Revelation 21:5 “Behold I am making all things new.”
I stood at the rear sliding glass door of my house and gazed longingly at my rain-soaked backyard garden. It had been raining cats and dogs for days, and it was looking like this day would be no different. Annuals were desperate for planting, weeds demanded pulling, and tall perennials were crying out for staking, but it was too wet to do any of that today. A frustrated sigh escaped my lips, and I quietly murmured, “I guess it will just have to wait.”
I then turned my attention to the cherub wrapped in his wings and perched on a bench at the end of my garden. He sat alone and looked like a child praying with head bowed. He was surrounded by an array of flowers that complimented his light gray cement color. My husband bought him for my birthday a couple of summers ago to replace the garden angel TJ destroyed with his paintballs. I enjoyed gazing at this new cherub amidst all of the colorful garden splendor. He was way better made and much better quality than the angel he replaced.
Several years ago, my then 15-year-old son TJ decided it would be funny to shoot up my backyard with paintballs. I arrived home from work one day and was surprised to find my tree trunks pink, my shed orange, and my garden angel yellow with a hole in her right shoulder and feathers from her delicate wings broken or missing. I didn’t find his shenanigans to be as funny as he thought they were, but I have to admit that underneath my outward irritation was a smile I was trying to disguise. Even though he accidentally broke my garden angel I was quite fond of, I did secretly enjoy the delight in his eyes and the way his shoulders bounced up and down in rhythm with the chuckle he couldn’t hold in from being able to pull off a mischievousness that irritated his mother.
The broken, pockmarked angel sat in my garden for a couple of years. Despite my affection for her, I planned on replacing her but had never gotten around to it because in my fondness for her, I had almost convinced myself that from a distance you could hardly tell she was broken.
And then TJ suffered his brain injury.
“How could I replace her now?” I thought. Her presence in the garden was tied to a memory of TJ in his healthy days. Throwing away her broken figure would somehow feel the same as throwing away good memories of when he was young and full of life. It would feel as if he was being erased. She then sat broken in my backyard for several more years.
But after time I began to realize that the good memories she conjured up also brought along painful memories and reminded me of how things once had been and that they would never be that way again. For many years these two polar opposite feelings twisted and turned inside of me like oil and water. They occupied the same space but were distinctly separate and never became one. Until one day when I came to the firm decision that it was time to throw her away. Her brokenness was too painful for me to endure anymore, and it was time to replace her with something new. I then asked my husband for a new garden statue.
Looking at my new cherub that rainy morning reminded me of the painful fact that everything in this world, even things we take great care of, break and need replaced. Everything eventually loses its shiny newness, wears out, and gets old. Buildings become old and get restored; bosses want fresh ideas and substitute workers; teams want winning seasons and exchange athletes; and garden angels get shot up by paintballs and need replaced. We long for a place where things will always remain new, life won’t get boring, bodies won’t grow weak and old, and favorite statues remain in our gardens.
In Revelation 21:5 God announced directly from his throne, “Behold I am making all things new.” God is in the act right now of making all things new, and He promises His people when He finishes His work, not only will all things have been made new, but they will STAY new. They will never break, wear out, or need replaced. We will have new, strong bodies that will never grow old, new discoveries everyday to interest ourselves, and an eternity to spend with our loved ones.
So that begs me to ask the question, dear one…..will YOU be made new? Will you experience the newness that heaven offers? Only those who choose to put their faith in Christ will encounter the newness that is reserved only for heaven.
Answer His call and accept Christ as your Savior today and look forward to an eternity of all things made new.
I awoke this morning while it was still dark outside and the house was quiet. I have always been an early riser. The old, well-known proverb “Early to bed and early to rise, makes a man healthy, wealthy and wise,” my son-in-law Ben quoted to me while we were on family vacation in Utah last summer floated through my mind as I sauntered down the stairs. Ben had noticed my sleeping habits while we were on vacation and was thrilled to see that they resulted in a big, beautiful breakfast buffet which awaited him each morning.
Morning is the time when my thinking is the clearest and I can accomplish the most. I look forward to the quiet moments in the morning that I get to spend with God praying and studying. It’s the time of day when I feel closest to Him.
This morning, as per my usual routine, I headed straight for the kitchen to make the coffee. I pulled the Folgers Breakfast Blend out of the coffee cabinet, grabbed my latest creamer of choice from the refrigerator which right now is Coffee Mate Snickers flavor, and began filling the coffee pot with water. I don’t know about you but I love my morning coffee. It is oftentimes the first thing on my mind when I wake up in the morning and sometimes the last thing on my mind when I fall asleep at night.
As I sat at my kitchen table and drank my morning cup of sunshine, I began googling “Bible studies for special needs parents” in an attempt to find material we could study for Moms’ Group. I stopped on one Bible study in particular titled “Held: Learning to Live in God’s Grip,” and as I was reading about it, an unexpected wave of sadness swept over me and the tears started to fall that even my morning cup of sunshine couldn’t chase away. I had been slapped in the face with the reminder that I was no longer the mom of a child with special needs.
In the midst of my sorrow, I remembered the words spoken from one of the moms at a previous meeting. “This is temporary! This is temporary!” she exclaimed. A sentence with just three words, but for those of us who are suffering, what a profound sentence it is. I then embarked on a quest that morning to find Bible verses to comfort me and remind me about the short-term nature of life’s pain and suffering. This is what I found:
2 Corinthians 4:18 So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.
1 Peter 5:10 And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you.
Psalm 71:20 You who have made me see many troubles and calamities will revive me again; from the depths of the earth you will bring me up again.
Joel 2:25 I will restore to you the years that the swarming locust has eaten, the hopper, the destroyer, and the cutter, my great army, which I sent among you.
Revelation 21:1-5 Then I saw a new heaven and a new earth, for the first heaven and the first earth had passed away, and the sea was no more. And I saw the holy city, new Jerusalem, coming down out of heaven from God, prepared as a bride adorned for her husband. And I heard a loud voice from the throne saying, “Behold, the dwelling place of God is with man. He will dwell with them, and they will be his people, and God himself will be with them as their God. He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” And he who was seated on the throne said, “Behold, I am making all things new.” Also he said, “Write this down, for these words are trustworthy and true.”
After being encouraged by God’s promises, with my materials spread out across the table and my coffee cup in hand, I pondered life for awhile and thought about how every single one of us on this earth suffers in this life. Of course we hate it, and we try our best to avoid it, but no one escapes it. People we love get sick, marriages fall apart, kids rebel and make bad choices, spouses lose their job or get hurt and become disabled. And the list goes on and on.
“For the Christian living in this fallen world, what exactly is the purpose of suffering?” I asked myself. “There has to be a reason God allows us to suffer.” After researching a little more, I came up with two purposes for suffering: To bring glory to God and for our good.
We have a choice of how we respond to suffering. If we choose to suffer well, we display to an unbelieving world that Christ is more valuable and magnificent than any sorrow or pain we might be experiencing. Suffering well creates opportunities to point others to Christ.
Suffering also loosens our tight grip on this world that always falls short of meeting our expectations, and it turns our gaze toward heaven with the hope of all things made new. It motivates us to work for a cause greater than ourselves and increases our capacity of compassion for others. Suffering causes us to put our hope in Christ rather than in the temporal things of this life for which God then receives the glory.
We don’t have to suffer alone though. God comforts us during times of suffering. His presence alone gives us strength and rest to endure our trials. Psalm 34:18 says, “The Lord is close to the brokenhearted and saves those who are crushed in spirit.” Psalm 23:4, “Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.” Exodus 33:14, “And he said, ‘My presence will go with you, and I will give you rest.’” God’s Word is true and infallible, and if the Lord says He will be close to us during our times of suffering, then He will. If the Almighty says He is with us while we walk through the valley, then He is, and if the Great I Am says His presence will go with us, then it will.
As we go about our days, may we always remember the wise words from the mom in Moms’ Group and remind ourselves often that this suffering is temporary. We have been given hope from God’s Word that one day we will be restored, confirmed, strengthened, and established and He will wipe away every tear from our eyes and death shall be no more.
We have an eternity of joy and contentment to look forward to, so go now, dear one, and suffer well.
Lord, we love you. Give us the strength to suffer well for Your glory. Help us to remember that what we experience on this earth is temporary, and that something far more glorious than we could ever imagine awaits us in heaven.
Genesis 4:12 “Now go; I will help you speak and will teach you what to say.”
Have you ever felt insecure or inadequate about performing a job God has given you to do? I sure have! Have you ever made a mistake that you wanted to hide or maybe felt like a failure and wondered if you would ever be able to get anything right? I’ve done that plenty of times too. I recently learned, though, that despite all of our sometimes botched efforts and poor choices, God does His best work with imperfect, mistake-prone people. I would like to share with you a recent revelation I had regarding this truth.
A few weeks before Mother’s Day my friend who is also our Special Needs Coordinator at church texted me and asked me to speak at a Moms’ Day Breakfast for our Special Needs Ministry. I’ve had dreams of being a speaker since I was young and have wondered for over 20 years if those dreams would ever come true. Without hesitation, I excitedly said, “Yes!” and knew immediately what I would speak about. I had been preparing to write a blog titled “The Deep Water” that I posted a couple of weeks ago from the story in Matthew 14 where Jesus walks on water to the disciples who are in the middle of the Sea of Galilee. Much like special needs moms, the disciples were alone and afraid……until Jesus miraculously came to them walking on the water. I sensed that the timing of my upcoming blog post and my friend’s text asking me to speak was being orchestrated by the Holy Spirit, so I decided I would just expand the blog post a little more and make it into a half-hour talk for the breakfast.
As I set out to write, because I’d had the material in my head for years, the ideas came quickly, and I had it written in a day. I then asked my friend Melissa if she would mind looking it over for me. Melissa has been a speaker and author for many years. She is wise, seasoned, and I value her opinions. She said, “Of course.” I told her my talk was on the passage from Matthew 14 and that I was going to read the passage at the beginning of the talk and then basically break it down verse by verse. I then asked her when she talks, if she reads entire passages and then talks about the passage verse by verse. She replied, “No, I usually don’t do it that way. Oftentimes when speaking about a topic, I use Bible passages from all over the Bible.” “Hmmmmmmm,” I thought. “I may not be doing this right.” So I then asked another speaker friend of mine, Jennifer, how she does it. She also said she doesn’t do it that way and does it much like Melissa does.
Well, needless to say, that sent me into a tailspin. My mind froze, and I thought, “I don’t know how to come up with 30 minutes of material and talk about something and just throw verses in.” Thoughts then began racing through my mind like: “I can’t do this. I’m not qualified to be doing this. I don’t know what I’m doing. Pastors do this. They read scripture and then dissect it and teach. Who do I think I am? I haven’t gone to seminary. I’m going to make a fool out of myself!”
So I apprehensively sent my talk to Melissa, and she relayed back that she would read it and get back to me in a couple of days. Well, a couple of days came and went, and I began to climb the walls. My thoughts grew more anxious as I waited, and I checked my email multiple times a day looking for her response. It took all the self-control I could muster not to email her with the hope of nudging her along, but eventually I resolved that Melissa was doing me a favor, so I needed to be patient and not push her.
I then received a text from her stating that she had had a migraine for days and would be getting to it shortly. So I waited a couple more days with my anxiety increasingly growing, and then finally the much anticipated email came. I braced myself as I opened it. It read: “So powerful, Kelly! Very Holy Spirit led! There really isn’t much I would change.” Oh my goodness! I was relieved, and all my anxiety melted away. Her encouraging words were exactly what I needed to hear to keep going and stand up and speak with confidence.
But after receiving the positive feedback, I also began to think about what was going on inside of me and why I was so insecure and anxious about my preparation. God brought the story of Moses and the burning bush to mind.
In Exodus starting in the third chapter, the Lord called to Moses from the midst of a burning bush and told him He was going to send him to Pharaoh that he may bring the children of Israel out of Egypt because He had seen their oppression. Moses was insecure about his speaking abilities and didn’t feel qualified. The Lord then said to him in Exodus 4:11-12, “Who gave human beings their mouths? Who makes them deaf or mute? Who gives them sight or makes them blind? Is it not I, the Lord. Now go; I will help you speak and will teach you what to say.”
I then thought about my method for planning a talk. I have a natural bent to want to read a passage of scripture and then dissect it apart verse by verse, and this bent seems to be a little unusual for someone who hasn’t had any formal training. “Why do I always want to do that and where did that come from?” I thought. It didn’t take long before God reminded me of a Bible study I have been in since I was in my mid 20s.
Travis and I, when we were young and newly married, were invited to be in a Bible study with some people from our church. We have attended that study off and on now for over 20 years. All of the people who attend are older than us, and they are very wise and knowledgeable about the Bible. Most times during the study and especially when I was young, I just stayed quiet because I didn’t feel like I had much to offer, but all the while I sat there quietly under their teaching, I was drinking in their wisdom and knowledge and learning how to study the Bible.
When they first began studying together, they started in Genesis 1. They met every other week and slowly made their way through the Bible chapter by chapter. At the beginning of each night of study, they started by reading the chapter and then dissecting it apart verse by verse. After thinking about these things, it didn’t take long for me to realize that’s where I learned to read scripture and study it verse by verse. That’s what I’ve been doing for over 20 years, and that is what God has been teaching me. It is my default button and what feels most comfortable to me.
Memories also came to mind of when I was a middle schooler. The summer before my seventh grade year, I developed an eating disorder that I struggled with for years. It was so out of control that during my senior year of high school, I went to treatment to help me learn to manage it better. Day after day while in treatment, I was taught to stop and think about how I was feeling and then to write and express those feelings in a journal. Even though that wasn’t one of the more pleasant times of my life and oftentimes was something I wanted to hide and cover up, God still worked it for my good and used it to teach me how to express my thoughts and feelings.
I also remembered court reporting school. During court reporting school, I developed a love for the English language that I never knew I had. I was enamored with words, punctuation, spelling, vocabulary, and sentence structure. But upon graduating, I only worked as a court reporter for a year, and for many years I felt like I had failed and was embarrassed because my schooling seemed like a waste, but all the while, without me knowing, God had plans to use it later in my life for my good and His glory.
All of this Bible teaching from my past along with my successes, embarrassments and failures, God is now using to tell TJ’s story and to help others and point them to Christ.
And this is the way that God works in every one of our lives if we surrender and bring our past to Him. Sometimes God is teaching us in ways we won’t understand until later because we can’t see the bigger picture. And even though we’ve made what may seem like life-changing mistakes, our mistakes are not too big for God. We are never too far outside of His reach that He can’t turn us around and make our paths straight, and we can never mess up so badly that He can’t redeem us and use us for His purpose.
Because you see, dear one, God, in his great love for us, takes our accomplishments and the messy areas of our lives and weaves them together to create a beautiful story, and it’s not just any old story. It’s His story….the story He’s writing about us.
Our biggest need during the three years that TJ lived at home was respite. We just needed a break from time to time to rest and recharge. We had two options for TJ’s care on the brain injury waiver. One, we could choose to be TJ’s care provider and get paid for taking care of him by the State, or, two, we could put him in adult daycare or be given an allowance and hire our own caregivers to care for him while we worked. We chose the first option because of lack of trust with outside facilities and also because we felt it would be too tiring for both of us to work all day and then come home at night and take care of him. As his paid care provider, we were not given any respite services from the State. Through Medicaid there was a small amount of respite available, but because TJ had a trach, he needed skilled care, and they could not staff it. All they could provide was a CNA, so, therefore, we received no respite through Medicaid.
It is common for families to get their services cut while on the waivers. While we were on the brain injury waiver, in the beginning we received a bath aide five days a week. Then we were cut to two days a week. When I asked our social worker why our services were being cut because we were barely getting by as it was, she stated, “The disabled are viewed as a drain on society, so when funds start getting tight, they are the first ones to get cut.” Needless to say, I was appalled. My precious, kind, smart son who once had dreams of becoming an engineer was now viewed as nothing more than a drain on society.
For the purpose of writing this post, I spoke to many special needs families in an attempt to gather information about their needs. I found some families feel like they get enough respite on their waivers and sometimes don’t even use all of their allotted respite, but I also found other families who are exhausted and feel that they do not receive enough respite and that it is a major problem.
One mom with two special needs children applied for the intellectual disabilities waiver. The waiting list at the time of application was over two years. During the course of those two years, they moved to another house, and the waiver acceptance letter was sent to the old address. When she called to inquire about the status of the application, she was told the letter of acceptance had been mailed to the old address a while back and she had missed the deadline for the time to respond. She was told that there was nothing that could be done about it, and they were put back on the bottom of the list. Currently they are still not on any waivers, and the only respite they receive is from what their church offers, which is three hours a month. They look forward to it all month only to sometimes find out that it has been cancelled due to a lack of volunteers to care for the children.
A few months ago I met a special needs mom new to our church, and one of the first things she said to me was, “We have no respite.” Upon hearing her distress, my heart ached for her because I understood the exhaustion and despair she feels. She and her husband are now in their retirement years and caring for their son is becoming too difficult for them physically. Her son is on a vent at night when he sleeps, and she is terrified of what is going to happen to him once he is put into a nursing home.
Another friend cares for her brain injured loved one by herself at home because he experienced abuse while in a facility. She works at home three days a week and goes to the office two days a week while two caregivers she trusts care for him at home. She said she is exhausted and needs a break but doesn’t want to burn her caregivers out and doesn’t trust him with anyone else because of the past abuse. She rarely receives any respite.
A young, newly married, stay-at-home mom has two toddler boys, and one of them has a speech disorder and some cognitive issues. Because he is frustrated from not being able to communicate, he screams all day long. By the end of the week, she is about to lose her mind. They have applied to be on a waiver, and if accepted they will eventually receive some respite, but the waiting list is long. She was told it could be up to two years or longer before they will receive any help.
By sharing my story and other family’s stories in this Respite Care series, you may now be more aware and understand better the needs and challenges special needs families are experiencing. You may want to help but are not sure how. Below is a list of practical ways that you can help special needs families:
Begin a Special Needs Ministry at Your Church Many churches are recognizing the need for programs within the church for individuals with special needs and have developed special needs ministries. If you attend a church that doesn’t have a special needs ministry, if you feel so led, it may be something you might want to consider discussing with church leadership who can help aid in that process.
Buddy On Sunday Morning The special needs ministry at the church I attend provides a buddy for every child with special needs while their parents attend church. Most special needs ministries require a lot of volunteers, and our church in particular sometimes has trouble staffing these volunteer buddy positions. Many may be afraid to volunteer in this ministry if they’ve never worked with a child with special needs before. For me, before TJ’s injury, I would have been nervous about volunteering in this ministry, and I would have shied away from it.
When TJ was alive and was attending church, a man named Tom volunteered to be TJ’s buddy. He taught TJ a lesson from the Bible every Sunday while Travis and I attended church. Travis and I looked forward to church because sometimes it was the only break we would get for weeks. It was a time when we could turn off being on call, enjoy alone time together, and just worship and listen to God’s Word. We are very grateful for Tom’s service to us and that he cared about TJ’s spiritual needs and wanted him to grow in his relationship with Christ. TJ loved him, and he and Tom developed a very special friendship. I know Tom was very blessed by TJ as well.
Now that TJ has passed away, Travis and I serve as buddies a couple of Sundays a month. Frequently, I buddy with one little boy with Down’s syndrome who is 9 years old. Every morning when I walk into the classroom, he is there waiting for me. An enormous smile breaks out across his face when he sees me, and he runs to me and throws his arms around me. We then walk hand in hand to his classroom. During music time, I stand quietly by and watch him while he enjoys worship. My heart sometimes feels like it will explode because it is overfilled with joy from watching him sing and dance. Afterward we break into small groups. I may have to gently direct him a couple of times or help him with his lesson, but otherwise that is about as hard as it gets. Almost every Sunday toward the end of group time when he is getting tired, he plops down on my lap, shoves his thumb in his mouth, and snuggles into me as we wait for his parents to pick him up. He is an absolute joy, and I feel so blessed that I get to be his buddy. This is a good example of what you can expect if you volunteer in a Special Needs Ministry.
Buddy at Saturday Respite Care Our special needs ministry, as well as many other churches, offers respite one Saturday a month for three hours. This is the day when parents can drop off their children with special needs and their siblings for a much needed break. Some families use this time to be alone with their typical kids and give them some undivided attention, or they may use it to get some couple time with their spouse. Right now because of volunteer needs, our church, in particular, only serves the families who attend our church but in the future would like to open this event up to the community if God provides more volunteers.
Other Various Ways If none of the above ways to serve appeals to you, there are other ways you can serve in a Special Needs Ministry. You can volunteer for once-a-year events like the Wonderfully Made Family Camp or Night to Shine. You can provide transportation, shop for events, do food preparation, or serve on a leadership team.
It is a great time to be a part of a special needs ministry. I believe God has heard the cry of special needs families and has seen their suffering, loneliness, and isolation. He is working and moving in this ministry, and exciting things are happening!
Respite Home For several years I have had a dream of building a respite home. After sharing this with our special needs coordinator, I discovered she has had the same dream as well.
During the week, the respite home would be used for training opportunities for people with special needs. It would hold classes for cooking, lawn care, folding clothes, woodworking, crochet, karate, etc. The home could also be used as a place that gives opportunities for people with special needs to work, like stuffing envelopes, while being supervised. It would be a place where individuals with special needs can learn, grow, and build positive relationships with one another while they’re learning new skills.
On the weekends the home would be used as a weekend respite facility. It would be a safe place with well trained staff where parents can take their children with special needs for the weekend so they can get a much needed break.
Please join us in prayer that God would provide the funds, staff, and location to undertake this project. We think it would be a huge benefit to the special needs families in our community.
Waivers and Safe Care Facilities Much work needs to be done with the waivers and care facilities. More services need to be provided on the waivers so the families who have chosen to care for their loved ones at home can be successful. And for the families who have chosen a facility to care for their loved ones, the facility absolutely must be a safe place for the residents who live there. This can be achieved by installing cameras in resident rooms, requiring more extensive training and testing for CNAs with better pay, and providing more staff so patients will receive timely and thorough care.
My goal in writing this Respite Care series was to educate and inform others about what the lives of special needs families are like. I hope I have achieved that and you now know a little bit more about this very special community. My hope is that as people become aware of this under-served community, more will be done to improve the lives of individuals with special needs and their caregivers.
Psalm 41:1-4 says: Blessed is he who considers the poor; The LORD will deliver him in time of trouble. The LORD will preserve him and keep him alive, And he will be blessed on the earth; You will not deliver him to the will of his enemies. The Lord will strengthen him on his bed of illness; You will sustain him on his sickbed.
“The poor intended, are such as are poor in substance, weak in bodily strength, despised in repute, and desponding in spirit. These are mostly avoided and frequently scorned.” (Spurgeon)
Consider the poor and refuse to look away from human suffering. Consider the poor and step in and help where you can. Consider the poor and pray for them daily. Consider the poor….and YOU will be blessed.
Who do you turn to when you feel all alone and in deep water? Where do you go when no one understands and may even lack sensitivity to the struggles you are going through? Sometimes we try friends, family, church, medical providers, counselors, support groups, organizations all to no avail. No one has the answers. No one seems to get it. No one stays by your side. What do you do now?
There was a time when I was all alone and in deep water, and I turned to Jesus. He showed me that He was with me every step of the way and was walking right by my side.
Matthew 14:22-33 “Immediately Jesus made His disciples get into the boat and go before Him to the other side, while He sent the multitudes away. And when He had sent the multitudes away, He went up on the mountain by Himself to pray. Now when evening came, He was alone there. But the boat was now in the middle of the sea, tossed by the waves, for the wind was contrary.
Now in the fourth watch of the night Jesus went to them, walking on the sea. And when the disciples saw Him walking on the sea, they were troubled, saying, “It is a ghost!” And they cried out for fear.
But immediately Jesus spoke to them, saying, “Be of good cheer! It is I; do not be afraid.”
And Peter answered Him and said, “Lord, if it is You, command me to come to You on the water.”
So He said, “Come.” And when Peter had come down out of the boat, he walked on the water to go to Jesus. But when he saw that the wind was boisterous, he was afraid; and beginning to sink he cried out, saying, “Lord, save me!”
And immediately Jesus stretched out His hand and caught him, and said to him, “O you of little faith, why did you doubt?” And when they got into the boat, the wind ceased.
Then those who were in the boat came and worshiped Him, saying, “Truly You are the Son of God.”
So let’s imagine this setting. Jesus tells his disciples to get into a boat and go to the other side while He stays behind and goes up on a mountain to pray. The disciples were alone without Him on the Sea of Galilee.
The Sea of Galilee was well known for having sudden storms that come out of nowhere, and that is exactly what happened in this passage. Now the disciples had been caught in a similar storm before, but that time it was daylight and Jesus had been with them. This time Jesus had sent them out on their own.
On that stormy night, when the disciples were in the boat all on their own, I wonder what they were thinking? I wonder if they looked out at the dim outline of the hills where they knew He was and wondered why He had sent them out and not gone with them? Did they feel like maybe He didn’t care and had more important things to do?
But unbeknownst to the disciples, Jesus had His eye on them the whole time. Mark says in his gospel that He saw them distressed for hours before He went to them. Why would Jesus do that? Why would he let his followers struggle and toil with fear and uncertainty? Well, I believe that’s how Jesus trained them to learn to live without His presence. And that was a symbol of what the lives of future followers for generations to come would experience as well.
You see, sometimes Jesus sends US alone into a storm.
When you’ve lost your job and you have no idea how you are going to pay this month’s bills.
When you get the diagnosis that your spouse has a terminal illness.
When your child has flunked out of college and is headed down a bad road and you are concerned for their future.
Yes, sometimes Jesus sends us into a storm, but He has His eye on us the whole time as well.
After the disciples had struggled for quite awhile, when they were in their greatest hour of need, Jesus came to them walking on the water. The disciples were afraid because they didn’t recognize him. Were their minds so absorbed in their circumstances that they failed to recognize the One who had come to save them? Or did they judge incorrectly because it never occurred to them that Jesus would miraculously come walking across the water to rescue them from their plight? Until they heard, “It is I. Do not be afraid.” What a glorious sound that must have been! Although they were deceived by his appearance, they knew Him by his voice.
Like the disciples, sometimes we also fail to see the work that Jesus is doing in the storm, and we forget that He has His eye on us the entire time as well. We can become consumed with our circumstances and our fears and our doubts, and we forget that He is there and wants to save us. Jesus can come to us in miraculous ways also.
In December of 2013, my then 17-year-old son TJ was very sick from a brain injury he received while undergoing heart surgery in April of that same year. The brain injury left his mind cognitively intact but his body severely disabled. At this time in December he was a patient at St. Mary’s Hospital at Mayo Clinic in Rochester, Minnesota.
This was during our second Life Flight trip to Mayo after his surgery. He had initially spent four months there right after surgery and then was discharged, but he declined rapidly after coming home, so he was flown back up there a second time.
By this time in December, it had been eight months since it all began. Things looked bleak, and there was no end in sight. I stayed in Rochester with TJ while my husband stayed back at home and worked. I was worn out, scared, and alone. My girlfriends and family were three hours away and had families of their own to take care of. TJ’s brain injury had hit us out of nowhere, and like the disciples, I was in a storm and all alone.
I was staying at the Ronald McDonald House a couple of blocks down the street from the hospital. My routine every day was I walked up to the hospital in the morning, stayed all day, and then when it was starting to get dark, I walked back to the Ronald McDonald House to sleep for the night.
One particular morning, it was snowing outside, so I pulled out my enormous black coat a friend had graciously given me. It went all the way down to my ankles and had a huge, over-sized hood that I had to hold up with my hands or it would flop over my face and I couldn’t see.
I rode the elevator down to the lobby and grabbed a granola bar as I headed to the door. I then started my way up the snow covered sidewalk to the hospital. The snow was gently falling, and even though traffic was heavy that morning as people were making their morning commute, it was kind of quiet. There was a stillness in the air, and everything was white and beautiful.
I had been holding my hood up with my hands as I walked along, but my arms were growing tired, so I decided to let go of the hood and just let it do what it wanted. I couldn’t see, so I resolved to just keep my head down and watch my feet as I trudged along.
I could hear the snow crunching under my feet as I walked, and my legs felt heavier with each step I took. I had just woken up but was still so tired…..and I was afraid. My mind was racing with thoughts like: What if TJ never gets better? What is his life going to look like? What if he doesn’t get rid of that trach? How am I going to take care of his trach and all of his respiratory problems? How are we going to live like this?
So I’m thinking all of these thoughts, and I’m tramping along through the snow, and then…..for one fleeting second, when I was in my hour of need…..I felt the presence of Jesus walking in step beside me. I caught my breath and abruptly stopped. I threw off my hood and looked beside me, but no one was there. I was stunned. I had never had that happen before. I cried out loud, “Jesus, please stay. Please don’t go.” But the encounter was over, and the feeling was gone, so I turned and continued my walk to the hospital…..but with a little bit lighter step because from that point on, I knew that Jesus had eyes on me and I was not alone.
That day my relationship with Jesus changed.
That day I believed that Jesus was with me in the middle of the storm even when no one else was.
That day I believed that Jesus shows up when I am in my hour of need.
That day I believed that Jesus was a friend who was even closer than a girlfriend.
That day I believed that Jesus was walking by my side even in a far off place, like Rochester, Minnesota.
You see, Jesus shows up when times are hard. Jesus performs miracles when we are alone and afraid. He speaks to us when we are in our deepest sorrows and in the middle of a storm, and when we hear his voice, we cry “It is the Lord!”
In verses 28 and 29, Peter said to Jesus, “Lord, if it is You, command me to come to You on the water.” Now remember at this point in the scripture, the boat is in the middle of the lake where the water is deep. Why would Peter even think to make such a bold request? Because at this point in Jesus’s ministry, Peter would have been used to seeing miracles performed. His faith and trust in Christ had been built and he was at ease leaving his comfort zone when Jesus was standing by. Jesus’s answer to Peter’s request was simply, “Come.”
Now notice what Jesus did not say. He did not say, “Okay, Peter, come and bring James and John with you because it’s really scary out here in the deep water and you are going to be afraid, and I don’t want you to be alone.” Jesus didn’t say that because sometimes when Jesus calls us into the deep water, we have to go alone, and we have to learn to depend only upon Him. We don’t get to take Mary and Susie with us.
When Jesus bids us “Come,” when we get down out of the boat and step out into the deep water, if we do not lose sight of Him despite our sometimes harrowing circumstances, what we learn is…..
The deep water is where adventure is.
The deep water is where we see miracles happen.
The deep water is where our faith grows.
The deep water is where we accomplish things we never knew we could.
And most importantly, the deep water is where Jesus is.
When Peter realized the miracle he was taking part in, he took his eyes off Jesus and looked at the chaos around him……and he began to sink. He cried out, “Lord, save me!” And Jesus stretched out his hand and caught him. Even when Peter failed after participating in a miracle, Jesus was there to save him.
Sometimes we too take our eyes off Jesus and we begin to sink….
When our minds race with anxiety about our drug-addicted child’s unknown future, Jesus is there to save us.
When our fear runs rampant about our elderly parent’s health, Jesus is there to save us.
When we are exhausted and lose our temper with our children from the demands of raising a young family, and we are afraid we won’t be able to keep this up much longer, Jesus is there to save us.
Jesus and Peter then got back into the boat, and all the disciples began worshiping Him. The disciples had progressed quickly from fearing the storm to praising the name of Jesus because of the power Jesus had shown in walking on the water and the love He displayed by taking care of a sinking Peter.
Jesus isn’t just walking toward us, like He did with the disciples that stormy night on the Sea of Galilee, but He’s walking WITH us, just like He did with me on that cold, snowy, lonely morning in Minnesota. He’s walking right by our side. Even though we can’t always feel His presence, it doesn’t mean He’s not there.
Jesus is closer than a dear friend. In fact, He’s our best friend, and He truly is the Son of God.
Psalm 68:5-6 “A father of the fatherless, a defender of widows, Is God in His holy habitation. God sets the solitary in families; He brings out those who are bound into prosperity; but the rebellious dwell in a dry land.”
When TJ was discharged from Mayo and a brain injury rehab facility, both times our plan was to take care of him at home. Both places were very concerned about it because of the amount of care he needed. They were concerned his care would be too much for us, and we would get burned out. They were right. It did take an enormous toll on us.
After reading last week’s sneak peek into a three-hour period of time into our lives, many of you may now be thinking, “OK. I get it. The care is overwhelming, but if he’s too much to take care of at home, why don’t you put him in a facility?” That’s the issue I would like to address in this second part of the Respite Care series.
Let me start by saying that in every hospital and care facility we were in, there were absolutely amazing, fantastic people working in every one of them. Several of these people I later had in my own home to take care of TJ from time to time. They worked very hard and were very compassionate to the people they served. Some we developed deep bonds with, and I still stay in touch with them. But as with anything in this life, there were some bad apples as well in these facilities, some workers who shouldn’t even be in health care taking care of helpless, defenseless people. Our experiences with these people are what I want to talk about in this posting.
After TJ’s injury in the spring of 2013 until Thanksgiving of 2014 when TJ came home for good, he was in and out of hospitals and rehab facilities. In the fall of 2013, he was in a facility for rehab, and his body was contracting and twisting severely. It was a terrible thing for a mother to watch. It was involuntary and he couldn’t control it. He was laying on his back, and when the muscle spasms hit, he would arch his back severely. It didn’t even look human. The position he was in was causing the end of his trach to press into the walls of his trachea closing the hole of his trach and cutting off his airway. I could tell he was struggling to breathe. I started panicking and told the RN who was standing by that he couldn’t breathe, and she responded, “Well, maybe that’s a good way for him to learn to quit arching his back like that then.” My mouth fell open at her response. I was shocked that a healthcare worker would say something like that. We weren’t talking about an arm or a leg. We were talking about his airway. At this point I was starting to realize that I would never be able to leave him alone when he was in a care facility.
That same facility would not let me stay overnight with TJ. After he had been there a couple of weeks, the morning of what turned out to be the last day he was there, I was arguing with his nurse over the phone because they weren’t keeping his lungs suctioned out, and he was having trouble breathing and would get upset and agitated. She would not listen to me and hung up on me. I was concerned about his respiratory needs and also frantic about the twisting his body was doing, and nobody seemed to be too concerned about it. When I arrived at the facility that morning, five or six staff members surrounded me. I tried to explain what my concerns were, and I didn’t feel like anybody was listening or was as concerned as I was. I saw one staff member roll her eyes at me. I finally said, “I just want to take him to the hospital. He just needs to go to the hospital.”
A short while later, the supervisor marched into TJ’s room and very irritatedly told me that they would call an ambulance to transport him to the hospital but that I would have to go by myself with TJ. It was protocol at this facility to send a nurse with a patient to the hospital, but I assume that because I made them mad and they didn’t feel like he needed to go to the hospital, she was not going to send a nurse with me. At this point I was crying and bewildered at the condition my son was in and at my inability to get anyone to listen to me, so I said that was fine and was just relieved he was going to the hospital.
When we got to the ER, after seeing the state TJ was in, the ER staff was also very concerned about his condition. I asked if he could be flown back up to Mayo, and they said, “Yes, that’s where he needs to be because they know him best.” Because of his trouble breathing–which no one at the rehab facility seemed to be too concerned about–the ER staff put him on a vent, loaded him up on a helicopter, and flew him back up to Mayo that morning. Although I was relieved to be returning to Mayo where I knew he would get exceptional care, the whole thing was terribly traumatic, and I felt, for the most part, that we were on our own.
After arriving at Mayo, the respiratory therapist suctioned and suctioned and suctioned. She said he was so full that it was like suctioning a bucket. After suctioning he was OK, and they took him off the vent and turned their attention to his twisting symptoms.
Fast forward now to sometime during the year of 2016 when TJ had been home about two years. One afternoon TJ and I were fighting about doing home therapy. We were always fighting about doing home therapy. I desperately wanted him to get better and have a life, and I also was concerned about what would happen to him once my body gave out and I couldn’t take care of him anymore. So I pushed him all the time to do his strengthening exercises at home so that he could hopefully become more independent. He resented it. One day, exasperated, I said to him, “TJ, why will you not do your therapy?! Why do I have to struggle with you all the time about this?!”
After fussing and crying and throwing a little bit of a tantrum, he finger spelled to me, “Because I was attacked and beat, and I feel hopeless, and I just can’t get motivated to do it!” I replied, “What?! What are you talking about?” He then went on to tell me that one of the workers at a rehab facility he had been in had abused him. He told me who the man was, and then I began remembering some earlier encounters we had had with this man.
Toward the end of TJ’s stay at a different rehab facility, we were in the process of transitioning TJ to home on a full-time basis. We were building a room onto our house for him, and it wasn’t quite done yet. He had been there a very long time, and he was miserable and crying all of the time. At this point in time, his hands were too twisty to finger spell, so I thought his crying was because he was sick of being there and wanted to come home so badly. We had no accessible shower for him at that point, and I couldn’t get him up the stairs to shower him, so the solution I came up with was I would be with him every day of the week during the daylight hours, and he would come home after lunch on Friday and stay all weekend until Sunday evening. All he basically had to do was sleep there alone, and then either I would be there or he would be at home. I thought that was reasonable and would help him get through the short remainder of his stay there while we finished building his room. He still cried and didn’t like it and it frustrated me.
One Sunday evening as I was returning him to the care facility, one of the male workers came out to the van to help me carry in all of his equipment. When we got in the room, the man went into the bathroom and turned on TJ’s shower. TJ then made a noise I had never heard him make before. It was like a whimper. I was alerted and my antennas went up. When the man left the room to go back out to the van, I asked TJ, “Has something happened to you, TJ? Is there something wrong?” He stared at the floor, paused for awhile and seemed to be thinking, and then he slowly moved his feet back and forth which was the signal for “no.” I felt relieved and thought everything was OK and went back to getting him settled in.
The conversation below is the conversation I had with TJ two years later when we were fighting about therapy. He finger spelled the entire conversation, and it took us a week to write.
Kelly: How did they find out that you didn’t like Ricky?* TJ: I think I started to hate both the DON and Ricky after I had asked that the cameras need to be checked. Kelly: How did you communicate that to them? And who did you tell? TJ: The first was my speech therapist, Marcy.* Kelly: Did you use your communication device to tell her? TJ: Thumbs up. Kelly: What did you say? TJ: I asked her if she could check the cameras. Kelly: What did she say? TJ: She said, “I will.” Kelly: Do you know if she ever did? TJ: No. I don’t know if she ever did. Kelly: Did Ricky find out you told Marcy to check the cameras? TJ: Yes. Kelly: What happened? TJ: That was the first time I got beat. Kelly: OK. So you didn’t start getting beat until after that. So why were you telling them to check the cameras? What were you wanting them to see? TJ: Him taking my iPad. Kelly: Larry* and David* had been taking it up to that time too. Did Larry and David do anything to you? TJ: No. Kelly: Can you give me the details of that first beating? TJ: No. Kelly: Well, what are we going to do then because we have to know what happened? They need this information. TJ: It’s mainly because I don’t remember. Kelly: Why don’t you remember? TJ: Because he hit me. Kelly: Where? TJ: On the top of my head. Kelly: How long after you told Marcy did it happen? TJ: That I don’t know. Kelly: Rough estimate? TJ: I think it was a day or so. Kelly: OK. Now describe as much as you can remember about that first time. TJ: Harry Potter was playing on TV. It was after 12 o’clock. All I can remember is a deep voice, dark person coming in my room. I also remember him saying snitch. Kelly: Anything else you can tell me about that? TJ: I woke up around 2 o’clock. I thought this couldn’t happen and I fell back to sleep. I woke up at 7 o’clock the next day. Kelly: Tell me about the next assault and anything that happened in between there. TJ: I remember this day because it was really cold outside at the time. Ann*, PT, was being really offish with me and I just wanted to scream at her and say what the heck had happened to me but I know I couldn’t. Kelly: Is this significant to you because you were hurting inside and you couldn’t tell anybody and Ann was probably pushing you and you just wanted to cry? TJ: Thumbs up. (Crying.) Kelly: Can you tell me about the second attack? TJ: This is what happened. It was a lot like the first time, but he said something about my crying BS. Kelly: So everybody knew you were crying then? TJ: Thumbs up. Besides that, everything was the same. Kelly: Did he hit you in the head again? TJ: Nods. Kelly: Did it knock you out or daze you again? TJ: Thumbs up. Kelly: Same time of day? TJ: Thumbs up. Kelly: How soon after the first attack did the second attack happen? TJ: One month. Kelly: Did anything trigger it? TJ: I think it was all the crying I did in front of you (pointing to mom). All of the attacks were pretty much the same. Once I woke up and I remember having trouble breathing. The third, fourth, and fifth attacks were because I was crying in front of you. Kelly: Each time did he knock you out or were you dazed? TJ: I remember being dazed four out of the five times. Kelly: OK. Talk about what else was happening there that you were upset about. TJ: All I can say is you are going to be mad. One time one of the CNAs came in and pulled the call light out of the room, between 5-10 times. Another time it was the CNA that dropped the F-bomb while I was showering. Then about eight weeks later the same CNA came into my room and literally had laid down on the floor to pull away my call light because I was in the eagle nest. Kelly: Why did they take your call light away? TJ: That I don’t know. Kelly: Do you think you were hitting it too much? TJ: Thumbs up. Kelly: Why were you hitting it a lot? TJ: Because I needed something. Kelly: What kinds of things were you needing that you kept calling and calling about? TJ: Being suctioned and bathroom and things. One time I remember having to go to the bathroom so I hit the call button and I peed and pooped my pants and I had to wait for hours to be changed. Kelly: Why did it take so long? TJ: I had Liam* and a blonde girl working on my hall and they came in my room, looked at me and left. Kelly: Did Ricky say mean things to you? TJ: He was extremely mean to me. If I had an accident he would say something like, “Oh my God! Why do you always have to piss and [expletive] every [expletive] day?” That’s all I can remember. Kelly: Was he rough with you? TJ: Thumbs up. Kelly: Was he just angry and mad? TJ: Thumbs up. Kelly: Was that every time you had an accident he would be like that? TJ: Thumbs up. Kelly: Were there other people who would get angry too? TJ: Thumbs down. Kelly: Was Ricky in your room alone when that was going on? TJ: Thumbs up.
Before I started recording our conversation, TJ asked, “Mom, do you remember how when you were there, he was always standing outside of my room?” I had forgotten all about that. When I was there visiting TJ in the evenings, the man was always outside of TJ’s room which was unusual. Nobody ever did that. I remember wondering what he was doing out there all the time, but because I was so naive, I thought at the time that it was great. Usually I could never find anybody when I needed something, but he was always right there. I never put it together that it was because he was listening to what TJ was telling me. TJ cried and cried the whole time I was there, and I never knew why, but the man heard it and he knew why. After I left for the night, he would return to TJ’s room and hit him in the head for crying to me. TJ also told me that he threatened him, told him he knew where he lived and would hurt me and his sisters if he ever told anyone.
After learning all of this, it started making sense why he always wanted his iPad in bed with him when I left for the evening. It was a big ordeal every night. I couldn’t figure out why he always wanted his iPad because he couldn’t use it. We only had it there so the nurses could play music on it for him.
Travis and I both felt terribly guilty that we didn’t pick up on the fact that something was wrong and that we didn’t take his crying more seriously. The man terrorized him. We just never dreamed that somebody would do something like this.
There was also a female worker who called him names while he was in the shower. His trach was not covered when he was in the shower. They just left it wide open, and I never realized they weren’t using a guard until right at the very end of his stay there. I just assumed they were being safe. I’m guessing what probably happened during the shower was he was getting water down his trach, couldn’t breathe, and started going crazy. The female worker got sick of it and called him a “[expletive] psycho.” He told on her, and after that incident she was removed from his hallway and was not allowed on his floor again but apparently would later come back and remove his call light if she heard he was using it too much.
I believe the reason why some workers were pulling out his call light was because communication was so difficult and they didn’t want to take the time to figure out what he needed, so they would just walk in the room, turn it off, walk back out, and then he would call them again. I believe it is actually against the law for patients to not have a call light. Also he was trached, and if the trach came out, he wouldn’t have been able to get a hold of anyone.
TJ also reminded me of a time when I had seen his call light unplugged. I had forgotten about that as well. When I asked the nurse why his call light was unplugged, the nurse said, “Oh, I don’t know how that happened,” and plugged it back in. I just thought it was an accident and really didn’t think much more about it. TJ told me a CNA had unplugged it that morning.
There were many good nurses, but TJ was so complicated, and sometimes they didn’t always understand his needs. Other times I assume they just thought I was an over-the-top, crazy mother and didn’t know what I was talking about. But one particular time, I was sick and wasn’t able to go to the facility where TJ was. I was worried about him, so my husband went to check on him. When he walked into the room, TJ was covered in secretions all down the front of him, and he was crying, agitated, and very upset. His nurse came in, and because of his agitation, she was going to give him some medications which would make him drowsy. Travis told her that the problem was he couldn’t breathe and he needed suctioned. He started suctioning then and an enormous amount of stuff came out of his trach and lungs.
After TJ came home, a social worker visited us once a month. The first thing she told me when she took on our case was to keep TJ out of the nursing homes and group homes because they were not good. She said he won’t make it. She went on to tell me that there was a man who was very similar to TJ who was in a nursing home. At night he had a machine that he was connected to because he would stop breathing. One night they forgot to plug his machine in, and he stopped breathing and died. She said he would have laid there knowing what was happening the whole time and wasn’t able to contact anyone.
For these reasons, even though it was very difficult and at times almost too much, we knew we had to do everything we could to take care of our son at home. During his time at home, a black cloud that we tried to ignore hung over us. We knew one day our bodies would give out and we wouldn’t be able to take care of him at home anymore, and then what would happen to him?
As I stated last week, my goal is to raise awareness about the challenges families with special needs or brain injured loved ones are facing. I believe there are people who care but are unaware of what’s really going on in the brain injury and special needs communities.
I no longer need to be in the special needs community…..but I cannot leave it. My eyes were opened when we entered this whole new world that I knew nothing about. I was shocked to see how poorly families and people with special needs are treated, dismayed that there was no help available, and frustrated because it seemed like many did not care. In response to the Holy Spirit’s nudging, I felt I needed to do something, anything to help improve the lives of special needs families, so I’ve begun writing about our experiences.
There are all different levels of severity of special needs and brain injured, and not everyone is in the same dire circumstances that we were in. On one end of the spectrum, some have challenges and frustrations but are able to manage them, for the most part, and maybe just need a few hours of respite every few weeks. But then on the other end of the spectrum, there are families like us with extreme cases who get no respite and are desperate and feel there is no help available and nowhere to turn.
This is an enormous problem, and I am just one person. My hope is that as people become educated about the needs in these communities, more will get on board to help make a difference so that lasting change for the better can occur for these families.
The sun was just peeking over the horizon when I awoke. I laid in bed for a while staring out the window at the sunrise. My thoughts drifted back to earlier days when TJ was alive. As I listened to the faint tictoc of the clock in the background, I thought, “What would I be doing right now if he was still here?” It certainly wouldn’t be laying in bed and slowly waking up as I was doing. Just thinking about the old routine made the stress start to well up inside of me, and as I rolled over, not wanting to leave the warmth of my blanket cocoon just yet, I whispered to myself, “I’m so glad we don’t have to live like that anymore.” Guilt then washed over me for even thinking something like that. Of course I would rather have TJ here…but not like he was. I’d want him healthy, but sadly, I couldn’t have both. In an effort to fend off the guilt feelings that plagued me, I got up to make the morning coffee. As I traipsed down the stairs, I reassured myself, “Don’t feel guilty. Guilt is not from God. TJ would understand how you feel, and he would feel the same way.”
Our sleeping arrangements had become rather unusual since TJ’s brain injury. Because he was trached and our room was a floor above his, we didn’t feel comfortable leaving him downstairs alone at night. We were afraid his trach could come out. It had happened a few times in the past. He was unable to clear his throat or swallow, and if the trach came out, after a while his trachea could get occluded with secretions, and he would be unable to breathe. Dr. Schiltz once told me the feeling of not being able to breathe is one of the worst feelings you can have. I had seen it happen to TJ three times. It was terrifying. I quivered at the thought of it happening to him while he was alone. The thought of him struggling to breathe and not being able to get anyone’s attention gave me nightmares.
Initially the baby monitor we bought seemed like a good idea, but the signal proved to be unreliable. TJ’s room was an addition and far away from our room. The signal haphazardly cut in and out of service. Secretly, I was happy it didn’t work because I don’t think I could have left him downstairs by himself with just a monitor anyway. I was too afraid we wouldn’t wake up if he needed us. Not waking up could mean death for him. It just wasn’t worth it.
After rearranging TJ’s room several times in an attempt to find the best configuration for good sight lines from the family room, we finally decided on putting the head of TJ’s hospital bed against the back wall of his bedroom and centering it between the two windows. Beside his bed was a black metal futon with a black and tan cushion for his dad or I to sleep on during the night. It wasn’t comfortable at all. After only a few uses, a deep canyon split the cushion where the futon folded. Why would a furniture designer think a cushion could hold its shape after being folded and laid flat, folded and laid flat repeatedly? It was junk.
Initially my husband Travis and I took turns sleeping in TJ’s room, but I tossed and turned all night, and sleep eluded me. I was always listening for him, always making sure he was breathing. Most nights were spent dozing off only to awaken again a short time later. After much frustration with my inability to sleep, my sweet husband volunteered to stay in TJ’s room every night so I could sleep upstairs. I was relieved. However, even in the comfort of my own bed, I still didn’t sleep well. The underlying anguish of having a sick child just won’t let a parent’s mind rest. Night after night I laid in bed for hours replaying in my mind that first week after surgery in an attempt to solve the mystery of what happened to him. When I was satisfied that I couldn’t make sense of it, my mind inevitably shifted to figuring out what we could do now to improve his life. No matter how much I grappled with turning the thoughts off and giving them to God, I never succeeded at overcoming them.
One particular morning I went downstairs at 5 a.m. to begin TJ’s morning routine while my husband Travis rested. My hope was to get to him before he had an accident, although quite often he was already wet when I got there, soaked actually, and this day was no different. He was wet everywhere, his sheets, blankets, comforter, pillows, pants, shirt, and even in his hair. In an effort to bring some levity to the situation, with a half smile on my face, I asked, “TJ, how on earth do you manage to get pee in your hair, buddy?” He didn’t appreciate my poor attempt at humor. He was embarrassed and humiliated by the incontinence and began wailing as I was trying to wake myself up and tend to him. I reassured him that I wasn’t mad and that I knew he couldn’t help it, but it didn’t matter. He knew how hard it was on us, and he felt like a burden even though I had told him again and again that he wasn’t.
Feeling his wet clothes touching my bare arms and pajamas, I wrestled him up to a standing position in order to help him to the bathroom, which was not an easy task with his lanky, 6 foot 1 inch body that he had no control over. Like pinballs in a pinball machine, we ricocheted off walls and furniture as we made our way to the doorway. I was always afraid of falling and hurting him or hurting myself and pulling a muscle in my back.
I removed his wet clothes and sat him down on the toilet. I hurriedly ran back to the bed and stripped it down. The urine odor was heavy in the room, so I quickly opened his outside door a crack to let in some fresh air. I then raced back to the bathroom, picked his wet clothes up off the floor and added them to the wet bundle I was already carrying. He was still sitting there waiting for me to finish. “I’m sorry, buddy. I’m trying to hurry,” I said. “Give me just a couple more minutes.” I ran to the washing machine and started it as fast as I could. I had to be quick. He was going to start getting cold soon and then would be upset.
After returning to the bathroom and assessing the situation, I concluded that he was too wet to clean up with a washcloth. Preparing myself for the conflict that was about to ensue, I reluctantly told him he was going to have to take a shower. As usual, the wailing started up again, but this time it was even louder. Instinctively I knew the issue was he didn’t want to take a shower right then. He was a grown man and despised always being told what to do and when to do it by his mother. I begged and pleaded with him to stop crying because it was early in the morning and I was so tired even though I already knew I was fighting a losing battle. I knew he wouldn’t be able to stop howling. The brain injury had left him with an inability to control his emotions.
Most everyday this was the scenario that took place, but there were other mornings when the wailing would start up, and I would automatically assume that he was shrieking because he didn’t want to shower. Out of sheer exhaustion, I would scold him for his behavior, and in turn his wailing would escalate even louder after which my scolding would escalate even louder until eventually we were in full blown chaos, only to find out later that the issue was something else entirely. Sometimes he was cold or his trach was bothering him or the water was too hot or something was hurting. Upon learning what the real issue was, guilt then consumed me, and I hated myself for not being more patient with him and for assuming things and not checking with him first. I felt sorry for him that he had to live like this. I felt sorry for myself that I had to live like this.
Other times when his emotions were elevated, he was unable to calm himself enough to finger spell the sign language alphabet and communicate what was wrong. My stress level shot up as I desperately attempted to identify and correct the problem. Not being able to communicate was miserable. It was a level of misery I had never experienced before. We tried and tried to figure out a solution to make things easier for all of us, but nothing worked. As the years went by and the realization set in that this was now our life, it became increasingly harder to shut the hopeless feelings out. We were slowly sinking under the weight the demands of the brain injury created.
On this particular morning after fighting me and attempting to exert his manhood, he eventually conceded and got in the shower. I don’t know why he always fought me. Once he was in the shower, he loved it. The warm water loosened his tight, twisted muscles, and for a little while, his body could relax.
Taking a shower with a trach, however, was no easy task. I was always careful to make sure water wasn’t hitting directly on his trach, and even though we used the trach guard, water would still find its way behind it causing him to violently cough and leaving me with more guilt feelings for not protecting his airway better. His life was incredibly hard, and sometimes I accidentally made it harder.
While he soaked in the shower, I turned my attention back to the bed. I wiped it down with Clorox wipes, remade it as quickly as I could, ran back to the shower, washed him up with Axe shampoo and body wash, which was his favorite because he thought the ladies liked it, and then let him soak again until he signaled by pounding on the wall that he was done. After drying off and wrestling with arm holes and pant legs that twisted limbs don’t easily fit into, we jostled our way back to the bed. I laid him down and threw his warm comforter over him. After spending so much time in hospitals, he had grown fond of the warm blankets from the blanket warmers, so I recreated them at home by using the dryer. As he nestled into his bed and felt the warmth of the comforter surrounding his body, a look of pleasure and contentment finally broke out across his face.
As he rested, I mixed his morning meds with water in med cups and administered them through his G-tube. The meds calmed his twisting down and relaxed his muscles. I couldn’t stand seeing his body tight and his arms twisted up over his head. Sometimes his arms were in positions that didn’t even look human. His shoulders looked like they would dislocate at any moment. Frequently, I counted the hours until it was medication time. For a short time after receiving medication, he would be comfortable. After finding a good show on TV like Dog the Bounty Hunter, which I didn’t consider good but he did, I was finally able to slip away for a few minutes and drink my morning coffee before returning to finish the rest of his cares.
After taking a 15-minute break, I returned and began vest therapy. I wrapped a vest around his chest, and two tubes were inserted into pockets on the vest on one end and connected to an air-pulse generator on the other end. When turned on, the vest inflated, and the generator delivered rapid bursts of air that created a vibration against the chest wall and helped loosen mucus. We ran three 10-minute cycles increasing the settings with each cycle and suctioning the mucus out through his trach as it loosened.
In between cycles I cleaned out his suction machine which was the job that nobody else wanted to do. While cleaning it, I looked away and thought about something else to keep myself from retching. We spent our life chained to that suction machine. It was used multiple times an hour, and we couldn’t go anywhere without it. It was the most crucial piece of equipment he had. People were grossed out by his secretions, and he knew it. He had once been a handsome, outgoing, friendly teenager. The kind of boy any parent would want their daughter to date. Now he had become an untouchable, a leper, a reject that many were uncomfortable being around. Memories of who he used to be played in my head as I watched him now struggle everyday. It was agonizing.
For breakfast I poured his liquid food into a pouch that hung from an IV pole. The pouch was connected to his G-tube with plastic tubing. While eating, his bed had to be at an incline of 30 degrees. If it was lower than 30 degrees, we’d run the risk of aspiration which could cause pneumonia. Sitting at 30 degrees was very difficult for TJ. His body continually fell to the side. Multiple times during his feeding, I wrestled him back up into a sitting position.
While he ate his breakfast, I brushed his teeth which was the job I dreaded most. It was even worse than cleaning the suction machine. TJ had a tough time opening his mouth. His jaw was very tight, and he had little control over it. If by chance he had his mouth open, when anything like a toothbrush or suction catheter got close to it, his jaw rapidly snapped shut. Sometimes his tongue or lips were in the way and would get caught between his teeth. He would squeal in pain while I desperately tried to pry his mouth apart to release them. It was so stressful. Brushing the lower teeth was also a challenge. I had to push down very hard on his lower jaw to keep his mouth open and frantically brush the lower teeth before his mouth snapped shut all the while worrying that the toothpaste would slide down his throat into his lungs and cause an infection. But today everything went smoothly, and I was relieved that brushing his teeth was done.
By this point Travis was awake, and we were ready to tackle our very last chore of the morning routine which was doing site cares on his trach and G-tube and changing his trach strap. The inner cannula of his trach was removed and cleaned with a wire brush, and the skin under the actual trach was cleaned with water and Q-tips. Dressing was inserted under his trach. The skin area around the G-tube was cleaned in the same way, and dressing was also applied.
The hardest part of his trach cares was changing his trach strap, and it required two people. A trach strap is the strap that goes around the neck and holds the trach in place. He hated having his trach strap changed. He fussed and cried and wiggled and fought which made it that much more stressful. While the trach strap was being changed, either Travis or I manually held the trach in place while the other changed the strap. Today, because of his wiggling, the trach came out. I hurriedly inserted the obturator, which is a guide with a point at the end, into the trach, lubed it up, and slid the trach back into his trachea. Travis held him down while I hastily fed the Velcro ties through the tiny holes of his trach and put his replacement trach strap on. Whew! All done and everyone is still alive. Mission accomplished.
Finally, it was 8 a.m. and he was ready for the day. I was covered in secretions and urine, but my morning routine was finished. I then went upstairs to take a shower. Travis had left for the day, so I had to be quick because I didn’t like leaving TJ downstairs alone. Just as I was preparing to get in the shower, I heard the all too familiar wailing sound coming from TJ’s bedroom, the telltale sign which indicated he had had another accident….
This week begins a four-part series on an enormous issue in the brain injury and special needs community: lack of respite care and social support for brain injury and special needs families. It is an issue I personally experienced and one that I repeatedly hear other families are experiencing as well. This issue no longer affects me personally, but I know there are many families still out there buckling under the weight of their daily routines. During this series, my goal is to educate others on the mental, emotional, and physical exhaustion the brain injury and special needs families and caregivers experience on a day-to-day basis and to bring awareness about the kind of support these families desperately need.