The Other Health Issue Happening Now

I need to tell you a story. It’s one that I don’t want to share necessarily, but it’s time.

I’ve struggled with anxiety for years. If you have lived through the events I have as a parent of a child with special and medical needs, you would understand how it all came about. I’ll give you a snippet of our journey and explain why it’s relevant for today.

My 15-year-old with Down syndrome, twice repaired AV canal heart defect, and Wolff-Parkinson White syndrome (twice ablated) struggled for years with her health. I remember the first time Jaycee was hospitalized for pneumonia when she was 1. I didn’t understand the different levels of respiratory support and how the hospital system worked. Within a few years, I would gain a full education. I would come to know the stats for heart rate and oxygen saturation that would result in a hospital admission. I discovered when a nasal cannula, high-flow oxygen, c-pap, and ventilator would all be needed as the lungs worsened.

For years, respiratory viruses ruthlessly attacked my daughter’s body. A simple cold virus (rhinovirus) escalated to Jaycee needing a ventilator not once but twice. Have you seen someone on a ventilator? The sounds and alarms from it are jarring. The sound of her coughing and being suctioned was something I wish I could erase from my memory. Spending weeks in the hospital not knowing what the next hour would bring was stress I cannot adequately explain.

Respiratory event after respiratory event with Jaycee caused problems for me. I was stressed to the max. Anxiety over her health, fear of her being sick, and exhaustion of her care changed me in an unexpected way. Keeping her healthy consumed my life. For example, there were a few times in church when the person behind us would cough and my mind would race. I viewed circumstances like that as a real threat to my daughter’s health. My mind would supply me with a hundred ways in which an encounter like that would be detrimental for Jaycee. Keeping her healthy affected all of our decisions and was at the forefront of everything we did. Despite our best efforts, she struggled with normal colds and viruses. Every illness exacerbated the anxiety I felt. I took it upon myself to somehow keep her healthy. It was an impossible feat given the condition of her lungs. 

Do you know what years of ignored anxiety does to a person? I know what it did to me. I became anxious all the time. Literally all the time. I never had peace. Even when there was a reprieve from the illnesses, my mind would keep me in a state of anxiousness. I had lived with high stress and adrenalin for so long that I struggled to cope in “normal” life. I was jumpy too. If a family member entered a room I was in, I would jump like someone had intentionally tried to scare me. At one point, my body tensed up to the point that my left arm became numb. Muscle aches, jaw clenching, teeth grinding, and exhaustion were all normal to me. It was only through medication and counseling that I was able to get some control of the situation.

For the past 2 years, Jaycee has been exceptionally healthy thanks to Mayo Clinic giving her a successful treatment plan for her lung conditions previously not identified. These two years without illnesses requiring the hospital have been wonderful. Still, the anxiousness and stress have not gone away. My mind was trained to live that way for years, and I have to make a conscious effort to keep those things at bay even now. I find things to stress about when there is absolutely nothing stressful. Intrusive thoughts create stress for me, and I have to work hard to identify them to decrease the anxiety. I always thought if Jaycee’s health would be better, my mental health would be better. It wasn’t that easy. I had created a monster in my mind and didn’t know I had no control of it.

So you have to understand that this pandemic has caused me distress at times. When the virus first hit and the lockdown started, I was terrified of COVID-19. I had people in my life telling me to fear it because Jaycee would be detrimentally affected by it. Fear was easy to find all around me, and it was fuel for my anxiety. In the beginning, I stayed home and dreaded leaving my house. I worked from home during that time, so I only left for food or medicine. Each time I left the house, I was anxious. My heart would race just being out and near people. Seeing people in gloves and masks pouring out sanitizer every five seconds made me more anxious. (People did a lot of strange stuff in public during those first few months.) The logical part of my brain could not compete with the anxiety that already had a strong root in my life. Worse yet, I was surely projecting anxiety onto my kids since they were typically with me.

At first, my solution to decrease the anxiety was to send my husband, who was home full time as well. He reported he had no qualms about going out in public. Even though we have had the same history with my daughter, he never had the anxiety issues I did.

Little by little, I rejoined society mainly because being home all the time was horrible for me. For a while, I had anxiety every time I left the house. I didn’t want to get the virus. I didn’t want to make a mistake that would affect my daughter. Being around too many people would truly distress me. After church one Sunday, I asked my husband if he enjoyed the service because I did not. I could not get past the fact that I was in a group of people. The fear and anxiety were constantly eating at me. My husband said he was fine. Two people sitting side by side in a church and experiencing two different things. One struggles with anxiety, and one does not.

At this point, I had to decide what to do. I could allow the anxiety to rule my life and control what I did. The other option would be to push myself to have a life outside the house while taking some precautions. The reality was that my husband and I need to work. We couldn’t stay locked in our homes forever. For me, the more I carried on with normal life activities, the better I did. You cannot live your life being controlled by fear, especially as a person of faith.

I guess I should take a moment to declare that I do believe the virus is real and can be life-threatening for some. However, I also feel fear is heavily pushed upon us on the news and social media, and that level of fear is not healthy for people with my history. The longer the virus lingered, I assumed at some point we would have a run in with it.

In January, that moment occurred. My husband and both children were positive for the virus. We aren’t sure where we got it, and it doesn't matter anyway. I was incredibly stressed when Jaycee tested positive. A few months prior, two of my close family members were in the hospital with COVID-19, so of course that was on my mind. I don’t think I slept much for about a week as I felt the need to check on her often. We intervened quickly for Jaycee, and we were blessed that she came through it relatively easily. The really odd thing was that I never got the virus. I tested negative twice and later had a negative antibody test. I didn’t avoid my family at all, so the mystery of how this virus acts continues. I ended up getting the vaccine so I had some level of protection to be on par with my family.

After my family recovered, we made a list of things we wanted to do now that the virus wasn’t an immediate factor. We all had a certain level of immunity, and we were going to take advantage of it. We looked forward to the activities on the list. We all needed to feel normalcy. We didn’t throw caution to the wind, but some people may say that we did. The intense level of anxiety that stemmed from trying to avoid a germ no one can see was no longer there, and it felt great. I hadn’t realized the toll it had taken on me until that burden was removed.  

I know this post will bring out lots of opinions, but I want to stress one point. Don’t play with anxiety. If avoiding the virus at all costs is giving you stress and anxiety, it is not healthy. You are accepting one illness for another. You may think that you will be able to go back to normal patterns of thinking when this is all over (if it ever is), and I want to warn you that it may not happen.

It’s important to recognize the impact stress and anxiety may be having in your life. I’ve described what happened to me, but the symptoms for you may be different. You may want to look at common signs of anxiety. This article on anxiety related to COVID-19 is a good read too.

God Speaks-Special Needs Edition: Part 1

If you aren't familiar with the Christian faith, this post may seem a bit odd. In fact, this whole series I plan to write will probably feel very strange. Stay with me, and I will try to guide you through this very complicated and simplistic topic of how God speaks to people.

God is real and active today. As a Christian, I understand God wants to have relationship with people. He wants to speak to those he has created. The Bible tells how God spoke to people in the past. It also provides insight into how God communicates to people even today. There are numerous examples to look at in the Bible. Today's post will look at God speaking specifically through dreams. As this series goes along, we will look at other ways God speaks as I give examples from my own life. 

Let's start with this passage in Job that shares that God speaks to us.  

For God speaks again and again,

    though people do not recognize it.
15 He speaks in dreams, in visions of the night,
    when deep sleep falls on people
    as they lie in their beds.
16 He whispers in their ears
    and terrifies them with warnings.
17 He makes them turn from doing wrong;
    he keeps them from pride.
18 He protects them from the grave,
    from crossing over the river of death.

Job 33:14-18 NLT

God can speak to us through our dreams. Sometimes, the dreams are given as a warning or to prepare us for the future. In Genesis 40, Joseph interprets Pharaoh's dreams, which ended up predicting the future and giving wisdom for how to deal with an upcoming famine. Dreams can send other messages too. Jacob had a dream about angels on a stairway and received a word of promise from God. (Genesis 28) Joseph received instruction on where to go with his wife and baby Jesus in dreams more than once (Matthew 2). There are other examples in the Bible of God speaking through dreams. 

Photo by Ketut Subiyanto from Pexels

And God Speaks: Dreams

I have experienced dreams from God many times. I dream regularly at night. My husband claims he rarely has dreams. Neither of us can quite relate to the other's experience. Though I often dream at night, only once in a while do I recognize a dream as being from God. My husband has asked me how I can tell the difference between regular dreams and Godly dreams. For me, it's an easy thing to distinguish. 

The dreams I receive from God are very vivid. There's a difference in the way they "feel." The most distinguishing factor though is the amount of the dream I can recall when I wake up. A dream from God sticks with me. I wake up thinking about it and remembering almost all of it. I want to meditate on the dream. Sometimes parts of the dream are repeated, which is a clear sign it's from God. It's pretty easy for me to recognize a God dream now, especially because I have had so many in the past. 

Once I feel like I have a dream from God, I start looking for the meaning. Sometimes, the meaning is simple and the message clear. Other times, I have to sift through layers of the dream and seek the meaning in prayer. I have a Christian symbols book that I sometimes consult when deciphering the dreams. The book has helped in some cases and brought confusion in others. I use the book as a reference and not the final authority. Sometimes, I share the dream with other Christians (like my father) and see what they think the interpretation is. In the past few years, I have found I often get the answer when I sit down and write out the dream with as much detail as I can. Usually after that, the answer comes without really trying. I don't know why that works, but it does for me. 

Some of the dreams I receive are short. Others are long. Some are bizarre, and others beautifully crafted. Since becoming a parent to a child with special and medical needs, I have had dozens of dreams from God. Today, I am sharing a few with you as well as my interpretation of the dream. 

The Twins, Sept. 2008

The dream: I gave birth to twins (a boy and a girl). They needed to be in the hospital for a few weeks, but I wouldn't go and see them. The doctors asked that me and all of our family come to the hospital to do a trial day of taking care of them. Their beds were going to be in the waiting room. The dream ends with me never seeing either of them. 

My interpretation: Ten days prior to this dream, I had suffered a miscarriage. I was already a mother to Jaycee at the time, and we were trying for our second child. I had many reservations about having a second baby. Jaycee's Down syndrome, congestive heart failure, and 2 open heart surgeries had made me fearful of having a second child. When the second pregnancy abruptly ended, I felt more fearful and confused. Nothing about motherhood seemed easy for me. 

To me, this dream was a message from God about what had just happened and what was going to happen. One baby was with God now, and I have to wait for our reunion in heaven to meet her/him. The second baby was coming one day, and I was in the state of waiting for that baby. The doctor represented God as my healer and was telling me to move forward. Babies are also a sign of a new beginning. This dream was a full confirmation that I shouldn't be afraid to try again. 

A House Nearly Destroyed, June 2019

The dream: I was leaving our house to pick up some food. I started to get into my vehicle to leave when I heard a loud sound. I looked up and in the distance there was a wooded area. One by one, I watched as the trees were falling down. The noise was ferocious, and it scared me. I thought an earthquake was occurring, and I was filled with anxiety. I raced back into the house yelling for my husband to warn him. I was panicking and trying to figure out what to do. My father, who was in the house, told me, "You tell it to stop." I started screaming, "Stop!" "Devil, you stop!" I screamed this as loud as I could while standing in the house. 

When I stopped screaming, one final tree finished falling, and the top of that tree came just inside an open window of the house. The destruction and loud noises all stopped. We walked around the house as I looked to see what was destroyed of ours. I was expecting to find severe damage. As we tour the house, the only damage was superficial and cosmetic. 

My interpretation: This dream occurred following weeks of stress. Jaycee had been having breathing issues for several weeks that required lots of monitoring and interventions from me. She was admitted into the hospital briefly before finally getting better. This dream was a direct message for me and how I respond to those health scares. I tend to panic and be frightened during Jaycee's illnesses. I am always worried that Jaycee's life is going to end in one of these illnesses (i.e. the part of the dream where I expect severe damage). In fact, some destructive things happen to Jaycee and our family as a result but our foundation is secure and safe. My father in the dream represented God. He was telling me to use the authority that God has given me. I don't need to call on others to pray or intercede for Jaycee. I can do it; I just need to speak and quit panicking. Fun fact: May 2019 (just before this dream) was the last time Jaycee was admitted to the hospital as of the writing of this. Praises!

A Heart Issue, Nov. 2020

This was an odd night where I had 3 different dreams. 

Dream 1: My son Elijah is in a hospital bed located in a gymnasium. He's going to die of a heart problem. Knowing this, I ask the only other person in the room if I can call other people to be with us. The man warns me, "If you call someone, make sure they can make the right decision when the time comes." I call no one. Elijah's heart stops on the monitor. I put my hand on his chest, and he revives immediately. I hold him in my arms knowing that he is going to die. Elijah looks very sick and has his eyes focused on me, playing with my hair as he slips off. I am sad for Elijah. 

I wake up very alarmed with this dream. It took me quite awhile to get back to sleep. When I did, the next dreams happened. 

Dream 2 & 3: I'm in a nursing home. My grandma (who had recently passed away in real life) was near death in the hospital bed. She falls out of the bed, and my daughter Jaycee climbs in it. Jaycee is going to die of a heart problem, but we are both at peace. I never touch her or react. 

Suddenly, I'm at work doing a speech therapy home visit. A toddler crawls into the room. He is deformed and very sickly. I scoop him up in my arms and try to comfort him. My co-worker and I try to figure out who this child is and who he belongs to. We eventually find his mother and start trying to talk to her about him. She gives us no attention and walks away. She knows her child will die of a heart problem and doesn't want to hear any hope we have to tell her. 

My interpretation: I struggled at first to understand this night of dreams. After the first dream, I was immediately worried for Elijah. I thought it was a literal warning for his health. Whenever I woke up from that first dream, I started praying for Elijah. I struggled to go back to sleep because I was so upset from the dream. It scared me. I drifted off back to sleep and had the last two parts of the dream. When I woke up that morning, I knew they were all related but was unsure of the meaning. By the end of the day, I felt I had the message. 

All 3 dreams featured a serious condition that was life and death. My reaction in the dreams was the focus. In the first dream, I saw success in ministering to my son (his heart revived) but it's short lived. I resigned to the fact that he would die. My first action (touching his chest) produced a positive change. However, my next action was to hold him and do nothing. This is an issue I've had in the past with situations with Jaycee. I'm full of faith and encouraged when a challenging issue turns around. But, if I'm challenged again too quickly, my faith is low, and I'm drained. The warning the man gave in the first dream was interesting and probably good advice. 

In the second dream, my emotions are better in that I have peace. My emotions don't dictate what I do. However, I don't do anything. I never use my faith or touch her. In the last part of the dream, I'm in my regular work setting with a co-worker, which makes me think I found someone to co-labor with (possibly a reference to the man's warning in the first dream). I take action in this dream. I don't get depressed or sad. I feel the urgency to do something. I hold this toddler the same way I held Elijah in the first dream, but this time I do it with a different posture. I seek the mother but I don't share with her about God's power to change the situation. 

The three dreams show growth in my actions and reactions. It also seems to indicate that I am ready to go beyond helping my family to ministering to other people. The dream is a reminder to use my faith, not be too emotional in situations, and to take action!

Parting thoughts

It is my hope in sharing these dreams with you that you can recognize God's attempts to speak through dreams. The scripture I shared in Job says that God speaks but people fail to recognize it. It's easy to blow off dreams and disregard some as simply strange. Other people may tell you the dreams mean nothing too. I hope that by sharing my experiences, you can learn how to apply this in your own life. 

Stay tuned for part 2 in this series! 

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. 

A Small Victory for an Anxious Mind

I hate to admit that I struggle with anxiety, but I do. Anxiety is something that has been part of my life as a result of multiple hospital traumas and stress with my daughter, Jaycee, who has special and medical needs. The degree to which anxiety has affected my everyday life has varied over the years. At times, anxiety seemingly plagued every moment of my day, making my mind so busy that I woke up feeling exhausted. Other times, anxiety was a mild factor, and I could actually feel relaxed during the day. If you never dealt with anxiety, it is hard to describe its hold and presence in one's life. I know this- I hate anxiety.

I do, however, love that my daughter has been healthy lately. After years and years of repeated respiratory infections, my daughter is on a successful plan of treatment. She is now on a 15 month streak of staying out of the hospital. (Thank you Mayo Clinic!) You would think that during these months of good health that my stress and anxiety would be next to nothing. The problem is that for years I lived in a state of stress- dealing with one emergency situation or respiratory illness after another. It rewired my brain to stay in a state of anxiety. I have to work hard to keep anxiety at bay. 

Despite Jaycee's good health, these past few months have not been without some stress. The virus shutdowns affected the jobs of both my husband and myself for months. This and a dozen other things have created bumps in life, which I am sure that other people can certainly relate to. 

In the past few weeks, I have been trying to refocus and work on calming that anxiousness that tries to bubble up inside of me. I started reading and working through some exercises in Less Fret More Faith by Max Lucado. Little did I know that I would have a small opportunity to practice what I was reading. 

Three to four nights a week, a nurse works a 12 hour shift at our house, completing Jaycee's medications and monitoring her breathing overnight on her bi-pap. Shortly after Jaycee went to sleep one night last week, her monitor started going off. It was odd, but I figured it was a false alarm. I was busy with my son, so my husband was the one who investigated the alarm. A false alarm can occur due to a sensor going bad, the position that Jaycee is sleeping in, or the sensor not reading correctly. It is a true alarm if Jaycee's oxygen level gets lower than normal or her heartrate gets too high. My husband was puzzled because it seemed that Jaycee had a true, short oxygen desaturation for some unknown reason. 

I wasn't too concerned...until 30 minutes later. The alarm went off again and indicated her low oxygenation numbers. It was bizarre for her to experience this with no other symptom. My husband and I had a quick conversation with the nurse and formed a game plan for the rest of the night if she continued to have these issues. It was getting late, so I went to bed. 

I started reading on my Kindle as I do almost every night. I was torn between going to bed as usual and freaking out about Jaycee's breathing and alarms. My thoughts swirled: The nurse will be watching Jaycee all night, so she will be fine. She will notice anything out of the ordinary. She will take good care of her. But, if she is taking care of her, I won't know what is going on. If I stay in this bed, I won't know what is going on with my own child. If something is off with her breathing, then I won't be able to work tomorrow. I will have to adjust many things quickly in the morning.

My brain was jumping from reasons why I should stay in bed and sleep to why I needed to panic. 

Fortunately, I was able to shut my thoughts down quickly and go to bed. It was a small victory for me. I will admit that I woke up at 5:30 that morning, about 20 minutes before my alarm, because I was ready to get the hand off report from the nurse. However, I rested well all night before waking up. 

I was happy to hear that Jaycee had been completely fine the rest of the night. Nothing else happened. There was no reason to be anxious or panic after all. I was thankful she was ok, and I was grateful that I handled this fairly decently. 

In years past, when we didn't have a nurse, I would have stayed up for an extra hour or two and watched her numbers on the monitor. I would have worried, literally paced the floors, and worked myself up into an exhausted state. Because I would need to see with my own eyes how she was doing, I would not have been able to go to bed. 

The victory that occurred covered two issues. First, I was able to rest and shut down my anxious thoughts. Secondly, I was able to let someone else handle the situation. Having a nurse in our home for the past 9 months has pushed me to give up some of my caregiving. I need help, which is what prompted the initial call for nursing. In the beginning, it was hard for me to accept the help and let the nurse do things with Jaycee that I have always done. However, on this night, I was able to trust the nurse to watch my daughter, so I could rest and continue with my normal activities the next morning. 

Some victories come with accolades, trophies, or headline news. This victory was an anxious mom sleeping in her bed. I hope and pray that I can be victorious the next time. 

How My Body Responds to My Daughter's Illnesses

I don't know what it's like to have a surgery. I'm never had one myself.

I don't know what it's like to be a small child in the hospital for an illness. I was a senior in high school the first (and only) time I was in the hospital for an illness.

I certainly don't know what it's like to be taken to the emergency room in the middle of the night due to respiratory distress. That's never happened to me.

I don't know how any of these things feel for my daughter, who has experienced them all many times, but I DO know what it's like for the helpless parent in this scenario.

Whatever I have experienced in a health crisis is nothing compared to my daughter. I want to make that clear. I can't imagine what her post-hospital thoughts and problems are. With her limited verbal skills, I can only glean from the behaviors she displays later on.

As my daughter's caregiver though, I have had my own set of problems that stem from caring for a child with chronic health problems. I have been reluctant to share them because I don't want to seem like I'm trying to make her experiences about me. But, this is the side of the story I personally know. My body and mind have been changed forever from Jaycee's surgeries, emergency respiratory crises, and over 30 hospital admissions. Here's some things I have experienced from my daughter's health issues:


Hearing Beeps and Alarms
When Jaycee left the NICU after a 10 day stay, I came home "hearing" the beeps, dings, and alarms that I had been listening to nonstop at the hospital. There were no monitors at home, so there was absolutely nothing making these sounds. My brain got accustomed to the constant noises in the NICU and had to adjust back to silence. I thought it was such an odd phenomenon of hearing things that weren't real that first time, but it's happen several times to me after subsequent hospital stays with Jaycee. Now, I know that I may come home hearing beeps and alarms that aren't there, but they will leave in a day or two.

My Son Talking to Jaycee while she's in ICU on Day Time Bi-Pap Use

Nightmares
After an unplanned hospital stay, it is not uncommon for me to have nightmares about the hospital once we get home. Generally, the scarier the hospital stay the more intense the nightmares are and the longer I tend to have them. After a few days in the hospital for a less severe respiratory issue, I might have a nightmare or two within a week of being home. My nightmares aren't about serial killers or monsters. They are usually intense dreams about some aspect of the hospital.

After a few of Jaycee's very intense ICU stays that required a ventilator, I have had nightmares on and off for months. Most of them were hospital scene based. Many of them involved Jaycee being in the hospital struggling to breathe while I was lost in the hallways, trying to find her room. (If you are a dream analyst, feel free to message the meaning of that dream to me.) Sometimes, I have woken up from these dreams with a racing heart and fast breathing. Sometimes, I wake up confused about where I'm at, especially if we have just gotten home from the hospital. I have to remind myself that she and I are both safe at home.

I learned too that watching movies or television shows that are hospital based can trigger nightmares. For awhile, I was watching reruns of the sitcom "Scrubs" before bed. I started having nightmares again out of the blue. Even though nothing scary was happening in the comedic show, something about seeing the hospital scenes depicted triggered something in my brain.

Muscle Aches and Tightness
This is the most frequent and long term issue I have. The muscles in my arms, neck, and shoulders get unbelievably tight. At first, I blamed the tightness on the lifting and moving I did with Jaycee during an admission. It took me months and months (maybe a year) to realize my tight muscles were a result of the stress of caring for someone in the hospital so much. My muscles became so tight that I physically could not make them relax. I tried a technique called progressive relaxation where you tighten and relax your muscles in a certain sequence to get your whole body in a state of relaxation. I literally could not relax certain muscles no matter how focused I was.

The tightness eventually led to my left hand going numb, and that's when I started to understand I had a real problem. I lived on nightly Bio Freeze or Icy Hot applications. For a time in my life, I made weekly massage therapy appointments. These were not luxurious appointments, these were a necessity. Every therapist commented on my knots and the extreme tightness of my muscles. All of them asked me if I had stress in my life. One described massaging my neck and shoulders as pressing against a hard rock. I finally got to a place where my muscles could relax. I won't say I'm a 100% better, but I can recognize the tightness quicker now and try to take a more proactive approach.

Teeth Grinding
At one dental appointment, I was asked if I was aware of my nighttime tooth grinding. I wasn't. The dentist showed me the places on my mouth which indicated some serious grinding. After he made me aware, I did catch myself sometimes grinding when I was just starting to wake up. I ended up getting a night guard made from my dentist, because clearly I had a problem. I'm not sure when it started, but I can tell you the grinding gets worse with the stress I feel during illnesses with Jaycee.

The night guard has helped, but I don't always remember to pack it when an emergent illness arises. There have been times in the hospital that I have woken up in pain from intense grinding and jaw clenching. This is a problem for Jaycee too. When we drive to the hospital, sit in the emergency room, or wait for a doctor, she will grind her teeth SO LOUDLY!! She does this during the day while awake, but my problem happens at night when I can't control it.



There you go. Now, you know how my body has responded to my child's chronic health issues. I often wonder if she hears beeps and alarms that aren't there. I wonder if she is having nightmares about the hospital we just left. I wonder if she gets aches and pains from tight muscles after being stressed in the hospital. If I am a by-stander in this story, I wonder what all is happening to her. Perhaps, one day she'll be able to verbalize it to me. Until then, we'll just continue on and hope that the next illness is a long way off.

Therapy Tip-Helping Your Child Understand/Pain Scales

Welcome to Therapy Thursday! This is the day that I share a tip based upon my experience as a pediatric speech-language pathologist and a mother of a child with special needs. Today's tip is truly based on my personal and professional experience:

Helping Your Child Understand Pain/ Using Pain Scales

Pain scales are nothing new. They have been used in the medical system for a long time. The series of faces ranging from neutral to crying to help patients describe their level of pain is often used in medical settings.

I liked the idea of using a pain scale with my daughter but I didn't like the common system or it's method. So, I came up with my own.

Background/The Problem:
My daughter has Down syndrome, a history of two different heart issues, obstructive sleep apnea, a lung cyst, and asthma. Her medical problems have far out-weighed her developmental ones. She has been admitted to the hospital over 20 times for illnesses alone. During these hospital admissions, chest x-rays, IVs (sometimes multiple ones at once), and blood draws are all routine. In addition, she has had numerous tests like sleep studies or swallow studies that have added to her medical experience.

All of these have led to one big issue with Jaycee. She has major anxiety related to anything medically related. I have tried to talk to her and let her know what is happening. Yet, she would fight, resist touching, hit, scream, cry, and kick when she felt threatened. When she was smaller, we could hold her down and fight our way through it. As she has gotten older, her anxiety has increased and our ability to just muddle through is not possible. 

I did not blame her for having her physical and emotional reactions. They were completely justified. The problem became clear to me. How can I help my minimally verbal child understand and differentiate between things that hurt and things that don't? A solution was needed because it got to where Jaycee was having a huge reaction to things that do not hurt like a chest x-ray or a dentist only looking in her mouth.

The Solution:

I decided I would make my own version of a pain scale for Jaycee. Since she uses a speech generating communication device, communicating in pictures is her normal, which means these should make sense to her.  

Front Side of the pain scale cards

Here are things I considered with Jaycee's pain scale:

-I did a scale of 0-5 to make it less complicated.

-I made a list of things that caused Jaycee to be upset or have meltdowns.

-I then assigned each problem area a rating.

-I then selected a picture that went with each pain rating.

-I made an individual card for each pain rating with the problems/meltdown areas on the back. This was to help me to stay consistent when I used them with Jaycee. For example, I didn't want to talk to her about getting an x-ray and describe it as a 0 one time and a 1 another time. I wanted this to be consistent.

Back Side of Jaycee's pain scale cards

-I decided that I would no longer lie to Jaycee about things that would hurt. If things hurt, I would tell her. If things did not hurt, then I would tell her. This way she could trust me and develop some understanding.
-The 0 pain was things that had no or minimal physical contact. This included: chest x-rays, wearing oxygen, getting hair cuts, and clipping nails.
-Getting IVs and blood draws were assigned the highest pain of 5. She absolutely hates these two things.
-On the pain scale 4 and 5, I wrote my verbal cues to her: Be calm. Hold mom's hand.

How I use these:
I always prepare Jaycee before a medical appointment or test by telling her what is going to happen. Now, I give the visual pain scale as an addition cue. I allow her to hold the particular card while she is in the waiting room as a reminder of the pain she can expect to have or not have.

The Result:
I have used these for about a year now at the dentist, before blood draws, and before seeing a doctor. It has not been a magic fix. It has not eliminated all her anxiety and related behaviors, but it is decreasing them. It is working.

If you have a child with comprehension or verbal issues, then I would strongly suggest you give this a try. It may take an hour or so to put it all together but it may be worth your time. With all visuals, consistent use is a key component to its success.

Therapy Thursday is for educational purposes only and not intended as therapeutic advice.

Why I Hate St. Louis (Nothing Personal, St Louis Citizens)

The list of things I hate is fairly short.

I hate birds that are within five feet of me, onions, dogs that insist I pet them, snakes, crowds, and St. Louis.

St. Louis, I actually love your impressive arch, your baseball team, your delicious Imo's pizza, and your malls.

But, I hate what St. Louis represents to me---health problems.

When my daughter was born in 2006, she was taken by a helicopter to a hospital in St. Louis. She was born with Down syndrome and an AV canal heart defect. She spent 10 days in the NICU there in St. Louis, 120 miles from my home. My husband and I stayed in St. Louis until Jaycee came home.

After she was released from the hospital, I made a few trips a month to St. Louis. In my exhaustive state of caring for a medically fragile newborn, these two hour trips to St. Louis to see a doctor for 30 minutes or so and then driving two hours home became miserable. I hated the traffic which doesn't exist in the small town I live in. I hated people honking at me when I didn't react with lightning speed at a green light. I hated being lost in this town where I couldn't just pull over and ask a friendly person for directions. The drive and the unfamiliar city just added to an already stressful situation.

In the past 10 years of raising Jaycee, I have made countless trips to St. Louis. The more trips I made to St. Louis the more familiar I became with traffic patterns and the areas around the hospital. As my comfort level of driving to and around St. Louis improved, the dread of going to St. Louis grew.

There were drives to St. Louis for my baby to undergo two separate heart surgeries. These drives were filled with trepidation as our lives were about to change for a time.

Then, there were the plain scary drives to St. Louis. In 2009, Jaycee had a hemorrhage after her tonsillectomy. Our local ER examined Jaycee and sent her home. But, the ENT that I spoke to at the St. Louis hospital requested we come in for observation overnight since Jaycee was at risk for more bleeding. My husband drove while I sat staring at Jaycee for the two hour drive watching for another bleed that thankfully never happened. But the stress of the original bleed on my 9 month pregnant body sent me into contractions. That was a drive that none of us enjoyed!

Then there was the frantic drive at 2 or 3 in the morning in 2009. Jaycee was being transferred from a local ER to the St. Louis hospital in an ambulance for respiratory issues. After Jaycee left in the ambulance, my mom and I started the drive over too. I remember eating a sausage biscuit on the way in an attempt to stay awake after an exhaustive day with Jaycee's breathing. I am not sure if it was exhaustion or stress but that was the best tasting sausage biscuit I ever ate.

One of the worst drives over to St. Louis happened in 2011. After Jaycee was put on a helicopter for a tachycardia caused by Wolff-Parkinson White syndrome, my husband and I drove over as fast as we could. We were warned by the doctors who loaded Jaycee on the stretcher that she might have more problems during the transport but they were prepared for them. Those words echoed in my head as I wondered what state we would find Jaycee in when we finally arrived at the hospital.

There were more trips to St. Louis transporting Jaycee for respiratory problems with our oxygen tank and oxygen saturation monitor in the van. These trips were stressful to say the least. If I told about every trip over to St. Louis that was frantic, this entry would be way too long.

At some point over the last 10 years, I started to hate driving to St. Louis. St. Louis became associated with stress, anxiety, bad news, scary times, unpredictable events, and doctors. I found myself griping the steering wheel so tightly as I drove to St. Louis that my hands hurt by the time I arrived at the hospital. The emergency drives had somehow caused my body to start reacting with stress even when the drive was just for an ordinary doctor's appointment.

I dreaded going there for any reason at all. Well, I still do. The Down syndrome organization that we are members of is based in St. Louis. Naturally, their events are also held in St. Louis. Each time, an event is announced I debate on whether or not I want to go because that would require me to drive to St. Louis. Sometimes, I sign up for an event and then can't get motivated to go to a town that has left me scarred as a parent. If someone suggests doing a fun activity in St. Louis, I usually decline for that same reason.

I tell this story not because I am proud of my bizarre dislike with St. Louis. I tell this story to show how medical issues and health emergencies can affect your thinking. It is almost like a post traumatic stress response that I have developed from years of being in a place that has given me scares and ugly emotions. Even when physical health issues improve or become stable, there are emotional and mental scars that remain.

For any of my fellow moms who have a place that they hate due to a negative memory, I feel for you. I pray that one day these places will just become another place on our map with no bad feelings attached to it.

Getting Free from Anxiety

My 7 year old daughter has had health issues for 7 years. Consequently, I have had inner struggles for 7 years. This has included depression, stress, fears, and anxiety. I've never seen a doctor for any of these but I know I have had them. I have had good times where I have had little or none of these inner struggles. And I have had rough patches where my work and everyday life have suffered. Sometimes, I was aware that I was struggling. Sometimes, I wasn't.

If you would have asked me six months ago, if I suffered from anxiety, I would have said no.  I would admit that I felt stress a little each day but I wasn't that bad. I didn't know how bad I was! The thought of taking both of the kids to McDonald's by myself was enough to get me anxious. (I realized later what I felt was anxiety.) I always had this faith-fear conflict. My fear said--Jaycee's going to run off. She might get away from you and get hurt. She's not going to listen to you and you're going to get frustrated.

Why did my fear say that? Because my negative experiences in the past left a lasting emotional impression on me. There's been times when I have simply let go of Jaycee's hand to get my keys and found myself chasing her through the a parking lot. It scared me. And I felt like a terrible mother.

But my faith said to be strong and not fear. I would be brave and decide to go to the store or a restaurant. I would feel good that I would be brave enough to go. Then that sneaky anxiety would pop up. As I would be driving or preparing to go somewhere I would think about the possible negative outcomes of this trip. I would get worried about Jaycee's safety and my ability to watch her close enough. My body would tense up. I'd be on edge. It's hard to explain this well enough to so that people can understand it.

Taking the kids out was just part of it. Jaycee's health scares was how it all started. There have been times that I have worried about her life ending. I have worried about her getting sick, being in the hospital, etc. Most people in my situation I think would be this way. When your kid has 2 open heart surgeries, 3 heart caths, strabismus surgery, 2 sets of tubes, 11 hospital admissions for illnesses -including 3 in the ICU, and several asthma attacks at home turning her blue, chaos and sickness become normal and almost expected.

At some point, even when Jaycee was healthy I couldn't enjoy it. I was convinced it was just a matter of time before something bad would happen again. I also became accustomed to life associated with sickness and life/death situations. It seemed odd to have a "normal" life where nothing critical happened. I didn't want her to be sick. I just didn't know how to deal with her sicknesses and then pick back up with my everyday life. There's so much to say about all of this and I don't want this post to take hours to read.

On New Year's Eve, as I was crying about something ignorant to my husband, I realized enough is enough. I have struggled with these things for 7 years. That is a long time...too long to live with so many fears and anxiety. I decided I would get help. A few months later, I found myself in a home getting 4 hours worth of prayer from people I trusted. Growing up in church, I firmly believed I could overcome all of my inner struggles through prayer and faith but I couldn't do it on my own.

The Bible says Jesus will be called Wonderful, Counselor, Mighty God, Everlasting Father, Prince of Peace (Isaiah 9:6). Jesus is the authority of peace. Peace is found in him. It is not found through calmness of circumstances. I believed that I could be happy if Jaycee was just healthy. But that wasn't true because I didn't feel better even when she was. It is a lie to believe that your peace can only come through resolution of your problems. Jesus is Peace. Therefore, true peace can be achieved no matter the circumstances.

By confessing some of my fears and getting encouragement spoke over me during prayer, I was able to get relief. Maybe I will get into the details of the prayer time in another post. But I will say that I have changed as a result of that prayer. About a week after the prayer, I could actually sit down and feel relaxed. It's been almost 2 months since I received spiritual help, I will say that today I am 80-90% better. I'm not perfect. I have wrong thought patterns established and I'm going to have to break the ones that are left. But I feel different. I took Jaycee somewhere the other day without worrying and obsessing about it first. I just went and actually enjoyed myself. It feels good to think positively again and not be bogged down with so much junk in my head. If you are having some of these same troubles, please find someone you trust and get help. Change is possible!