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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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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