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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Wednesday, October 14, 2020

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.  
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Tuesday, October 6, 2020

When Your Family Gets Smaller

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

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

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

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

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

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

Ruth was the only grandparent I had left. I had regular visits with Ruth as a child, but I got to know her better as a teenager. She moved in with my parents when I was in high school. With her came an assortment of cow figures and collectibles; much of her life was spent on a dairy farm. Ruth introduced me to cross-stitching, and she was amazing on the sewing machine as well. Ruth and I had many conversations over the years as I finished college, got married, and had children. 
The last conversation I had with my grandmother was easy to remember, September 11. I was charged with the task of getting her to eat something for her evening meal while my parents were out for a few hours. When I arrived, she was sitting at her spot at the kitchen table. When I lived in this house, my spot was just left of hers. Ruth told me that she wasn't hungry and wanted that to be the end of it. 

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

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

"Do you want carrots?"


"Do you want a granola bar?"

"No," she said with a chuckle. 

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

"Nothing sounds good," she said.

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

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

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

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

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

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

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

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Monday, September 14, 2020

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. 

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Friday, August 14, 2020

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). 
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Tuesday, June 23, 2020

Scriptures and Prayers for Family in the ICU

Over the course of my child's life, I have been in the ICU over 10 times with her. Some of these ICU stays were planned after her heart or airway surgeries. Most of them were not planned and were the result of an illnesses suddenly attacking her body. 

The shortest amount of time my daughter has been in ICU was under 24 hours. The longest stay was 3 weeks. I don't know what it is like to be the sick person in the ICU. However, I understand what it is like to be the loved one sitting anxiously beside a hospital bed looking for signs of improvement. Yes, I am no stranger to the beeps, alarms, tests, machines, tubes, lines, pumps, doctors, and flurry of activity that is in the ICU. It is certainly no place that I want my child to be, and it has become a place that I associate with panic, stress, fear, and anxiety.

I've prayed many prayers in the ICU over my child. Some prayers were said out of desperation and fear of what I saw in front of me. Other prayers were full of faith and ended with the assurance that all would be well. I have said prayers that were long and powerful. Others were short and incoherent from exhaustion. Some prayers were simply, "Jesus help," because I couldn't think of anything else to say. I've come to realize that all of these prayers were all of value. 

In the middle of the chaos and crisis, I often make a decision to pray. The important thing is that I uttered words to God from my heart. I've discovered that prayer is powerful even if you don't have the "right" words to say. 

Today, I'm sharing some scriptures and short, sample prayers that I have said in the ICU over the years. However, I want to encourage you to simply pray from your heart. Whether it be long or short, eloquent or rambling, fear driven or faith inspired, let your prayer come out and share your thoughts with God. 

The Lord is my light and my salvation; whom shall I fear? The Lord is the strength of my life; of whom shall I be afraid? When the wicked came against me to eat up my flesh, my enemies and foes, They stumbled and fell. Though an army may encamp against me, My heart shall not fear; Though war may rise against me, in this I will be confident. Psalms 27:1-4 (NKJV)

God, I know your scripture says there is nothing to fear in You. You are the strength of life. You can provide life for my child. There is nothing to fear in the ICU because You are with me. Though I look around and see scary and disheartening things in the hospital, help me to not be in fear. Help my child, who may not understand everything that is happening, to have perfect peace. Let me be confident that you are here, fighting this battle with us, and will strengthen us all for this battle. Amen!

The thief does not come except to steal, and to kill, and to destroy. I have come that they may have life, and that they may have it more abundantly. John 10:10 (NKJV)

Lord, I know that sickness is not from you. I know that any threat to my child's health is not from you. You give life. You give it abundantly. I ask that You let life stir up inside of my daughter. Strengthen her body, mind, and soul. Let sickness leave; let health come. Give new life to her heart, lungs, and vital organs. I declare that my child has many long days of life ahead of her because she is your child. Thank you for healing my child and giving her life. Amen!

God is our refuge and strength, a very present help in trouble. Therefore we will not fear, even though the earth be removed, and though the mountains be carried into the midst of the sea; though its waters roar and be troubled, though the mountains shake with its swelling. Psalms 46:1-3 (NKJV)

I thank you, God, that you are a help in our troubles. In the ICU, there have been many troubles. There are things trying to destroy and to disrupt life. I thank you God that you are bigger than any of these things. Help me to not focus on the "big" things going wrong around my child. I pray that the discouragement be removed for me and my child. Let us walk through this knowing you are our helper, healer, provider, and can restore all. Your word says you are a very present help in trouble. Let my family know this today! Amen!
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Wednesday, June 10, 2020

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...
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Friday, May 8, 2020

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. 
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Thursday, April 23, 2020

How Life Has Somewhat Prepared Me for This

We are finishing up our 5th week of home isolation due to stay at home orders from COVID-19. Like millions of other people, nothing about my daily life looks like it did prior to this. Still, there are aspects of it that I can relate to from previous experiences.

Having a child with special and medical needs, I have endured situations that most people have not. My daughter has a list of diagnoses that have resulted in several surgeries and over thirty hospital admissions of varying lengths.

Today, I'll share three aspects of this crisis that I have been somewhat prepared for because of my life with my daughter.

1. Going Without Pay
Presently, my husband and I are both home and not working. (I'm working about 3 hours a week from home. Does that even count?) This is definitely an odd situation when neither of us have our regular income, but we've lived through other financial woes.

In the course of our 17 year marriage, we have had plenty of months when my husband was unemployed due to the nature of his job being seasonal. There have been a couple of times when I've went months without pay during a state budget crisis. We both have jobs in which there is no paid time off. That means every time one or both of us were in the hospital with my daughter over the years, income was not being earned. In 2013, we both spent an entire month at the hospital when she was fighting for her life. We both had no income for an entire month. These are just some of the examples that we have navigated together.

The rough financial times are trying. It's stressful to figure out how to pay the bills when the income isn't as much as usual. However, we have learned how to grocery shop on the cheaper side and make every dollar count. In addition, we know the importance of saving up in the better times for the shortages that happen during the harder times.

Don't get me wrong, we have had some struggles. I've went to the grocery store before with $30 trying to figure out what I could scrape together for meals. Sometimes, a lot of things hit at once (i.e. a car breaks down while you're unemployed and you receive an unexpected medical bill), and it can be simply overwhelming.

The main thing we have discovered in our times without our regular income is that somehow things always worked out for us. We give credit to God for helping us meet our needs. Did I mention prayer is a good thing to do? Going without our regular pay is never easy, but we've done it before. We can do it again during this COVID-19 crisis.

2. Plans that are Canceled
It is disappointing to cancel plans, especially when the decision is out of your hands. Due to my daughter's numerous illnesses, we have had to miss and cancel dozens and dozens of plans both big and small. Because of her health, we tend to hold our breath whenever we plan anything and hope we get to do it. It never gets easy. The disappointment is often met with tears and sadness.

In the past, we have canceled a family camping trip to Branson due to a hospital stay. I've missed school events for my son because my daughter's illness prevented me from attending. Our family has spent two Thanksgivings, a Father's Day, a birthday or two, and other minor holidays in the hospital. Those days looked nothing like we wanted, but the important thing was my daughter's recovery.

It stinks when your schedule has to be changed or plans seems up in the air. I know; I have been there multiple times. Still, I don't like it. Sometimes, I grieved over what we couldn't do, and that's okay. What I have figured out is that my perspective changes years later. The disappointment isn't as strong, and we have learned to make memories in the good times.

Today, I am reminding myself of these things as I am frustrated by the restrictions in life, my inability to plan, and my work changing. I try to tell myself that I won't always feel this way, and my family's safety is the most important thing.

3. Virus Anxiety
I have a healthy respect for viruses. I know what they can do to my child, and I know I need to avoid them if possible. Sometimes, my respect isn't healthy and I become very fearful. When your child has ended up on a ventilator from a common cold virus not once but twice, you end up being a bit fearful of germs. Germs are a real threat to my daughter's lungs.

That threat causes me to react differently when I know certain viruses are in our community. I find ways to avoid shaking hands with people at church. I don't take my daughter out to public places or grocery stores in an effort to decrease her risks. When we do go somewhere, we use hand sanitizer often. We may stay home for days or weeks, especially if my daughter is recovering from an illness. We adjust our lives to minimize the risks.

I'm really no more fearful of this virus than I am of any other virus. I understand the severity of this one, but all viruses are a threat to my daughter. However, I'm not use to hearing about a germ with such fear from the general population. I don't suppose most people have worried about a germ so much. Not me; this has been a normal part of my life for years. I have had to find balance though when trying live a life and minimizing our risks for my daughter. There does need to be balance, and decisions cannot be based upon fear. I've had years to sort this out!

Even though there are some aspects of this pandemic that are strangely familiar, there are plenty of things that are not. I won't pretend that I was prepared emotionally and mentally for this whole thing, because that wouldn't be true. I have struggled some days with my emotions and stress. It is reassuring to know that our family has ended up fine in any crisis we have lived through. That gives me hope for the future.

I pray this post gives you some sense of what families like mine go through multiple times a year. More importantly, when all this ends, I pray you'll remember people like us, understand our decisions, appreciate our struggles a little bit more, and reach out to offer help. Be safe!!
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Thursday, April 9, 2020

3 Things We are Doing to Adjust

We have had three full weeks at home on our new routine.

Like many of you, the COVID-19 pandemic has certainly brought many changes to our lives. My husband and I are both currently not working, which means we are home ALL of the time. That has been a major change for us. School is now taking place in our home. Social distancing and stay at home orders have meant we haven't seen our family or friends in weeks.

The first week at home went amazingly well. We weren't required to do school work that week, so we didn't. Instead, we had cooking lessons daily and some other life skills type of training (i.e laundry). We also played games, went for walks, and enjoyed our free time.

Then week two came. School work started, and the home isolation was beginning to affect all of us. Jaycee was extremely confused as to why she and her brother weren't attending school. Even though she's 14 years old, her minimal speech, Down syndrome, and Intellectual Disability make it difficult for her to understand changes and explanations. This wasn't a typical change to understand though; this situation had no reference point. It's a new situation for the whole world, not just my daughter. Therefore, it's hard to explain and harder still to understand what exactly she comprehends.

In short, there have been some wonderful days full of giggles and precious family time. However, there have been some difficult times. Jaycee has cried, yelled, refused to do something, put herself in bed (something she does when she is the most upset), asked to see her friends multiple times, and asked to go to church or school over and over. Perhaps, I should confess that I have struggled with my emotions as well. Most people have at some point!

For the most part, Jaycee has handled the many changes well considering everything. A change in her routine is difficult for her on a normal day. For example, when I take her to a specialist appointment and she misses school, I have to do some things to help her understand and prevent some behavioral reactions. For the past few weeks, I have asked her to adapt to multiple changes day after day.

There are some things I have been doing with Jaycee in order to help her understand. These are not magical solutions because some days have been hard. However, these are strategies that I know have helped her in the past.

1. The Checklist Schedule
The checklist schedule (pictured above) is something we use during summer break. Currently, I am using this checklist to name the major activities that need completed before Jaycee gets free time. She is able to read the list and check things off when completed. This old, familiar support has been used daily as she needs help understanding our days at home now. She reacts better to things when she knows what to expect, and this support greatly assists that need. 

2. A Daily Routine
Even though school is out, we have a set routine during the week. Both of my children thrive on routine. They get that from their momma! Our family has a new pandemic routine. I get Jaycee up around 7:30 if she isn't already awake. We start on her checklist items promptly at 8:30. We have lunch around noon followed by free time if her checklist is finished. Jaycee has a set bedtime as well. Each day, she video chats with a family member or two. The timing of that call varies depending on what she needs that day. A harder day means a call in the morning. 

We have some sort of a routine each day to help her cope and find stability. Some days are hard for me even as an adult, and it would be super easy for me to sleep in late and have multiple lazy days in a row. I know this would confuse Jaycee even more, so I press on. We play games, go for walks, make music, cook together, etc. We have made a routine for the time being. 

3. Social Stories
Thanks to Jaycee's school therapist, I found some helpful downloads online to use with Jaycee. We have been reading these social stories to Jaycee, which aim to explain the virus situation. Before we start our home school day, I read one of the stories to her. You can check these out too:

I found another resource which explains staying six feet apart and the use of masks on the Teachers Pay Teachers website.

These are the three ways that I am helping Jaycee adjust to the changes related to the virus. It can be expected that she may be confused and upset, but hopefully the supports are decreasing the chances. 

The pandemic has produced trying times for adults and children alike. We all need grace and patience to get through. I am grateful that we have been safe, but pray for those who have been affected by this awful virus. 
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Thursday, March 26, 2020

When a Loved One is on a Ventilator

In any form of media now, it is common to hear talk of ventilators with the COVID-19 pandemic happening. I have heard stories of COVID-19 patients needing ventilators, hospitals demanding more ventilators, and the race to make more to fill the demand. Ventilators aren't some foreign concept to me, and the frequent mention of them is giving me unpleasant flashbacks.

Perhaps, you have never seen a person on a ventilator. Maybe everything you know about ventilators was observed on Grey's Anatomy. I can tell you that, from my family's experience, nothing can prepare you for the reality of it.

Twice my daughter, Jaycee, has needed ventilator support for a common cold virus called the rhinovirus. Jaycee is medically complex and her multitude of lung and heart problems often result in her needing support in the hospital for illlnesses that others can fight off at home.

Back in 2013, Jaycee was admitted to the ICU for breathing difficulties and pneumonia related to that pesky virus. I remember everything about the night she was placed on a ventilator. She was rocking back and forth in bed, hyped up from multiple breathing treatments, when I implored her to go to sleep after settling into our hospital room around midnight. A few hours later, everything changed suddenly, and I was regretting that my last conversation with Jaycee was begging her to go to sleep.

Jaycee went into septic shock and was later diagnosed with ARDS. She went from needing some oxygen upon admission to needing the ventilator quickly. For 3 weeks, I watched my 7-year-old child breathe with a ventilator.

In 2015, the rhinovirus again created havoc in her lungs and a less sudden need for a ventilator occurred. For a week or so, I sat beside my 9-year-old daughter listening to the hum of the machine breathe in and out for Jaycee.

I am not an expert on ventilators, but I will tell you about what I observed as the mother of a patient from these two events.

I was not prepared for everything that came with the ventilator. Jaycee was sedated while she was intubated. One reason for the sedation was that it prevented her from trying to pull out her breathing tube. With her sedated, we found ourselves in a weird mode where she was there but not really there. We talked to her, reassured her, played music, played her favorite tv shows, and held her hand when she was stable, but it was hard to know what she understood, processed, or heard. Tubes did all of the major work of her body while she slept. There were tubes and wires everywhere! It was a sight that was hard to take in and see.

Then there was the noise from the ventilator. It set me on edge all day and night long. The ventilator wasn't a quiet machine that's portrayed on television. It's noisy. It had a constant hum as it inhaled and exhaled for Jaycee. It alarmed frequently for a few different reasons. If she coughed, I jumped at the alarm it produced. Coughing also typically meant she needed to be suctioned. I hated the sound of the suction and the cough that happened as a result. It makes me cringe thinking about it now. Perhaps, it wouldn't bother anyone else, but it was something that I hated hearing and watching. 

The idea of Jaycee being on a ventilator was simply scary too. In other illnesses, Jaycee had been on oxygen, high-flow nasal cannula, and c-pap support for oxygenation needs. The ventilator is the final stop on the oxygen train. To me, it was worrisome that there was nothing left after the ventilator. In the 2013 event, Jaycee was on the highest support on the ventilator and not sustaining good numbers at different points. Other things were eventually tried (like positioning her on her belly, adding nitric oxide, etc.) which eventually led to improvements. It's scary to see someone struggle to breathe and know that there's nothing else that can be done. 

As for Jaycee, I don't know what the experience was like for her. With her limited communication skills, I don't know what she was feeling or thinking during those times or what she remembers. I know there were moments of discomfort and sadness judging from her body language and tears. 

For her sake, I hope she doesn't remember any of it. I hate to go back to those memories. They aren't pleasant. With all the talk of ventilators lately, I have found myself revisiting some of those memories. I feel for all the people needing them right now and their families. It's not an easy thing to live through. 

There are many opinions out there right now regarding what the public can do to stop the spread of COVID-19. I don't know what you should do, but I know without a doubt what I should do. I never want to see anyone I love on a ventilator again. Therefore, if there are some things I can do to put the odds in our favor, I will gladly do them. 

Be safe out there!
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Saturday, March 21, 2020

21 Things I Love about My Daughter with Trisomy 21

It's March 21st! Happy World Down syndrome Day!

The date 3/21 is World Down syndrome day (WDSD) because it represents the 3 copies of the 21st chromosome that people with Down syndrome have. WDSD matters to me because I love someone with Down syndrome.

Fourteen years ago, I feared Down syndrome and everything it would mean for my daughter, Jaycee, and our family. I felt lost the first couple of years as I processed her diagnosis. I wasted time figuring out how Down syndrome would affect Jaycee. All I really needed to do was simply see her. Jaycee was my daughter. The Down syndrome faded into the background where it should have been all along.

Jaycee is a unique individual who happens to have Down syndrome. She is full of personality, and she gives me reasons to smile daily.

If you haven't had the pleasure of meeting my daughter, then let me tell you some things about her that I absolutely love.

1. She puts things on her head for a laugh. My cup, phone, Bible, and tv remote have all been on her head. Jaycee says, "On my head," as she does it, and then she waits for me to pretend to be mad. I don't know why she started doing this, but it's funny. 

2. "Butt" is her favorite word. It is one of the clearest words she says too. There's worse things to say. 

3. She gives out nicknames that stick. Some of these include: Deer, Daddy Beast, Joel Butt (see number 2), Bubba baby. When I'm mad, everyone refers to me as a mad hippo because of her. 

4. Jaycee has become a savvy clothes shopper. She previously hated shopping in any form. Now, I can't shop for clothes without purchasing something for her. She loves to shop! 

5. Jaycee knows how to use her tone of voice to say 'mom' in a frustrated way. It's funny the things she gets annoyed with that cause this tone to come from her. If I drop something in another room, she will yell out, "Mom!" If I sneeze or trip or make any mistake, she catches it and yells, "Mom!" 

6. She has a "princess pose" for pictures. The pose consists of one hand on her hip and one hand behind her head. 

7. Her memory for some things is completely amazing. She recalls being in certain resturants with people months later. I don't know why or how these memories stay, but they do. 

8. Jaycee has a specific way she wants her hair. Right now, she likes to have a pony tail with a JoJo bow. Her second favorite look is a flower clip in her hair. 

9. Jaycee loves the band Skillet. She hands me the ipod in my van and asks for "illet."

10. She loves Baby Shark too. Skillet and Baby Shark are both pretty important even if they are opposites. These interests show that she has age appropriate ones as well as some developmentally lower interests. 

11. She loves make-up. This developed all on her own, since I don't wear it. She owns more lip gloss, eye shadow, and make-up brushes than I ever have. 

12. Even when things are hard, she carries on. Hospital stays, increases in medications, surgeries, or times of being home bound, she powers through them all. She may have some fears and short periods of sadness, but Jaycee goes through adverse situations like a true champion. 

13. She says the sweetest prayers. Jaycee utters out a mixture of babbles and real words to talk to God every day. She prays for some of her favorite people in these prayers. I feel honored when I am mentioned.  

14. She cares about her friends. She asks about them and is concerned about them if they get hurt. 

15. Jaycee loves to video chat with family and friends. With her limited speech, video chatting is important for the listener to see her gestures and signs. 
16. A few years ago, Jaycee decided she wanted to wear dresses to church. Nearly every Sunday, Jaycee insists on wearing a dress to church. 

17. Jaycee is fearless about amusement rides. While I scream on a coaster, she is all smiles and laughs. Because of her heart condition, she hasn't done the big coasters, but I am sure she would enjoy them if given the opportunity. 

18. Jaycee loves to rub on my fingernails. She takes her hand and gently grazes her fingers across the edge of my fingernails. She has done this since she was a toddler. 

19. My daughter loves to sing. Most people can't make out any of the words that she is saying, but I love to hear her sing. A few years ago, Jaycee was silent, so her singing is such a gift. 

20. Jaycee thrives on routine. This can be good and bad. Honestly speaking, I thrive on routines as well. She gets this trait from her mom. 

21. She loves like no one I know. Seriously, she is the most loving and accepting person. Her loving nature challenges me to do better. I am grateful that I get to be around her love everyday. There are plenty of hugs and kisses in our home. 

On World Down syndrome day, I celebrate my daughter, her life, and the wonderful person that she is. I hope her Down syndrome fades away for other people too, and they can see her. 

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Monday, March 9, 2020

Things I Don't Know about my Daughter

I recently returned home from a lovely 10-day vacation with my family and parents. We had a wonderful time in Florida and enjoyed spending time together.

During one of our meals at a restaurant, there was a heated discussion about bacon. Bacon is pretty important, especially if you are doing the Keto diet.

I like my bacon thoroughly cooked. My husband says I eat it burnt, but I disagree. I don't like it blackened, but I do like it hard and crunchy. On the other hand, my husband eats it chewy and soft. I  struggle to cook bacon for him as I feel I am serving it to him partially raw. He hates "overcooking" the bacon for me. This is one of the many trials of our marriage.

During our discussion on the proper way to eat and cook bacon, my son chimed in regarding his preference. It appears he likes bacon cooked somewhere between my husband and I's crispness.

Then it hit me. I have no idea how Jaycee, my 14 year with Down syndrome and language delays, likes her bacon. Jaycee is a great eater, so she will eat bacon nearly any way it is presented. Yet, I wonder what her preference is. I cook her bacon the way I like it, but maybe she hates it that way. It's hard to know exactly her thoughts on this important subject.

On the last night of our vacation, there was another conversation where Jaycee's contribution was missing. We reflected on all of highs of our trip and debated about which Disney park provided the most enjoyment. We talked about the different rides that were our favorites. Jaycee, with her limited speech, listened to us and smiled.

I asked Jaycee what her favorite part of the vacation was. Her response was, "Gabby."

Her answer didn't make sense because Gabby is her cousin who wasn't even on our trip. Questions are generally hard for Jaycee to comprehend and answer. She does better with questions that require a yes/no response or questions that contain specific choices. I tried that tactic with her but still got no good answer.

I don't know what her favorite part of the vacation was. Who knows if it was meeting the princesses, walking on the beach, or riding coasters? She seemed pretty excited to meet Gaston and has watched the video of their meeting a few times. Was that her favorite part?

Despite these unknowns, there are plenty of things I do know about Jaycee. She shows me her preferences by her actions, behaviors, and words/signs. She asks to call her cousin Gabby like any other teenager. When I gave her some options for her birthday lunch, she answered "spaghetti" consistently. She tells me if she wants to go home or if she doesn't want to go to school. We can talk to each other about many subjects.

I'm thankful for the things she can communicate. I appreciate what we do have in this life. Sometimes, I do wish there was more. There are things missing from our conversations, and certain times (like vacations) remind me of the gaps. Perhaps one day, the gaps will be fewer and fewer.

Maybe in the future Jaycee will pick up her perfectly cooked, nearly burnt bacon and tell me it's horrible. That would be a really amazing day!
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Tuesday, February 4, 2020

The Art of a One-Sided Conversation

I have been monopolizing conversations with my daughter for years. I'm not rude. It is done out of necessity. At age 13, Jaycee is saying more and more words. Still, we can't have full conversations that most mothers and daughters do.

For a good 8 years, Jaycee was nonverbal. During those years, Jaycee communicated with a few words, sign language, and a communication device. During that time of her life, our conversations after school were something like:

Me: Did you like school today?

Jaycee signs: School

Me: Was it fun?

Jaycee: Grunts happily (I interpret as yes.)

Me: I missed you while you were at school. Mommy had to work.

Jaycee signs: Work

Me: We're going to go home and make dinner.

Jaycee signs: Home. Eat.

Jaycee signs: Pizza

Me: No, we aren't having pizza tonight.

There were few questions Jaycee could answer back then. There were no stories she could offer on her own. Getting information from her was next to impossible. Jaycee often repeated back words she heard me say. She wasn't able to express many things out of the blue. If she did, I struggled to understand what she was talking about.

There is an art to having conversations with a child who doesn't respond with many words. You have to know ways to keep the conversation going when words are few from your communication partner. It is possible to converse, but there's not much depth. 

Progress is a wonderful thing. Now, I can have better conversations with Jaycee though they are still mainly one-sided. A typical after school conversation is now:

Me: Was school good or bad today?

Jaycee says: Good (She also gives a thumbs up.)

Me: Who did you play with at school?

Jaycee says: Hope, Mikayla

Me: I'm glad you got to see your friends.

Jaycee says and signs: School. Friends.

Jaycee says: Bubba?

Me: We're going to the pharmacy first. Then, we'll pick your brother up from school.

Jaycee says: Uh-uh (as in no). Bubba!

Me: He's still in school. We have time to go to the pharmacy first.

Jaycee says and signs: Bubba. Home.

Me: First, we'll go to the pharmacy. Then we will get bubby. Then we'll go home. (I hold up a finger as I say each item, so she knows we are doing 3 things.)

Jaycee: Imitates holding up three fingers and babbles in an attempt to repeat what I said.

This is how we converse now. It's not the typical exchange for most teens with their moms, but it's our way. I am happy she can speak more now and not be so reliant on gestures or sign language. I'm thrilled she contributes her own thoughts to our conversations. Our talks aren't completely one-sided now.

When Jaycee was little, I wanted nothing more than to talk with her. I wanted to know what she is thinking and what happened during her day. Even now, I still want these things. However, I am grateful for the progress she's made. I'm happy to get glimpses into her thoughts.

I am also extremely grateful that there are several people in her life that know how to speak to her too. Grandma, cousin Gabby, Aunt Steph, and a host of other people have also mastered the art of the one-sided conversation. Jaycee has opportunities to converse with other people besides me. I'm grateful these people have figured out what questions to ask her and know how to pull information from Jaycee.

After all, Jaycee does have something to say. She doesn't need 30 minutes of non-stop talking like so many of us do. Sometimes, a short sentence and a big, firm hug can speak volumes.

Maybe one day Jaycee will be monopolizing our conversations. I would be thrilled to have that experience!

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Monday, January 27, 2020

Language Delays, Church Inclusion, & Information You Need

Picture this:

There's a young boy with an Intellectual Disability sitting in a children's church. He only says a few words. The teacher at church wonders how he can participate more while he is in class.

There's a young teen with Down syndrome who is very social and enjoys church. The teen is verbal but struggles to understand and answer questions. The teacher at church wants to make sure the teen is understanding their lessons to encourage spiritual growth but isn't sure what to do differently.

While the other children in Sunday school sing in worship, there's a student with little verbal speech standing quietly. The church volunteer would like to see the student participate in worship, but she doesn't know how to encourage participation.

It is a beautiful thing to see people with disabilities attend church. Much like in a school setting, churches often need to make accommodations to make sure these members can learn, participate, and grow in their faith just like anyone else.

At a couple of different ministry conferences last year, I presented a workshop called "Supporting and Teaching Children who are Language Delayed, Minimally Verbal, or Nonverbal." As a pediatric speech-language pathologist and the mother of a child with minimally verbal speech, I was excited to share some ideas and knowledge I have collected over the years.

After my presentation at the Inclusion Fusion Live conference in Cleveland, Ohio, I wrote a few posts for Key Ministry highlighting portions of my presentation. These include:

Tips for Starting Sign Language in Your Special Needs Ministry

How to Develop Prayer in Children with Little Speech

How to Help Those with ID/DD Understand Baptism

On April 24 & 25, 2020, I'll be back at Inclusion Fusion Live. This conference is perfect for ministry leaders, families, and those caring for individuals with disabilities. My topic this year will be "30 Ways to Include the Person with Severe Language Delays." The title sort of sums up my talk, but I'll be sharing ways we can include people with more severe language delays at church during prayer, worship, lessons, fun & games, etc.

As a bonus for reading this today, I'll share with you two of those ways to include those with severe language delays that will be further discussed in April.

#1. Consider having live music for your students. 
A guitarist or pianist is an excellent addition to your worship time (as opposed to CDs or videos) because the musician can adjust the tempo of the music to better fit your students' needs. People who are minimally verbal or struggle to put sentences together can benefit from music played at a slower pace. Individuals with Intellectual Disabilities may process information slower and therefore benefit from a slower tempo. 

If you think finding a musician may be difficult, think outside the box. In our church's special needs class, my 10 year old son plays his guitar a few Sundays a month. He isn't the perfect guitarist since he's young. However, the kids look past his mistakes and enjoy his music. His acoustic guitar isn't too loud, so even those with sensory processing disorder have enjoyed it. He's adjusted the songs so that we sing them slowly. This has allowed singing to occur for the students who were struggling to sing along to videos.

Live music allows you to sing a song a few times in a row. Repetition is helpful for those who need more time to process or learn the words. A musician can also play choruses of songs and omit verses that have verbiage that may be too hard for our students. In short, you can customize your worship to fit the needs of those in your class.

#2. Compile a list of conversation starters for the volunteers. 

Sometimes, the most seasoned volunteer just doesn't know how to begin a conversation with a child who is nonverbal or minimally verbal. At our church, we have a communication chart for volunteers to reference. It lists some things the child is interested in so that volunteers can start conversations and find common ground. For my daughter, Beauty and the Beast, Disney Princesses, pizza, and her cousin Gabby are all listed. Even though she can't have full conversations, a new volunteer can make comments that can connect with the her interest. ("You're coloring with yellow. Princess Belle wears a pretty yellow dress.") 

You may be wondering how to gather this information. When a new student attends our special needs ministry class for the first time, we have a one page paper of various questions to ask parents in order to know how to best support their child. One of the questions is about the student's interests. This is a great thing to know for reward systems and to understand what topics a child may enjoy talking about. Some children may not be able to respond to general questions ("What video games do you like to play?"). But, by making a comment or asking a simple yes/no question about an interest, we may have better success at connecting with the child ("My son loves Minecraft. I like the chickens on it. Do you like the chickens on Minecraft?"). If I know a child likes animals, I may pull up a picture of my cat to show them and start a conversation. Getting the information from the caregivers takes the guess work out for the volunteers. 

At the conference, I'll be giving about 30 more of these tips for churches to foster inclusion of those who are nonverbal, minimally verbal, or language delayed. I really hope to see you there in April!

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