Fitness, For Katie the Warrior

September Wrap Up!

It has been ca-razy around here! Dan and I have started private school tours and they’re taking up so much mental space and physical time. Why an insane discernment process!

On top of that we are settling into the school year. My job as chauffeur is in FULL swing. Insane but fun! I don’t even want to look at our gas budget.

Next up in unimportant news, I have discovered zoodles. Apparently I am late to the game but as pasta is still giving me a belly ache post weight loss challenge, it’s been a welcome vehicle for marinara and pesto. I’m a bit crunched for time so I purchase the zoodles ready-made at Trader Joe’s. Speaking of the six week challenge I’m now five weeks post challenge. I measured my arm, chest, tummy, and hips and I’m down 10 inches total! That’s an extra three since the challenge ended. Woohoo!!

Next week I’m going to do a more detailed post on my sister but for now, a mini snap shot. We’re in a very slow and somewhat steady portion of Katie’s recovery. I’ve been setting up prayer times with kate with people from our church. The first time we had six people. The second time we had ten-with only one repeat! It’s so super humbling! We found ourselves praying a lot for Katie’s vocal chords/speech/words/mouth muscles. At one point a friend prayed specifically that kate would speak a sentence that week. She did! My mom was asking her to hold her head up and she said “I can’t”! Hallelujah! Thanks for continuing to pray! If you feel lead to donate toward a new wheelchair that’s specialized for kate, feel free to send money via PayPal to forkatiethewarrior@gmail.com

Thanks!

For Katie the Warrior

Oh, The Things We Should Know

Over the past 14 months I’ve had tons of people come up and ask me how to be prepared for a trauma. They haven’t used these words but it’s usually a mom who has wide eyes and says something like “is everything going okay?” Or “How do you know what to do?”. I’m reading a book called GOLIATH MUST FALL and as I’ve soaked in chapters on anger and anxiety I felt like it was time for a post on being prepared for something unexpected. A complete oxymoron, I know.

  1. Have a complete will/living will. I yelled at my sister about this all the time, we even had a conversation about it the week of her brain injury and she didn’t listen. This made everything harder the first few months! I can’t express this enough, call a lawyer and leave a message TODAY. Ive got a great one if you are in Towson. This has nothing to do with who gets your pearl earrings and everything to do with who gets your kids, what to do if something terrible happens to you, whose in charge of medical decisions, etc.
  2. Get life insurance. Again, I have a few awesome contacts if you need them in Baltimore. We obviously haven’t needed life insurance but we all will at one point or another.
  3. Have the terrible conversations. My sister was super clear with who was supposed to care for her kids in the event of an emergency. Everyone knew what to do. We went out and bought a van and that was that. She believes deeply in Gods sovereignty and didn’t want to be attached to a ventilator for life. Luckily we never had to make that decision but I was prepared.
  4. Listen. This seems silly but it’s true. Katie and I talked daily. I knew it all. I knew how she felt about spanking, school choices, clothing brands, her favorite soaps, etc. I have the privilege of reminding her babies of their mom. I can go on and on about her and answer all the questions they could have. I hold the memories they try to keep. It’s hard to admit but Vera probably doesn’t remember her mom pre-brain injury. She was only one! What she needs from me is to be the storyteller and for me to do “it” (whatever that may be) like Kate would’ve. There’s nothing that brings a smile to those sweet faces like telling a story about the day they were born or how pleased Kate was when they learned to walk or talk or giggle. So listen!
  5. Repair broken relationships. There are a lot of hands in the pot. There are relationships I have that I wish were really healthy before all of this happened because now there is not much time and energy left to try to fix them. Katie needs a well oiled machine in the people that love her most and that’s not always possible if we have our own junk in the way. So repair relationships! Not just in case crappy stuff happens but because you’ll never regret it! It’s time well spent.

Sorry to be a downer. I hope this helps you in some way to be prepared for life!

For Katie the Warrior

The Eye Gaze Device! It’s Here!

Super quick update: we have an eye gaze device!!!

It’s in Katie’s room and is in the very beginning stages of being set up. If you’re not familiar with an eye gaze device, essentially she will use her eye gaze as a mouse. Everything she looks at on the screen will be voiced. She will be able to say things like “I have pain in my back” and “I love you” and “please call Ephram!”. It’s pretty incredible! As she becomes more comfortable with the device more options will be added. Some people use wifi to connect them to home appliances, social media, FaceTime etc. We’re so very excited to start witnessing katie gain back some control of her life!

An enormous THANK YOU is in order. A few months ago I spoke at church about where we are a year after Katie’s brain injury. At the end I shared two things we’d love to purchase for Katie, an eye gaze device and a wheelchair. In such a short time we were able to purchase an eye gaze device for her and we are SO thankful. If you still wanted to donate toward the motorized wheelchair and/or expenses Dan and I have incurred watching the kiddos (buying a new van to fit all the kids, trying to take the kids out to fun places, taking them to lunch, etc!) we would love that! You can just send money via PayPal to forkatiethewarrior@gmail.com. Put in the notes section if it’s for the wheelchair, an outing, etc.

Again THANK YOU! We are incredibly humbled to feel like this verse is being lived out among our community.

Galatians 6:2 “Bear one another’s burdens, and so fulfill the law of Christ.”

For Katie the Warrior

Facing Demons

A few weeks ago a dear friend of mine was camped in labor and delivery for a few days before having her sweet baby at 34 weeks. She was lonely and anxious and if there’s anything I’m good at it this point, it’s sitting in hospitals. So I texted my friend as I was getting into my car to visit and asked where she was.

I knew she was at the University of Maryland where my sister spent about six weeks last year in a coma. For some reason it didn’t make its way through my skull that I may have lots of feelings. Surely it wouldn’t be the same building, UMD is enormous. So I got her text immediately, oh in the building on Greene. Seventh floor.

Ahem.

Golly that sounds familiar, the seventh floor is where the neuro ICU is. Where I spent six weeks taking the trek to visit my sister. Where I cried and prayed and begged God to wake her up from a coma. Where He didn’t wake her up. Where the doctor in the room with all the windows told us global brain damage and “she’s not going to wake up”. Hrm. THAT seventh floor on Greene.

I took a few shaky deep breaths. Gazed at my “warrior” tat on my wrist in Kate’s handwriting. I chanted “I can do hard things” ten times out loud like a lunatic, alone in my minivan. I quickly texted a few in my tribe while I waited at he stop sign at the end of my street (shhh I was essentially pulled over!). Then down I went to the familiar trek downtown.

I went in the same parking garage. I remembered the smells and the feelings and the heat from the underground garage. As I left the garage and gazed at the tall building on Greene I instinctively started praying like I had SO many times before. This time for strength, that I wouldn’t be a sobbing mess by the time I got to my friends room, and for boldness. I decided on my drive down I was going to walk into the neuro icu and ask for our favorite nurse.

In I walked, smiled at the same doorman/security ish guy to the sign-in desk then to the elevators. By this time I was shaky. Up, up, up in the scary glass elevator shaft. The door opened and I forced myself out. I took a deep breath and pushed the doorbell. They let me in and then told me she wasn’t there. I left our favorite nurse a note with my email and asked her to connect if she wanted an update.

Meanwhile, it was time to get my act together. I found my way through the maze to my friend. I sat there listening and talking. My friend was nervous. She lost her second baby 15 months prior and there was some fear in that space. We get deep quick whenever we chat, bonded by intense pain and sorrow. Totally different but so much the same. We talked about how our families have only been one of a bazillion that have walked through the doors of this world-renowned hospital. We knew God as good on all the days before it was our people in those hospital beds. We were certain He was good when it was someone else’s sister clinging to life and someone else’s baby who stopped kicking too soon in his moms tummy. Somehow once it’s our people we question goodness and faithfulness. Not right but so very true. Anyway we talked over the sounds of some poor soul a few beds away puking her guts out. My friend made it to the delivery room, brought her perfect baby home, a happy ending for this chapter of her story.

So I made it. I lived through the elevators and the smells and the parking garage heat. I made it back onto 83 and home in time for church. Praying the whole way for every person in a bed in that hospital that didn’t have loved ones at their feet begging God for
mercy and grace.

Fast forward a few weeks. I got an email from that favorite nurse! We emailed back and forth a few times. I gave her a reasonable update of the last year and Katie’s successes and our sadness at her not being home. In a moment of boldness I asked her if Kate was doing better than she thought she would. Here’s her response:

Thank God I went to visit my friend even though it was hard. Thank God I left a note. Thank God she had a nurse that cared enough to respond. It’s been a slow month or so. We constantly teeter between wondering if kate has plateaued. Then she blows us away with three new things.

Today I’m finding comfort that God has the last word. If I’m stuck in thinking “this is IT?” I’m given a voice saying that she’s doing great.

Praying friends out there-please pray for more progress! More connection, more healing, less pain.

For Katie the Warrior

Almost a Year

Ive been quiet around here lately as I’ve felt the urge to listen and be still. In April we spent a wonderful week in Florida enjoying the sunshine with the kiddos. We were down there for a family wedding but decided to extend the trip!


It was just what we needed.

Before we knew it, it was Judah’s birthday, Mother’s Day and my 30th birthday. Lots of celebrating!

It’s all quieted down except for a 24 hour fever this week that snatched Lillian out of nowhere. I kept asking my niece and nephew to try to give her space but I’d turn around and they’d be practically on top of her. It took my breath away when I realized what was going on.


Their mommy has been “sick” for almost a year. When they visit her we urge them to sit close, to love on her, to let her smell their sweet heads. I was shocked when I realized what was happening in their minds with Lillian being sick. They wanted to be near her, to be gentle and use soft voices. They all sat down and colored around her just like they do with Katie. Cue my heart breaking into a thousand pieces.

This year has changed all of us. I’m somehow less of a germaphobe because no childhood cold or virus seems bad compared to the last year. At the same time if my kids seem weird I immediately wonder if they have some atrocious neurological disease that will snatch them away from me. We live in the reality of both somehow but still keep chugging along.

A few things about Katie’s progress the last few months are worth mentioning. She continues to say “hi”, “yeah”, “no” and once said “Aaaa” when I asked her to say “ash”. We are so stinking blown away we can barely sit still while we’re there. We take turns staring at her in awe.

She’s doing awesome without the trach. Her neck is taking its time to heal but she is a rockstar at breathing completely on her own.

She’s written several words. Mostly names. Sometimes it’s because we ask her to but other times she starts on her own. I brought Lillian in the other day and she wrote “Lillian” unprovoked. It’s incredible. Lillian felt so loved. She just kept telling Katie, “I love you aunt Katie, we pray for you every night in my bed. Gods going to heal you”. Gulp.

So next week makes a year. I don’t know what that will look like. Tears shed for sure, but also I think we’ll celebrate. The Lord keeps spreading the seas for her to walk through. So much in her body is working while so much is left to mend. Please keep praying. It’s working.

We are working on a few tangible ways you can serve our family moving forward if you’d like. Please stay tuned for a few links and ideas now that the summer is here.

For Katie the Warrior

Daughter of the King above all else

I’m having all my **feelings** again. My sister has had some great progress the last few weeks. She got her trach out. I could write a whole post about that! We were told several months ago that it wouldn’t happen. Crushed vocal chords and no lung strength and God intervened.

Then a few days ago she WROTE “love”. Then “Vera”. (Vera was sitting with her, coloring). It’s crazy because there are SO many things she can’t do. If I asked her to scratch her chin she couldn’t. BUT SHES WRITING.

The most shocking thing is during a massage the other day she said “no” out loud when a particularly sensitive muscle was being worked on. Eleven months without a word and then all of the sudden, she spoke!

I was overwhelmed with gratitude. I almost felt myself praying “God this is so cool it’s worth not having the instant miraculous healing. We get to be along for the ride.” A small percentage of myself may believe that if this was in a vacuum. But it’s not! She’s a mommy. Sob.

The hardest part of the last 11 months has been her absence in that role. Her children ache for her restoration. We talk about it daily, then we pray together for it, then we share memories and ask questions and we miss her together. I can try my hardest to be a stand in but I know kate and she is torn apart being away. Her kids and husband are devastated by her absence in the day to day.

She’s still a mom. She’s a mom because two years ago she sat me down and made me promise to watch her babies if anything ever happened to her. She’s a mom when she holds it together while they visit. She’s a mom as she prays in her head for them.  She was a mom when the first word she ever wrote again was “love” in the presence of her squishy two-year-old girl baby.

Mother’s Day brings mixed emotions for most. As I get older I have so many friends that have miscarried, others are single moms, still others are having trouble conceiving. We’ve all had a picture of how life was supposed to be when we grew up and I don’t know anyone who is living it out. It’s not as easy as the pictures we drew as kids.

If there is one thing I’m thankful for in the past eleven months it’s a shift in focus. Somehow God keeps reminding me to walk through this life with my eyes on eternity.

I was reading Psalm 91:9-14 tonight.

“9 If you say, “The Lord is my refuge,” and you make the Most High your dwelling,

10 no harm will overtake you,no disaster will come near your tent.

11 For he will command his angels concerning you to guard you in all your ways;

12 they will lift you up in their hands, so that you will not strike your foot against a stone.

13 You will tread on the lion and the cobra; you will trample the great lion and the serpent.

14 “Because he[a] loves me,” says the Lord, “I will rescue him; I will protect him, for he acknowledges my name.”

Now I am no theologian but when I read this through the lense of last years frame of reference I was pissed. I could cross it out and write in a big sharpie, “WHAT ABOUT KATIE???”.

Thankfully I’m this years Ashley. “No harm overtaking” read through the lense of eternity is quite different. Nobody can take forever in a redeemed body away from her. Period. She’s promised a forever. “For he will command his angels concerning you to guard you in all your ways”. When I read that in light of eternity I think of Katie’s mind, her hope, her faith being guarded. The list goes on.

Don’t get me wrong. I pray daily for katie to be redeemed and restored now. I beg God to miraculously heal her as I sit next to her. It hasn’t happened yet. I truly believe she will continue healing but even if it all stopped today it’s not the end of her story. Mom may be one of her favorite roles on earth but it will continue to pale in comparison to Daughter of the King.

This holiday can bring a world of hurt, it has caused some serious tears the last several days as I continue to mourn the last eleven months and all Katie is missing. But we don’t have to focus on today and what was supposed to be and isn’t. We can focus on what is and what will be. 
Photo cred: Arpasi Photography

For Katie the Warrior

The World Gets Small

I’ve been crying all day. A holiday is coming this weekend and it brings so many emotions. I love holidays; we always do holidays big with family and friends and celebrating. As I’ve said before celebrating in the midst of sorrow sometimes knocks the wind out of you.

This week my sister had an operation and each time she sees another doctor we are given a more clear picture of current pain she has. Again, the wind gets knocked out.

This weekend is Lillian’s fourth birthday and all I can think about is Katie carrying Lillian around my house on her third birthday party last year. I’m reminded of my kids loss as they miss their Aunt Katie, who they’re used to talking to every day. I think of how she knows baby Judah but not toddler Judah. Again, the wind gets knocked right out of me.

Then I think of Easter. I was sitting in my sunroom this morning with a sore throat watching the littles play. I started thinking, ‘if only I could have Jesus AND normal Katie’. That sounded ridiculous in my head. Then I was reminded of a dear friend mourning the loss of her baby. So I thought, ‘okay maybe Jesus, normal katie, and Lucas”. Before I knew it, everyone I know whose hurting was added to the list and the world somehow got smaller. A neighbor, two cousins fighting for their lives with cancer, racism ending, child sex slavery being abolished, nobody in the world in lack of food, shelter, and safety’. The breath kept getting knocked out of me as the world got smaller and smaller. We may not know anyone with the same diagnosis as Kate but we are in the middle of a world ravaged with suffering.

I very quickly saw the entire list fade away as I was reminded of Easter. I get to have all of the things I want because of Easter. I was reminded that my timing is just that, my timing. I was reminded of eternity with restored bodies, fulfilled needs, holy relationships, and unity. I was reminded of Easter because it means that  we get to have it all forever and ever. That this life will pass and we get to live in restoration.

Lillian was telling me the Easter story this week and I asked her if she wanted God to live in her heart. She said “yes!” So I suggested she ask God to live in her heart. “God, get in my heart, amen”. It was hysterical and bossy and oh, so, Lillian but it reminded me of the power we have as Christians. It’s not always in ways  we want it but it’s in good ways. Our lives here are short. They are filled with suffering and joy, glimpses of the miraculous, and breath being knocked out of us.  We have the power to help bring Heaven to earth now but we also get to long for Heaven, with full restoration. That in itself is a joy and even more, is enough. Jesus. Period. Nothing else. He’s enough.

For Katie the Warrior

Katie Lynn-Lent part 4

I’ve missed a week or so of prayer requests but I am ready to catch up. If you’d like to read lent part 3, click here!

1-Kate has had some great trach progress! She has moved onto a cap vs her normal speaking valve. When she’s capped it means she is breathing just like you or I! In recent months she has totally panicked when the cap was placed on her but miraculously she is thriving! She’s up to two hours already! Please pray for MORE!

2-Her precious babies. They are just 2 and 5 and they miss their Mommy desperately. Like all of us they are hurting and confused, impatient and hopeful. They need peace! Please pray for the Lord to be near to them while they’re apart. They are so precious and the hardest thing in the world is watching them ache knowing there isn’t much I can do to help.

3-Kate has a procedure next Wednesday the 12th. Please pray for it to be successful and pain and stress free. We are always quick to tell any new clinicians around kate that she hears and understands them but we still worry about what she may overhear.

4-As always we pray most for Katie to be restored and in the meantime to have hope and a clear vision of her future. For complete protection from here on out and for divine intervention daily.

Thank you so much for your prayers!!

For Katie the Warrior

Lent for Kate Week 3

If you need to catch up, here is last weeks Lenten prayer requests.

Kate had a good week this week. There was a family and staff meeting last Friday and they seem to be super encouraged by her progress and set their sights on way more!

Here are some prayer requests for this week!

  1. Speaking valve continues to go well! Kate is up to 8 hours on it a day and is doing wonderfully! Her speech therapist is starting to give her ice chips this week to see what her mouth does in response. Please pray that it does what it should! We want Kate to be able to eat again one day!
  2. Kate is getting a massage this week to try to help her relieve some tension especially on the right side of her neck. Please pray that this helps! She is in a good bit of pain when she’s on her right side and we desperately want her to have full range of motion.
  3. Kate has to be transported to a few doctors appointments in the coming month. Please pray for safety for her while she travels and peace for her spirit.

Thank you so much for your continued prayers! We fully believe that they are healing Katie.