Journal

Journal entry by Laurie Kopec

On March 12th, after being away from home for 10 months, I decided it was time to go home.  Rachel has become increasingly independent and Taylor is now working from home, so he is able to help care for their family.  The timing was all in God's perfect plan as it was just the beginning of the coronavirus and it would have been really hard to be away from my husband and home right now.  In one day, I packed up a year of my life and rented a car (not wanting to fly) and drove the thirteen hours home.  I stopped at and ate at a restaurant and stayed in a hotel, not sleeping much the night before and encountered sick people including my waiter who coughed in front of me not covering his mouth!  If you are reading this today the 23rd, please say a prayer I remain well to complete 14 days after my trip.  

I am so proud of Rachel and how she has fought so hard to make the gains she has.  Looking back, I know the hardest thing for her was overcoming the depression that gripped her in the beginning and feeling she had lost so many dreams she had as a wife and mother.  Since then, I have seen her become so strong and have such a positive outlook.  Now, she will never take for granted being able to care for her child by herself, cooking a meal, making bottles and changing Hudson, transferring to various surfaces, even now walking for a period at home every day with the help of her husband spotting her and using her new crutches.  I am fully believing our God will continue healing her and I ask those who are praying to continue!

Taylor has continued to be her rock and was so kind to me while I lived with them.  I can't imagine how hard it was to have his mother in law living with them for such a long time.  He forgave me when I dried several shirts and shrunk them, threw out some old clothes he didn't want me to, and not giving them privacy 'trying to be helpful' all with grace.  He truly embodies Christ's love.  I see the sacrifices he makes daily and is so sensitive to Rachel and is a dedicated father to Hudson, having to do so much more than many dads have to do.  Hudson has a huge smile every time he sees his dad and that says it all!

What can I say about Hudson?  He is the light of my heart and I knew from the beginning Rachel needed to focus on getting well, so I tried to fill the gap, dedicating my whole being to making sure he got double hugs, giggles and love, while at the same time making sure Rachel bonded with him daily, even when all we could to was lay him on top of her at times.  She didn't see what I saw, as the days went by and they both got stronger, Hudson really saw her, smelled her, loved her.  I will never forget the first time he looked at her with so much love that he only reserved for his mommy.  It was all worth it.  I told Rachel from the very beginning I would not leave her while she still needed me, but the minute she knew she didn't need me, I would go.  Rachel was too kind to come out and tell me she didn't need me, but a mom knows the signs.  So I went.  We both knew it was time and God provided the opening with Taylor being home every day.

And there was my husband Thad.  He has been beyond patient.  He has provided us everything I needed to stay as long as I did.  He stayed home and prayed, visited, provided finances and patience.  He had faith and was independent enough to bear the weight of the situation.  I thank him for waiting until I felt good about coming back home.  It was hard on him, as he was used to me taking care of the home and cooking meals.  I thank my friends that gave him meals and had him for dinner.  It helped more than you know.

Lastly, I thank Ann and Don, Taylor's parents for keeping Hudson in the hotels while Rachel was in the hospitals.  After long days, it was life-giving to be able to sleep restfully at night! We consider you family and we so appreciate you!

Also, our friends that gave in so many ways, by praying, giving financially, cards, meals, gifts, flowers and calls.  To Carolyn and John Cain who were part of this whole story, finding the the best surgeon that performed her surgery and for continuing to pray daily for her, as many others are.  

Mostly for God, for never leaving us during this battle, for all the answered prayer and His enduring love and mercy.
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Journal entry by Rachel Barkley

Many of you have seen videos of my progress on social media, but I thought I'd share an update of the great healing that has happened in the last two months. I started January 2020 very motivated to move forward in independence and mobility-- and have had so many gains since then! I challenged myself to walk everyday in January, and this really helped me to feel confident with using my walker at home.

I also stayed home alone with Hudson for the very first time since he was born. I was able to do get him up and down the stairlift by wearing a Baby Bjorn (even though he is a wiggly guy now!).

I go to physical and occupational therapy 2-3 days a week for 2-3 hours a day, and my fantastic therapists push me every time. And every week I leave therapy with new wins under my belt:
  • Walking with Lofstrand crutches instead of a walker (something I didn't think I'd be able to do this soon)
  • Walking on a treadmill!
  • Leg pressed 110 lbs on the weight machine
  • Felt touch on the back of my left leg and my lower back (previously I felt nothing to the touch)
  • Stand and balance with no hands supporting me for 1 min+ (previously I could only do 10 seconds-- and that was a stretch)
They say that the first two years are the most vital for return of function for a spinal cord injury, and I am now eight months into recovery. We are so thankful for every little return in sensation or strength that I get back.

Please pray that insurance approves unlimited visits to therapy. Right now, they only allow 30 for the year (which is only 15 weeks at the rate I'm going).

Spiritually, this passages from Romans 5 in the Message really spoke to what the Lord has been doing:

3-5 There’s more to come: We continue to shout our praise even when we’re hemmed in with troubles, because we know how troubles can develop passionate patience in us, and how that patience in turn forges the tempered steel of virtue, keeping us alert for whatever God will do next. In alert expectancy such as this, we’re never left feeling shortchanged. Quite the contrary—we can’t round up enough containers to hold everything God generously pours into our lives through the Holy Spirit!

Journal entry by Rachel Barkley

This Christmas and New Year season has been a celebration of being 6 months past some of our darkest days. Six months ago, we didn't know how a risky surgery would go. Six months ago, I almost died from a pulmonary embolism. Six months ago, I spent an entire month unable to get out of bed and barely able to hold our baby. It also marks 3 months at home.

Today, I can lift 20-pound Hudson over my head, I can zip his jammies with my right hand, I can transfer in and out of our car, I can stand up pretty easily, and I am doing some walking with a walker without any assistance. Just this morning, I lifted Hudson into his high chair and gave him breakfast. Then, I pushed myself out of the wheelchair and stood to grab a bowl from the high shelf in the kitchen cabinet for my cereal.

We recently reflected on all the things that seemed impossible while I was at Magee-- walking with a walker, easily transferring from my wheelchair to other chairs or the car, standing without any assistance.

This advent, this verse stuck with me from Mary's interaction with the angel who told her she was to conceive the Savior of the world:

And Mary said to the angel, “How will this be, since I am a virgin?”.... And the angel answered her... For nothing will be impossible with God.”  And Mary said, “Behold, I am the servant of the Lord; let it be to me according to your word.” Luke 4: 34-38

Taylor and I have started a daily ritual where I end the day by standing into his arms and he helps me balance while we just embrace each other. I can't tell you how great this feels. Every day I am thankful for the man, husband, and father he is.

We were both glad to have a wonderful season of family time. It was our first time hosting both holidays-- the Barkleys for Thanksgiving and the Kopecs for Christmas. Hudson made both so sweet. He just started to crawl, so we are fixing to have our hands full! My mom Laurie is still living with us, and we are so grateful for the help she gives us and all the love Hudson receives. She drives me to and from therapy three days a week while juggling house and baby care with us.

At therapy, I am using technology called the "Bioness" to stimulate my muscles and aid my right leg's steps. My January goal is to walk with the walker a few steps every single day. Please join us in praying that my hamstring and glutes wake up, that my balance returns, and that "proprioception" (the ability to tell where your limbs are in space) returns in my legs. I would also appreciate prayers for my bladder and bowel function to return to normal.

Thank YOU for helping us through these hard six months! We haven't had to worry about finances and food the whole time. And your encouragement and prayers are felt. May your New Year be blessed! 

Journal entry by Rachel Barkley

Sometimes recovery feels like watching grass grow. You don't feel like you're making much progress day-to-day, then one day you look out the window and the grass is knee-high! That is how this week felt.

Last week, we attended the ordination ceremony of our dear friend, and the church service was intimate and inspiring. At the end, pastors and friends spontaneously gathered around to pray for my healing. I felt so encouraged by what God was doing that night and a confidence that I will be healed. Now I don't know what kind of healing, the timing of my healing, or even on what side of heaven I will be healed. Just that our God is the healer.

The spiritual boost led to a physical boost! My dad visited and got to come cheer me on in therapy, and he got to witness big steps. When I left inpatient therapy at Magee almost two months ago, I couldn't really step my right leg at all without assistance. On Monday, I walked with the assistance of parallel bars and no aid on my legs. You can watch the video here on Facebook.

We also tried something new in therapy-- the exoskeleton. It is basically a robot suit that walks my legs at a more normal speed and gait. Going through this motion helped my legs remember what they're supposed to do, and I stepped faster when I tried walking with a walker afterwards.

Then, at therapy on Wednesday, I had a big breakthrough! I walked almost 100 feet using a walker!! This was a feat I thought would take months to achieve. 

Please pray that my nerves continue to regenerate, that signals get through my spinal cord, that I regain strength and don't lose too much muscle tone in my legs, and that I continue to regain core strength so that my balance improves.

Journal entry by Grace Hayes

From Taylor and Rachel:

----------------

Thank you so much for helping us meet our fundraising goal! Thanks to you we aren’t worried about paying for medical bills or the accessibility of our house. See our new door and ramp in the background of our picture, all made possible by YOU! We both felt like each goal was such a stretch and then you all kept blowing by them. Your gifts are tangible examples of God’s generosity. Overflowing. Whenever your gifts come to mind, it is an incredible encouragement. They pick us up.
 
You helped us: 
  • Install a ramp into the basement
  • Install a new door into the basement
  • Make the basement bathroom completely accessible
  • Widen all the basement doorways
  • Insulate the wall of the room that’s now the nursery
  • Get an accessible crib
  • Install a stair lift
  • Modify the staircase and landings for the stair lift
  • Buy a wheel chair and other medical equipment
  • Pay medical bills
  • Pay for meals and housing while in the hospital
  • Acquire a bike for Rachel to use at home so she can exercise her legs
And you’ve given in time and meals too! Truly, as we’ve said before, we are blown away and overwhelmed by your generosity. You’ve shown us what it means and looks like to help others. We’ll take these lessons and use them the rest of our lives. Thank you!

Journal entry by Rachel Barkley

Yesterday, Taylor and I went to Johns Hopkins to visit the great Dr. Sciubba for my first follow up since leaving Baltimore. It has been 4 months since he resected the tumor, and I've been dealing with fears that it would come back. In my anxious mind, the tumor felt like the monster from Stranger Things-- they think they killed it in Season 1, but they fear it is coming back from the Upside Down in Season 2 and 3. But in happy news, the MRI was all clear! I came home with the doxology playing in my head. "Praise God from whom all blessings flow."

Dr. Sciubba also was pleasantly surprised by my progress. When he saw my right leg's movement, he said he did not expect this until at least 8 months out based on how I left the hospital. It is a good sign of recovery! 

Last week I started an intensive day rehab program at National Rehab Hospital in NW DC. I do three hours of therapy for 2-3 days a week, and will be in it for 6 months to 1 year. I already feel stronger since leaving Magee almost a month ago.

For the days I don't have therapy, we ordered a FES stim bike that will allow me to exercise. This is  important to keep my muscles from atrophying and preventing spasms in my legs. The stimulation will hopefully help my brain connect to my muscles as well. We are hoping that insurance covers this, as it is a large cost.

I am so thankful for the help we've received from our moms and our friends that allow me to focus on therapy at this critical time. It is a full-time job and we couldn't do it without you!

Oh-- and our sweet Hudson Taylor is 5 months old!! Time really does fly.

Journal entry by Laurie Kopec

I have been by Rachel's side since she gave birth, save the week right after birth.  I am leaving tomorrow for the first time since all this started.  God has given me a window to be with her family and I can't believe what a blessing it has been to me.  I get to snuggle with Hudson every day and chat with Rachel and Taylor and be part of their lives.  I never thought I would be such an integral part of their lives again.  Yes, the schedule is grueling, and yes I work hard every day but I would not want to trade this time for anything.  I laugh to myself when they are tired and the baby's been screaming, I'll ask, do you need a break?  They hand Hudson over and even though I am tired, I get to play and hug him for as long as I'm allowed.  If I went home today, I could not have a better gift than this time spent.  The things that used to be important to me just aren't any more.  There will be a time again when I can focus on 'me'.  Next week I will paint at a workshop all week and love every minute, but I will miss them.  If I made Rachel's life a little easier then this time has been worthwhile.  

Journal entry by Rachel Barkley

We’ve been home just over two weeks now and have started to figure out our new rhythms. 

 

Today was my last day of in-home therapy, and I had a big win on Wednesday. This physical therapist really challenged me to push myself, and I took two big steps with my right leg using a walker! This was the most I’ve seen out of my right leg. 

 

My therapist kept telling me to stop being afraid and just do it. Recently, a Barkley family friend also gave me a word from the Lord that I need to reject a spirit fear: “For God has not given us a spirit of fear and timidity, but of power, love, and self-discipline.” 2 Timothy 1:7

I realized that during most of my therapy sessions I am almost always consumed by a fear of falling. I won’t walk again if I’m afraid to even take a step!

 

Another fear I’ve had is my follow-up MRI. Both of actually getting the MRI, since the last time was under traumatic circumstances, and of seeing the results. I had got the MRI on Wednesday and didn’t experience any anxiety while in it! Please pray that the results show that the tumor is still defeated. 

 

On Monday I’ll start a day rehab program at National Rehab Hospital here in DC. It will be more intense, and I’m excited to get back at it and work hard. 

 

There have been lots of frustrations along the way at home. Every day things like transportation and getting my pants on are just more difficult now. And sometimes I get discouraged that I don’t get a break from the relentlessness of the everyday. 

 

But there are some darn beautiful things in the everyday, too. Hudson’s precious smile when he wakes up in the morning. Taylor’s kiss when he gets home from work. Walks with Nana to the park. Cooking in my kitchen. 

 

Thanks for praying and loving on us since we’ve been home. We’ve especially loved all the meal deliveries! 

Journal entry by Rachel Barkley

I'm writing this from Capitol Hill! On June 11, we went to the emergency room thinking we'd back in a day or two. I couldn't have imagined that it would be 106 days until I was back home. Obviously, this isn't how I expected to spend my first summer of my 30s and as a mom.

Leaving Magee was bittersweet. The nurses, techs, therapists, doctors and staff had become friends and cheerleaders by the end. Not to mention the security of living in a hospital should anything go wrong. It is also the place where I saw my first toe wiggle, kicked my leg, held Hudson above my head, and stood up. I will miss the Magee miracle workers! The next steps in therapy are in-home for a few weeks and then outpatient three days per week in DC.

Taylor and I hopped in a wheelchair van on Wednesday, and my family and friend Kala packed up Hudson and our things and drove home. We pulled into the back alley and I wheeled out to the new entrance in the basement... and started sobbing with happiness immediately. It was also the first time I got to see the gorgeous newly renovated bathroom (thanks to your donations that made it possible!). The guys worked hard and proved that accessible accommodations can also be pretty. 

The first night back with my guys sleeping under the same roof was so wonderful. You don't know how great being woken up by your baby's cries is until you've spent 106 nights away-- although, Hud is an exceptional sleeper thanks to Grammy Ann's training.

In the midst of the joy, I also have experienced some mourning and some fears. On our first "walk" to the park, I mourned my many runs there. Back in our house, I mourned not being able to get upstairs. I am mourning not being able to pop out of bed and make my family breakfast. But I know all of this will get better with time as I learn how to operate and I gain back more mobility. I fear being a burden to everyone I love (although I know they would never ever say that!), and I fear the tumor or other health complications coming back. It is a daily exercise in "Casting my cares upon Jesus, because he cares for me." 1 Peter 5:7 

We are holding onto hope that God will provide healing. And in this journey I take heart that one day all our physical suffering-- all wheelchairs and tumors-- will be checked at heaven's gate when we are all ultimately whole and healed!

This whole transition and next phase are made possible by my amazing family. You all know that Taylor is an incredible man and I am most blessed to be his wife. My mom is living with us for a time to help with me and Hudson. She's super mom and I look forward to this sweet time as moms together. My dad and brother came and helped with the move- including building me a new closet in the basement! Ann helped prepare and clean our house for the big return. 

Lastly, thank you from the bottom of my heart to our community of support! The team of friends who helped move furniture, stock the house with food and flowers, are bringing us meals, and have donated more than $60,000!! You all are cherished and your generosity blows our minds.

Thank you, thank you, thank you!! 

Journal entry by Grace Hayes

Hi all — Hannah Wegmann has set up a meal train plan via Take Them A Meal. A note from Hannah:

——————————————————————

As the Barkley family adjusts to life, not only with a baby but with Rachel's ongoing recovery process, we want to shower them with meals and support.

Please text Rachel to coordinate delivery (352-362-2091).

From September 25-29, meals should be for 5 adults.
Meals after September 25 will be for 3 adults.

If you can't bring a meal, consider sending UberEats via Taylor's email: tbark11@gmail.com

Let's keep the Barkley's covered in meals and prayer!
-Hannah

Sign up for a meal delivery here: https://takethemameal.com/meals.php?t=UEKU1492&v=72b20cda81 />
——————————————————————

Journal entry by Taylor Barkley

We had our healthy baby boy, Hudson, on May 21. He’s gaining weight well and strong!

During the third trimester, Rachel experienced a bit of wobble and weakness in her right leg. Common during pregnancy! For three years prior she had terrible neck/shoulder pain that was relieved about a year ago by chiropractic and physical therapy. Then during pushing to get Hudson into this world, her neck and shoulder pain returned full force. Her right leg was also weak and didn’t seem to be getting better. But again we and doctors chalked this up to pregnancy side effects.

It wasn’t until Tuesday morning June 11 we decided to take Rachel to the ER because she had lost 90% of the movement and strength in her right leg. For her leg there has never been any pain or numbness and full feeling remains. She just couldn’t move it. She had a couple other weird symptoms as well. The doctors in the ER and hospital treated these symptoms seriously, ordering a CT scan and a lower back MRI. Both came back clear. A brain MRI was ordered to rule other causes out. Due to her neck and shoulder pain and a prior doctor’s recommendation we requested an upper spine MRI just to get at the cause of her pain. 

The results the next day were unexpected. A “lesion” was revealed in her upper spinal cord continuing down to the middle of her back. Another MRI had to be ordered to get the full picture but due to chemicals required for good imaging we had to wait 24 hours with this vague, scary news.

Today the neurosurgeon returned with a clearer picture of the road ahead. The tumor is unusually large, especially for a female her age. He thinks the tumor is either an ependymona or an astrocytomas. He won’t know for sure until Rachel’s spine is opened up for surgery. If it’s an ependymona then the extraction is relatively easier. If it’s an astrocytoma, they would take out less since that type tends to bond with the spinal cord tissue. Either way the surgery is extremely risky with a chance Rachel won’t regain strength in her legs. There’s even the possibility of paralysis. After the surgery there is a long road of physical therapy, potential chemotherapy and/or radiation treatment. 

It’s highly likely that Rachel will have surgery next week. We are consulting with other doctors and specialists in order to get the best care in the world for Rachel. 

We so appreciate the love and support from everyone. It truly is overwhelming, in a good way. e love the messages and emails event if we can’t respond. Just getting a text saying that you are thinking about us is encouraging. 

God walks with us. Family and friends walk with us. The story isn’t over, this is just a hard part.

We will slowly be adding ways to help out to the site. There’s a meal plan link in Ways to Help. Please email Grace Hayes if you would like to visit Rachel: gracemontgomeryhayes@gmail.com
Rachel’s Story

Site created on June 14, 2019

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