Where to Find Support

Support gearsWhen Mark was in a coma twenty-six years ago, the hospital provided a class once a week to discuss the effects of traumatic brain injury. Hating the position I was in and the information I now needed, I continued to drag my overwhelmed self into class every week. I wasn’t ready for the information, but I continued to go to the class and read the material they provided because I knew I had to know what might be ahead of us. I felt like I was just going through the motions, but it helped prepare me. Being with others who were in a comparable frightened state brought solace. Through our similar feelings and circumstances, empathy was found.

Months later at the rehab center there was a monthly support group, which Mark and I attended together. I felt comfort associating with others who were experiencing like situations. There is consolation when you realize you’re not isolated from society.

In the past, I hadn’t heard of a support group especially for caregivers, nor did I feel I had the time to participate in one. I knew there was a need, but finding the time is difficult if not impossible for some caregivers. That’s why I started Uniting Caregivers, which includes stories, tips and thoughts for online support.

My good friend, Laura Nordfelt, had a different vision. She saw the need to actually meet and strengthen each other by sharing experiences. She started Caring for the Caregiver shortly after I started Uniting Caregivers in October 2013. They meet monthly at Intermountain Medical Center in Murray, Utah and she’s done a marvelous job picking topics for caregivers. Laura asked me several times during the past three years to join forces since we are both passionate about supporting caregivers. I’ve given a few presentations to the group, but really didn’t know how I could add another item on my overloaded plate, even though it looked delicious and tempting to so.

This group meets at the same time the survivors do so I didn’t have to worry about Mark while I was at another meeting. I also belong to two writing groups; I enjoy the encouragement and information shared amongst authors. Support groups enhance my life and meeting face-to-face deepens relationships.

I decided it was time to juggle my schedule and join forces with Laura last November. I’m excited about the New Year and the presenters we have lined up and will share more of that information in upcoming newsletters.

Support-Stronger TogetherI still realize how hard it is for some caregivers to make time for a support group meeting. Since my mission is to encourage and help others realize they are part of a special society, I’ve decided to write monthly newsletters. I’ll share information and notes from the support group meetings I attend and list others around the Salt Lake Valley. I will include this newsletter on Uniting Caregivers. If you’d like to follow the blog, enter your email address on the website and receive notifications of new posts by email.

If you prefer just a monthly newsletter, please email Barbara@UnitingCaregivers.com. Type “subscribe to newsletter” in the subject line and you will receive a monthly newsletter with upcoming events and information on support groups.

March 2017 Newsletter <<<Click for PDF

What has been your experience with support groups?

 

Hidden Blessings

Everyone can benefit from the encouragement of a promoter and believer in their abilities. I’m grateful for the activists in my life and therefore try to reciprocate by being supportive of others, especially Mark. Being his advocate is a responsibility I take seriously. I’ve witnessed the difference it makes not only in ours life, but in other’s lives as well. It boosts one’s drive to improve and changes their therapy and even the care they receive. Likewise, therapists and professional caregivers buoy up when they know there is a supporter on board. Being an advocate can feel heavy at times and weighs me down, but I see the blessing of improvement which comes from it.

Surgery or illness always brings more caregiving involvement due to the strength loss it brings and for Mark, another issue is his speech. Many people don’t take the time to understand him or they feel awkward when there is miscommunication. Some people are embarrassed to say they couldn’t grasp what he was saying. Mark realizes his speech is impaired and he is not upset by having to repeat himself. He’d rather do that than to be ignored or have someone not comprehend what he’s saying. With uncomfortable and pleading eyes others often look to me to interpret what he just said. Therefore, I feel the need to always be by his side to love, protect and encourage others to understand him. I see the blessing the blessing that comes from communication and when others get to know Mark’s fun personality.

I get lots of advice about what I should or should not do and I have to remind myself it’s generally coming because that person cares about our well-being. Some people think the level of dependency is unhealthy and wrong, while others praise the assistance. Ultimately, I’m just doing what I feel is best, which isn’t necessarily what I prefer to do. As most caregivers know, it isn’t about me. One of the blessings in all this is as I help Mark, my love for him grows and when I come to his aid with the right attitude, it becomes an honor to do so. Not all people can be caregivers, but I’m fortunate to have the health, strength and support which enables me to do so.

This year has brought some unusual difficulties in my caregiving journey. Starting with my large hernia, which was an easy fix with the obstacle being the six-week recovery time and finding someone dependable to care for Mark. Originally, I was in hopes to have my surgery right after Mark had his hip surgery. I thought it made perfect sense for me to recuperate while Mark was in the rehab center. Due to complications, Mark’s hip surgery was postponed and my recovery plan was ruined. Thank heaven for family and friends, especially a daughter who was willing and capable of moving in for the recovery time. It turned out to be a great blessing for all of us, bringing us closer together as we worked through those weeks.

After my recovery, Mark was approved and scheduled to have his surgery. Less than a week before the long-awaited date we were informed he would have to go a larger facility with an ICU due to the risk of complications. It became more frustrating when we were told the surgery date was now uncertain because they weren’t sure when they could fit the four-hour surgery on the bigger hospital’s schedule. Another hurdle was the surgeon wouldn’t start the surgery late in the afternoon. We anxiously waited until the day before surgery to get word whether Mark could be fit in or not. Fortunately the surgery was able to take place on the original scheduled date and having it done at the larger hospital proved to be a blessing. Mark needed one radiation treatment to hinder the excessive bone growth from recurring. This hospital has an oncology center so Mark didn’t have to go far the day after his surgery for the treatment.

I was disappointed when I learned Mark’s insurance plan wouldn’t allow him to go to the rehab center of our choice. I appealed to the insurance company and the doctor wrote a recommendation for an acute rehab center. There was no persuading the insurance company. Saddened by their decision, I searched for an alternative. I learned that not all rehab centers allow a family member to stay overnight with their loved one. I understood their concerns, but for our situation, I couldn’t abide by the rule. Although Rocky Mountain Care discourages overnight stays, they do allow it, so here we are. Another benefit of this place was that Mark had rehab here two years ago after three hospitalizations for blood clots. The admitting personnel and rehab coordinator were familiar with us. It has proven to be another blessing that we are here. We love the therapists. They work hard to help Mark gain improvement. We appreciate their knowledge and the equipment available. The in-house doctor, nurses and CNA’s are helpful. It may not have been my first choice, but I believe he is getting the best care possible.

isaiah-55-8-9Some days it feels like I’ve had more than my share of things not turning out the way I’ve planned, hoped for and worked diligently towards. However, when I look back on the end result, I realize it worked out for the best. I’m feeling fortunate as I recall these hidden blessings and realize there are many who support us. I’m grateful for each one of you and especially for our greatest advocator. He pleads for us and knows what is best.

Life Must Go On

With the tragedy of the car accident and Mark in a coma my life felt like it had stopped. One night Dad drove me to the grocery store to pick up some essential items. It was awkward to be amongst happy and carefree people who were walking up and down the aisles, chatting with another about what they needed to make delicious meals, or what they wanted as a treat. This common environment now seemed outlandish. Weren’t these people aware of the pain and trauma that was so prevalent at the hospital just a block away? I had become used to seeing individuals filled with worry and heartache; it seemed odd to be around healthy and happy people. I felt out of place.

I was grateful our children had school, homework, friends, and activities which kept them busy, yet it was difficult to support all their endeavors. Thankfully, I had family who helped. Near the last day of school there was a party for the children and parents which included dancing. I’ve always loved to dance, but now it took all the strength I could gather and to put a smile on my face a do a line dance with my child.

I bounced back and forth between a world full of tragedy, pain, illness and sorrow at the hospital to another full of pleasure, comfort, good health and happiness at home. I appreciated the reprieve from the hospital, yet it made me uncomfortable. It just didn’t feel right to be away from Mark.

My thirty-second birthday was six weeks after the accident. I wasn’t in the mood for celebrating, but it was a big day despite my feelings. At the hospital, Mark was lifted out of the floatation bed he was in due to a large blood clot in his right leg and strapped into a big white reclining wheelchair for the first time. His eyes were wide open with a terrified looked as they moved him from the bed. I thought he must be frightened by not having control over his body while being moved. He was upright for one hour three separate times that day, which felt like a giant step in the right direction. I even saw him move his fingers while he was sitting up, which brightened my day.

I came home to a kitchen decorated with balloons, cake and happy birthday signs made by the kids. After dinner and cake we were off to Christopher’s first Pinewood Derby Race. My dad had spent hours helping him make his car. I was grateful for the time he took to support and help make this race possible for Christopher. Two days before the accident Mark and I went to the Cub Scout meeting with Christopher where they passed out the pinewood box kit and talked about the race. Mark and Christopher were excited to work on the car together. While driving to Ogden that stormy tragic day, Mark told me all about the cars he’d made as a kid and how he looked forward to helping Christopher with his car. There was no doubt in my mind that Mark was as excited about this Pinewood Derby Race as our son was and the memory of our conversation hung over me like a dark cloud. I knew that if Mark was awake he’d be terribly disappointed he was missing out.

June 1991, Christopher & IExcitement filled the building as parents and children gathered for the big race. Despite the fact I was amongst family and friends, I felt as uncomfortable at the Pinewood Derby Race as I did at the grocery store or the school dance, but I knew life must go on and I didn’t want to deprive our kids of any happiness. I smiled and cheered for Christopher’s car as it zoomed down the track and beat every other car and finally took first place. I was thrilled for him, yet heart-broken for Mark. I watched Christopher get his trophy and we took smiling pictures, yet inside I was crying and I couldn’t help but wonder if Christopher was too. I was delighted that he won, yet grieving for his missing Dad. I felt torn between two different worlds causing opposites in emotions. It was a bitter sweet birthday with milestones happening in both the worlds I was living in. It was also the day I realized that no matter where I was life must go on.

Chris with Grandpa

Chris with Grandpa

Christopher’s winning smile

Christopher recieving 1st place

Receiving 1st place

 

Once again he wins the race.

 

 

 

 

 

 

All bragging set aside. The red car wins by a landslide.

All bragging set aside. The red car wins by a landslide.

 

 

 

 

 

 

 

 

 

 

 

1991 Pinewood Derby  1st place trophy

1991 Pinewood Derby
1st place trophy

My favorite part of the pinewood derby experience is the next time Christopher saw his dad after the race, he took his prize car and trophy to the hospital and gave them to him. The car and trophy stayed on the nightstand next to Mark’s bed during the many months of his next recovery stage at the rehab hospital. When Mark came home from the rehab hospital, I asked Christopher if he wanted to keep the car and trophy in his room now. He said, “No, I gave them to Dad.” To this day, nearly twenty-four years later, the car and trophy are still on the nightstand next to Mark’s bed. This token of love from a remarkable eight-year-old boy is still appreciated and the memory of it will be cherished forever.

 

Our Children’s First Visit

While holding Mark’s hand and telling him about Western Rehab I felt him lightly squeeze my hand. Shocked and elated at his first movement in over six weeks I asked, “Did you just squeeze my hand?” I felt him squeeze it again. I grabbed the first nurse I saw and told her the good news. Skeptically she came into the room, took Mark’s hand and asked him to squeeze it. He did not. She looked at me and said sympathetically, it must have been a reflex without purpose. I knew differently.

When Dr. Hinchey did his morning rounds he said, “There is no change in Mark’s prognosis. He is still one point from being brain-dead and that point comes from his eye movement.”

“How can you say that? He just squeezed my hand.”

“If he can’t do it on command, it’s a reflex without purpose.”

Thinking, I’ve got to get Mark out of this negative environment, I asked, “Now that Mark’s red and white cell counts are getting in the normal range, how soon can we move him to Western Rehab?”

“I don’t know. We need to finish the treatment for his liver infection,” Dr. Hinchey said.

“Our children are out of school now and it’s hard to be this far from home. They ask me daily when they get to see their dad. When will that be possible?”

“They can come, but they will have to wear a mask over their mouth and wash up thoroughly before they come in the room because any infection would be deadly for Mark.”

It had been a long six weeks for me, but for a young seven and eight-year old child, it seemed like forever since they’d seen their dad.  They were anxious, but I was worried how their young minds would interpret the sight of their dad with all the tubes and equipment which kept him alive. I talked to the social worker about how I could prepare our children for their first visit.

“I can take them on a tour of the hospital first,” he said. “This will get them familiar with the sights, sounds and smells of the hospital. I can also show and tell them about the equipment which is helping their dad right now.”

That night I told the kids they would get a tour of the hospital and be able to see their dad tomorrow. They were excited, even though they knew he was hurt and he wouldn’t be able to talk to them. I talked to them about his special bed and equipment, but nothing could really prepare them for what they’d never seen before.

I’m sure the tour of the hospital helped, but Christopher and Katie were stunned when they walked into the room where their dad lay unconscious. At the first sight of him they stopped in their tracks and with unbelieving, widened eyes looked at him. The surgical masks they were required to wear in his room hid their opened mouths. Afraid to get any closer, they stayed just inside the doorway, speechless.

Katie recalls in her article written on June 17, 2014, Dad Creating Beauty After Tragedy, “My excitement shattered when I walked into his room. The man I once saw smash his finger with a hammer without shedding a tear lay helplessly unconscious. Tubes connected his lifeless body to machines. He was dependent on technology and the care of others. It was my first time seeing him vulnerable. I was scared. I recognized his face, but how could he be my dad? My dad was strong enough to lift me onto his shoulders so I could see parades over large crowds. My dad did sit-ups every night with his toes tucked under the couch as I sat on it and counted his sit-ups aloud. My dad killed spiders for me and read bedtime stories to me. I didn’t want to go near the lifeless body in the hospital bed.”

June 1991, first picture after the accident with the kids.

July 1991, first picture with the kids after the accident.

With all my heart and soul I wanted to make this better for Christopher and Katie. I knew they needed to see him to understand how hurt he really was and why he wasn’t home, but I disparately wanted to protect them from the worry.They were so innocent and I knew they’d be disappointed.

It was a Friday and my turn to stay overnight at the hospital, so my mom took the kids to spend the night at her house. I was constantly torn between Mark and the kids. I wanted and needed to be with each one, but it was impossible. No matter who I was with I was worrying about the other. I could hardly bear that we weren’t together as a family and had sixty miles separating us.

The small Ronald McDonald house which was close by the hospital parking lot became my home away from home. It had two bedrooms, one bath and living room complete with a couch, and reclining chair. The kitchen had a fridge, stove, a few dishes and utensils. In the beginning, I was in the basement of this home, but there was a plumbing issue so I had to move upstairs with the Call family who were from Idaho. Donna and Wayne Call were a little older than my parent’s and they had six kids with their youngest being close to my age. Wayne had a heart attack and after surgery he didn’t regain consciousness and was transferred to McKay Dee Hospital. Donna and I became close, despite our age difference. She was always at the hospital and her kids took turns bringing her needed items and staying overnight with her. I was given one bedroom and the Call family had the other. Each bedroom had a double bed plus a bunk bed in it, but with my broken collarbone I was more comfortable sleeping in the reclining chair. Sometimes my parents stayed there with me and on weeknights my brothers were there. The Call’s also had several family members coming and going and once in awhile it was such a full house they used sleeping bags on the floor in the living room. We got to know each other well over a seven week period of time. The Call’s made me feel part of their family. They would come to Mark’s room late at night to get me and to make sure I made it to the McDonald home safely. They were kind and thoughtful. I appreciated their friendship and we had a lot in common with our loved ones in critical condition. I was grateful for the comfort of this home which became a safe haven from the upset of the hospital. Amongst the turmoil and worrying about Mark as well as missing my own home and family I received the blessing of new friends and resilient children who quickly overcame their fear of seeing their dad.

Experience is a Great Teacher

Assertive or Aggressive 2

While I appreciate the years of education a professional caregiver has, it’s still really hard for me to leave Mark at the hospital. I realize they can be an expert in their field working with people who have a wide variety of disabilities and illnesses. They may have the education and the skills of an excellent doctor, nurse or therapist, but that doesn’t make them an expert on the person they are treating. Even though I know this, it’s difficult to stay calm when they don’t know how to do something which seems obvious because it’s common to me such as transferring, bathing and the other daily tasks of caring for Mark.

The memory of three hospital admissions in 2013 for blood clots is still etched perfectly in my mind. They didn’t know how/or want to transfer him so he was bedridden for a few days. I watched him get weaker as they treated him like he could not move. I asked the doctor if the nurses and aids weren’t getting him out of bed because of the blood clots. He said no, in fact, lack of movement brings on blood clots. I asked him to please order Mark some therapy, which he did. To my surprise, the therapist wheeled in a bedside lift.

“I don’t use a lift to get him up,” I said.

“Well this one will not only help me get him up, but he can walk with this lift stabilizing him.”

I watched anxiously to see how this would work. The harness was complicated and appeared to be new to the therapist. Mark was in a weakened state and this method of getting up took little effort on his part. He wanted to help, but was confused by this foreign process. It took nearly thirty minutes to get him in an upright position, leaving little time for walking.

“He can walk with a walker,” I stated.

The therapist looked at me like I was crazy.

“I will bring it tomorrow and we’ll show you,” I said and the next day, I did just that.

With assistance from the therapist and me, Mark took steps the length of the hospital room. The therapist was impressed and amazed he could do it. I was shocked at how fast he had weakened because he usually walked better and much further.

It took the full month of August 2013 in a rehab center to build up his strength again. This hospital experience taught me I needed to let them know immediately Mark’s capabilities and I took the walker to the rehab center.

With the bitter taste of last year’s experience still fresh in my mind, I was worried about how this year’s hospital stay would go and decided I needed to be more assertive with the professional caregivers. Shortly after we entered his room and met the nurse and aide who’d be caring for him for the next two days, I asked, “Would you like me to show you how I transfer Mark into bed?”

“Sure,” they replied in unison.

Standing directly in front of him, I lifted his foot and I swung the leg rest to the side to move it out of the way. I followed the same routine with the other foot while Mark unfastened his seatbelt. With his feet on the ground and carefully positioned with the foot closest to the bed out in front of the other, I placed my feet in front of his to hold them in place. I wrapped my hands over his shoulders and tucked a few fingers under his arms. With my knees pushing against his legs, I pulled upward with my arms as he stood.  He’s 6’2” when he’s upright and his height usually surprises people when they see him stand for the first time. I used my legs to help direct him as we pivoted to the side of the bed and I lowered him to a sitting position. As he lay back, I picked up his legs and swung them onto the bed.

“You do this by yourself every day?” the nurse asked.

“Yes. It’s really not that hard after the initial pull. I use my knees against his to help him straighten upward.”

“It looks hard; you must be really strong,” she said.

Some people may take that as a compliment, but I felt like she was saying, that’s too difficult for us to do. I left for work worried that he would be confined to the hospital bed all day long and when I returned at night my worry was confirmed. Someone had even written on the white patient information board in his room “bed rest”.

My blood nearly boiled, but I took a deep breath and asked who wrote the “bed rest” order. No one knew, so I wiped it off the board. “He can lose strength so quickly and with me being the only one to transfer him at home, I need him to stay as strong as possible.”

“You have your routine and you’ve been taking care of him for a long time. It’s second nature to you, but it isn’t to us,” the nurse said.

I knew she was right, it is second nature to me and not to them, but I was also right, he needs to move to keep up his strength. By both of us being assertive and expressing our concerns, we came to an understanding with a plan for physical therapy while he was there. I didn’t necessarily like that they wouldn’t get him up and it’s hard for me to understand that some nurses and aides are not comfortable doing transfers, but we found some middle ground. I realize that rehab centers are different than hospitals where the majority of the patients are capable of walking or transferring into a wheelchair with minimum assistance and transferring Mark does take more assistance. However, I do it every day so it’s an obvious part of caregiving to me.

It’s not always easy to express what I think and feel in a positive way, creating mutual respect, when I view things differently than another. I don’t want to be passive by giving into what I don’t believe is right. If I don’t express my feelings, I get upset inside and after time it can build until I explode or become aggressive by yelling or being sarcastic. I don’t want to be disrespectful of others and their opinions. Being assertive is the ideal middle ground—where I want to be. Sharing what I have learned through my experience with professional caregivers can be intimidating and difficult. Tuesday I’ll share some great information I found on how to be assertive without offending another.

What positive experience have you had sharing what you know in a difficult situation?

The Receiving End of Caregiving, Part 2

Thank you, Ann, for sharing the rest of your rewarding experience of being on the receiving end of caregiving, which is good reminder for the professionals, as well as friends and family, on what is important to the ones receiving care.

Written by, Ann McDougall

Ann & Liam in bed

I knew I was in the best place while I was in the hospital. It was where I needed to be at the time and that’s just how it needed to be. I accepted my situation and felt at peace with it. I was lucky enough to have an end in sight because a lot of people with health problems do not.  Every now and then I allowed myself to have a hard day, a down moment, or a good cry (in the bathroom so no one would walk in and see me).  Sometimes I’d feel angry, but then I’d to go back to having a good attitude, because a bad one wouldn’t get me far. I chose how I reacted to my situation. Yes, it was difficult at times, but I knew it didn’t help me to think miserable thoughts.

I had some wonderful nurses in the hospital. They did their best to make sure I felt at home by allowing me to have many comforts, like my own pillow and pictures of my family. My son, niece and nephews would often color pictures and tape them all over my walls and the nurses would comment when they saw a new one.  I appreciated the nurses who took the time to talk to me about my personal life and share a bit about their own instead of just asking the usual medical questions. One nurse, Michelle, sat with me on Pioneer Day and watched fireworks from my window because my family was not able to be there with me.  I loved it when nurses would come into my room just to say hi to me even if I wasn’t their patient that shift. It made me feel important and not forgotten. They were considerate of our family time. My husband, David and son, Liam would usually come to visit in the evenings and if a nurse came in to take my vitals, they always asked if they should come back later. Their kindness made me feel like a person, not just another patient. They celebrated with me each day I stayed pregnant because every day was a big accomplishment. I had a white board across from my bed where we kept track of how far along I was and each morning as we’d change the number, they would congratulate me on making it another day. They called our baby, Ariana by name when checking her heart beat twice a day. They made me feel like I was carrying a precious little one; it wasn’t just another pregnancy.

Meeting others in a similar situation helped me cope. There were a few other ladies who were on hospital bed rest and we were able to meet for lunch once a week to visit with each other in our rooms. It was therapeutic to talk with each other about our struggles and situations. They could empathize with the hardship of being stuck in a hospital bed, leaving our husbands and children at home without us, afraid for our unborn child’s life.

 

Most people like to be busy doing something productive, to feel like they have a purpose. It’s hard to feel productive and purposeful when you are completely relying on others to take care of you. I found it important to find something to focus on, some little thing to do to keep busy. While in the hospital I learned how to crochet. I made many things for our baby, our son and other people, which helped me feel important and needed. It gave my mind a distraction and my hands busy when I couldn’t do many other things I wanted to do.

Ann & LiamI had a lot of time for thought and reflection. I feel like I came home from the hospital ready to be a better parent. I have more patience with my son. I appreciate my husband more than ever. He has always been a great dad, but he showed me how extra ordinary he is by being an even better one. He took care of our house, did the grocery shopping, paid the bills, and took care of the pets while working full time. I was worried about how he would do it all, but he did just fine. He was so thoughtful and loving to me. On occasion he would stop by before work to say hi and surprise me. He did his very best to visit every single day and made sure our son came just as often. We were even able to arrange for our son to sleep over with someone else so that my husband could sleep at the hospital with me every now and then. The time together was important for our relationship.

Ann's kidsI have been blessed by seeing how many people were willing to serve my family. I was able to focus on the pregnancy and not worry so much about if things at home were being taken care of. I was humbled by how much my family was there for me. I knew they loved me, but they showed just how much by all the things they did for me. I loved it when my dad would stop by on his lunch breaks or my sister-in-law would bring her kids by to see me. They all came on Father’s Day and had dinner with me. I’m sure they would have rather been home, but it meant so much they brought the party to me. I have learned I can rely on my family and I hope they know how much I appreciate and love them.

 

 

The Receiving End of Caregiving

Written by, Ann McDougall

Ann & ArianaPregnancy has always been a difficult journey for me and my last pregnancy was no exception. I was high risk from the very start. Because of complications in past pregnancies, I was diagnosed with incompetent cervix. At nine weeks I was put on modified bed rest at home because I started bleeding. The doctors didn’t know the cause of it and said it wasn’t related to the incompetent cervix. At twelve weeks I had a planned surgical procedure done called a cerclage to help me stay pregnant. The cerclage failed at 21 weeks, causing more bleeding and a tear in my cervix. I had an emergency surgery, the second cerclage placed and the tear repaired. I was then put on strict bed rest at home. I was only allowed to get up to use the bathroom, shower, and get a quick bite to eat and had to be laying down the rest of the time. After a week of strict bed rest, I started hemorrhaging and both cerclages had to be removed because mine and our baby girl’s life were threatened. I was told I was most likely going into labor and there wasn’t anything that could be done to stop it. The baby wasn’t developed enough to live if she was born.  I was admitted to the hospital in hopes I could stay pregnant a week or two longer so the baby would have a chance of survival. The doctors didn’t think I would make it another day, let alone the 2 more weeks we needed to reach viability. We would do anything to try to keep me pregnant just a few weeks longer. We had already said hello and goodbye to our precious twin boys the year before. We did not want to give up on our daughter and knew being in the hospital was the best place for me. I was told I would remain in the hospital until the baby was born. I ended up staying in the hospital for almost 9 weeks and was able to go home on strict bed rest for the remainder of my pregnancy. The hard work paid off and miraculously our Ariana was born just 3 weeks early at 37 weeks and is healthy and doing well.

Being on bed rest is taxing in various ways. I wasn’t able to care for myself, or our 3 year old son, Liam, or our house, yard, six chickens and our dog, Harley. I had to completely rely on my husband, David, and other people to do everything which I had previously done for myself. It was difficult emotionally and mentally to let go and let things be done in a different way than I would have done them or to see things not get done at all. It was awkward to ask for help and feel like I was imposing or asking too much of those who had already done so much. I missed getting out and seeing my family, friends and neighbors. I felt isolated and lonely. It was challenging to express how grateful I was for all those who helped my family. I felt guilty for not doing more to make things easier on those who helped, even though I did my best with what I could at the time.

David & ArianaBeing in the hospital for so long was a whole new level of taxing. Everything was taken from me— my independence, privacy, familiar people, food and home. I missed being on my own schedule and not having complete control over my environment.  It was tough to watch Liam struggle with his tender, immature emotions as he tried to process the situation and not know how to help him or be there for him like I wanted to be. It was heartbreaking to watch David struggle with all the new roles he had and not being able to help ease his burdens as well as feeling like a source of stress for him. It was hard to feel so helpless.

People have asked me how I was able to be on bed rest for so long, especially in the hospital with a child at home and a husband who works full time. I couldn’t have done it alone. We had family members who took over childcare and neighbors and friends from our church who watched after our house and pets.  When my cousin, Lisa, found out about my situation, she came right over with her calendar and asked what days she could take Liam. She didn’t casually say, “Let me know what I can do to help.” She proactively offered specific help and then followed through by watching him many times. I also knew that I could call my sister-in-law, Krista, and she would take him any time I asked. My mom was the one we relied on the most. She did her best to watch Liam as often as she could and be the one consistent childcare provider. She worked at a school so it was tricky finding people to watch him on the days she had to work. Once school was out for the summer, she was the one who had him every day. She sacrificed so much to be there for him so I could focus on my pregnancy. She did not return to work after the summer so that she could continue to care Liam and eventually me when I came home from the hospital on bed rest. I will never be able to repay her for all that she has done for our family.

Ann's movie nightOther people helped by being there for me on an emotional and social level. Friends brought me books and movies, came to visit and even had a movie and popcorn night in the hospital. Some brought me snacks and meals, which were also appreciated. Many people from church brought us dinner for months while I was on bed rest at home. It was a huge help. I wasn’t shy about accepting food and even now I miss the good meals that were brought and even more, the people that brought it. I loved seeing my friends and neighbors because I wasn’t able to get out, so it was nice they came to me.  It helped to have visitors or even just calls or texts from people letting me know that they were thinking of me. I may not have always said thank you, but I thought it. The help never went unnoticed and was always appreciated.

Thank you Ann for sharing your story of endurance, persistence, fortitude, appreciation, and hope. I’m thrilled you have the blessing of your son and daughter—a great reward for your sacrifice.