We approved all the proofs on Robin’s upcoming book last week! Then, we got an email from our production manager that she found an error on…the cover!! HA! We had spelled the word “forward” instead of “foreword”… So, we had to stop the presses and get it fixed. Just a few moments ago we approved everything again and things should be rolling soon. Below is an excerpt from chapter 4, describing the day Kennady was born.
HAPPY BIRTHDAY
We arrived at the doorstep of week thirty-eight and with it came the scheduled C-section delivery. Saturday, November 24, 2001, two days after Thanksgiving, Erica and I loaded the car early in the morning and took a nervous ride to Brackenridge Hospital. Our moms and dads were waiting there to greet us at the door. Kennady was to be the first grandchild for both sets of parents. While we waited for surgery, family members and church friends filtered through, offering prayers and advice. I sat with great anticipation and thought of all the possibilities.
I just knew that the doctor would deliver our baby girl, and there would be a miracle in the room. Everyone would be shocked as we saw our baby’s completely healthy body enter the world. We would glorify God because of the miracle He had performed for us all. Final tests would scientifically confirm the great work that an all-knowing, all-powerful God had accomplished. Just then, a nurse peeked her head around the corner and said, “It’s time to go!” Positioning herself as the wheelchair driver, she rolled Erica down the long hallway. The drama and delay began to crescendo with each rotation of the wheelchair across the linoleum flooring. I watched as the corridor narrowed, and Erica shrank out of sight.
My waiting continued until finally, I was called into the delivery room. I walked into a pristine, white room. Nurses and doctors worked around Erica. She was awake and able to squeak out a smile for me. I came to her side, and we whispered about how cold the room was. She was already prepped. Within a few quick moments, the doctor reached in and brought our daughter into the room.
The first moments of birth are life-changing—a flash of time every parent remembers forever. The first breaths, the first cry, the open eyes as they capture the hearts of everyone in the room. We looked in awe at the miracle of life—a distinct stand-alone frame in time—and in the next blink, our hearts sank a notch. We saw that her head was much larger than average.
I went straightaway to the small table where she was being tended to and began holding her hand and speaking to her. There was so much love between dad and baby girl at that moment. Standing there, I realized that my life was going to be different. I realized then that I needed to change my attitude, my expectations, and my prayers. My perspective needed to be shaped, not by my education or experience, but by how God was choosing to work through this child. Of course, all of those thoughts went un-articulated, but looking back, I see that moment at the bedside was monumental in the building of my faith. A day would come, not so far off, that my prayers, attitudes and expectations did indeed change.
That said, the worst was yet to come. The medical team sent our daughter immediately into the Neonatal Intensive Care Unit (NICU). The doctors wanted to perform an MRI early in the day to determine the extent of the birth defect. We all patiently waited and spoke with family members who were visiting the hospital. We were praying and believing for the MRI to show signs of healing. We just knew that it was only a matter of time before things would turn around. But, this was not the time…
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.
When is enough…enough? What do we do when we can’t go any further?
Yesterday, I saw a post on Facebook about me. That is always weird. Seeing someone else post something about you.
A lifelong friend posted a very kind message on my mom’s Facebook page:
Kathy, lifting up your children in prayer now….I saw where Sis Phillips called them her “Heroes”… and that they are….Lord, Jesus, enough is enough? Don’t mean to question, but just don’t understand….please hold these kids close, healing, safety, protection, In Your Precious Name, JESUS!
What is she talking about? A lot has gone on in the last 8 days. I will give you some bullet points. 🙂
8 days ago it rained so much that we had to cancel our Sunday morning church service. The bridge near our church flooded.
Tuesday and Wednesday, I drove to Houston for a ministry board meeting.
Thursday, Kennady (our daughter) had an 8 hour back surgery. She had her entire spine fused.
Saturday, our town suffered a 500 year flood that destroy over 300 homes and damaged 200 more. Roads were blocked all over town and we had to cancel our weekend Services for a second consecutive week.
This is our house. The water rose to the edge of those 2 yellow trees!
The Facebook post asked a great question, “enough is enough?”. When is enough…enough?
The Bible does say, “He won’t give you more than you can handle.” Doesn’t it? Actually, it doesn’t really say it like that. Here is what 1 Corinthians 10 says:
13 The temptations in your life are no different from what others experience. And God is faithful. He will not allow the temptation to be more than you can stand. When you are tempted, he will show you a way out so that you can endure. (NLT)
The key word in the passage is temptation. You are tempted to not trust God. These stressful situations tempt you to trust in other things instead of God’s provision, protection, and satisfaction. (sorry, couldn’t think of another ‘p’ word)
The answer to the question of “when is enough…enough?”, is Jesus. Jesus is the answer. Jesus is always “enough”. No matter what we go through, Jesus is able to handle it. We are put to the test through temptation: Do we trust that Jesus can get us through this one, and this one, and this one, and this one. Even when the bulleted list grows and grows, we have a choice. Do we trust him or not? If we are struggling through something, then we look to Jesus for our solution. He always has a way to get us through.
Yeah, but how does that work?
We need:
Uncle Ed has been praying for Kennady and loving on her for 13 years.
PEOPLE in our lives to keep us focused on Jesus when the situation is distracting. We need people to care for us and provide for our needs. We need people to speak the truth of the Gospel when all we can hear are lies. In the local church, Jesus provides PEOPLE to get us through it. We have had PEOPLE visiting us that were a part of our church 13 years ago. When you become family in a church, it makes a huge difference. Find a church. Lock in and don’t leave. You will need them someday in a crisis. Not only do they provide food, shelter and hugs, but they also provide prayer and counsel. They remind you that Jesus cares, and will heal.
PATTERNS in our life to keep us anchored when the waves toss to and fro. Locking into a PATTERN of reading scripture, praying and giving (time, talent, and treasure) pays off big time when you go through tough times. Jesus responded to temptation by quoting scripture. He knew scripture because of his life PATTERN of reciting, reading, and listening to scripture in the tabernacle.
Jesus supernaturally shows up in these people and patterns. They are the canvas on which God draws his masterpiece.
We are extremely grateful to all those who have been the PEOPLE in our life the past week. We love you and can’t wait to be your PEOPLE.
We arrived at the hospital at 6:30am this morning and everything was going well. The doctors and nurses have been so friendly. She went back for surgery around 8am. Erica and I started napping in the waiting room when we got an unexpected buzz from our pager.
We went back to a consult room and both the anesthesiologist and the orthopedic surgeon came into the room. This was odd because they were both supposed to be in the OR. They told us that Kennady was ok, but there were going to have to postpone the surgery. During anthethsia, they went into her artery instead of her vein while placing a central line in her neck. This may cause a stroke if they continue. Therefore, they are calling off surgery, will let it heal, and will have to reschedule. The surgeon is booked all summer so most likely we will have surgery in early fall. So strange, but we trust it is best decision by them to postpone. It takes a lot of planning, energy, and faith to gear up for these things. Plus, all of you get geared up too. We are so thankful to each of you for your prayer, posts, shares, food, gift cards, and everything else.
We love you all and will keep you posted.
Here is what Robin was doing while waiting….zzzzzzz
We are getting so close.
What is she talking about? A lot has gone on in the last 8 days. I will give you some bullet points. 🙂
What People are Saying