UNTIL DEATH DO US PART

Will you love and honor each other as man and wife for the rest of your lives? –

Catholic Rite of Marriage

True to his word Neal and I prayed together every morning from that moment forward. Some mornings I rushed to get in the shower but I knew he was about to leave for work so in all the glory God gave me I’d sit with Neal on the bed, hold his hand and pray. When his timing became every morning that I tried to get a shower in before handling the kids, I realized he got a kick out of this naked prayer.

Despite how I might have been dressed, prayer was awkward. Neal wasn't used to praying aloud and I wasn't used to the intimacy prayer offered.

“Lord please watch over the boys and Shannon as they go about their day. Bless Shannon in the work you are calling her to do at the parish. And thank you for giving me the means to provide for my family.”

Neal would squeeze my hand when he was done. I kept my eyes closed, afraid if I looked at him he’d let go of my hand and the prayer would be over. “Heavenly Father I am grateful for our family and our marriage. Please keep us all healthy and safe from harm. Help me to follow your will in my life. All I want to do is reflect you and help others see their worth in you.”

I felt my face burn with embarrassment. “I am grateful for Neal and his job for how he supports our family. Please continue to bless our marriage. Through Jesus Christ we pray.” And together we’d make the sign of the cross.

Our prayer was uncomfortable in the beginning yet peaceful. We were meant to pray together. My most intimate prayers should be shared with my husband. To hear him pray aloud for me and for God to bless me in ministry or for whatever retreat or talk I had coming up was a gift I never knew would feel so good.

The kids amused us in prayer. The boys were young and though they were both used to praying with me at night and at school now that Daddy led the prayer and made it more of a family affair in the living room they took it more seriously.

Ryan would begin kneeling on his knees with his hands pressed together. "I pray for everything and everyone.” As soon as he said it he was up and bouncing from one end of the room to the next.

Seth mimicked Ryan. At times they surprised us and prayed for our dog, their babysitter or someone in their class.

With God first in both our lives we turned to Him together when times got rough. Or if one of us fell back into an old habit it helped to see the lapse for what it was and to learn from it.

I stayed true to my promise and focused on family first over ministry and gave up working as a full-time youth minister and went into part-time young adult ministry. Because Neal supported me I used my time wisely at home and it seemed more opportunities came my way to speak publicly.

Life fell into place for Neal and me on many levels. Ryan, the year before the fourth grade, was taken off his medications by recommendation of his teacher and pediatrician. For a year he successfully continued to make straight A’s and showed the personal restraint in some unacceptable social behaviors like screaming when he’d speak. Ryan wanted to do well as much as we wanted him to succeed and he showed us this with every passing year.

Opportunities opened up for Neal and because of his loyalty, dedication, and work ethic he was known in his industry for his abilities. We recognized the compromise of both of us needing time together, time alone, and time as a family. We respected one another and gave each other the time and space needed. The animosity and frustration we used have because one felt the other ‘got more' vanished.

When the opportunity came to go on a work trip to San Diego, California, we jumped at the opportunity to get away on our own. Celebrate us for the first time in a long time.

The trip was picture perfect with gorgeous blue skies during the day and a star-kissed sky at night. Neal played golf for 'business' while I shopped with the other men's wives and every evening we ate like celebrities. On the eve of our final day we received texts from home telling us there was a possibility of a hurricane headed in the direction of the Gulf of Mexico.

Our kids were safe with Neal's parents. Neal had installed a generator that ran on natural

gas in their home a few months before but that didn't help calm our nerves. We turned on the TV to the Weather Channel to hear the latest because California was only giving general updates on their local news channels.

I brushed my teeth and Neal watched the TV like a hawk waiting for the slightest bit of information. “The hurricane is headed directly toward Galveston with a path right over Houston and Kingwood. Hurricane IKE.”

“What? Are you sure? I thought it was headed more toward Corpus?”

Neal rubbed the back of his neck. “That’s what it showed. Damn.” He threw the remote onto the bed. “Do you know what that’ll do to Kingwood with all of the trees? The wind alone will knock out power and who knows what our houses will look like when we get back.”

“But we are so far out from Galveston. It’ll lose strength right?”

“That doesn’t matter. It depends on how strong the winds are. I’m not worried about the rain but those trees can fall and cut down power lines, cause fires, and destroy the houses.”

Our entire group on the trip was from the same area, but we spent dinner doing our best to make the most of it.

“Maybe the storm will fade in the sea before making landfall.”

“There’s nothing we can do about it except pray.”

It was the shortest dinner we’d had on the trip. No one was in the mood to carry on and enjoy any part of the evening. All we could do was wait and pray.

Neal paced the hotel room. I watched him rub his neck and back. “You okay?”

“Yeah, it’s just stress.” He sat down in the desk chair.

“Do you want to pray with me?”

He had his hands clasped at his mouth. He nodded.

I patted the bed next to me. “Come to bed and we’ll pray. You don’t need to stay up all night.”

He got up to join me. “I know Mom and Dad said they boys are sleeping but I can’t help but want to be there with them.”

“I know but there’s nothing we can do.”

We bent our heads in prayer and held onto each other. Neal nudged me. I knew he couldn’t speak. “Lord, please watch over Ryan and Seth and Neal’s mom and dad. Please keep them safe. We pray the storm will lose its strength and cause little or no damage. Help us to get home to our babies. And I pray for everyone with us that all of our homes are safe from the storm. We ask this in your name, amen.”

The following morning with only a few hours of restless sleep we woke to hear the Weather Channel tell us about the obliteration Hurricane IKE caused on Galveston Island and Crystal Beach. We couldn’t get a text to go through to Neal's parents and were informed by the news that power was out in thousands of homes in Kingwood all the way to Conroe, Texas an hour north of Kingwood. Airports were shut down. We couldn’t get home.

Neal got on the phone and tried to reach anyone he could through his company to find out any information. After a few hours we managed to get through to his parents and found out they were all okay. The generator worked so they had power in 75% of the house, including all appliances and A/C units.

Neal’s dad sounded amazed. “Your boys slept through it all. I can’t believe it. Trees were falling all around us and wind shook the windowpanes. It sounded like we were in a war zone.”

“I’m going to do whatever I can to figure out a way for Shannon and I to get home. We might have to fly into Dallas but I’m not staying here.” Neal worked with the others in finding another route home. Occasionally I saw him rub his neck, arm, and leg. It was obvious as the stress took its toll.

“Power is going to be out for at least a week if not more in Kingwood.” Neal rubbed his neck. “I think I found a flight into Dallas and I’ve talked to Dad. He and mom are going to drive the boys up to Dallas and meet us at the airport. Your dad is going to meet us in Dallas and take you and the boys back home to stay with him.”

“What? Why?”

“Because from what Dad says it’s crazy in Kingwood. There’s no electricity. It’s hot, Shannon. Besides food will go bad fast.”

“If there are so many trees down how are your parents driving out of Kingwood?”

“Dad said he saw a truck paving a way from their neighborhood to the highway. He’s fine if he can get to the highway.”

It was a blessing that his parents lived in the front of Kingwood near the highway. “What are you going to do?”

“I’m driving back with my parents. I need to see what damage has been done to our house and work’s already called. We need to get generators into the customers.”

I hated being without Neal at my parents but I knew he was right. Being with two small boys and no electricity didn’t sound fun.

Neal called the morning after he’d arrived home. “You should see this place. It’s eerie. No lights are on and massive tree trunks are laying all over the roads. You can’t drive at night because there’s no clear path.”

“But no damaged to our house?”

“No none. The trees that could’ve fallen on the house are either still standing or went in the opposite direction. But you should see some of the houses from the main road. There definitely is damage.”

“What’s that loud noise? I can barely hear you.”

“That’s the generator. Can you believe our neighbor told me to cut it off last night? He’s nuts.”

Two days after Neal arrived home, he called late at night. “I’m not feeling right. I think I’m going to take myself to the ER.”

“What? No one’s going with you? Are you okay to drive? What are you feeling?”It’s a heart attack I bet.

“Chill out. It’s nothing my right side feels funny. Not my left. It’s like it’s going numb.”

“Oh my gosh. Seriously? Neal! Then go. Go now.”

Five hours away from home at the northern tip of Texas I paced until I got word from Neal it wasn't a heart attack. They didn't find anything and sent him home.

Like a caged animal I went crazy not able to know what was going on with Neal and our home. I convinced Neal and my parents I was fine to drive the kids home. I took one of Dad's work cars and settled in for the long trip.

Driving in Kingwood was like driving into a war zone. Massive tree trunks riddled the roads like candy sprinkles on a cupcake. There was so much clean up and so much work to be done that even a week after the storm it still looked like the storm just hit.

With precision and care I maneuvered the car through the debris. I was shocked to find our driveway clear. Thank you Lord for getting us home safe.

That night Neal woke up in the middle of the night. “My shoulder is killing me and I can’t feel my right side.”

Oh no. “Okay let me call your dad. I’m going with you to the ER.”

We sat in the ER for three hours among crying babies and men and women of all ages who looked as tired as I knew we did.

“If they don’t see me in the next half hour I’m going home.” Neal held onto his shoulder, kneading his hand into the muscle.

“No you’re not.”

An hour later Neal was called back for some tests. A half hour later they brought us into the a triage room. “We are not finding anything out of the ordinary on your EKG and your blood tests are normal. Your blood pressure is in normal range. You are not having a heart attack.”

“What is it then?” If it wasn’t a heart attack then they needed to have some answer.

“It’s been a stressful time for everyone.”

“Yeah, okay.” Neal got up in a rush. “I get it. This is from stress, right?”

The doctor put up his hands.

“Whatever.” Neal pushed past me and out of the room.

“Thank you.” I left and followed Neal.

A few nights later Neal stumbled and fell into the wall. I could tell his gait was a bit off, almost like he was tipsy. He hadn’t been drinking. He’s just tired and stressed.

“Shannon.”

I woke to Neal shaking me.

“Something’s wrong. I don’t care what that doctor said. This is not stress. I’m going to the minor emergency.”

“You don’t want me to go with you?”

“No. I’ll be fine. I’ll call you.” He kissed me on the cheek and left.

Third time wasn't the charm. His blood pressure was high enough that the minor ER sent him to the hospital in an ambulance. Again, nothing showed up on his EKG and even though Neal insisted he felt numb and couldn't walk well they didn't suggest any other tests.

The next morning I wouldn’t let Neal leave the house. "Go to a regular doctor. Get them to take x-rays or an MRI because this isn't like you to go to the emergency room three times in a row."

Neal called and got in with his general doctor who took an x-ray of his neck where he saw a slight hole that caused alarm. Once again I headed to the hospital, this time with a packed bag and a pounding heart.

When I got to his room they prepared Neal for an MRI and spinal tap. Due to the symptoms of numbness on his right side and weakness on his left, combined with the apparent hole in his spine near the nape of his neck, they wanted to check out all possibilities.

Amidst the chaos of no power in the majority of homes in Kingwood our friends stepped in like family. They took care of our children, brought us food, and prayed with us.

I sat on the hospital bed with Neal and held his hand when the doctor came in to give the prognosis.

"We are pretty certain you have transverse myelitis which is an inflammation of the spine that could be causing the numbness on your right side. However, there are three lesions on your spine as well so I want to do an MRI of your brain. If it is the transverse myelitis it might go away within a month or two or take up to a year. The hole in your spine at the base of your neck is called syrinx. It isn't life threatening, and you have most likely had it all of your life. But I want to do the MRI of your entire brain so we can get a better idea of what is going on."

Before we could take in the information two men came in and wheeled Neal away again. This time when the doctor came back to deliver the results my in-laws were in the room with Neal. I arrived from dropping the boys off at school. I stood at the door thankful to see I hadn't missed the doctor's visit.

"We need to do a few more conclusive tests with the spinal tap fluid we took yesterday but from the MRIs we see you have lesions on the brain and the three on the spine. It isn't definitive until we get the final results but it looks to be multiple sclerosis."

Multiple sclerosis?

The doctor did his best to explain but at the time it didn’t sink in. They gave Neal IV steroids for five days in the hospital. During this time we researched more about multiple sclerosis online which didn't help our outlook.

Multiple sclerosis is when the myelin sheath that covers the nerves in the brain and the spine deteriorates and causes a 'tear' or 'lesion' essentially making that nerve useless. The threat of MS is when the nerves are exposed or become useless and whatever area within the body the nerves control is affected. The area of the brain that gave Neal feeling on his right side was affected which caused him to be numb from his chest down to his foot.

I lay beside Neal in the hospital bed and listened to him explain what he felt.

"It's like when your leg goes to sleep and you try to walk on it. You can't feel it but you feel pressure if touched.”

I ran my fingernails lightly along his thigh. “Can you fell this?”

“No. I know you’re doing it because I see you. I can only feel the pressure.”

I moved my hand and buried my face into his chest so he couldn’t see me cry.

Desperate to battle the disease, regardless of its history of having no known cure, we sought out the best. We managed to get an appointment with the a renown MS doctor in Houston at UTMB, who happened to also be the country singer Clay Walker's MS doctor.

Neal and I stood in the elevator in silence. The doors opened into a waiting room filled with debilitated men and women and their caregivers. Some with walkers leaned against their seats, others had walkers in their hands, and a few were in wheelchairs. Neal grabbed my hand as we took a seat. It wasn't a sight we expected and it forced us to face his impending future head on.

In many ways it reminded me of the moment I walked into the rheumatoid arthritis doctor’s office and saw all of the artificial joints on display. I was officially in remission now but couldn’t help picture Neal and I sitting side by side on our motorized scooters. I smiled at the thought. Humor is how I dealt with the uncomfortable and it didn’t hurt to imagine Neal and I drag-racing down a hallway on our pimped out scooters.

By the time we were called back into the doctor's office the lump in my throat was so wide I felt like I couldn’t get any air. I was determined to be strong for Neal and not cry. He looked like he was in shock. I couldn’t break down.

The doctor was eccentric, never quite looking at either one of us in the eye. He talked fast and seemed a bit enthusiastic when he learned Neal had the 'Dawson's Fingers' (more than nine lesions on his brain), three lesions on his spine and syrinx (the hole in his spine near the neck). After a twenty minute session that felt as if Neal was on an interview the doctor broke down his options.

“You have relapsing-remitting multiple sclerosis. The fact that you have the Dawson’s Fingers tells me you’ve had MS for awhile without major symptoms.”

I couldn’t keep quiet. “Why did it show up now?”

“Usually stress is the catalyst to a flare up.”

Neal and I looked at each other.

“You can take either an interferon based protein like Betaseron it comes in a pill form but is harsher on your stomach and liver. Or a glatiramer acetate base protein like Copaxon which is a daily injection. Both work well to keep you from flaring up but there is no guarantee for the long term. Each person with MS is different. You can go without another flare up for ten or twenty years and then immediately go into the secondary-progressive or progressive-relapsing phase. Or you can continue to flare up despite the medication and enter into the progressive phase within a few years.”

Neal and I stared at him and blinked. It was like we heard him play the ‘Would You Rather’ game. Would you rather take a daily injection and eventually you’ll be crippled. Or would you rather take a pill and be crippled. Either way both options sucked.

“There is no cure but we are working diligently to figure out the progression of this disease. Because you haven’t entered into the secondary-progressive phase you are a prime candidate for our research study.”

Neal's eyes caught mine and he rubbed his eyebrow, a tell-tale sign he was nervous. The doctor left the room. "I'm not doing the study. I'm not taking the chance of being the one who gets a placebo and then ends up in his waiting room with a cane next year. Dr. Nguyen gave us the same treatment options. I’d rather just stick with him."

The doctor came back in the room. “Here is some information on both types of medication. And here is packet giving you more details on the research study.”

We were out of the office building in minutes. “You drive.” Neal handed me the keys, which was another sign of his stress level.

Neal didn't like my driving. I knew he needed his moment. God please give Neal the strength he needs right now. It'd been two weeks since he'd been in the hospital and only a few days since he received the spinal tap confirmation of the disease. There were moments Neal would sit and stare into space and rub his eyebrows. I’d make sure the boys, who were now old enough to understand Dad needed time to think, were quiet and out of his way. I waited for the moment he’d explode in anger.

Neal sat silent in the passenger seat. "This sucks."

I expected a few other choice words to express his pent-up emotions. I expected him to go into a rant and feel sorry for himself and complain about what he stood to lose because of this disease.

"You know, it is what it is.” The pain, thought absent in his speech, was evident in his eyes. “There is nothing I can do except take the medication the doctor suggests and continue to live life."

I was in awe.

Before choosing his medication Neal took advantage of speaking to other MS patients and discussed his fears and concerns. He talked about it and I listened. I waited for him to have a meltdown, to get angry and upset but he remained calm. Stressed, but calm.

For the next few months he suffered through two more flare-ups that put him back on steroids. Steroid treatment is the hardest part of having MS because the steroid is the only drug that can stop the damage of the flare-up (when a lesion is considered 'active' and damages the nerve, therefore debilitating the area of the nerve) however the steroid altered his mood.

In the beginning there were moments I felt I'd lost Neal completely. On the steroid he wasn't the calm, rational man I loved. Instead he was volatile and on edge.

“Get out of my f’n face!” The look in Neal’s eyes was evil. There was no trace of the calm and collected man.

I wanted to react and respond with my own anger and it took every ounce of control to not slap him. I knew it was the medication because he wasn't making sense and he wasn't himself. I took Ryan to Seth's baseball game. I sat alone at the top of the bleachers while Ryan played in the park and Seth was on the field. I allowed the tears to flow. "How am I going to get through the rest of our life with him like this?" I realized how often Neal might have prayed the very same prayer in regards to dealing with the many irrational blow-ups I had early in our marriage. Not because of steroids but because of pent-up hostility and anger left as residual effects of the abuse.

Worse, family prayer became urgent pleas from the boys. "Help Dad get better and make him happy again."

Neal winced as if he were stuck within this body, unable to be free.

One day I found Neal sitting on the edge of the bed with his head in his hands crying. "I don't mean to be this way. I'm filled with this rage and anger and I'm on edge and I don't know how to stop it."

Thankfully the steroids were only a two-week ordeal. I went with Neal to his follow-up neurology visit. “I think the next time he has a flare up we need to put him in the hospital. He rages and I’m afraid he’ll hurt one of us.”

Neal reached over and squeezed my hand.

“I hate to say it and I’m not exaggerating. That or he needs to live with his parents while he’s on the steroids.”

The doctor’s eyebrows peaked. “I have a better idea. When I put him on the pill form of the steroids they have to give it to him in higher dosage to enter into his system. But if we do an IV steroid it is more mild but with the same results. A nurse can come to the house and put in an IV port and show you how to administer the medicine yourself.”

Six months later Neal had another flare-up, the third in his first year of diagnosis. This time a nurse came and put in an IV port. We all knew what to expect and the boys and I gave Neal his space. Neal, too, was able to tell when the medication began to make him irritable so he warned me. "It's starting so if I say anything know I don't mean it."

Living on edge is not living but thankfully the daily IV medication took effect, slowed down the progression, and kept him tolerable. Taking advantage of the time we had I did fewer retreats to free up more weekends to travel with him.

Our perspective on marriage and life in general changed drastically. The little things didn't matter anymore, not when he was faced with a disease that was incurable with the possibility of becoming blind, deaf, and physically handicapped, even to the point of losing the ability to swallow. Not one case we heard about multiple sclerosis was the same. It was a crap shoot. Neal could spiral down the rabbit hole and progressively get worse within five years or he could manage to go as far as twenty to thirty years without experiencing even one of the side effects.

He could die in a tragic accident before dying from MS but the realization of higher possibility of an impending doom forced us both to appreciate life day by day.

Carpe Diem.

Living this way not only opened our eyes to the full beauty of what God had blessed us with in family and friends, but in the friendship we had with one another. I wanted to make sure we had moments and memories. One of the first trips Neal wanted to go on was to Rome. I planned a trip through the parish with our priest. Neal had never been overseas and he wanted to see the Vatican and feast his eyes upon the history and all Italy had to offer.

We were blessed to have our priest with us and celebrate Mass in many of the famous churches in Rome, including at St. Peter's down below in the crypt of the Vatican around the corner from Blessed Pope John Paul II's tomb. The most memorable was when we went to St. Clements the site of the very first church where the first Christians met in homes to celebrate the Sacrament of the Eucharist. Over hundreds of years they built another church on top of the original home and then on top of that church they built St. Clements. It was here our priest offered to do a renewal of marriage vows for all married couples on the trip.

Neal and I locked hands and looked at one another, dressed in jeans and sweaters, no fancy dress or professional hair and makeup. Just us. Simple. My heart pounded as I looked into my husband's eyes and I realized how much I wanted to say those vows again, this time paying attention to every word I committed to him without doubt or fear.

"I, Shannon, take you, Neal , for my lawful husband, to have and to hold, from this day forward, for better, for worse, for richer, for poorer, in sickness and in health," my voice caught and realized I didn't have to vow it, I lived it and I meant it. "Until death do us part."

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