To the Mom at Therapy for the First Time

I saw you walk in this morning. Carrying your sweet newborn baby swaddled in his infant carrier. I saw the brave look on your face as you approached the front desk. You were early for your appointment. Your paperwork all filled out. Insurance cards in check. You were ready for this. The older woman with you who I can only assume was your own mother was there with you for support. I saw you scan the room, tentatively gauging your place in this therapy center. I watched as you glanced our way and gave Ella a timid grin.

And honestly? I didn't think much of it. Sitting in waiting rooms with kids of various disabilities has become the norm to me. I don't bat an eye at seeing kids in wheelchairs, walkers, varying degrees of mental and physical disabilities. I'm used to it.

But you weren't.

After I loaded my kids up in the car and we started to drive away I glanced over at the doors to the therapy center and saw you rushing out. I saw you wiping tears from your face, struggling to breathe, desperately willing your emotions to keep in check. All the while failing while the tears ultimately won out and came streaming down your face, the walls of bravery crushing in around you.

I sat frozen. It felt like all the oxygen was sucked from my vehicle. And I was instantly transported back in time to 8 years ago when I was in the same place.

I don't know your story. I don't know your child's disability. Maybe you don't yet either. I don't know anything about you. Except in that moment I was you. And I knew everything about you.

I know how you're feeling. I know how dark it is right now. How the light seems so far out of reach. I know you're wondering why. What happened? What did you do to deserve this? I know this seems so unfair. It IS unfair. I know how much strength it took just to get to that building today.

You dreamed of spending hours snuggling him in his perfectly decorated nursery, not hours in hospital waiting rooms. You wanted to show him off to all your friends not get him prepped for another surgery. You planned to nurse him, but now you're feeding him through a pump. You dreamed of picking out t-ball uniforms, not medically handicapped strollers. You dreamed so many dreams about his future. And now they're gone.

I know how much you anticipated yet dreaded this day. How you agonized and planned and the effort it took. I know you would do absolutely anything to help your child, yet at the same time wishing with all your heart that it didn't have to be here. Anything but this.

I had to keep driving, yet I couldn't get you out of my mind. At the next intersection I turned my car around, promising that if you were still outside I would go talk to you, give you a hug, reassure you that it will be ok. That it's not that bad. That yes, it's scary, and it's not what you dreamed of when that sweet baby was kicking you from the inside, but there is light. So much light.

But you weren't there. You had already gone back inside to face the fears that threatened to destroy you. Because you are brave. And your child, this sweet baby that you're here for, will make you stronger than you ever knew you could be. This time will pass. And one day you'll wake up and hear the birds singing and feel the sunshine and realize you made it. You made it past that dark place. It's not all clear and it doesn't all make sense, but you will be a changed person, a stronger woman, and you will finally know it's going to be ok.

If you take your family on vacation..

It was the best of times.. it was the worst of times...

It was the not-so-annual-actually-we've-never-taken-our-family-on-vacation-without-it-being-a-CdLS-Conference-with-grandparents-there-to-help 

Watkins Family Vacation.

It ranged from the highest of highs (and not just because we were in Colorado.. ba dum chhh!) 

to the lowest of lows.. and quite possibly everything in between. 

It was a bit like the book "If You Give A Mouse A Cookie."

"If You Take Your Family On Vacation"

by: The Watkins

If you take your family on vacation, you'll decide at the last minute to pull the kids out of bed in the middle of the night to get an early start on the drive, in anticipation that they will sleep most the way there.. they probably won't. 

They'll just decide to start their day at 1 am, so excited that they think they can see your campsite in the mountains from 500 miles away. 

Thinking of camping in the mountains will remind you to order all the groceries you need for the entire week while on your drive there so they're ready for you to just pick up after being in the car for 11 hours, 

making you feel like the smartest human on Earth. 

Until you realize you bought 3 bags of mini marshmallows instead of regular for roasting smores.

Thinking of smores on the fire will remind you of how hot it is. So of course on the most sweltering 95 degree day, despite having already fixed your air conditioner in your car (twice) before leaving, 

it will break again. 

While trying to schedule an appointment to get the A/C looked at, chances are it will be a holiday so nothing will be open. 

Happy Birthday 'Merica

While you're remembering that nothing is open, you'll be in a hurry so obviously you'll manage to stop at the one gas station in town that only has a single outdoor stall and it will take a full 30 minutes to get your crew through the line.

You'll also spend a too-large majority of your trip sweating in 100 degree port-a-potties 

while your children's colons decide to work overtime. 

Or not at all. 

While spending so much time at the bathroom you'll be reminded of the important lesson your oldest learned about why 6 dried apricots is the serving size and not an entire bag..

And while you're still thinking about the bathroom because with 5 kids SO much of your day revolves around that, you'll remember that even though your youngest has been night potty trained for a year and never has accidents 

he'll wet through his sleeping bag on the very first night you're camping.

Having a pee-soaked sleeping bag will remind you that you geniusly picked the campsite with a laundromat on purpose, so you'll try to go wash his sleeping bag. 

And find out that the laundromat is closed for repair.

Having dirty clothes and nowhere to wash them will remind you of when that same child randomly threw up all over the car after just turning onto the expressway and almost to Pike's Peak 

with no wipes, extra clothes, or place to turn around. 

Cleaning up his puke with a few random Kleenex's you found on the floor will remind you that even though you're coming off the healthiest year on record for your family with absolutely zero trips to urgent care or stomach bugs of any kind, somehow Ella's eye is mattering and stuck shut every morning, looking like some kind of the pink-eye type infection, your eye is starting to itch, and the child who hasn't had strep throat since he had his tonsils removed nearly 3 years ago is complaining of a sore throat and stomach ache.

Driving on the expressway and up Pike's Peak will remind you that you are terrified of traffic that is more than 2 lanes and/or 10 total cars on the road, and also of hanging off the side of a 14,000 foot mountain as your spouse is easily distracted by pretty mountain views while teetering mere inches from a 1000 foot plummet so chances are you'll get in a fight. Or two. While small voices from the backseat echo "I KNOW how to DRIVE." *giggle giggle*

All those giggles will remind you of the pack of kids that run wild at the park at your campsite with very little to no adult supervision every night. And if you to start to feel sorry for yourself that all the other adults get to relax at their campsite but you have to sit at the park and play ice cream store for the 1,000,000 time because you can't leave your developmentally delayed child alone, chances are you'll meet another little girl named Ella who sees nothing different about yours and plays endlessly without a care in the world, blissfully relieving you of your make-believe ice cream duties.

While playing with the other Ella and her sister, your Ella will suddenly have a potty emergency so as you scoop her up to run to the bathroom because you don't want her to pee her pants in front of her new friends, your phone that you've had back for a mere 3 days, that they MADE you spend $130 to fix a tiny crack in the corner of the screen in order for them to fix their own internal error, will fall out of your pocket onto a sharp rock and crack into oblivion. 

Seeing that pointy rock will remind you of the comment your husband made about 

"those rocks being so sharp they could pop your tire." 

And chances are the next morning you will wake up with a flat tire.

Seeing the flat tire will remind you to get your car's AC in to get looked at. So you'll make an appointment and time it perfectly to be 40 minutes before your hair appt to get photos done, with assurance you can catch a shuttle and be there in time. You will wait in the lounge for 40 minutes only to be told the shuttle is still 30 minutes away and you will miss your appointment. 

 But you’ll probably be able to reschedule with another gal. And when she’s finished making you beautiful you will call for your shuttle and proceed to wait 1 1/2 hours for them to show up and while you’re waiting your phone battery will die. 

So you’ll ask the lady at the counter if anyone has a charger you can borrow and she informs you that every single stylist in the building uses Android and not Apple. So you’ll have to go next door to buy a new charger pack. Which won’t work. Of course. So you’ll walk back to return it and buy a new one. Only to find out the outlet you’re using doesn’t work. And then to be told by the gal who styled your hair that she did, indeed, have an iPhone AND a charger. 

You’ll finally get your phone to charge and call the shuttle driver for the 4th time and when he actually does show up you’ll be pretty positive he has been taking full advantage of filling his tanks at Colorado's finest Gas & Grass.

Which will remind you of some of the serious crazy directions Siri has given you on this trip and wonder if she's been doing the same..

Which will also remind you that even though you hardly ever go over your phone data for the month, this month you did before even leaving home so your internet usage will sloooooooow to snail's pace, adding an extra element of difficultly to depend on Siri for directions in the first place. 

Siri's directions will manage to guide you to the beautiful location you chose to take your family photos though. So if you've been talking about swapping photo sessions with your talented cousin photographer for 3 years and finally drive 570 miles to make it happen, chances are your youngest will scream literally the entire time because of the horrors of wearing overalls, and after only a little time the heavens will open up pouring rain and hailing on an area that is in a drought every year. Except this year. 

But you'll make the best of the situation and spend the evening with your cousins you haven't seen in 5 years playing Whirleyball (a mix of bumper cars/lacrosse/basketball)

and manage to even win a bowling game in your sleep (waking up every time it's your turn) because it's waaaaaay past your bedtime. 

And the next few days that you spend with your family, watching your kids play with their second cousins that they've met only once, twice or not at all, depending on their ages, will be some of your favorite memories of the whole trip, reminding you that the simple things in life really are the best.

When you tell the kids it's time to leave they'll cry and complain and deny that they're tired at all. 

But they'll do SO good on the 10 hour drive home and you'll barely hear a peep from them the entire trip. Which could also be attributed to the fact that you had to drive 85 mph down the interstate with the windows down because it's 90 degrees out and they couldn't get your AC fixed after the entire fiasco and the wind muffled basically everything, actually making it a curse and blessing in disguise. 

But if you have absolutely zero expectations with relatively zero preconceived plans, chances are in a few months.. or possibly years.... and with a little luck from a mild case of amnesia, you’ll end up having the best memories ever.

Ella's Updates

I realized I haven't given much of an update since Ella's surgery and wanted to fill everyone in on what's going on around here!

Ella's 2nd surgery to repair her VPI went great. A big winter storm was coming in the night before she was scheduled which threw a big wrench in our plans (especially since my husband started a new job recently which includes him driving the snowplow, making it a tad more difficult to get away during big snow storms), and we ended up spending the night in the Ronald McDonald house before surgery. This was my first experience with the RMD house. Of course I've heard of them, donated some pop tabs here and there, but I was completely blown away by the hospitality and care they provided. I will admit I had been feeling a little sorry for myself prior to this. It didn't seem fair that Ella had to go through ANOTHER surgery. It didn't seem fair that WE had to go through another recovery. I was still traumatized by the first and honestly didn't know how we were going to get through the 2nd. I was in a bit of a "poor me" funk. After getting a tour of the house our first interaction was with a family whose child had a rare cancer and was there for his every-other-month chemo injection into his spinal cord. On top of that there was a newspaper article about that same family taped to the bulletin board about his Make-A-Wish where he could have chosen to do practically anything, meet anyone, travel anywhere, and the only thing we wanted was to have a pizza party for his entire school. He had missed so much school due to his treatments all he wanted was to be a "normal" kid eating pizza with his friends. Humble. Pie.

We also had a brief conversation with a man who was there with his son receiving therapy. We didn't talk to him long and I don't remember the whole story now, but there was something about him being up in Minneapolis for therapy for the past few months and now was moved down here and would need to be here for years. My attitude straightened up pretty quickly after that. The RMD house had everything you could think of needing. There were play rooms for the kids, movies, pool tables, meals and snacks they provided.. I was impressed. Between that and having mom and dad all to herself, Ella was living her best life. Until the next morning.. We woke up to a freshly fallen blanket of snow and even though I wasn't feeling quite so sorry for myself anymore, it's still beyond nerve wracking to send your child into surgery. I had so many emotions swirling and photography is often my way of dealing with all those big feelings so I had JJ snap a few photos before we left.

The surgery itself went great. We spent one night in the hospital and while she had a more difficult time coming out of the anesthesia (probably because she was under for longer - over an hour) the recovery was SOOOO much easier than the tonsillectomy. Even with getting Influenza one week post opp.. it was still much better.

We noticed a difference in her voice immediately. It is much louder, clearer and even has an entirely different tone to it. We had parent teacher conferences shortly after surgery and the big news around school was that one day at recess one of her friends dropped her glasses and Ella yelled out "MYLEE!!! You dropped your glasses!!!" And EVERYONE heard AND understood her. Apparently the entire class ran into the school telling their teacher about it, and teachers who were all the way across the playground heard her as well. So that was exciting!! I've also had many other people tell me they think her voice is much clearer and they can understand her better.

That being said, I can't say I've noticed a HUGE difference in her ability to say certain consonants or syllables. YET. My entire hope for this surgery was not that it would be an immediately "fix" but would give her the tools to be able to one day help with her speech, with the help of additional therapy.

She had some check ups the other week including cardiology (her heart looked good still) and a hearing test. Again. I was so excited for this test since she had her old ear tube removed in the first surgery, and ears cleaned and new tubes inserted in the 2nd surgery. I hoped we would get a good test result and FINALLY be able to decide if she needs hearing aids once and for all. Unfortunately when we got there her ears were full of wax again and she couldn't get a good reading. So our ENT squeezed us in on his lunch break and we had to clean out her ears. (NOT a fun process if you've never been through it with a child who is already a little traumatized by the ENT office from prior procedures.) After we finished her echocardiogram, we squeezed in another hearing test (it was a looooong day) and from there we could see that she still had fluid, but it was behind her ear tube. So the tubes are supposed to keep fluid out of her ears but I guess fluid can still pool behind the tube. (?) Our ENT thought it could have been remaining from her influenza 2 months ago so suggested we do ear drops and next time we come back we'll try again. I HOPE that we'll be able to get a clear answer either way. It's been over a year that we've been trying to get a good hearing test and even though I don't necessarily want her to have to get hearing aids, I know if it helps her it will be the best and I'm anxious to find out either way and finally move ahead.

In addition to all these appointments, Ella has also been busy at school lately with projects for her class. One day she was the "teacher" and read clues to her friends for them to guess the correct answer.

This week she taught them how to make bunny cars.

I love how accepted she is and how her curriculum can be adapted to include her AND her class which I truly believe helps everyone.

AND we're getting ready for our 6th Annual Ella's Run!! I know I've posted about this before and I will admit again that hosting this fundraiser is not my favorite thing to do. Not because it's that much work, and especially not because I've been so humbled and amazed and blessed by everyone's support. I just hate having to ask for help. To put myself in a position where I can't do it all by myself. I have a certain child who is my mini me in this regard and it's interesting to watch him.. he NEVER needs help with anything. He can do it himself thank you very much and sulks if there's something he's not good at and does require help. I'm learning a lot about myself by watching him..

I was having a conversation with a friend recently completely unrelated to this but we were talking about a family who could have applied for government benefits but was too prideful to accept any assistance. My friend stated "If I knew we would qualify I would absolutely swallow my pride if I knew it would help my kid." And that got me thinking. That is exactly why I do Ella's Run every year. It takes a lot for me to swallow my pride and I cringe on the inside the entire time, but I KNOW it is benefitting my daughter, so I will move mountains to make that happen. I am 100% certain that if we had not gone to the CdLS Conference last year we would have never even heard of VPI, not to mention getting it diagnosed. Our speech therapist didn't think she had it and even our ENT was hesitant to test her since he didn't hear it clearly as well. If it wasn't for us being there, meeting with that particular Behavior Therapist, me having that knowledge and pushing to get it tested we would NOT have found out. I've thought many times that maybe we're in a good place and we don't need to go to these Conferences anymore, but this year has proved to me again that it IS worth it and there are ALWAYS things we will need to learn.

So here we are! The 6th Annual Ella's Run will be May 11 at 9am so contact me if anyone wants to get signed up or order a tshirt! Our friends, along with sponsors from Thrivent Financial, have also donated a 50" TV to raffle off so contact me if you want to buy tickets for that as well. We appreciate everyone's support SO much!!

The Doll

This past weekend we celebrated Christmas with a family water park adventure and sprinkled in some late birthday parties as well. For one of her presents Ella received a doll. A pink ballerina doll with a lacy tulle skirt, long dangley dancer legs, and a perfect bun atop her head. She loved it. She loves dolls and babies in general and this seemed like a bit more of a "big girl" doll, not a baby. I loved watching her hold it and twirl around, beaming with delight at her new treasure. I loved seeing her cradle it gently, compare their matching buns. I loved seeing the joy radiate on her face.

For 5 minutes.

See, after the party we were heading out of town when we decided to stop at the grocery store to pick up a few things. While I ran in, husband was to stay in the parking lot with the kids and rearrange the car seat order because no matter how many combinations we try NO ONE is EVER happy with their assigned seating chart and it is inevitable that someone will take offense by the horror of having to sit by a certain person, in a certain row, or next to a certain window and SWAT team level negotiations have to be made in order to get from point A to point B before we switch it around again. I rushed back to the car with my snap peas and shredded cheese, sure of the ensuing drama that was about to unfold, only to find them all snuggled in, some already half asleep, their bellies recently filled with pizza after a full day of swimming. Crisis averted. I climbed into my seat, clicked my seatbelt, turned my head, and that's when I saw it. The doll. The beautiful pink ballerina doll with sparkles in her skirt and perfection in her eyes. She was laying next to my seat. Splattered head to toe with mud.. no, not even mud. Nasty black road grime from the grocery store parking lot.

"What happened??" I half asked, half screeched, trying to stay calm as the words gurgled from my mouth.

"Happened to what?" Husband replied as he casually glanced my way. "Oh the doll? I don't know," as his eyes lazily turned back to the road. I continued to stare at the doll, horrified. My eyes bulged, heart rate increased. My breathing grew shallow. The beautiful, perfect pink doll was no more. It was ruined. Scarred. Maimed beyond recognition.

"What HAPPENED to the doll??" I screeched again, louder this time, with more emphasis so he would know this was not merely a casual question. "Did you drop it?" I asked accusingly. "How did it get muddy? Why was it even outside in the first place? How could you be so CARELESS??"

Husband looked at me like I was crazy. Understandably so. It was, afterall, just a doll. At least that's what he told me. But I couldn't hear him. In that moment the "just a doll" meant so much more. I don't know why or how but in those 5 blissful non tainted, stain-free minutes of owning her, that doll came to mean something to me. She took on a life of her own and somehow encapsulated everything it meant to be a mother and have a daughter. Beautiful and pink and sparkly and without blemish. It was a normal doll for a normal girl who adored it.

I love my daughter. SO much. But sometimes I still feel like I got cheated out of a deal. An under the table deal I wasn't even informed I was making yet somehow slipped through my fingers while everyone else around me raked in their spoils without hesitation. I don't get to enjoy all the things I dreamed of doing with a daughter. I don't, and won't, get to enjoy all the moments I thought we would share. I might not ever know what it's like to get her ready for her first date. Or try on wedding dresses. Or have slumber parties with a gaggle of giggling girls. I likely won't watch her play basketball with her friends or stand up in front of the school for the spelling bee. I'm not sure if she'll play in the band or perform in any school plays. There's so much of her childhood that doesn't seem fair or right or normal.

And then I remembered. The doll. The brand new beautiful doll with blond pig tails and long dangley legs I got when I was a young girl. The doll I clutched tightly in the Bomgaars parking lot when my mom told me I should leave her in the pick up because it was raining. The doll I refused to let go of. The doll I promised I would keep clean. The doll I swore I wouldn't drop. The doll I promptly plopped in a mud puddle the second I jumped out of the old Dodge truck. The doll I weeped for so many years ago because she was ruined, scarred, maimed beyond recognition. (some dramatics don't change with age..)

And that's when I realized. I was mourning this doll for our loss of a "normal" childhood, while the entire time, dolls getting muddy in parking lots IS a part of a "normal" childhood. Childhood, even having daughters, is not about pristine toys tucked away on a shelf to look pretty. They're about making messes and making mistakes and getting back up, cleaning ourselves off, and trying again. And again and again. (maybe this applies to marriage too??)

So just like my own mother did 30 years ago, I brought the doll home and tenderly scrubbed her face until she was maimed beyond recognition no more. .  She wasn't stained. Or scarred. She does still have a slight lingering spray and wash scent but I'm sure that too will fade with time.

Having Ella is not what I thought having a daughter would be like. But then again.. very little about having my typical boys was what I imagined it would be either. Having kids in general, being a mother, it doesn't play out daily like it did in my dreams. Being a wife, raising a family.. not always what I thought.

But that doesn't mean it's not still good.

There's a possibility I might be a little more on edge this week because tomorrow Ella goes in for her second surgery to repair her VPI. Tomorrow morning around 11:30-12 her doctor will be taking a flap of tissue from the back of the throat (pharyngeal wall) and attaching it to the soft palate (velum). This flap forms a “bridge” to close the gap between the back of the throat and the soft palate. Two openings (called lateral ports) are left on each side of the flap. The openings allow her to breathe normally through the nose. (www.cincinnatichildrens.org/vpi)

The recovery should be similar to the tonsillectomy and since this isn't our first go around I know better what to expect and lets just say.. sometimes ignorance is bliss. Some people like to know all the details, but for me, NOT knowing is so much better than knowing. Her recovery from the tonsillectomy took so much longer than I thought it would. I expected the worst and in some regards it wasn't as bad as I thought it would be, and in some aspects it was so. much. harder. I am dreading this surgery. And the ensuing recovery. I'm successfully avoiding thinking about it by not packing a single thing so far for a (at least) 2 night stay in Sioux Falls even though we have to leave in a few hours to beat the winter storm, as well as having a play date this morning and getting groceries.. If you have some prayers to spare we would appreciate them! For safe travels in the storm, for a safe surgery, a successful repair, a non-traumatic stay in the PICU, a short(er) recovery, and mostly strength and patience for mom and dad!! And also that these surgeries will help improve her quality of life and speech dramatically! I am ready to be past these next few weeks and onto a better future!

VPI Clinic

Today was Ella's VPI (Velopharyngeal Insufficiency) clinic with the ENT in Sioux Falls.

Velopharyngeal Insufficiency, as best as I can understand it, is a condition where the child has trouble moving or closing the soft palate during speech, causing air to leak into the nasal passage during speech production. Basically, as you speak, your palate moves to the back of your throat and needs to close all the way in order to create the suction needed to make certain sounds. Someone with an insufficiency wouldn't be able to close that gap, causing air leakage into the nasal cavity and consequently hypernasality and speech difficulties. 

To test for this we first had an evaluation with a speech pathologist who met with Ella and listened to her speech, rating each letter she pronounced and determining if what she heard gave her reason to move further with the testing. It did. The next step was a video nasopharyngeal endoscopy where the ENT inserted a scope into Ella's nose that had a camera on the end. We were able to watch her palate on a tv screen and see if it was closing the way it should during speech. It wasn't. 

And so it was determined that Ella does indeed have Velopharyngeal Insufficiency.

There are 2 different treatments of VPI. If the gap is small they can do an injection which would swell the pharyngeal flap in the back of the throat, helping to be able to block off the flow of air during speech. If it's a large gap a more extensive surgery is needed to move tissue into the pharyngeal flap and create a wall of sorts that would assist in decreasing airflow. Ella has the more severe type. 

One of the concerns with this surgery is building up the wall too much, thereby increasing the risk of sleep apnea since she would still need to be able to breathe out of her nose while asleep. In order to decrease this risk a tonsillectomy is required before the VPI surgery. 

So as of right now our plan is this.. Tonsillectomy surgery is scheduled for December 12. At that time the ENT will remove the tonsils and also the tube in her left ear. He will clean out the impacted wax and assess if there is middle ear fluid in her right ear. If there is, he will insert a new set of tubes at that time. Then in February she will go back for the VPI surgery to build up the wall on the pharyngeal flap. She will need to stay a night at the Children's Hospital to monitor her breathing during sleep and make sure the wall isn't too large. After that we will do another hearing test and hopefully be able to determine if hearing aids are necessary. 

I have so many emotions about this diagnosis.

First of all...

SHOCK.
I really wasn't prepared for this. I knew there was a chance she could have VPI, but the only thought I had given it was IF she did have it, it would most definitely be the less severe one, requiring a simple injection which she would need to be sedated for, but would work out well since we need to get that tube out of her left ear anyways.. If there was a teensy thought in my brain that she would need the more extensive surgery, I had NO IDEA she would have to have her tonsils removed in a separate surgery only weeks earlier. That was a bit of a blow..

RELIEF.
Relief that maybe we've found an answer. A reason as to why her speech isn't progressing the way we want it to. As much as we don't want to have to put her through surgeries, it's nice to have something tangible that can be "fixed" instead of the constant "well... we don't really know why" we too often get.

FEAR.
Obviously. Even though these aren't particularly risky surgeries, any surgery comes with a chance of complications and that is only multiplied when you throw in genetic syndromes and kids who like to defy every rule in the book. I've also learned that any sickness with Ella is 10x worse than the other kids and I remember the last tonsillectomy recovery to be pretty darn awful so that's going to be a fun week. Or two. In addition, getting Ella to drink enough water on a regular day is a battle enough, I can't even imagine what she's going to be like after throat surgery. Twice. And our past relationship with dehydration is a bit rocky..

INDECISION
Should I schedule the surgery before Christmas or wait until after the holidays? I don't want to ruin any holiday fun, but I also want to get started and get it over with. Will she miss her Christmas party at school if I do it now? For the surgery in February will she miss her Valentine's Day Party? Does it matter?

EXCITEMENT
Excitement about the potential that this could be a game changer for her. If she was physically incapable of making certain sounds because of her structural anatomy, fixing that could open up a whole new world. Also, the tubes and ear cleaning could open up hearing possibility, potentially reducing the need for hearing aides and improving her speech as well. She has been so talkative lately and even coming up with stories from school to tell me randomly, some of which I can understand and interpret, and some of which I have to smile and nod. I know she wants to communicate more and I am excited to see how this helps her.

GUILT
She has been in speech therapy since nearly the day she was born. We have pushed her and encouraged her and practiced these sounds over and over, trying in vain to get her to pronounce things correctly.. and guess what? She couldn't. Physically couldn't. She was trying her hardest. Doing her best. And she couldn't.

THANKFULNESS
I mentioned one time that I had considered not going to the CdLS Conference last year because I was feeling guilty that I didn't think we needed the medical counseling or intervention that others did. But it was at that conference that the Developmental Pediatrician first mentioned VPI to us. If we hadn't been there.. if we hadn't met with her, how long would it have took us to notice this? Would we have ever? Could she have lived her entire life with speech difficulties that could have been fixed? So thankful we were there.

So lots of emotions to process over here. Praying for wisdom and strength that we're making the right decisions and all the surgeries go as planned. It's going to be a rough couple of months around here but we are clinging to the hope that it will all be worth it in the end!

5K Motivation

I posted a blog a few months ago about how this was going to be a year of growing and learning and trying new things. I mostly meant in my photography business but somewhere along the way I got tangled up in some personal growth stuff as well. I've honestly never really given much thought to the idea. The extent of my personal growth background consisted of walking through the aisle at Barnes and Noble and giggling at all the "self-help" book titles out there.. "So Your Son is a Centaur", "How To Be Pope", "Knitting With Dog Hair,"or "How To Speak Cat." I don't even know..

Anyways, one day back in May I got a crazy thought in my head. Really crazy. I usually like to hear out the thoughts in my head, entertain them a bit at least, but this one just seemed a little out of control, pretty far fetched. It told me something I'd never heard it say before or ever expected it to say in my lifetime. Something that really sounded like a bad idea.. potentially dangerous.

It told me I should go for a run.

This voice made it seem like this "running" would be something enjoyable to do.  Positive, if you will. Now let me preface this by saying I am NOT a runner. Oh sure it may look like I'm semi-in shape and I played sports and actually ran track in high school, but I am not kidding when I say that in track practice after the run jog around the block (we weren't fancy enough to have a track at our school) and actually only 3 sides of the block so roughly 300 meters, as a warm up for the rest of the team, would literally end me. I would be heaving in the intersection, partially collapsed near the stop sign, gasping and calling for oxygen, while stumbling around with my hands above my head to stop the ever increasing cramps that were sure to take my life shortly while the rest of the team took their "warm up" and joyfully continued on to their 10 mile run that was their actual practice. What in the world??? I was mainly a sprinter and jumper in high school (not really that great of one either..) and I absolutely hated it when my coach would make me run the 200m dash. Dash? There was no dashing involved. In my world, the 200 meter was akin to an Olympic marathon. One that I had to pace myself and conserve energy so as to be able to complete the long journey. Carb loading the night before was a must. I am not a long distance runner. It's just not something I'm naturally good at. I never have been. My entire life whenever I've heard someone say that they run for "fun" I assumed they were either 1. lying. or 2. certifiably crazy and I should back away verrryyy verrrrrryyyyy slowly. There's a man who runs Ella's Run every year who jogs a "warm-up" 5K before the actual race. What in the actual world... I'll be adding that to my list of wonders to ask God about someday..

This voice kept pestering me though. However, in keeping with my previous life story of primarily only doing things I'm good at, I wanted to ignore that voice. I knew I was not good at running. I knew I didn't enjoy it. I knew I would fail it it. But the voice was insistent. And weird. But eventually I listened. When my husband got home from work one day I informed him that I wanted to go for a run and after he picked his jaw up off the floor and wiped the puzzled look off his face, I laced up my 5 year old tennis shoes (might be an indicator of how often I work out that they're still in pristine condition..), closed the door to the sounds of my children gleefully guffawing about the prospect of their mother actually running, and took off down the road. That first night I made it an entire half mile. I was SOOOO proud of myself. I'm not even exaggerating. I hadn't run that far in years. I couldn't believe I did it! I hoped I had silenced that voice in my head, checked it off the ol' "life goal" list, and walked the rest of the way home, wheezing just a little. But a few days later, once I could walk again, the voice was back. I should run. Why? I don't know. Well.. I reasoned.. I ran a half mile the other day, I could probably do it again. But this time when I got to my half mile marker, I wondered if I could run a little further. One more block. Just to see. And this continued. Every few days I would get the urge to run, and each time I ran I tried to go just a little further than the last time. To the next electric pole, to the crick, past the dead badger on the road that's been there for a month (good motivation to get past the smell..). Until one day I ran an entire mile without stopping or dying. I couldn't believe it. I had not run an entire mile since the Standard Physical Education Test in 6th grade. No joke. At 33 years old I had done something I had not done in over 20 years.

I thought about stopping there but the next time I ran I still had that next electric pole in sight. Another thought started to creep into my head that if I could run a mile, well then maybe I could run a 5K, right? I mean.. people do that. I've seen it with my own eyes. That's only 3 times as far as I had just built up to running after an entire 2 months of training. *eye roll. But the scary thing was, I honestly didn't know if I could do a 5K. Like physically.. didn't know if I could do it. Remember in all my years of track I still couldn't make it around the block? I really didn't know if it was possible for my body to run that far and survive to tell about it. Maybe I had capped out at a mile. Reached my potential. I should accept my award, thank my colleagues and parents and husband and God and everyone who made this dream possible, and finish my running career at the top of my game. I kept it in the back of my mind but I honestly hardly entertained the thought. Because I didn't think I could. I wish I could tell you that I took my own advice about living without fear and regrets and challenging myself and not being afraid to fail, but I didn't. I wish I could tell you that I decided I could do hard things and signed up for the next 5K to keep me motivated, but I really didn't want to fail. So I didn't sign up. I wish I could tell you I was so focused on my goal that I sacrificed and trained hard every day to achieve it. But I didn't. I wish I could tell you I dreamed big dreams and set out to accomplish all that I could. But I didn't. I was too afraid of saying I was going to do something and then not being able to follow through with it, so I didn' say anything at all. But I did keep going a little further every day. Quietly, putting my head down, and taking a few more steps. And guess what? Pole by pole, dead animal by dead animal, eventually I did it. After that first mile, I ran a mile and a half, then 2, and eventually I ran an entire 3 miles. All at once. Without stopping. And I was still breathing. mostly

A few weeks ago I completed my first official 5K Race. I wasn't first. I wasn't last. But I finished. I still don't necessarily consider myself a "runner." I had intentions of buying actual running shoes, or maybe a arm band for my cell phone and better ear buds, but in the end I ended up wearing my half-a-decade old shoes, holding my phone, and swiping my 10-year olds headphones.. I'm not sure if running is something I'm going to continue to pursue or not. I can't say I necessarily enjoy the act of running, but I do enjoy having ran having run ranning. I enjoy when it's over.

It might not be a big deal to a lot of people. After all, I have friends who have run half marathons and full marathons, or family members who have done actual hard things like beat cancer.. but I'm still proud of myself for showing up and taking steps (literally) to be a better version of myself. Part of me wishes I would have set my big 5K goal at the beginning of the summer so I could write some motivational post about goal setting and not giving up and not being afraid to fail and if I can do it you can too and look how far I've come! But I'm obviously still quite the work in progress. Maybe it's ok that I didn't set big goals or dream big dreams. Maybe it's ok that I just literally put one foot in front of the other. Maybe it's ok that it took baby steps and not giant leaps. Maybe there's more than one way to get to your goal. Maybe there's more than one path to take. Maybe I'm just BS-ing to make myself look better. Either way..

The point is- No matter what you want to do or how you want to get there, even if you don't know or don't think it's possible, just start. Just show up. Take one step. And then another. It's scary to dream, but it's even scarier to think about a life without dreams. Don't be too afraid or caught up in not knowing how it's going to end or if you're going to be able to complete it. Live your best life. Be your best you. Listen to that crazy voice in your head every once in awhile. With caution of course. I still think 26.2 miles is a little too far.. ;)

CdLS Conference

Whew! The kiddos are finally back in school

and it's time to start doing all those things I said I would do but haven't because there were 1000 kids living here all summer and I literally couldn't hear myself think at any given moment of any given day and refereeing arguments was my #1 job and boy did I own it.. By the way, does anyone happen to know where that mom went who used to write sappy back to school posts about not wanting her kids to leave and missing them? Hmmm... weird. I'm not actually sure either.. Anyways, all those things I said I would do and haven't? Starting with updating this blog about our CdLS Conference trip! Well, actually the first thing I did when they went back to school was scrub this sticky floor because summer + 5 kids = ew. But now that that's checked off the list, to the blog we go. (And also thank-you's from Ella's Run are going out soon too! *hangs head in shame.. I ordered them immediately after Conference and had been waiting and waiting, and forgetting, and waiting for them to come in the mail until I just realized last week I was supposed to pick them up at the store. Oops..)

Way way waaaaaayyyyyy back in June (it feels like a long time ago) we were able to attend the National CdLS Conference in Minneapolis which is just a hop, skip and a jump away from us so YAYYY for saving lots of money on airfare! This was our 4th Conference which is just ridiculous that time has gone by so fast that it's even a possibility that we've been involved with this community for this long but also WOW, what a blessing that we've been able to attend all of them since Ella has been born and we learned about CdLS for the first time! We were able to drive up a few days early and stay at my aunt & uncle's cabin about an hour south of where the Conference was. It was SUCH a nice few days of getting away for our family (besides Hudson spiking a 102 fever on the drive there..). We were able to fish, boat, swim, play games, relax and just hang out together. Perfect vacation!

After a few days at the cabin we headed up to the hotel to get checked in to Conference. From the  very minute we walked in we saw people from our tribe. Families we had connected with at past Conferences, people we had previously only known online and kids we could recognize were "ours" just by seeing them and were eager to get to know! There is just such a feeling of connection and acceptance between families there it's hard to describe! 

We spent the next few days going to workshops and trying to take in all the information we could. Probably one of the best workshops was about special needs trust and financial planning. There is just soooooo much to learn and do to prepare for the future but we're taking baby steps to get there. We also met with specialists and learned things from the OT and Developmental Pediatrician that we've been able to implement at home and now working with at school as well. I am overwhelmingly thankful for these resources. Just earlier today I was chatting with the OT we saw at Conference and getting more information from her and that resource is PRICELESS. Having someone else on your team that is knowledgeable and helpful and another advocate can just feel like a huge weight off your shoulders when you're not sure where to turn or how to go about getting what you know your child needs. I may or may not have started my last email to her with 1. I love you. Professional or not? I care little.. 

On one of the evenings we were there, the city of Minneapolis even took part in Conference by lighting up the I-35 bridge purple for CdLS. Super cool!!

One of the most heartwarming parts of Conference is the dance party after the banquet on Saturday night. I wish everyone could experience it. Kids and parents and grandparents and doctors and therapists of all ages, sizes, colors, nationalities, developments, verbal, nonverbal, mobile or not, out there on the dance floor celebrating life together! What a joy to see people of all abilities out there sharing that beautiful space together. The teen boys who were volunteering at Conference and out there dancing with all the CdLS-ers?? Hand me a tissue. The whole box.

I was so surprised to meet sweet Aubrey who we had connected with through this very blog.
Her and Ella could be sisters!! 

Representing Nebraska! 

These girls. Some with CdLS. Some not. Didn't matter. 

A.J. Ella and Lauren coming all the way from California to New Jersey 

We had an amazing 5 hour car ride home (seriously!) Sunday morning with only ONE stop (can you even believe it??). Well... actually there was 2 but I'm going to choose to not count the first one that occurred before we were even out of city limits in the pouring rain for the 2 year old that someone was supposed to take potty but apparently didn't.. ahem. Anyways, the kids were so well behaved on the way home and Ella and Levi giggled and laughed the entire last hour which we were just delighted with. Until we actually got home and realized they had broken into the bag of snacks and were throwing Cheetos and Oreos allllllll over the back seat and there were crumbs literally in every crack and crevice. So that's what was so funny, huh?

We really had an amazing trip and are so thankful for all the support and encouragement and love our friends and family community shows Ella!  I have to admit I was a little hesitant about this Conference before going. I started to get a little insecure.. like, maybe we shouldn't be going to these Conferences after all. Maybe we aren't going to fit in anywhere. Maybe we've been to enough. Maybe it's selfish to go to our fourth when there are others who have never been able to attend a single one. Maybe we know everything we need to know and aren't going to learn any new information from the professionals. Maybe it's time to bow out. Step back. Take a break.

But I quickly remembered why we continue to make these Conferences a priority, why we continue to go. We go to encourage others who are just starting this journey and in turn be inspired by the ones who are ahead of us. We go to expose our children to people of all abilities and make it the norm for them to see. We go to show them love and make room in our own hearts for love and acceptance to grow. We go to grow as individuals. We go to learn about new ways to care for and provide the best life for Ella. We go to truly remember what's important and relationships and connections are at the top of the list. We go to have community with members of this club that no one ever wanted to belong to. We go because there is space at the table for anyone and everyone there and we want to be a part of it.

You know what's funny? Our kids who are younger than Ella have never asked about why she's different. We talk about CdLS openly, but they've never once asked what it means. Hudson turned 5 this summer and is a very bright and observant child. I wondered if he would ask why we were doing 'Ella's Run' this year. Why does Ella get a run and not him? Nope. I thought for sure he would ask why we went to Conference. Where we were and why we were staying at this random hotel and leaving him in childcare with these random people for the first time in his life? Nope. I thought he would notice the kids in the lobby and dining hall with obvious disabilities, limb differences, wheel chairs.. Nope. He sees no differences. And that's exactly the way we want it to be.