Tuesday, July 30, 2019

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.

Tuesday, July 9, 2019

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.

Monday, April 22, 2019

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!!

Wednesday, February 6, 2019

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!