Tuesday, November 20, 2018

How To Include All Families at Church During the Holidays

I recently had another post on Key Ministry's website. In case you missed it, here's the beginning of the post with a link to the full article. The holiday season often brings about special events in churches. From live dramas, choirs, dinners, and parties, there’s a variety of activities that local churches host to celebrate Thanksgiving or Christmas. Will the local church include all members and their families during these celebrations?
As churches plan their special events, there are two things they need to consider.
1. Are families of children with special needs and disabilities attending your special events?
Whether it’s a meal or a special service, the church should strive to see all members attend their seasonal activities. If certain families with children with special needs have not participated in the past, then strive to change that. The easiest way to understand their point of view is to simply ask them why they haven’t attended in the past. There may be a wide range of answers from a time conflict with their daily schedule or issues related with bigger crowds. Take time to listen to the family. Hear their responses. Be willing to help accommodate any needs to help them attend. Some things have easy fixes.

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Tuesday, November 13, 2018

Easy Faith in Hard Challenges

Have you ever doubted the goodness of God?
Have you ever doubted God's love for you?

If you haven't, then congratulations. You are amazing!! Truly- you are.

If you are like me, maybe you have struggled at times in your life.

You may have had some sort of crisis of belief or questioning of God's presence in your life for different reasons. It could have resulted from the death of a loved one, a tragedy, a scary diagnosis, or the loss of something important. There are many reasons why people end up in a situation where they question their faith.

For me, it was a series of events during the first 4 years of motherhood. It was watching my child have two open heart surgeries, and all the things that went with it. It was handing my child over for a few minor surgeries. It was having five or six specialists in my daughter's life prescribing medications, making suggestions, and running tests. It was failed hearing tests, complications during routine procedures, and unexpected diagnoses. It was having my daughter admitted to the hospital a few times for breathing issues. It was a miscarriage. It was personal and professional changes in my life as a result of all of those events.

In the first 4 years of becoming a mother, I became very confused in my faith.

I wondered if God had forgotten about my family. I questioned the goodness of God, because I didn't see much good happening in my life. I doubted God even loved our family because I felt pain, hurt, and stress. I didn't feel loved at all. Every problem with my daughter caused more and more doubts. None of my daughter's health issues seemed fair. I wondered where God's justice was in all the health scares.

These doubts were small in the beginning. I didn't wake up with questions that suddenly seemed legitimate. It happened over the course of those tough years experiencing things I never imagined. It was days and months and years of twinges of doubt and lack of understanding that led to me questioning fundamental beliefs about God.

I struggled for a bit to understand my life, my faith, and how they could go together while parenting a child with chronic health conditions. I didn't stay in the struggle thankfully. I recognized I was in a bad place and took steps to change my perspective. I also knew God was real and my thinking had somehow changed because of circumstances in my life.

I discovered some important things in my spiritual struggle.
1. If you doubt the love of God, your doubt will grow uncontrollably! The love of God is clear in scriptures. Love is what motivated God to send his son to bring salvation. If you doubt the basic characteristic of love, the doubts will grow. You'll have nothing to stand on if you can't stand on that knowledge. You won't know how to pray or believe for simple things because the love is in question.

2. Having questions during struggles may be "normal," but they aren't helpful. I recently heard a minister say, "Questioning God's plan and love for you does not empower you to move forward. Faith does!" It's so true! Questions aren't empowering. They cause division and doubts. Yet, I was more apt to stay in the questioning mode instead of just trusting God with my life.

3. Trying to find God in your circumstances, especially a health crisis, is often more difficult than we make it. God is there. Period. We don't have to search for him. When we do, we are walking by sight and not by faith. I have tended to look at stressful health situations and claim God is just nowhere to be found as there were no apparent positives around us. Yet, that thinking was wrong. I had to trust that He was there instead of looking for proof that He wasn't.

4. Did I become a Christian for the perks? Did I think that adversity would never find me? Did I think that my Christianity would keep all harms from my family? Yes, there are blessings of God when we are in relationship with Him, but we live in an imperfect place. The earth is not heaven; there will be hard times here. So why do I get frustrated with God when I should be running to His peace? What was the point of being a Christian if I responded to adversity like anyone else? Hmmmm...

I've learned many things about faith as a parent of a medically complex child. I've found out that doubts come easily and swiftly in health crises. I finally discovered how to keep a mind focused on the truth. If you're struggling, stay in the Bible, continue in prayer, and reassure yourself of the truths of God.
He's there.
He loves you.
He cares.

Want to hear more? I discussed this topic with Sandra Peoples recently on the Not Alone facebook page.  
Watch it here!!
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Tuesday, November 6, 2018

Letting My Daughter Be Herself

16 Now as the ark of the Lord came into the City of David, Michal, Saul’s daughter, looked through a window and saw King David leaping and whirling before the Lord; and she despised him in her heart…20 Then David returned to bless his household. And Michal the daughter of Saul came out to meet David, and said, “How glorious was the king of Israel today, uncovering himself today in the eyes of the maids of his servants, as one of the base fellows [h]shamelessly uncovers himself!”

21 So David said to Michal, “It was before the Lord, who chose me instead of your father and all his house, to appoint me ruler over the people of the Lord, over Israel. Therefore I will play music before the Lord. 22 And I will be even more undignified than this, and will be humble in my own sight. But as for the maidservants of whom you have spoken, by them I will be held in honor.” 2 Samuel 6:16, 20-22  NKJV

David was fearless in many ways. He lived his life in joyful expression to God and didn’t care what anyone thought of him. My daughter, Jaycee, is much like him.

Jaycee loves Beauty and the Beast. She has the cutest accessories, dolls, and room d├ęcor featuring all the lovable characters. For her birthday earlier this year, I excitedly gave my 12-year-old daughter a Belle costume. I knew she would love it, and she did. She immediately put it on and Facetimed family members to show off her dress. 

A few weeks later, Jaycee chose the Belle dress to wear for Sunday morning church. It was a dress after all, and she always wears a dress to church. However, it was March and her Belle dress may seem odd to other church parishioners. I wasn’t sure what to do, but I let her wear the dress. 

On the drive, I admit that I considered how people would react to her. Honestly, I felt a tad embarrassed by her outfit choice and was second guessing myself. Perhaps, it wasn’t socially appropriate, and maybe I should have stopped her. What if other children made fun of her? I let several questions swirl in my head on that drive to church. Meanwhile, Jaycee rode in the passenger seat swaying to the music we were listening to; she was not at all worried about her lovely blue and white dress. She was happy-plain and simple. 
At church, people loved seeing Jaycee dressed as her favorite character. Many knew of her Belle obsession and commented on her beautiful likeness. A few mistook her for Alice in Wonderland, but I corrected them. Jaycee was thrilled to be in the dress. Nothing horrible happened. She was being her true self. Who was I to stop her from being that? I don’t want to dampen her spirit. She has enough people to do that. 

I want Jaycee to be fierce like David, and I surely don’t want to be the soul-crushing Michal in her story. Since that day, Jaycee has worn the dress to doctor's appointments, the grocery store, and other public places occasionally. I let Jaycee be herself. She doesn't care. Why should I? 

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Tuesday, October 30, 2018

Finding Hope...True Story

Recently, I had a post on the Key Ministry blog called, Finding Hope I Didn't Know I Lost. I'm always grateful to have a post on their site and wanted to share part of it with you: I read the title of the message, Let Hope Arise, on the large screen in the front of the church. “Hope, I got this,” I thought.
After the speaker began, I realized I didn’t have hope, at least not in every area.
I regretfully admit that I felt odd as we repeated the speaker who led the chant, “Something good is going to happen to me.” I don’t think I have spoken those words in years.
Even though I don't commonly profess that good things will happen to me, I don’t consider myself as a pessimist. At one time a few years ago, I was definitely one. After some health scares with my daughter and reaching unprecedented stress levels, life seemed hard as it revolved around my child's daily medical interventions. At that time, I commonly thought:
“I’m never going to live without stress.”
“My child’s never going to be healthy.”
“I can’t imagine my life ever feeling easy while managing my child's care.”

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Tuesday, October 23, 2018

The School People Assumed My Daughter Needed

"Is your daughter going to attend "B" school?"

People started asking me this question when my daughter with Down syndrome was just 2 years old. The question bothered me for one main reason. People assumed my daughter needed "B" school because she had Down syndrome. That didn't sit well with me.

"B" school is a day school in my area serving people with intellectual disabilities in the moderate to profound range who are between the ages of 6-21. Life skills, functional skills, and tailored academics are all provided at "B" school.

Of course, I knew that "B" school may be a possibility for Jaycee in the future. However, I didn't automatically assume she would go there just because she had Down syndrome. Who was to say that she couldn't be taught in a special education classroom, a communication disordered classroom, or a regular classroom? At age 2 when these questions started, I couldn't predict what Jaycee would need.

Still, some people asked me about this particular school when Jaycee was quite young. You'd probably be surprised by the number of times I was asked about it by strangers or acquaintances. Even a Wal-Mart cashier asked if my daughter, who was shopping with me, attended "B" school. One can only surmise that she asked the question because of her Down syndrome.

Most people who asked me about "B" school had connections to it either by a family member who attended or worked there. Everyone sang the praises of the school and encouraged me to send her there. I was never opposed to it, but I wanted to see what my daughter needed. What did I have to add to this conversation while I was raising my toddler or preschooler?

These are the sort of assumptions that parents in my situation don't like. I have heard other parents tell me similar stories. One parent of a diagnosed child ran into an acquaintance who taught special education. The special education teacher told the parent that she looked forward to having her in the class as a student one day. That comment didn't sit well with the parent and for good reason. When a comment like this is made for a child under 3, one can only assume that the diagnosis is driving the comment. This parent, like me, wanted the child viewed as a whole...not just a diagnosis.

As Jaycee began attending school when she was 3, the staff always looked at all of her abilities and challenges when making placement decisions. Early on, her inability to speak, tendency to run off, and delays in motor skills led her to an early childhood classroom- with increasing time with peers in the preschool room. When she started grade school, she went into a room for children with communication disorders who needed a strong language curriculum while making accommodations for other needs (such as her inability to write). She had opportunities to be around peers too.

As Jaycee has gotten older, I knew "B" school was coming. A battery of tests from an educational specialist showed me numbers and figures about my child that I already knew. Jaycee was eligible for "B" school. Even with her best efforts and many helpful therapists and professionals over the years, "B" school seemed to be the best option for her. Unlike the people who assumed she would need the school when she was a small child just learning to walk, the decision was made on a number of factors...not just on her Down syndrome diagnosis.

In August, Jaycee began attending "B" school. It was a big change for all of us, but we knew it was the best place for her at this stage of her life. She's settled in quite well, made some new friends, and seems to have made some connections with the staff there.

Even though Jaycee ended up at the place where some assumed she would go based off her diagnosis alone, I hope others can learn from this story. Assumptions about abilities shouldn't be made off a diagnosis alone. She's more than her Down syndrome. Ask her new teachers. They'll tell you.

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Tuesday, October 16, 2018

I Hope I Can Love Like My Daughter

My daughter is many things. Most acquaintances seem to view her as a child with Down syndrome who can't speak very well and is often sick. People who know her well often describe her as joyful, friendly, and a girl with a big personality. Jaycee is all of those things and much more.

What always touches my heart the most when I watch my daughter is her ability to love people. She oozes love. She doesn't care if it's a stranger or a familiar person. She is not shy to display her love.

Last weekend, I took Jaycee to a pumpkin patch. As she waited in line to get her face painted, she was surrounded by a few other little girls. A younger child sat in a seat patiently waiting for her turn. Jaycee bent over and kissed her on the head three times in the span of five minutes. Jaycee would smile brightly after each kiss as she looked at the little girl who didn't quite know how to take Jaycee's affection.

Some people may see Jaycee's affectionate displays as inappropriate given her age of 12. She doesn't often go around hugging and kissing strangers, let me be clear. But, she does have moments when she will spontaneously love on people-usually younger children. I don't mind it, because I wish I was more outgoing and loving like her.

Our society doesn't act like her, me included. I don't go around hugging and loving on most people, especially strangers. I hold back my feelings and am more reserved.

I think my daughter loves on people the way God wants us to- holding nothing back. She doesn't wait for the person to reach out to her for love; she gives it away first with no expectation of it being returned. But, that's not the only way my daughter loves well.

Jaycee gets along with people who are sometimes difficult to love. I shared my perplexity to my father over Jaycee's attachment to a particular person. I expressed how I didn't understand why that person responded so well to Jaycee given that the individual didn't often express happiness for most people. My father responded, "It's easy to understand. Jaycee loves everyone with no judgment. That person can feel it."

That made sense to me. Jaycee doesn't have the same views about people. She is able to recognize what's good in people. She doesn't hold grudges. She doesn't get an attitude with people. She is a good person. She loves and loves well.

When I read scriptures about God's love, I know my daughter is closer to walking in that love than I. She's a gift. I hope I can be more like her one day.

34 A new commandment I give to you, that you love one another; as I have loved you, that you also love one another. 35 By this all will know that you are My disciples, if you have love for one another.
John 13:34-35 NKJV

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Friday, October 12, 2018

My Book: Badges of Motherhood SNEAK PEEK

I've dropped some hints over the past few months about the book I have been writing. I am stoked to announce that it is finished! I have spent years writing these stories that have impacted me the most as a mother. Sometimes, my daughter's health issues put the book on hold for months at a time, but I began working on the book again when life settled down. It has been a dream of mine to see this thing out to completion, and I'm excited that it is now accomplished.

Badges of Motherhood: One Mother's Story about Family, Down syndrome, Hospitals, and Faith is the story of my life as a mother over the last 12 years. If you are a regular here on the blog, you know a little about my life and my children. If you don't, let me fill you in. I am the mother of two children, Jaycee and Elijah. Jaycee has many diagnoses including: Down syndrome, a twice repaired heart defect, Wolff-Parkinson-White syndrome, GERD, asthma, obstructive sleep apnea, and recurrent pneumonia. When she gets a simple cold virus, it attacks her lungs in unpredictable ways. I have been at her side through many hospital admissions and stays in the Intensive Care Unit.

As you can imagine, the events I have lived through as a mother have impacted me spiritually and emotionally. I have had to understand my Christian faith in new ways as I watched my sick child suffer again and again in the hospital. I have had to work through stress, anxiety, and fear from certain diagnoses. When people said or did things that made our situations worse, I have had to choose forgiveness. My book delves into all of these topics.

In Badges of Motherhood, I move the story from one chapter to the next using the concept of badges. The badges represent the especially rewarding and challenging experiences or emotions a mother has with her child. The first chapter in the book is the Delivery Badge, which tells the story of the births of both of my children. Chapter two is the Diagnosis Badge. In this chapter, I recount all of Jaycee's major diagnoses by sharing how they came about, who gave the diagnosis, and how her life and mine changed as a result of them. From there, we move to the Hospital Care Badge where I describe what it's like caring for a child in the hospital.

In all, there are 17 chapters or badges in the book. The most difficult chapter to write was the Intensive Care Unit Badge followed closely by the Miscarriage Badge. The most revealing chapters into my thoughts and emotions can be found in the Faith Badge and the Stress Badge. Not all of the chapters are serious and intense. The Wish Badge describes Jaycee's wonderful experience through Make-A-Wish, and the Child Baptism Badge tells how I successfully prepared Jaycee for baptism at church.

It is true, Badges of Motherhood, is as much about my daughter's story as it is mine, but our lives are connected and intertwined. She is the person experiencing the illness in the hospital bed, and I am the helpless mother wondering how I can help her. I can't imagine how she has felt as she has endured everything in her life, but I do know how I have felt as her mother.

I know that many people cannot imagine a mothering experience like mine. But, I am convinced that most mothers have their own badges too that make them who they are. It is my desire that readers can reflect on their own lives and appreciate their own badges. I also hope that Jaycee's miraculous story inspires them in some way.

Badges of Motherhood is only available on Amazon in both an eBook version and a print version. The print version is available right now. The eBook will be available November 2nd, but you can pre-order it today too! There are a few more pictures in the eBook version that aren't in the print version, but all the written content is the same. Just follow this link: BADGES OF MOTHERHOOD
Just for you- here's a look at the book's full introduction:

The signs are all there: you get less sleep, your day is centered around a tiny version of yourself, and you look forward to Mother’s Day. Yes, you are a mother. Maybe motherhood has been everything you have dreamed about. Maybe it was nothing like you thought it would be. Still, you find yourself in this unique, yet timeless, role of a mother.

Motherhood has only one requirement: to have a child. That child may have come through natural means, adoption, or marriage. No matter how the child became yours, a new world has come to you that you may have otherwise not have known so intimately.

Once a woman has entered motherhood, she begins learning new skills and having new life experiences, which are referred to as “badges” in this book. These badges tell the story of the achievements and challenges of the mom and her child’s care. The badges are symbolic of particularly special times in the mother-child relationship. Some of these badges are kept throughout a mother’s life, no matter how much time passes. Other badges can be discarded or lost.

There are some badges that all moms will go through like the Delivery Badge. There are some badges that only some moms will receive, such as the Diagnosis Badge. Some badges are highly anticipated (i.e. Child Baptism Badge) while others are not (i.e. Hospital Care Badge). Some badges can be earned multiple times for separate events or for each child, but some badges are earned only once in a mother’s life.

In all, the badges represent triumphs in the mother’s life, hardships that have been overcome, skills that were necessary for those moments, and the basic journey of a mom raising her child.

Since 2006, I have been acquiring several badges while parenting my two children. I had no idea just how much my life would change when I became a mother. Parenting has provided the most fulfilling, beautiful, and challenging moments of my life. I hope you enjoy reading about some of my badges and can value the badges you have earned in your journey as well.

Thanks for reading today's post. If you have a question for me, submit it in the comments below. (Comments are moderated, so they will not show up immediately once submitted.) Please feel free to share this post on Facebook, Twitter, etc. I hope you enjoy reading Badges of Motherhood!
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