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

Thanks

This Thanksgiving, I have an awful lot to be thankful for. For one, I have my beautiful daughter who lights up my life and brings so much joy and happiness to my pretty boring life. Secondly, my husband. He pours up with crazy ol' me and somehow manages to make me laugh when I don't want to. He truly is the best husband I could have asked for. Lastly, I am gratefully for the Lord's tender mercies in disguise. We were supposed to be in Utah for Thanksgiving, but due to some unexpected things at John's work, we had to cancel last minute. And boy was I mad. We decided to go up next week, instead of just canceling, and it is a huge blessing. This is the first Thanksgiving I will have with my family in 5 years, we'll be able to spend time with some of John's family who would have been out of town this weekend (and they'll get to meet Eloise), I'll be able to go to a pretty awesome woman's wedding next weekend, and the list continues. I was pretty excited to be in Utah this week, but I'm glad that the Lord had a different plan.

Overall, this Thanksgiving I am grateful for my family. And because I couldn't pick just one family picture, here are a few, or all of them :)

The 6 month old mom and baby

6 months ago, I was holding my daughter, or staring at my husband holding her while in the hospital. I just became a mom a few hours prior, and I had no clue what I was in for. Over the past 6 months, so many changes have happened to my little family, and so many lessons were learned.

First and foremost, I didn't know our bodies were capable of running on such little sleep. Eloise has always slept in her crib and slept fairly well from the beginning. As a newborn, she would sleep for up to 4 hour stretches. Then we left the "4th trimester" as my sister calls it, and by the time she was around 3 1/2-4 months, she decided to wake up every 2-2.5 hours to eat. And boy that sucked. She eventually got back to a 4 hour stretch schedule, and the last week or so has only been waking up once to eat, sometimes not at all. But our bodies really are remarkable!

Second, and a very close second at that, it is beyond my comprehension how you can love something so much. When I was pregnant, I knew that I loved our daughter because you just..do. After watching her grow over the last 6 months, my loves grows exponentially each day. I can't put it in words how much I love her.

Next, what baby wants, baby gets. Plain and simple, no real explanation necessary. 

Lastly, moms are bullies (not all moms are). I am not one to pick my child up a split second after she starts crying (unless she is obviously hurt). Nor do I rock her to sleep anymore. Sure, there are some nights where I have a hard time putting her in her crib because I just want to snuggle her all night long. But she goes to bed slightly awake, just like any other human being. And after voicing some of my parenting styles to other moms, a lot of shaming and bashing ensued. You can read more about it here.

Some fun facts about Eloise:

1. She loves her toes.

2. She definitely knows who her mom is, and will scream if a stranger holds her (or in the case of her doctor's appt this morning, if the stranger touches her face.)

3. She is really happy in the morning.

4. She has 2 teeth, and got the Allred genes, measuring in the 95th percentile for height (for the 6th consecutive month).

5. She loves when daddy tickles her with his beard.

6. She loves, and I mean LOVES our puppies, and will stare at them all the time.

7. She still hates being on her tummy.

8. She loves when you clap.

9. She will stick her hand and arm out toward you as if she is waving.

10. She is afraid of the dark, but only in the car.

Well enough about me babbling on about the last 6 months, enjoy some pictures of my Eloise :)

This is her normal, resting face. (98% of the time.)

 Until you bring out her favorite toy!

 A little orange cow.

"I have all the awesome things!"

 Every. Single. Time. we get in the car, she immediately stares up at the light for a few seconds and starts talking.

Nom nom nom.

I have absolutely loved these last 6 months. And I am so happy that I am privileged to be Eloise's mom. Until next time!