this life under the sun was crazy hard, even if He chose not to heal our daughter, even if one of our other children were effected,  EVEN IF His plan was different than mine, I could hope in my forever home.


 

James 1:12

12 Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him.


My hope that no matter what the tests, specialists, and research says, our God is bigger than all of that. That the One who made the heavens and Earth had made these children as well and loved them more than a whole flock of sparrows.

3. Knowledge. Now, I’m not claiming any great IQ or anything, but He did bless me with enough intelligence to wade through hundreds of websites touting words and statistics that would make your head spin. I have a system of printing out research and case studies, highlighting the medical jargon, and translating it into layman’s terms in the margins to be able to go through and read it. I have found, with very rare disorders, that arming myself with information and verifying it with specialists has been highly beneficial.

4. Wisdom. Also, I don’t claim to any great wisdom of my own. He has not only led me to important people and information, but given me the discernment to know what I need to, when I need to know it in order to get the right care at the right time for the kids.

5. Truth. Time and time again He has poured Truth into my life. Through messages at church that seemed directly poured from His lips, to my ears. Through faith filled fellow Believers that have encouraged me and repeatedly pointed me to His word. Life giving bits of love and hope everywhere I looked! Even in the middle of the night, when pain and worry plagued me, He led me to my Bible and my knees.

6. Anxiety. Yes, the anxiety I diligently prayed relief from. So often I confessed to this anxiety, asked for forgiveness for not trusting Him, and begged that He would fill me with faith and peace. But even this, I know He made good. That anxiety fueled many sleepless nights of research, pressed me to dig deeper, look further, and to be diligent and persistent in finding medical answers. I truly believe He left this with me for our good, and His glory. Further evidence? He took it away. We’re not even close to done with hurdles and specialists, and testing, but I was on my way to our last appointment and it was gone. Now, I’m a mom, I still have a Master’s in worry. But not the anxiety that daily threatened panic attacks, headache and nausea and kept me up all night. Just gone. Because it’s no longer for our good, and His glory.

7. His Timing. The blessing of seeing His intricate weaving play out over the past year and a half has been absolutely awe inspiring!! He is The Master Weaver! Some things, of course, were not apparent at the time. But He was always working, whether I saw it or not. Let me share the basics…

Master Weaver

When I noticed our daughter’s tremor, I brought her to her pediatrician. He immediately referred us to a neurologist. To my dismay, they were booked out three months! The pediatrician agreed this was too long to wait, and referred us to Children’s Hospital. They fit her in in two weeks and did testing to look for life threatening causes. When those tests came back okay, the neurologist said he knew of a neurologist that specialized in movement disorders and referred us to him. This neurologist was great and immediately started extensive testing. As each new symptom developed, more tests. No answers. When he had exhausted all modern medical testing he referred us to a geneticist at the University.

We received her first diagnosis six months ago. That geneticist sent us back to her neurologist .After extensive research, I questioned the amount of symptoms not explained by this disorder and much of the information was from research done by a doctor who was currently at Stanford. When we saw her neurologist he said he had actually worked with this doctor previously and would contact him for his opinion.

The doctor told her neurologist to have us contact the genetic counselor involved with his research, who happened to still be at the University! I ran into a road block trying to contact her via the labyrinth of menu options on their phone system and no one was calling me back. Explaining this to a friend, she said her daughter actually had that same geneticist and genetic counselor when she was diagnosed years ago…and got me her direct phone number. She called me back the next day and after hearing of our daughter’s symptoms, diagnosis, and age, recommended that we continue with the full genetic panel.

We were warned, that patients that had undergone the amount of testing as our daughter rarely got answers from this testing, but it would be a good idea to just make sure that we weren’t missing something treatable, as many of the patients with her diagnosis had multiple disorders. She did. When the results came back, this genetic counselor consulted with a neurologist that had, amazingly, seen two other patients at another facility with this disorder. Since it is extremely rare, 1 in 200,000, and maybe only around a hundred current cases in the United States, we were elated. Until we found out our oldest son had it too. But, this neurologist already knows where to find the medication, that it needs to have special approval by the FDA, and is looking into how to get it to us.

I was led to research that proved to me that the kids diagnosis at 8 and 12 is nearly unheard of. That  because of our daughter’s atypical presentation, our vigilance and persistence, they may be the youngest in the country receiving treatment. They literally don’t yet have a pediatric dose! Average age of diagnosis is 37, when they are disabled by mental retardation or psychiatric problems. Life span without treatment is 40-50 years. Many cases are diagnosed post mortum. Sobering. I don’t know why He allowed this into our lives yet. But I do know that He has given them the best possible chances of a good outcome. We suspected nothing with our oldest until getting Joelle’s diagnosis and reading about it. Without God’s perfect work in carefully weaving this together, we could very easily have had a much more awful outcome. Now, would I have liked Him to cure these babies? Absolutely. But that’s because I can’t see the finished work. We are just a strand in it. But He can, and what a blessing is that?!