It has been a few weeks since my last post, and I’ve received some questions lately as to what’s going on in my life and why I’m not posting. So, I’ve decided it’s time for an update. My MIA status is largely due to the fact that I’m in the middle of writing a book about TJ’s story.
Throughout TJ’s illness, I felt God leading me to write about the experience. About a year ago, I began writing the book, and after completing about 100 pages, I became overwhelmed and disillusioned with the publishing process and stopped. Recently, my husband Travis encouraged me in a round-about way to get back to writing.
After TJ died Travis told me to take a year off to grieve before going back to work. Well, a few months ago, he began leaving hints here and there that a year has come and gone. When he saw my reluctance to begin the job search, he told me if I finished my book, I could wait a little longer. That was all the motivation I needed!
The book is called: The Plans I Have For You; The Story of TJ Denham
I clung to the Bible verse Jeremiah 29:11 throughout TJ’s illness and death. “‘For I know the plans I have for you’, declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future.'” I believed those words and trusted that even with a brain injury, God still had a plan for my son and would give him hope and a future. This verse meant so much to me that it is even on the back of TJ’s headstone.
In hindsight, I believe God’s plans for TJ’s life was to point others to Jesus during his season of suffering with a brain injury. His testimony during that season is powerful, and he is now prosperous and reaping rewards for his faithfulness.
As I’ve been reading over TJ’s Caring Bridge posts, I came across a poem my husband posted several years ago. I love this poem, and it reminds me that what God values is different and better than what I value.
The Prayer of an Unknown Confederate Soldier I asked God for strength that I might achieve. I was made weak that I might learn humbly to obey. I asked for health that I might do greater things. I was given infirmity that I might do better things. I asked for riches that I might be happy. I was given poverty that I might be wise. I asked for power that I might have the praise of men. I was given weakness that I might feel the need of God. I asked for all things that I might enjoy life. I was given life that I might enjoy all things. I got nothing that I asked for, but everything I hoped for. Almost despite myself, my unspoken prayers were answered. I am, among all men, most richly blessed.
I still plan to post on my blog, but it will be sporadic. I’m hoping to send the book to the publisher by the end of the year, Lord willing. God has provided me with an amazing editor, and I’m excited to see what becomes of all this.
During TJ’s first hospitalization at Mayo, his diagnosis was unknown. Doctors felt he became low on oxygen during his heart surgery and had a hypoxic brain injury or a brain stem stroke, but diagnostic studies did not match his symptoms which left everyone puzzled. The unknown of TJ’s condition left Travis and I confused and struggling to find answers. Questions like “What happened to our son?” and “How can we help him if we don’t know what’s wrong?” plagued us day and night.
I had seen TJ walking and talking in Des Moines for a week after his heart surgery, and I just didn’t believe he was as bad as the doctors said he was. Nevertheless, they advised us that he probably would go home with major deficits and we needed to start preparing ourselves for that truth.
TJ was admitted into rehab twice at Mayo, but after just a few days there, his health declined from lung and intestinal infections, and he was sent back to PICU. After four months of battling his brain injury, and constantly bouncing from floor to floor, TJ finally went off to rehab in August of 2013 and finished.
While in rehab, much to everyone’s surprise, TJ began improving rapidly. It was almost as if a light switch in his brain had been flipped on. He was getting stronger and could walk on his own with just one person gently guiding him. He started talking and every once in awhile could blurt out an entire sentence. His eyes were improving, and he was starting to swallow again. TJ’s sense of humor was also back in full force. He enjoyed joking around with his doctors and therapists and was especially fond of tormenting his pediatric physiatrist, Dr. Landry.
Directly across from the bed in TJ’s rehab room was a white board with the names of his rehab doctors and therapists. One morning TJ arose from bed and decided to go for a little stroll across his room. Not knowing what he was up to or where he was going, the nurse’s curiosity was piqued, and she let him lead the way while holding his waist from behind to keep him safe. A very determined TJ, intent on a mischievous mission, walked over to the white board and erased Dr. Landry’s name with his fist. He then picked up the marker, and in its place wrote “Dr. Laundry.”
When I arrived at TJ’s room later that morning, the nurse excitedly and with a few giggles retold the story and added, “I wonder how long he has been lying in that bed, staring at that board, and planning to change Dr. Landry’s name?!”
The news of TJ’s mischief spread across the rehab floor, and much to Dr. Landry’s chagrin, medical staff also began referring to him as Dr. Laundry.
A few days later when Dr. Landry entered TJ’s room for morning rounds, TJ was in the bathroom with his nurse. When TJ heard Dr. Landry’s voice, he picked up the dirty laundry from his bathroom floor, and with his nurse in tow, walked out of the bathroom and threw the dirty laundry at Dr. Landry.
And then the battle was on.
Days afterward, when TJ was walking down the hallway with his physical therapist for afternoon therapy, Dr. Landry, walking a short distance ahead of him, suddenly turned around and began shooting TJ with a Nerf gun which left TJ ducking, dodging, and to his therapist’s dismay, trying to chase Dr. Landry down.
Rehab was a blessed time. It was a time of excitement, laughter, and happiness, and it left us with a lot of fond memories. TJ was improving, and we were hopeful again.
As we were nearing TJ’s discharge date, I discussed what his future would look like with staff. Doctors said they saw no reason why his improving shouldn’t continue. Since he was already doing so well walking, there was no question he would walk on his own again. His speech therapist thought that he would talk again, although his voice might sound different. Swallowing was still very difficult, and his therapist was somewhat concerned but finally gave in and said she thought he would eat again. Doctors thought his eyes would recover but would take up to a year. They felt he would have some coordination issues and things wouldn’t be exactly how they once had been but said he would go to college and do most anything he wanted to do with accommodation.
We were thrilled. TJ was going to have a life again. We had been through four months of uncertainty and unimaginable pain and suffering, but we had gotten through it, and we were excited about the future.
On September 3, 2013, 4-½ months after surgery, TJ was discharged to home, but when we arrived home, after just a couple of days, he began to decline rapidly. His body was starting to do strange things. His arms were twisting into strange positions, and his walking was getting worse and worse. One person couldn’t walk alone with him anymore.
After another 2½-week hospitalization in Des Moines for an intestinal infection, his twisting became so severe that his shoulder was dislocating, his wrist was dislocating, and he was arching his back so bad that it was cutting off his airway. The twisting lasted all day, and the only relief he received was when he slept at night. His suffering was severe, and there was nothing we could do to help him. In early October, I asked for a transfer back to Mayo, so he was loaded up onto a helicopter and flown to Mayo for a second time. After diagnostic testing was completed, doctors were perplexed because according to the MRI, the part of the brain that would cause these movements didn’t show any injury, and they were unable to explain why this was happening.
About a year later, TJ finally came home to live, but he never recovered back to where he was when he left rehab the first time. He was never able to walk on his own again, his arms were twisted over his head most days and unusable, his eyes didn’t move well, swallowing was minimal, his mouth was hard to open, and only twice in four years did we ever hear him speak again.
Many times since, Travis and I have wondered why, after all we had been through, God would give us so much hope in rehab only to take it away again a short time later, and after six years of wondering why, we still don’t know the answer to that question.
If I didn’t know God better, I could easily mistake the reason for His silence and believe that He is a cruel, uncaring, detached God who must not love me.
However, that is not the God I know.
Because the God I know says He loves me with an everlasting love. (Jeremiah 31:3)
The God I know leads me in paths of righteousness. (Psalm 23)
The God I know sent his Son Jesus to die so I could have eternal life. (John 3:16)
The God I know calls me His child. (1 John 3:1)
The God I know says He walks beside me through the valley. (Psalm 23:4)
The God I know says He will be with me always, even to the end of the age. (Matthew 28:20)
That is the God I know, and He is God Almighty.
What about you? Do you sometimes feel God is silent and aloof while your heart is breaking? Or do you sometimes doubt that God is good because tragedy has struck and your questions about why are going unanswered?
Many times during TJ’s illness, God showed me that He was with me and was walking right beside me, but there were also long stretches of time when I couldn’t feel the Lord’s presence, when I was confused and felt all alone. So what do we do in those times when we can’t feel God there?
We trust and believe God’s Word.
Because God says over and over again in the scriptures that He loves us and is with us, we can rest assured that He is, whether we feel His presence or not. Even Job, whom God called blameless and upright and one who feared God and shunned evil (Job 1:8), was struck with tragedy and unanswered questions while God remained silent. So if even upright and blameless Job experienced God’s stillness during tragedy, then we must expect that we will too. If we always felt God’s presence and always had all the answers, then how would our faith ever grow?
In times of valley walking, trust that God loves you and is there. Remind yourself often of times when You did feel Him walking beside you, and then you will find rest, strength, and courage to face another day.
“And He said, ‘My presence will go with you,and I will give you rest.’” Exodus 33:14
Deuteronomy 34:4 “Then the LORD said to him, ‘This is the land I promised on oath to Abraham, Isaac, and Jacob when I said, ‘I will give it to your descendants.’ I have let you see it with your eyes, but you will not cross over into it.’”
As TJ’s second birthday without him is fast approaching, I’ve been reminiscing lately about how we spent his first birthday without him. Last year in July, we went on our first ever family vacation which included nana and papa, daughters, sons-in-law, granddaughters, and grandsons. When all of us are together, we number 21 in total.
We found a very large house in Salt Lake City, Utah to accommodate us. It was nestled into the side of a mountain and had five bedrooms, one of which was a bunk bed room for all of the little gremlins; a media room with a big screen for watching movies; and a giant game room which was any child’s–or husband’s–dream.
We chose the beautiful Salt Lake City for our vacation destination last year because it was a good halfway point with our daughter Whitney who lives in Washington state. I had never been to Salt Lake City before and was taken aback by the beauty of it. The city is located at the base of the Wasatch Mountains on the east with the Great Salt Lake across the valley to the west. I enjoyed my morning walks along the edge of the mountain looking out across the city below to the view of the Great Salt Lake in the distance. It was breathtaking.
Our fourth day there was TJ’s birthday. After shedding a few tears in the morning and doing crafts and baking cookies with the grand kids all afternoon, the plan that evening was to release sky lanterns in memory of TJ. I had been imagining this event in my mind for months. I pictured releasing them by a lake with beautiful mountain scenery surrounding it. All of us would be standing together with our smiling faces turned upward and maybe some tears streaming down our cheeks as the sky lanterns all floated away together. The kids would be cheering with joy on their faces as they watched the lanterns light up the sky. Everybody would be happy and thinking about TJ, and I imagined TJ looking down from heaven with a big, peaceful smile on his face.
But that is totally not what happened.
Early in the day, my husband drove around the city scouting out the landscape looking for the perfect place to release the lanterns. That evening as our caravan of cars arrived at the location he had chosen, I gave him a thumbs up and complimented his choice. It was a beautiful location. It was a flat, park-like setting with a pond of water nearby with vegetation growing around it, and mountains were standing tall in the distance. It looked perfect…..but looks can be deceiving.
It wasn’t until we got out of our cars that we began to realize the water close by was stagnant and the mosquitoes were insane–like nothing we had ever experienced before. Almost immediately we were attacked by a swarm of mosquitoes. As we were flailing our arms to defend ourselves, most of the younger kids began wailing at the top of their lungs and frantically scratching their arms and legs. We hurriedly scattered and turned our attention toward the children. In the background, while we were running, I could hear our son-in-law Matt yelling, “Why was this place chosen?!”
After tending to the screaming children, still undeterred and doing our best to ignore the bites, we proceeded with TJ’s birthday celebration. We started lighting the lanterns, but almost immediately we began experiencing more problems. The lanterns weren’t easy to light and were catching on fire. Pockets of fire were scattered around the park. Our son-in-law Ben, concerned about the police being called, was running around like a mad man putting the fires out with small drinking bottles of water. The lanterns that didn’t catch on fire wouldn’t rise. Our daughters were running after their lanterns that were hovering at eye level blowing and flapping their arms wildly in an attempt to get them to fly. After the last lantern was lit and burst into flames, we counted them up, and only 3 of the 26 lanterns actually flew. The rest were burning in a heap on the ground. We then cleaned up the mess, put all the fires out, hurriedly escaped to our cars, comforted the bawling children, and drove away as fast as we could, scratching our bites all the way home.
My deceased son’s first birthday celebration without him was an utter disaster.
To onlookers, this couldn’t have looked like a family who was honoring their son who had recently passed away. This looked like pandemonium and irresponsibility for lighting lanterns in the hot, dry climate of Salt Lake City. Coming from the green, rolling hills of humid Iowa where releasing sky lanterns is legal, it never occurred to any of us until the fires began that lighting lanterns in a hot, dry climate wasn’t a real smart idea…..or even legal.
In my younger years, I would have been devastated that my son’s first birthday celebration after his death was a complete catastrophe, but now in my older years, I’ve learned a few things. I’ve learned that sometimes when things don’t go as planned, it still can be beautiful. The morning after our disastrous evening, we sure enjoyed sitting around recounting the night and laughing hysterically at our foolishness. In the wake of the devastating tragedy of losing TJ that cut each one of us to the core, it was a much needed family bonding moment. We came to the conclusion that if TJ could have seen it, he would be laughing as well at his crazy family. In fact, he would have enjoyed seeing our mosquito-infested, tumultuous evening way more than the tear-filled, sappy celebration I had envisioned in my mind.
What about you? Have you had times when things didn’t turn out as you had envisioned? Have some of your dreams ended in disaster and you just weren’t sure how to pick up the broken pieces and carry on?
During my Bible study time the day prior to the birthday celebration, I read about Moses. Moses led God’s people out of slavery in Egypt. Numbers 20 says that in the first month after leaving Egypt, the community arrived at the Desert of Zin. There was no water for the community, and the people began to quarrel with Moses. Moses and Aaron then went to the entrance to the Tent of Meeting and fell face down, and the glory of the Lord appeared to them. The Lord told Moses to take the rod and speak to the rock and water would pour out. But Moses instead struck the rock twice with the rod and then spoke harshly to the community. Despite Moses’s disobedience and because the people needed water, the Lord still provided abundantly for the people and water gushed out of the rock, and the community and their livestock drank, but the Lord told Moses that because he didn’t trust Him enough, he would not bring the community into the land the Lord would give them.
Because of God’s Holiness, His correction of Moses was hard…and deserved. Moses was a leader and leaders are judged by a higher standard. All of his life, even since he was an infant, Moses was being prepared to deliver God’s people from Egypt and bring them into the Promised Land. I wonder as Moses grew, when he heard the miraculous story about how Pharaoh’s daughter plucked him out of the Nile River while the other Hebrew babies were murdered, if he knew his life had been saved for a special purpose? I wonder as Moses played and ran through the palaces of Egypt as a child, if he could feel God’s calling on his life and knew that there was something God had planned for him to do? I wonder while Moses was in Midian, if he came to realize that he was there so God could continue to mature him before He sent him out before Pharaoh? I wonder how many times while bringing the people out of Egypt Moses had dreamed of the day when he and the whole community would set foot on the soil of the Promised Land? But now because of his own disobedience, Moses would not lead the people into the Promised Land and another person would finish the job. How unbelievably disappointed Moses must have felt.
After leaving Egypt, because of disobedience, the community wandered in the desert for 40 years, and then the time finally came to enter the Promised Land. The baton had been passed from Moses to Joshua, and Joshua would lead the community into the Promised Land. In the 34th chapter of Deuteronomy, the Lord took Moses high up on a mountain and showed him the whole land that He had promised to Abraham, Isaac, and Jacob. Then Moses died and the Lord buried him. A tender, loving, gracious Father allowed Moses to see the Promised Land with his own two eyes and then privately buried His faithful servant Himself in an unmarked grave.
Maybe God said no to your prayers and hopes and dreams, and life hasn’t turned out for you like you had planned. Moses’s hopes and dreams didn’t turn out like he had planned either…..but here’s the beautiful part about Moses’s story. A short time after Moses was forbidden from entering the Promised Land, God took him home to an eternal life with Him forever. The loss of not being able to enter the Promised Land was only momentary, temporary, and for those of us who are in Christ, the same is true for us. God will also take us home to an eternal life with Him forever as well, and these disappointments and losses that we experienced here on this earth will become a faded memory.
This year for TJ’s 23rd birthday celebration, we are headed out on our second annual family vacation, but this time to Breckenridge, Colorado. We are minus two daughters and their families due to scheduling conflicts and distance. We are foregoing the sky lanterns this year–surprise, surprise–and are in the process of brainstorming a new way to memorialize TJ’s birthday. You will hear all about it in an upcoming blog post in a few weeks.
“And it will be that you shall drink from the brook, and I have commanded the ravens to feed you there.” 1 Kings 17:4
After sustaining his brain injury, my son TJ was in and out of hospitals and rehab centers for 19 months before he finally came home. Once I heard a doctor, in disbelief, remark about the great amount of time that TJ had spent in the hospital, which led me to believe that it was something they didn’t see very often. The doctor then went on to state that they needed to get us home because we had spent way too much time there. But the truth was, even though it may sound strange to many people, the hospital really wasn’t all that bad. In fact, when TJ’s discharge date at Mayo was approaching, I tried persuading the doctors with various reasons of why they needed to keep him longer. Of course, it didn’t work, but I thought it was worth a try.
The hospital provided for TJ medically of course, but the hospital also played another important role in our lives. It was our social life. I’m not sure exactly when it happened, but at some point during our stay, the medical staff shifted from not only being his medical providers but to being our friends. Even though we were cut off from the outside world, it didn’t matter because inside the hospital there were people everywhere at all hours of the day, and they understood better than anyone the journey we were on. And dare I say that during TJ’s healthier hospitalization times, he even had some fun. One of my fondest memories of him in the hospital was the way he broke in new nurses. Oftentimes they were young, and upon seeing their fresh, new face, a little smile would break out across his lips, and instantly I knew what was coming. While the new nurse was being given his bedside report from the nurse whose shift was over, he would pretend he was going into respiratory failure and start thrashing around on his bed. Then when the new nurse became wide-eyed and nervous, he would finally stop his antics and begin laughing.
In the hospital TJ was very well taken care of, and I was able to just be his mom. We were surrounded by friendly, caring, supportive people, and help was just a call button push away. Why would we ever want to leave? After being hospitalized for so long, the world beyond the hospital walls had become too scary to live in in our new-normal state. I was content to just stay there.
But eventually TJ did come home…….and then we were isolated. Gone were the days of the hustle and bustle of the hospital and the friendships we made there. We sat at home by ourselves day after day because we learned after he came home that it was very difficult to go out into the community with a chronically ill person. Packing everything beforehand was exhausting. Finding wide enough parking spaces for the wheelchair lift could be difficult. Equipment and wheelchairs sometimes malfunctioned and left us stranded. Some stores were difficult to maneuver a wheelchair in like GameStop, my worst nightmare for many reasons. Friend’s and family’s homes were difficult or impossible to enter. Restroom use and the fear of accidents was always stressful. Do we use the Men’s? Do we use the Women’s? And if I’m alone what do I do with him if I have to go? Suctioning the trach in the movie theater and annoying others during a movie caused anxiety. It was loud and sometimes needed to be done multiple times an hour. Yes, sometimes it was easier to just stay home where it was most comfortable. But staying home all the time also becomes depressing. We had little contact with other people. The darkness was growing in all around us, and we were feeling lonelier and lonelier.
We hadn’t been to church in months either. He couldn’t sit through a service in his wheelchair without getting uncomfortable, and, of course, we were nervous about suctioning his trach. Attending the youth group like he used to wasn’t an option anymore. We didn’t know where we fit in. We didn’t know where we belonged, so we just stayed home. We were in a drought, and it seemed like it would never end.
But then one day I heard my doorbell ring. I opened it to see a pretty, blonde-haired woman standing there with a bouquet of flowers in her hand. She stated her name was Beth and she was from the Hand in Hand Ministry at Valley Church, so I invited her in. She said she had heard about us and wanted to share about Valley Church and the special needs ministry and invite us to attend. She told me she would provide a buddy for TJ who would even suction his trach so we could attend church. I could feel the excitement welling up inside of me, and I was overjoyed. I knew God had sent her. She was a raven sent by God to provide spiritual nourishment and a place to belong and be loved.
The prophet Elijah also knows what it’s like to live through a drought. Let’s read in 1 Kings about his experience and how God provided for him.
1 Kings 17:1-7 “And Elijah the Tishbite, of the inhabitants of Gilead, said to Ahab, ‘As the Lord God of Israel lives, before whom I stand, there shall not be dew nor rain these years, except at my word.’ Then the word of the Lord came to him, saying, ‘Get away from here and turn eastward, andhide by the Brook Cherith, which flows into the Jordan. And it will be that you shall drink from the brook, and I have commanded the ravens to feed you there.’
“So he went and did according to the word of the Lord, for he went and stayed by the Brook Cherith, which flows into the Jordan. The ravens brought him bread and meat in the morning, and bread and meat in the evening; and he drank from the brook. And it happened after a while that the brook dried up, because there had been no rain in the land.”
So let’s unpack this a little. Ahab was an evil king, and he did more to provoke the Lord than all the kings of Israel who were before him. His government formally promoted and worshiped the false god Baal. It seemed as though the worship of the one true God would be eradicated throughout the land of the northern kingdom Israel. But then Elijah came on the scene. Elijah was a man of God and told Ahab that there would be a drought in the land……And then it happened. Baal was thought to be the sky god, the god of the weather, and Elijah’s dramatic prediction flew in the face of Baal and proved that his God Yahweh was more powerful than Baal. Elijah’s life was now in danger, so God told him to get away and hide by the Brook Cherith. And while he was staying by the Brook Cherith, the Lord sent the ravens to provide for him, until the time came when the drought dried up the brook and the Lord moved him on.
Sometimes in our life, there are times when we too are in a drought and are sent by God to hide by the brook and be alone with Him. Droughts can come in various forms. The drought of illness. The drought of divorce. The drought of the death of a loved one. The drought of the child who is never born. During the droughts of life, it can feel very lonely and few may understand what you are going through. Oftentimes the Lord sends us to a place where we can escape the drought and where He can show His loving kindness to us by providing for us and hiding us from the bustling activity of society that constantly attempts to drown out His voice. Although it may not feel like it, the lonely brook He sends us to is a place of safety. It is by the peaceful brook where we quiet our hearts and focus on the Lord and where He becomes our only friend.
During the quiet times when we are hiding by the brook, our focus should be on looking for the ways in which God is providing for us. Just as He sent ravens to Elijah in a miraculous way to feed him with meat and bread, we can be sure that He is providing for us in miraculous ways as well.
The word “Cherith” in the ancient Hebrew root means to “cut away, to cut up or off.” God could have sent Elijah anywhere He chose, but He chose the Brook Cherith for a reason. During our time when the Lord sends us to reside by the brook, not only is He showing His tender loving mercy toward us and providing for us, but He is also cutting away the sin in our life so He can use us in even greater ways. He loves us too much to leave us in our current state. Maybe He’s cutting away a dependence on people instead of Him. Or maybe He’s cutting away a stronghold in your life that you just can’t get free from. Maybe He’s cutting away laziness that is causing a staleness in your spiritual life. Whatever it is that He is at work doing, we can rest assured that one day when His cutting away time is accomplished, He will move us on.
Just as the Lord provided manna for the children of Israel in the wilderness, meat and bread from the ravens for Elijah, and multiplied loaves of bread and fish for the hungry, He will provide for you while you are in your drought. God cares about His people and will provide for them. You need only to be still and obey and rest in His presence.
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.
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.