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?"

"No."

"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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