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?

Reading After A Diagnosis: A Cautionary Tale

Almost one year ago, my son was diagnosed with Ehlers-Danlos syndrome (EDS). It was a diagnosis that came after a few years of questions and unexplainable issues. In a way, the diagnosis was a relief after getting no answers for so long. During my son's initial diagnostic appointment, the genetics doctor gave me a few book suggestions that several families have found beneficial. I scanned through the list eager to find something to read. 

Within a week, I purchased one of the books, Joint Hypermobility Handbook. I started reading the book shortly after receiving it. A year later, I still haven't finished the book. In all that time, I have made it to page 150 of 220. Before you remark on my slow reading, I want to clarify that I have read several books in the past year on my Kindle. I have simply chosen to take my time with this book. Even though I was eager, I wanted to keep my sanity. 

You see, I've been through a diagnosis before. Nearly 12 years ago my daughter was born and subsequently diagnosed with Down syndrome. Within a month of her diagnosis, I had a stack of information and books. I devoured them like I needed them to survive. A fellow parent advised me to take Babies with Down syndrome: A New Parent's Guide in chunks and reference it when needed. I didn't listen. I read every word in that book. And.....it made me so very fearful. 

As I have written before, my daughter's diagnosis at birth seemed to trigger more emotions and fears for me compared to my son's. (See my post Diagnosed: Birth VS Childhood) I suppose I took in all that information about Down syndrome because I wanted to get a sense of my daughter's future, my future, and our future together. She was so young and tiny; there were so many unknowns. I read everything to understand my newborn but also to try to see the unforeseeable future. 

The new parent's guide book is lovely, and I don't want to sound like I'm bashing it. It has basic information for a new parent that is helpful. I fully support new parents reading this book- just not the way I did. I didn't use it as a reference when issues came up or to research certain topics. I read it cover to cover, and I walked away feeling very overwhelmed by all the possible things that my daughter may face. 

Celiac Disease? Atlantoaxial instability? Sleep apnea? Those sounded scary. Leukemia occurring 10-30 times more often in children like mine. What?!? Thyroid issues? Late toilet training. How long will Jaycee be in diapers? Therapy. Special education. IEPs. Yikes! It was ALL too much to take in at once. 

The book scared me. Every possible thing that could occur with someone with Down syndrome was listed. Of course not every baby would end up with all the problems in the book, but I didn't know what was in store for Jaycee. In the state I was in, which was a post-pregnancy hormonal driven state, I was not prepared for this information. 

I look back now and wonder what I was thinking. Why didn't I just put the book down? It was just a book of possibilities and basic information, not firm plans for Jaycee. The book sparked a ton of fear in me, so I recognized what was happening last year with a different book. 

I was smarter for child number two and his diagnosis. I started reading the EDS hypermobility book. There were "ah-ha" moments. "Oh that's why he does that," or "I didn't know that issue was related to his EDS." These parts were helpful to understand my son. 

But then came one too many bits of information that left me feeling unnerved. I felt it rise up in me again. The fear of the unknown for my son and the list of possibilities. Starting with...Pain that affects a person's ability to do certain jobs as an adult and requires several medications to control.

After that section, the reading stopped for awhile. I had to digest that and mourn my son's future with pain (or predicted pain). Then came sections on heart palpitations and POTS... After my daughter's heart problems in the past, this one kept me up for a few nights. I didn't want to think about my son having heart issues too! That led to a very long pause in the reading again, which was followed by a serious internal debate on if I should continue reading this book at all. I was starting to get fear and anxiety from the list of possibilities, but few applied to my son currently. Who knew which ones would apply to him ever?

After a few months, I started reading again..headaches. Not fun. Unique dental challenges. Ugh! A few more pages...I stopped. And there I remain on page 150 after beginning a year ago. 

I read the Down syndrome book like one pulls off a band-aid. One quick painful motion, but it was over. I knew "everything" I needed to know after it was completed. I didn't like how I felt during the process though. The EDS book has been read like option two for a band-aid's removal. Slow, methodical. The pain is duller but it's over a longer span of time. I'm still not done with that band-aid. I don't know what other symptoms will be described beyond page 150 and if I'll feel better or worse after reading them.

I know what I need to know for right now. I love both of my kids. Whatever happens in the future, I'll face it with them. Every person with a diagnosis is unique. There are no two children with Down syndrome who are exactly alike in their challenges, strengths, and weaknesses. Some of the things that worried me about Down syndrome didn't happen to Jaycee. The same will probably be true for my son. Whatever EDS brings to Elijah, I'll support him through it.

Right now though, he needs a mother with a clear mind not bogged down by fears and possibilities that sound hopeless. So I'll stay on page 150 as long as I need to be. Instead, I'll open up my Bible and read what God has to say too. I'll ask God to help me parent these remarkable children, and give me hope for our future.

³ We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. ⁴ And endurance develops strength of character, and character strengthens our confident hope of salvation. ⁵ And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love.

Romans 5:3-5 NLT

Keeping Your Faith When Life Tries to Take It

I know I can be strong. I also know I can be broken.

Life hasn't been easy since becoming a parent over a decade ago. In fact, it's been very, very challenging. Yet, I still have faith in the goodness of God and consider myself a Christian.

My faith in God was strong when my husband and I were looking forward to the birth of our first child. At that time, I would have described myself as a very carefree, optimistic, and joyful person.

When Jaycee was born, I was 25 years old, and it would be my first big crisis of belief. I was expecting to deliver a healthy baby girl and return back at my job in a school a couple of months later. But that isn't what happened.

Instead, Jaycee was born and sent straight to the NICU for 10 days. She was diagnosed with Down syndrome, AV canal heart defect, pulmonary hypertension, and congestive heart failure before we left the hospital. I came home with a baby who needed intensive care, lots of medications, and an open heart surgery.

Having a child with a life threatening condition made me a mess. At the same time, I was also hopeful. I know it doesn't make sense. In the beginning there was faith inside of me that rose up. I prayed, spoke scriptures, and even fasted over her. I leaned upon some of that optimism that came naturally. At the same time, depression started to creep in. This feeling was new to me, and I didn't recognize it right away. I was overwhelmed and shocked by my baby's diagnoses and sudden turn of events that came in my life. 

Over the course of a few months into this battle for my child's health, I became a depressed Christian. Some people may think that's impossible, but I can tell you that it is possible to love God and believe in Jesus but to be sad from an event in your life that spirals you down further than you ever anticipated. Is it Godly or right? No. But, you can have very big doubts while you try to do life.

Jaycee's first year of life left me with more questions and worries than faith. During that year, she had an open heart surgery followed by 3 months of oxygen use at home. She failed a hearing test prompting talk of tubes. She started wheezing when she was sick and asthma began being discussed. Her eyes started to turn in and cross which meant seeing another specialist who talked about a surgery in her future. Her developmental delays required home therapies every week. It seemed like every time we turned around; we got bad news.

Any hope I had in God when Jaycee was born was gone by the time she was a year old. I was worn out in every way and my relationship with God suffered. It wasn't a conscious decision I made. It was a slow process of allowing negative thoughts and doubts to infiltrate my thinking and crush any faith. I also doubted the effectiveness of my prayers. Therefore, they became shorter and shorter and done less and less often.

There were questions I had that didn't seem to have any answers for. I couldn't find justice in our situation. I cried to God about my daughter's health with seemingly no response and no miracles.

I continued my Christianity by reading scriptures, going to church, and trying to love God through so many immense emotional and mental struggles. I waited for things to get better. I waited for Jaycee's health to improve. I waited for me to see something happen in her life to know that God was still working in our lives or that He cared.

What can I say? I wanted things to be easier for me and the rest of my family as proof God was with us. But, that hasn't been the case. Struggles have continued over the years. The events the played out after Jaycee's first year of life until now are too much and too long to explain in one post. Here's a sampling of some things we have parented Jaycee through: 20 something hospital admissions for illness/emergencies, 3 heart caths, 2 open heart surgeries, daily medications, bi-pap at night for 8 years, respiratory distress at home, helicopter transports, etc.

Here's what I want you to understand. Life hasn't gotten magically better for my daughter. She hasn't become verbal enough to speak in sentences. She hasn't gotten off her medications. There aren't less doctors involved in her care. She hasn't stopped having scary health emergencies although they are becoming less frequent. The respiratory problems haven't been outgrown. She can't get rid of the medical equipment in her room. There wasn't a "miracle" in any of these areas, but we have seen God's hand on her life in times of serious illness and other situations. I realized the proof of God I wanted came in other ways, not just "healthy" times.

Despite all of this, my relationship with God is strong. After struggling for awhile  when Jaycee was younger without exactly knowing how to pull out of the place of shaky faith I found myself, I changed. I transitioned from a struggling Christian to a Christian with a renewed love and heart for God and her life. It wasn't easy. In fact, it was really hard at first. But it became easier. I believed the things I originally felt about God, and prayed with the faith that God did listen and hear. Something changed in my heart.

Have you been struggling? Here's my advice on how to rekindle your faith while your circumstances are challenging.

• Connect with God. I kept going to church and reading the Bible even when it was hard. Faith for me some weeks was just showing up at church saying, "God, I believe in you even if I don't understand my life right now." Other times, I read a chapter looking for anything that would speak into my situation. I still tried to show a commitment in some way.
• Continue to pray. Here's where I messed up. I started to believe the thoughts from the enemy which said my prayers were pointless. But, prayer is always the key! I wish I would have recited the Lord's Prayer if nothing else to keep the habit. Whether you believe God is hearing or not, pray through it.  
• Find a friend who listens. This is hard when you're struggling. You believe no one will understand or no one has gone through what you have. You may know no one in your situation, but I hope you know someone with faith. That's all you need, someone with ears and faith. Maybe you tried to open up to someone and that ended badly. Try someone else. Isolation is not good! Find a friend who will listen and give Godly counsel when you are struggling. Keeping your doubts to yourself with only allow them to get bigger and stronger.
• Focus on the good things. There has to be SOMETHING good that has happened in life. Maybe you made it through the day without getting emotional. Perhaps someone took time to mail you a card. Maybe you got 8 hours of sleep. Sometimes, you have to be grateful for the little things and celebrate the small stuff. When life is hard, it is nearly impossible to find something positive. Find something everyday to be thankful. If your ratio of complaints far exceeds your thankfulness, then you need fresh eyes for your circumstances.
• Be patient. I know some days will be tough. You may feel like staying in bed all day or giving up on your responsibilities. Don't beat yourself up if you had a day full of anxiety or tears. Have patience with yourself but don't allow yourself to stay in an unhealthy emotional place. You deserve better than that.

There is hope in life. Even when things don't turn out the way you prayed, God is still God. Without faith, we have nothing, so fight to keep yours if life is trying to steal it away. Blessings!

Mom to Mom: After a Child's Diagnosis

When your child is given a diagnosis, a mom's life changes. I have found through my personal life and my work as a pediatric speech-language pathologist, any identified problem impacts a mom. Everything from a late talking toddler who needs speech therapy to a child with very obvious developmental delays needing lots of support, a mom worries about their child. I thought I would share some things I have felt and observed over the years.

-After a diagnosis, you feel all sorts of feelings.
You might feel relief to finally know what is wrong. You might be upset, sad, depressed, guilty, ashamed, lonely, worried, etc. I don't know anyone who does cartwheels when their child is given a diagnosis. Let's face it, it's hard. That diagnosis comes with labels, possible limitations, potential problems, and changes to your routine. These are real and it is not easy. As a mom, you love your child. You wish you could spare them from this pain and difficulty.

-It's common to worry about your child's future.
As soon as Jaycee was born, I was immediately thinking about how she may not marry, have a child, and live independently. I worried about things that were days away, months away, and years away. The future seems so hazy and questionable when there is a diagnosis given. Concern for the future is understandable but it doesn't do much good. I wasted too much time grieving things that were years and years away. On the other hand, maybe I have already worked through some of that pain. Remember to take it one day at time because only time will reveal your child's future and abilities.

-Family members are all on their own time table with the diagnosis.
Some people can stay in denial longer than others. You can't rush people into accepting something they are not ready for. Sometimes one parent is ready to get a diagnosis while one is refusing to believe there could be anything wrong. Other times, the parents are both on the same page but a vocal grandparent is not. Provide information, allow people to ask questions, and try to be patient with people. If someone is not ready to accept information, then you aren't going to convince them. Keep the lines of communication open but don't get frustrated with people you can't help.

-People will upset you.
This is a fact! There will be many, many people who will say the wrong thing. They will trigger many emotions ranging from sadness to anger. People don't always know what to say to you. They may end up saying something insensitive, ignorant (from lack of knowledge), or negative that will hurt you. The sooner you learn to forgive and ignore, the better. I have found that I can choose to let things go and not hold hurts, but it is very hard to do, especially in a traumatic time. For all the people that will say hurtful things, there will be a few gems that go above and beyond your expectations for kindness. Hold on to these relationships and cherish these instead!!

-If you are overwhelmed, get help!
The time after a diagnosis is a time of adjustment. It's normal to be upset and even sad. But if you are really struggling with depression or anxiety, seek help from a friend, a prayer partner, or even a doctor. You have to be strong and in a good mental state as the mom, so take care of yourself.

-With everything your child's diagnosis demands, keep the parent-child relationship sacred.
There are many decisions you will have to make for your child's care. It took me years to understand that I'm Jaycee's mom first and not her nurse, teacher, or therapist. Sure, I need to help her learn skills but if all of that learning and work is getting in the way of our relationship, then it's a problem.

-It gets better!
The first 3 years of Jaycee's were the hardest and busiest for me. Having early intervention in the home was extremely awesome, but some days the home therapists was annoying. The multiple appointments each week and people coming in and out was overwhelming some days. Developmental milestones are extremely important those first few years. When your child isn't meeting them at their intended time, it is high lighted by doctors, friends, and therapists. An innocent "Is she walking yet?" from a stranger would make me want to cry when Jaycee was over 12 months. I found that when Jaycee started pre-school and was measured against her own progress, things were easy for me to manage emotionally and physically.

-Understand that love is powerful!
You will have times when you question if you are capable enough. You will wonder if you are strong enough to make it through different trials. Trust me, you will!! Remember your strong mother-child relationship....love will grow and grow from it. You will make it because love is the ultimate motivator for everything you do. The love you have for your child will get you through the hard days and help you look forward to better days.



So, if you are just getting a diagnosis for your child, stop. Take a breath. Look into your child's eyes. Refocus. Every time you feel overwhelmed, look into that sweet face, and know one day you'll have a story to tell just like me. It will be a story full of twists and turns but one that centers around love, hope, and family.

What if...?

There are moments that make you wonder. Maybe you noticed something that just didn't seem right with your child. Maybe you noticed a significant difference in the development between two of your children. Or maybe you found something odd on your child's body. There could be a multitude of scenarios that have now caused you to have a thousand questions like:

What if...my child isn't going to outgrow this problem?
What if...something serious is wrong with my child?
What if...the doctor missed something?
What if...the teacher's concerns are valid?
What if...this isn't just a phase?

There are questions about our children that can haunt us as parents. The questions are sometimes too scary to even ask out loud. These questions keep us up at night, make us second-guess ourselves, and leave us feeling stressed and anxious.

The answers to these questions are needed but finding them may be difficult. Perhaps, you tried before to get some answers but you got absolutely no where. Perhaps, you were made to feel like an overly worried parent when you brought them up to a therapist or doctor. Perhaps, you want answers but your spouse doesn't. Perhaps, you are scared to find the answers and keep waiting for things to change on their own.

The answers to these "What if?" questions could possibly be life-changing and have long-term consequences. Facing the reality of the answers could result in an emotional and spiritual battle that you may not be ready to face. Whether you are ready or not, it may be time to face them!

If you are a parent right now in a "What if..?" battle, I want to encourage you. I know it's hard to wonder about your child's life, health, and future. I know it is a draining process finding the answers to silence those nagging questions. But, you can do this! This season in life is extremely difficult as you might have to change some of your expectations or dreams for your child. But, you will adjust and find a way.

Don't let a question produce fear in your heart. You are stronger than a question and the answer to that question. Why? Because you're a mom!

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.

Just an Eye Roll

It took one second for my mood to change.

I was observing Jaycee interact with children her age. The children were moving from spot to spot. I thought nothing of it. Then Jaycee followed them to a spot again which prompted one girl to roll her eyes at her friend. Oh! They were trying to ditch her! Yikes!

I know things like this happen but I'm better off not seeing them. I like to pretend that everyone loves and accepts Jaycee. I hate seeing situations like this.

Instantly, I felt the eye roll. While Jaycee continued trying to befriend the children unable to pick up on social cues, I sat in pity. I flashed back to other times I have observed similar behavior:

-The time the children were playing chase with the goal being to run from Jaycee
-The time other children simply stared at her and said nothing
-The time a few weeks ago when a child kept repeatedly asking her dad why Jaycee was in a stroller
-The time at Disney when a little girl told her mom that she was a big girl for walking in Disney and didn't need a stroller like her (pointing at Jaycee)
-The child at church who said repeatedly asked in disbelief "Jaycee can't read?" to her friends

A small child's eye roll was getting me all worked up. I was on the verge of tears when I left the event. I was feeling rejection. So many people love Jaycee, so why do I focus on the ones that don't?

With that thought, I began to pray. I asked God to take away the sadness and rejection I was feeling. I prayed for the child who made me feel so bad. And I started to feel better. I have found it's important to catch these thoughts early and stop them before my thinking gets warped.

And so the day continued on as normal. I didn't let that eye roll get me down! And I'm ready for the next situation that comes our way!

The Why Game

Often between ages 2-4, children will start to question "why."

I remember conversations with Elijah going like this.

"Let's get ready for bed, Elijah."
He asked, "Why?"
"Because we have to get up early in the morning," I said.
"Why?" he continued.

At times, the why question kept going on and on until I didn't even have a good response for him. Yet, the questions kept coming and coming and seemed meaningless. He just needed to listen to me and move on.

I've been thinking lately about how many times I have gotten stuck in the 'why' mode and couldn't move on. When something went wrong with Jaycee's health, I would often ask God why. Sometimes, I would ask doctors why Jaycee was so sick often. When they didn't have a good answer, I would go to google and search for one. Other times, I would analyze everything I had done prior to a big respiratory distress looking for a reason as to why it happened. This often resulted in me cleaning neurotically to get rid of any allergens.

For me, I think that I often want to know why something occurred because I don't want it to happen again. If Jaycee gets really sick, I want to know if there's something I can do or medicine can do to prevent it from happening again. Most of my why questions are really motivated by fear.

Why is such a small word yet has the power to keep us in a spot where we don't need to stay. Sometimes, there are no good answers. Just hunches or guesses from our human understanding. I am convinced that most of the time whatever reason we come up with to satisfy our need to understand is probably all wrong.

Take this passage:

Acts 28: 3-6
But when Paul had gathered a bundle of sticks and laid them on the fire, a viper came out because of the heat and fastened itself on his hand. When the natives saw the creature hanging from his hand, they began saying to one another, "Undoubtedly this man is a murderer, and though he has been saved from the sea, justice has not allowed him to live." However he shook the creature off into the fire and suffered no harm. But they were expecting that he was about to swell up or suddenly fall down dead. But after they had waited a long time and had seen nothing unusual happen to him, they changed their minds and began to say that he was a god.

The natives knew there must be a deeper reason why Paul was bitten by a viper. Obviously, he had deserved whatever he got was their first thought. When he didn't die from the bite, then they did a 180 and decided he was a god. They were playing the why game too.

Asking why isn't a bad thing, but it is if it keeps you in a mind set that doesn't allow you to move on. Not everything can be explained. Not everything has a good and justifiable reason to it.

Here's where faith comes in. When you have questions, when you don't understand, when you have doubts, you must pray and give it to God. Faith is moving forward with your life even when you don't understand. God is still there whether you have answers or not.

Whether Jaycee is healthy or sick, she is still loved by God. He is there. Whether or not I understand everything that happens in my family, God is still God. He is there. He cares. Staying faithful in times of not understanding is really the true test of our faith.

Does God Make Down syndrome?

There are many great mysteries in this world.

Why does an infant die? Why does a loved one gets diagnosed with a terminal illness? And my own personal struggle of: Why is an innocent baby born with Down syndrome and congestive heart failure?

There are many things that happen in this world that don't make sense. Yet something within my human nature looks for the deeper understanding of why these things happen.

When my daughter was born with Down syndrome and a heart defect, it seemed that there were two strong schools of thought in the Christian community on this subject.

1. Down syndrome is something that comes from God.

People who believe this say things like: God has to 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 Jaycee is a special blessing from God. Special kids are special blessings.

The Down syndrome diagnosis is something that should be embraced and accepted. It is viewed in a positive light.

The best scripture I found that supports this idea is found in Exodus 4:11 when God is speaking to Moses. The Lord said to him, "Who has made man's mouth? Or who makes him mute or deaf, or seeing or blind? Is it not I, the Lord?..." NABS

Then there's the other thought in the Christian world that I have encountered:

2. Down syndrome is not from God, so it needs healed.

People who believe this say things like: Perhaps you sinned and brought this into your child's life. Maybe your child was born this way because of a generational curse or a demon. You need to pray that God will take this away from your daughter. If you prayed hard enough or had enough faith, your child would be healed. God doesn't want your child to struggle.

The Down syndrome diagnosis is seen as a problem. It is a sign that someone mostly likely did something wrong that caused this bad thing to happen. The diagnosis should be prayed against and not accepted. You should have faith to believe God can take it away or at least make the child function close to normal even with the diagnosis. In other words, Down syndrome is a very negative thing. Pity, shame, and condemnation can come to parents with this viewpoint.

The best scripture I found that supports this idea is found in Matthew 4:23-24. Jesus was going throughout all Galilee, teaching in their synagogues and proclaiming the gospel of the kingdom, and healing every kind of disease and every kind of sickness among the people. The news about Him spread throughout all Syria; and they brought to Him all who were ill, those suffering with various diseases and pains, demoniacs, epileptics, paralytics; and He healed them. NASB

Which is right??

Here's where I struggle with the first idea. If God does make someone with Down syndrome, how can I pray for Jaycee? How can I pray for God to help her read or talk or be better if she was created that way? With all of Jaycee's health issues and struggles, did God create someone to suffer and be sick often? Did God intend for her to struggle for some great lesson?

I have problems with the second idea too. If God doesn't want anyone to have Down syndrome, then how do I accept the fact that she does have it? It seems like if I accept her Down syndrome as is, then I somehow lack faith to believe she'll be different. And if I can't pray it away, then what does that mean for me? Am I to always be looked at in a negative light with "open doors" because my kid is sick often? If I no longer wish to spend my prayer time praying for her to be healed of her Down syndrome, am I giving up? When the Christians who talk about how abortion is never acceptable just because of a prenatal diagnosis but then demand that child be healed when they are born just seems completely odd to me!

Some people are very comforted by the thought that God created their child with Down syndrome for a purpose. Others are fine with thinking their child needs prayer for the Down syndrome to be removed. I have never been 100% comfortable with either scenario. I felt there was too much focus on her disabilities and labels and not her soul and humanity.

Is there a third option?
My pastor at Crossroads Bible Church did a series on Spiritual Living and it offered me new ways to think about our lives here on earth. Here's some things I learned from that series:

• 1 Thessalonians 5:23: Now may the God of peace Himself sanctify you entirely; and may your spirit and soul and body be preserved complete, without blame at the coming of our Lord Jesus Christ. NASB  Jaycee is a spirit being with a soul (mind, will, emotions) in an earthly body.
• John 4:24: God is spirit, and those who worship Him must worship in spirit and truth. God is a spirit.
• Genesis 1:26: Then God said, "Let Us make man in Our image, according to Our likeness; and let them rule over the fish of the sea and over the birds..."  We are ALL made in the image of God, even Jaycee!!
• Then I started reflecting on the Lord's Prayer in Matthew 6 which specifically tells us to pray: Your Kingdom come. Your will be done, on earth as it is in heaven.
• I also reflected on John 10:10: The thief comes only to steal and kill and destroy; I came that they may have life, and have it abundantly.

After looking at many scriptures, I came to the following conclusions:

I don't believe that everything that happens is necessarily God's will just because it happens. We are told to pray for God's will to be done on earth. I don't believe that every diagnosis and every bad thing that happens is God's will.

I think when God made the earth and put Adam and Eve on it, He had a great, perfect plan. When Adam and Eve messed up, disobeyed God, and brought sin in the earth, the earth no longer had a perfect plan. There were negative influences that disrupted that plan that sought to steal, kill, and destroy the earth and the people on it.

While I do believe that sin, generational curses, our poor decisions, and our actions CAN result in a negative outcome manifesting in our life on earth. I also think that bad things happen because we live on an earth that isn't perfect. The earth is not Heaven. Heaven is a place our minds can't comprehend because heartache and suffering are regular parts our lives here on earth. I do think bad things can also occur for no reason at all simply because we live on earth.

I think when the doctor told me that Jaycee's extra chromosome was just a fluke occurrence that happens to an earthly body, I can FINALLY accept that now. I no longer search for a deeper meaning to it. It happened because stuff can happen to our earthly bodies. People can think I sinned or fell short or God made her that way. But, I found more peace when I just accepted the first explanation as to why Jaycee had Down syndrome that was given to me by that NICU doctor. It just happened. It could have happened to anyone living on the earth, but it happened to me.

Jaycee is still made in God's image regardless of her chromosome count. She has a spirit that will spend eternity in Heaven and has a soul. She feels emotions, she has will to choose, and she has thoughts....many of which involve Barney the dinosaur. God sees a person that He loves when He looks at Jaycee. The world judges her as less than or as less successful but God looks inside. I can look past her perceivable imperfections on her body and look deeper inside. She is someone that God loves regardless if she is healed or not. I think I'll focus on that instead.

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