Tuesday, July 16, 2019

she's 10!

Happiest of birthdays to our precious Lily Kate! Double digits! And in our house double digits means a surprise trip with mom and dad. And for this superstar ...we're heading to New York City!

As I was looking through old pictures thinking about both of my girls (Emma's 17th birthday is Friday) ... I was brought to tears looking back pictures.

"For this child we prayed ..." ❤️

I'm not sure how many people know (and I'm not even sure if I've mentioned it here on the blog) but we prayed and prayed and prayed for that girl. We tried for years for baby #3 and thought for sure it just wasn't in God's plan for us. Until one day ... it was.

July 16, 2009

Of course it was when Chris was accepted into grad school ...in North Carolina ...but just a minor detail. 🙄

So looking back at her sweet pictures brought back all of those wonderful memories of how incredibly excited we were to welcome her to the world.

And flooded me with so much emotion.

2017...when PANDAS turned our world upside down.

It's like we were living in a snow globe. Our sweet family right there inside the globe. And then one day, someone picked up the globe and shook it hard ... and it was almost impossible to see that sweet family in the center.

So much mess.

So. Much. Chaos.

Today Lily turns 10. And we are filled with JOY that she's happy and healthy.

She's charismatic, energetic and makes us laugh every single day. She's kind and compassionate and I just know God has BIG plans for her.

PANDAS was (and is) a (BIG) part of her story and it was meant to be part of her story all along. It's a part I never wanted. Gosh I hated so much of it. It just about broke me.

But it also showed me that when someone shakes our globe, and shakes it hard, I'll fight like hell until all of the mess and all the chaos settles ...and I'm finally able to see that sweet family in the center again.

This weekend we take our little girl to New York City!

Our little girl who couldn't bear to be around people or eat in restaurants is going to New York City to celebrate double digits! Life is so unpredictable. And God is SO good.

When I think about that sweet family in the snow globe ...I realize it can easily be shaken again. Someone (or something) can pick up that globe at any point in time, and shake it again. Shake it hard.  But I also realize if it does, the chaos will eventually settle. And even if it doesn't settle as much as we'd like it to, that sweet family is glued down right there in the center.























Ten years ago this sweet girl completed our family in the most perfect way. She's our cherry on top and we couldn't love her more.

Happy 10th Birthday to our precious Lily Kate.

You are so loved. ❤️

Tuesday, June 4, 2019

a busy weekend (that didn't break us)

This past weekend was full of crazy. Friday was field day for Lily. And it was HOT! It's a fun-filled but exhausting day.

Friday night was Connor's 8th grade dance and Lily wasn't about to miss a chance to see Connor and his girlfriend all dressed up. We had fun taking pictures before they were off to the dance then decided to take our girls out to dinner.


Now all of this seems so normal, right? Like any 9-year old kid can handle field day then going out to dinner. No big deal.

Well ...what I've learned (the hard way) is that NOT just any kid can actually handle that. Because 2 years ago, our sweet girl couldn't. Her sick little body and her sick little brain just couldn't take it.

Now throw some dance recitals and a piano recital in the mix and any kid would be exhausted.

So as I sit here thinking back on our crazy weekend ...and that Lily did it ALL with a smile ...I'm amazed. I'm humbled. I'm grateful.


My extended family over the last 2 years has endured some dark seasons. I have some dear friends going through their own dark seasons. And it's tough. Life is tough.

When I think back to our dark season with Lily I vividly remember feeling that God doesn't give us more than we can handle. But this broken world does. It absolutely does.

And unfortunately it oftentimes will break us. And then God, in so many different ways, will slowly put us back together again. And we start to heal.


I was trying to think of something really compelling and amazing to uplift a sweet friend today going through a very dark season. And honestly...all I could say is that sometimes life just plain sucks. It just does.

I didn't add on any "Tony Robbins motivational-speaking" or uplifting scripture (albeit that is definitely helpful at the right time) to the end of that because sometimes you just have to sit there. You just have to sit in the dark with someone.

You both know that light is coming. You both know God is in this. You both know that your faith can conquer whatever beast you're facing. But you also just want someone to be real. Just be real with me in the darkness. Because you and I both know it sucks.

When I think back, I appreciate so much about how we were slowly put back together again after being so broken. How we slowly began to see more and more light in our dark season.

I appreciated the phone calls, the texts, the letters, the random flowers showing up on my front porch, the friends who listened to me, who cried with me and the friends and family who sat with me in the dark and agreed that sometimes life just plain sucks.

This crazy busy weekend had me reflecting on my girl and what our life looked like 2 years ago. My heart just about burst watching her dance on stage this weekend ...hearing her play the piano in her very first piano recital (she just couldn't bring herself to do it 2 years ago) ... and seeing her do it all with a smile.


Life does suck sometimes.

But then it's amazing again.

And you're given the wonderful gift of hindsight ...

And you're so incredibly thankful that in that dark season, when life really sucked, you never gave up.

xo


Tuesday, May 21, 2019

the manic month of may!

Hard to believe it's already May and we've only got a few weeks of school left. May is a crazy busy month with testing, exams, school projects, dance recitals, piano recitals, chorus performances, band concerts...the list goes on and on and on...

May is also a weird month for me. May 2017 is when we saw Dr. Latimer and she confirmed Lily's diagnosis. I know my other kids had a ton going on just as they do now. We were in the midst of dance rehearsals, testing, exams, 8th grade graduation, chorus performances, band concerts...and it's all a blur. It feels almost surreal to look back on that time. That time when I woke up sad and scared and exhausted every morning having no idea what the day would hold...but I woke up. I got out of bed. And smiled at the kids and smiled at our neighbors and volunteered at school ... and looking back I'm so grateful that God gave me the strength every single day to do that.

May 2017 -- our first visit with Dr. Latimer
May 2018, a year later, we went for our yearly check-in with Latimer. I had assumed we'd go every May for a check up...far into the future. No way was I going to let PANDAS take hold of my sweet girl again.


But you know what? May 2018 was the last time we saw Dr. Latimer. A year ago. One year ago. A whole year. And even then, a year ago, she was completely fine.

Leaving the office that day, Dr. Latimer said with a huge smile "I hope to never see you again." She hugged Lily. She hugged me. We thanked her through tears of joy (and a lot of pain) ... and that was it.

May 2018 -- our second and FINAL visit with Dr. Latimer
This May is coming and going. No appointment in Georgetown. No meds to manage. No stress that feels like I'm carrying the weight of the world.

Last week Lily had a fever. She had been congested so I assumed it could be an ear or sinus infection from all the crazy pollen here in RVA. I took her in to get checked out and all was fine. Nothing to report. Nothing wrong.

And you know what? She was fine. She was mentally fine. She didn't freak out. She didn't break down. She didn't cry. She didn't panic. Nothing.

And you know what's even more surprising?! I didn't freak out. I didn't panic or cry listing all the "what-ifs" in my mind. I was surprisingly calm.

On our way to the doctor that morning, I said a prayer to just be with us. Be with Lily. Be with me. And I had a confidence I haven't had in a long time that we were gonna be just fine.

May is somewhat bittersweet. I deeply feel the pain I felt back in May 2017 if I think too hard...so I just don't think too hard. I choose to enjoy the sweet, happy, healthy little girl I love so much.

What a difference a year makes
I'll take the manic month of May ...the hustle and bustle and chaos and craziness of May 2019 any day over the hustle and bustle and fear and uncertainty and deep, deep pain of May 2017.

I have learned not to take our good health -- or our ability to run from one activity to another without a meltdown -- for granted.

xo

Monday, January 21, 2019

happy new year

Happy new year!

2019.

Wow.

Two years ago is when our life turned upside down.

Literally.

January 2017.

Some days it feels like yesterday. Most days it feels like a lifetime ago.

A dear friend shared something with me I just loved and she said it made her think of me.

2017 broke me.
2018 opened my eyes.
2019 I'm coming back.

I hope next year it goes something like this:

2017 broke me.
2018 opened my eyes.
2019 healed me.

I think Lily is healed. Physically and mentally from the trauma of PANDAS. And for that I'm beyond grateful.

I think Emma, Connor and Chris have put it behind them. Again...so grateful.

And for the most part I have too...I'm just ready to fully heal. To start taking care of myself again (Lord willing to finally lose the weight I gained with the nightmare) and get back to not being on the edge of my skin when I hear someone has strep.

It's almost surreal when I think about it.

What PANDAS did to my sweet girl. What it did to our family.

But you know... it's amazing to see all of the blessings that came out of it.

Lily will always have this as part of her story. We all will.

She'll always have to be careful with her diet and her medications and making sure she stays well and I'll worry.

I'll always worry. More than I should I'm sure.

But we're looking forward to a happy, healthy new year full of healing.

Father Daughter Dance 2019
And for that, I'm grateful.

xo


Monday, November 19, 2018

to tell or not to tell...

A pastor at our church asked if I'd be willing to share our story with a small group that meets on Sunday mornings. My initial response was no. As in...no way, no how, not happening. 

No. No. No.

Then I thought about it. And I prayed about it. And I'm not sure exactly how it would help someone else, but I am willing to share our story more publicly and share how Jesus held us up during a very dark season of life.

Now am I ready??? That, I'm not so sure. 

To start preparing I did a whole brain dump. Just typing whatever came to mind. Which is basically this blog. 🙄

And as I read it aloud, my heart started pounding. And tears started flowing. It was such a painful reminder of what life was like during those dark months.

I struggle with how to paint the appropriate picture without one, being too dark...and two, without sharing too much about Lily. It feels almost like an invasion of her privacy to get into the nitty-gritty details. 

A few people know. And I do mean a few. Our family ...meaning Chris, me and the kids of course...because we were living it day in and day out.

My mom...because I needed her and because duh. She's my mom. 

My dad saw glimpses of it and heard painful stories from my mom.

My best friend. She probably has a good idea of how traumatic it was. I shared with her through my tears. And I ignored her calls during some of my darkest days when I basically shut everyone out.

I had some dear friends and of course my other family members who knew we were in pain but probably couldn't picture the nitty-gritty. Who would even want to? 

It was dark. And isolating. And lonely. And painful. Oh...so, so painful.

I think the easy way that people (all well meaning of course) say to me "I'm so glad Lily is better" probably don't quite get the gravity of what we lived. 

I had a few friends watch the 20/20 special last summer and send me a message saying they had no idea it was that bad.

Yeah...it was that bad.

And when it's your precious child?

Yeah...it's indescribable just how bad.

Like...I would never even be able put into words how bad.

It took such a toll on me.

Physically. I gained 30 pounds. Yes...you read that right...30 pounds.

I stopped exercising. I ate what I wanted. I drank more than I ever had before. And I just didn't care.

Mentally. I was sad. Just overall sad. I could see it when I looked in the mirror. I could see it in pictures from that time (which kill me to see).

I was angry. And bitter. And scared. So scared. I've never been so scared.

Spiritually. I wondered where God was in all of this. I worried about what I would think if she wasn't healed. What if she doesn't get better? Will I still know that God is good? 

It was a dark, dark season of life. 

And we survived. 

God held me up when I was drowning. He showed up when I least expected him. And he was faithfully pursuing me all along. 

I'm not sure I'll ever do the story justice. That I'll ever be able to tell it in way to really show how painful it was.

My prayer is that God would use our story in a positive way to help others...in whatever way others might need it. 

I'm working on the 30 pounds by the way (20 down...10 to go...from PANDAS that is...a few more from too much Gelati). 🙄

I'm exercising again and feel better.

I'm not sad anymore. Or angry. Or bitter.

Scared...hmmm...I might still be a little scared. But as hard as it is, I'm trusting God with Lily's story. With our story. 

And Lily...well that girl is happy and healthy and has a sweet, compassionate and pure heart. God has big plans for that girl.

xo

Man do I adore this girl!






Monday, October 1, 2018

life lately

There are so many blog entries over the last 3 months (can you believe it's been 3 whole months?!) that I've started but never finished or posted. I suppose you could assume that's a good thing...life is moving along beautifully and PANDAS isn't on the top of my mind anymore.


For a long time, I hesitated when people asked how Lily was doing. Now I don't hesitate at all. I've learned I have to assume each day will be fine. Even great. And honestly...people don't really ask anymore. Which I suppose is also a really good thing.


I received a coupon code for a photo album site and decided to start putting some yearly albums together to print. We all still love looking through photo books so I started going backwards. Starting with 2017.

PANDAS is so far from my mind...I didn't even give it a second thought...of what putting together a 2017 album would stir in my heart.

I started with January and the second I opened up January 2017 on Google Photos there she was. A sweet, precious picture of my girl who looked so very different than the girl we see today.

A confused, scared and sick little girl.

And my heart sank.

As I continued looking through pictures, the tears just started flowing.

My heart hurt.

And looking through the progression of pictures...the progression of PANDAS for the first half of 2017...I felt the overwhelming and suffocating fear that I felt so much of that year. And part of me wondered if I even wanted to have a printed memory of that painful year.

As I continued through the photo book, I saw doctor appointments and surgeries...and so many smiles. She was hurting. We were hurting. But through it all, through all of those dark days, by the grace of God, there were also so many smiles.

It was a weird day. Just putting together that album. I didn't finish it. It just conjured up so many emotions I had put it away.

I'll finish it.

I know I will.

I mean if I can survive 2017, goodness knows I can put together a photo album, right?!

Lily continues to do well. She's been symptom free for over a year. A whole year. ❤️

Do you know how much and how hard I prayed I would be able to say that one day?!

She's as sweet and sassy as ever and I couldn't be more grateful. Watching my precious daughter suffer so much was undoubtedly the greatest pain of my life.

Doing the album ...well, starting the album...made me realize I need (and should) change the narrative of 2017. That dark year in our family's life.

2017 was in many ways, horrible. Awful. Heartbreaking and devastating.

2017 was also a precious picture of grace. A confirmation that our family of 5 (plus our supportive extended family) will not be broken.

I'm no longer waiting for the other shoe to drop. I'm not waiting for her to get sick or PANDAS to rear its ugly head. It might. Actually...odds are, it will... in some way, sometime.

And if and when it does, we'll love her harder than ever ...and hold on tight for the wild ride.

Her smiles...her happiness...her overall good health...is never lost on me.



Before 2017 I took for granted so much.

Today...I'm thankful for so much. So many things...big and small.

2017 made my girl who she is.

Strong.

Brave.

Faithful.


And for that, I'll always be grateful.

Life lately is so good. Oh so good. ❤️

xo

Sunday, July 8, 2018

fear

We listen to Christian music a lot in our house. But especially when I'm making dinner each night. And one that comes on every single time is about fear.

And when you sit and listen...really listen...it will bring you to tears.

"Fear, he is a liar.
He will take your breath
Stop you in your steps.
Fear, he is a liar.
He will rob your rest,
Steal your happiness,
Case your fear in the fire...
Cause fear, he is a liar."

Last year I was so scared.

I was scared when I woke up each morning. I was scared what each hour would bring. I was scared of every phone call, every doctor appointment...every encounter with my sweet daughter...the precious girl I love with all my heart.

I was scared for the next hour, the next day, the next week.

I was scared for her.

I was scared for our family.

I was scared for our future.

"When he told you you're not good enough,
When he told you you're not right,
When he told you you're not strong enough..."

And I never felt like I was good enough.

Fear did exactly that.

He robbed me from rest. I was riddled with anxiety. I couldn't sleep at night. I couldn't rest in Jesus. I just couldn't.

He stole my happiness. I was so unhappy. So, so unhappy.

Because I was so darn scared.

Tonight, for the first time in a long time, I looked back. I looked back at a year ago here on my blog.

I remember what life was like last July. But I've been terrified to look back and read what I was feeling.

Tonight I did.

And it hurt. It hurt a lot. Tears started flowing. I just couldn't stop them. My stomach was in knots. My heart was racing.

I know I can't live in fear.

Fear is a liar.

And he is so powerful.

He sucks the life out of me.

I'm thankful to have a faith bigger than my fear...most days.

One night last year, in the very beginning when life was so sad and so dark, I cried myself to sleep silently praying to God the only thing I could come up with.

Begging him to not leave me. Please God don't leave me with this. Please show me you're here.

And every few days, sometimes every few hours, he would show up.

He showed up. ❤️

A quote in today's sermon at church resonated with me:

"Now that I look back, it seems to me that in all that deep darkness a miracle was preparing. So I'm right to remember it was a blessed time and myself, waiting in confidence...
even if I had no idea what I was waiting for."


Fear sucks.

It really does.

I'm thankful that God is bigger. So much bigger than my fears.

My biggest fear now is very different from a year ago.

My biggest fear now is how crazy she'll look when she walks out the door (#messyhairdontcare) 🙄

Fear is a liar. He'll lie, cheat and steal all of our happiness if we let him.

I'm so thankful God is bigger than that.

I'm so thankful God listened.

That he listened to that painful prayer and didn't leave me. 

xo