I (Erica) took a little trip, two weeks ago, to get some downtime for myself.
It was overdue.Robin and I talked about me leaving for a few days, to which I said, “I need to get out of here and not have anyone ask me for anything!”, to which he said, “You don’t have to act like you don’t like us!”
I LOVE my family.They are MY people, they see me at my worst and love me still.We trust each other, celebrate each other, cry with each other….but we also need our time alone.
So, I concocted a plan on Saturday, made reservations at an air b-n-b for Monday night, and took off driving, to the beautiful state of New Mexico.
I didn’t have much of a plan except for leaving town, eating, driving, and sleeping.I arrived in the quaint town of Taos, NM Monday night just as the sun was setting on the mesa.
It was beautiful. ..The cool breeze… dry mountain air…and slow pace.
I woke up Tuesday morning and decided to take a little road trip to see our first home we ever purchased (in Questa – 20 miles north of Taos).It was so sweet and nostalgic taking a drive down memory lane.Robin and I spent our first couple of years as newlyweds in the mountains, teaching ski school, working desk jobs, being a line cook, detailing cars, all while eating pizza and playing video games.It was a magical time for us.
That afternoon I headed up to Taos Ski Valley to eat a burger at Tim’s, and hike up to Williams Lake.
The weather was perfect and the mountains were stunning.I got my belly full and started my short 2 mile hike up the trail.
It was about the time I got to the trailhead and saw the signs “Do NOT FEED the wildlife”, which indicated that there may be bear, mountain lions, or other small animals, that I was reminded of my irrational fear of being eaten by a bear.
Now, you may laugh at this, but it is true.I am a healing hypochondriac, as well as someone who has an overactive imagination about animals desiring to attack me…and then eat me.
Meanwhile on Instagram, with no-one able to read my internal thoughts, and only able to see the beautiful, fun pictures I was posting. I was having discussions with myself about how I would fight off any animal that may come at me with my pepper spray and banging my metal water bottle (likely, while running downhill screaming).I am sure the pictures made it look like I didn’t have a care in the world!
Here I am hiking up the trail, and with each person I pass I am so thankful that not one is telling me there is a bear up ahead! (or running downhill screaming that they are being chased by a bear.)This was encouraging!
About half way up the trail I realize that I have not quite acclimated to the altitude. This “quick” two mile hike was going to take longer, and require more effort than I imagined.I would hike a bit, then stop and take a drink of water and catch my breath. I pretended that I wasn’t about to pass out, as friendly hikers walked by.
As the hike went on, the number of hikers was decreasing and I kept thinking I was almost to the lake. Maybe I would actually make it! So I began to pray “Lord, just let me see one more person (bear bait)”, and sure enough, here would come one or two more people!
Finally, as I was sure I was almost to the lake, I saw two people coming toward me and asked them casually, “The lake isn’t too much farther, is it?” (PLEASE, LORD, let it be close).They said “It’s only about 10-15 minutes up ahead”….. OH!GREAT!Just 10-15 minutes MORE of being potential bear bait!
Throughout my hike I would constantly speak truth to my fear, by stating that “bear attacks are rare…mountain lion attacks are rare”, “animals are more afraid of us, than we are of them”, “Jennifer Pharr -Davis has hiked thousands and thousands of miles ALONE and not been attacked, so surely I will be fine!”
I finally made it to the lake, admiring the scenery and taking a quick selfie, then saying to myself, “Did that! Check!And, I didn’t even see one bear!… yet…”
I stood for a few minutes taking in the beauty, then spotted a family hiking and thought, “OK, I don’t want to be behind them on the trail, so I will head back down, plus, they will make good bear bait!” (horrible, I know)
As I headed back down the mountain, I was reminded of the truth of my faith journey:The truth that if this life is not the end, then a bear attacking me and potentially ending my life… is not the end.
In the Bible, there are so many stories of God’s people forgetting what he has done for them, and what God promises he will do.In Exodus 11:7, God tells of delivering his people from slavery. He went so far as to silence every dog in Egypt.This kept coming to mind as I was walking.
God is concerned about every detail of our life.
In my morning devotional by Paul David Tripp, “New Morning Mercies”, he says, “In the life of the believer, fear of weakness amounts to God-forgetfulness.Timidity is a failure to remember the promises of the gospel…Giving way to temptation is overlooking the empowering presence of the Holy Spirit.”
It hit me like a ton of bricks.How powerful is God! His presence transforms our lives!Each time I was afraid on my hike, I would speak truth, but it wasn’t until I began the hike down, that the gospel began to settle in my heart.
As I hiked down the trail, I took my time and really focused on the truth that God was here in that moment with me, that he was indeed over every moment, and that I could rest in THAT.
I got almost all the way down the mountain and stopped at a beautiful roaring stream.
I decided to sit down and pull out my book to read for a bit.It was such a blissfully peaceful moment.
My fears were laid down in trust, and the peace came to just enjoy what all was surrounding me.
After reading for a bit, I packed up and headed back to my quiet air b-n-b, exhausted and ready for bed.
Ceiling at my BNB!
This day for me was so good.It was a reminder to not live life bound by fear of the “what if’s”, and to rest in the gospel…pure and simple.
If I had listened to the fear in my mind, I never would have left the comfort of my vehicle or a safe restaurant to enjoy the nature that is so deeply renewing for me.
What is it that you need to say “no” to, to be able to say “yes” to peace and joy? I would love to hear from you!
Wow! It has been a busy few days. On Friday, USA Today released an article about our family and we have been overwhelmed by the support. Of course we were surprised and honored that Sonja Haller reached out to us and wanted to write a piece on our daughter’s life. She did an incredible job covering so many years of ups and downs. We had over 12,000 hits on our blog that day!
As a result, we have been connected to so many new “friends”. Thanks to everyone who signed up for our blog updates! It has been so encouraging to read your emails about your own journey/kids/special needs/faith. Please keep in touch. If you haven’t connected directly, we would love to hear from you! Send us a email and tell us about your family!
We wanted you to see an update pic of our family. If you did the math and looked at the pics in the article, you probably realized that our kids are way too young in those pics. 🙂 Check out this pic from Thursday night! Dore Pope Photography just captured this one (and we love it).
If you haven’t followed us on social media, then we would love to connect with you there. That is probably the best way to keep track of our family. We post quite a bit on Instagram and Facebook.
Today marks 15 days that we have been here in the hospital. I (Erica) honestly could not have imagined that we would be here this long. I have also realized that it is rare that you have any idea how long an unexpected trip to the hospital will last. There is still no clear escape plan, but I am preparing my Jedi mind tricks to use on the doctors. Be looking for a post about going home soon, poop or no poop!
It seems like the longer we are here, the more I find myself riding the emotional rollercoaster of feeling encouraged, then plummeting to discouragement.
I have had so many thoughts, but not put a single one down on paper.
The fresh winds of hope have come over the past couple of weeks, followed by thick waves of discouragement.
This past Wednesday I had come home after being relieved by my precious mother-in-law. I had been up at the hospital for two days and was exhausted. When I got home we had to deal with some other family issues, which was honestly the last thing we needed. I had a meltdown and was just feeling like it was all too much. Robin and I dropped the boys off at youth that evening and went to dinner, then Robin left to go up to the hospital. He traded out with his mom and stayed the night.
As I was getting ready for bed, I just wanted to lay down and sleep, I was exhausted and the tears were overflowing.
On this journey it is hard to let go and let others in. Not because people haven’t offered, but because as mama and poppa, we want to know what’s going on with our girl and make sure that we keep her on the fastest track to breaking free of the hospital.
In my moment of tears and overwhelm, I felt God speak to my heart and say “you need to let people help you. Especially ones that you love and trust”.
I slept well that night, and woke up feeling less overwhelmed and ready to reach out for help.
I texted Robin’s cousin Krystal, who had offered the week before to come and stay for an evening or overnight, if we would allow her to.
Honestly, in that moment she offered, I genuinely appreciated it, but knew that it would be hard for me to let go and allow someone in to help. The ask is always so big.
I texted her Thursday morning and asked if she would be available to stay with Kennady that evening, or overnight. She replied “Absolutely! Is it overnight? Or just the evening?”
(Note here:: This is an amazing reply! It is what everyone wants when they are asking for help.
Robin stayed until Krystal arrived that evening (when she brought a whole house full of barbecue from Holy Smokes for us – D-lish).
Robin called to say that he had given her the rundown and was headed home.
I had been doing a few things with the boys and finally sat down at our kitchen table to look at social media.
I could not have been prepared for the picture I saw when I opened IG.
The relief, the heartache that was buried deep, the gratefulness, the joy, the peace, it all came flooding in. I literally started sobbing and laid my phone down.
The gratefulness that I could rest. The absolute joy that my girl was with someone that wasn’t afraid of her differences, but loved her and celebrated her. My heart felt like it would burst.
It also spoke to a deep grief that I had worked through years ago. The grief that my daughter was not able to participate in sleepovers or family cousin events. When I saw the words “she and I are both pretty excited to announce our first “Kennady sleepover”. Sheesh.
My girl, bing included and loved!! It still brings tears to my eyes.
What an unexpected gift in such a big way. My heart was so filled. I am so thankful God so gently spoke to my heart. I am thankful I got my ask out of the way. I am thankful for the wonderful gift of support and love our family has given us.
Trying to diagnose Kennady’s sicknesses is so hard because she can’t actually tell us what is going on. Over the years, we have learned a lot from her non-verbal communication: facial expressions, emotions, body language, etc. She communicates so much through laughing, crying and her eyes. You can look into her eyes and get a pretty good picture of what is going on inside. A couple of weeks ago, she started having coughing spells that would become intense. They would come and go and often be accompanied with throwing up. Honestly, we have become used to a lot of episodes like this so it is tough to know when it is a sign of something more significant. They just kept coming and escalating. One of our nurses pushed us to go ahead and take her into the doctor and that turned out to be a really good decision.
I (Robin) had taken a few days off and gone on a mini-sabbatical out to Big Bend National Park in west Texas (7.5 hours away). I was really excited about getting away from civilization and cell phone coverage. I took my kayak and mountain bike and was ready to really relax and explore (at the same time). I arrived Friday night, had a bite to eat, set up a tent, and took in an incredible west Texas desert sunset. The next day I took my kayak to the Santa Elena Canyon on the Rio Grande for kayaking and fishing. What an incredible view. I paddled way up stream away from people and enjoyed the tranquility of babbling water and warm sunshine.
I actually got out of the boat on the Mexican side (don’t tell anyone) for some international travel. I was there for like 5 minutes and then got back in the boat for a nice float back to the truck. I slowly made my way back to camp through the gorgeous Chisos Mountains, ate a nice dinner with some PromiseLand folks that now live out there, and then took in another sunset. Just before bed, I got a call from Erica. She had taken Kennady to the ER.
Erica and I talked through the whole situation. We had no idea what was going on. The doctors were going to do some tests and scans and try to diagnose the situation. I was troubled. What should I do? Drive back? Erica told me to hang on and wait for the test results. So, I went to bed. Around 4am I woke up and checked my phone. Erica had called a couple times and sent messages. The phone signal in Big Bend is terrible which is one of the main reasons I wanted to go there. In this case, it was quite frustrating. She said that the doctor determined that Kennady’s bowels were not working and there was a good chance that she would need surgery. However, the doctor said that there was a possibility surgery wasn’t needed if the bowels would start working on their own. Erica is so amazing. She said, “We don’t need you here right now. Go on a mountain bike ride first thing in the morning and then come back.” So, that is what I did.
I got back to Austin on Sunday evening around 9:30pm and drove straight to Dell Children’s hospital. We talked a bit and then Erica gathered her things to go home. On long stays like this at the hospital we usually take 24 hour shifts. Thankfully, our boys were with my parents and are actually old enough to stay on their own if we need them to. (they really enjoy being alone at the house without parents there) We have several things that make these stays work: eat good, exercise, take a walk in the woods, sleep in, rest, repeat. We try to get work wedged in when we can.
Once we got into a hospital room, we started the journey towards recovery. The doctors really wanted to avoid surgery because it is really invasive and could have complications. There was a chance that things could start working again if the small intestines had an ileus (where they simply ‘fall asleep’). However, if there was an actual blockage, surgery would be required. There was no real way of knowing so we had to simply wait it out. By Wednesday morning, the doctors were not seeing the progress needed and decided to go forward with the surgery. Things went quickly from there. Within a couple of hours she was in pre-op. Doctors and nurses were coming and going. We were signing all kinds of papers. They wheeled her back and then mom and dad waited patiently for 2 or 3 hours. They finally called us back to talk with the surgeon. Such a weird feeling. They take you to a little room with nothing on the walls except a small dry erase board. There are a couple of chairs. It looks sort of like an interrogation room. They always call you back before the surgeon is done so you have to wait…again. What will the surgeon say? What went good? What went bad?
He finally walked in and said that things went really well. There was one significant blockage were scar tissue from a previous surgery had created a kink in her intestines. While in there he saw that her appendix did not look healthy so we went ahead and removed it. He also repaired a hernia. Wow! Three surgeries for the price of one!!
Kennady was moved to the pediatric ICU to spend the first night. She began to heal quickly and was moved the next day to a regular room.
THE MESS
There are times during these hospital stays that we get physically exhausted because of long nights with little sleep and lots of interruptions. Some days are tough because we have to make BIG decisions. So much emotion is expended to exist in these moments. We spend days wondering if the treatment will work and have absolutely zero control over the outcome. I had to cancel my trip to Big Bend. Our daughter was cut open and had her insides worked on. We are spending so many hours away from our family. We are spending a lot more money on food. Things are falling through the cracks at work. Other people in the church need help and I simply can’t get to them.
THE MIRACLE
In the midst of the difficulty, we are BLOWN away by our support system. EVERY time that Kennady goes through one of these difficult situations it is clear that we are not alone. God shows up with a daily allotment of grace. His grace looks like this: We have incredible grandparents. We have unbelievable church family. Our friends never cease to amaze us. We feel surges of strength and peace. We have recognized that our marriage gets better. Erica and I actually have fun. We are a part of a special program with the state of Texas where Kennady’s medical expenses are 100% covered. We meet new friends. Doctors and Nurses do an incredible job.
Thank you, Jesus. Only you can make a miracle out of my mess.
If anyone wants to go back to Big Bend, let me know. I have some unfinished business out there.
Today, is Kennady’s birthday! She turns seventeen years old!
What an absolute miracle. I (robin) remember, when she was 2 days old, standing in a cold, dark room at Brackenridge Hospital listening to a brain surgeon review her MRI results. He said, “These results are much worse than we expected. Her condition is Alobar Holoprosencephaly, and her brain was not properly formed. Her life expectancy is 2 to 18 months. You can have a surgery to help her pain and comfort level, or you can simply take her home and enjoy her while you have her. It will not solve her problem or prolong her life much.” Kennady living for seventeen more years was absolutely not foreseen. We had the surgery performed (a shunt to relieve pressure), and we took her home from the hospital six weeks later.
We had the mindset that we were going to love and care for our daughter no matter what. She was our baby, and she deserved the best care, love, and attention we could give her. Our family, friends, and church rallied around us.
Days turned into months and months into years.
The years have not been successful in removing the fear of an early death. Instead, every time Kennady has gotten the flu or pneumonia, our minds and hearts go to one place: “is this ‘the one’? Is this when she is going to die?” It is really exhausting to constantly be thinking…“is my daughter going to die this time?” Since it was pronounced over her that she would die in just a few months, we lived in this really weird, guarded place. We love her dearly, but at the same time we were guarded. We knew we would not have her for long. We never anticipated her going to school, or hitting puberty, or becoming a young lady. There has always been this strange feeling of being ready for death. We have lived in a perpetual state of being ready for her to die. We are connected to dozens of other families across the country who have kids with the same diagnosis. On a regular basis, we see Facebook updates where one of them has passed away.
Honestly, I have wrestled with this part of her life so much. A few years back, I started realizing that she was going to live longer, and that we didn’t need to live with death as eminent as we thought. God obviously had different plans. At the same time, I don’t have the opposite thoughts and feelings like, “Kennady is going to live a long time! I don’t ever need to think about a shorter life span!! We can go through life like normal!” It is somewhere in the middle like, “Let’s enjoy today. I don’t know what is going to happen next week. Thank God for where we are right now…”
The more I have learned that lesson of daily gratitude mixed with the reality that life isn’t predictable, the more I have applied it to other parts of my family and life. I really think it is a way to anchor our hope in God and not in the words of a human prognosis. Not just a doctor’s prognosis, but anyone’s. I think we spend so much time in fear of the future that we foster emotions God doesn’t want us to experience. At the same time, we can put all our hopes on a future that is free from pain and death, that we foster emotions that God doesn’t want us to experience when those things happen. I wish I could say that I flawlessly approach life in the perfect rhythm, faith in God, and appreciation for today. That is why I have you in my life, my church, my family. To walk through these discipleship moments and hopefully mature in my faith.
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