Monday, December 24, 2018

The Power of Believing

Last week, I had a post on Key Ministry. If you missed it, here's the beginning of it with a link to the full post.

“What’s Santa going to bring you this year?”
My son turned sharply to the acquaintance who asked the question. Then he firmly said, “There’s no Santa.”
“Yes, there is. You have to believe,” the person tried to persuade my son with no success.
Believing is important, but not in the Santa scenario as my son so accurately saw. As I observed the interaction, I thought back to my early life as a parent. For a time, I believed something totally wrong.
In my early days as a mother, I believed a big lie. The lie whispered in my ear when my daughter’s doctors informed me that she had Down syndrome and a heart defect when she was born. The lie screamed at me when I watched my child struggle, deal with in-home therapies, take medications, and use home medical equipment. The lie seemed verified when someone stared at my child, made a crack using the r-word, or joked about something being “special.”

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Tuesday, December 18, 2018

The Gift of Unexpected Blessings

When your child is diagnosed with a life-long disability, there are many feelings and questions parents face. Though the diagnosis may be different for families, parents often find common ground with their feelings, concerns, and future unknowns.

Sandra Peoples, a Christian author and advocate for special-needs families, has recently released the book, Unexpected Blessings: Joys and Possibilities of Life in a Special-Needs Family. Sandra's book aims to help families of children who have been diagnosed navigate their feelings, relate them to scriptures in the Bible, and move forward in the life set before them. She shares stories about her own personal experience with her son with autism, which allows readers to understand some of her own journey. Her real life examples, quotes from other sources, and scriptures are weaved together seamlessly helping parents let go of their false beliefs, work through their grief, focus on healthy routines, rebuild a strong faith foundation, and create a support system.

Here are some lines from the book that I connected with: 
From Adam and Eve to now, each person has lived out his or her own Plan B. We see this throughout Scripture, including the accounts of Job, Ruth, Jonah, and Peter. 

False promises of a struggle-free life are lies and can't stand up against the truth of God's grace and love. 

When I find myself in a valley, I ask myself, Will I let this draw closer to Him or push me away? 

Yes, we always point to the hope we have through Christ, but we never shame a person for how they are feeling in that moment. 

Going through stressful situations together doesn't usually bring out the best in people. 

Marry someone you can suffer with!

As I read these lines as well as many others, I found myself saying, "YES!" My experiences have been different than Sandra's as I have been raising one daughter with Down syndrome and a myriad of health conditions and one son with Ehlers Danlos syndrome. However, I could relate to many things in the book, and I know other families could as well. 

As you read through the pages, you'll be sure to appreciate the perspective that Sandra brings to families with a diagnosed child. Her book is insightful and thought provoking. It would be a welcomed addition to the library of a family that has a member with special needs. 

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Tuesday, December 11, 2018

Am I a Hero, Incompetent, or Irrational?

People often make snap judgments about others. This is a normal part of life. But, I have found this is especially true in emergency rooms.

Sometimes, I take my daughter to the emergency room (ER) in various states of respiratory need, and I am viewed as a hero. I am thanked by the doctor for bringing her to the hospital and praised for my prompt attention to my child. My notes on her breathing over the previous day or two are found remarkable by the doctor, and further accolades are given regarding my care giving.

It feels good to be the hero and for the doctors to recognize the part I play in keeping Jaycee healthy in intense times of illness. I feel validated in my care. It is, after all, difficult to keep her breathing under control during illnesses. She is minimally verbal, and rarely communicates illness or pains. I must rely on my eyes, the numbers on a monitor, and my ears that hear the changes in her breathing. Even though she is 12 years old, she cannot convey information about how she feels and if her breathing is worsening. Most importantly, when I am viewed as the hero, Jaycee receives the care she needs from the ER in a timely manner.

I'm not often seen as the hero, however. More than a few times, I have been viewed by emergency room staff as incompetent. They see my daughter's breathing tanking, and they assume I'm somehow responsible. I've had doctors make snide comments towards me such as, "You need to be educated on her asthma action plan if she is coming to the ER like this."

Never mind the fact that she was a nonverbal child at the time.
Never mind the fact that I had been monitoring her day and night with much anxiousness.
Never mind the fact that sometimes no matter what I do, her breathing suddenly gets worse.

It doesn't matter though. No one completely understands what I do at home, and my parenting comes into question when her breathing is in a bad state. I can tell by attitudes and words given by medical professionals that I am seen as incompetent. I was even questioned by a social worker once regarding my efforts at home and my involvement with local doctors to monitor Jaycee's breathing. Every time, I am viewed as incompetent it sticks with me for weeks and months. It causes self-doubt. It makes me feel like a bad mother. Even though I know I am trying my best to take care of my medically complex and developmentally disabled child, being regarded as incompetent causes me to second-guess my decisions. That isn't healthy for me.

More importantly, being viewed as incompetent makes me distrustful of those who are suppose to be helping my daughter in the hospital. Instead of jumping in and supporting my family through another scary illness, I'm thrown into an emotional whirlwind by the people I am trying to obtain help from.

On another note, there have been multiple times at the emergency room when I have been viewed as irrational. My daughter has needed the ER many times, but I am not one to go to it for no reason. After 12 years, I know when she is sick but can stay at home. I also know when she is getting worse and needs treatment from real nurses- not her mommy nurse. But, it really bothers me when I am viewed as an irrational mother who has brought her daughter to the ER for no reason.

Sometimes, Jaycee doesn't look too sick when I bring her to the hospital. She has a high pain tolerance, so she may not look as sick as I describe. I'm sure a nurse sees a child watching an iPad peacefully as no reason for alarm, but looks can be deceiving.

There have been many occasions when my daughter's numbers for oxygen saturation and heart rate fluctuate substantially prior to her really making that downward turn in her respiratory status. When her numbers are on the low side of normal during the five second check in triage, it often gives a false impression of the situation. Clearly staff aren't concerned as we have sat and sat for hours without anyone rechecking her on a monitor. More than once, a doctor has recommended continuing treatment at home without rechecking her vitals after the initial triage. More than once, we have spoken our concerns and asked for her to be watched on a monitor for a few minutes before going home. With reluctance, the doctor usually does so and then jumps into action when the problem is finally observed-hours later.

After multiple trips to the ER, I can spot when I am being treated like an irrational person fairly quickly into the process. I hate it when doctors don't listen to me, because they are wasting precious time with Jaycee's health. I hate having to assert my nonclinical opinion of my one and only patient to the health professionals. I hate 'making a case' for them to treat her. Much like when I am viewed as incompetent, these experiences make me feel distrustful of the medical world. The people I take my daughter to for help drag their feet, don't do full examinations, and aren't speedily providing treatment because I am seen as an overreacting parent.

In November, I made two trips to the ER with Jaycee. The first time I went with my daughter she was admitted for 3 nights but I was first treated in the ER like an irrational mom overreacting to an increased oxygen use at night. The second trip to the ER a week later had the opposite reaction. Though I had to wait over two hours to be seen, once called back, my story was listened to and Jaycee was given prompt treatment before being admitted for three more nights with pneumonia.

Several friends have asked me if emergency staff are more prone to pay attention to Jaycee and make sure she gets extra attention in the emergency room because of her history (multiple admissions to the ICU for cold viruses, ventilator use twice for illnesses, recurrent pneumonia needing extra support). I tell them- no! Her history doesn't matter in the emergency room for whatever the reason.

I never know how I will be received by those giving emergency care. Will my daughter be given prompt attention and treatment? Will they blow us off and act like I am irrational? Will they take the severity of the situation and somehow turn it on me? I never know. That is why emergency rooms are hard for me for one of many reasons.

I get that doctors meet all sorts of people in ERs, and they must prioritize patients. But, I hope they would listen more to parents, especially those of medically complex children. I would hope they would want to be seen as an advocate for the child's health instead of an adversary. Unfortunately, I have seen both.
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Tuesday, November 27, 2018

I Will Not Stress Eat. I Will Not Stress Eat.

If you have been a faithful reader on this blog, then you will understand when I say that sometimes my life is stressful. I try not to let stress get the best of me, but it's a demon I fight when Jaycee is sick or in the midst of a health challenge.

Stress has taken its toll on my body over the years in a number of ways. (See the post: How My Body Responds to My Daughter's Illnesses.) Weight gain has certainly made its way into life as a result. I tend to eat when I am stressed, and there's many opportunities for that in the course of a year when parenting a child with many chronic health conditions. I also tend to use caffeine, mainly soda and sweet tea, as a way to give me energy and keep me alert through hard times. If I am doing treatments every four hours around-the-clock, I have used caffeine to get me through it.

Back in August, my husband and I joined the Keto bandwagon. I needed a diet with rules and specifics, and Keto has that. It was a big change for us, but it has made a difference in our lives already. My husband has lost over 60 pounds since August, and I have lost 35. On Keto, you increase your fats and significantly decrease your carbohydrates as you teach your body to burn fat and not carbs. Keto means no soda. Well, I suppose you could have soda with no sugar, but that doesn't appeal to me. Obviously, sweet tea is out the question. Pastas, breads, potatoes-no, no, and no. What does that leave? Meat, broccoli, green beans, and cheese have become my best friends. The diet has been going well overall considering how I was eating prior to Keto, but I recently had my first experience with a real health challenge on this diet.

Jaycee's breathing had an asthmatic wheeze to it near the beginning of the month. At first, it was intermittent, so I started extra treatments as needed. Then, her breathing got a little worse more consistently, so I made a run to the doctor with her. He thought she should start steroids and do set treatments every 4 hours during the day for a few days. I started the plan and wasn't overly concerned with things.

The following day, her breathing suddenly took a turn for the worse. With my husband at work and my son at school, I did a random spot check with Jaycee's oxygen saturation monitor. These spot checks are essential to keeping Jaycee healthy because she does not ever communicate anything about her breathing, fever, or symptoms. I have to catch a problem with her breathing before it gets out of hand. Jaycee's 8:45 am spot check showed her oxygen saturations were 89. 89! I had just checked her an hour earlier and she was 95. The days prior she had been 98 every time. I got out the second monitor to verify the number, and I sprang into action when it read the same.

In these times, I have a set emergency plan for Jaycee from her pulmonary team. I spent the next hour implementing that plan and watching her numbers slowly improve. I was thankful for the improvement but also worried. I never know if the emergency plan will improve the numbers only temporarily or long-term. I decided to pack for the hospital, because if her number got low again, that's where we were headed next. I started to panic because I had a long list of things I needed to do at home. If she did go to the hospital, we'd probably be there several days.

I rushed to complete some tasks just in case we had to leave.
Electric bill-paid.
Soiled sheets from the morning mess-in the dryer.
Clothes I may need in the hospital-thrown in the washing machine.
Work stuff-faxed.
I kept a close watch on Jaycee whose numbers were staying in the safe range. As my essential to-do list was mostly completed an hour later, I felt drained. I also felt hungry. I started craving a delicious non-Keto dish from our local Mexican restaurant. Later, I thought often about pizza and pasta. Some part of me was clearly crying out to stress eat.

I didn't succumb to it though. I had my normal Keto friendly lunch and afternoon snack. There were times when I had the thought: Forget it, eat what you want! But, I resisted. I have to teach my mind and body to react differently to the stress I feel when Jaycee is sick.

Jaycee kept me busy the next few days with medications and monitoring, but I unpacked my hospital bag that thankfully never left my bedroom. I made it through a little health scare at home with Jaycee without stress eating or consuming caffeine. It's sort of a big deal!

I fought the food demon this time and won. Next time, I hope I can be that strong again!
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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 décor 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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Tuesday, October 9, 2018

Dear DS Clinic-Here's Why I Won't Be Back

Dear Down syndrome clinic,

Thank you for the reminder to schedule Jaycee's appointment this year, but I regret to inform you that I won't be coming back. I have been bringing my daughter to your clinic for the last 3 or 4 years. We initially switched to your clinic because we were at a loss with our daughter's health. The referrals you made to specialists in your hospital have been enormously helpful, and for that, I'm grateful.

But last year our visit to the clinic was not helpful. The only person who had anything positive to say was the speech-language pathologist (SLP) who was impressed with Jaycee's ability to communicate with her speech generating device. Maybe the fact that I'm an SLP caused this person to be a little more intrigued by Jaycee's communication and attempts at verbal speech. Whatever the case, the SLP interaction went well, but not much else did.

Our individual meetings with the occupational therapist (OT) and physical therapist (PT) consisted of them watching Jaycee make certain movements or do certain tasks. I was asked several questions. The bottom line from both therapists was that Jaycee's muscle tone was very low, and both appeared concerned by the things Jaycee couldn't do. From my perspective, she's been "really behind" her entire life, so I don't anticipate that magically changing as a preteen. I didn't hear anything real positive from either person.

Both suggested that we needed to seek private therapy to help her- aside from her school therapy she already received. I explained how her muscles have been affected by her hospital stays and illnesses. She use to bounce back from being in a hospital bed for a week, but now she needs quite a bit of recovery time. In addition, we have done private therapy off and on in the past that resulted with minor improvements and varying amounts of co-pays with our health insurance. Private therapy is not cheap. When someone suggests it needs to be done for Jaycee, I understand where they are coming from but last year we were paying off a large medical bill. We weren't looking to add to it.

My biggest problem during the 3 hour appointment was the nutritionist. I know I'm overweight, and I know my child is overweight. I blame much of my own weight gain on the stressful events that have occurred with Jaycee. I have had to cope with her diagnoses and her intense medical care and scares on my own, and I often turned to caffeine and food for comfort. In the past, I haven't always fed Jaycee the best. I know I can improve. However, I didn't need the hour long lecture on weight gain, nutrition information, and food facts. The plate demonstration, I felt, was a bit over the top. I have a Master's Degree, and I felt like at some point the whole thing became a little insulting.

When I tried to explain that part of the problem was the regular use of oral steroids (5 times last year prior to the appointment), frequent illnesses that often include multiple treatments a day for weeks, and a few hospital stays, they were immediately dismissed. I get that the bigger issue is me and what I'm feeding her but to downplay all of Jaycee's health issues that affect her everyday life (and mine) was off putting. It is something to consider. Her biggest health issue isn't her Down syndrome, constipation, and slow metabolism. She doesn't fit in the normal Down syndrome box. Her respiratory status is a major factor in everything we do or don't do. Sometimes, she (and I) are home bound for days and weeks at a time juggling treatments and medicines. Getting her to exercise in the middle of that is not a priority nor even a possibility with her labored breathing. In those times, I often feel like I'm in survival mode as the strain of monitoring her breathing weighs heavily on me.

After an hour, the nutritionist finally exited the room, and it was the doctor's turn to reiterate what the others had said. She, too, continued the lecture on my daughter's weight and how it was detrimental. She, too, was not concerned with how her frequent illnesses contribute to it. At that point, I gave up. I knew my role was to be quiet, accept the handouts, and agree to work on her weight.

Before the day ended, we met with a behavioral specialist. This was the person I was excited to speak with because his advice has always been helpful. At first, the conversation was driven by the topic of the day (her weight) and her lack of interest in exercise. He did provide some helpful ways to try to change that aspect. Then, I finally got to discuss the main concerns I wanted to bring up for this appointment- my daughter's increasing refusals, fears, and displays of anxiety related to all things medical. This concern of mine was something that I did need assistance with because it impacts every trip to the specialty appointments. This was my one priority I wanted to discuss that day with the team, yet it was given very little time. Jaycee's anxiety and behaviors have led me to avoid taking her to routine appointments by myself. I can't do them alone. If this would have been listened to, perhaps, you might also understand why private therapy in a hospital setting (which would be my only option given where I live) would be emotionally draining for Jaycee and I due to the fear she has associated to such places.

When the clinic appointment finished, I felt drained as I made the 3 hour drive home. I started to replay some things in my mind, and self-doubt started to creep in. I shed some tears later that night and again the next few days. I felt frustrated by the appointment, the focus on my child's weight, and my parenting that seemed to come into play. I felt like a crummy mother, and I felt that one problem with Jaycee had been singled out with little praise for anything else I do as her mom. I didn't like how I felt after the appointment. I have enough to deal with in her life as her caregiver who helps her daily with her bi-pap, nebulizer treatments, airway clearance, medicines, and homework.

When I read the letter to ask me to schedule a visit, I decided I wasn't going to add to my stress this year. I have made some recent changes with our diet, but I feel like it probably wouldn't be enough to make the nutritionist or the doctor happy. I feel like we are in a good place, but I don't know if it will be good enough. Thanks to a suggestion from my Aunt Sandra, I found a way to get Jaycee to exercise in the past year without much resistance. Headphones and an iPod with her favorite songs did the trick! Still, I doubt I'll hear any accolades. I'm sure no one would want to hear about Jaycee's 4 hospital admissions since our last visit, 4 oral steroid courses this year, and the long battle to get proper foot braces that allowed her to walk without pain. I feel that the focus will be the faults. For those reasons, I will not be back to your clinic. Maybe next year, I will feel differently. But for now, I'll let the six other specialists Jaycee sees be enough. They monitor her weight as well, and I'm aware of the goals we need to achieve.

I hope if I do come back that I will feel acknowledged. I hope that my daughter can be viewed as an INDIVIDUAL with Down syndrome who certainly doesn't fit every characteristic. I also hope my own concerns can be discussed more at length.

Jaycee's Mom

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Tuesday, October 2, 2018

Diagnosed: 3 Views from the Church Body

Last month, I had a post on Key Ministry called, Diagnosed: 3 Views from the Church Body. I wanted to talk about the way a child's diagnosis is perceived by Christian people, the remarks they tend to say based upon their perceptions, and questions these views have brought me. I've written a similar post on this blog, Does God Make Down syndrome, which has been viewed every week for the last 3 years making it my popular. If you missed the post on Key Ministry, here's the start of it with the link to the full post below.

When my daughter was born with Down syndrome and a heart defect 12 years ago, my eyes were opened to how people within the church view health, illness, and disability. I was always in good health, so I never knew the attitudes and beliefs held by some and how they were expelled in and outside a church building.
After my daughter was born, I experienced how Christian people view and treat those with a diagnosis. It seems that I have encountered 3 strong views among people. Some of these have resulted in positive experiences and some negative.

1. My child’s diagnoses were from God.There are some who strongly feel like those with various disabilities, especially those with Intellectual Disabilities, are special angels sent directly from God. People who believe this say things like: God must make so many people with Down syndrome, and He chose you. God gives special children to special parents. God chose you to be her parents, because He knew you could handle it. Having a child like yours is a special blessing from God. Special kids are special blessings.

Keep reading. Click this link. 

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Tuesday, September 25, 2018

The Local Commercial that Bothers Me

"I woke up in the morning with a bad ear ache," a little girl says in a local commercial while distorting all the r sounds. (Sorry-I'm a speech language pathologist.)

The commercial shows the little girl going to a local doctor's clinic for help. It goes through the typical scenes and information that you would expect to see for an advertisement of a local clinic. But, then the mother of the little girl says something that stuck with me.

"There's nothing worse for a parent than a sick child," she says before the closing tag line.
I have a couple of problems with the mother's statement, which I assume was words from a script. First of all, as I have blogged before, I generally have patience for people who say anything that starts with: There's nothing worse than.... (See the post Your Worst Thing) Perspective is everything when talking about what the worse thing is. One's "worst thing" can be considered nothing to someone else. Everyone has a unique life perspective with their own best thing in life and the absolute worst. My viewpoint of the worst thing has changed over the years with different health scares with my daughter. But, most people's worse thing would never be close the scenarios our family has lived through. Still, I have patience with people walking out their own challenges. But, I don't have patience with this commercial.

After I saw the ad a few dozen times over the weeks I asked myself a question. Is the mom's "worst thing" a child with an illness that could be cured by an outpatient clinic? I think I know what the commercial is trying to say, but I don't like the seriousness of her statement in this commercial featuring an ear ache and a local clinic. There are things that are far worse.

I thought about the mothers who have lost children. Certainly, that's worse than any sick child.

My child has been in the ICU several times over the years. I can recall at least 3 times when I knew a child down the hall in ICU was dying. Generally, clergy were present. A flood of people were typically allowed into the patient's room when they are otherwise limited to only 4 visitors at a time. Most, if not all, of the equipment leaves the patient's room, and you know it's not because they are suddenly improving. The social worker is often nearby with tissues. Sometimes, an empty patient room is filled with the family's overflowing visitors eating snacks freely, which again is something usually not encouraged in the ICU. Grieving family members console each other openly in the halls.

Three times I have watched snip-its of these scenes unfold in the ICU for another family. I overheard parts of the patient's story in the parent lounge as family members shared with each other about a horrific accident or the battle with a long, serious health condition. I don't try to listen to their stories, but I hear them when I'm in the lounge eating my meals because my daughter is taking nothing by mouth.

One time, we were the room adjacent to a dying baby. My husband and I drew the curtains in our room and tried to give that family more privacy. When we saw the parents walk out of the hospital one last time with a cart full of belongings and no child, we both wanted to cry even though we didn't know them or their baby. They were experiencing the nightmare ending we were hoping to avoid, and it was too real. Not everyone has a happy ending in ICU.

Having a child in ICU has brought some of the worst moments of my life. However, my child is still here thankfully.

So as I think back to this health clinic commercial, I wish I could change the strong words of the mother. I can think of plenty of lines the ad could have said such as:
It's scary when your child is sick.
Parenting a sick child isn't easy.
As parents, we hope our children are never sick.

Still, we are all on our own journey with our own life experiences. I'll try not to judge the mother character in the commercial. However, if the clinic contacts me for consulting, I'll be happy to help with their next script. 😊

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Tuesday, September 18, 2018

A Small Change at Church Created a Big Problem

Recently, I had a post on Key Ministry about how an ordinary church outing turned chaotic due to a small change in our routine. Here's the first few paragraphs with the link to the whole post below.

How a Small Change at Church Created a Big Problem

My daughter loves going to church. In fact, Jaycee spends part of her Saturday night picking out the right dress to wear the next morning.

“Get your Bible,” I tell her before we leave. Jaycee races to her bedroom and retrieves it quickly.

“Class. Friends,” she signs.

“Yes, you’ll see your friends in class at church,” I tell her.

On this particular Sunday, my daughter and I were both wearing dresses and captured the moment with a picture. With our outfits documented, my kids and I climbed into the car to head to church while my husband left for work.

The drive to church was ordinary as we joyfully sang along to the Christian radio station. I drove down the road to enter the church from the rear parking lot as I normally do. That’s when our problems began.

The back entrance was roped off, so I had to enter another way. The yells started from my daughter, who was mad that I didn’t make the turn she was expecting.

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Tuesday, September 11, 2018

From a Flop Summer to a Fantastic One

The official summer season is coming to an end soon, and I hate to see it go.

Our summer was pretty great this year. We made so many good memories. Some summers are just a flop for us because of medical issues with my daughter but not this year. Here's a sample of what we did.

Since my husband was working in Oklahoma part of the summer, the kids and I met him in Branson for a long weekend. We had fun swimming, watching Dolly's Stampede, playing miniature golf, and doing the normal touristy things. Here we are on a Ferris wheel.

Over summer break, Jaycee competed in our state's Special Olympics for the softball throw. It was a miserably hot time with head indexes in the triple digits. Still, it was great seeing her compete. Last year, she qualified for the state games, but she came down with a respiratory infection a few days before the games. We weren't able to go, and it was disappointing. I'm so glad she was able to compete this year. I love seeing her get to do something that showcases her abilities. Gold medal!

We made the long trip out west to see my husband in Oklahoma a few weeks later. We swam at the campground, went bowling, and explored the area. We were really happy when daddy came home later in the summer. We captured this moment near some buffalo in Oklahoma.

We went camping at a local recreational hot spot for a weekend. We played on a beach, sat outside briefly (really hot summer), and walked trails.
We had lots of easy going days at home too.

I'm sorry to bore you with a list of things we did and vacation photos, but the fact that all of it happened is really nice and really rare.

Last year, the summer was completely different. Jaycee had a respiratory infection that didn't hospitalize her, but it did take some time out of our summer and canceled our Special Olympics plans. She had a surgery at the end of June and recovered from it all the way until August. Most of the kids' summer break revolved around hospitals, medicines, and precautions last year. We felt like we did nothing fun even though we did work a few fun things in during our trips to the hospital for follow up appointments.

There have been other summers that weren't so great either. In 2015, Jaycee got sick in June. She ended up on a ventilator in ICU. That illness was severe and took some recovery time at home for several weeks as she regained her strength. Our vacation plans were canceled. We settled for simple outings at home when she was fully recovered.

We have had other summers that have revolved around surgeries or illnesses or a slew of appointments. They dictate what we do and when we do it. I try to maintain positive attitudes because my daughter being alive is the most important thing, but it's a bummer when plans have to be adjusted or we're locked away in our house in isolation while she recovers. That's why it is so nice when everything works out like it did this year.

So as I reflect back on our summer, I'm thankful. I appreciate the simple things, like making plans and keeping them because she was well. I appreciate the fact that we had freedom to do things we wanted to do and not things we settled on doing because of health issues. The hard times make you appreciate the good ones. I just hope next summer can be this good!
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Tuesday, September 4, 2018

Before the Flu Shot Debate Starts

Flu season brings out many opinions. The only thing most people can agree on is that getting the influenza virus is miserable.

Prevention of the flu is another story.

Fairly soon, flu shots will start to be advertised and given. That's when all the debating will start. To vaccinate or not, that is the question.

There are people who are anti-vaccine when it comes to the flu shot. Some of these people are against vaccines in general, so naturally those people will not run out and get flu shots. But, there are many people who believe in vaccinations for the most part but aren't interested in the influenza shot. To each his own; that's my viewpoint. If you don't want to get the flu shot, I don't care. It doesn't bother me.

What does bother me is the information shared by those against the vaccinations. It's very easy to share things on social media. Not every article is legitimate. To quote President Trump, some of it is, "Fake news!" You can read some of the fake news articles called out on this piece on HuffPost.

I'm not a doctor. I don't know all the ins and outs of the flu vaccine. But when people share things online like "I hope my family members aren't getting flu shots," with an article warning about some aspect of the flu shot, I want to sigh. Some of these articles warn against about future infertility, toxic ingredients, and terrible rare side effects. I have had other adults ask me about flu shots and voice concern over things they have read on Facebook. Fear has become attached to the vaccine because of some of these posts. Some people are very confident in their anti-vaccine opinion. I hope that they have read and researched from more than one source of information before they share. I will admit, I haven't spent hours and hours researching flu shots. I only know one piece of critical information.

I started getting the flu vaccine when my daughter was young. I can't recall when I first vaccinated her for the flu. I am guessing it was age 1 or 2. Her doctors have always stressed the importance of the flu vaccines. Every doctor. Each cardiologist, pulmonologist, ENT, and primary doctor my daughter has seen over her 12 years of life have all asked me repeatedly during flu season if Jaycee was vaccinated. To which I have always said yes. (And yes, I have heard the whole viewpoint that every medical professional is pro-vaccination because it's a money maker.)

For our family, we can't risk getting influenza. Jaycee's two heart conditions, asthma, sleep apnea, and other medical conditions mean that an influenza virus could be dangerous for her. Back in 2011, Jaycee came down with Influenza A. During the illness, it triggered an extremely fast and dangerous heartrate in the 200s and led to the diagnosis of Wolff-Parkinson-White syndrome. It was scary as she had to have medications administered to slow her heart rate down. Even though Jaycee was vaccinated, she still caught the virus. But, that moment showed me how unpredictable the influenza virus could be in Jaycee. Since then, I have never questioned getting the vaccination for both of my children and myself. Even though the shot didn't keep her from getting it, I was glad I had at least tried to protect her from it.

In January this year, influenza hit our community hard. I hoped our flu vaccinations would protect us, but it didn't. My son started showing symptoms before bed one night. The next morning, I had him at the doctor's office when it opened. My intentions were to get Jaycee on the preventative dose of Tamiflu, since he did have the virus. On the drive home from the doctor, my father-in-law called to say that Jaycee's breathing was strange. I was home in a flash, and she was struggling. He had started her emergency medications before I got home, but they weren't helping. I threw on her oxygen and transported her to the emergency room. She spent the next 7 days in the hospital on oxygen, cough assist, and getting suctioned as the virus attacked her lungs. Not a fun week- let me tell you.

Here's what I want to say before the flu shot debate starts. If you don't want to get a flu shot, fine. I don't care. I probably wouldn't mess with it if it were not for my daughter. However, if you share an anti-vaccine article on social media, please make sure it is from a reputable source. If you feel it's good, then watch how you word your post. Sharing good information is helpful. I don't think it's wise to criticize others who choose to vaccinate. There are people like me who have a family member in fragile health who can't afford to take the chance.

While some sit and debate on what they should do for their family, I have no doubts. I hope everyone can make their own decisions on this topic and determine if they should share reasons why they are for or against vaccines in a helpful way.
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