Reflections Around the 16th Birthday

First off, it's been months since I have posted. I do write each month for Key Ministry, and that's often all I have time to write for lately. (Here's a post from January on their site if you missed it.) I do like to write when I am inspired or have something on mind. Lately, my thoughts have been centered around an upcoming milestone.

My daughter with Down syndrome will be turning 16 years old in a few weeks. I truly do not know where all this time has gone. I have a hard time accepting that Jaycee is getting older and not my "baby" anymore. She is closer to the age of adulthood than childhood. At the same time, her disability has her functioning at a much younger age. 

Jaycee needs light help with activities of daily living (i.e., showering, wiping, cutting up food). She still likes to watch Cocomelon and other shows geared toward young children. There is this strange dichotomy between her age and developmental level. There is a balance in seeing her grow up while acknowledging that she isn't like others her same age. At times, this difference is front and center. 

In the past year, I have scrolled through pictures and posts on Facebook featuring some of Jaycee's previous regular education peers. I have seen celebrations of getting a driver's permit and license. My sweet daughter is struggling to remember that a nickel is 5 cents and to read a simple sentence, so a driver's license is not even close to being a reality for her. I have also seen pictures of peers at school dances in fancy dresses. I made the choice to send Jaycee to a school that does not offer these opportunities. It's really not a big deal in the long run. For a moment, however, I consider 'what might have been' for my daughter. Her life, and mine, would be much different in an alternative reality where that extra chromosome was not present. 

I wonder what kind of teenager she would be like had things been different. Would she be interested in boys? Would Jaycee be athletic and part of school teams? Would she be a socialite or prefer to stay home? What kind of vehicle would she want to drive? Would she slam her door in my face in a heated exchange or roll her eyes at me? Would she want to spend time with me? 

I picture her wearing the pinkest dress she can find to school dances. Would she still like pink in this alternative reality? I picture her dancing without any reservations much like she does now surrounded by a group of friends. I imagine that on her birthday she would take her used compact car to the driver's license facility. She would be a ball of nerves, but she would pass her test. Later that day, she would take her first solo trip in her car while I sat in my living room tearfully thinking about how grownup she is. 

For some reason, this birthday has made my mind dream and reflect a little. That doesn't mean I am unhappy about our lives-simply curious. After all, our family is on a much different path than most.

This birthday still signifies much for us. We are using this age of 16 to recognize her growth and track towards as much independence as possible. In the last few weeks, we have made changes to her bedroom. The Beauty and the Beast wall stickers have been peeled off. When the live action version of that movie came out, Jaycee watched it at least 100 times. She absolutely loved the characters and songs. It's not her favorite show anymore, so her decor centered around the movie is being replaced with more teen friendly items. 

The big hair bows that she insisted on wearing at one time have been packed away too. She hasn't been wanting to wear them recently, and they are designed for young children. Now is a good time for them to part ways. 

There are other things that are being replaced or removed. So far Jaycee has not really cared about the changes, which probably means she was ready for them. 

As we talk about her upcoming birthday, she tells me she wants a "pink party dress." When looking at pictures of cakes, she gravitated toward layered cakes, mostly with pink hues and flower accents. She wants her cousins to help her celebrate her birthday. Jaycee is still a bit confused on when her actual birth date is, but we will make sure she does not miss it. 

Despite everything I have wrestled with lately, I have no doubt that Jaycee's birthday will be joyful. After all, this girl has survived two heart ablations, two open heart surgeries, and a dozen or so bouts of pneumonia. I prayed so many prayers to God that Jaycee would live through one health scare after another. There were days that I never thought we would see her turn 16 years old. So, her birthday- her life is cause to celebrate. We plan on celebrating with genuine smiles in a few weeks. I just hope to fine a pink party dress for her. 

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 3

Welcome to part 3 of a series highlighting how God speaks to people. As a Christian mother raising a child with special and medical needs, I have to hear God's voice. I need God's wisdom and encouragement to raise my daughter and serve my family well. 

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 has spoken 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. In previous posts, I have discussed how God speaks through dreams and other people. In this post, I'll share some ways that God has used things in the world to speak to me. 

Photo by Adam Kontor from Pexels

There are many examples in the Bible of God using things in the world to speak to people. After the flood, God put a rainbow in the sky to convey a promise. Moses saw a burning bush that wasn't consumed. It caught his attention, and then God spoke to him. When Saul ripped the robe of Samuel, Samuel had a message for Saul from God: “The Lord has torn the kingdom of Israel from you today and has given it to someone else—one who is better than you." (I Samuel 15:27) These are just some examples of things happening in nature or in real life that carried a deeper meaning. Here are three examples from my own life on this topic:

An Annoying Bird

In 2006, a bird was tormenting me. I suppose the first thing you need to know about me is that I dislike birds. For weeks, a cardinal bird was repeatedly banging into windows at my house. My displeasure for birds only made this situation more annoying. The internet suggested that the bird running into my window wasn't too uncommon. From what I read, it seemed the bird was seeing its own reflection in the window and, thinking it was another bird, was defending itself. The bird just didn't peck and run into one window. It seemed to follow me around the house. It would run into Jaycee's bedroom window for hours, my bedroom, the basement, or the kitchen. It drove me crazy. 

At the same time, Jaycee was just a few months old and getting ready for her first open heart surgery. I was dealing with a lot at that time. I was a few months in to adjusting to the news of Down syndrome and a heart defect. I was giving medications and bottles around-the-clock. I was exhausted and stressed, as anyone would be in my situation. I was also tormented in my thoughts, and I struggled with fear with the health situations we were facing as a family. 

I am a person who looks for signs of God in my everyday life. After a while, I wondered if the bird meant something deeper. It certainly tormented me-much like all the other stressors in my life. I have a Christian signs and symbols book I reference from time to time. I recall looking up the meaning of a cardinal and discovering it can represent Satan. It seemed like the perfect explanation of what was happening in my life. Much like that bird attacking my innocent house, I felt like I was being attacked (and my daughter) out of nowhere. I had never dealt with so much stress in my life. My mind was being battered with thoughts that didn't come from God. I know they weren't from God because they were full of fear, worry, and anxiety. I felt a parallel with the bird's persistence at my windows to Satan's persistence with my thoughts and faith. 

Interestingly enough, when we came home from the hospital from her heart surgery, the bird was suddenly gone. 

Smoke Signals

Probably somewhere around 10 years ago, I picked up Jaycee from my mom's house and headed home. As I left, I saw smoke in the distance. I live in a rural area where sometimes people burn brush piles or farm fields, so smoke is not uncommon. The smoke can be seen from miles and miles away. On this particular day, the smoke seemed to be in the direction of my grandma's house. I had a bunch of thoughts come to mind with concerns about my grandmother and the fire's location. I sped up as I made my way down the road that passed by her house. As I got closer, I realized I had clearly misjudged where the fire was. The fire was miles and miles away from grandma's house. She was safe, and my worries for her were unfounded. 

As I continued on my way home, God spoke to me about what I had observed. Smoke does not always mean danger and loss. Sometimes, fires are planned and controlled burns do good. Smoke can look threatening to outsiders far away but it may not be. In fact, sometimes the smoke is a large puff, high in the sky making one think the fire is a huge disaster, yet the fire is quite small and contained. 

At that stage of my life, Jaycee's medical diagnoses were causing me to freak out completely. I easily jumped to worst case scenarios in my head. The congestive heart failure, Down syndrome, open heart surgery, oxygen use, and other issues were weighing on me. I was worried about so many things. Any new issue that popped up felt gigantic and too much for me to process. I blew some symptoms or issues out of proportion. I worried about Jaycee passing away; it was a real threat in my mind. The fact that doctors are required to give you odds, risks, and chances of death in procedures most likely fueled that fire (so to speak). 

God used my reaction to that smoke as a way to recognize my own reactions and fears with Jaycee. Not everything that seems horrifically out of control is. Not every symptom or issue was uncontrollable or untreatable. Jaycee's conditions weren't necessarily an impending disaster. I was over-reacting and jumping to poor conclusions much like I did when I saw that smoke in the direction of my grandma's house. Ultimately, God wanted me to examine my thoughts, start taking some of them captive, and not let fear run my mind. 

A Re-Occurring Date

October 19th is a "sign" that I didn't see right away. In 2013, Jaycee survived a 4 week nightmare battling septic shock, ARDS, respiratory failure, pneumonia, and rhinovirus. She required a ventilator for 3 weeks and was touch-and-go a few times. It was a happy day when she was discharged from the hospital on October 19, 2013. 

A year later, Jaycee was baptized at our church on October 19th. This date just happened by chance; I didn't plan it at all. It wasn't until later that I realized her baptism and her discharge date were the same day. When I discovered the linkage, I felt like God was redeeming her life, especially after all she had been through medically.  

A few years later, I was standing in Jaycee's room gazing at the picture of her baptism. My eyes were drawn towards a memory box hanging on the wall too. The memory box had her newborn hospital bracelets and ultrasound that indicated that Jaycee would be a girl. For some reason, I noticed the date on the ultrasound. And there it was- October 19, 2005. 

I had to laugh when I saw the date. To me, it was a sign that God had many things lined up in our lives. There was an order in all of the chaos. The pictures on the wall were taken 9 years apart on the same day and brought me comfort knowing that God was working behind the scenes all along.  

There are dozens of other things I could share on this post, but I will leave it at this. I believe there are things that happen in this world that we can learn from and God can use to speak to us. I hope you are willing to stop, see them, and hear God. I hope you visit back for part 4 in this series. 

God Speaks-Special Needs Edition: Part 2

Welcome to part 2 of a series highlighting how God speaks to people. As a Christian mother raising a child with special and medical needs, I have to hear God's voice. I have to know his heart for me and my child.

I understand God wants to have relationship with people. He wants to speak to those he has created. The Bible tells us how God has spoken to people in the past. It also provides insight into how God communicates to people today. There are numerous examples to look at in the Bible. In part one, I shared about previous experiences with God speaking to me through dreams. In this post, I'll share some ways that God used other people to speak to me. 

Photo by Min An from Pexels

There are many examples in the Bible of God using the interactions between two people to accomplish something great. Eli told Hannah that God would grant her request (1 Samuel 1). He didn't even know what she was praying about, but those words eased her out of sorrow. God did grant her request just as Eli proclaimed. David and Jonathan were friends who worked together to take care of each other and encourage one another (1 Samuel 20). Paul's writings in the New Testament show how he communicated with other believers to help their relationship with God. Several prophets in the Bible spoke messages from God to people to encourage, warn, or direct them (i.e. Nathan in 2 Samuel, Elijah in 1 Kings, Jeremiah, Isaiah). 

For me, it has been imperative to have relationships with other Christians who can speak into my life from the depth of their knowledge about God. I do not have a long list of friends, but the Christian friends I do have know how to pray and speak words of encouragement. I don't know how many times I have been caring for Jaycee at home or in the hospital, and I get a phone call or text message at just the right moment. Sometimes, the text contains scriptures that relate to the situation, and sometimes it's just their own inspired words. Similarly, I have listened to a Christian podcast or a sermon at the perfect time to allow God to speak into my life regarding a situation with my child. 

A few specific examples

In July 2006, Jaycee was 4 months old. She was on oxygen from her first open heart surgery. At the time, I was a youth minister leading a church camp for our kids. The kids at the church knew some of Jaycee's health issues and had watched me take care of Jaycee during camp. During one of the evening services, several kids' hearts broke for Jaycee, and they wanted to pray for her. I brought Jaycee to the altar for them to pray. A sweet girl looked at me with tears in her eyes and said, "Just because she's sick doesn't mean God doesn't love her." 

You may think that statement was juvenile, but it meant the world to me. I was in the 4th month of struggling to process all of Jaycee's diagnoses and sudden turn of events. The shock of her diagnoses was the first real testing of my faith. That girl's words of revelation spoken aloud was exactly what I needed to hear. My daughter's health was not a barometer of God's love. 

In 2015, I was exhausted with Jaycee's medical scares and breathing issues/hospital admissions. Nights were horrible for me. I had several bad dreams, some of which were about the hospital. My body would become so tense during these dreams. By morning, I would wake up with parts of my body hurting so badly from being held tight all night. 

I decided I needed to have someone at church pray with me. That person shared with me ways to pray over myself. She encouraged me not to let these dreams become an open door for fear to breed. She also said, "Your body hasn't caught up with your spirit yet." That was a revelation for me. I hadn't thought about my spirit and body not synching up at the same time. 

Another time in 2015, I had someone pray for me after a serious ICU stay with Jaycee. I didn't know the person on the ministry team praying for me. She told me that I had an easy laugh. It was true. I laugh very easily. I tend to laugh when I am nervous, sad, upset, and happy. My husband and I try to find humor in all of our crazy situations -probably a coping mechanism. The ministry person said, "Laughter is your weapon. The devil thinks you have nothing to laugh about. Your laughter confuses him." I loved hearing this perspective, and I saw my laughter so differently after that interaction. It was even more meaningful because the Lord had clearly revealed that piece about my life to her. 

A dozen times, I have had people tell me that God considers me a strong person. They all add that I may not see myself as strong, but God does. This repeated message is just another sign that God is moving others to encourage me and build me up. 

Over and over again, God has used other people to speak to me. There are more examples than this, but I wanted to highlight just a few. I am grateful for those people who have felt God's nudging and were obedient to his voice. 

There is more coming to this series. Please check back for part 3. 

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! 

I Choose Her

A black and white checkered notebook on my end table contains much more than paper. The pages have heart felt prayers and concerns from 15 years ago. I was a new mom at home with a newborn with Down syndrome, congestive heart failure, and an AV canal heart defect. The diagnoses were a shock after she was born, and the notebook reflects a mom's heart that was muddled with fear and faith of the future. 

When I came home from the NICU with Jaycee, I literally brought home dozens and dozens of articles, pamphlets, books, and handouts. One book described what parents could expect with a Down syndrome diagnosis. Against the advice from other parents, I read the book cover to cover. It overwhelmed me, just as the other parents foretold that I would be if I consumed the book in that manner. 

The book guided my prayers early on. Everything in the book that scared me made its way onto my prayer list for Jaycee. Constipation, celiac disease, leukemia, thyroid disorders, atlantoaxial instability, intellectual disability, etc. were all things that I prayed through after reading the book. 

When I held Jaycee, who was dressed in the pinkest preemie sized clothing her grandparents could find, I had difficulty picturing her future. I was extremely fearful of the intellectual disability aspect. I wondered if she would be able to read or attend any type of regular education. I was afraid that she wouldn't be able to speak clearly. I prayed she would have a strong mind and learn things quickly. I prayed her abilities would be much more than her struggles. 

It's strange to look back over these prayers, thoughts, and hopes for the future. Some of the things I prayed about thankfully never became an issue with Jaycee. Other things I prayed about and feared, quite honestly, ended up happening. 

Her intellectual disability was far from mild, and she has needed multiple special supports in school. Simple addition is still hard, but we're grateful she can count to ten. She was nonverbal for several years before developing speech with multiple errors. After years interpreting signs, grunts, and gestures, we were thrilled with any attempt at a word she made. Hearing her voice was gift and knowing her thoughts a treasure. Her health was poor for many years, not from things predicted in the book, but from undiagnosed lung issues that Mayo Clinic finally discovered. 

At the start of my parenting journey with Down syndrome, I saw all the potential negatives and wondered how I could navigate them. I wanted it to be easy, for her or for myself-it's not entirely understood. Some of my fears have happened, yet it has been okay. Our family has walked through every success and challenge together. It hasn't always been easy; there are some hard days even now. Still, my daughter is my daughter. I love her fiercely. Her inability to add 3 + 5, read books past a second grade level, speak in clear sentences, or be independent with her daily care is our norm. As she has grown, we have adjusted to her needs. In the beginning, I was trying to come to terms with a lifetime of potential issues when I should have taken it one day at a time. 

There is a wisdom that comes from living this life out. In 2006, I only knew in part (1 Corinthians 13). The things I read or saw often created fear, but it didn't need to start off that way. It's hard to describe our lives in balanced way. It's even harder to communicate that to outsiders trying to lean in. 

Over the years, I have been invited to participate in a few online surveys about parenting a child with Down syndrome. More than once those surveys have contained the question: Would you take away your child's Down syndrome if you could? Yes  No  

On one such survey, I moved my curser back and forth from yes to no contemplating my answer. After much debate, my response instead was to exit out and forget the survey. That wasn't a yes or no question. How foolish of those investigators to consider that a fair question! That required an essay response. 

I know one important thing: I choose my daughter. Jaycee would be an entirely different person without her Down syndrome. I love the Jaycee I know. I would choose her a thousand times over. 

March 21 is World Down syndrome day. This is a day to celebrate and honor the lives of those with Down syndrome. Today, I reflect on how much I've grown as a parent, how strong our bond is, and how much love exists between Jaycee and our family. That stuff I worried about years ago seems foolish now. Yes, I understand where my head was at during that time, but I was focused on the issues and not the person with a God-breathed soul entrusted in my care. 

Yes, I choose Jaycee. The girl who loves nail polish, jewelry, and pink. She's usually sporting a big bow or a flower clipped in her hair. She drives me crazy with her youtube videos sometimes, but I have a depth of knowledge about the Ninja Kidz and Kidz Bop thanks to her. No one loves her cousins as much as she, and she always mentions them in her prayers. Jaycee is creative with nicknames she has dished out over the years, and the whole family ends up using them too. She's kind and gentle until it's time for a blood draw or a shot. Somedays she's thrilled to go to school, and other days I beg her to get on the bus. When she really enjoys a meal I cook, she hugs me and says "Thanks mom," before commanding her brother to hug me too. (He obliges.) Of course, I choose her. 

Turning 15 with Down syndrome

 “Birthday! Me?” Jaycee has asked the past few days.

She knows it is coming up since we have been talking about our plans recently.

“How old are you going to be, Jaycee?” I ask a few times a day to help her remember.

She pauses and waits for me to supply the answer in words and gestures. She mimics both in return.

This week, we will celebrate Jaycee’s 15^th birthday. She wants cookies and cream ice cream with chocolate fudge cake for her special treat. Hulk decorations will be placed in our house, and we will throw the best party we can in a near-blizzard condition.

Her birthday is always a time of reflection for me as well as appreciation for her accomplishments.

Jaycee is speaking more each year. When she wins at a game, she charges around the room saying, “Jaycee wins!” When she loses, she says “Oh crap!” Both reactions make us laugh.

We smile too when she says, “No thanks. I’ll pass,” which her brother taught her to say a few months ago.

When her younger brother started to become taller, Jaycee recently exclaimed, “Dang it!” Frustrated by the results of the head-to-head measurement, she got on her tiptoes to try to make up the difference. She’s a clever girl.

Jaycee wrote a song about one of her cousins. “Joel Butt. He’s the biggest butt in the world.” She sings it with a huge smile and laughter. It’s meant to be a song of endearment. The entire family knows the song. It’s a family joke to sing the song but replace the name with whoever is being annoying at the time. If we sing it about Jaycee, she says, “Hey!”

Her speech keeps progressing, but there are areas of struggle. When she’s ill, it is a mystery to me how she feels as I interpret her body language and behavior. Answering questions creates a large gap in our conversations. We try to give her questions that need only a yes or no response, but even that isn’t always reliable.

Jaycee is a YouTube fanatic. She loves Kidz Bop music videos and has memorized dance moves. At the same time, she enjoys watching Cocomelon and Disney Junior shows. Jaycee loves to watch Ninja Kids and will rewind parts she likes to watch over and over until we beg her to choose another video. If there is a young girl in a video, she says, “That’s me.” She also identifies other people in videos and claims they are her brother, cousin Joel, or cousin Gabby.

Shopping is an activity that Jaycee enjoys. She loves to shop for clothes and makeup. Jaycee also likes looking at baby dolls, Disney toys, Blippie items, and other things for younger children. Money and prices do not mean much to her. She loves opening up her purse to pay for items herself. She needs help making sense of her bills when checking out. If the total is too high, she will whine when I force her to hand over more money than she wants to part with at the time.

At home, Jaycee can do some chores under supervision. I appreciate her help when changing bed sheets. She loves to assist in the kitchen but doesn’t understand directions that need to be followed in a specific order. She can stir things well and put things in the dishwasher. Jaycee can pour her own drinks, which is a great step towards independence.

Despite her delays with Down syndrome, we see improvements in her each year. While other parents raising a child this age may be pondering future vehicle and college choices, we have had brief moments of apprehension when we try to look a few years down the road. We know support will be needed long-term, and we don’t know what that will look like exactly.

Still, we celebrate our daughter’s birth with much joy. Her life is a gift; she’s the daughter we always wanted. There are no regrets here. Only sincere wishes for a happy birthday and many, many more.

COVID, Down syndrome, & Our Experience

I'm still in a bit of shock over what has transpired in the past couple of weeks. My body is worn out. I haven't been sick, but I have been caring for those who have been. Our supply of nebulizer vials and ibuprofen is critically low. The amount of bleach, lysol, and disinfecting wipes I have used in the past week is quadruple my norm. It's been a wild few weeks, and I am grateful we are through the storm of COVID-19. 

During the pandemic, we have felt it was important to try to protect our teenage daughter, Jaycee. Jaycee has Down syndrome, a twice repaired heart defect, asthma, obstructive sleep apnea (treated with bi-pap since age 3), and other lung problems. She's been on a ventilator twice for a cold virus; any respiratory illness has historically been difficult to manage at home. 

With this in mind, we have always weighed risks for her- not just during the pandemic- but any time in her life. There is a delicate balance in keeping her safe and having a life. We have had to find this balance again and again as health issues or respiratory viruses have popped up. We don't want Jaycee to be sheltered at home for long periods of time, and we don't want to put her in harm's way, if it can be avoided. With COVID-19, there seemed more at stake when making these decisions compared to other health concerns in the past. 

We haven't exactly hidden ourselves away in the past 10 months, but we haven't thrown caution to the wind. We considered how we could do some things while minimizing Jaycee's risks. We taught Jaycee early on how to wear a mask, because she had necessary medical appointments in the spring of last year. We initially practiced short outings with her using her mask. It was a struggle at first, but eventually she tolerated the mask longer and longer. She's a pro with it now, but her drool doesn't always make it easy. I have always carried sanitizer with us but use it even more frequently during the pandemic. We used her wheelchair during outings so we could limit what she could touch and position her where we wanted her. We tried to lessen her risk; not keep her at home all the time. 

In August, she had the opportunity to attend school in-person. We felt it was important for her to attend. School is her social life, where she gets her therapies to treat her delays, and where her educational needs are met. School makes her happy; she was extremely unhappy and confused with remote learning. My son wanted to attend school in-person as well. By August, my husband and I were working outside of the home. We figured at some point, we would have a run in with the virus given that we were all going out almost daily. 

Out of nowhere, my son suddenly developed a cough one night in January. It came on so quickly that I didn't suspect anything serious. He's had many colds in his life, and this seemed like those. The next day, we took him for a COVID-19 test and paid for an additional rapid test fully expecting it would be negative. The positive result put me in a state of shock and the entire family in quarantine. We had unknowingly been around someone somewhere with COVID-19. We couldn't trace the virus, but sometimes that is the case. 

With the positive test, I found myself facing what I had feared for months. I had read some articles on the severity that could occur with Down syndrome and COVID. I also knew Jaycee's own medical history, which didn't give room for much optimism. However, Jaycee has been on a long healthy streak, and her body is stronger than its been in years. 

On day 2 of our quarantine, Jaycee woke up with loose stools. She constantly battles constipation, so I knew it was a bad sign. If she felt poorly prior, she had not made that known. I messaged a few of my strong Christian friends who gave me encouragement and calmed some of my fears. It was no surprise that Jaycee tested positive that day, as well as my husband who also developed symptoms. 

We contacted Jaycee's pulmonologist immediately. We started our "yellow" zone medicines and interventions (increased nebulizer treatments, cough assistance, airway clearance) on the first day of her symptoms as we tried to stay ahead of the problem. We were told to check if Jaycee qualified for the monoclonal antibody treatment in our state. With a quick google search, we found our state's guidelines and who they considered "at-risk." It appeared Jaycee qualified, but it took our local doctor to work out the details. 

On the 3rd day of her symptoms, Jaycee received the antibody infusion at our local hospital. The infusion was an outpatient procedure that took a little over an hour to run intravenously with an hour of monitoring afterwards. Jaycee handled the infusion well, and I took comfort knowing she had this treatment working in her favor. 

Knowing COVID-19 has a wide variety of symptoms, it was hard to predict what it would look like in Jaycee. I felt like I was sitting around and waiting to see if she stay on a mild course or get worse. I tried to fight off anxiety and stress. It all seemed to hit me at night, and I had great difficulty falling asleep and staying asleep. Part of me felt like I needed to watch Jaycee's pulse oximeter monitor all night because that is historically when she has her greatest difficulties. Ten months of hearing the worst COVID-19 stories were in my head making me feel like I needed to watch Jaycee all day and all night, which isn't humanly possibly. Her heart rate and oxygen saturation numbers bounced around more than usual at night, but nothing too alarming ever happened. 

With her verbal speech limited, I am not sure if Jaycee felt strange, achy, or lost her taste or smell. She rarely voices pain or anything of that sort. I could tell her voice sounded different for a few days. Her appetite didn't change at all. She ran low fevers of 99-100 for a few days. She often looked tired in the afternoon and evenings and slept 10-11 hours a night. A few days after her infusion, she developed a small cough. Her breathing had changed somewhat, noticeable to me because I have had to analyze it for years. But overall, the sudden decline or worsening respiratory symptoms I feared would come simply didn't. For that, I am so grateful. 

I adjusted her medications based off her oxygen saturation numbers and apneas tracked on her monitor. By the time her 10 days of quarantine were over, she was well enough to return to school (with clearance from the health department). I thank God that we were able to get her an early treatment and that Jaycee made a quick recovery. It really was an answered prayer. 

As for the rest of the family, we all faired pretty well too. My son had a few days of coughing and snot, and then quickly felt much better. My husband had a rough time having many symptoms at once. We carefully monitored his breathing for a few days before calling the doctor to get medications that seemed to slowly help. He isn't completely back to normal yet, but he's getting there. I felt I developed some minor symptoms after the rest of my family were positive. However, I tested negative not once but twice. It's a little perplexing as I obviously had a high exposure to the virus taking care of everyone in my home. As I write this, I'm left in quarantine while the rest of my family is out. I am tempted to complain about being in a long quarantine, but I have nothing to complain about. Our family is blessed that we all recovered and had no major complications. 

I share our story for other families who have a loved one with Down syndrome. Prior to talking to our pulmonologist, I had no idea that antibody treatments would be available for her. I want to make sure other families are aware that this may possibly be an option for your family member with Down syndrome or other health conditions. If your family has a run in with this virus, I hope you can have a good outcome too. 

One Word for 2021

At the beginning of a year, I often make goals or settle on a word to focus on in the coming months. In 2019, I felt God leading me to focus on the word "ASK." I wrote a post all about this word and what it meant to me. Essentially, I focused on "ask" because I had come to realize that my prayers weren't very deep. I had stopped asking God for things that actually required some faith. 

In 2019, I started asking God for more and stretching my faith. It had an amazing result and was the perfect word for me. 

This year, I really didn't have a word to focus on. I had some things I wanted to pray about and goals to achieve. Some of these included: keeping my weight off, praying for Jaycee to stay healthy, embracing turning 40 this year, and taking a family vacation. Thankfully, our family vacation was in February so we got to enjoy it! Keeping my weight off proved difficult in quarantine, but I kept the majority of my weight off. 

I don't have to begin to explain 2020 to any of you. It was challenging for a dozen reasons. I think "survival" was my word looking back- just kidding. I did learn much about myself in the chaos of 2020, and hopefully I will grow from it. I feel more prepared for challenges that I foresee coming in 2021. 

In 2021, I have one word that I will be using to guide me through the year. When Sandra Peoples, an author, speaker, and leader in the special-needs/Christian world, asked if anyone wanted to participate in an online conference and share their one word for 2021, I knew I had something to share. 

I will be one of 21 different people sharing their one word for the upcoming year. The conference is geared towards moms of children with special needs. However, many more people would benefit from the wisdom and truths that will be shared. 

The cost for the conference is $15, and you will have access to all the videos during the conference December 28- January1st. You can save $3 by entering my name in the promo code box! 

I hope you consider "attending" the online conference, setting yourself in a position to receive from God, and be encouraged to start 2021 off right! 

To sign up for the conference, CLICK HERE! Remember to use the promo code: Evana

Being Thankful, Even in All of This

This year, right?

I mean, this year has been a humdinger! Who would have predicted any of the craziness happening in the world right now? Eight months into this pandemic, I still cannot believe I am wearing a mask into a store to go grocery shopping. 

Nothing could have prepared me for the major changes in life this year. Change-there's a word I despise. I do not like change. I love routines and schedules, and I passed this trait down to my children. I remember when Elijah was in preschool and he asked me why I had called him to the dinner table at 4:58 and not 5:00. 

As a person who loves routine, 2020 has been challenging. My job suddenly shut down in March, which was a major change for me. Not to mention too that my income was less than I anticipated for months. Then, I was thrown into providing speech therapy via telehealth, something I never envisioned myself doing. Learning the rules and tricks to do telehealth was a huge change for me. On the other hand, going back to seeing children face-to-face for my sessions was a change I wholeheartedly welcomed. 

My husband faced changes too. He was expecting to spend most of the year working in Louisiana full time. He was sent home in April and never returned to the jobsite. He found other short term jobs to carry us through, but his work has not rebounded yet. Fortunately, he accepts change better than I. 

Of course, we have the other issues commonly faced this year. There have been mundane ones like finding toilet paper, figuring out what to do with our spare time at home, and completing school assignments with the children. Bigger problems have been figuring out health insurance options, budgeting with changing incomes, and extended family members testing positive for the virus. 

As we get closer to Thanksgiving, I can't help but reflect back on the things we have overcome this year, both big and small. In spite of everything, I have much to be thankful for. 

First and foremost, I am grateful for my daughter's good health. Jaycee is weeks away from an 18 month hospital-free streak. That's 18 months she hasn't been admitted to the hospital, fighting for breath, and giving us all a scare. Her treatment that Mayo Clinic started in May 2019 is still working wonders. In this time when there's much concern about germs, I am thankful for her health. 

My daughter has made other great achievements this year. Her writing has made vast improvements. She can write all of our names and other short words legibly- sometimes from memory! A few years ago, I decided that Jaycee may never write, and that was fine. I hadn't given up but just accepted the fact that it may not happen. Her progress in writing was a surprise. Her speech has made improvements as well. She is talking more and more. One day this week, she didn't want to go to school. She clearly said, "I don't want to," as my husband literally lifted her from the passenger seat. My son and I chuckled in disbelief over what she said. Progress is wonderful, and I'm thankful for every new skill!

When I did return to work (under a much different set of rules and circumstances) for a few months, I was grateful. When my job was pulled from my routine, I missed it. I find much satisfaction in helping families and their children. Seeing a child take their first steps or hearing a child's first words is really something magical. I never tire of these milestone achievements and cheer along side of the parents. My work is important, and I have never been so grateful to do something as simple as get up and go to my job. I won't be taking that for granted any time soon. 

There are other things I won't take for granted in the near future. Sending my children off to attend school in person is such a blessing these days. I'm grateful for the teachers, therapists, and staff working together to pull off school. I'm thankful when I can go inside a store and find everything on my grocery list. There were many shopping trips this year when it was hard to find everything. 

These and 100 other things are reasons I will be joyful on Thanksgiving. There are many adjectives that can be used to describe this year. For me, this year has given me the gift of perspective. The changes that happened during this year taught me much about myself. Some things were good, and some revelations were not. I am far from perfect; this year has taught me that like no other. I haven't liked everything that has happened in 2020. However, I can choose to be thankful this Thanksgiving. (Did I mention that my job is shut down suddenly again?) Even in all the changes, I can be thankful. 

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.