Ball Juggling

Psalm 34:15 & 17
“The eyes of the Lord are on the righteous and His ears are attentive to their cry. The righteous cry out and the Lord hears them; He delivers them from all their troubles.”

It was a Thursday, and TJ and I had had a busy day of therapy in the morning and school in the afternoon. Because TJ started his senior year second semester, the school didn’t have a nurse employed for him, so they asked me to be his nurse. I was thrilled TJ was going back to school to finish his senior year and would be around young people again, so I eagerly accepted. Even though it meant that I was extremely busy running him from one thing to the next, I didn’t mind. It was better than him sitting alone in front of the TV all day.

After writing poems and learning about America’s government, we returned home from school, and I parked him in his favorite La-Z-Boy chair so he could play Xbox. He loved his Xbox. He played it all the time, but with hands and arms that had a mind of their own, I don’t know that he ever really accomplished much. Most times when he was playing, I found him with his arms over his head, the controller upside down, and the character on the TV running around and around in circles. Even so, it didn’t seem to bother him, and he still kept trying.

After getting him settled in, it was late in the afternoon when I looked at the time. 3:30 pm. Aiden would be getting off the bus in a half an hour. Aiden is our grandson we adopted as a baby. He calls us Nana and Papa. He was in kindergarten at the time, and it was West Des Moines’ policy that kindergartners had to be picked up at the bus stop by an adult.

After attempting to do a little housework before picking Aiden up, I heard TJ’s call button sound. I strolled into his room to see what he needed and found that he had had an accident and was very upset. I lifted him up, walked him to the bathroom, and began cleaning the mess and doing laundry. I was so focused on my chores that I lost track of time until I heard the sound of my phone ringing. I halted what I was doing and looked at my phone. It was the West Des Moines School Bus. I quickly glanced at the clock and saw that it was 4:10 pm. I immediately knew why they were calling — I had forgotten to pick Aiden up from the bus. Panic set in, and I felt my stomach getting sick.

“Hello?” I answered.

“This is Lisa from the West Des Moines School Bus. There was no one to pick Aiden up from the bus stop today so the driver kept him on the bus. Are you home now?”

I could feel my stomach twisting and turning inside of me. All I could think of was Aiden sitting on the bus, scared with tears running down his cheeks because his nana had forgotten him.

During TJ’s initial hospitalization, while TJ and I were in Rochester and Papa was working nights, Aiden was shuffled around from house to house for months. He was too young to understand what was happening and sometimes begged his papa not to leave him.

During that time, my hope was that after we came home, things would get better for Aiden and we would achieve some type of normalcy. But things hadn’t gotten better. Caring for TJ still took up most of our time, and Aiden was left with the scraps.

We were failing. We were juggling more balls than we could handle, and some balls were dropping. I knew deep down that it wasn’t our fault, that it was out of our control and we were doing the best we could, but I still felt incredibly guilty and worried that Aiden was going to pay the price.

“Yes, I’m home. I’m sorry. My other son is disabled, and I was in the bathroom with him and couldn’t get to the bus stop. Is Aiden okay?”

“Yes, he’s fine. It’s no problem. The driver will keep him until the end of the route and then will drop him back off at his stop. I will let you know when he is on his way back.”

“Thank you so much. I will be there,” I said and hung up the phone.

I quickly went back to cleaning TJ up and began a conversation with the Lord expressing my frustration with our current situation.

“I don’t understand, Lord. Why would You give us this little boy when You knew TJ was going to get sick and we wouldn’t be able to handle all of this? This isn’t fair to Aiden. Please do something.”

But nothing changed. We were still juggling too many balls, and Aiden was still getting the scraps, but we kept pressing on, trusting in the Lord and His promises, and doing the best we could.

One day several months later, I noticed that Aiden was watching something on YouTube. Becoming concerned about what was entering his little mind, I asked him what he was watching.

“Bible stories,” he answered.

After studying what was on the screen, I noticed they weren’t just children’s Bible stories like Veggie Tales or cartoons. They were adult Bible stories, like the Ten Commandments.

“Hmmmmmm…..that’s a bit unusual,” I thought. “What kid wants to watch adult Bible stories?”

I was intrigued and somewhat skeptical, so I sat down with him to find out more.

During our conversation, I learned that he had been searching YouTube for Bible stories and had watched almost every one of them and was trying to find more. He clearly was fascinated by them. I was astounded and could hardly believe it. I thought back to when I was a kid and remembered how much I disliked those movies. I thought those movies were boring and that the people on them were strange and dressed and talked funny.

After telling a friend a few months later about his incredible love of Bible stories, she commended me on our great parenting, and I burst out laughing. I knew it had nothing to do with us. We had been so focused on taking care of TJ and searching for answers that would improve his life that we hadn’t been spending quality time with Aiden and teaching him God’s Word like we should have been. The honest truth was we were failing him. But God wasn’t. God was instilling a love for His Word in Aiden’s little heart, and without us even knowing, He was picking up the balls we were dropping.

Aiden is now 9 years old and entering fourth grade, and he gets more individual attention from Nana and Papa now than he sometimes wants. He still loves Bible stories, and one day after his amazing NBA career is over, he wants to be a pastor. This past year we enrolled him in a Christian school after TJ died, and at conferences this year, one of the first things out of Mrs. Stuart’s mouth was, “He is enamored with Bible stories!” At the time she knew nothing about his past or how much sharing that tidbit of information would encourage me. What a blessing that was to me.

What about you? Do you sometimes feel like you have too many balls in the air? Do you feel that you just can’t keep it all together and do everything well? During my time of ball juggling, I learned that God hears us and is always with us. He strengthens us and upholds us (Isaiah 41:10). He sets our feet on solid ground and steadies us as we walk along (Psalm 40:2). He makes a way when there seems to be no way. Although we may fail, He never does.

Whatever difficulty you are going through, you are never safer than when your trust is in the Lord. He loves you. He will hear you and will deliver you from all your troubles.

The Woman with the Box

Philippians 4:19
“And my God will meet all your needs according to His glorious riches in Christ Jesus.”

It was a hot summer morning in Rochester, Minnesota, and a wave of heat hit me as I exited the doors of the Ronald McDonald House. Summers here were milder and shorter than in Iowa, but needless to say, we still got the taste of a good heat wave for a couple of weeks in July. The hospital was always so cold, so I didn’t mind a little heat. After meandering through the parking lot to the sidewalk just beyond, with my head down, I started out on my morning walk to St. Mary’s Hospital. I began thinking about the coffee I would soon be purchasing at the Caribou across the street. Pleasing thoughts of mochas and lattes danced in my head, and I quickened my pace in eager anticipation of drinking one of them.

While walking, I looked up to see how far away from the hospital I was when I noticed a rather peculiar sight. There was a young woman a ways up ahead of me carrying a large box. Even though I was still quite a distance from her, I could see she was really struggling with it. It held my attention for a while because I wondered why she would be taking such a large box to the hospital. Unable to come up with a reasonable explanation, I went back to walking with my head down. The next time I looked up, I was surprised to see that she hadn’t arrived at the hospital doors yet. She apparently had given up on carrying the box and was now sitting on it beside the sidewalk.

“Hmmmmmmm,” I thought. “That’s not something you see every day.”

As I approached her, I soon realized she had stopped and was sitting on it because she was bawling her eyes out. Concerned, I stopped and asked, “Are you okay? Can I help you carry the box?”

She nodded. Together we picked the box up and started out again for the hospital, and she began opening up about what was troubling her. “I’m from North Dakota and my baby is having heart surgery. I have three other kids at home with my husband, and my husband is angry at me, so he only sent me half the money he was supposed to. I need to ship this box, and I don’t have enough money to ship it.”

My heart sank. This was such a hard place. Everywhere I looked there were sick children and grief-stricken parents. For most families financial difficulties loomed, and fear of the unknown outcome of their sick child hung over their heads like a black cloud. It was no wonder she and her husband were arguing. One very sick child was a state away with one parent, and three other young children were at home with the other. They had to be stressed to the max. As we walked, I listened and offered what encouragement I could.

After arriving at the hospital, we came to my elevators just inside the Francis Building. “These are my elevators,” I told her. “How much farther do you still need to go?”

“Not much farther. I can handle the rest by myself. Thank you for helping me,” she said.

I then stopped, set the box down, pulled out my wallet, and handed her $60.

“Oh, I can’t accept this,” she said.

“No, please take it,” I said. “It’s not my money anyway. People gave it to me.”

While TJ and I were at Mayo, I was amazed at the amount of money I received in the mail. I couldn’t believe how kind people were, and some of them were people I didn’t even know. A few weeks after TJ’s surgery, when we realized his medical problems were not going to be over any time soon, I quit my job to stay with him. Since we lost an entire income, my goal was to use the money I received in the mail to live on so I would not have to dip into our already tight finances back home. Up to this point in our stay in Rochester, I always had everything I needed.

So after again encouraging the woman to take the money, she finally relented and accepted it, and we went our separate ways. I pushed the up arrow for the elevator, and when the elevator doors opened, I was happy to see there was no one in there and I would be riding the elevator alone because I had some praying to do. As I rode to TJ’s floor, I prayed, “Lord, I gave that woman almost everything I have, but I know it’s what You wanted me to do. I’m low on money now, Lord, so You are going to have to help me.”

I then walked off the elevator and pushed my concerns about money aside because I trusted that God would take care of me. I really didn’t have time to worry about money anyway. I had to keep focused because there were more important things going on. TJ was having trouble with excruciating headaches as they weaned him off powerful medications.

Over the next few days, I tightened the purse strings. There were no more mochas or lattes from Caribou, and I ate simple meals that were prepared in the kitchenette in my room at the Ronald McDonald House. About three days after the box incident, during a short lunch break, I walked to the Ronald McDonald House to check the mail. I was excited to see that in my mail cubby was a card from a good friend named Carole. I always loved getting mail from home. After opening the envelope and reading the front of the card, I noticed there was a folded-up check inside. I unfolded the check, and to my surprise, saw that it was for $60, the exact same amount I gave the woman with the box. God had met the needs of the woman carrying the box as well as my own needs.

I learned a powerful lesson that week when I was in Rochester. I learned that if I hold on tight to everything I have because I’m afraid of where more will come from, then I really am not trusting that God will provide for my needs. But if I take a step of faith and believe that God will meet all my needs like He says He will, I learned that I will hold on to what I have loosely and will allow myself to be used as a conduit so that God can use me to get money to others who are in need as well. The Lord says in Matthew 6 that just as He feeds the birds of the air and clothes the grass of the field, He will also feed and clothe His children. All He requires of us is to trust Him and take Him at His Word. And if we do that, then we will be enormously blessed by watching how the great Hand of God moves into action and provides for His people.

He truly is a God who will meet all of our needs according to his glorious riches in Christ Jesus.

Airplane Melinda

1 Samuel 18:1
“…..the soul of Jonathan was knit to the soul of David, and Jonathan loved him as his own soul.”

It was a warm, Florida afternoon in November of 2005 when I received a phone call from Iowa and learned that my cousin Brandon had been killed in a car accident at the age of 27. Upon hearing the news, I crouched down on the floor of my Aunt Marcy’s living room and wept. He was the first one to die in our large family of cousins on my mother’s side, and he died way too young. Fond memories of the ornery but loving young boy running around my grandparents’ farm shooting us with toy guns and the handsome young man he grew up to be singing karaoke to the song Love Shack at our summer picnics by the pond flooded my mind. Nothing was ever going to be the same again.

At the time of Brandon’s death, we had been living in Florida for a few years, and I was terribly homesick. I hadn’t been back home since we moved, and I missed everything about Iowa. I missed my family and friends. I missed spring and the excitement of watching the flowers push up through the ground while the robins hopped around the yard and gathered material to build their nests and lay their eggs. I missed the Iowa State Fair in late summer with its farm animals, talent shows, and, of course, deep fat fried foods served on a stick. I missed watching the corn grow in the cornfields all summer long and then marveling at the beautiful colors when it turned bright gold in the fall. I missed walking through the woods without worrying about getting bit by a rattlesnake. I missed breathing in the cold air during the winter nights and the smell of smoke coming from the chimneys. Even though it was a tragedy that initiated my return, I was thrilled to be going home. Living by the beach in beautiful Naples was lovely and was a time in my life I would always treasure, but what living there had taught me was that I was a northern girl and my heart belonged to the Midwest with its rolling hills and friendly people.

Upon learning of Brandon’s death, my husband quickly bought an airplane ticket for me, and I boarded a plane headed for Des Moines the very next day. As I shimmied down the tight aisles with my carry-on suitcase in hand, I found my seat and realized that I was unfortunately in the middle. “Oh, well, you can’t have it all,” I thought. “At least I am going home.” I quickly stowed my luggage away in the overhead bin and sat down.

I noticed in the window seat next to me, was an attractive woman about my age with dark hair and brown eyes. I looked at her for a few seconds with the intention of saying hi, but she seemed to be engrossed in a book. Her eyes never left the page, so I decided to leave her alone. I quickly pulled out my book God’s Story by Anne Graham Lotz and began reading as well.

Almost immediately, I felt the Holy Spirit prompting me to strike up a conversation with her and tell her about Christ…….and I didn’t want to. I wasn’t very good at witnessing to others. It was uncomfortable, and I felt like I never made any sense and stumbled over my words. I ignored the nudging and continued reading my book……….but the nudging persisted. Still trying to find excuses to ignore the Holy Spirit, I noticed the book she was reading was a Christian book, so again I talked myself out of it and told myself, “She’s probably already a Christian anyway, so there’s no need to talk to her.” But the nudging continued on and on.

When we were getting close to Atlanta, tired of trying to fight off the Holy Spirit’s coaxing, I finally summed up the courage to say something. Upon hearing the captain’s voice that it was clear skies in Atlanta, I glanced out the window expecting to see beautiful blue skies but instead saw big puffy white clouds. I said to her, “Well, that’s sure a lot of clouds for clear skies.” She perked up right away and agreed, and we began visiting.

I learned her name was Melinda, and she lived not too far north of where I lived in Naples. She was a teacher at a Christian school and was headed home to Iowa as well for a funeral. I learned that she had grown up in Iowa like me and moved to Florida later in life. I was surprised to learn that we had attended the same church and knew some of the same people. She also shared that for a time she lived in Washington, Iowa while growing up. My husband had family there and she knew them as well. I was astonished at all of our commonalities. I looked around the plane, and thought, “Out of all the people on this plane that I could have been sitting by, and I just happened to be sitting by her, someone I have so much in common with.” There was an immediate bond between us. I then said to her, “God put us together.” And she agreed.

We visited the rest of the plane ride to Iowa, and by the time we got off the plane in
Des Moines, it was like we were old friends. As we rode the escalator down to baggage claim, Melinda’s sister was standing at the bottom waiting to greet her. As she watched Melinda and I make our way toward her, visiting and laughing all the way, a confused look spread across her face, a look that said, “Who is this woman, and how on earth could you have possibly known anyone on that plane?” Melinda then introduced me and we exchanged hellos. Before going our separate ways, we compared plane trips home. We both were disappointed to learn we were returning to Florida on the same day but at different times and on different planes, so we exchanged phone numbers, hugged, said goodbye, and promised each other we would stay in touch. I then set out to find my mother who was picking me up.

Uncle Ed (Brandon’s father) riding the cow made by
Great Grandpa Dougherty

During my visit, I stayed in the country at my Aunt Frankie’s house. She and her husband Barney live a very simple lifestyle, and nothing had changed much since I had been gone. The hand-painted cows made from gas tanks and antique cream cans my Great Grandpa Dougherty fashioned together still stood in the front yard, the wall of mirrors that greeted you when you first walked through the door into the living room hadn’t changed, and the fish tank by the front door still remained. It was comforting to be back in my old country environment.

The funeral was at a small country church on a gravel road and was officiated by a pastor who had been associated with our family for many years. The church was so full that the sanctuary couldn’t hold everyone, and some people had to stay in the basement during the service. I watched in sadness as Brandon’s mom struggled to walk down the aisle and take her seat at the front of the church. She understandably was unable to contain her grief and wept loudly. Burying a young person is not the natural order of life and leaves a person with many unanswered questions.

After the funeral service, we pulled into the country cemetery for the graveside service and parked right behind a big pickup truck. It was snowing heavily, and the snowflakes were unusually big and beautiful. I hadn’t seen snow in a few years and was excited that during this return trip home, God blessed me with snow. As we were undoing our seat belts, I watched as a cute, small-framed woman jumped down out of the truck in front of us bundled up in a Carhartt coat. A smile broke out across my face. Yes, I was definitely back in Iowa. You would never see a wealthy Naples woman in a Carhartt coat.

The visit went too fast, and early the next day, my mom dropped me off at the airport for my return flight home. As I was checking in, I learned that the plane I was booked on had mechanical difficulty and I was being moved to another plane which left later that morning. I then had quite a bit of time to kill, so I purchased a coffee, yogurt, and magazine and proceeded to my gate to wait. As I was reading my magazine, I happened to look up and saw Melinda walking toward me with a big smile on her face. I had been moved to her plane. We rode all the way back to Florida together. When we arrived at Ft Myers airport, both of our families were waiting for us, and everyone met each other. And we have been friends ever since.

Meeting for dinner in Ft Myers, FL spring break 2019
(left to right) Aiden, Travis, Kelly, Micah, Melinda, Mike

During that airplane flight to Iowa, I thought God was nudging me to share about Christ with the woman seated next to me. Sometimes my simple mind thinks that God just wants me working, working, working for Him. But that wasn’t God’s intention at all. God was nudging me because He just simply wanted me to have a friend, and if I hadn’t obeyed that day, I would have missed out on an incredible, lifelong friendship with a woman who has brought so much blessing, encouragement, and wisdom into my life. The nudge from God that day reaffirmed to me that it is always wisest to obey the Lord, especially when it is something you really don’t want to do because you never know what the Lord has planned.

Melinda and I have now been friends for 14 years. Our friendship has weathered moves that separated us by hundreds of miles, parenting challenges, chronically ill children, busy lives, and both of us losing our contacts in our phones at the same time which rendered us unable to contact each other for months. The friendship we share may seem kind of strange to people and some may wonder how two strangers who meet on a plane can have an immediate bond like this. But the answer is simple. It’s Jesus. Because of our common bond in Jesus and our mutual love for Him, He is the thread that knits our souls together.

A Birthday Celebration Disaster

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.

All Things New

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.

Morning Cup of Sunshine

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.

Weaving a Beautiful Story

Genesis 4:12
“Now go; I will help you speak and will teach you what to say.”

Have you ever felt insecure or inadequate about performing a job God has given you to do? I sure have! Have you ever made a mistake that you wanted to hide or maybe felt like a failure and wondered if you would ever be able to get anything right? I’ve done that plenty of times too. I recently learned, though, that despite all of our sometimes botched efforts and poor choices, God does His best work with imperfect, mistake-prone people. I would like to share with you a recent revelation I had regarding this truth.

A few weeks before Mother’s Day my friend who is also our Special Needs Coordinator at church texted me and asked me to speak at a Moms’ Day Breakfast for our Special Needs Ministry. I’ve had dreams of being a speaker since I was young and have wondered for over 20 years if those dreams would ever come true. Without hesitation, I excitedly said, “Yes!” and knew immediately what I would speak about. I had been preparing to write a blog titled “The Deep Water” that I posted a couple of weeks ago from the story in Matthew 14 where Jesus walks on water to the disciples who are in the middle of the Sea of Galilee. Much like special needs moms, the disciples were alone and afraid……until Jesus miraculously came to them walking on the water. I sensed that the timing of my upcoming blog post and my friend’s text asking me to speak was being orchestrated by the Holy Spirit, so I decided I would just expand the blog post a little more and make it into a half-hour talk for the breakfast.

As I set out to write, because I’d had the material in my head for years, the ideas came quickly, and I had it written in a day. I then asked my friend Melissa if she would mind looking it over for me. Melissa has been a speaker and author for many years. She is wise, seasoned, and I value her opinions. She said, “Of course.” I told her my talk was on the passage from Matthew 14 and that I was going to read the passage at the beginning of the talk and then basically break it down verse by verse. I then asked her when she talks, if she reads entire passages and then talks about the passage verse by verse. She replied, “No, I usually don’t do it that way. Oftentimes when speaking about a topic, I use Bible passages from all over the Bible.” “Hmmmmmmm,” I thought. “I may not be doing this right.” So I then asked another speaker friend of mine, Jennifer, how she does it. She also said she doesn’t do it that way and does it much like Melissa does.

Well, needless to say, that sent me into a tailspin. My mind froze, and I thought, “I don’t know how to come up with 30 minutes of material and talk about something and just throw verses in.” Thoughts then began racing through my mind like: “I can’t do this. I’m not qualified to be doing this. I don’t know what I’m doing. Pastors do this. They read scripture and then dissect it and teach. Who do I think I am? I haven’t gone to seminary. I’m going to make a fool out of myself!”

So I apprehensively sent my talk to Melissa, and she relayed back that she would read it and get back to me in a couple of days. Well, a couple of days came and went, and I began to climb the walls. My thoughts grew more anxious as I waited, and I checked my email multiple times a day looking for her response. It took all the self-control I could muster not to email her with the hope of nudging her along, but eventually I resolved that Melissa was doing me a favor, so I needed to be patient and not push her.

I then received a text from her stating that she had had a migraine for days and would be getting to it shortly. So I waited a couple more days with my anxiety increasingly growing, and then finally the much anticipated email came. I braced myself as I opened it. It read: “So powerful, Kelly! Very Holy Spirit led! There really isn’t much I would change.” Oh my goodness! I was relieved, and all my anxiety melted away. Her encouraging words were exactly what I needed to hear to keep going and stand up and speak with confidence.

But after receiving the positive feedback, I also began to think about what was going on inside of me and why I was so insecure and anxious about my preparation. God brought the story of Moses and the burning bush to mind.

In Exodus starting in the third chapter, the Lord called to Moses from the midst of a burning bush and told him He was going to send him to Pharaoh that he may bring the children of Israel out of Egypt because He had seen their oppression. Moses was insecure about his speaking abilities and didn’t feel qualified. The Lord then said to him in Exodus 4:11-12, “Who gave human beings their mouths? Who makes them deaf or mute? Who gives them sight or makes them blind? Is it not I, the Lord. Now go; I will help you speak and will teach you what to say.”

I then thought about my method for planning a talk. I have a natural bent to want to read a passage of scripture and then dissect it apart verse by verse, and this bent seems to be a little unusual for someone who hasn’t had any formal training. “Why do I always want to do that and where did that come from?” I thought. It didn’t take long before God reminded me of a Bible study I have been in since I was in my mid 20s.

Travis and I, when we were young and newly married, were invited to be in a Bible study with some people from our church. We have attended that study off and on now for over 20 years. All of the people who attend are older than us, and they are very wise and knowledgeable about the Bible. Most times during the study and especially when I was young, I just stayed quiet because I didn’t feel like I had much to offer, but all the while I sat there quietly under their teaching, I was drinking in their wisdom and knowledge and learning how to study the Bible.

When they first began studying together, they started in Genesis 1. They met every other week and slowly made their way through the Bible chapter by chapter. At the beginning of each night of study, they started by reading the chapter and then dissecting it apart verse by verse. After thinking about these things, it didn’t take long for me to realize that’s where I learned to read scripture and study it verse by verse. That’s what I’ve been doing for over 20 years, and that is what God has been teaching me. It is my default button and what feels most comfortable to me.

Memories also came to mind of when I was a middle schooler. The summer before my seventh grade year, I developed an eating disorder that I struggled with for years. It was so out of control that during my senior year of high school, I went to treatment to help me learn to manage it better. Day after day while in treatment, I was taught to stop and think about how I was feeling and then to write and express those feelings in a journal. Even though that wasn’t one of the more pleasant times of my life and oftentimes was something I wanted to hide and cover up, God still worked it for my good and used it to teach me how to express my thoughts and feelings.

I also remembered court reporting school. During court reporting school, I developed a love for the English language that I never knew I had. I was enamored with words, punctuation, spelling, vocabulary, and sentence structure. But upon graduating, I only worked as a court reporter for a year, and for many years I felt like I had failed and was embarrassed because my schooling seemed like a waste, but all the while, without me knowing, God had plans to use it later in my life for my good and His glory.

All of this Bible teaching from my past along with my successes, embarrassments and failures, God is now using to tell TJ’s story and to help others and point them to Christ.

And this is the way that God works in every one of our lives if we surrender and bring our past to Him. Sometimes God is teaching us in ways we won’t understand until later because we can’t see the bigger picture. And even though we’ve made what may seem like life-changing mistakes, our mistakes are not too big for God. We are never too far outside of His reach that He can’t turn us around and make our paths straight, and we can never mess up so badly that He can’t redeem us and use us for His purpose.

Because you see, dear one, God, in his great love for us, takes our accomplishments and the messy areas of our lives and weaves them together to create a beautiful story, and it’s not just any old story. It’s His story….the story He’s writing about us.

Consider the Poor

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.

Tom helping TJ out of his wheelchair to
dance at Night to Shine

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.

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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.

I Can’t Do Any More

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.

TJ and I at his 20th birthday party at Principal Park

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 Constant Friend

“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.

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