Starting Line

260571F4-BC3F-4BF3-BA1C-3CABD96E43B6This last year has been a total tailspin in the medical world in our house. Well, the past two years. Well…forever, basically. If you don’t know my story, I don’t mind telling you one day. In a nutshell, I have lived in this medical world for my whole life, literally. I grew up with a dad with a terminal illness, double lung transplant, early death, and all the other things. Then came child #1 who came home on our one year anniversary. Our NICU baby who didn’t breathe when he was born like he was supposed to. He came home on a monitor that shrieked like a fire alarm if he stopped breathing, and of course we had to take CPR to bring him home. I wasn’t kidding when I said forever. Then came child #2. There are so many other details, but they aren’t necessary for you to understand the big picture that medical crisis is unfortunately my normal. It’s the way my brain is conditioned to handle stressors, things that some couldn’t navigate I have learned how to. I am the person you want in a hospital room with you. It has allowed me to have an insanely deep faith in God, be a huge fan of counseling, and I am also hyper aware of how my experiences color how I navigate life in general. Fast forward to now.

These last two years with some of the physical diagnoses H has received, we have worked closely with our neurosurgeon to decide whether or not he would benefit from a repair.  Symptoms that didn’t totally make sense to us, but they were worsening by the month. Imaging was helpful but never gave us a full peace about one way or the other. This month we have seen our neurosurgeon’s office three times. We decided to trust our doctors gut along with ours and do one last set of imaging that is not usually standard. It was more anesthesia and risks that we had to weigh out.  We decided we would much rather do the imaging than say yes to a surgery that could not be totally necessary or guaranteed to help him. You guys. We met with him this past week for the results and I have never been so anxious in my life. Before we went in we deeply struggled with the possibility of either brain surgery or no answers at all. We didn’t sleep well, and the days leading up were full of different what-if scenarios.

::I’m letting you in on more of the background story so you too can understand the weight of our appointment this past week::

You guys.

He does not need surgery.

HE DOES NOT NEED BRAIN SURGERY!  DID YOU HEAR IT IN THE BACK?!!

And can you guess what my biggest fear was? We would leave without an answer for his healing. I am beside myself with joy that we do not have to navigate another surgery, but can we be honest? I cried silently in the hallway as we walked out in defeat. Because as huge (HUGE) of a miracle that it is that this baby boy can be spared of a procedure that is major, we also are taking home the same child who braves struggles and pain every day. To walk out with amazing news but still have to tell him we don’t know yet what can fix his pain is gut wrenching. Yes, we have some direction and yes we have a gut feeling we know what moving in that direction looks like, it’s also still unanswered.

We walked down the hallway and got onto the elevator that just so happened to have the most precious boys around my kid’ s ages with obvious physical signs of cancer. Their feeding tubes and IV poles right by their side, and the palor of their skin and hair that is lost. And one H’s age smiled the sweetest smile at me. And I couldn’t process anymore. Because it’s all too unfair, and these kids, they’re the most amazing kids in the world. I was walking out with my child without an IV pole and tubes, and we were going home. The extremes of those five minutes will never be lost on me. I will never forget that moment and I never want to either. They are the bravest kids, and that smile changed me.

So, here we are. Our shoulders lighter yet heavy. A miracle so obvious and yet we are restless. Jared said it so perfectly: it feels like a finish line and a starting line at the same time. And it does.

So we cross this finish line worn out and weary, but we did it. And we start at this new line clueless as to what lies ahead, but it’s a dang good thing we don’t know what this race will look like. Would you start a marathon knowing the pain you’d feel on mile 20? Some of you may. I keep asking Jesus that maybe, just maybe this medical world I know too well can disappear soon. The visits and dynamics and all the things that come with it can just pause. And maybe it will soon, I don’t know. But in the spirit of honesty I wish it would just stop, and I tell Jesus all the time that 30 years of this has felt like plenty. But here we are. Standing at the starting line and ready to begin again. We’ll probably walk and pace ourselves because sprinting is for show offs and people who aren’t tired! All we know is with Jesus, and authenticity, and a daily posture of surrender we will start at a new line and keep on going.

 

In My Feelings

I’m having a boyfriend fight with Facebook. You know, the kind where you know you’ll probably be back but just need “some time” to figure things out? Ok, maybe thats dramatic but its the best way to describe all the feelings I have towards social media lately. But Facebook, y’all. Did you know that most teens and twenty something aged kids have run far away from Facebook? It used to be THE place to be, and it’s slowly morphed into the opinion-ranting–momma-hangout when were bored or working place to be. Yes, we. I know good and well I fit right into that category. Our generation of ladies on the “book” are the epitome of a word class spy who can dig up information with the best of them. Don’t lie, you know you do it too. I could tell you a world of information in about ten minutes as long as the name you give me has a Facebook page. Weird, right? But we sort of love it all at the same time. Stay at home mom turned full time spy.

What turned into a social media connecting platform has quickly morphed into a false sense of relationships and information. Instead of “hey how are you?” it has turned into “oh I saw what y’all did last week, was it so much fun!!!?” creeping my kids out instantly. Its no harm no foul of course, but it’s weird right? Maybe it’s me. Maybe this is part of my boyfriend fight with Facebook. I’m sure I’ll get over it soon and be back to posting away. But for now, it’s all my feelings.

The messages, you guys. The business building hook line and sinker messages to your inboxes. The “hey friend haven’t talked to you in so long!” introduction that quickly turns into how you too can turn your life around and make some cash flow in the process. I don’t message you out of the blue about my teaching career or my glam job of cleaning the house with two kids simultaneously complaining right? I get it, Im the grumpy old lady complaining about how forward thinking Facebook has become when it relates to work from home businesses. I know its successful or people wouldn’t pursue it. Is it just me? Am I the only one who wants to reply NO WE HAVE NOT SPOKEN IN FIVE HUNDRED YEARS, I DO NOT WANT YOUR LIFE CHANGING PRODUCT, THANKS. It’s like the sign you want to hang on your front door for the solicitors that ring the doorbell three times anyways. There’s this little right hand button on a post that says “snooze for 30 days” and you can believe I do that when you post every ten minutes about how healthy you are. *presses snooze* 

K y’all. See what I mean? BOYFRIEND FIGHT.

And yes, I know. Facebook can be amazing. I totally agree. I’ve had a lot of amazing things come out of this internet community. We can build community, we can support others, we can raise awareness, ALL THE GOOD THINGS. Y’all, I even found my birth mom and aunt with Facebook’s help. I can not knock it too hard. I have some pretty cool Facebook stories. But here’s the thing….the more we flood Facebook with our miracle cures that work in three days, and how awesome our face will look if we get rid of all of our wrinkles we are doing no service to our community. My forehead and I are just fine. We are using our relationships online for business. We are mistaking internet friends with real life relationships. We are posting what we would NEVER say in real life. Not okay you guys! Calm down Karen, your post online will not change my political view.

I think we have a choice, and some of us are using our community platform to be a voice of purpose, connection, and information. Facebook is a tool. Not the end all, be all. Not your real life people who are looking in your eyes and can hug you. They are there behind a screen, yes, but it is a different community that can not replace your real life people.

So I guess there may be a point to this.

It’s my constant rant and reminder that Facebook can not replace real life people, and I think it might be doing that. It’s way easier than checking in with someone, or calling or visiting. It helps us feel like we are “in the know” when we really aren’t. Its a false sense of community. It’s a real community, and a powerful one, but it can not replace a real life person sitting in front of you. Find your people. The human ones. Check in with them, engage with them, and remember that the screen is a tool. Kind of like the way I just used it to give you all my opinions when you didn’t ask for them. I see the irony. 

Go get your Facebook on y’all, but remember you have a voice to use for positive, good, real life things. Use it! Use it with care. Remember what you post should be what you would say in person. Would your first contact with someone be about your weight loss plan? Or how they have too many blemishes and you’d recommend your spot treatment through your skin care line? I hope not. You build the relationship first. You have real life  human relationships first, and you take care of those. Then you post away, and sometimes you get snoozed for 30 days.

mypurplechair.wordpress.com

 

 

Rome Wasn’t Built in a Day

Hey friend,

Did you know that it’s okay if you have absolutely no idea what you are doing?

I don’t either! *cheers*

Every time we open a screen we see rows and rows of images of momprenuers conquering the world one photo at a time. We can assume from the perfectly curated photos they know exactly whats up, and life is super shiny. Wrong!

The secret is out – none of us really know what we are doing – we just do it!

Remind yourself this week that the screen is a one second snapshot into the world of someone that you don’t personally know. If you did, you would know that it is their highlight reel.

It is okay if you don’t conquer the world this week. It’s okay if you’re not even sure what your family is having for dinner tonight (me, me!).

What is true is that we are all moving forwards or backwards – so we may as well take little baby steps in the right direction each day. But, hear me out: baby steps.

Make one goal and do it! Know what my Monday goal was? To make some medical phone calls and change some appointments around. And I did it! Nothing fancy, but it sure does feel good to cross something off of the list.

Rome wasn’t built in a day, and your life dream will not happen within 24 hours.

Behind those shiny filtered photos are piles of laundry, kids who are complaining, and a momma who is working hard and doing her best for the day, just like you.

Take it easy on yourself. Choose grace over comparison.

Take it easy on yourself. Choose grace over comparison.

Best Parent Ever

I won an award today. And truthfully, it made my entire week. Maybe even year. 

I woke up this morning in a special kind of mood. One where your husband can already tell its time to go to work before my head spins three more times. It is spring break this week and my children are #blessed to be dressed and fed before ten. The grocery store has not seen my face in a while, and my refrigerator will show you that. When I woke up today I was mad that I didn’t plan well, or at all. I had no idea what I was going to make for breakfast, and I was pretty sure it was going to be sugar and extra carbs (all the things that made the invisible bad parent list).

Once my two precious children woke up and demanded asked politely for their breakfast, I made the super spontaneous desperate decision to go to our local Mexican food restaurant that serves our favorite breakfast. I was so hard on myself in my thoughts and knew for sure this lack of planning all week put me in the worst mom category. No beautiful breakfast spread? No protein and fruit to balance the day? I was failing already and it wasn’t even lunch time yet.

When we go to our tiny town restaurant we usually bring card games so that my boys will not have another excuse to run round and act like they don’t know how to sit down. We started our drink order and our game of UNO and suddenly my mom dilemma of spring break breakfast disappeared. We actually had fun! I sipped on coffee, and the two boys had the most intense and hysterical game of UNO I have seen in a while. We played, and we ate.

After a while this saint of an older man walked by our table as he was going to pay for his food. He stopped for a minute, introduced himself to my boys and I, and asked if they were brothers. Yep! Sure are! He began to use the most encouraging voice and told them how he would never know that because they were the most well behaved, polite boys. Wait for it though…he finished and said “that doesn’t just happen you know. That is thanks to this lady right here and her hard work!”. ME! ME! He was talking about me you guys! He then went on to pay for his meal and circled back around to our table, and in the most sincere voice told me “you know, if there was an award for the best parent ever, you would have that!”. I told him I would gladly accept, and then of course had to include that I for sure do not earn that award each day (because parenting).

Award

Can we all see the irony in this? I literally spent the first two hours of my day mentally beating myself up for what I had not accomplished yet, or what I thought I should have together. Because of BREAKFAST FOOD!

And there I sat in the restaurant doing the best I could do in the moment (which was survive) and this sweet man gave my heart exactly what it needed.

He didn’t see that as we walked in I had turned around and told the boys we’d go back to the car if they continued to act like they were. He didn’t hear that prayer I said in my head where I’m hoping my kids will eat some of their food, and get along so I can drink a cup of coffee at the restaurant. He saw right down deep into my heart and told me what every momma needs to hear today.

There is no such thing as perfect you guys, so can we give ourselves some stinkin’ credit?

Maybe you need the best parent award ever today too. And tomorrow, and the next day.

Actually, what we need is an award AND perspective.

We are all just doing our best, and our best looks a little different each day.

So, congratulations y’all.

I think you deserve the best parent award today also.

 

Not Your Quick Fix

We just want an answer. A positive. A point-blank-right-in-front-of-your-eyes result that will tell us what in the world is going on.

There is a security in knowing. An emotional anchor that comes with having a tangible problem to fix, and a way to fix it. It gives us control, confidence, and the knowledge that soon our problem won’t exist anymore. Lets be honest, we like answers and we love results. It may not help that we live in a world that thrives on fix-it formulas and quick solutions. We all like something you can throw your money at that is guaranteed to improve your quality of life. Take a quick scroll down your social media feed and you will see that everyone has an answer or a product for your unfixable problems.

This is different.

This has been different from the start.

And every day, this feels like the unfixable.

I can’t think of the words to describe what it feels like when your child doesn’t feel well, and I still can not find them. I only have cuss words to describe the feeling of no answers, no direction, and a million good educated guesses. That is half of why typing this post has taken me weeks to try out.

I am all about the motivational “we can do this” and “we’ll get through this” pick me up speech but this story has felt like the opposite, and that is okay. This part of our story feels long and hard, and almost like it may not end. It reminds me how out of control we truly are. This has been real-life, messy, and straight uphill.

And you know how we do this each day?

Jesus.

Thats it.

I don’t know how people do it otherwise.

I know that this isn’t how life was designed to be. I know that we are never guaranteed a quick fix. I know that kids will suffer, and none of it feels right or makes any sense. I know that just because we love Jesus doesn’t ever guarantee our world will be without unfixable problems.

I know that by watching a seven year old navigate two years of ever changing pain, your heart would be changed like ours is. If you saw his smile, you’d see that Jesus is bigger than any of this. You would see Jesus in the way he plays sports, and the way he loves being with our family while having a movie party. You would see Jesus every single time he walks into his school doors. You would see Jesus in my ten year old, too. His smile, his trust, his ability to love anyone and everyone. You would see it through the way he handles the unknown right along side of his brother. 

We still have no answers, and every specialist and lab test that we have prayed over and waited months on have shown us nothing new. Nothing different than what we already know. And through it all, we are so purely exhausted that the only energy we have is to see Jesus in it each day. Thats all we’ve got y’all. We look for Jesus every single second of each day. And the next, and again the next.

We pray with tired, out-loud, for real prayers. We pray one second help me prayers. We read when our eyes are teary, and distracted. We sit in the not knowing. We lean into this  reluctantly and we have no other choice but to lean in. We lean into what we don’t know. We keep praying our tired out loud prayers, and we don’t quit.

I hope you do the same, friend. I hope you stay in the game when you want to jump out. I hope you lean into the messy, and you learn to stop being so afraid of the hard things too. And in the hard things with no answers and quick fix solutions, I hope you look for Jesus.

I hope you see this hot-mess-train-ride we call our story and you see Jesus, because we don’t have anything else for you other than that. 

Ihopeyou

Letting Go

93D0ECCE-F772-44E1-B98D-84555C12F0ABI am not a quitter.

I achieve to a default. I power through tough situations when I shouldn’t always power through. I know what it means to dig your heels in, work hard, and push through.

This week, I quit.

I quit pushing when I shouldn’t. I quit trying to expand my capacity when there wasn’t any more to expand. I learned that the strongest thing you can ever do for yourself and other people around you is to know when it is time to step away. Turns out, it takes more strength to walk away than it does to stay sometimes.

Our world keeps spinning whether I am working 11 hour days or not.

See, teaching means a lot of things. Teaching means hours of prep, and hours of teaching. It means your heart goes into twenty other kids as well as the two I already have. Every thought goes to how you can improve, reach that one child, or change a lesson so that it is more effective. It goes into meetings and conferences and trainings. It goes into more than you will ever know. And this year, teaching turned into something I had to let go of. You hear it all of the time, that teaching is part of who you are. And its true, it is.

I am letting go of a part of who I am, whether its for a season or not. I let go of it.

Survival mode only works for so long. When one is at appointments and the other is working. When were not sure what tomorrow looks like, and were on a constant cycle of who needs to take off of work and when. It happens, and many families like ours do not have the option of stepping back and widening their capacity. I am so thankful that we do.

And in this season, I had to learn that stepping away from something I love, to invest in something I love more is the hardest and the strongest thing I could do.

Am I sad? Yes. Am I confident in my decision? Absolutely.

I will never look back and regret that I trusted my heart, and invested more into my kids and my family than I did into lessons and meetings.

So in this season, strong looks a lot different than I expected.

Strong doesn’t look like a game face, or powering through.

Strong looks like letting go.

Our New Story

Its been a whole year since I have even visited this blog site, and rightfully so! I figured this would be the best place to update you on our sweet boy and what life has looked like for us lately.

Some of you who have walked through the past few years with us have known that our sweet little has had his fair share of medical concerns.

Im not quite sure how to quickly summarize the first half, so I’ll do my best! Right before 2017 began he was unconscious and taken to the ER. We found out his blood sugar was 29, and he transferred to PICU at Dell until he could stabilize. To this day we are still unsure of what caused this random event and with two endo consults, we continue to make sure he has a good snack before bed, and we pray a lot 🙂 The feeling of that day has never left us, and there is a constant reminder that if we don’t watch what he’s eating carefully, it could easily trigger another hypoglycemic episode.

From there, he had multiple stays with continued stomach pain. A kidney disorder was detected from GI imaging, and this required a stent, a major surgery, another stent, and removal. I can’t even tell you how many times we were in and out of Dell in those few months, but we know the anesthesiologists and play therapists by name now 🙂 The kidney surgery recovery took months, and sweet boy had to endure a lot of pain and scary things. Unfortunately, this could not solve his continued stomach pain that was continuing to increase.

More trips to GI (thats the stomach dr), consults and new symptoms continued to lead us down a slow path of eliminating what could be contributing to these symptoms. And if you are thinking of why, we’ve probably already thought of it and crossed it off of our list. This is new information for some of you, but not new information in our house.

In the fall with other symptoms our neurologist wanted to go ahead and complete a brain MRI. This boy did just that without sedation and did amazing. When I say he is my hero, I kid you not..he really is. The brain MRI revealed to us a Chiari 1. Simply put, his brain is too big for his head. I knew he was too smart! chiari1.jpg

The bottom of his brain protrudes into his spinal canal causing pressure. Pressure on your spinal canal can be associated with multiple symptoms. From there, you are referred to a neurosurgeon for more eval. Some kids with Chiari 1 have no symptoms, but they require spinal imaging to rule out other things that can come along with Chiari. In April we spent the day at Dell and under sedation Hudson had 2 hours of images taken. We called for results and they were unable to give them to us over the phone, so we waited, for what felt like forever – our next appointment wasn’t until May. Turns out when there are only two pediatric neurosurgeons in Austin it takes a while to get seen 🙂

In May we were able to see his brain scans and spinal scans up close and personal. Hudson learned all about the bones in his back, his neck, and how awesome his brain is! It was absolutely amazing to see. Our doctor is so patient, so informative, and is so wise. I would never normally describe many of our doctors this way, but this one, he’s different. He has a peace, knowledge, and honesty about him that helps us know that he’s our one.

Hudson’s spinal images showed us another piece to this huge, 100000 piece puzzle of ours. He has a syrinx, a fluid filled blockage in his spinal cord. It can cause a number of concerns and issues, and we are so thankful we found this sooner than later.

When you see these two things on paper, the next step is surgery. Surgery to fix the brain, or surgery to fix the spinal blockage. Either surgery is not an easy thing. In Hudsons case, we are moving conservatively. He is happy, and mobile. His motor skills are fully in tact and for that we are so thankful. With our doctor’s intuition and ours as well, we are watching moving forward a month at a time. Hudsons GI issues continue to worsen and our sweet boy has been in more pain than you’d ever know. In his own words “I don’t even know what it would feel like if my belly didn’t hurt anymore”.

From there we had to complete a swallow study. Those muscles are effected by this disorder, so we wanted to evaluate them first. This study revealed his esophagus is not doing its best job. No wonder his stomach hurts! Because this is a step above our GI, he has referred us to one of the top GI’s in the nation who specializes in this very specific motility disorder. In August we will travel to Houston to meet with him and we are praying that this may be a new direction in helping Hudson not live in daily pain.

We are so thankful that Hudson is so great at telling us what is going on with his body. Over the summer we have already had to navigate some new things, and scary things. With that, we mentally and physically take it one day at a time. What this looks like for us each day is still letting him be a kid. He is ALL boy and our surgeon and our family have already agreed that our goal is to make sure he lives like a kid. This means I may hold my breath when he wrestles with his brother, or wants to play sports, but we do it and we trust. We haven’t told him what he can’t do, and we will slowly navigate this world as we learn more. Roller coasters are a no-go, tackle football is off, and other jolting/hard hitting/head hitting things are a no.

Its taken us a while to decide what to share, and when. We are slowly still absorbing this as we listen to him and we keep moving on with our normal day. We are sad for him, and for our family, as that deep relief we so badly want for him hasn’t come yet. He still hurts, he can’t ride in a car for very long without getting sick, and it changes what our days look like sometimes. When you see him, you would have absolutely no idea. He is that happy, and that amazing.

Here is what we need from you. Understanding, prayers, and patience. We are learning right along side of him. We are listening to his body, and what he tells us and shows us, and we are still working really hard to just have our normal summer days.

Prayers as we travel in a few weeks to Colorado. This momma is extremely nervous about the altitude and being so far away from Dell. We have never traveled further than 4 hours with him. The car is miserable for him, so we are flying most of the way and driving for the other 3 hours. We have been invited to an amazing camp and are counting down until we can enjoy some time together away from the noise.

Prayers that we make the right decisions. That we trust what we know, and we wait when we need to wait. Y’all. We are not robots, and some days it feels like our normal and other days it feels extra heavy. We are trusting a lot, talking to Jesus non stop, and relying on sharing this information with our friends so that you can join us.

What we also need: people who can just sit in this with us. Not any new answers, no new studies or healthy plans that we may not have considered – because I promise, we have. When a momma sees her baby hurt, nothing is off limits. We just need people to sit in this with us. And if you have a relative who has navigated this Chiari and syrinx world before, we would LOVE to connect with them. Its a rare thing, and can easily be isolating.

And prayers for our big one, he sees his brother hurt and he sees us trying our best to find an answer when there may not be one in sight. We are learning how to trust so much, but that doesn’t come easily for a 9 year old either.

So thank you, for reading this novel, for praying for our sweet boys like you do, and for sitting in this new part of our story with us.