Friday, April 23, 2021

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! 
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Friday, March 19, 2021

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. 

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Tuesday, February 16, 2021

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 15th 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.

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Saturday, February 6, 2021

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. 

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Monday, November 30, 2020

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

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Sunday, November 22, 2020

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. 

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Thursday, October 29, 2020

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. 

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