Courtney Day

Today I took a mom day. And by mom day I mean a Courtney day because for the majority of the day I wasn't mom at all!

The antique festival was today and since Eric was working as one of the bike medics Stacey and I decided to go and hang out for a while. We had a good time, and got to eat my favorite Thai food! Stacey found some cute jewelry and I got to hang out with my guy. After a while I started to get very hot and had to sit and put my feet up. Thankfully we were totally prepared and had brought Gatorade, Propel and cooling towels.

We got these last  year during hurricane season because we were pretty sure we were going to be without power at least for a little while and Ali is VERY heat intolerant. We ended up not needing them and they got tossed under the bathroom sink, but I remembered them for today and they were perfect! They stayed cool and damp literally all day. I wet mine at 1:30 and at 7 it was still wet and cold. I will definitely be keeping them handy this summer. We got them for like 5 bucks in the camping section at Walmart.  10/10 totally recommend! (however, they def have to be washed before used the first time because the dye runs out when it first gets wet.)

After the festival we came home and set up our hammocks and I napped while Stacey read. It was so great. I needed the day of relaxing and not being in charge of the world, honestly. It doesn't happen  frequently enough, tbh.

 Eventually a storm blew in and it was back to reality. I had to enforce school time and share a little TLC with a not-feeling-so-great teenager. But that's life. Now it's late and we're eating popsicles and cuddling with dogs and relaxing. I think tomorrow I'll spend some more time in my hammock. And the day after that :)  It's the best place!

It's a Hard Knock Life

I've been struggling a lot lately. Life has been hard around here. As most of you know, Dylan was in the hospital a few weeks ago due to a serious POTS flare up and as some of you know Ali has been to the ER twice in as many weeks for 2 different reasons. It seems that that is just life now. A revolving door of doctors appointments and hospital stays, trips to urgent care and to get blood work done. It just never ends.

When we were in the hospital I got a little punch in the gut. On my Facebook memories was a picture of Dylan from last year, right around the time he was first diagnosed with POTS. And then I took a picture of him that same day. I wasn't going to post it, but I just, I feel like I need people to know. To see what this awful thing has done. Not for pity or crying emojis, but for understanding.

 

This is what has happened to my boy in a year. He looks so small and sick now, (even though somehow he is 5'4" already) and the glow has just gone. Usually the illnesses we have are considered invisible illnesses because most people with them look like normal healthy people. People say things like "but you don't look sick" or a million other unhelpful things. But in Dylan's case, it has taken it's toll on his body. He has lost weight, the circles under his eyes are a permanent fixture and the paleness pretty much is constant, even with his olive skin. We know that his POTS is in a huge flair, and he is having some malabsoroption issues as well as perhaps some adrenal issues. It's a lot! And we really aren't sure what it all is right now, just a ton of things piling up on top of each other. Thankfully his wit and hilarity are still mostly intact, though he could do to lose the teenage attitude!

Last week his doctor recommended that we get him fitted for a wheelchair so that he can continue to participate in life, even on his bad days. It won't be for every day use, just on the really bad days when he can't walk, or for when we have big outings like when we went out for Ali's birthday (we ended up having to wheel him out to the car on the rolling walker by the end of the day). At first we were like "Surely we aren't there yet..." but after some talking with the doctor and some other parents of kids with POTS, we've decided that it's the best thing for him. It isn't fair to make him wait around until his POTS gets better (if it does) for him to be able to go back to school full time, or to go to the arcade with his friends or go to the mall. He deserves a normal life and we will use whatever tools it takes to get him there.

As for me, this is going to sound so trivial, but I think one of the reasons I have been struggling is just the time of year and the prevalence of social media. It's Prom season (or spring formal in Dylan's case) and Spring Break and everyone is posting pictures from the beach or at festivals or all dressed up before their dances and I MISS THAT! I love getting to see everyone's lives from afar, but it is really hard for me to know that every spring break spent getting caught up on school work is a spring break we won't get back. For Ali, there are only 3 left. I know it's silly, but I just wish we were experiencing all of the same things instead of being holed up in the house just trying to survive. That's why it was so special that we got to go out for Ali's birthday, because it just doesn't happen often enough. We don't get to go and do things because just an afternoon trip to the movies renders them unconscious for the next 18 hours. It's a hard life to live, honestly. I am trying my very best to be positive and just keep putting one foot in front of the other. Some days that is easier than others, but we will keep on going. If you need me, I'll be hiding in my hammock!

Celebrations

I cannot tell you what this picture means to me. It honestly brings tears to my eyes. To most people this is just a picture of some teenagers playing mini golf but to me it's so much more. This picture is determination. It's fierceness. It's courage. It's love and loyalty. It's joy.

This picture is life.

A week ago Dylan collapsed in the hospital and Ali went to the ER with an uncontrollable migraine. 2 days ago Dylan couldn't walk on his own and yesterday Ali was hooked up to an IV.

But today? Today we partied!

Today we played 10 holes of mini golf! We spent WAY too much money on arcade games and candy and then Stacey and I kicked their butts at laser tag. We had an absolute blast.

We had dinner at the mall because they have Ali's absolute favorite pizza and then Stacey Dylan and trinity and I stayed to shop a bit while Eric took Ali home to rest. It was a great day and while tomorrow they will be wiped out and have to rest a few days to make up for it, I am so thankful that they had today to be kids.
 
Today I am just thankful for that. Thankful that even if just for today, they got to be kids.

24 hours

Well, it's been a little over 24 hours since Dylan was (finally) admitted at the hospital and I just wanted to drop a quick update.

The first night was a rough night. They started him on fluids, which is like, protocol 1 for kids with POTS, and after we got settled they sent an aide in to do his vitals.  He was fine with his laying down and sitting vitals but when we stood him up he nearly fainted. At first the automatic cuff wouldn't even register his blood pressure, and his heart rate went up to the 140s, and the thing that surprised me was that his sats dropped to the low 80s. He was breathing heavily and before he actually hit the floor we sat him down and called the nurse in. After he sat for a few minutes we redid the standing vitals and it happened again, his sats dropped, this time into the 70s.

Now I have no idea why his sats are dropping, and no one has given me any ideas yet, but it is charted and is something we are watching. We aren't sure if this is a capture problem or an actual saturation problem yet, but suspect there is some kind of perfusion issue.

Sometime in the night he woke up in pain, his arm swollen because his IV had infiltrated so we had to deal with that and get another IV put in. He is NOT a fan of needles, but thankfully his nurse knew who to call, and that person got it first shot. (I remember calling the nurse in the night bc his IV was infiltrated, and I remember her walking in the door, but everything after that is a bit hazy lol)

Of course this morning he woke up feeling much better after they pumped him full of fluids over night. We were able to go to the rec room and play Rock Band on the XBOX for about 30 minutes, but then he came back and took a 3 hour nap. He said when he woke up that he was starting to feel bad again. I was hoping the fluids would last a little longer, but we'll see in the morning, I  guess.

For now the plan is to adjust some of the meds that he is already on and see how it affects him. It's a slow process, but I've got nothing but time. This kid needs his life back and I have made it ABUNDANTLY clear that we aren't here for a band aid. We will also be running some more blood work in the morning. We are on the general peds floor, but thankfully our amazing cardiologist is talking with the pediatricians frequently because he is making sure things get done.

I'll update more when there is more to update. Or if I'm ready to pull my hair out!

Exhaustion

I am exhausted. I have had four hours of sleep, so I can imagine that this post is ill advised and out of character. But I've had four hours of sleep and I don't care.

Do you ever feel like the whole world is spinning around you? Life is carrying on while you're just standing still watching and there is nothing you can do about it?

I am so exhausted.

There are many things I am thankful for, but most of all is my family and our home. Our home is our sanctuary. We don't allow conflict or outside stress to affect who we are as people or our relationships with each other. It took years of strife and fighting to get to this place, but it was worth every tear, every fight, every long night, all of it. I would not change anything. I have the absolute best family a person can ask for. The relationships we have built with each other are unbreakable. The web we have surrounded ourselves with hold each of us up even in the hardest of times. And man are times hard.

Did I say I was exhausted?

It's funny. My life feels so contradictory, even from minute to minute. One minute I am so sure that this is the best life ever. We have never ending, unabashed, unconditional love, we have laughter and sarcasm. We have the best kids on the planet. We don't fight or yell, we have learned the art of compromise and grace, like a second language that we speak from the heart. We really don't have a choice. And that's the next minute. The next minute I am overwhelmed, exhausted, stressed beyond relief, sleep deprived, and aching as I watch my kids' teenage years slowly pass them by. Watch as all of the things they love slowly slip away. Sports. Clubs. Friends. We are drowning in school work. Dylan can't walk without a walker or shower without a shower chair. Ali has had a headache every day for nearly 3 years, and is fighting allergic reactions to what we jokingly refer to as the air because we don't always know what she's reacting to. So we carry masks and benadryl and Epi-pens. My purse is full of medicine and my favorite contacts list in my phone include several specialists. The front desk guy at the pediatrician knows me by name, by face, even by voice, because we talk so often. And he is a rock star, as is our pediatrician.

We are blessed. We have people fighting for our kids, trying new things and bending the norms to find things to help them function at their best. But it's slow. It's hours of waiting for a return call from the doctor. It's days of waiting to see if this new medicine is going to make any difference at all. It's walking the fine line between tachycardia and hypotension. It's checking vitals more often than you care to, and hoping your kid doesn't pass out while you do. It's having 4 different doctors tell you something different about a medicine and having to make the decision yourself and hope it's the right call. It's hours on the internet searching for any sliver of information that could explain this new bout of episodes. It's hurry up and wait. Just wait. It's feeling useless and hopeless as you watch your kid wither.

It's also so very exhausting. It's waking up in the middle of the night anxious about push-back from the school. It's trying to remember if you gave everyone the right meds at the right time. It's email after email to teacher and administrator and nurse to try to keep them caught up. It's teaching yourself again so you can teach them. It's tears and anger, and hiding all of it because you cannot for half of a second let them think that it is their fault. It's asking again and again how much they've had to drink, and when their last salty snack was. It's trying to somehow juggle taking care of the house, dealing with the day to day stuff like bills and groceries and laundry, and then simultaneously running from crisis to crisis, trying to keep the little smoldering embers from turning into a forest fire. It's Long days of single parenting as Eric works longer days to keep things going. Lots of phone calls that end in "I have to go, I have a patient" and "yeah, me too." (one of the kids)

And then... It's lots of late night netflix binges and hours long car rides jamming to our favorite music. (Kpop for me and Ali, Hamilton or an 80s playlist for me and Dylan) It's awful, dark, morbid jokes at the dinner table that only our senses of humor could handle. It's video games and DnD and coloring together. It's puppy cuddles and McDonald's runs. It's love and laughter and fun. It's listening to the kids argue, and then say I love you in the next minute when they think we aren't listening. It's love. And laughter. And home.

And it's so very exhausting.

Things I've learned being Super Mom

So it's 2019. I am unsure how that happened, but here we are. I'm 35 and my kids are both now officially teenagers. It's a weird time for us.

Anyway.

I've been thinking a lot about guilt lately, and how it eats at us. For a long time I struggled with guilt for not working outside of the house. I felt bad because Eric had to work so much to make it possible for me to stay home and I also looked all the people around me who had kids and managed to work and I just felt lazy and useless. Social media does not help this issue. We look at other people's perfect pictures and compare. It's human...

But y'all, that was dumb, because I'm Super Mom.  I make things go 'round in this house. And in making things go 'round in this house, I have learned some things. Today I am here to share some of my wisdom with you.

1. Pick your battles!

    I know this one may seem obvious, but I am serious. Do I want perfect children with perfect grades and perfect hair and clothes like I see all over my timeline? Oh yeah. But after years of battling chronic illness and ASD/ADHD, I'll accept C's if you tried and actually did all of your work. It's alright if your hair is dry shampoo'd as long as you don't stink. Did you wear those jeans yesterday? UGH fine, just change your underwear! I'm not compromising on meds, though. Take your meds! And yeah, I'll accept eye rolls too, because surprise, they're teenagers. I draw the line at slammed doors and being rude though.

Also, do I want a super clean house, a full meal every night and to be caught up on the laundry at all times?  Sure, but I'll take a pizza and a basket of unfolded clean clothes if I have to. It's fine. 

Are there 3 T.V.s in my living room? Yep, but we are all in the same room, and we are all chatting while playing our games or whatever it is that we're doing, so I'll accept the abundance of cords and controllers and consoles if it means no one is locked in their rooms!

2. Listen to your kids.

    I cannot stress this enough. Let them talk to you. About anything. Everything. ALL OF THE THINGS! I know you don't want to hear a single second more about Minecraft or Overwatch. I know you probably don't care about what boy (or girl) band your child is currently "stanning," or what drama is going on on their favorite show. But! Let me tell you. If you let them tell you all of the little insignificant things that you really are not interested in, when it comes time to tell someone about the big, important things, they will know without a doubt that you will listen, and they will come to you. Also, let them have emotions and bad days. You have them all. the. time. And for the love of all things... love them for who they are. 

3. Your good days do not negate your bad days.

    This especially goes for those of you with chronic and/or mental illnesses. You're going to have bad days. There will be days that you're exhausted or your whole body hurts. Days that you're struggling to get out of bed and just function. And then one day, you'll wake up and things will be okay. You'll clean the house or go to the gym. Day two will come and again, you feel pretty okay so again you do something productive. After several days of this you will begin to feel like a fraud. You'll feel like maybe you're making up your bad days. You'll think that if you can have this many good days and be able to do things, then perhaps you have no excuse for bad days. Then one day you'll wake up and that good streak will be over and you'll go "ohhhhhhhhh. Right." You'll forget though, so this is me reminding you.  It's great to have good days, but that doesn't make your bad days any less real.

4. Be kind.

    I mean this. Be kind. As kind as possible. There are going to be days that you don't want to be kind. Oof. There are going to be days when you want to be the opposite of kind. But honestly, there aren't enough kind people in this world, so be one. It will make you happier, and make at least one person's day just a little better. Also remember that kind does not equal weak. It takes great strength to not lose your temper, to put away your bad mood and smile at the lady in the drive through, to go out of your way to do a favor for a neighbor. Kindness does not equal weakness.

5. Make friends with your neighbors.

      I have found that having friends close by has made our lives so much easier and more full. I have people I know I can rely on in emergencies, but also, people that I truly enjoy having around!

6. Practice self-care

     This is pretty self-explanatory, but SUPER important. Be kind to yourself. Take breaks when you need them. Walk away and don't be afraid to say no. Take lots of hot baths. Drink hot tea. Or cold tea. Or whatever your go-to drink is. Every now and then, eat the cupcake. Take a swim. Or a run. Or a walk. Do what  makes you happy. 

7. Family Game Night!

8. Carve out time for your spouse.

     For a long time we lived in a tiny apartment with 3 kids and no privacy. Eric and I struggled to find time for just us. There are always distractions: kids, cell phones, work. One day, probably 6 or 7 years ago, we decided to take a shower together. For 20 glorious minutes there were no kids, no phone calls. No noise. We talked, REALLY talked with no interruptions for the first time in a long time. It might sound crazy but I swear those 20 minute showers saved us. We still, to this day, almost always shower together.

9. Last but not least... at the age of 35 I have learned... YOU ARE ALLOWED TO LIKE THINGS. You are allowed to like whatever you want to like. Remember when you were in middle school and all of a sudden that thing that you really, really loved wasn't cool any more and you had to stop doing it and pretend that you didn't like it? Yeah, I remember that. I spent a LONG time liking and not liking things because I thought it was socially acceptable, but not anymore! You know what? I like cartoons (like RWBY and She-Ra). I love metal music and video games. I am super loving the gym right now. And I have almost exclusively listened to k-pop for the last 6 months (this goes back to that whole listen to your kid thing. Sometimes you get dragged in lol) I am learning to play D&D and speak Korean (very slowly), just because I want to. Thankfully both of my kids figured out that they can like whatever they want early in life.

There are a lot of other things I have learned over the years, like how to tell if a doctor is going to do more harm than good, how to juggle every day things that need to be done with the never ending mini crises that seem to plague us. I've learned how to lure a run away pitbull into a car (the answer is cheese.. It's always cheese) and that Walmart grocery pick-up is the best thing ever. I've learned to love big and never give up. 

What have you learned?

For Them

Today I am thankful for these guys.

 Even more than I was last year. And yesterday. 

When Eric and I had Ali I was still a baby myself. We were 3 weeks away from our first wedding anniversary and I wasnt even old enough to drink. Yet there she was, this beautiful screaming pink bundle of heart arrhythmia. Not even two years later came a much chubbier, slightly bluer bundle of midline defects. And yet, they were perfect.

They completed us. We grew up together, in a lot of ways, especially Ali and I. I remember someone telling me once all of the tears this sweet girl would cause me. And they were right, but so far, not in the way they intended. I could not have asked for better children. I am thankful every day that I wake up that they are mine.

It has been a rough road, and there has been some mourning. Mourning the lives we expected them to have, mourning the loss of friends, passions, the loss of a normal teenage life. I was nearly in tears when Ali missed her first homecoming dance but she assured me with "eeww Mom, who goes to homecoming dances?" She is the definition of sarcasm and wit, and maturity, most of the time, beyond her years.

Dylan makes me laugh every day. He is smart and strong and secure, even when he insists he isn't. He knows who he is, and what he loves, and he never, ever compromises for anyone. He's kinda my hero.

They probably threaten to kill each other at least once a day, but truly, they would die for the other. They have a bond that they don't like to admit because, while they have nearly nothing in common, they have their health in common, and  I think it helps them to not be alone in it, even though it sucks.

These kids wake up in pain and go to bed in pain, every day. Some days they struggle to stay upright, to not pass out. Some days they dislocate joints walking down the hallway or doing homework. Some days are good days, and Ali and I get out of the house while Dylan is at school. Some days they sleep for 18 hours. It's life. And it's our life.

So even though they aren't the kids I envisioned when they were 2 and 4 and I had their lives planned out for them, they are my kids. They are amazing, loving, accepting, kind, strong kids of character. And that is what I am so thankful for. And I am so thankful they are mine.