For Katie the Warrior, None of the Above

Thankful, Thankful

My life is not perfect. Ive been super open with the sorrow of the last two years, especially after my sister’s brain injury. But I have to take a moment to celebrate.

I dropped off my two kids to two schools I love this week. I sat in the car grinning that it all worked out. God provided money where there was no money. He calmed nerves, He moved some mountains, He created a way.

In the midst of living through some circumstances I would never choose, and feeling loss in places I never thought would be deserts, I have to shout with gladness that some of my deepest desires have been fulfilled. Staying home with my kids, sending them to schools who teach them to love and revere God, it is a dream come true.

I will never understand the God who did not intervene how I wanted with my sister, yet still cares deeply about the details and desires of my heart. I can say with confidence that He is near. At the end of the day, thats everything.

I hope you all are having a wonderful first week of school if your lives, like ours, are now on a school calendar. I’m praying for safe kids this year everywhere, and that they know God as near.

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For Katie the Warrior, Uncategorized

Two Fourth of Julys Later

Its been quite a while since I’ve blogged. I started working part time a few months ago and it has taken up my free nap time! Judah has also stopped napping so that has taken up my free nap time even more.

Anyway-like most holidays this one feels weird but for a different reason. It was exactly two years ago that I had a meeting with my sister’s doctors at the Neuro ICU and they told us she had global brain damage and that there was no hope for her waking up or for any meaningful recovery.

What cold, harsh words. I remember thinking I felt like I was in a movie. It was one of those moments in life that changed more of me than I could have anticipated. My life is cut into two parts-before Katie’s brain injury and after. This day was the marker to me even more the day that she went to the ER. It was the day they laid out our future and it wasn’t one I wanted.

I still remember looking at the doctor while he spoke such ugly words to us. He wasn’t warm, or apologetic. He said them like he was diagnosing strep throat. “global brain damage. 24/7 care for life. She wont wake up from the coma.” I couldn’t help but think of our beach trip the week before. Sitting in the sand next to each other, watching our kids play. Drinking wine at night while talking about the future trips we’d take. It was cruel. It still feels cruel. She was stolen from me, from her kids and family. 32 and brain dead.

I was explaining to a new friend the other day why I watch my niece and nephew a few days a week. Its so bizarre to sum the last two years up in a sentence or two. I always mention that Katie wasn’t supposed to wake up, but she did. I explain that she wasn’t supposed to be able to communicate, but that she writes “I love you” every time I see her. She cant walk or scratch an itch, or stand, but she can cry. She can feel things and sometimes thats the worst of all. But she has hope, and we all have hope. She asks to hear worship music. She asks to come to church. She asks to see her family and friends.

She says she’s seen angels, she’s felt the Lord near, she’s had dreams and experienced the miraculous.  She has sat strong while I’ve sobbed over her, while I’ve screamed at the Lord at her bedside. She’s moaned while I’ve been brave. So as much as it felt like a big part of my world was taken away that fourth of July, I’m thankful that the sister bond wont leave. No matter what a doctor says, or the ugly words he speaks over our lives. We still have each other. In new, excruciating, precious ways. I know that I’ll visit Katie, and God is there by her bedside every time.   Countless people have said they visit Kate and see the angels above her head. Its a sacred space in that room, where my kids have learned to pray and where I’ve learned to trust.

I’m so thankful for my sister. That she has risen above the ashes and that she tries like hell to come back to us. I’d take her pain away if I could but in the meantime I’ll be praying that one day soon she’ll tell me she loves me with her words, that if she cries she’ll be able to tell me why, and when I cry she’ll be able to reach up and pat my back. One day!

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For Katie the Warrior

God Coming Near

Another Mothers day is on the verge! What a tricky holiday. Like many days, I marry my excitement and celebration with a sadness at what isn’t quite made whole yet. I was talking to a friend the other day about how I’ve honestly wondered if it would have been more merciful for God to take Katie home sometime over the past two years versus her living in quite a lot of pain and suffering. She has been clear with us in her writing that she doesn’t wish to die. That although she gets to experience the miracle of God coming SO near to her, she’s not ready.

Nothing makes me quite as emotional as when someone preaches on heaven celebrating over us. That picture and idea of all of heaven rejoicing in something on earth brings instant tears to my eyes. Luke 15:7 is often the catalyst of the whole thing…”I tell you that in the same way there will be more rejoicing in heaven over one sinner who repents than over ninety-nine righteous persons who do not need to repent.” I often think of the people at the end of a race, calling out to the runners as they finish. Or as someone walks down the wedding aisle, or across the graduation stage, when they were destined for a wheelchair. The applause. The celebration. You can feel it in your core.

Last year, my sister wasn’t well enough to go to Moms Day at school. It was just a wet, weepy day for me. I wanted her there. I wanted her there for Ephram and Vera. It was a lot. But this year we made it happen!

I showed up to Kate’s rehab facility to see her off before her trip to the preschool.

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Judah is always eager to help push Katie ANYWHERE she may or may not need to go. Every person that knows Katie there was elated. Her GNA did her hair super fancy.

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They had her dressed in a cute outfit. They all stopped by her room to see her off. They wanted to tell her they were excited she was going. They smiled and applauded and told Kate how happy they were for her. You would’ve thought she was going to prom! They are rooting for her. While the angels are applauding for her in heaven, rejoicing in her successes and praying for her recovery, she has a host of people cheering her on where she lives.

When she got to pre-school, Vera was elated.

She could barely stand it she was so happy. When her little friends were staring, or asking why she was in the wheelchair, or just dumbfounded that Veras life looks different, she continued to smile. Full of excitement and PRIDE that her mom was there. It’s enough to make me turn into a puddle.

Dont get me wrong, it was hard. We want “normal” for Vera and Kate. We want conversations with voices and we want Kate to play hide and seek and to get up out of the wheelchair and walk. Thats not the reality yet but in the meantime, what a picture.

Thank goodness I’m not in charge. We would have missed so much. Vera would have missed so much. Katie would have missed so much. Thank goodness the Lord didn’t take her.

Please pray for Kate this weekend! She wanted more than anything to be a mom and I know she wants to be a more active participant in that role. Pray that she feels treasured, because she is! And pray that as we beg the Lord on Katies behalf, that all of heaven would join us.

For Katie the Warrior

A Beautiful Easter, Indeed!

We had a beautiful, full, weepy, Easter.

The weekend was packed with egg hunts, family, worship practice, and church.

Katie came to church for the first time in almost two years! I was praying with her a few months ago and got a picture in my mind of pushing her wheelchair through church on Easter Sunday. I talked with my family and we made it happen!

At the end of the church service, Mark, one of our pastors, took time to welcome Kate, tell her story, and pray over her. Please listen below! I was a sobbing mess (shocking).

Please continue to pray for our Katie! It all matters. Every prayer.

For Katie the Warrior

Katie Keeps Writing!

Its been a crazy couple of weeks. The staff at Katie’s rehabilitation facility had a meeting a few weeks ago and they sat in the room and cried about Katie’s progress. She is writing. The flood gates have opened! She’s not just writing random things. She’s asking questions, explaining symptoms, telling us her feelings. Its insane. The clinicians keep saying its a miracle.

Not only is she writing, she’s answering questions. She’s doing math problems. She’s completing Social work tests with 100% accuracy. Her memory and mind are in tact.

My family has had the flu this week so I facetimed Katie the other day while my mom was with her. She immediately started writing. “Ashley I love you. Love you very much.” So I started asking her questions.

A:”Katie is the Lord still near to you?”

K:”yes”

A:”Does the Lord give you hope?”

K:”yes” “please pray”

I immediately got teary because the biggest, most consistent prayers have been answered. I have been BEGGING God to be near to Katie. I have BEGGED Him to give her hope. I have BEGGED for her to have a way to communicate. So I sat on my side of the screen, teary eyed, and started begging for more. More of all of it. And more of healing that we haven’t yet seen.

Don’t get me wrong, this is far from perfect. We have to place the paper on Katie’s lap. Then we place her hand on the pen. Then we push down on the pen while she writes so it stays consistently on the paper. But she’s telling us her thoughts and feelings and then sharing her hopes for future care. It is nothing short of incredible and nothing short of miraculous.

Over the last twenty months we have prayed and sat and wondered and prayed some more even when it looked like things may never take a positive turn. We’ve encountered the pity smiles while we continued to profess hope in Christ alone as she sat unchanged. The Lord has not left her or forsaken her.

This morning in church we sang the song, In Christ Alone. The last part of the song sent me into an ugly cry as I sang and claimed it for Katie.

“No guilt in life, no fear in death
This is the power of Christ in me
From life’s first cry to final breath
Jesus commands my destiny
No power of hell, no scheme of man
Can ever pluck me from His hand
‘Til He returns or calls me home
Here in the power of Christ I’ll stand”
Please don’t stop praying for our Katie. The Lord is moving and we are so grateful. We want more!

 

For Katie the Warrior

Is She in There?

This is probably the question I get asked most often. It comes in all different varieties but once people learn that my sister has suffered from a brain injury they eventually get to it.

“Is she in there?”, “Does she know you”, “Does she understand whats going on?”

Sometimes the most painful thing is that I have to answer “yes”. Not many people can or would want to imagine not being able to move their bodies much. The fact is tough. It hurts to think about. Something itches and she she can’t scratch it. Something hurts and its hard to communicate. Her foot’s asleep and it’s staying asleep.

A neat thing has been happening the last few months. Katie has begun to write. She needs someone to place the paper and pen in her hand, and to put weight on the pen. She will move the pen to make the letters and motions when she’s ready to start a new letter in a word. Here are some examples from just this week.

When my mom was visiting, Kate’s speech therapist asked her to tell my mom something. She wrote “Mom mall vera” “JCrew Zara”.

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My mom and sister have always been mall lovers. They’ve spent insane amounts of time walking the mall, just looking around. Katie loves JCrew and Zara so it was neat to see her memory working.

Today, one of her favorite visitors, my grandmother, was with her along with Vera and my mom.  Katie had a lot to say! Some of these don’t make sense but only because they were in response to questions.

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Pretty cool for someone who wasn’t supposed to wake up from a coma! Keep on praying!! God is moving!

For Katie the Warrior

A Merry Christmas, Indeed

Oh what a season! We have had highs and lows the last few months with my sister. Talk of a medical plateau, followed by some medication changes, and some improvement. Then some trials all over the place at the same time. Its been a season.

We were told a few months ago that we could begin to be trained to take Katie on outings. This is simultaneously super exciting and a bit scary, and also very expensive. My mom was married a few months ago and it was Katie’s first official non-medical outing! She did great! She was exhausted by the end but we were all thrilled she was in attendance and I’m sure it meant so much to her.

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Christmas Day was her second excursion! We chose a time of day that meant Katie wouldn’t need anything medically while she was out. We were so fortunate to borrow a ramp from a neighbor for Katie’s wheelchair. My mom hired a transport vehicle to get her to my house. She was picked up from the rehab facility at 12:30 and then they picked her up from my house at 3:30.

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I think she loved it! She was sitting in my living room like the 3000 times she had before, watching our kids open gifts and run around like crazy people. It was so healing for all of us to see her in a non-medical setting. To watch her comfortable and unhooked from beeps. To smell my house on her instead of hospital smells. It was magical.

It came to an end, as all good things seem to do. She was whisked out back into the blistery cold. I held her daughter and answered her questions (through sobs) about why mommy was leaving and where she was going. I squeezed her extra tight then let her down to scurry away with her cousins. Their resilience is a lesson to me!

I was reminded of the sermon on Sunday. The scripture says in Matthew 19:27-30

27 Peter answered him, “We have left everything to follow you! What then will there be for us?”

28 Jesus said to them, “Truly I tell you, at the renewal of all things, when the Son of Man sits on his glorious throne, you who have followed me will also sit on twelve thrones, judging the twelve tribes of Israel. 29 And everyone who has left houses or brothers or sisters or father or mother or wife[e] or children or fields for my sake will receive a hundred times as much and will inherit eternal life. 30 But many who are first will be last, and many who are last will be first. (emphasis mine)

I immediately thought of my hurting family. Katie will receive 100x what she has lost on this side of eternity. Vera will receive 100x. Ephram. Katie’s hubs. Our parents. 100x our time, our tears, our sorrow replaced. What a joy! What justice! This great sorrow will not last. Its funny how you can go from feeling like life is so unfair to how love is lavished on us so completely. What a God to be extravagant enough to repay 100x our loss. We are trusting Him with our future. Now and forever. He can handle it.

Dan and I were laying in the basement watching a movie last night after we put the kids to bed. He started asking me lots of questions about the day and my feelings and I stopped him. Usually I want to share ALL OF THE WORDS but my heart had to just sit in it for a while. A while later I started to let little thoughts and feelings seep out.

“Wasn’t it sweet how my grandmother was holding Katie’s hand?” “It was”.

“Wasn’t it sweet how Vera sat in her lap” “Wasn’t it sweet how Nevin kissed her on the forehead” “Wasn’t it great how awake she was the whole time” “Did you see Ephram hug her goodbye?”

These thoughts and musings that came to our lips quickly turned to thanksgiving. Praises. It was a very Merry (and tearful) Christmas, indeed.

If YOU would like to donate toward Katie’s recovery, whether it’s to her monthly massage ($100), toward our very own ramp ($1-2000 AH!) , toward Katie having more excursions ($200 round trip), feel free to use the PayPal email, forkatiethewarrior@gmail.com. We are so very thankful for your generosity over the last 18 months. We feel your prayers, support, and friendship deeply. 

 

For Katie the Warrior

Thankful Thanksgiving

I’m trying really hard to stay thankful this holiday season! The kids and I are talking about what we’re thankful for constantly, I’m trying to delight in the mundane and be totally present.

It is a lot easier to be ungrateful. I want Kate out of the long term care facility. I want her laughing and being a mom and my sister. I want her thriving!

It all comes down to this: I’ve been blessed with a beautiful life and called to actually live it. So I’ll cry and beg God at her feet tomorrow, then I’ll keep living this life. One step in front of the other. Day after day I’ll repeat it, one foot with Kate, one in the world that keeps turning. Thankful that I get to be in both.

If you think of it, pray for my family this Thanksgiving. We’re all walking around with lumps in our throats and I’m trying my hardest to keep it together in front of Kate. This stuff is hard!

For Katie the Warrior, Renovation

Lillian’s Big Girl Room! And a Tear-Worthy Quilt.

For a while Lillian would sob about her walls before bed. She desperately wanted to be surrounded by purple. As someone who delights in beautiful spaces, I couldn’t ignore it! She loves purple so she should get to have a purple room.

Before you think I’m a really awesome mom, she wanted dark purple. Like a purple crayon. Well, I said no. I thought she’d grow out of it, and it would make the room look like a dungeon. So I took Lil to the hardware store and got a few samples. I painted them on cardboard so I could move them around the room for a few days. We ended up with Benjamin Moore’s “winter gray”. It’s a muted purple that really goes with everything. And we both love it!

What do you think of the color?

(Notice the handmade mermaid by the one and only #katielaughlin!) (The framed Lilly Pulitzer bathing suit that Lillian wore at three months old will always be SOMEWHERE. I love it!)

Next up! Judah was given a collection of limited edition Aden and Anias swaddle blankets from my sister. He is a teddy bear lover so didn’t get attached to blankets like Lillian or myself. They were sitting in a drawer taking up space but I couldn’t give them away! Judah had just turned one when my sister sustained her brain injury so I really treasured any memories from that short time.

So I emailed out a few crafty friends and asked for their advice. To make a long story short, my friend Betsy turned them into a quilt/throw blanket and I ADORE it! I’ve snuggled up with it several times already and just love to glance at it as I walk through my house. I’m hoping one day it will live on Judah’s bed but I’m telling you I MAY have told Dan I want to be buried with it. What can I say? I’m attached!

For Katie the Warrior

Proximity Matters

I promised an update! It seems in every aspect of life I’ve been thinking about closeness. I wonder how many of us could better heal with people committed to being near. Physically, emotionally near.

I had all four kids for four days straight this week and closeness at this point has meant I’ve hit my touch threshold. This sweet boy doesn’t like to leave my side. Ever. He’s also been a bit whiny. Can you tell? No more touching! Anyone!

Then Ephram fell today and ran to me to be snuggled. Close. It immediately came to mind again that it matters and I wouldn’t trade the opportunity for anything. This proximity matters for healing-theirs and mine.

So I got to the end(ish) of the week and I’m exhausted but I missed my sister. The second Dan got home from work I went to visit her. Kate seemed agitated when I arrived. She had a doctors appointment today which tends to stress her out. Then a massage which likely made her sore. So I rubbed her wrists, turned on this incredible CD* and tried to get her to relax. Usually she’s laying smack dab in the middle of her bed but today she was to the side a bit. I scooted her over some more, moved her arm and layed down next to her. As I started to quietly sob, listening to the cd, feeling her so close, sitting like we have one billion healthy times before, she fell asleep. Within seconds.

I was so surprised! Neither of us are typically “touchy” people but it seems we both needed it. It allowed me to fall apart and it allowed katie to fall asleep and become peaceful. Again, close. Intimate. Healing.

Something in me was sewn back together laying next to Kate. The familiar feelings, smells, sounds of my sister up close and personal. Praying over her, believing God is near to both she and I. It did something to her too. It quieted her, released her body and mind. It reminded me how much proximity matters. It’s caused me to wonder what areas of my life I’m keeping my distance when healing or maybe restoration would come if I’d just get close. If I’d be near.**

*This CD is incredible. It is essentially someone praying over Kate 24/7 and reminding her of the character of God while we can’t be with her. I would suggest it for anyone who needs ANY kind of healing.

**If you can’t be near but you’d like to donate toward a nice, personalized wheelchair for Kate we’ve set up a PayPal account specifically for her health needs. The email is forkatiethewarrior@gmail.com