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!
 
Related posts:

submit to reddit

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...
submit to reddit

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. 
submit to reddit

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!!
submit to reddit

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. 
submit to reddit

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!
submit to reddit

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. 


submit to reddit

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!
submit to reddit

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!

submit to reddit

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!


submit to reddit

Monday, January 6, 2020

2019: The Year I Prayed Differently

Happy 2020!

Like many people, I tend to reflect about where I've been and where I am going when a new year begins. I usually make a mental to do list for the upcoming year that seems attainable. In the past, some of items on my list were: take a vacation, deep clean my house, grow closer to God, make an effort to reach out to others, etc. 

Last year, I felt compelled to do something different. Rather than having a task to complete, I had a "word" to focus on. "Ask" became my focal point in 2019. 

You may feel like 'ask' is a strange selection for a word, but I knew exactly what I was being challenged to do when I got the idea through prayer. First, you have to understand what happened the previous year that preempted everything. 

In 2018, Jaycee, my daughter with Down syndrome and other medical conditions, was in the hospital five times for respiratory issues. The hospital admissions were hard and the recovery at home long. It was a draining year. It wasn't the first year that she was hospitalized so often, which only exacerbated the feelings of stress and anxiousness over her health. 

During 2018, my prayers for Jaycee were mainly, "God, please keep Jaycee from getting sick." Sicknesses like colds or influenza were major threats to Jaycee's lungs. If she could keep the germs at bay, then she would be fine. My prayers reflected that line of thinking. If God could protect her from getting the germs, all would be fine. Once Jaycee became sick, I felt there was little hope that her lungs could fight anything off. Caring for someone with chronic health conditions can lead to that type of thinking, especially when you have consecutive months of health trials. 

My faith was only strong when Jaycee was healthy. I had seen Jaycee in respiratory distress too many times over the span of a decade. It made me fearful and shook any sliver of faith I had when she was ill. We had exhausted all the pulmonary tests and treatments (or so we were told by two hospitals at the time). 

When Jaycee was symptomatic, I spent little time in prayer. You may think that odd, but I was busy. I was managing multiple medications and treatments, calling doctors, and trying to stay on top of her care. I didn't ask God for much help during these trials; I simply lacked the faith or the energy. 

On January 1st, 2019, I prayed something different. I asked God to make Jaycee healthy (as opposed to not getting sick). I must admit, I had trouble even saying the words at first. My thoughts told me it was a crazy thing to even say. It seemed like it would be an absolute miracle for Jaycee to be healthy- without sickness- without hospitals. I prayed her lungs would be healthy. I wrote out a little page and stuck in on my bathroom vanity as a way to keep focused. 


On January 25, 2019, we rushed Jaycee to an emergency room as she suddenly turned blue. Jaycee was discharged after a few days, a relatively short amount of time in the hospital for her. We continued to intensely care for her at home. However, a couple of days later, Jaycee needed to be rushed to the ER again. She had developed pneumonia from RSV, which wasn't caught at the first hospital. (Yes, 12 year olds with crummy lungs can end up with serious repercussions from RSV too!)

Did I want to stop asking for her to be in good health? Yes and no. I knew I would face opposition by praying this way simply by knowing Jaycee's health history. I wish I would have had at least one full month to pray peacefully and develop some faith before the obstacles. However, I knew I needed to go forward. I knew I needed to stretch my faith and speak life over her lungs, now more than ever. I made an effort to pray for her when she was sick instead of going into full "mommy-nurse" mode.

RSV has a long recovery time. By mid-February, Jaycee had more sick days than healthy. Yet, I chose to keep asking on Jaycee's behalf. The more I said it, the easier it became. It also helped me develop faith and look long term for her rather than the current crisis.

The year of asking and having faith for Jaycee started out rocky. She would be hospitalized once again in May. There were a few other illnesses too when Jaycee endured several days of interventions at home. There was no magical end to her health problems. But, a few things happened in 2019 that were game-changers. 

I asked one of Jaycee's specialists about enrolling her in outpatient physical therapy in the spring after she fully recovered from RSV. Low muscle tone is part of Down syndrome and every illness seemed to make Jaycee weaker. I didn't realize just how poor Jaycee's endurance had gotten because it happened slowly over time. I became accustomed to using the wheelchair for most public outings. I accepted the fact that she couldn't lift her legs for more than 30 seconds to shave. After a few weeks of therapy, there were noticeable changes in her. It didn't change her lung status, but it made a huge difference in other aspects of her life.  

In 2019, we made three trips to Mayo Clinic where Jaycee's lungs were extensively tested by them for the first time. As a result, new treatments were added as well as new diagnoses. In some ways, I struggled after our second Mayo Clinic trip in late July. Knowing exactly what was wrong with Jaycee's lungs was frightening. She was prone to pneumonia and we knew why. The best thing for Jaycee's lungs would be for her to have long stretches of health to give them time to heal. It seemed like an impossible task. I was hopeful for the new treatments but also fearful from the information we learned. I continued to pray for her health, but it was harder knowing the condition her lungs. 

In September, I listened during the pre-service prayer to my pastor who challenged us to pray for supernatural miracles. He asked, "Are we praying baby prayers that require no faith or miraculous prayers that only God could answer?" As he spoke, the worship team sang, "Great are You Lord." The lyrics to this song often run through my head during a health crisis: It's your breath in our lungs, so we pour out our praise. The combination of these things happening were a sign to me. Don't fear the future. Continue to ask for Jaycee's health. Step out, be vulnerable, and ask. 

Much can happen in the course of a year. Some things are easy and good, and some are hard. These events can sway our emotions and our prayer life if we allow them. Other events happen that seem small or a shot in the dark. However, they turn out to be exactly what needed to happen. Opposition may come in life but God can also raise people up to provide encouragement if we are willing and available to receive it. Situations in our lives can change. That's why we have to decide how we are going to believe. Our faith shouldn't be changed by events. Our events are meant to be changed by our faith. 

In 2019, I made a choice to ask God for health for Jaycee. I really believe that by changing my prayers I have been able to see a healthier version Jaycee. The 8 weeks of physical therapy helped Jaycee's endurance and activity level tremendously. Deciding to go to Mayo Clinic provided us new insight into Jaycee's pulmonary problems and better ways of treating them. We ended 2019 on a 6 month no hospital admissions streak. Six months! 

Last night, I said a prayer for Jaycee before kissing her good-night. Want to guess what I prayed for her?

Friends, what do you need to start asking God for again?

submit to reddit