Med13L Syndrome

At the end of July, John and I noticed something peculiar about Tristan's hands. On one hand, he has 2 creases, like the rest of us. And on the other, he only has one. I remember in all of his specialist appointments at Phoenix Children's Hospital, they ALWAYS looked at his palms to see the creases in his hands. Nobody ever mentioned anything about why they did, so I didn't think much about it. Fast forward to July, and I was determined to find why he, of all people in our family, has different creases. 

Side note: the more I learned about the creases in your palms, the more Tristan's limited dexterity and lack of appropriate-age pincer grasp made sense. The hand with only 1 crease doesn't allow his thumb to extent as much as the hand with 2 creases.

I digress.

Now I want to preface this by saying that I had all but given up on searching for what made Tristan special. It gets really tiring always being told that on paper, your son is fine, when clinically, he is not. We spent 4 and a half years looking for answers, but only found dead ends. It starts to mess with you mentally as a parent when nobody can tell you the "why" behind why your child can't talk, or has really low muscle tone for no apparent reason. You start to question your sanity.

Anywho, back to his palms. I started researching why people have 1 crease vs 2, and there were a lot of genetic conditions that contribute to the number of creases. Most of them were without a doubt not what Tristan has. There was one condition that Tristan marked almost all of the boxes for. The more research I did, the more sure of it I felt. I tried to keep my expectations low, because I knew the road of disappointment all too well. But I went ahead and made an appointment with his geneticist anyway because I just *knew* this had to be it.

By some miracle, she had a cancellation for the following week, the beginning of August. I knew this had to mean something huge because it usually takes at least 3 months to get in to see her. The appointment day came and I confidently went in and said that this is for sure what he has and we needed to push insurance to approve the genetic test to confirm it. To my dismay, we already had the test done 2 years ago and what do you know, it came back normal. I felt absolutely defeated and like all my somewhat-healed wounds of "rejection" were torn wide open again. Internally, I decided that this was for sure the end of the road for looking for answers. I couldn't handle going through this all over again.

She did say there was one final, end-all-be-all test that we could do. Whole Exome Sequencing. We tried getting it approved from insurance 2 years ago, but they denied it, claiming that it was too expensive and it wouldn't change our plan of care, so what's the use? But lately they have had some good success with insurance approving it. This test looks at ALL of your genes. There are roughly 20,000 genes (that we know of), and we only know what roughly 6,000 of them do (a few years ago, they only knew what 5,000 of them did). But she was confident that we would find something to give us a better direction. The test was a simple saliva swab and would take about 3 months to get the results.

Walking through Goodwill on September 10th, trying to pass some time before afternoon school pickup, Phoenix Children's Hospital called. They only call for 2 reasons; to remind me of an upcoming appointment, or to tell me that Tristan's test results were normal. I was starting to panic because I couldn't remember having an upcoming appointment, and it hadn't been 3 months yet to get anything good back from his test. When she said that she was with the genetics office to talk about some test results, my heart dropped to my stomach. 

"We did find a likely answer for him."

Luckily, I record all my phone calls, because I had to go back and listen to it again because I don't remember a lot of what she said. I spaced out a bit because THEY FINALLY FOUND SOMETHING. What was this world I was living in? I didn't know that such a place existed, where someone could shed some light on Tristan. Every diagnosis we have been given, aside from Apraxia of Speech, has been a temporary diagnosis, something to really help Tristan receive the services he needs rather than giving us a definitive answer. She went on to explain that there was a mutation found in the Med13L gene. This was a new change in him; it wasn't something that he inherited. 

According to Genetics Home Reference, "This gene provides instructions for making a protein that helps regulate gene activity; it is thought to play an essential role in development both before and after birth. The MED13L gene mutations that cause this condition alter the function of the MED13L protein or reduce the amount of protein present, impairing normal control of gene activity."

After 4 and a half years of searching and questioning and second guessing myself, we finally had a cause for why Tristan was, well, Tristan. The next few days I spent a lot of time researching what little information was available for Med13L. Unfortunately, not a whole lot is known. This mutation was only discovered within the last 5-10 years, so they don't know the long term effects that come with this condition. It is on the more rare side, only happening 1.6 times in every 100,000 births. We are truly blessed because a lot of kids who have this also suffer from epilepsy or heart defects, which Tristan does not have either. All of the kids that have been studied have developmental and intellectual delay, and most develop no language, while a few develop a small number of words. There is no cure or treatment, just therapies to help him continue developing.

At the end of the day, the insurance company was right. This doesn't change our plan of care whatsoever. We will continue to go to 6 therapies a week and see certain specialists a little less. But I cannot describe the weight that was lifted from our shoulders when we finally learned why this was happening. It has been a relief, now, to recognize and understand that Tristan might never speak. And it's not because of his hearing (again, I can't tell you how many times we have met with the audiologist to test his hearing), or because for a second I thought he might have autism. I hate saying this out loud, but this almost made me feel more "accepting" of Tristan's condition, because we can now definitively say that something changed in his body, and this was no longer a question of "well maybe he just doesn't want to talk" (which I have had people say...)

I am truly blessed to be Tristan's mom. As hard as life is between therapies and doctors appointments and trying to decipher what he wants, I truly can't imagine my life being anything better than what it is with him in it. 

Tristan's Diagnosis

The day has finally come! We FINALLY have some answers!!

Tristan has been diagnosed with Supermanatosis, i.e. training to be the next Superman.

But really, we don't have a legit diagnosis. As you could probably guess, his MRI came back normal; no damaged, missing, or extra pieces.

And I'm okay with not getting any definitive answers.

I think. (If making up a silly diagnosis to help me move through this, then he has 529 silly diagnoses)

You see, it's funny how our brains work. After we got the news that his hearing was just fine, the next week I started to notice how much he really *does* hear and listen. I noticed that he was more responsive, he would sign more words and instigate signing instead of waiting for us to ask him to sign what he wanted. He would follow directions (a little better) and really actually listen.

I had been focusing too much on the fact that he was failing his tests (for reasons we may never know) that I had failed to notice all the little things he was accomplishing; I wasn't looking at the big picture. In the almost 4 weeks since his hearing test, he can now sign Mom and Dad and put 2 or 3 signs together to ask for something or tell us what he needs. He IS improving. He IS gaining more skills and growing and turning into a wonderful beautiful boy.

Maybe I've been holding him back because I just keep looking at tests and waiting for results instead of  watching him to do his thing.

**cue MAJOR mom guilt**

**and lots of tears**

Since I've been so focused on finding out the why, I haven't noticed the how. We had family pictures taken on Friday and I think there is only one picture with him looking at the camera, because he was constantly looking around and trying to see if there were any dogs or bunnies he could chase. He was just go go going all the time.

He is fearless. He is brave. He is a heck of a lot stronger than you think, especially when he wants to keep something you are trying to take away from him. He loves people so fiercely, especially his sister and brother. He hates being put in a stroller because he just wants to walk ev-er-y-where. He gets mad when he doesn't want to do something, and laughs so hard when he is happy. His smile lights up the room when he sees someone he loves and practically falls out of your arms to reach for them.

It was a rough weekend, trying to process the news and see what would be best for our family moving forward. And all we are going to do now is love. We're hanging up our hats (for now) on searching for answers. We're taking a step back and are going to continue with therapy and preschool and doing typical toddler things.

But most importantly, we are just going to love him with all we've got.

And that will be enough.

A bride, some kids, and Superman

What do you get when a bride, some school kids, and Superman go on a field trip together? You get an insurance company who denied an MRI, an extensive hearing test that resulted in "no hearing loss", and a mother who now dreads getting "good" news.

Let's start where we left off.

I called a few days after our meeting with Dr Bernes (Tristan's new neurologist) to set up all three tests that he had ordered. We got everything scheduled for October 16, 7 weeks away.

A few weeks pass by, and I learned that Tristan's insurance company had denied his doctor's order for an MRI. My initial reaction was #ofcourse. I mean, they've only denied his helmet, his first round of genetic testing, made it difficult to get his walker, and now his MRI. Why *wouldn't* they deny it? Makes perfect sense. Every doctor, neighbor, therapist, and dog that I have spoken to about this, are all completely confused as to why they would deny an MRI. Alas, here we are, MRI-less.

Luckily, because we no longer needed to wait 7 weeks to have an MRI done (they were the department that was booked out that far), we were able to move up his BAER (Brainstem Auditory Evoked Response, aka hearing test) and EMG (elecromyagraphy, aka nerve and muscle study) to Wednesday, September 26.

If you look hard enough, you can find a silver lining in every situation.

The scheduling of these two tests all happened so quickly and we only had to wait one week before the new test day arrived. Four hours before his tests, Tristan had his hearing and vision evaluation for preschool. To my delight, Tristan still failed his hearing test.

"Why are you delighted he failed his hearing test?!!!"

I had been having some dreams the last few weeks where we had been building up to this all-important hearing test that was going to give us answers. We had worked so hard to get to this point, only to have his hearing test come back normal. So it was nice to hear that he was *still* failing, which led me to believe that his BAER would fail as well and we would finally know why he was continually failing.

We headed to the hospital and got checked in. The testing department we were in had a wonderful play area that Tristan was free to play in while we waited for him to be taken back. It was rough at first, mainly because he had been fasting, and it was now past lunch time. But after resorting to playing Bambi on my phone (his absolute favorite movie), the nurse shortly came up to take him back. They informed me it would be 2-2 1/2 hours until he would be done.

I waited a total of 1 hour and 12 minutes in the waiting room when the audiologist walked out with the results. I knew her test was second, and I was shocked to learn that both tests were completed and Tristan was now in Post-Op waking up. The audiologist and I spoke before the test, and she has seen Tristan in her office twice before and knows his history with failing tests. So when she came to me and said "Tristan passed with flying colors. There is no evidence of hearing loss. He has beautiful brain waves" my jaw literally dropped.

"Wait, what?"

"He is hearing just fine. There was no fluid in his ears, and his brain reacted perfectly to the frequencies both through his ear canal and behind his ear."

I was at a loss for words. This was entirely contradictory to every single hearing test that he had previously had. Something must be wrong with the test.

"So if he's hearing just fine, why isn't he talking? And why has he failed every single hearing test previously?"

"That is something I cannot answer. Is he currently in speech therapy? I would also recommend seeing a developmental pediatrician."

At this point, I was trying to contain the smoke that was about to explode from my ears. Yes, he has been in speech therapy for well over a year.

Once a week.

Every.

Single.

Week.

Not to mention every developmental pediatrician is completely booked up and not currently taking in new patients.

Square one. How lovely to see you again.

Not only did I hear the worst good news I could, Tristan did not enjoy waking up from anesthesia. I was on the verge of tears while he kicked and screamed and cried and hit. I was barely keeping it together. In my arms, flailing around, was a sweet little boy who, while yes walking on his own, still needed support with walking. He could not communicate very well his needs, dislikes, wants, or frustrations. But every test thus far has shown that there is absolutely nothing wrong.

Nobody can give us an answer as to why this is happening to Tristan.

Nobody on this earth.

A few days later, we hear back from the Neurologist with the results to the EMG.

(I feel at this point, you, reader, should be able to speak the words for me.)

"The test results came back negative and everything is fine."

Currently, I did not have anything else to go off of. My tank was empty. We couldn't get the MRI, unless we wanted to pay $15,000, and there were no other tests that would help us put a name to what Tristan has. Or even just to know what his future is going to look like based on other people who have the same condition.

Do you know how exhausting it is to have people at the store, really old friends who mean well, or the ladies at church ask me if we know what Tristan has? It's exhausting. Because very few people know how to react when I say that we don't know. As much as they try to hide it, there is always a confused, taken aback look on their faces when I tell them that we don't know why he's developmentally delayed and non-verbal and has trouble walking. And it tears down a little piece of my heart every time. It's a double edged sword because I'm glad that people come up and talk with me about Tristan instead of just staring. But it's also hard when they don't know what to say because they are uncomfortable for whatever reason and things get aca-awkward.

It's even more exhausting when I tell some people that I hope his tests *don't* come back normal because I just want SOMETHING to go off of. I just want an answer. And they respond with "But then that would mean that something is wrong." And deep down inside I just want to shake them and say "BUT SOMETHING IS WRONG, CAN'T YOU SEE?! AND NOBODY KNOWS WHAT OR WHY!!!" I want a single test to come back as abnormal so that I know I'm not going crazy and it's not all in my head. And sometimes when people say these things, I feel shame. I feel shame that I am a bad mother because I want a test to come back as positive for something.

Out of my anger and frustration and confusion and every other emotion besides happy, I called Tristan's insurance to find out why they denied the MRI. Much to my surprise and even more confusion, they informed me that it had been approved.

"Say that again?"

"We show that Dr. Bernes called in to do a peer-to-peer review and the procedure is approved until December 23."

I'm not sure to how to describe the feelings that were *continually* going through me at this point. SO many conflicting feelings and emotions.

I was SO very grateful that they finally approved the MRI.

I was so angry that nobody bothered to let me know.

I was sad that Tristan just went under anesthesia and he would need to go under again in less than a month. What would that do to him? How would he react?

Was his original date for the MRI still in place?

Would we need to wait 6 more weeks?

Seriously. So many conflicting emotions and thoughts.

But, we played it cool. Or at least tried to. Turns out that the MRI was still scheduled for October 16. Turns out there is no scientific proof (according to PCH) that anesthesia given twice with at least 24 hours in-between has any harmful or dangerous side effects. Turns out that I'm still really good at waiting.

Life continued on. We spent a glorious week in New Mexico visiting my sister during October break. We came home, got readjusted to normal life, and had Tristan's MRI procedure on Tuesday, October 16. The hospital said that we should have the results from his neurologist within 24-48 hours.

It is now Friday, October 19. Over 48 hours later.

Here we are. Still waiting.

Running a marathon

I’ve been training for a marathon! Okay, not really training. I’m more just running a marathon. Okay, I lied again. I’ve been crawling through a marathon, for the last 2 years and 10 months. Tristan was born 2 years and 10 months ago. And it has been an exhausting 2 years and 10 months. Now don’t let that word confuse you. Yes, it has been tiring. But in all the ways a parent or friend or uncle or sister to a “normal” child, wouldn’t think of. It has been GREAT watching milestones happen. Seeing him run in the opposite direction, laughing hysterically because you are chasing him. Or maybe just watching him line up his cars over, and over, and OVER again. But it has been exhausting trying to figure out why Tristan is anything *but* normal.

It all started July 2016. Tristan, now 9 months old, wasn’t sitting up on his own. I chalked it up to the fact that he had been wearing a helmet to correct his misshapen head for the last 4 months and it was throwing off his balance. We were already seeing a physical therapist for the last 6 months, so we decided to continue seeing her in hopes that it would speed up “whatever” was holding him back. Well it turns out that Tristan wouldn’t learn how to sit on his own until around 11 months of age. Pulling to stand? 16 to 17 months. Walking on his own? I’ll get back to you on that.

At this point, sometime mid-2016, I ask to see a neurologist. As with any specialist, we waited a few months to get in for the initial consult. September rolls around and we finally meet a new doctor. After going over Tristan’s (short) history, he orders an MRI to take a look at Tristan’s brain. 4 hours and 2 minutes into the marathon, and I can see the finish line from here! Three (excruciatingly slow) weeks go by, we finally arrive to his MRI day. Not only did they forget about Tristan after putting us in the prep room (causing him to then go a total of 9 hours without eating or drinking), they didn’t tell me to wait upstairs instead of in the lobby for him to wake up from his anesthesia, which meant he woke up from anesthesia without me there.

A few days later, the results came in. They read (in layman’s terms) NOTHING OF IMPORTANCE HERE. The literal words used were “UNREMARKABLE BRAIN”.

So here we are. Mile marker 25, THE HOME STRETCH. And it turns out it’s only mile marker 2.5, not 25. Back to square one we go. After our follow up appointment a few months later, the neurologist sends in a referral to a geneticist, and I feel that we are FINALLY going to get some answers. Because geneticists must have the answers, right? Again, I’ll get back to you on that.

Our referral was sent out in February 2017. Life got crazy, and we decided to get pregnant! Meanwhile, Tristan is now taking speech therapy, on top of physical and occupational therapies. And I have a daughter in preschool, and now a newborn. Naturally, we decided to put the hunt for a diagnosis on hold. Okay, it was really so I didn’t have a midlife crisis in my 20’s. (I’ll still get back to you on that)

Two months after Roland was born, I decided that we had had enough waiting at mile marker 2.5, and we were going to finish running the damn marathon!

August 2017. I talk with Tristan’s pediatrician (side note: Dr. Seitter has been a GODSEND. He has been a huge help and has always given many suggestions on how we can proceed with doing what is best for Tristan) and he sent in a referral to see a geneticist. A week goes by, and my new-again-mom-brain finally remembered that we already have a referral in to see a geneticist. What ever happened to it? Why didn’t anyone call me to schedule months ago?

After a call down to PCH (Phoenix Children’s Hospital), it turns out that the referral got lost in paperwork. Not to mention, the geneticist is scheduling 8 months out. Yes, they still have our first referral from February 2017. And we aren’t going to get in to see her until April 2018.

#whatthedamnhell

After a few (not so happy) phone calls to the scheduling and office managers, there is nothing that can be done, except to be put on a cancellation list that is currently 200 patients long.

So, we wait.

“You'll be on your way up! You'll be seeing great sights! You'll join the high fliers who soar to high heights. You won't lag behind, because you'll have the speed. You'll pass the whole gang and you'll soon take the lead. Wherever you fly, you'll be best of the best. Wherever you go, you will top all the rest.

Except when you don't. Because, sometimes, you won't. I'm sorry to say so, but, sadly, it's true. That Bang-ups and Hang-ups can happen to you.

You will come to a place where the streets are not marked. Some windows are lighted. But mostly they're darked. Do you dare to stay out? Do you dare to go in? How much can you lose? How much can you win?

And IF you go in, should you turn left or right... or right-and-three-quarters? Or, maybe, not quite? Or go around back and sneak in from behind? Simple it's not, I'm afraid you will find, for a mind-maker-upper to make up his mind.

You can get so confused that you'll start in to race, down long wiggled roads at a break-necking pace. And grind on for miles cross weirdish wild space, headed, I fear, toward a most useless place.

The Waiting Place...

...for people just waiting. Waiting for a train to go or a bus to come, or a plane to go or the mail to come. Everyone is just waiting. Waiting, perhaps, for a Better Break or a string of pearls, or a pair of pants or a wig with curls, or Another Chance. Everyone is just waiting.”

Thanksgiving happens. Then Christmas too. Cupid shoots a few more arrows in February. We did a lot of waiting. All the while hearing people say, “Oh I’m sure he’ll be fine.” Or, “He’ll grow out of it.” But there is something curious about being a mom. God granted us moms something special, called “a mom gut.” I’m not just talking about the (not) wonderful pooch we get after giving birth that seemingly will never go away. Or the gut we get from drinking so much Coke and Dr Pepper because tape won’t keep our eyes open enough from lack of sleep. I’m talking about that feeling that mom’s get when they just *know* something isn’t right. Week after week, month after month, people (probably) thought I was crazy because I was the only one who thought this was something more. And now we finally are going to meet someone who is going to agree with me!

April rolls around and the appointment lasted 3 hours. All with Tristan not being able to eat. Not to mention I had Roland with me, so feeding him and not Tristan? I legit think I went crazy thinking that was a good idea. The geneticist was very nice, and very knowledgeable. She had a good plan, and more importantly, she agreed with me! And we were on the fast track to finding a diagnosis. We had some blood work done to have a Chromosomal Microarray done, along with a string of other tests that would hopefully pin something down. Now we wait for the results.

Another visit to Dr Seitter resulted in us getting a referral to see an audiologist, as well as an endocrinologist and GI. Once more, more waiting to see a specialist.

6 weeks go by and we are going in to see the Audiologist! I was most excited for this appointment because Tristan, at this point, was mostly non-verbal. He knows a few signs, and will say Mom, Mo’ (more), Moo, and Mo (our dog, or any dog for that matter). The appointment itself was really interesting. I learned some cool things about the ear and how language and speech go hand in hand. Three tests were done, and the conclusion was that he has fluid build up in his ears, and *currently* has hearing loss. She recommended we take some decongestant for 6 weeks and come back again to test again to see if the fluid cleared up at all.

It finally feels like we’re moving past mile marked 2.5! We’re finally getting somewhere!

That same day, we got the results back from Tristan’s genetic testing. Lo’ and behold, everything came back normal.

Come again?

Everything came back normal. And she requested that we come back in 6 months to go over our next plan of action.

SIX MONTHS. Welcome to mile marker 2.6.

I was not having this. All of this waiting was building up some anxious/angry feelings. I was done having doctors kick Tristan’s case down the road because he’s not dying and it’s not “urgent.” How is Tristan being in the 2^nd percentile for height and not gaining more than 1 pound in almost 2 years not “urgent?” How is Tristan not being able to walk on his own at 33 months not “urgent?” How is Tristan not being able to communicate, thus causing many tantrums that include hitting and biting, not “urgent?” No. I was not going to wait 6 more months.

Mama Bear came for a visit.

I left a very stern and direct message for the geneticist and her assistant stating that I was not going to wait. Because waiting was not going to prove anything. We’ve been waiting 2 and a half years, to see not a whole lot of improvement. 6 more months was not going to show anything. I demanded that we get in sooner.

And I was heard. She was able to double book an appointment and get me in in July, rather than October. More waiting, but less waiting at the same time.

Fast forward to July, and we meet again with genetics. We talk more genetic testing, and proceed with the next step. Luckily, this appointment was only 2 hours long, and Tristan could eat! We left the appointment with tests to check neuromuscular disorders, and a referral to an excellent neurologist.

It’s finally our time to see an endocrinologist. He was not concerned about Tristan’s height-weight ratio, because it’s within a normal range. Take into account that he’s almost 3, that’s where we have a problem. Once again, more blood work to do more testing. He then wants to see us back in 6 months. Again with the 6 months?! His reasoning, though, made sense. He wants to see how his growth continues to develop, to see where to go. Because it’s only been in the last 6ish months that things have started to decline on his growth curve. If it keeps going the way it’s going, then we have a really bad problem.

6 weeks later, test results are in.

Growth hormone levels: Normal

Celiac: Negative

6 more tests that I do not understand the importance of but are obviously important: Normal

Square one, we meet again.

Another visit to Audiology, after taking a decongestant, shows that he still has fluid built up in his ears, and we now need to see an ENT.

Roland turns 1, we start swim lessons for Eloise, and life continues on. A much-needed trip to Utah ensued, and we were all emotionally charged up to keep trudging along.

Remember the neuromuscular tests? You guessed it. Came back normal.

We waited 3 weeks to get into an ENT that Dr Seitter highly recommended, only to be extremely disappointed in how we were treated. I felt more like a number than a patient. At no point did he ask if I had any questions, and rushed through the entire appointment. I was so caught off guard, that I didn’t stand up for Tristan. I failed him. I failed him as his mom, and his advocate. I failed to fight for someone who couldn’t fight for himself. The tests came back inconclusive and he wanted to see us back in 3 months to take the tests again.

WHAT IS IT WITH DOCTORS AND WANTING TO WAIT ALL THE DAMN TIME?!

We left, and I felt defeated. A few days go by, and I just couldn’t take it anymore. We were going to get a second opinion. The wonderful office staff of Dr Seitter sent in a referral to see a doctor at PCH (the previous ENT was the first doctor we’ve seen that was not at PCH.) They call me within an hour of the referral being sent over, and inform me that the first available appoint was in 3 months, the day AFTER our follow up visit with the ENT. So much for a second opinion… A few more days go by, and I still am not sitting well with the fact that Tristan can’t hear, and we have to wait, just to even see what our options are. It’s not like we are waiting for his hearing aids to be made, or surgery to be scheduled. We haven’t even gotten that far! I did some more digging, and found another ENT that was 40 minutes away. He had wonderful reviews on all the medical reviewing websites, so I felt pretty confident it would be a good experience.

We show up to the appointment and are taken back almost immediately. The nurse was so friendly and we didn’t wait long for the doctor to come in. The first thing he does, before even shaking my hand, was greet Tristan and give him a high five. It was so heartwarming to have someone treat Tristan so wonderfully after having a not so pleasant experience previously. He explained E-VER-Y-THING about every test we did, the different options, and how this is happening. After completing two tests, he passed one and failed another. The doctor ordered some more in-depth tests to measure Tristan’s brain activity when certain frequencies are played.

We’ve made it to mile marker 12!!!

2 days later, we meet with a new neurologist who came very highly recommended by Tristan’s geneticist. He is specialized in neuromuscular disorders and, according to the Geneticist, has many patients like Tristan. Dr. Bernes was an interesting person. He is rather old and doesn’t complete all of his sentences before starting new sentences. He was so fascinated with Tristan, though. He was interested in how little muscle mass he has, and how no matter what angle he whacked Tristan’s knee with the “knee whacker” (it’s a knee whacker Vern, A KNEE WHACKER!!! (name that movie)) there was no reaction. We had a nice long conversation about everything and made a new plan. When he found out that Tristan would be sedated for his ABR (audiology exam), he ordered an MRI, EMG, and NCV tests. The MRI will be able to show if there are any differences in Tristan’s brain growth from his last MRI. The EMG and NCV tests measure how your muscles and nerves work together, if at all. These, hopefully, will lead us to a diagnosis that will help us prepare better for Tristan’s life to come. Unfortunately, you guessed it, we’ll be waiting a while to even get these tests done. It’s not easy to schedule 3 different tests, performed by 3 different people, in 2 different departments. So, we wait.

In the meantime, to help with insurance purposes and getting Tristan into school, Dr. Bernes diagnosed Tristan with Cerebral Palsy. He said this isn’t a concrete diagnosis, and it is only temporary (until we find something better), but it is as close as we can get to some kind of diagnosis.

So, this is where we are. August 24, 2018. Waiting at mile 12.

Being Let Down

This topic has weighed heavy on my mind for the last week or so. And the only thing that seems fitting, is to write it down and share it with you.

We are all human. We all fail. We all disappoint. And we all let people down. To some, these things happen more than others. And to some, hardly at all. There are so many different factors that make up our decisions to deceive or hurt or betray. But two things remain constant. We are all children of our Heavenly Father. And we all can feel the healing power of the atonement.

More often than not, the atonement is spoken about in terms of repentance, because that is it's main purpose; to overcome spiritual death from sin. But I'd like to touch on a smaller (yet still important) purpose; healing and mending our spirits when someone has let us down.

It's a hard thing to swallow when hurtful words and actions are thrown your way, especially from people you care about. But you have two options.

First, you could just "sit" on it, or rather "in" it. Most of the time, when hurtful situations arise, it's just crappy. There's nothing good about it. It doesn't smell pretty, look nice, or sound friendly. It's like a bucket of poo being thrown at you. Nobody (to my knowledge) asks for a bucket of crap to be thrown at themselves. So you can sit in it and let your heart and mind be filled with crappy thoughts and soon consume you, and then slowly drive people away. I don't speak for the Holy Ghost and people around you, but if it were me, I wouldn't want to be around someone covered in poop. No thank you.

Second, you can let the power of the Atonement wash over your dung-covered body and clean you. Let the Holy Ghost comfort you and surround you with flowers and puppies. Let the hurt, pain, and sadness wash away like the tears that fell from Christ's face in Gethsemane. Let these things remind you that we are all human, we all fail, we all disappoint, and we all let others down. And unfortunately, sometimes you are on the stinky end.

"When life is too hard to stand, kneel"

This quote is often used when talking about trials. The trials I think about when hearing this quote deal with bills, raising children in this day and age, stress, or simply "life is just too busy to breathe". But I promise you, kneeling and asking for peace and understanding at to why someone threw crap at you, really helps wash away the stench. Prayer also opens up the avenue for you to ask for a softening of the "waste-giver's" heart, for them to hopefully see that you are just human as well. You will begin to see through the mess and filth and see a child of God on the other side, trying to make it through life just like yourself. You might not be able to see their struggles, but I'm guessing if they threw a bunch of crap your way, their life is not the sunny field of tulips you might think it is.

Feeling the power of the atonement, the power of prayer, and the love our Father in Heaven has for us is not like a few raindrops in a drought-stricken desert. It is a roaring rainstorm, quenching the dry ground with its everlasting drops of moisture. It is a perfect sunset on a cloudy day. It is the warmth of a towel fresh from the dryer. It is something memorable, comforting, and something not to be taken lightly. Heavenly Father loves us, more than you or I will ever understand. With that love comes understanding that we will be hurt. That is why the atonement is there and waiting for us to partake of it's blessings.

Disappointment is hard. But with the atonement, it doesn't have to be. Nor does it have to hurt. So which will you be surrounded by? Poo? Or flowers and puppies?

Crippling Problems

Let's be real for a second.

I have a problem.

It's a rather dangerous problem and never ends well.

I get jealous.

Very easily I might add.

I don't know where this problem of mine stems from, but I know that it isn't growing into a beautiful bouquet of roses. It's growing into an ugly pile of thorns inside my heart.

This problem of mine got me into a lot of trouble when I was younger.  And to be quite frank, it's getting me into trouble now.  With social media so readily available to drown yourself in (which is almost expected), I tend to sit and stew about why Holly Jane's daughter has those adorable leggings that I only dream of, why Susy-Talks-A-Lot and her husband go on extravagant family trips every (what seems like) 6 months, or more recently why Kathy Jo's business is more successful than mine.

I let other people's actions and blessings control my happiness.

Why would I allow them to have that kind of control?  Couldn't tell you, because I haven't figured it out yet either.  All I know is that this jealousy leads me to a very dark place where love and happiness cannot reside.

In a talk given by Jeffrey R. Holland, he states:

"Brothers and sisters, there are going to be times in our lives when someone else gets an unexpected blessing or receives some special recognition. May I plead with us not to be hurt—and certainly not to feel envious—when good fortune comes to another person? We are not diminished when someone else is added upon. We are not in a race against each other to see who is the wealthiest or the most talented or the most beautiful or even the most blessed. The race we are really in is the race against sin, and surely envy is one of the most universal of those.

Furthermore, envy is a mistake that just keeps on giving. Obviously we suffer a little when some misfortune befalls us, but envy requires us to suffer all good fortune that befalls everyone we know! What a bright prospect that is—downing another quart of pickle juice every time anyone around you has a happy moment! To say nothing of the chagrin in the end, when we find that God really is both just and merciful, giving to all who stand with Him “all that he hath,” as the scripture says. So lesson number one from the Lord’s vineyard: coveting, pouting, or tearing others down does not elevate your standing, nor does demeaning someone else improve your self-image. So be kind, and be grateful that God is kind. It is a happy way to live."

 I mean, I love pickles, but being jealous and envious of others really is like downing a quart of pickle juice. And sadly, I have pickle juice up to my eyes.

I know a lot of people who are stronger than I am.  My husband is a great example of that.  Any time I have a little fit about "Why can't we have that" or "Why does she get those" etc, he always gives very insightful words or wisdom and ensures me that we have everything that we need.  (This is one thing I'm not jealous of: other people's husbands.  I wouldn't trade mine for the universe.)

Sure other people might stumble into wealth, work their tail feathers off to get where they are, or are blessed with many blessing, but we've worked pretty hard too.  My husband's job allows me to stay home with our beautiful daughter, we have a roof over our head, a car that runs, food continually on the table, and love that will last an eternity.

Okay so I might not have the newest model car, and I might get everything on clearance, but that is not how the Lord measures my worth.

Thomas S. Monson said:

"The Savior provided assurance of this truth when He taught that even a sparrow shall not fall to the ground unnoticed by our Father. He then concluded the beautiful thought by saying, “Fear ye not therefore, ye are of more value than many sparrows.”"

Not to mention the fun fact that none of these earthly things will matter in the next life.  I won't be able to take my daughter's 27 hair bows or our (in)expensive TV.  I will, however, be able to take the memories of laughter and learning, the bright light in my daughter's eyes, and the love that is created in our home.

"God is infinitely more interested in our having a place in His kingdom than with our spot on a mortal organizational chart." -Neal A. Maxwell.

Even though I might stumble and fall, fail over and over again, and cause my own sadness and misery instead of peace and happiness, I know that I am great in the sight of the Lord.  And I know that He will help me overcome this (very) crippling problem.

Growing pains

Between myself and Eloise, Eloise is doing all the growing, and I'm dealing with all the pain. She has started crawling this week, and I'm having a really hard time with it.

I knew it was inevitable that Eloise would grow up. And I knew it would be difficult. I just didn't know how emotionally hard it would be for me to see her change; to become a completely different baby than what she was 8 months ago. 8 months ago I would beg for another hour of sleep. Now, I beg for one more snuggle, one more wave, one more pull to the hair to give a kiss, or one more clap of the hands. I love seeing the wheels turning in her head and the excitement from finding something new. There is so much wonder and awe in her eyes.

I never knew how much I could love a human being. Even on our rough days, which tend to happen more frequently than I had planned, I would never trade her for the world. I find no greater joy than being her mom.

"While we try to teach our children all about life, our children teach us what life is all about."

--Angela Scwindt