We were asked to write an article for “One Extraordinary Marriage” and their March issue of The Position Post. Their ministry is incredible and broaches a topic that many in Christianity shy away from. Go check them out. They asked us to write on how couples can thrive in the midst of troubling situations (like special needs kids). Here you go!
The idea of marriage seems impossible. Two humans living together, sharing all the good and bad, helping each other, liking each other…until they die…WOW! How in the world is that possible? Now, throw in a child that is unable to care for themselves and requires 24 hour attention…for the rest of her life. This is how my wife and I started the early years of our marriage 22 years ago. Our daughter, Kennady, was diagnosed with Alobar Holoprosencephaly which meant that her brain was severely misshapen, and the prognosis was devastating. She would be unable to walk, talk, use her arms or hands, and there was no cure. We got this message from the brain surgeon in a small, dark room next to the neonatal intensive care unit. As we left the room, the darkness followed us. How would we make it?
As we launch into 2021, I’m happy to say that our marriage is stronger than ever. Our daughter is now 19 and we have two sons, now 16 and 14 years old. Over the years, four simple things have built our relationship in the midst of such challenge.
Trust God – Since God is the creator and designer of your family, He is the sole authority on the value and health of your family. People try all sorts of ideas, strategy, philosophy on how to have a fulfilled family, but there is really only one way to move towards your best family: Allow God to have his way. Model your family after His plan! “Unless the Lord builds the house, those who build it labor in vain.” Psalm 127:1 When things are not going the way you want them to, trust that God is still in charge of building your house.
Make a Stand – When we first started connecting with special needs families, it was depressing! Not because of the kids’ situations, but because the parents were in such a funk. In the first few months of our daughter’s life, we made a statement that has guided us through every season: “We are not going to let Kennady’s condition define her or our family.” We had seen many special needs families stuck at home. They were either afraid to go out or just too tired. We decided that we would: go to church, out to eat, send Kennady to school, and go on vacations. This decision forced us to continually look to God… to lean on his understanding and ways.
Invest in Others – When my wife gave birth, there were 50 people sitting in the hospital waiting room. From that moment until this day, we have been surrounded by people willing and ready to help us. They were not all family. They were not there because we were famous or because we were the pastor (we weren’t pastoring a church then). They were all there, and have stayed there, because of years of investing in each other. This takes intentionality and hard work. It also means having the courage and taking a risk to ask for help. This means sacrificing for others. There is no way we could have raised our family on our own.
Take Time to Get Away – I saved this for last, because it absolutely won’t work without the other three happening first. Couples must take time for themselves to rest and recharge. We asked people to watch our kids while we went on a weekly date night. We spent months saving money and lining up help to watch our daughter so that we could take a vacation by ourselves or with our two sons. We trusted that God would take care of our family when we were gone.
When our kids have special needs, that does not assign our marriages to eternal darkness or death. In fact, we have seen the opposite. In the areas where we have lost control, God shines the brightest.
“Well, she didn’t really ‘graduate’,” he replied with a smirk.
That was the phrase that brought our graduation celebration to an abrupt halt. Literally, brought us to tears and anger. It came from a close family member while telling him about Kennady’s latest miracle of going through 15 years of the public school system. Life is hard enough without words (from family members) making it harder. Yes, we know that she didn’t get a 4.0. Yes, we know that she didn’t get first chair in the band. She actually failed at accomplishing many of the goals we set in all of those ARD meetings. What does all of that mean?
The main issue with these words is that they tie directly back to the words of the doctor a few days after Kennady was born. The doctor’s words were, “their daughter will not have a meaningful life.” This recent proclamation was, “she didn’t really graduate.” What this really says is, “Her finishing school doesn’t really matter.” or “She didn’t really do anything.” DUH! Do we really need to hear that? As parents, we are actually experts on every detail of Kennady’s life. We know exactly what she does or does not do.
I’m sure that everyone reading this blog will jump to our defense and say that these statements are harsh. We love that you will support us in this moment. We do benefit from your affirmation.
But… let’s stop for a second and look deeper below the surface…
The doctor should not have used those words right after birth. This family member should not have used these words last week. However, both are a symbol of how humans view what matters. These words show something that we all wrestle with internally. How will I matter? How can my life mean something? What do I actually have to do to have other people say that I matter? The answer: It depends on who you ask. The answer is subject to who is answering… who is saying the words.
Who is saying the words? Whose words mean the most?
It is really tough when the words come so fast and so often from people we are supposed to trust (doctors) and respect (family). Yet, we still have a choice. When people’s words anger, sadden, or confuse us, we have to choose if we will receive and believe them. We are faced with the brutal process of fighting through the emotion and finding the truth. Are the words true? Sometimes tough words are true and we must accept them.
However, we often accept lies. We hear them, believe them, and live our life based on them. The only way to pierce that darkness is with a sword. There is a sword available that is super sharp, cutting between soul and spirit, between joint and marrow. It exposes our innermost thoughts and desires. Nothing in all creation is hidden from God. Everything is naked and exposed before his eyes, and he is the one to whom we are accountable. The sword is THE Word. (Hebrews 4:11-12 NLT)
The only way to combat ugly words is with THE Word. The Bible says that “the Word” has existed from the very beginning, nothing was created except through him. The Word gives LIFE and LIGHT to everything and everyone. The Word brings light in the darkness and the darkness can never extinguish it. (John 1:1-5 NLT)
The Word that the Bible talks about includes the words of the actual Bible, but The Word is more than that. The Word is Jesus. Reading and meditating on the words of the Bible introduces us to the author. The Word is eternal and absolute. We can stand on this firm foundation. We hide under him. We can weather the storm with him. If things in this life are troubling and seemingly impossible, his Word will be the final word.
Who do you know that needs The Word today? Not a word that will judge or condemn, but a word that will bring light and life. Let’s pray for them. Let’s listen to them. Let’s hold them.
Let’s BE THE Word that they need to hear. Let our words heal.
This post is the first in a series of posts from my (Robin) upcoming book. Release date is early 2020.
This excerpt is from Chapter 6:
Kennady spent the six weeks in the Neonatal Intensive Care Unit (NICU) after she was born including Christmas, New Year’s Day, and the day the University of Texas played the BIG 12 Championship. (Those are big days in Austin, TX!) She had tubes hooked up everywhere. Machines were blinking stats to hospital staff. Nurses were walking around, and there were probably 30 other babies in cribs very close by. We had to wear gowns and face masks to protect the infants from potential illness. Fortunately, each bed had a rocking chair, so at least one parent could sit and rock their baby.
The NICU is not known for its homey atmosphere or welcoming décor. Unfortunately, it is either dark and cold or fluorescent bright white and cold. Either way, it is lousy lighting and chilly. We spent hours in those cold rooms feeding her a bottle, rocking her to sleep, singing songs, and introducing her to new friends and family one person at a time. Visitors had to put on a gown and a face mask and then scrub their hands for 3 minutes before winding through the cribs to see our little miracle.
Christmas morning, marked our thirtieth day in the NICU. Instead of sitting around a beautiful tree and opening gifts with extended family, Erica and I dressed Kennady as a little red elf. We sat around her hospital crib and thought of what life would be like when we left the hospital. We had ridden the roller coaster of emotion. Our daughter is born! What a miracle! She has a horrible diagnosis. She is recovering well! She looks different than healthy babies. We were up and down. Up and down.
One unforgettable day I was visiting with Kennady by her crib. At the foot of the bed was a clipboard of doctor notes. Back in 2001, it was typical to leave a chart at the crib so doctors and nurses on other shifts can stay apprised of the patient’s situation. However, on this day, my sideways glance caught the last line of the progress report. In the doctor’s hand, it read, the parents understand that there is no chance of their daughter having a meaningful life.
The bang of those words rang in my mind like a gavel strike. Judgment passed over my daughter’s entire life with a short yet sweepingsentence. I was utterly crushed and seconds later angry. I thought, My daughter has meant more to me in the last two days than you will ever mean to me. I was furious. The indifference! The audacity! Suddenly his credentials, his education, his years of training were meaningless to me, just as my daughter was meaningless to him.
For ten years, I thought about that moment at the crib and always wanted to go look up Kennady’s medical records to see if they reflect that statement still. I wanted proof. I had almost convinced myself that I misread it. Undoubtedly, the transcriber edited the comment to read more appropriately or medically correct. In fact, one time we mentioned it to our palliative care doctor and she could not believe that a doctor said that.
So, in early 2011, I went through the process of accessing Kennady’s records. They told me that it would take several weeks to get the documents and that I could come to the hospital to find the correct record. Kennady was in the hospital 42 days during that period. You can imagine how many pages of records that included. I finally received the call that the documents were ready, and I scheduled an appointment to review them.
Erica dropped me off at the front door of the hospital and waited outside for me to “run in and get them.” My emotions began to swell as I walked the same stark halls a decade before. I was nervous and excited all at the same time. The clerk took a few minutes and then returned with a large folder of documents. It was about four inches thick. Fortunately, the information I was looking for was close to the top. I turned the 6th page of records and saw this:
Tears fell down my face. I couldn’t believe it. There it was. First of all, the statement in the report was incorrect. Erica and I never expressed the understanding that our daughter’s life was meaningless. That is what seemed so disturbing. It was like they were saying we agreed with them. Wrong. False. Untrue.
At this point, I think it is important that I clarify a few things. The doctors and nurses did a phenomenal job physically caring for our daughter in the NICU. We are incredibly grateful for their hard work. We also do not feel like the doctor had a vendetta or was intentionally trying to be mean in his assessment of Kennady’s life. It merely was a clear sign that our doctor, like many others, was tangled in the entrapping lies of society that define meaning with skewed and perverted definitions.
I stood up from the table, slid the big stack of papers back, and asked the attendant to make a copy of that one piece of paper. I am sure that the rest of the documents contained valuable information about Kennady’s care; however, at this point, all that information seemed worthless. The attendant graciously made a copy, and I walked out of the office. I trekked back down the stark halls. I made it back to the mini-van at the hospital entrance. The three kids were in the van with Erica, laughing and talking and in their world. I got in the passenger door and just sat there. Erica said, “Well, what did you find?”
To which, I flatly replied, “It was there,” and then handed her the copy.
Erica and I often wondered what our daughter would have to accomplish before the doctor would deem her meaningful. If she could walk, would she cross the threshold of meaning? If she was able to form words or write sentences, would she be meaningful? Would she have a high market value if she were able to go to college or get married?
I would love to hear from you!
Please comment/respond to the questions below and be a part of the conversation.
Have you ever wrestled with someone else’s declaration over you?
How has that affected the way you live and see yourself?
How have you been successful at redefining yourself?
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!
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.
We are constantly wanting to change specific things about our life. Our hair, our weight, our finances, our job situation or our disability. The list can go on and on. We are thinking that if this one thing changes, then we will be set. We think that we will not have to worry about other things because this change will in essence “fix us”. We think, “If this changes, then everything will be alright.”
After our daughter was born with a severe disability, we were faced with the impossible task of changing or fixing her. We simply could not take away her disability. Don’t get me wrong. We researched, planned, went to the best doctors, and…… we prayed for months…years. It became clear after a while that she was not going to change from this disability. So, now what? How do you live with something that is not changing? We then begin to explore the idea: Does it really need to change in order to be ok? Does she need to change in order to a good or valid person? Does she need to be healed so that she can have a good life or that she can be a meaningful and whole person?
I believe that God says no. No, your life does not need that one thing to change in order for your life to be whole or meaningful. Watch this video on our conclusions:
In no way are we saying that God does not heal and change things in our lives. In fact, our family still prays for God to perform miraculous acts in our life. We believe that he is able and that in many cases he does. However, the bigger picture is that we do NOT have to wait on these miracles in order for us to live in peace. We do NOT have to rely on these changes in order to feel good about ourselves or distrust God in the difficulty.
God offers peace that transcends our surroundings and what we can figure our with our minds.
And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:7
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