God Speaks-Special Needs Edition: Part 3

Welcome to part 3 of a series highlighting how God speaks to people. As a Christian mother raising a child with special and medical needs, I have to hear God's voice. I need God's wisdom and encouragement to raise my daughter and serve my family well. 

As a Christian, I understand God wants to have relationship with people. He wants to speak to those he has created. The Bible tells how God has spoken to people in the past. It also provides insight into how God communicates to people even today. There are numerous examples to look at in the Bible. In previous posts, I have discussed how God speaks through dreams and other people. In this post, I'll share some ways that God has used things in the world to speak to me. 

Photo by Adam Kontor from Pexels

There are many examples in the Bible of God using things in the world to speak to people. After the flood, God put a rainbow in the sky to convey a promise. Moses saw a burning bush that wasn't consumed. It caught his attention, and then God spoke to him. When Saul ripped the robe of Samuel, Samuel had a message for Saul from God: “The Lord has torn the kingdom of Israel from you today and has given it to someone else—one who is better than you." (I Samuel 15:27) These are just some examples of things happening in nature or in real life that carried a deeper meaning. Here are three examples from my own life on this topic:

An Annoying Bird

In 2006, a bird was tormenting me. I suppose the first thing you need to know about me is that I dislike birds. For weeks, a cardinal bird was repeatedly banging into windows at my house. My displeasure for birds only made this situation more annoying. The internet suggested that the bird running into my window wasn't too uncommon. From what I read, it seemed the bird was seeing its own reflection in the window and, thinking it was another bird, was defending itself. The bird just didn't peck and run into one window. It seemed to follow me around the house. It would run into Jaycee's bedroom window for hours, my bedroom, the basement, or the kitchen. It drove me crazy. 

At the same time, Jaycee was just a few months old and getting ready for her first open heart surgery. I was dealing with a lot at that time. I was a few months in to adjusting to the news of Down syndrome and a heart defect. I was giving medications and bottles around-the-clock. I was exhausted and stressed, as anyone would be in my situation. I was also tormented in my thoughts, and I struggled with fear with the health situations we were facing as a family. 

I am a person who looks for signs of God in my everyday life. After a while, I wondered if the bird meant something deeper. It certainly tormented me-much like all the other stressors in my life. I have a Christian signs and symbols book I reference from time to time. I recall looking up the meaning of a cardinal and discovering it can represent Satan. It seemed like the perfect explanation of what was happening in my life. Much like that bird attacking my innocent house, I felt like I was being attacked (and my daughter) out of nowhere. I had never dealt with so much stress in my life. My mind was being battered with thoughts that didn't come from God. I know they weren't from God because they were full of fear, worry, and anxiety. I felt a parallel with the bird's persistence at my windows to Satan's persistence with my thoughts and faith. 

Interestingly enough, when we came home from the hospital from her heart surgery, the bird was suddenly gone. 

Smoke Signals

Probably somewhere around 10 years ago, I picked up Jaycee from my mom's house and headed home. As I left, I saw smoke in the distance. I live in a rural area where sometimes people burn brush piles or farm fields, so smoke is not uncommon. The smoke can be seen from miles and miles away. On this particular day, the smoke seemed to be in the direction of my grandma's house. I had a bunch of thoughts come to mind with concerns about my grandmother and the fire's location. I sped up as I made my way down the road that passed by her house. As I got closer, I realized I had clearly misjudged where the fire was. The fire was miles and miles away from grandma's house. She was safe, and my worries for her were unfounded. 

As I continued on my way home, God spoke to me about what I had observed. Smoke does not always mean danger and loss. Sometimes, fires are planned and controlled burns do good. Smoke can look threatening to outsiders far away but it may not be. In fact, sometimes the smoke is a large puff, high in the sky making one think the fire is a huge disaster, yet the fire is quite small and contained. 

At that stage of my life, Jaycee's medical diagnoses were causing me to freak out completely. I easily jumped to worst case scenarios in my head. The congestive heart failure, Down syndrome, open heart surgery, oxygen use, and other issues were weighing on me. I was worried about so many things. Any new issue that popped up felt gigantic and too much for me to process. I blew some symptoms or issues out of proportion. I worried about Jaycee passing away; it was a real threat in my mind. The fact that doctors are required to give you odds, risks, and chances of death in procedures most likely fueled that fire (so to speak). 

God used my reaction to that smoke as a way to recognize my own reactions and fears with Jaycee. Not everything that seems horrifically out of control is. Not every symptom or issue was uncontrollable or untreatable. Jaycee's conditions weren't necessarily an impending disaster. I was over-reacting and jumping to poor conclusions much like I did when I saw that smoke in the direction of my grandma's house. Ultimately, God wanted me to examine my thoughts, start taking some of them captive, and not let fear run my mind. 

A Re-Occurring Date

October 19th is a "sign" that I didn't see right away. In 2013, Jaycee survived a 4 week nightmare battling septic shock, ARDS, respiratory failure, pneumonia, and rhinovirus. She required a ventilator for 3 weeks and was touch-and-go a few times. It was a happy day when she was discharged from the hospital on October 19, 2013. 

A year later, Jaycee was baptized at our church on October 19th. This date just happened by chance; I didn't plan it at all. It wasn't until later that I realized her baptism and her discharge date were the same day. When I discovered the linkage, I felt like God was redeeming her life, especially after all she had been through medically.  

A few years later, I was standing in Jaycee's room gazing at the picture of her baptism. My eyes were drawn towards a memory box hanging on the wall too. The memory box had her newborn hospital bracelets and ultrasound that indicated that Jaycee would be a girl. For some reason, I noticed the date on the ultrasound. And there it was- October 19, 2005. 

I had to laugh when I saw the date. To me, it was a sign that God had many things lined up in our lives. There was an order in all of the chaos. The pictures on the wall were taken 9 years apart on the same day and brought me comfort knowing that God was working behind the scenes all along.  

There are dozens of other things I could share on this post, but I will leave it at this. I believe there are things that happen in this world that we can learn from and God can use to speak to us. I hope you are willing to stop, see them, and hear God. I hope you visit back for part 4 in this series. 

Intellectual Disability: Preparing for Baptism

Last week, I had a post on Key Ministry's website offering ideas on how to prepare those with Intellectual Disability (ID) and Developmental Disability (DD) for baptism. If you missed it, check out the beginning of the post and then click the link to read. 

Baptism is a sacrament that many in the faith want to pursue. But, what if your loved one has an Intellectual Disability (ID) or Developmental Disability (DD)? Can they be successfully baptized? How do you help them understand and prepare for baptism?

As a Christian mother, I had a God-given desire to see my child with Down syndrome baptized a few years ago. At the time, she was 8 years old, nonverbal, and dealing with a myriad of health conditions.

I was puzzled, at first, on how to prepare and teach her, but then I realized I knew what to do. As a pediatric speech-language pathologist, I help children understand new situations and concepts all the time using multiple visual and auditory methods. I just needed to apply them to a religious act.

Click this link to keep reading!

Dear Pastor, Thanks for Baptizing My Child with Down syndrome

Pastor Chad,

It's hard to believe that almost 3 years ago, I watched you baptize my little girl, Jaycee. You probably have no idea what that moment meant to me and my family.

In my eyes, Jaycee had been part of our faith for a few years. Jaycee has always enjoyed going to church, insisted on using her talker to pray before meals, understood Jesus and his importance in Christmas, and loved to worship God.

Our church, like many others, generally believe that in order to be baptized, someone should first confess Jesus as their savior with their mouth. Having Down syndrome and only speaking a few words, this prerequisite seemed almost impossible for Jaycee.

I often wondered when I watched other children being baptized when Jaycee's day would come. How and when would this happen?

In 2013 as I sat in the intensive care unit, I was afraid Jaycee's moment had passed. Jaycee was on a ventilator and a room full of IV pumps and machines needed for the treatment of septic shock and pulmonary and cardiac failure. That month in the hospital was scary and almost life ending. But, she made it! I left the hospital with a sudden desire to get Jaycee baptized. When Jaycee was discharged on October 19, there was so much to do with her recovery that I pushed the baptism on the back burner.

Finally, I got brave and asked my husband about baptizing Jaycee. He was unsure but after some time to reflect, he decided it was a good idea. Still, I did nothing. I was afraid to ask you to do a baptism on a minimally verbal child. I was afraid you would say no. I know you take the act of baptism seriously and I was afraid you would think I was making Jaycee do this. I was afraid of the rejection I would feel for myself, our family's special situation, and Jaycee if you said no. I didn't want to face that rejection.

For months I trudged along with the thought of baptism coming less frequently. Then, we suddenly found ourselves in the intensive care unit with Jaycee again when a simple dental procedure resulted in aspiration pneumonia. After a scary day in the hospital spent teetering on putting Jaycee back on a ventilator, I told my husband, "If she makes it out of here, she's getting baptized! We can't wait!"

When things settled down, I bravely wrote you an email expressing my desire for Jaycee and trying to make a case for her to get baptized. I waited (impatiently) for a response and became nervous when I saw you responded back. You said you were going to pray about it. I admired you for not telling me no right away. As I waited for your final response, I came up with alternative plans some of which involved baptizing her in a hot tub with a clergy off the street.

With nervousness, I opened your final email in which you agreed to baptize Jaycee if it was our desire. You came up with a plan to baptize her after service so that she could take her time and have her family gathered around her to make her comfortable. You had enough forethought to ask me about her comfort level with water. A date that worked for both of us was set.

I had some time to prepare Jaycee for her baptism. We watched YouTube videos of people getting baptized. I wrote Jaycee a special story about it using words I knew she would understand. Then the week before the special day, I started to practice baptizing her in the bathtub without actually taking her head under the water. She understood what she would do, and I was confident she could do it.

On October 19, 2014, eight-year-old Jaycee entered the water with a smile on her face. Her family and close friends surrounded her to witness this happy occasion. You spoke to our family briefly and then to Jaycee trying to use some of the words I used with her. Then the big moment came and Jaycee wasn't scared at all. She left with the same smile on her face. There were tears that day but none of them were from her. It wasn't until later that I realized what happened on October 19th the year before making it even more special. (Read above if you missed the date connection!)

I wish you could have seen Jaycee watch the video at home later while she smiled and cheered for herself. From that point on, when she referred to her baptism, she signed "swimming." You missed the moment in the church one Sunday when Jaycee pointed to the door leading to the baptismal and signed "I went swimming there." I wish you could have been in my living room the day I was watching one of your sermons online when Jaycee looked at the screen and signed "That guy and me swimming." In her bedroom, Jaycee looks at her baptism pictures and has told many visitors of her "swim" at "church." You missed the conversations with me and other parents of children with special needs when they asked me how Jaycee did the baptism with no fear and wondered if their child could do it too. Since you missed these things, I want you to know how much that day meant to us, people who witnessed it, and other families with children with special needs.

When we found ourselves back in the intensive care unit since then, I was comforted by the fact that Jaycee was baptized. For that, I thank you. I thank you for allowing Jaycee to take part in her faith even if she can't do all the steps everyone else does. Thank you for helping our family have that special memory in the church and not in some one's hot tub.

We'll be sure to remind Jaycee of what she did on this date every year, so she'll never forget.

Evana

Happy Baptism Anniversary!

It's a special day today!! Three years ago today, Jaycee was baptized! 

Today for Down syndrome awareness month, I want to celebrate this occasion. Yes, people with Down syndrome can get baptized (or take part of other religious acts). 

Before the "dunking" under water. Jaycee is looking at some of her family and friends off to the side watching. 

Another picture before the event!

The after! She did it! She was happy too!

Age 8

More on this baptism tomorrow! Stay tuned!!!

This post is written for Down syndrome awareness month. Bloggers write all 31 days in October for Trisomy 21 awareness. 

Jaycee's Baptism Anniversary

Today is a special day for our family.

Two years ago today, Jaycee was baptized in our church surrounded by friends and family. It was a beautiful Sunday afternoon.

October 19, 2014 Jaycee with Pastor Chad with me watching from the side

Before this happened, I can't tell you how many times I witnessed other children being baptized in church wondering if and when I would see this with Jaycee. I wanted to see her grow in our faith. I wanted her to understand this important step. I wanted her to live long enough (she's had some really close calls due to her respiratory issues) to have this chance.

I wanted these things but I knew she had large disabilities. I wasn't sure if it was reasonable to expect a minimally verbal child to be baptized. I wasn't sure if she would understand and if people would be open to the idea.

I had a stirring in my heart that it was time to prepare Jaycee for baptism. I tried to ignore it but the thought of Jaycee being baptized came again and again. She had been extremely sick in the ICU a few times before getting baptized. While this wasn't the reason I started the process of getting her baptized, it is what finally motivated me to speak up and get a date scheduled.

Part of writing and sharing our life with the public is to share information. The topic of Intellectual Disability, baptism, and church guidelines is a topic that is not widely discussed. There are some denominations like the Catholic church that have written guidelines on this topic but this may not be the case for your church or faith.

If you are a parent with a child with limited verbal skills and/or an Intellectual Disability, I urge you to pray and reflect on this topic. If this is a desire of your heart, do not ignore it.

Here's a great response to the topic of baptism and intellectual disability on another site:

Should we baptize people with intellectual disabilities?

If you want to know how I taught Jaycee about baptism read this: Teaching Baptism

To read the backstory of the baptism, read this: To the Pastor Who Baptized My Daughter

To the Pastor Who Baptized My Daughter

Pastor Chad,

It's hard to believe that almost 1 year ago, I watched you baptize my little girl, Jaycee. You probably have no idea what that moment meant to me and my family.

In my eyes, Jaycee has been part of our faith for a few years. Jaycee has always enjoyed going to church, insisted on using her talker to pray before meals, understood Jesus and his importance in Christmas, and loved to worship God. Christians generally believe that in order to be baptized, they should first confess Jesus as their savior. Having Down syndrome and only speaking a few words, this prerequisite seemed almost impossible for Jaycee.

I often wondered when I watched other children being baptized when Jaycee's day would come. How and when would this happen?

In 2013 as I sat in the intensive care unit, I was afraid Jaycee's moment had passed. Jaycee was on a ventilator and a room full of IV pumps and machines from being in septic shock and pulmonary and cardiac failure. I suddenly had a burning desire to get her baptized. When Jaycee was discharged on October 19, there was so much to do with her recovery that I pushed the baptism on the back burner.

Finally, I got brave and asked my husband about baptizing Jaycee. He was unsure but after some time to reflect, he decided it was a good idea. Still, I did nothing. I was afraid to ask you to do a baptism on a minimally verbal child. I was afraid you would say no. I know you take the act of baptism seriously and I was afraid you would think I was making Jaycee do this. I was afraid of the rejection I would feel for myself, our family's special situation, and Jaycee if you said no. I didn't want to face that rejection.

For months I trudged along with the thought of baptism coming less frequently. Then, we suddenly found ourselves in the intensive care unit with Jaycee again when a simple dental procedure resulted in aspiration pneumonia. After a scary day in the hospital, I told my husband, "If she makes it out of here, she's getting baptized! We can't wait!"

When things settled down, I bravely wrote you an email expressing my desire for Jaycee and trying to make a case for her to get baptized. I waited (impatiently) for a response and became nervous when I saw you responded back. You said you were going to pray about it. I admired you for not telling me no right away. As I waited for your final response, I came up with alternative plans some of which involved baptizing her in a hot tub.

With nervousness, I opened your final email in which you agreed to baptize Jaycee if it was our desire. You came up with a plan to baptize her after service so that she could take her time and have her family gathered around her to make her comfortable. You had enough forethought to ask me about her comfort level with water. A date that worked for both of us was set.

I had some time to prepare Jaycee for her baptism. We watched YouTube videos of people getting baptized. I wrote Jaycee a special story about it using words I knew she would understand. Then the week before the special day, I started practice baptizing her in the bathtub without actually taking her head under the water. She understood what she would do, and I was confident she could do it.

On October 19, 2014, Jaycee entered the water with a smile on her face. Her family and close friends surrounded her to witness this happy occasion. You spoke to our family briefly and then to Jaycee trying to use some of the words I used with her. Then the big moment came and Jaycee wasn't scared at all. She left with the same smile on her face. There were tears that day but none of them were from her. It wasn't until later that I realized what happened on October 19th the year before making it even more special.

I wish you could have seen Jaycee watch the video at home later while she smiled and cheered for herself. From that point on, when she referred to her baptism, she signed "swimming." You weren't in the bathroom with us one Sunday when Jaycee pointed to the door of the baptism and signed "I went swimming there." You weren't in the living room the day I was watching one of your sermons online when Jaycee looked at the screen and signed "That guy and me swimming." You haven't been in her room to see the pictures displayed that church gave us of her baptism so she can look at, remember, and tell visitors of her "swim" at church. You weren't there when other parents of children with special needs asked me how Jaycee did the baptism with no fear and wondered if their child could do it. Since you missed these things, I want you to know how much that day meant to us, people who witnessed it, and other families with children with special needs.

When we found ourselves back in the intensive care unit just a few months ago with Jaycee in respiratory failure again, I was comforted by the fact that Jaycee was baptized. For that, I thank you. I thank you for allowing Jaycee to take part in her faith even if she can't do all the steps everyone else does. Thank you for helping our family have that special memory in the church and not in some one's hot tub. We are looking forward to talking to Jaycee about her upcoming baptismal anniversary, and it's all thanks to you!

Evana

31 for 21: Teaching Baptism

Blogging 31 for 21 continues with Teaching Tuesday:

Today, I will teach you how I taught Jaycee- an 8 year old sign language using non-verbal child with Down syndrome- about baptism.


My steps:
1. I guess it goes without saying that the first step was to live out our Christian faith. We go to church every Sunday unless there is an illness or she's in isolation for a medical reason. We listen to Christian music. We pray together. We talk about God. When she's sick, we pray for her. At Christmas and Easter, we really talk about what that means. Basically, I think the first step was to set the foundation for years.

2. When baptizing became an idea, I understood that many Christians believe salvation is the precursor. So, for months off and on, I would say things to Jaycee like, "God loves you. He sent his son Jesus to die for you. Do you love God? Do you believe in Jesus?" Basically, I asked her simple questions and talked about the essential salvation points. Sometimes, she would do her grunt for yes and sometimes she would say nothing. I had these little conversations here and there for months. Jaycee cannot talk. Therefore, she cannot say a traditional prayer of salvation.

3. After some time, I talked to our pastor about baptizing Jaycee. We came up with a plan that we were all comfortable. Instead of getting baptized during a service, we would do Jaycee after the service by herself. This way Jaycee could take her time and have her family close to her. With a tentative date in mind, I worked on these next steps.

4. I wrote out a book for Jaycee that hit the major beliefs Christians have, why someone gets baptized, and what happens in a baptism. There was nothing fancy about it. But, I know Jaycee learns from repetition, and I have used books like this in the past to teach other things. It's a good strategy for her. She liked the book. We read it regularly.

 

5. Next, it was time to bring in youtube. There's several videos there of people getting baptized. We watched some of these. We even watched a video clip of Jesus getting baptized. Jaycee enjoyed the videos, and I explained what was happening as we watched them.

Elijah said, "Jaycee, this looks scary."  He didn't help my cause!

 

6. The final step was to practice in water. I wasn't too worried about this step because Jaycee loves swimming and water. But, I wanted her to practice sitting in the bathtub filled with water and leaning back. I never took her head completely under the water. I did dunk her enough to get her hair wet but I didn't want to scare her by taking her nose and mouth underwater. I didn't feel that part was important since she just had to have that part done officially once. She tolerated the bathtub practice just fine. In fact, she liked doing it. She would gesture for me to baptize her again.

 

So you might be wondering, how did Jaycee do after all that preparation?

 

 

Just fine!  She did it with no problems! She was a pro!

Sunday, October 19th was a day to celebrate!!