A Year with Home Nursing

"You have been through a lot of hardships with your daughter. What kind of supports do you have?" 

The social worker sat there waiting for my reply. Supports? I rambled off something that people typically say when they are caring for a loved one with special and medical needs. 

With concern in her face, the social worker asked how I was caring for myself. Rarely had anyone at these medical appointments for my daughter had ever asked about me, my ability to cope, or my ability to physically do all that caregiving demand of me. 

This conversation was the catalyst for several changes I made near the end of 2019. At that point in time, I was struggling. Caring for someone, who had been in and out of the hospital for years, had taken its toll on me physically, mentally, and emotionally. The stress that comes with caring for a child with many development AND medical needs cannot be clearly articulated in a paragraph or two. The effects of the prolonged stress are possibly easier to convey. 

I lived in a state of exhaustion. I was always tired. Always! My body had aches and pains from muscle tightness related to tension I held from stress. Anxiety constantly tried to control my thoughts and life. For me, anxiety was unrelenting thoughts trying to keep myself busy or in a state of stress. Even when life was calm, my mind found ways to keep me in a state of alarm. 

For these reasons and more, one of the steps I took to help myself was to look into home nursing for Jaycee. It was one of those things I thought about doing but never really investigated how to secure it. In the past, I had convinced myself I was doing fine and never took the bold step to pursue it. Since I was Facebook friends with a mom who had home nursing for her children, I sent her a message asking her for advice. She graciously responded to my many messages and helped set me on a path I never would have found on my own. (Thanks Shelly!)

I discovered that Jaycee met the requirements to be deemed "Medically Fragile" by our state, which opened up several resources for our family. One of these being home nursing. Once I made a decision to start home nursing, it took a couple of months to complete the paperwork and get everything in place. I needed that time to process how life was getting ready to change. 

It wasn't an easy decision for me to bring in nursing. I was conflicted. I felt I was Jaycee's mom, and I should be able to do all of her caregiving. By bringing someone in, it was an admission that I wasn't able to adequately care for her. That didn't feel good. Yet, I couldn't help but see that my stress and physical symptoms were too much to ignore. If I were being honest, there was no way I could continue that intense amount of caregiving she needed for the rest of her life. 

At the time home nursing started, Jaycee was taking 8 daily medications. Two more nebulizer medications were administered twice a day. She had a few more medications used as needed. She did a minimum of 2, 20-minute vest therapy sessions and 2 short sessions with a cough assist machine each day. It took nearly an hour every morning and evening to complete these necessities. Jaycee wore a bi-pap at night, which generally went well. When she was sick, however, she needed monitoring all hours of the day and night and increased medications. 

Besides her medical needs, Jaycee had daily developmental needs. She is almost independent in the shower and restroom, but "almost" means there's some supervision that must take place. Though she was 13 at the time, she couldn't be left alone like anyone her age. She doesn't understand consequences, dangers, or safety issues due to her intellectual disability. 

There was part of me that hated giving up parts of her care, and part of me that desperately needed a break. I had to remind myself that all of this was for Jaycee's good. If I were in a better state, I could care for her with much more patience and joy. Besides that, I had to consider the future. One day, she may need someone to take care of her besides me. It might be good for both of us if that starts sooner than later. Perhaps, we both needed a bit of separation, and this was a small step in the right direction. 

When our nursing hours were approved, we had to decide when we wanted a nurse at our home. Even though I was told it would be difficult to obtain, I asked for night shift hours to be filled. In a few weeks, we interviewed our only candidate for the position. That nurse is the one who has been in our home for nearly a year. 

The nurse generally works 3-4 nights a week for 12 hours at a time. She comes in the early evening hours. She does all of Jaycee's PM medications, nebulizers, and other interventions. She helps Jaycee with the showering and dressing for bed. The nurse takes care of the baths/ointments that are done to control staph infections. The nurse washes her vest and cleans her nebulizer parts. Generally, she helps her get a snack after bath and entertains her with games. The nurse watches her oxygen levels all night and her sleeping positions through the baby monitor. If her bi-pap slips off or her oxygen dips, she is ready to rectify the situation. When Jaycee has been symptomatic and needed medications throughout the night, the nurse is the one who completed them while I slept in my bed. 

It was an adjustment for me at first. It was strange to have someone in my house hanging out with us most nights. I had a hard time falling asleep with a complete stranger in the house at the beginning. I was hoping the nurse wasn't going to snoop through my house or steal our identities. When Jaycee was sick, it was difficult to trust the nurse to take care of her. I have always been the person to do it, so it was huge for me to let go of that responsibility. 

Another objective with home nursing was to have time alone with my son, Elijah. At first, we went out at least one night a week for short outings. I took him out to eat or to a local store for him to shop. We drove around looking at Christmas lights and went bowling. It was nice to have one-on-one time with him. It was peaceful to simply go and have special time together. My husband, Elijah, and I spent New Year's Eve at the movie theater watching Star Wars for a late showing while Jaycee stayed home with the nurse. It was really fun night. Unfortunately, the pandemic stopped our outings for the most part when everything was shut down. Hopefully, we will get back to more frequent outings. 

My husband and I have had to work through some guilt related to leaving Jaycee at the house with the nurse. We know that Jaycee doesn't do well with activities in the evenings due to her stamina. Still, we feel bad about leaving her behind. Elijah is important too, and time alone with him has been scarce over the years. Much of our lives have revolved around Jaycee's needs and care; nursing has allowed us to consider the needs of the rest of the people in our family. For the most part, Jaycee is satisfied to stay home watching Disney movies or YouTube videos. 

We are coming up on our one year anniversary with home nursing. It's been a year of adjustment, learning, and growing. Jaycee befriended the nurse immediately and transitioned well. The rest of us have had to work through some emotions and thoughts of having someone enter our personal space and family life. All in all, it has been a good decision for our family. We're thankful to have this support. It's been really challenging but good for me to let go a little bit. I have especially learned that other people can be trained to help our family, and it's been reassuring that Jaycee can have good care even if it's not done by me or her dad. 

Being "Mom" to My Daughter with Down syndrome

My daughter can say "mom" in a half-dozen ways. 

"Mom" is the name she calls when she sees me in the morning. Jaycee seldom wakes up grumpy, unlike myself. 

She giggles out a "mom" when I do something that amuses her. It could be the funny way I sing a Disney song or a family joke that I know will get her to laugh. 

Sometimes, "mom" is a call for help. The help Jaycee needs may be easy to spot or I may have to decipher what's wrong. 

"Mom" can be said in a frustrated tone. Jaycee may not understand what's happening in a particular situation, and I need to try to explain something to her. 

She has a scared voice that she uses with my name. "Mom" may mean I need to reassure her that everything will be fine. 

In the past year, Jaycee has developed a "mom" said in teenager tone. If I do something to embarrass or annoy her, she lets me know in the specific tone she says my name. 

The first few years of her life, I barely heard any words come from my daughter. Jaycee first called me "mama" much later than most children. Her tiny voice was so sweet and hearing my name even sweeter. 

I am her mom. It's a role I adore and take seriously. I haven't always known how to simply be her mom while navigating all of her needs. It's been a complicated journey. 

When my daughter was born with Down syndrome 14 years ago, I was a scared twenty-something, first time mother. I didn't have much confidence in my child rearing capabilities at that time period; I certainly didn't think I was equipped to tend to Jaycee's unique needs. It is no exaggeration to say that her care was extremely intense for the first few years. At first, the primary concern was her heart defect that needed two open heart surgeries, oxygen at home for a few months, and medications for awhile. My calendar became filled with specialty appointments for her heart and other medical conditions. I had barely ever stepped foot in a hospital prior to this; I was suddenly forced to learn the ropes quickly. 

Back then, I was a new mother who wanted nothing more than her daughter to be healthy. Her care required me to do a bit of nursing at home. Being her "nurse" was something I was unprepared to do. I did not know the basics like filling up a medicine syringe let alone more difficult tasks like watching for signs of worsening congestive heart failure. It was overwhelming, and I second-guessed myself often. I felt the weight of being responsible for her little life. If she wasn't gaining weight or keeping down her medications, I felt it was my fault. Being Jaycee's mom meant doing the medical stuff that sometimes made me feel stressed, uncomfortable, and worried. I did all that was required of me and then some, but my motherhood encompassed medical aspects that many moms do not understand. 

It was a heavy burden that I tried to carry far too long. I felt that if I did everything right, I could achieve her healthiest self. What I didn't understand at the time was that there were many variables out of my control. My parenting and nursing skills couldn't prevent all the issues with her eyes, heart, lungs, and ears. Finally understanding that was freeing in a way. 

Early on when my thoughts were consumed with medical issues or basic baby care (like those months of lovely round-the-clock feedings), her developmental needs kept me busy too. We started her in home therapies when she was two months to address her low muscle tone and delays. It was a blessing and a curse to have home therapies. I loved having access to well educated therapists in our home, but I put way too much pressure on myself to address her delays in our mother-daughter time. I became my daughter's therapist, which wasn't always a good or noble thing. Being a speech-language pathologist who works with children only intensified the blurry lines I created between assisting my child in her development and personally trying to fix her delays. Therapy was part of my motherhood experience but sometimes it became too much of my focus. 

These are examples of how I struggled to find balance in being mom to Jaycee. I let aspects of her care take center stage. It was hard for me to simply sit down in a rocking chair, hold my baby, and be in complete peace. We had those moments; don't get me wrong. Her diagnoses and extra needs often kept my mind and actions busy with a running lists of concerns, to-dos, and fears. 

I'm so thankful for personal growth because I eventually found the balance I desperately needed. I discovered how to take care of my daughter's medical needs and help her achieve new skills while being a fun and loving mother. I have become the mother that my child needs, loves, and appreciates. When she calls out for "mom," I am there, ready to help her with whatever she needs. 

I'm happy to do all of that for her. She's my daughter. I'm her mom. There's nothing more natural than that. 

October is Down syndrome awareness month. Each year, I try to spotlight some aspect of Down syndrome to bring understanding to those not personally acquainted with an individual with Down syndrome. I encourage you to learn about Down syndrome, appreciate those with differences, and celebrate the lives of those with the diagnosis.  

When Your Family Gets Smaller

Last week, I said my final good-bye to my grandma, Ruth. She was the last living grandparent I had, and my world feels a bit smaller now. 

My grandfather, Wilford, was the first grandparent of mine to die when I was in the third grade. My mom worked at a school and told a co-worker about his passing. One of the meanest boys in school overheard the conversation and promptly approached me in study hall. 

"Your grandpa died," he said almost gleefully. I assume he was thrilled to be the first one to share the news with me. 

I was confused and unsure if he was telling me the truth. My mom was waiting until the end of the school day to tell me. I had never been confronted with the reality of death. Still as an adult, it's hard to process at times. 

It's been many years since Wilford passed. I barely remember much about him; most of my memories are shaped by stories from other people. 

Grandpa Ernie was the next grandparent I lost. I was in college when he passed away. Ernie and his wife, Ruby, lived a few miles from my house. I spent much of my childhood at their home. I climbed trees in their yard, looked for frogs, went fishing in their pond, and numerous other "country" activities. Ernie was a gentle spirit and often showed me his latest project. Ruby taught me to sew on an antique sewing machine; she was always making something. She fixed the most delicious spaghetti sauce, which I always requested when given the chance. Ruby made giant pancakes the size of a large plate. I watched her do it many times as a child, but now as an adult, I'm lost as to how she made those perfect pancakes. I had the distinguished honor of being the only grandchild she ever spanked. I was playing too rough with my brother and her paddle had to intervene. Ruby lived to age 90, and she still talked about my act of disobedience even then. I think I apologized for that momentary act of defiance for over 30 years. When she died, I was married with my two children.  

Ruth was the only grandparent I had left. I had regular visits with Ruth as a child, but I got to know her better as a teenager. She moved in with my parents when I was in high school. With her came an assortment of cow figures and collectibles; much of her life was spent on a dairy farm. Ruth introduced me to cross-stitching, and she was amazing on the sewing machine as well. Ruth and I had many conversations over the years as I finished college, got married, and had children. 

 

The last conversation I had with my grandmother was easy to remember, September 11. I was charged with the task of getting her to eat something for her evening meal while my parents were out for a few hours. When I arrived, she was sitting at her spot at the kitchen table. When I lived in this house, my spot was just left of hers. Ruth told me that she wasn't hungry and wanted that to be the end of it. 

"I have to get you to eat or my mom will be mad at me," I replied determined to do my job. 

I rummaged through the refrigerator offering up suggestions based upon what I found. Grandma declined them all. I opened the pantry and jokingly started naming off things I discovered. 

"Do you want carrots?"

"No."

"Do you want a granola bar?"

"No," she said with a chuckle. 

"Do you want popcorn?" (She loved popcorn.)

"Nothing sounds good," she said.

"Do you want a Little Debbie snack? Green beans? Soup?"

Then I moved to the freezer and found the food that Ruth ultimately relented to eating most likely because she saw I wasn't going to give up.

I popped the frozen turkey dinner in the microwave and gathered up the utensils she would need. She made brief conversation with me while the microwave hummed in the background. She looked surprisingly well considering the state she had been in a day or two prior. 

At the long beep, I stirred the food and carefully placed it in front of Ruth. I said good-bye as I rushed off to get back to my daughter who was being entertained by her cousins next door. That quick good-bye was our last interaction here on Earth.  

The world feels strange right now. When I saw Ruth's empty chair at the kitchen table last week, my mind pretended she was napping in her room and that this wasn't final. I am, however, grateful that both of my grandmas lived to their 90s. I am blessed that I am 40 years old and have both of my parents. Many people aren't so fortunate. 

The family feels a little smaller as these and other important losses have occurred over the years. Yet, I see my nephews and nieces growing up and getting older. In them, there are possibilities for our family to expand. 

For my 4 grandparents that are no longer here, I look to heaven and say a prayer of thanks for the ways they have shaped my life.