Category: 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.

KevinandRobin-130(Photo Credit Arpasi Photography)

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. 

 

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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!

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

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!

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.”

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.