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. 

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 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. 

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. 

A Year with Home Nursing

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Being "Mom" to My Daughter with Down syndrome

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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. 

Learning Over the Longest Summer Ever

The posts on this blog this summer have been few and spaced out. My computer hasn't been broken. I have simply been busy. 

I have been care giving since mid-March virtually nonstop. Remote learning for my kids took up all of our energy for the first few months. In May, I took off my temporary teacher, OT, and PT hats with great jubilation. I focused on being the mom (and sometimes nurse) again. 

In summers' past, I have spent three days working outside the home. Babysitters, my mom, and my sister-in-law all watched my kids while I was at work. Sometimes, the kids would be watched a few extra hours while I ran errands or spent time alone in the house to decompress. The kids enjoyed socializing with other people, swimming with their cousins, and being outside of the house. This year has been nothing like that. 

During this summer, I worked at home, and the work was much less than normal. My husband has been home the majority of this time too. We have shared the child-rearing during the day. There hasn't been much of a need for outside help. We have tried to keep our socializing circle small due to all the virus concerns given Jaycee's health issues. We have ventured outside of our home for shopping trips, camping, and a few other activities; we haven't locked ourselves away completely. For all of us, this summer has been much different.

All of the extra togetherness has allowed us to have the time, patience, and opportunities to teach Jaycee, our 14 year old daughter with Down syndrome and limited speech, new skills. I'm grateful for the things that have developed in Jaycee. Some of these are small things, but they are big things to us.

Here are some things that Jaycee has learned to do over this long summer:

1. Shucking corn.

My parents and brother all work together on the family farm. Sweet corn is one of those foods that we eat often while it is available. This summer, Jaycee was taught the quite useful skill of shucking corn. My family is most certainly proud. 

2. Write and read family names.

Jaycee loves to write names of people she loves. She has been writing mom, dad, and the names of a few other beloved people in her life prior to the shutdown. This summer, we have had time to practice other names. She can read all 7 names of her cousins now and can write some of them fairly well. The letter "S" sure is tricky for Jaycee, but it is getting better. I'm glad she enjoys this activity because it is certainly helpful for her fine motor. 

3. Use a vacuum.

Off and on over the years, Jaycee has unsuccessfully used a vacuum. She didn't have the stamina or muscle strength to push it. Now, Jaycee can help vacuum some of the rooms in the house before needing to rest. She doesn't yet understand the idea of how to vacuum an entire room without skipping a spot, but that will come with more practice. I am excited that both of my kids can vacuum their own rooms now! 

4. Make a bed. 

Jaycee has become my best helper when it is time to change bed sheets. Jaycee will take one side of the bed and I another one. We get those sheets and blankets off and on in no time. Pillow cases are giving Jaycee some trouble, so I generally do that. Jaycee places the pillows on the bed for me. We have a great system down. I love that she can help with this chore that goes much easier with an assistant. 

5. Use the brakes on her trike. 

Jaycee was gifted this trike last year. We live on top of a hill and on a road with no sidewalks. We aren't able to use the trike often. However, Jaycee got several opportunities to ride this summer and was pedaling her trike better than ever. It is hard for her to pedal, steer, and brake at the same time. We often walk (or run) next to her and help her steer or brake. Something clicked recently, and she started using her brakes by herself. This makes the trike riding much safer! She even steered the trike a few times on her own, which amazed us. I hope by next summer she is independent with the bike. Goals! (She likes to put her two favorite baby dolls in the basket for a ride too.)

6. Prepare strawberries. 

This summer I have discovered that both of my children love strawberries. Jaycee can now cut off the green stem, wash the strawberries, cut them up (in various sizes), sprinkle on the no calorie sugar, and stir it all up with minimal verbal instructions from me. I love to have her help in the kitchen, and I am thrilled to see her "make" something for the meal. 

7. Play new games. 

We have had numerous games nights at the house during the summer. Jaycee has always understood and enjoyed Candy Land and Sorry. Once she finds a favorite, it's hard to convince her to try something new. My mom discovered she loves Yahtzee. Jaycee shakes and rolls the dice like a champ. Someone keeps score for her and lets her know when she's done something good. She celebrates those successes. With some help, we've played many rounds of Skip-Bo, but card games are much harder for her to follow. The game of Life and Monopoly Jr. have also went over well. Whenever we tell Jaycee that she's won, she struts around the room saying, "Jaycee wins!" She demands we all congratulate her. I pretty much do the same thing when I win too! 

8. Fold laundry.

Jaycee has been hanging up her clothes and putting them away for some time now. This summer, I have taught both of my kids how to fold the laundry. Neither of them like it, but I make it clear that I don't like this never-ending task either! Jaycee is very good at folding washcloths, small towels, shorts, and underwear. For now, I'm sticking with the things she is good at because those happen to be the items I dislike folding the most. She's been introduced to the washer and dryer but it's a few too many steps to understand right now. 

Despite her disabilities, Jaycee continues to learn and make progress in life. Her gains may seem small, but anything that makes her more independent is a huge deal. 

I am grateful for this long summer and for the opportunities it has given. It is very easy for me to jump in and do things for Jaycee. It is often quicker and less frustrating in the moment, but it doesn't help in the long run. More time at home has given us ample opportunities to be patient with each other and have the repetition needed to learn a new skill. I am thankful that our long summer has allowed Jaycee to learn these things (and more not listed). 

A Year Without the Hospital

I'm working hard to change the way I think. 

Over the past few years, I have come to think of my daughter as a "mostly sick kid with times of health." The fact that my daughter, Jaycee, has been in the hospital 2-5 times a year for the past several years has contributed to that line of thinking. Besides the hospital admissions for pneumonia or respiratory infections, there were plenty of illnesses in which Jaycee was intensely treated at home. After years of challenges, I am happy to report that things are finally changing for the better. 

If you have been following this blog for awhile, you know the complexities of Jaycee's health. If you don't, this might be a good background read for you. The repeated respiratory infections have been devastating for Jaycee's quality of life, and it's been distressing for the rest of her family. That led to us taking Jaycee to Mayo Clinic for a third opinion on her lungs last year. 

By August 2019, Mayo Clinic had a plan in place for Jaycee's sick lungs after extensive testing. The main changes were:

-taking an antibiotic 3 times a week 

-adding in two new nebulizer medications to use daily

-increasing the settings on her vest airway clearance machine

-and obtaining a cough assist machine to be used daily.

In addition, we were given a different plan of attack whenever Jaycee did get a respiratory illness. It was more aggressive but necessary given the state of her lungs. 

Once we started her new intervention plan, I was cautiously optimistic. The team felt Jaycee would do well and promised a new, healthier future. I wasn't sure that it was even possible. I saw her has a "sick" child. I wanted the good health to be true, but it was hard to be believe things could be different. I had been promised good health before by other professionals. I had been let down in the past, so I was reluctant to simply trust that this plan would work. 

A few months into the new treatment plan, Jaycee's health seemed to be stable. Hope started to grow inside of me. Keep in mind that I had years of watching my child turn blue, be rushed to the ER, and suddenly need oxygen. These past experiences had me torn between believing for a better future and being scared that at any time things could fall apart. 

In the fall, Jaycee made it through an illness at home. It was an intense few days of treatments, but she recovered without going into the hospital. It was the reassurance that I was looking for. However, I kept saying, "Let's see if she gets through cold and flu season." That would be the real test. 

My reluctance was keeping me from believing better things for her. At church one Sunday, our pastor started encouraging us to pray for things that only God could change. He encouraged us to pray for the impossible, believe in miracles, and stretch our faith. I know this should be common knowledge as a Christian, but it's easy to let past hurts affect your prayer life. It was simply a challenge to pray in faith for areas that seemed like they were never going to get better. In that moment, I knew God was speaking to me through my pastor. It was the words I needed to hear. It was time to get beyond the traumas, fear of being let down again, and past experiences and simply cling to hope and faith that things could be better. 

In November, we rejoiced that we were able to celebrate Thanksgiving at home with our families. The previous two Thanksgivings were spent in the hospital. Being home for that holiday was surpassing a huge hurdle in my mind! 

December and January passed with no illnesses. Those were two months that were notoriously hard for Jaycee. I was grateful again that things were improving! The longer she went on her healthy streak, the more confident I became. 

In February, we all came down with a cold right as we headed out for a Disney vacation. Jaycee either got a mild version of our cold or had a small reaction to being in a different environment. Either way, the medications and machines did their job, and she was able to fight off her illness on vacation. 

Since then, Jaycee has been in near perfect health. She's had a few, small changes in her breathing this spring, which happens during allergy season, but her lungs quickly responded to the medications. If there's been any good to the COVID-19 stay-at-home orders that shut my state down for almost 2 months, it's that we went no where to get a germ or a cold virus. She has stayed remarkably healthy over the past few months. But, when there's no church, school, or social events, there's a better chance of staying well. 

Last month, I started counting down the days that would mark the 1 year anniversary of her last hospital admission. We marked the date with a prayer of thanksgiving and recognition of how much life has changed in the past year. I had zero faith that this was possible a year ago. It really feels like a miracle. 

Now that we've reached the one year mark, I feel it is time to consider my daughter as a "mostly healthy kid with times of illnesses." I'm starting to make this strange transition. It's been wonderful to view my child differently but also see how much better her quality of life can be. 

Having a year off from the hospital has meant that we have had a bit of reprieve from many things. There's less absences for illnesses, less time off of work for illnesses, fewer medical bills, less stress, and fewer disruptions in our life. I'm grateful for the way things worked out and for answered prayers. 

Still, an impossible question is in my mind. Can she make it two years without a hospital admission? We'll find out...

What I Lost as a Caregiver with School Ending

I didn't know that when I picked my children up from school in Illinois on March 16 that it would be the final time for the school year.

My son, Elijah, is finishing up fifth grade at our dining room table. My daughter, Jaycee, no longer attends her school for the disabled. She too is completing assignments at our dining room table. Along with her classroom work, we're trying to complete activities from her speech, occupational, and physical therapists at home. 

Like many other students, my children missed out on many end of the year activities. Fun things like field trips, spring break plans, and class parties didn't happen this year. My daughter wasn't able to compete in a couple of Special Olympics events. There was no transition for them. One day they were at school like normal; they next they were remote learning at home. Some days, it is easy and fun. Other days, school at home has been miserable and, quite simply, a chore. 

My kids weren't the only ones struggling with their new reality. I missed out on some important end of the year activities myself. Before the school year ends, I make sure I have all my dental, doctor, and hair appointments completed. Finding the time to do these things in the summer is harder when I have to consider who is going to look after my kids. Of course, this year I couldn't schedule appointments to make life easier later. Like everyone else, I'll wait and see when things reopen and hope I can find a time when someone can help me. 

Usually in March, I start mentally preparing for summer break. During the school year, I typically work Monday-Wednesday. That gives me Thursdays and Fridays to run errands, complete projects at home alone, clean the house, and simply have time to myself. Self-care is important for all mothers, but it is especially important for those like me. I love being Jaycee's mom, but I've been care giving for 14 years. Most parents can leave their 14 year old in the house alone while they mow or run an errand. I couldn't think about doing that with Jaycee. Most parents don't need to help their teenager in the shower, cut their meat up for them, or complete a few hours of medical interventions each day. This is my reality that I am more than fine with, but I do need to take care of myself to keep up with the caregiving demands.  

During the last couple of months of the school year, I typically spend time doing things I like while I have the ability to do so. I know for three months in the summer, my time alone is going to be almost nothing. Therefore, I try to schedule a massage in May as a way to relax. I grab a lunch at a local restaurant a few times, shop at Kohl's, and enjoy a movie at home in peace and quiet. In other words, I prepare for the three months of nonstop caregiving. 

This year, there was no time for preparation. The summer schedule of caregiving started in March. I had no time to decompress or relax. Things happened quickly and right in the middle of added stressors of job changes and home school. I know most other parents found themselves in a very similar situation too. 

School is much more than a place of academics for families like mine. School provides respite. It allows me time off from being a caregiver. It gives me freedom to do things like shop for groceries. (Pre-COVID-19, there were some grocery trips that go well with Jaycee. Other trips, I felt rushed and anxious when Jaycee's fatigue caused her to sit down on the germy floor each time I stopped to get an item.) 

Life is complicated right now for many people. Fortunately, there isn't much to do or many places to go right now in Illinois. Still, my caregiving is in full swing earlier than usual. I'm praying this fall we aren't in this same predicament for a number of reasons! 

I hope this post isn't taken as a complaint. It's simply an informative piece for those of you who don't have children with special or medical needs. You may not realize what school means to families like mine. School being abruptly closed provides challenges for my children and myself. We were all thrown into this situation without warning. So far, we are adjusting and carrying on. 

This morning, I watched my children have a lightsaber fight in full costumes. We were all smiling and laughing. Parts of this new schedule have been hard, but I think we'll be stronger at the end of it.