Where do I Fit in the Easter Story

<sup>Easter is a time of reflection in many ways. For me, the story of Easter has several powerful messages and examples of people who demonstrate great faith as well as crushing unbelief. 

Jesus is the focus of Easter. There is redemptive hope found in the actions of Jesus. He's the one who gave his life for all of us born into sin. Jesus embraced the call on his life. He died a gruesome death for the love of us. He is THE story.  

Then there's Peter. We all know what Peter did. Peter told Jesus he would follow him no matter what but ended up denying him three times, as predicted. Some can see how Peter caved under the pressure of the situation around him. Others wonder how Peter could deny Jesus after witnessing a multitude of miracles. Peter is a remarkable a figure and shows how diverse the reactions of the followers of Jesus were.</sup>  

^{Of course, we have to mention Judas being that he was one of the 12 disciples too. Judas saw the miracles of Jesus, yet evil entered his heart somehow. He turned Jesus over to his enemies for money after everything he saw Jesus accomplish. Judas is a reminder that being close to Jesus doesn't mean anything unless we fully commit our lives to him.}

There's more pivotal people that are worth mentioning but for time's sake I will stop there.

As I was reviewing the story of Easter this year, I had to pause and wonder where I fit. Who am I most like in this story?

Then it became clear to me who I have been in the past. I have been chief among the mockers.

Scripture tells us that soldiers mocked Jesus by saying, "If you are the King of the Jews, save Yourself." (Luke 23 NKJV) Other people were recorded saying, "He saved others; let Him save Himself if He is the Christ, the chosen of God."

Those mocking Jesus couldn't understand what was happening. They couldn't comprehend Jesus choosing that path. Sometimes, God's intervention doesn't look like what we picture. God may not move how we anticipate.

When reflecting on Easter, I surmise that I would have been one of those people wondering if Jesus really was God's son, because he was enduring a horrible death. Surely God's goodness would spare his son the pain? Can God's love be found in the middle of such suffering? A grand display of power in the form of suddenly destroying those who were hurting Jesus would have been just as effective, right?

Yes, I would have been one of those hecklers. Perhaps, I would not have openly shouted something to the crowd, but I would have been thinking it. I know this because I have had those thoughts too many times in my life as a parent.

I have stood by my daughter's hospital bed and been bombarded with thoughts such as:
There's no way God could be with us. If God were here, my daughter wouldn't need all these machines and tubes to stay alive. God would spare my daughter of all of this. 

If God cared about my family, we wouldn't be dealing with this situation now. 

Surely all this suffering isn't part of God's plan.

I struggled for years to find God's mercy when my daughter's situation seemed mercilessness. Several surgeries, diagnoses, and health scares meant that I had every question and doubt possible enter my mind. I rarely voiced them aloud but my mind was full of them.

I'm not sure if those mocking Jesus ever realized how wrong they were. However, I realized how wrong I was.

I knew I needed a renewed mind when trying to find God in my daughter's medical situations. Of all the characters in my own storyline, the role of heckler is not doing any good. I need a voice of faith resounding through my situations. I need affirmations and reassurances. I don't need questions. I don't need to be my own worst enemy providing the mocking statements.

Thankfully, I have learned to recognize my doubts. God has given me the grace and ability to go through situations with my daughter without emotionally trying to figure out why they are happening.

As another Easter celebration passes, I thank God that I don't have to be a mocking unbeliever anymore. I know who God is. I know what His love looks like- even in the hospital. I know what His goodness looks like too- even if my daughter is deathly sick. What about you? 

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. 

Just When Is God Good?

God is good. You've heard this, right? It's a common phrase spoken in the church world. I've heard it come from the mouths of many people in a variety of situations.

When a tough situation has an ending that is happy, some are quick to declare that God is good! It's important to recognize God in our victories. He needs to be acknowledged in moments that could have had a much different ending. What about the other moments though? What do we think of God when things don't go our way?

In my 13 years of raising a medically complex child, I have wrestled with this concept of the goodness of God. God is good. God's nature is good because He is love. He never changes. Yet, over the years, I have let many unpleasant circumstances try to slant this truth.

It's extremely difficult to look at your child with a scarred chest after a second heart surgery and declare that God is good. When you hear your child has a rare heart arrhythmia (Wolff-Parkinson-White syndrome) and has a chance of sudden death, you aren't thinking about how wonderful God is. When you find your child in respiratory distress at home causing you to rush into action with medications and oxygen, your immediate reaction is not to say that God is good, especially after this occurs dozens of times. When you are told your child may not survive the septic shock and Acute Respiratory Distress Syndrome as she lays in an ICU bed, God's goodness isn't at the forefront of your thoughts.

All of the scenarios are ones I have lived through as Jaycee's parent. I have had plenty of opportunities to understand the complexity that is the goodness of God. Here's is what I understand: God is good all the time. It's not a cliche; it's a fact.

God's nature is good. That part doesn't change. Even when life is challenging, God's nature remains the same. In my human reasoning, I try to make sense of God through trying times on Earth. But, how can make sense of a Heavenly God when I am trying to view Him through earthly trials? I can't. I must know who and what God is, so I can press on towards the hope of Him.

We can't decide God's nature based upon the good or bad things that happen to us. Our situations change. God doesn't. I had a tendency in the past to look for the goodness of God in Jaycee's illnesses. When things were hard for my child, I felt anger that the goodness of God wasn't around. After all, she was suffering. Goodness surely couldn't mean another surgery or illness or diagnosis or problem. Goodness is health and happy times. Right?

If there's a constant to be found in a chaotic life of raising a child who is medically complex, it is this. God is unchanging. He cares. He loves. He is good. "God is good" is not something said to sound Christian. It is a declaration of a belief of God that you must feel and know deeply and profoundly. You must settle this in your heart and your mind, so that when trials come, you won't be taken down the road of questioning God's nature, existence, and love.

When I sing the chorus of a familiar song, "You are good, good, oh," I sing it from my heart. I sing it with passion. I know God is good. I feel it because of what I have walked through on this Earth. Even when things I face seem terrible, the fact remains that God is good.

I hope you know it too!

How the Prayers for my Child with Down syndrome Have Changed

March 21st is World Down syndrome day (WDSD). (The date 3/21 is significant because those with Down syndrome have 3 copies of the 21st chromosome.) As another WDSD comes around, I can't help but reflect on how my perspective of Down syndrome has changed over the years, especially when it comes to my prayer life.

When my daughter was diagnosed with Down syndrome at birth, I was shocked. I didn't know it was possible for a 25 year old woman to give birth to a baby with Down syndrome. I never expected Down syndrome or a heart defect to be part of my baby's life.

The diagnosis of Down syndrome was portrayed in a negative light by the medical team in the hospital after Jaycee's birth. The doctor pointed out all the "flaws" on her body that indicated Down syndrome. I was told she would have challenges in motor skills, cognition, and her everyday life. The doctor told me I would be caring for her the rest of my life.

Down syndrome seemed overwhelming. The diagnosis was more than I could take. My thoughts regarding Down syndrome were all negative, and I could barely think of anything else. All of the negativity spilled over into my prayer life when it came to Jaycee.

Early on, I prayed for Jaycee to have a miracle. Specifically, I prayed for her to be healed of the effects typically seen from the extra chromosome. I made a list of the common problems with Down syndrome some of which included: Intellectual disability, low muscle tone, thyroid issues, slow metabolism, vision and hearing problems, and delayed development. I called each of them out in prayer and asked God to intervene miraculously.

I prayed and prayed. As the months went on, Jaycee had her first of two heart surgeries followed by oxygen use at home. She was struggling with feedings and motor development. I was getting discouraged. All the while I poured my heart out to God in prayer, it seemed like God had absolutely nothing to say about Jaycee's Down syndrome and her struggles.

One day as I prayed through the list of needs for Jaycee, I felt God ask me something.
"Are you praying these things for her or you?"
The question stopped me. I started praying for healing early on because I felt God would want her to live without issues based upon many stories of healing in the New Testament.

Jaycee gets a kiss from mom before a surgery. 

However, the question forced me to analyze my motives. Why was I really praying? Was I doing it from a place of love for her or was it something else? I came to the conclusion that I was praying for myself more than her. How much easier would things be if therapy wasn't needed, if specialty physicians weren't involved, if she understood like any other child, if her muscles were strong, if medical bills weren't in our lives, and if medicines weren't part of her daily life? These things would make both of our lives easier. Perhaps, I wasn't praying for Jaycee's sake, but my prayers were actually rooted in selfishness and fear of the future found in my own heart.

As I started to adjust my prayer life, God was still overall silent on the topic of Down syndrome. How did I need to pray for her? What was God's heart on this subject?

One day, several years into my parenting of Jaycee, I felt God speak again. As I was lamenting about some challenge related to Down syndrome, God whispered to my heart, "Down syndrome isn't that big of a deal."

What?! I started to tell God why it was a big deal. It was, after all, making Jaycee's development, education, and independence difficult. There were aspects of her life that were challenging for both of us.

It was then that I really found God's heart toward my daughter. God doesn't value life as we do. He doesn't care if someone is athletic, intelligent, artistic, poetic, or verbal. He isn't bothered when milestones aren't met as typically expected either.

Sure, you may think this is your belief system too, but I believe the system of the world is rooted in us far deeper than we may realize. We all want our kids to achieve "normal" things in life (educationally, in relationships, etc.). When it doesn't seem possible because of a diagnosis, it can be hard to face a reality much different from what we expect.

God looks deeper. He looks at our hearts and our spirits. He viewed Jaycee much differently than anyone. I'm sure God was pleased with her joyful and loving nature. God must have loved my child's spirit. I am sure that Jaycee's Down syndrome wasn't really impacting her in God's view. The trials on this earth from the extra chromosome were insignificant in the long run. Her heart was right, and that was most important.

When I got a new revelation of Down syndrome, my perception changed as well as my prayers. I embraced all parts of my daughter, accepted her limits in a healthy way, and prayed less selfishly. I didn't see her as a walking list of needs. I had more grace and patience for her difficulties and less frustrations. I asked God for more wisdom to help her through challenges rather than simply praying for them to end.

Years ago, I was almost in panic mode after I heard the words "Down syndrome." I prayed so many prayers, but I never really asked God what He thought about Down syndrome. I wish I would have asked for that clarity immediately. It would have given me a sense of peace and purpose for both of our lives. Perhaps, I would have been able to see past the challenges and just see her. I wasted so much time focusing on the wrong things. Looking back, I'm embarrassed by those initial emotions, thoughts, and prayers regarding my child's diagnosis. I can be thankful that I have grown as a person and a mother.

In celebration of WDSD, I ask that each of you consider your viewpoint of those with Down syndrome, specifically when it comes to prayer. Do you see them as only someone in need of prayer? Can you look deeper and see the person that God sees?

What Age 13 Is Like for My Daughter with Down Syndrome

It seems like a few years ago, I was cuddling my small baby in her Noah's Ark themed nursery. It doesn't seem like this baby recently blew out candles on her chocolate cake in celebration of her 13th birthday.

When I held Jaycee in my arms years ago, I often tried to picture what her future would be like. I had many concerns and fears back. Now, I'm living that future. There is plenty of fun and personality in our lives, and fear and concern left years ago.

In true teenage fashion, my daughter has taken an interest in all things feminine. A few makeup supplies can into our house at Christmas. In a short amount of time, she has accumulated 5 tubes of lip stick, 4 eye shadow palates, powder, and blush. We had to carve out makeup application time in our morning routine. I don't wear makeup, so Jaycee has developed this interest on her own.

Similarly, Jaycee has decided she needs her nails painted and looking pretty at all times. She owns dozens of nail polishes and enjoys experimenting with different colors.

Jewelry is another interest of Jaycee's. A few months ago, she cried for a ring while we were shopping in Zales. Before we decided to spend hundreds of dollars on a ring, my husband and I purchased a cheap ring to test her responsibility with it. Jaycee has taken superb care of her now 3 rings and several bracelets. The more bling, the better!

Jaycee likes to carry a purse. She has a compact mirror and lip gloss inside of it. She has a wallet with her own money. Inside her purse, you may also find Peppa Pig or Frozen figures. 

When it comes to fashion, Jaycee loves to shop and pick out her own clothes. This is the child who hated shopping for many years much to my frustration. Now, I can't try on clothes without making sure I have something for her to try on as well. She wears mature looking sweaters that I would love to borrow, but she also has shirts with her favorite Disney characters as well. For the most part, I help her choose her outfits for school, since she doesn't yet understand the importance of dressing for weather conditions.

Like any other teen, Jaycee is interested in the phone. While many teens may be calling their friends, Jaycee will ask to call her cousin Gabby or grandma. Due to her limited verbal speech, Facetime is her primary way of communicating. She can sign or gesture to her family members on the phone on Facetime, and they can understand her much better. Texting or social media isn't an option since reading and spelling are both hard for her.

What about boys? Relationships are typically an interest of teenagers, but I can't tell if this is true for Jaycee. She loves everyone. She wants to innocently kiss and hug girls and boys that she likes. Friends and family members are all recipients of her acts of love. I don't see her interested in boys in a romantic way, but I'm not around her at school. Maybe I'm wrong. 

While many teenagers are asserting and gaining their independence. Jaycee is becoming independent too but in a different way. Jaycee is learning to do things on her own that other teens probably mastered years ago. She can shower by herself for the most part, but she needs help washing her hair. She hasn't yet mastered zippers, buttons, or tying her shoes. Our solution has been to avoid these when possible. Of course, she has the occasional teenage moment of slamming her bedroom door in anger to something I did. This rarely happens, but when it does, I feel like the mom of any other teenager. I secretly love it!

In short, Jaycee is much like any other girl turning 13. I'm excited to see her grow up and have typical teenage interests. Her speech, fine, and gross motor delays make her teenage years a bit different, but she is becoming her own young woman.

Years ago, I had a multitude of worries as I rocked baby Jaycee and fed her a bottle. Now, I sit with Jaycee on the couch holding a bottle of nail polish knowing that our future will be fun and bright.

Outside the Hospital Window

My daughter slept in her hospital bed peacefully after enduring several hours that were anything but peaceful. Her bi-pap gave her breath as her chest rose and fell with the air flowing in and out. IV pumps clicked and hummed as they provided fluids and medications. After a very long night and morning, I found myself keeping busy by pacing the floor and doing nonsensical tasks of organizing and reorganizing the few belongings I brought along.

I finally quieted my body down and placed myself on the green couch at the back of my daughter's ICU room. With nothing to do but wait and worry, I looked out the window situated directly behind where I sat.

Looking outside, I observed cars driving along the busy road. I imagined for a second where all those people in the cars were speeding off to. Were they going to work? Were they headed to the gym for exercise? Were they off to buy groceries or finish some other mundane errand?

I wanted to be one of those people for a second. I wanted to be driving to work. I would have loved to have been buying groceries or even running to the pharmacy.

I looked a little farther outside and viewed the park just beyond the main street in front of the hospital. The winter weather had limited the activity in this recreational area, but there were a few people braving the temperatures. They ran along the concrete path or walked their animals in the grass. 

I wanted to be one of those people for a minute. I wanted to be doing something ordinary. I didn't want to be in the hospital with my child again. 

Outside the hospital window, life moved on. It was just another regular day for so many people, but it wasn't for me.

I turned away from the window to view my reality. My daughter was in the ICU again. Another respiratory virus found my daughter causing pneumonia, and her lungs needed an extreme amount of oxygen. Her breathing had improved from hours earlier, but she was still seriously ill, again. Absent from the room was my little boy. He was at school trying to maintain a somewhat normal routine during an abnormal time. Separated by illness again, my son and I would have to communicate on the phone later in the evening and hope that would be enough to get us both through this health crisis.

People outside the window didn't seem to have a care in the world. In contrast, my world seemed upside down. No matter how many times I had been in this place with my daughter, it has never gotten any easier. My heart hurt for my daughter, who has fought many health battles. My heart hurt for my son, who has had his own struggles through all of it. I struggled to process my own feelings and anxiety while maintaining a strong front for my daughter, son, and husband.

There was a great juxtaposition with what I viewed in those few minutes. Outside the hospital window, life was as it was expected to be. Inside that room containing the window, nothing was right.

I took a breath and reminded myself of something. Soon, my daughter will be well again. I'll load her into my vehicle to go home. My van will join the parade of cars that never seems to stop. The hospital will soon be in my rear view mirror as I joyfully depart this town. Yet, I'll leave behind dozens of tired parents sitting on a green couch looking outside their child's hospital window.

They'll wish they were me. They will be hoping they will soon be the ones outside the hospital window. And the cycle will continue.

I Wasn't Built for This

My daughter's oxygen saturation monitor alarms an hour into my sleep. I'm jarred awake and roll over to look at the video baby monitor screen to view what is happening in my daughter's room. I see numbers on the monitor that suggest a problem and stumble in the dark across the hall to my daughter's room.

Over the next couple of hours, I administer emergency medications. I turn on her oxygen. Then I raise her oxygen. I suddenly decide this can't be managed at home. I race around the house grabbing supplies, clothes, and essential items. I call a family member to come watch my son, so I can rush my daughter to the emergency room.

I wasn't built for a life like this.

My daughter struggles to breathe. She is scared as I try to dress her at 2 in the morning to go to the hospital. She whimpers when I tell her we need to leave to go see a doctor. She slowly makes her way outside towards the van. I can tell it is hard for her to breathe and walk in the state she is in. She sits still in the van on the drive wearing a nasal cannula on her face and the monitor on her finger. At the hospital, she cries when she is asked to lay on a hospital bed. She knows where she is, and she isn't happy. As an IV is attempted a few times unsuccessfully and other measures are started, my daughter cries, hits, and reacts to things she can't control. She waits for the ambulance to transport her to a second hospital where an ICU bed is waiting for her.

She wasn't built for a life like this.

My son peacefully sleeps through the chaos of the night. He awakes for school to find his grandfather at the house and not his mom or sister. (Dad is away at work.) He fights back tears as he hears the news of his sister. Somehow, he pulls it together to get dressed for a school day. He tries to go on even though the weight of the unknown with his sister and his mother's absence is heavy on his mind.

He wasn't built for a life like this.

When the job responsibilities of a mom are listed out, very few would mention administering emergency medications, monitoring at home for oxygen use, and caretaking in the hospital dozens of times as possible duties. When a mom pictures her child's life, few would predict so many incidents with hospitals, ambulances, and the medical world. When a mom has more than one child, she doesn't envision one visiting the other in the hospital, Facetime calls from a hospital room, and the pain of being torn in two directions.

None of us were built for this life. Yet, we are all in it. At times, it is extremely hard. This life of watching a loved one repeatedly have illnesses that become so serious is well...serious. Sometimes, it feels like it will crush my heart as a mother. A few times, I have even uttered, "I can't do this anymore," when the pain of her declining health feels heavy on my chest, and I wonder how much more she can endure. Yet, I do and I can.

I wasn't built for a life like this, but then again I am.

I continue on with life. I try to find the silver lining in our situations. Sometimes, I have to search very hard to find it, but I do end up finding it. The hardships of my daughter have forced me to analyze my own feelings, fears, and reactions. Some of them aren't pretty, but I grow and learn from each of them. I appreciate the healthy times in our lives and make the most of moments both small and large.

Many times in my life, I have been asked how I do what I do as a parent of a medically complex child. The answer is simple. I do what I do because it must be done. But if I had to really answer the question, I would have to credit my ability to cope as a testimony to God.

Belief in God helps keep me focused. God gives me strength that I didn't know I had. Prayer gives me an outlet to express my inner thoughts and fears. God gives me hope for a future that may otherwise seem hopeless in a sense that the medical problems aren't going away. God has built me for any problem life throws at us.

Like me, my children are indeed built for the challenges we find in this life. We acknowledge the pain and difficulties but look forward to the joys we have as well. The kids celebrate small victories. They hug when they are reunited back together after an illness separates them. They both find a way to move forward even though there are some arduous moments behind them.

After two recent hospital admissions involving two trips to the emergency room, my head is still spinning trying to process the events of the past couple of weeks. We have all survived the battle again. My daughter's breathing has recovered, and her health is back to her baseline. My son and I have settled back into normal sleeping patterns and anxiety of the situation decreases as each day passes.

There are some messy, hard days in our family, but we carry on. We were made for each other after all. When we dig down deep, we find that are built for exactly these moments with hope, faith, and love carrying us all through.