Trapped Within is the true story of what a teenage boy was compelled to endure as the result of a surgical procedure that went wrong and what his family learned from the experience. Kelly Denham, the boy’s mother, tells the story of when God’s unfailing love met unimaginable suffering.
During the years her son was ill, Kelly Denham kept a journal of daily events and later brought the story to life as she processed her own healing. Trapped Within takes readers on a journey with many ups and downs but ultimately leads them to God’s promise that our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.
Throughout the pages of Trapped Within, readers will wonder how this family endured such tragedy. There are moments of laughter and joy and moments of pain and sorrow. Faith is tested, tears are shed, and grief is shared, bringing readers full circle to the encouraging hope of God’s healing.
Excerpt from Trapped Within:
TJ’s youth pastor and kids from his youth group came back to the room to show their support. They briefly visited with him and then went to the OR waiting room for the long wait. Travis and I stayed with TJ until we were shooed out. As we were leaving the room, I turned around to take one last look at him. He was lying on the gurney making a silly face at me, so I snapped a picture. That would be the last time I ever saw my son whole.
As we walked down the hallway to the waiting room, fear suddenly overcame me. My mind ran the gamut of what ifs, and I burst into tears. Then I became upset with myself for being so dramatic and reassured myself, “They do this all the time. He’s going to be fine. Get it together.” However, unbeknownst to us, our descent into hell had already begun.
Kelly Denham’s hope for readers is that they’ll understand what God’s love truly means and that even in times of suffering and loss, His love never fails.
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 titled Trapped Within
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 heart surgery and had a hypoxic brain injury or a brainstem stroke, but diagnostic studies did not match his symptoms. Doctors were puzzled. TJ’s unknown condition tormented Travis and me. 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.
Since I had seen TJ walking and talking in Des Moines for a week after his heart surgery, I truly didn’t believe he was as bad as the doctors at Mayo 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. After just a few days there, his health declined from lung and intestinal infections, and he unfortunately 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 for a third time 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. In its place he 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 improvement 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. His therapist was somewhat reluctant to say he would eat again but finally gave in. 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. We were excited about the future.
On September 3, 2013 four-and-a-half 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. One person couldn’t walk alone with him anymore.
After another two-and-a-half-week hospitalization in Des Moines for an intestinal infection, his twisting became so severe that his shoulder and wrist were dislocating and he was arching his back so bad that it was cutting off his airway. The twisting lasted all day. The only time he received relief 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. Doctors were unable to explain why this was happening.
About a year later, TJ finally came home to live, but he never recovered back to his prior condition at Mayo. 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. 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. However, there were also long stretches of time when I felt alone and couldn’t feel the Lord’s presence. What do we do during the times when we don’t feel God near?
We trust and believe God’s Word.
Because God says repeatedly in the scriptures that He loves us and is present, 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 feel God’s presence and know 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. 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 approaching, I’ve been reminiscing 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 its beauty. 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 grandkids 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 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, flat, park-like setting with a pond of water nearby. Vegetation surrounded the pond, and mountains were standing tall in the distance. The site was perfect — but looks can be deceiving.
When we exited our cars, we realized 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 our arms flailed to defend ourselves, most of the younger kids began to wail at the top of their lungs and frantically scratched 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, became concerned that the police would be called, so he ran around like a madman 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. 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, 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.
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 awakened this morning while it was still dark outside and the house was quiet. I have always been an early riser. As I sauntered down the stairs, 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. Ben had noticed my sleeping habits while we were on vacation and was thrilled to see that they resulted in a beautiful breakfast buffet awaiting 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 the Coffee Mate Snickers flavor from the refrigerator, and began filling the coffee pot with water. I love my morning coffee. It is oftentimes the first thing on my mind when I awaken in the morning and 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 the Moms’ Group that I lead. I stopped on one Bible study in particular titled “Held: Learning to Live in God’s Grip.” As I was reading, 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 and remind me about the short-term nature of life’s pain and suffering. Below are the verses 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 materials spread across the table and my coffee cup in hand, I pondered life for awhile and thought how every single one of us on this earth suffers. Of course we hate it and try our best to avoid it, but, sadly, no one escapes it. People we love become sick, marriages fall apart, kids rebel and make bad choices, spouses lose their job or get hurt and become disabled. 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 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 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.
Respite was our biggest need during the three years that TJ lived at home. We 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, provide care to TJ ourselves and receive payment from the state. Two, place 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 provide care. As his paid care provider, we were not given any respite services from the state. There was a small amount of respite available from Medicaid, but because TJ had a trach and needed skilled care, they could not provide staffing.
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. 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 who feel like they get enough respite on their waivers and sometimes don’t even use all of their allotted respite. However, 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 children with special needs 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 and that she had missed the deadline for the time to respond. She was told 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 it has been cancelled due to a lack of volunteers.
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. Providing care to their son is becoming too difficult for them physically. Her son uses a ventilator at night when he sleeps. She is terrified of what could happen to him if he is placed in a nursing facility.
Another friend cares for her loved one with a brain injury 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 cognitive issues. Because he is frustrated from not being able to communicate, he screams all day. By the end of the week, she says she is about to lose her mind. They have applied to be on a waiver. 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, 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, consider discussing with church leadership the possibility of starting a ministry.
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 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 receive for weeks. It was a time when we could turn off being on call, enjoy alone time together, and 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 two Sundays a month. Frequently, I buddy with a 9-year-old boy with Down’s syndrome. Every morning when I walk into the classroom, an enormous smile breaks out across his face. He runs and throws his arms around me. We walk hand in hand to his classroom. During music time, I stand quietly by and watch him enjoy worship. My heart sometimes feels like it will explode. I am overfilled with joy watching him sing and dance. Afterward we break into small groups. I may 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 at the end of group time, he becomes 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 extremely blessed from the privilege of being his buddy. This is a good example of what to 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 a 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 children 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. Consider volunteering for once-a-year events like 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.
During the week, the respite home would be used for training opportunities for people with special needs. The home would provide classes for cooking, lawn care, folding clothes, woodworking, crochet, karate, etc. The home could also be used as a place of employment that gives opportunities for people with special needs to work while being supervised. The home 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 post 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.
Isaiah 30:21 “Whether you turn to the right or to the left, your ears will hear a voice behind you, saying, ‘This is the way; walk in it.’”
My son TJ was discharged from Mayo Clinic the first time on September 3, 2013, after a four-month hospitalization. Despite his very complicated medical condition, our plan was to take care of him at home. He was 17 years old and still a child. He had been through a harrowing experience, and I wanted him to have the comfort that only being at home could provide. I couldn’t bear the thought of placing him into a care facility after all he had been through.
During our stay at Mayo, the medical staff was very focused on training parents on how to take care of their children with medical problems. As I stated in earlier posts, I despised learning and didn’t appreciate being forced by the medical staff. My hope was that if I held off long enough, he would get better, and I wouldn’t even need to learn his healthcare routine. But after being told that he wasn’t getting out of PICU until I learned, I begrudgingly started working on checking off the boxes of my to-do list which included daunting tasks such as changing a trach three times and CPR training. After completing all the tasks, I decided I had had enough and I wasn’t going to do any more of it until we got home.
The next morning when I walked into TJ’s room, after updating me on TJ’s night, the nurse told me that I needed to do his morning site cares. Site cares involved cleaning around his trach and G-tube with Q-tips and changing the dressing. I had already checked my three boxes off for having done site cares, and I felt that I knew how to do it good enough. Upon hearing her instruction, I immediately started bawling and exclaimed, “I’ve done my three times already and I can’t do any more! I’m tired! There are other things going on in my life right now that you don’t know about!” She said, “Well, you still need to be doing them. You can’t just stop. You’ve got to keep practicing.” I turned my head away and looked out the window, and the room got very quiet after that.
What were those things that were going on? Well, I was grief stricken and heartbroken, and my body was beyond exhaustion. I wasn’t getting much sleep. I tossed and turned every night wondering if my son was going to get better. I wondered what kind of life he was going to have and how we were going to live like this. I went over and over in my mind his decline that first week trying to figure out what had gone wrong. Even doing 5 minutes of site cares seemed to be too overwhelming.
The nurse began to do his site cares then and gave me a break, but my relationship with her was never the same after that. She was quiet around me and didn’t make eye contact with me anymore which bothered me. Looking back, if I could go back to that day, knowing what I know now but also remembering how I felt then, I still don’t know I could have reacted any other way. However, what I would tell that nurse now is, “Thank you for pushing me. Thank you for putting up with me. Thank you for making me learn how to take care of my son. Don’t ever stop pushing parents when they protest and give you a hard time. What you are doing is so important.” Once we got TJ home, I began to realize just how vital those skills were and how the medical staff at Mayo knew that.
Several months later, my son was admitted into a brain injury rehab facility. Most days I stayed with him all day and went home at night to sleep. Early in his stay there, one afternoon I heard the all too familiar sound of his trach gurgling which meant it needed suctioned. While the nurse was in the room, not even thinking twice about it, I jumped up and began suctioning. I looked up, and the nurse was standing there stunned with eyes wide open. I asked, “What’s wrong? Did I do something wrong?” and she said, “I have never had a family do that before.” That was when I first began to understand what a rarity our knowledge was.
TJ also had a G-tube. Once in awhile it would get clogged, and I would be unable to get it cleared. We would then load up in the van, go to the hospital to Interventional Radiology, and sit there for hours until they removed it, put a new one in, and then x-rayed it to make sure it was in the right place. I hated going down there and sitting all day. It was uncomfortable and hard for TJ to sit in his wheelchair that long, so I decided I would just have extras available at home and I would do it myself. I thought if I can change a trach, then I certainly can change a G-tube. The only thing I couldn’t do was x-ray it, but I decided we would be okay, although I figured a doctor would probably disagree with that.
A few months later TJ had an appointment with the GI doctor. When he asked me how often the G-tube gets changed and who changes it, I was afraid to tell him that I was the one who had been changing it and wasn’t getting it x-rayed. I reluctantly confessed to him that it was me and prepared myself for the scolding I was about to receive. He then said, “You’re doing it? That’s wonderful! I never have patient’s families do that! You’re doing a great job!” A feeling of relief washed over me, and I once again realized how unusual our medical knowledge was.
Another time toward the end of TJ’s life when he was in the hospital with pneumonia, a pulmonologist came in to talk to me. As we went over TJ’s symptoms and treatment, the doctor commended me on the great care we had been giving him. He said, “He hasn’t been in the hospital for two years which means you are doing a very good job taking care of his lungs.” Upon hearing this, I was beaming inside and knew it was because of the training I had received at Mayo.
Many times since that initial brain injury in 2013, I have thanked the Lord for his guidance during our son’s illness. Even though this terrible disaster had occurred, the Lord was with us every step of the way, taking care of us, and pointing us in the direction we needed to go. Life flighting TJ to Mayo was the best decision we ever made in those early days after tragedy struck, and I am thankful that the Lord put people around us who encouraged us to go there. I am thankful that God had provided Travis with a job that had impressive health insurance that allowed us to life flight TJ to Mayo in the first place. I am also thankful for the medical staff in Rochester who greatly care about the people they treat and are in the trenches battling with you at the time when you need them the most.
There are times in our lives when God leads us into things that we don’t want to do. I didn’t want to learn my son’s medical care, but I’m so glad I did. My life was richer because of it, and I was able to spend three years with him at home. Because of the battle we were in together, the bond between TJ and I grew strong, and it was hard for us to be separated from one another. I hugged and held hands with my 21-year-old son every single day. There are not many mothers who get to do that. I was very blessed, and I am looking forward to the day when we are together again.
“A friend loves at all times, and a brother is born for a time of adversity.” Proverbs 17:17
Ambiguous Loss. That is a term you’ve probably never heard before. What does it mean? In the 1970s Dr. Pauline Boss, a professor emeritus from the University of Minnesota and an educator and researcher, introduced the term “ambiguous loss.” She describes the term in her book Loss, Trauma and Resilience as “an unclear loss that defies closure.” She goes on to say that “ambiguous loss is the most stressful kind of loss. It defies resolution and creates long-term confusion about who is in or out of a particular couple or family. With death, there is official certification of loss, and mourning rituals allow one to say goodbye. With ambiguous loss, none of these markers exists.”
She did not say that ambiguous loss is the most painful of all losses. Because let’s face it, loss is loss and it all hurts. Ambiguous loss, however, is unique in that it is an “extraordinary stressor — a producer of uncanny anxiety and unending stress that blocks coping and understanding. It freezes the grief process and defies resolution. It understandably encourages denial of loss. It can lead to immobilization and more crises.” (Boss) Ambiguous loss is loss that is seen in families traumatized by war, terrorism, natural disasters, and chronic illnesses and disabilities. The brain injured, the stroke victim, the Alzheimer’s patient as well as the kidnapped or imprisoned also fall into this category. In my own words, it is hell on earth.
Caring for a child with a brain injury can be a lonely road. There are few who understand. We were suffering from a strange phenomenon that I termed “living in between life and death.” He wasn’t dead, although in some ways it felt like he died the day of his surgery. However, he wasn’t alive either — not really alive, just existing. The person he had once been was a thing of the past. Living in between life and death is an excruciatingly painful place to be. Twice I sought help from different Christian counselors. My hope was to process the grief with someone who understood, but after a few sessions, I was even more frustrated than when I began. I realized that unless a counselor has specific training in brain injury grief and loss, he does not understand the uniqueness and complexity of the pain.
In an article written in Brain Injury Journey magazine, Janelle Breese Biagioni, RPC, states, “Then we have what I identify as extraordinary grief resulting from a disease such as Alzheimer’s or a catastrophic injury such as a brain injury. This kind of grief is profound. People must grieve who they were, and the family also grieves the person who is no longer there, albeit physically present. Sadly, I think society as a whole is only beginning to understand how profound this type of grief is.”
So, if most counselors don’t fully understand brain injury grief and loss, then how can the friend of a mother of a brain injury victim understand it?
Well, the answer is — they can’t. During the years my son lived with a brain injury, I heard repeatedly how hard it is to be the friend of a person who has experienced this kind of tragedy. I have seen people struggling about whether to bring it up or not bring it up. If they do bring it up, they don’t know what to say because they fear they may say the wrong thing and cause more hurt. I came to the conclusion that is why some do and say nothing and avoid the injured altogether. While it is very understandable why some would react this way, it probably is not the best way to handle it. Handling it this way actually causes the injured more loneliness and pain. Exiting their life translates to “I don’t care about you” even though that may not be true.
How do you relate to the mother of a child who has a brain injury? I believe the first and most important thing is to stay in their life even though it’s hard. It’s not necessary to be there daily or even weekly, but it helps if you just check in from time to time, like once a month, so they know you care. It can be something as simple as sending a text. I had no shortage of friends in my life while my son was alive, and I am grateful for every one of them. Many checked in on me often, took me to coffee or lunch, or just simply sat on the couch and cried with me. They were one of God’s many blessings during that time. I knew I was loved and cared for.
The second most important thing is don’t judge them or what they talk about. There were many times when I probably sounded irrational to some. There were times I was stuck in certain areas of the grieving process like anger, the never-ending pursuit of trying to find answers, or the most painful of all, the loss and change in TJ’s social standing. Although I may have sounded unreasonable, it really was a normal reaction to an abnormal situation. Many times when we don’t understand or haven’t experienced a situation before, we make judgments of others that they’re irrational, frustrating, feeling sorry for themselves, complaining, etc., but in reality these reactions are normal and have to be processed so the one experiencing the trauma can learn to cope with ambiguous loss.
The best thing the friend can do is just listen and say things like, “I’m so sorry this happened to you,” “I can’t imagine how hard this would be,” “I can understand why you would feel that way,” “I just want to be here for you and be a listening ear.” Part of the healing process for the one suffering is being able to talk about it without being judged for the way one feels. If they’re angry, let them be angry. If they’re frustrated, let them be frustrated. If they’re sad, let them be sad. Allow the one suffering to feel the way they feel without correcting them. Over time, as they process through their feelings, they will figure out what they need to do differently themselves. Understand this process can’t be sped up, and there is absolutely nothing you can say that will heal the hurt and make it all better. You are not there to solve the problem; you are just there to be a listener.
My friend Amber did an amazing job at being my friend during the course of TJ’s brain injury. Once a month for three years she showed up with two Starbucks coffees in hand, one for me and one for her. During each visit, she sat and talked with me for a couple of hours. She let me talk about my grief, sadness, and my frustrations. She also shared what was going on in her life which helped me feel connected to the outside world. It couldn’t have been easy for her. My problems were heavy, chronic, confusing, and long term, but she stayed by me, loved me, and truly modeled what being the hands and feet of Jesus looks like. She was a gift from God and was very wise at knowing how to be the friend of a mother with a son with a brain injury.
On April 22, 2013, my 16-year-old son, TJ, underwent heart surgery to repair a newly-diagnosed heart defect. He woke up from that surgery with an abundance of medical problems. At that time doctors were unable to diagnose him, so my husband and I made the decision to transfer him to a higher level of care hospital. On May 10, 2013, TJ was flown to Mayo Clinic in Rochester, Minnesota and admitted to the PICU at St. Mary’s Hospital.
I had been told that Mayo was one of the world’s best hospitals. Upon arrival, I had hope that doctors would quickly figure out what was wrong with my son, fix him, and send him home so we could get back to our lives. But that is not what happened.
One of the first doctors I met was Dr. Steele. She is a pediatric intensivist at St. Mary’s Hospital. Initially I did not like her, and every time I saw her coming, I wanted to run. She said things like, “Your son is very sick, and his lungs have taken a beating.” “We think he may have had a brainstem stroke.” “He may never get off a vent.” Her words felt cold and harsh. Most times after speaking with her, I felt like she had just punched me in the gut. I wanted to throw up. “Doesn’t she care how much this is hurting me?” I thought. I wanted her to tell me that my son was going to be okay and that he was going to go to college, get married, and have children like I had planned. But she didn’t tell me that. No matter how hard I tried to get her to tell me that everything was going to be okay, she just wouldn’t say it.
After a couple of months in the PICU with many ups and downs, TJ started to improve. During evening rounds, I walked into TJ’s room and found Dr. Steele throwing a ball back and forth with him. She was laughing, and I could tell she was delighted to see his progress. My heart started warming up to her just a little.
One evening I had questions for her that I didn’t want TJ to hear. She took me into another room and spent quite a bit of time explaining to me what had happened to him. By this time I had started accepting TJ’s brain injury, and I was beginning to handle bad news a little better. I could now talk more openly without getting defensive. I appreciated her spending so much time with me and teaching me about my son’s medical condition.
Over time I could tell that she was genuinely sad about what had happened to TJ. When she learned he had been a drummer, in an effort to bring him some quality of life, she had her husband come in and play his guitar for him. My heart warmed up to her a little bit more.
Finally, after two and a half months, TJ had improved enough to be discharged from PICU and transferred to the rehab floor. The medical staff told me that in order for him to be discharged, I had to change his trach three times, clean the trach, and learn how to suction it. I absolutely did not want to learn. I had never wanted to be a nurse in my life. I had watched TJ have three respiratory failures, and I was terrified of his trach. I wanted them to fix him and get him back to the way he was. So, I half-heartedly tried to learn. When the nurses noticed my lackluster efforts, Dr. Steele showed up and had a talk with me: “You need to learn. You have it a lot easier than some of the other parents around here do. They’ve got babies with trachs and the trachs are tiny.” After that I decided I didn’t like her anymore.
Soon after eventually learning all of my tasks, TJ was finally discharged to rehab. When we were leaving, Dr. Steele said, “TJ, I don’t want to see you again until you walk through that door.” I made a mental note and was determined that when he was up and walking again, we would come back to the PICU and show her how much he had improved.
However, we did not stay in rehab long. TJ became very ill, and we were sent back into the hospital. After two more months of bouncing around the hospital with many peaks and valleys, we finally made it to rehab and stayed in rehab. TJ began to improve greatly. He was walking with a walker, so toward the end of our three-week stint in rehab, TJ and I, along with his physical therapist, trekked down the hall to the PICU. When TJ walked through the door, we saw Dr. Steele standing on the opposite side of the room. Upon seeing him, her jaw dropped to the floor. She came straight to us and exclaimed, “I’m so happy for you!” There was much joy and excitement. And I began to really like her again.
A couple of days before TJ was discharged from rehab to home, Dr. Steele was sitting at a desk outside of TJ’s room. I was excited to see her sitting there, and I went out to talk to her.
“You used to make me so mad,” I said with a grin.
“Why? What did I do?” she asked.
“You told me the truth and I didn’t like it! Many times I would ask you a question, and when I didn’t like your answer, I would walk away muttering, ‘She don’t know everything.’”
She laughed and jumped off her chair and hugged me.
And from that day forward, she became my most favorite doctor ever.