What I Lost as a Caregiver with School Ending

I didn't know that when I picked my children up from school in Illinois on March 16 that it would be the final time for the school year.

My son, Elijah, is finishing up fifth grade at our dining room table. My daughter, Jaycee, no longer attends her school for the disabled. She too is completing assignments at our dining room table. Along with her classroom work, we're trying to complete activities from her speech, occupational, and physical therapists at home. 

Like many other students, my children missed out on many end of the year activities. Fun things like field trips, spring break plans, and class parties didn't happen this year. My daughter wasn't able to compete in a couple of Special Olympics events. There was no transition for them. One day they were at school like normal; they next they were remote learning at home. Some days, it is easy and fun. Other days, school at home has been miserable and, quite simply, a chore. 

My kids weren't the only ones struggling with their new reality. I missed out on some important end of the year activities myself. Before the school year ends, I make sure I have all my dental, doctor, and hair appointments completed. Finding the time to do these things in the summer is harder when I have to consider who is going to look after my kids. Of course, this year I couldn't schedule appointments to make life easier later. Like everyone else, I'll wait and see when things reopen and hope I can find a time when someone can help me. 

Usually in March, I start mentally preparing for summer break. During the school year, I typically work Monday-Wednesday. That gives me Thursdays and Fridays to run errands, complete projects at home alone, clean the house, and simply have time to myself. Self-care is important for all mothers, but it is especially important for those like me. I love being Jaycee's mom, but I've been care giving for 14 years. Most parents can leave their 14 year old in the house alone while they mow or run an errand. I couldn't think about doing that with Jaycee. Most parents don't need to help their teenager in the shower, cut their meat up for them, or complete a few hours of medical interventions each day. This is my reality that I am more than fine with, but I do need to take care of myself to keep up with the caregiving demands.  

During the last couple of months of the school year, I typically spend time doing things I like while I have the ability to do so. I know for three months in the summer, my time alone is going to be almost nothing. Therefore, I try to schedule a massage in May as a way to relax. I grab a lunch at a local restaurant a few times, shop at Kohl's, and enjoy a movie at home in peace and quiet. In other words, I prepare for the three months of nonstop caregiving. 

This year, there was no time for preparation. The summer schedule of caregiving started in March. I had no time to decompress or relax. Things happened quickly and right in the middle of added stressors of job changes and home school. I know most other parents found themselves in a very similar situation too. 

School is much more than a place of academics for families like mine. School provides respite. It allows me time off from being a caregiver. It gives me freedom to do things like shop for groceries. (Pre-COVID-19, there were some grocery trips that go well with Jaycee. Other trips, I felt rushed and anxious when Jaycee's fatigue caused her to sit down on the germy floor each time I stopped to get an item.) 

Life is complicated right now for many people. Fortunately, there isn't much to do or many places to go right now in Illinois. Still, my caregiving is in full swing earlier than usual. I'm praying this fall we aren't in this same predicament for a number of reasons! 

I hope this post isn't taken as a complaint. It's simply an informative piece for those of you who don't have children with special or medical needs. You may not realize what school means to families like mine. School being abruptly closed provides challenges for my children and myself. We were all thrown into this situation without warning. So far, we are adjusting and carrying on. 

This morning, I watched my children have a lightsaber fight in full costumes. We were all smiling and laughing. Parts of this new schedule have been hard, but I think we'll be stronger at the end of it. 

What Helped My Foul Mood

I was in a foul mood when I woke up.

After the morning rush of administering medications, making my son's lunch, and getting everyone dressed, we were ready to load into my van.

I told my daughter to sit in the back seat, but she ignored my words. She went straight to the front passenger seat. Jaycee can legally ride in the front. However, she demands I take objects like a cup or my phone without regard to the fact that I am occupied driving. I didn't want to be distracted today as we were driving two hours to the hospital for an appointment. Jaycee continued to make her way to the front and buckle up, not pausing at all when I told her to stop.

My voice had a sharpness to it when I told her that she needed to move again. I could see I wasn't going to win this argument with her already buckled up, so I resigned and let her stay. As I pulled out of the driveway to start our long day, I felt frazzled. My patience was thin, and it wasn't even 8 am.

Then, I recognized what was really happening.

The hospital brings out some ugly parts of me. I have associated the hospital with pain, fear, trauma, and emergencies. I have had good experiences with the medical profession but many negative ones. I have felt every emotion in a hospital.

When there's an ordinary appointment for Jaycee, my brain has a difficult time shutting off old negativities and emotions. Just thinking about going to the place filled with memories of surgeries, hospital admissions, and scares with my daughter puts me on edge.

I took a breath. I noticed the tension in my shoulders and arms. With great effort, I tried to relax them. I put on some music. I said an inner prayer and began the familiar route to the hospital.

Once there, Jaycee willingly exited the van, and I was relieved. Typically, she refuses to get out because she recognizes the hospital. Once we arrived at the parking garage elevators, she refused to board them and said, "Uh-uh." By the time a second elevator arrived, Jaycee was ready to board but then refused to leave it a few minutes later. The promise of lunch after we were done helped move her forward.

The meeting with the new specialist proved to be informative and helpful. But, there were the same old annoyances that come with any appointment. There was the handing over of the insurance cards and going over our demographics, even though I reviewed this information at this hospital two weeks prior. I dutifully provided Jaycee's list of medications for what must have been the 5,000th time in my life. These things must be done, but the repetition of it all can irritate me.

I was in a foul mood indeed.

We walked to a nearby restaurant for lunch between appointments. We have just recently started having some nice weather. It felt good to be outside without a jacket. I saw some flowers in a bed providing beautiful color to an area surrounded by grey buildings. I could have easily walked past those flowers because I was in the hospital area where nothing "good" could be appreciated. But, I stopped. I told Jaycee to look at the flowers.

"What's your favorite color? Yellow or red?" I asked.

Jaycee responded with sign/words, "Red. Like my shirt."

"I like the red ones too. Let's take a picture."

We snapped a few pictures, and I tried to snap out of my foul mood. When I am feeling discouraged and irritated with the medical situations in our life I can't control, I try to focus on the good. I made myself list some positives:

Jaycee is walking today! We normally would have had to use her wheelchair for all of this walking, but the progress she has made from outpatient physical therapy has done wonders. Jaycee is walking this distance to the restaurant! 

We have specialists available to see our child and help with her medical problems.

My van has faithfully made another trip to the hospital. 

I have the ability to pay for my daughter's medicines and supplies we'll be picking up later today. 


As long as I have been on this journey with my daughter, I still make mistakes. I let negativity get the best of me at times. I can get into foul moods even though I really know how blessed I am. I am human. That's the problem. I need to be more spirit-filled and allow God to work in me more.

I'll have another chance to get it right in a few weeks when we go back for another appointment. I will be sure to stop and smell the flowers again. 

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.”

To read the full post, click here. 

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!

Me and My Ugly Heart

My child has never been healthy, well not by most people's definition anyway.

She was born with Down syndrome, which by itself did not give Jaycee poor health. Her congenital heart defect did though. Jaycee went into congestive heart failure a few days after birth. I hoped early on that once her heart surgery was performed that her life would not revolve around the medical establishment. But that's not what happened. 

Asthma became an issue when she was a baby and continues to be a problem today. (No, she hasn't outgrown it despite kind-hearted people assuring me that she would.) Then came obstructive sleep apnea, GERD, and a list of other things that I won't go into detail about. These things have made surgeries and hospital admissions a regular part of her life. 

There has always been medicine in the cabinet for her to use daily.

One piece of medical equipment when she was a baby has grown into 4. 

Home oxygen has been on stand-by in our home for years. 

One hundred minutes of each and every day is devoted to Jaycee's airway clearance and medicine regime for the past 4 years. 

These experiences have made me appreciate the small things in life. They have made me feel blessed by little victories. They have given me compassion and understanding. They have given me a unique viewpoint and perspective on life, which I appreciate. 

There are times, however, when I see my experiences have done something else. 

They can allow my heart to grow hard and ugly.

A few years ago, there was a story about a teenager who died in a freak and unfortunate parasailing accident. The first day the story was on the news I thought it was sad. The second, third, and fourth day the national news ran this story, I started to get mad. I thought: Children die everyday in a hospital. Those parents don't get to tell the world about their amazing children. No national attention is given to them when they die. The parents of this girl took a risk letting her do this activity, and unfortunately, it ended badly for them. The parents probably had several good years with their healthy child before the accident; there are many parents who would have given anything to have a healthy child for so many years. 

The more I saw the story, the more aggravated I got. That was really Christian of me, right? That's when God would whisper to me...watch your heart! Behind the story was a hurting mother who didn't deserve what happened to her child. I had some very strong emotions over this story, and they weren't good. They revealed something deep inside of me that was rooted in my experiences with my medically complex child.

I learned that jealousy can rear it's ugly head in strange ways when I hear things like this. Along with it comes judgment as I decide who "really" is getting the short straw. That's terrible of me!

I have opportunities to share my love with others, but my heart reveals more ungodly feelings. In my work, I meet many parents of children with all sorts of histories and problems. Once in awhile, I will talk with a parent who tells me, "I took my child to the ER last weekend. It was the absolute worse thing. She had to have an IV for three hours before we could go home. It was so terrible."

I let the parent talk and express her worries. I say a kind word or two. In my head, I'm thinking: Really? Your child wasn't even admitted to the hospital. Your child only needed an IV for a few hours. Try being in the hospital for weeks lady. 

Of course, I don't say those things. That would be mean and unprofessional. I hold my tongue but my inner dialogue is going crazy. And I hear God whisper again...watch your heart! This mother had her first experience with the medical system. She was scared, and I should understand that more than anyone.

Then there's good ol' social media. When I read a post from a worried parent asking for prayers for their feverish child, I think to myself: Your child will be fine. They aren't even in the hospital. I rarely pray for these posts. What does that say about my heart? I don't even need God to point that one out to me. I'm wrong.

Please don't think that every day I am sitting around getting angry with people all the time. I have times when I get very worked up and off track. I am human, and I have struggles. I feel things that show my heart is not the reflection of God's. I have work to do. 

Sometimes, I have to remind myself that my experiences can cloud my viewpoint. I compare situations, make judgements about people's feelings and experiences, and decide who is worth my time and prayers. I let stories in the media keep me from seeing the deeper picture. That's so far off from God's heart. He loves people. He wants to help the hurting and meet people where they are. I should be doing the same. I don't want my heart to be ugly. I want it to be like God's.

I have to be vigilant to not let my life experiences make me bitter, jealous, and cold. I, of all people, should know how to minister compassion, grace, and love to others. I know what it's like to be a scared or hurting mother. I hope I can do better. So, I will caution people that are like me. If you have been through a tragedy, a hardship, or trauma, you too may be at risk for developing an ugly heart. Don't let your experiences keep you from reaching out to others who need some support. 

For more on this topic read Your Worst Thing.

I Don't want to Waste the Days This Year

The beginning of a new year offers hope and possibilities.

Like everyone else, I dream big dreams at the beginning of the year. I declare I'll lose weight and stop stressing over things. Then my daughter Jaycee goes into the hospital, and I stress eat. Yep, I break two of my rules simultaneously.

At some point every year, life gets chaotic, and things just seem to go into survival mode for weeks. Then it always happens. I realize those goals I had in my head for the year just aren't going to happen. I quit or resign or maybe surrender.

As I have thought over the past few weeks about what I should focus on for 2018, I have been torn. This life as a parent of a child with complex medical needs can make life unpredictable. I'm tired of making the same resolutions and coming up short. Therefore, I've been reflecting in prayer on what I can actually change in 2018.

Then, the answer came to me. 

I realized that I am quick to declare some days as wasted. It's those days that I spend all day driving my daughter to the hospital hours from my home, sit an unfair amount of time in the waiting room, recite my daughter's medications to the nurse, and then rejoice when the doctor finally makes his or her appearance for a few minutes. Nothing at home gets done. I don't seem to accomplish much with these specialty appointments. At night, I will literally tell my husband, "Today was a complete waste of time."

I have other wasted days too. These are the ones that I spend in the hospital when my daughter is admitted. Don't get me wrong; I want to be with my daughter when she's in the hospital. But there's a part of me that gets frustrated that I can't do anything in life that needs done. Responsibilities at home are dropped suddenly. I can't work at my job. Anything in my schedule gets canceled. It sort of feels like that time in the hospital steals precious time and days from all of us. They feel wasted. 

I went through my calendar for 2017 and found roughly 36 days that were either full days of driving to and from specialty appointments at a hospital hours from home or sitting helplessly in a hospital next to Jaycee during an illness or for a surgery. If I consider all of those days "wasted," then I lost over a month of our year. Yikes!

This is my challenge for the year. I don't want to consider any day wasted.

The thing is that I'm still going to have days driving Jaycee around to the doctor this year. There is also a possibility that I will sit in a hospital with my sick child. Yet, I'll remember something important. These days aren't wasted. In fact, they are extremely important.

I am caring for my child. I am doing something worthwhile. I will see these days for what they are: I'm doing my job as a mother. That's not a wasted day! That's one of my purposes in life. With that in mind, I bet I'll have a better attitude and can settle my busy mind down to focus on the important work that I'm doing that day. Because all of it is important!

After all, singing Disney songs with my daughter on the way to the doctor isn't a wasted activity. I just have to look at the huge smile on her face to know that!

So here's to enjoying and appreciating every day in 2018 with NO days wasted!

My 3-21 Message

Sometimes, it seems like I have had the same conversations with people over and over again regarding my daughter with Down syndrome. Because of my experiences with her, I have learned how much people don’t understand about Down syndrome and people with intellectual disabilities. Sometimes, this leads to me feeling extremely frustrated because I am her mom, friend, and advocate. But, I need to remember one important thing: I once was one of these people who didn’t understand.

Before Jaycee, I thought, like many other people, that only older mothers gave birth to babies with Down syndrome. I was 25 years old when I had Jaycee. I looked at the doctor and asked, “How did this happen?” The doctor explained to me that the chances of Down syndrome occurring increases with maternal age, but it can happen to any pregnant woman for no reason at all. Since having Jaycee, I have repeated this explanation to people who wonder what went wrong for me to give birth to a child with Down syndrome.

Before Jaycee, I felt pity for children with Down syndrome. I saw their trouble learning to speak and their difficulty picking up other developmental skills as sad. I felt sorry for them for wearing diapers past the typical age. I called these children “poor thing” when I saw them struggling with a simple task. Then I had Jaycee. I have witnessed her struggles, but I also seen many, many successes. She isn’t someone to pity. She is someone to be proud of. She works extremely hard to learn new things and doesn’t give up. Jaycee’s shortcomings are not the center of our lives, and I have learned to encourage growth in her stronger areas. I feel happiness when Jaycee makes a joke on her communication device or through sign language. Jaycee doesn’t seem to feel sad about her life, so why should I?

Before having Jaycee, I thought all life was valuable. This is the one thing that hasn’t changed, but I have received more clarity. Jaycee’s life is not important because of what she can do. Her life is important because of who she is. She is a sweet girl, a daughter, a sister, and cousin bringing love to our family. She is a fighter, surviving two open heart surgeries, two heart ablations, and multiple hospital admissions. She loves music, dancing, pizza, being with friends, and the color green. She has thoughts, opinions, and emotions. She is a human being whose life is no more valuable than mine just because I can speak, graduate college, and hold a job.

As we celebrate World Down syndrome day on March 21^st, I am reminded of the work advocates have to keep doing for people with Down syndrome. Sometimes, it feels overwhelming to address preconceived notions and to keep educating the public. I am reminded that people’s minds and attitudes can change, because I know mine did. If only every person in the world could meet Jaycee, then they too would understand.

Groundhog Day for Caregivers

-Do the laundry
-Do Jaycee's medications (morning and night).
-See my speech therapy clients.
-Make dinner.
-Pick up the house.
-Do some writing.
-Do housework.
-Help the kids with their homework.

Sometimes, I feel like I'm doing the same thing every day. And then I think of Groundhog Day.

When I was a teenager, I remember my dad enthusiastically loving the movie Groundhog Day with Bill Murray. He loved the message and symbolism in the movie as Bill's character relived the same day over and over and over again. His character experienced all sorts of emotions as he experienced the same day repeated. Eventually, he learns to embrace the life he has been given.

All these years later, the message of that movie applies to me. I have many tasks to do everyday as a wife and a mother. Being a caregiver to a child with special and complex medical needs requires more from me day after day.

The laundry never stops.
Jaycee's medications need to be done twice daily.
Jaycee's bi-pap has to be turned on nightly.
The house won't magically stay picked up.
My to-do list is rarely completed.

One day recently, I felt distressed as I finished up Jaycee's evening medication run, which consists of inhalers, a nebulizer treatment, and 20 minutes of airway clearance. The medications were done for the day but tomorrow she and I would be at it again.

Sometimes, it feels like it will never stop.

Being a caregiver is a continual lesson in serving someone other than yourself. It requires regular attitude checks. It gives opportunity for the most rewarding and the most draining moments.

There are times when I have to pray for my attitude. I don't want to waste time dreading tomorrow because it's full of similar tasks that I just finished today.

I want to embrace the day I have been given. So, I pray. I ask God to help me. I ask Him to help me look only at today without being overwhelmed.

It may be Groundhog Day today, but tomorrow is a brand new day for me! And that is something to look forward to!

Life After a Near Miss

About 1.5 years ago, Jaycee was fighting for her life.

It started in September 2013. (I blogged during that time, so if you want to know what I was thinking and experiencing, look up those dates on here.) I took Jaycee to the emergency room for breathing difficulties. She had already been admitted in June, July, and August that year already for breathing issues. So, Jaycee was on a bad streak. The emergency room led to the Pediatric Intensive Care Unit (PICU).

First, she was diagnosed with rhinovirus, which is basically a cold virus, and pneumonia requiring oxygen support. Then without warning, her blood pressure dropped. That was beginning of a 4 week nightmare for us. Over time, we learned that septic shock, acute respiratory distress syndrome (ARDS), and a cyst in her lung all contributed to her critical condition.

Jaycee spent three weeks on a ventilator which also meant she was sedated during that time. There were brief moments when Jaycee came to, but for weeks we watched her sleep. She was fed through a NG tube. Therapists came to move her arms and legs to help keep some muscle tone while she slept.

Things were touchy for weeks. Her blood pressure would be too low; other times it would be too high. Her oxygen saturations and amount of ventilator support was changing often.

There were many scary moments. Moments that caused me cry uncontrollably in front of other parents in  hospital hallways or in the family lounges, which is something I can normally hold inside until I'm alone in a hotel room or bathroom. The moment the doctors gave me the "we are doing our best but she may not make it" speech, offering a clergy and to call family in for us will stay with me forever.

Have I made the point that it was a bad situation?

But Jaycee miraculously recovered, and it was so amazing. We felt our prayers were answered because we did pray and pray for her to recover.

Jaycee left the hospital without any oxygen support but on a lot of medications and with extremely weakened muscles. Jaycee came home wheelchair bound unable to sit up unsupported let alone walk. My husband and a few friends built a temporary wheelchair ramp on to the house. Due to her weakness, Jaycee slept with her mattress on the floor since she couldn't get into her bed, had to have sponge baths, couldn't attend school full time for a few months, and did a couple of months of outpatient rehabilitation. The recovery was a family effort, and it did take almost 10 months for Jaycee to fully recover and get every little skill back.

Having a child nearly die changes your life and attitude as a mother. It is a wake up call as you realize that there is no guarantee for the future. As a result, I have changed. How can you go through something like that and not be changed?

Here's some things about myself that have changed since Jaycee's near miss:

• Saturdays are more relaxing. I always felt bad about allowing Jaycee watch movies all day (her favorite activity), so I made sure Jaycee painted or played with play-doh instead. I ruined her poor Saturday by making her do kid activities that she liked but didn't love. Now, I ask her if she wants to do it. If she says no, then I don't make her do it. I let her do what she wants which usually involves hours of movies.
• I like to make strong memories. It's not that I didn't try before but I'm more conscious of some things. If an opportunity comes up, my husband and I consider how quickly it will come up again and how enjoyable it will be for Jaycee. Like, we made sure Jaycee saw the ocean when we were on her Make-A-Wish trip. We purchased a camper last year in hopes that we can start to make new family memories too.
• There's just some things I don't care about anymore. I don't care how many sight words Jaycee knows or how far she can count. Don't get me wrong, I totally celebrate when she learns something new in school. But I don't sweat it anymore if she can't learn something. Jaycee's health and happiness are way more of a concern of mine than her educational status. (Sorry teachers!)
• I have to take more time out for myself. Since Jaycee's illness, twice daily airway clearance was added. Then more daily breathing treatments were added. Shoe orthotics were needed due to her muscle tone change affecting her feet. Then weekly bleach baths were necessary to combat a staph infection that will most likely never go away. The number of specialists Jaycee sees has increased by three, which means more trips to doctors. You get the idea; her care needs have always been high but the list has grown longer since that major illness. This means I really have to help myself. If I'm tired, I try to find a way to get extra rest. If Jaycee is at school, I try to carve out a few minutes of time at home with no chores for me to relax. Honestly, relaxing is hard for me when I have so many responsibilities but it's necessary for me to stay on top of everything.   

There are other things have happened as a result of her near miss. We felt strongly about getting Jaycee baptized, which happened last fall. We took in a stray cat to allow the kids to have their first pet. That cat had kittens allowing us to see Jaycee experience that too.

Each day with Jaycee feels like a gift. We feel so fortunate that God helped her pull through that illness and that she is still here being a part of our family!

How Toddlers & Tiaras Changed My Life

I admit it. I have watched the show Toddlers and Tiaras on TLC long ago when I couldn't find anything else to watch on television. If you haven't seen the show, it features toddler and preschool age children doing beauty pageants. Moms are a big part of the show demonstrating how they prepare the child for the contests.

The money and energy the moms spent on these children! Living rooms were transformed into practice stages as the moms coached their children for the big day. I was surprised when I watched mothers give their small children sugar and soda so their tired child could have energy on the stage to perform. I shook my head when moms said their children loved the pageants and the pageants were teaching them valuable life skills when clearly the pageants seemed to fulfill something in the mother too. And if the child didn't place well in the competition or made a mistake, then the mom was mad.

As I watch the small children getting spray tans, putting in false teeth, getting beauty treatments, and other madness I declared, "Even if I did have a child who could do pageants, I would never subject them to such a thing!!"

And then it happened...a God moment....when you learn something about yourself out of no where. I felt God tell me that I was indeed that parent.

"How?" I asked. Jaycee isn't in pageants or any kind of competitions.

Then clarity: Many times, I have subjected Jaycee to private therapy for additional physical or occupational therapy to address her delays related to her Down syndrome and low muscle. I told myself it was for Jaycee's betterment. But, it could be argued that it was for my benefit too. Let's face it, if she learned a new skill it would ultimately help me as well. For instance, one year I took her to private occupational therapy for months driving an hour one way so my 3 year old could learn to feed herself. Her fine motor skills were a struggle. Feeding herself would be good for her but I could also finally eat with Jaycee at the same time.

There were things Jaycee liked in private therapy but there were certainly things she didn't like. If she had a good day in therapy, I bragged on her. If it was a struggle, I would sometimes get mad that I had wasted time and money for her to do this all for nothing. Yikes! Maybe I wasn't a pageant mom but instead I was a crazy therapy mom!

I would practice the assigned therapy homework with Jaycee during the week cluttering my house with balls, a trampoline, and other equipment. I begged her to do these exercises and drove us both crazy as I tried to motivate her to do things that would help improve her life. Gosh! I was the person I said I wouldn't be!

What a reality check from this reality show!

The past few years I have looked at possible extracurricular activities through these questions:
-Will Jaycee truly enjoy it?
-What is my motivation for doing this?
-What this bring joy or stress to our relationship?

In the end, this show reminded me of the mom I wanted to be.

My Attitude Adjustment

A few years ago, I had one word to sum up how I felt being Jaycee's caregiver.   That word was: WORK!

It was a hard time for me as I struggled to find balance between everything I had to do to care for Jaycee. Just going out in public with her took so much concentration and thought. One second of letting go of her hand to pull the car keys out of my pocket would result in her running off.

Then there was the bed wetting due to her sleep apnea. She went through a long span where her night diaper wasn't holding everything. She would wet the bed sheets nearly every night. I would walk in her room in the morning and be so upset if I had to wash her sheets, dry her mattress, and clean her up. I don't know why I had such a bad reaction- maybe because I'm not a morning person. It just started my day off wrong.

There were other challenges too like keeping up with her therapies and medicines but those were the two main issues.

I was struggling at this time. I felt overworked.

One Sunday, I went forward for prayer for Jaycee's running off. I asked for wisdom to know how to handle her and for her to understand the dangers I was trying to teach her. The guy prayed with me for awhile and then he asked if I dealt with fear and panic while taking Jaycee out. The answer was yes, especially when I was chasing her through a busy parking lot. Then he started praying for me and encouraging me to fight off those feelings.

The prayer was great. When I had time to think though, I told God: "I know that I shouldn't be fearful but this would be pretty simple if Jaycee would just listen to me and not run off!!!" In other words, if Jaycee could just change in some areas, I wouldn't be as stressed and tired and fearful.

But, it seemed that God would only address me and my reactions instead of performing a "miracle" with Jaycee and the problem areas. I kept muddling through. Trying to unsuccessfully to maintain a good attitude.

Then one Sunday, there was another opportunity at church to learn and grow. I don't remember the message specifically but I do remember what God spoke to me during it. Basically, I realized that my problems weren't Jaycee's behaviors....My problems were ME!!

It was my attitude that stunk. It was my reactions to the situations that were awful. And I had never really thought about the bed wetting from Jaycee's perspective. I'm sure she didn't enjoy it either.

I started working on myself, my reactions, my emotions, and my thoughts. I tried to keep them in check. I stopped being "let down" that she still wasn't doing what I wanted her to be able to do. I just tried to accept things as they were for now and work on myself.

Over time (not instantly), my attitude changed. I didn't see my role as her mother as work. It changed. I started doing things out of love again and didn't feel so burnt out. And I was grateful for that.


Philippians 2:3-4  Do nothing from selfishness or empty conceit, but with humility of mind regard one another as more important than yourselves, do not merely look out for your own personal interests, but also for the interests of others.  NASB

The Person Project

About 2 years ago, I was trying to get to a better place in my life. My attitude was negative. I had been through so much with Jaycee's health that my main objective was to make it through each day without having a crying fit or crazy thoughts.  I was going through the motions of a Christian but wasn't feeling any tremendous spiritual feelings. I couldn't pray very well for other people because all the prayers I could muster up were about my family. There were times when someone would share a sad situation requesting prayer and I didn't even want to hear about it. I couldn't take on anyone else's burdens and pain. I knew it was the sign of a wrong attitude but I didn't know how to change it.

I was praying about how to change my attitude. Then I got my assignment that I have been doing ever since. I would have one person each week to do something for. It was my "person" for the week  to show some little piece of God's love, heart, or kindness. Every week since then, I have had a person that I have done just that. Sometimes it was a family member, friend, or someone I haven't spoken to in awhile. A few times, it was my husband. Sometimes, it was a stranger.

Most of the time, the "person" is clearly brought to mind either just out of the clear blue or sometimes in prayer. There have been times when a person discussed a situation in their lives that led me to the realization that they were the "person." There have been only a few times when it's the end of the week and I'm trying to think of someone or something to do.

I have done a variety of things over the past two years. Mostly, it's been a card, phone call, or email to someone to share a word of encouragement. Some nice notes, I sent anonymously. I have brought meals to those recovering from an illness or going through chemo. I have sent money or gift cards to people. Once I read about a fund being started for a family who lost everything in a fire. I didn't know these people but the fund kept coming into my mind. I realized God was trying to tell me something. If I have something I no longer needed (like my kids' clothes or toys), I would ask God if anyone needed them. For my husband, I have made him a favorite dessert that I normally wouldn't make or bought him a small gift for no reason. One time, I sent my 5 year old niece pictures of herself playing t-ball in the mail. She enjoyed getting mail.

Once, before my son and I left to eat at a restaurant, I knew I wanted our waitress to be my "person." I was going to leave the waitress a large tip--it was large given that my meal was less than $10. Before I went in, I asked God to seat me in the right section of the waitress who needed it. Nothing magical happened during that meal. But I did what I thought I needed to do. The tip was a sign to the waitress because no one would leave a tip that is larger than the bill.

In short, some things were large and some were small. I only write about these experiences so that you can have an idea of what I did. I'm not trying to brag. I was only being obedient.

The point of this assignment was to get me thinking beyond myself. When I get so wrapped up in my own problems and life, it's a very selfish way to live. There are people out there needing love, a connection to another person, and encouragement. If we are self focused, we miss opportunities to help others. Jesus told us to love God and love others. This assignment allowed me to do both. My attitude has changed and so has my prayer life. Maybe someone reading this will be inspired too! Go ahead and find your person!

The Results of a Challenge

While Jaycee was sick last week, I had time to do a lot of reading. The Girl in the Green Sweater ended up being a quick read for me. (The movie In Darkness is based upon this book.) The story is written by a woman who survived the Holocaust as a child with her family & other individuals by living in the sewer for 14 months. The conditions were...well you have to read the book. But, the attitude of the writer was what impressed me the most. They experienced such disrespect and hatred for their faith. Her description of her attitude towards their experiences years later left me speechless.

As I read the book, I kept imagining how I would have responded in that situation. I can't imagine it nor do I have any experiences to even remotely compare to it. I thought about things I have went through in the past 7 years with Jaycee: the shock of her diagnoses, surgeries, illnesses, feeling uncertain about her future, battles with professionals regarding her care, etc. These experiences have resulted in me struggling with depression, anxiety, social withdrawal, and confusion. I have questioned the purpose of my life and my daughter's life. I have questioned my faith and whether or not my prayers were effective. I have wondered where God was when my child was seriously ill.

So as I read this book and compared her reactions to her situation to my own, I felt so embarrassed. This woman survived unthinkable living conditions and in the end did not become a bitter, angry, or hateful person for what she suffered. I cannot say that about myself.

Looking back on my experiences, it was such a waste of time and energy for me to be so upset about a baby and later a child who has access to great medical and educational assistance in America. I can't believe I allowed myself to get so beat down just because my life and my child's life took an unexpected turn into the world of special needs with pit stops into hospitals. I struggled for years with how to make sense of what was happening to us. Thankfully, I'm in a better place now mentally, emotionally, and spiritually.

But, still it makes me wonder how a sour attitude or bad perspective takes root? How do some people go through something totally horrible but maintain a good attitude?

I don't have all the answers to the questions. I can only challenge myself to live with more gratitude and happiness and to face situations with a can-do attitude. To live with the principle that God loves me and any bad in my life doesn't come from him; therefore I won't blame Him for those bad things. To challenge myself to see good around me even when it's so clouded up that it's hard to see.

What Pro-life Should Mean

I'm a firm believer that every baby has a right to life. I know there are many that share this belief too. This is not a post to convert people to become pro-life. This is a post to challenge people who are already pro-life. 

When you believe that abortion is wrong, then you believe that every child born with all sorts of medical and developmental challenges should be given a chance at life. I believe this. I believe the world we live in is full of diseases and conditions that God never intended for anyone to have. Yet, the world is full of evil and bad things because the world is not heaven-it's not perfect. Perfect souls are born in bodies that are imperfect. Regardless of your thoughts on this subject, let's just talk about what happens after a pro-life decision is made after a prenatal diagnosis. Then what....

Raising children with special needs (or special purpose as I call it) is difficult. Outsiders do not often know how to support these families. When my daughter was born with Down syndrome and a heart defect, I got more "I'm sorry" statements then "congratulations." We had a few people literally cry with sadness while seeing our baby for the first time. The attitude of most Americans is basically-anything outside the realm of typical is considered undesirable.

It's hard to know what to say and do in situations when a disability is involved. But I wonder how many people are pro-life champions but go on to look at babies and people with disabilities with wrong attitudes. I think if we truly believed every life is worth something and is a blessing, we would stop saying things like:
-I'm sorry your baby was born with ________.
-I don't care what gender our baby is as long as it's healthy.
-Maybe you miscarried your baby because something was wrong. You wouldn't want that would you?
-Maybe your miscarriage was actually a good thing in disguise.

Instead we would say things like:
-I know it's going to be hard because your baby was born with ____ but your baby is a gift. I'm here to help you.
-Congratulations on your baby.
-I'm blessed to be pregnant and blessed to have any child.
-I'm sorry you had a miscarriage and your baby's life ended abruptly.  How can I help you?

Maybe if people were truly pro-life, they wouldn't stare at people with disabilities. They would teach their children to respect and value all people. They would make an effort to reach out to families who are raising children with disabilities. People in church would be more willing to accommodate children with disabilities even if it's not convenient.