What it comes down to

 I have read a lot more about Down syndrome these past couple of days and most of what I read doesn’t sound that great.  

The life expectancy of Down syndrome people in 1983 was 25 years, that’s 4 years before I was born! Nowadays the life expectancy is around 60 years.  A few other facts about Down syndrome are that they usually have heart issues, hearing issues, muscle development issues and thyroid issues that cause them to gain more weight than normal.  If a Down syndrome person gets married or is able to hold down a job it becomes newsworthy.  

As I read all these things I also come across moms of Down syndrome kids who say things like “we are the lucky few” because Down syndrome occurs 1 in 700 births.  I know why they are saying this…because they love their kids.  They would never want to replace their child, but I don’t know if I’d personally go so far as to say I’m the lucky one because my son has Down syndrome.  If there was a cure for Noah to be normal and healthy I would totally go for it.  

But as it stands there is no cure for Down syndrome.  However, my stance on the situation remains as it was while I was pregnant, which is to say that I trust that God knows what He has planned for me and my family and it is good.  Do I understand what He has planned?  No.  But I trust in who God is to take care of the things that don’t necessarily make sense to me.  I acknowledge that I am limited in my understanding but God is not.  

God has a complete knowledge.  

He sees the beginning, middle and end.  

So, while I’m standing at the beginning of my new life with Noah, I believe God already knows the middle and the end and it is all according to His good plan.  One day I’ll find myself in the middle, and then one day I’ll be at the end.  

He has a plan!  

This isn’t just a random assortment of circumstances being thrown together, but God is a designer by nature.  He is working all of these circumstances in a masterful way to bring all of His citizens home.  He has me and He has planned for me to be brought closer to Him through my circumstances.  

I am not going to pretend like I’m lucky or that Noah is fine and everything feels great, but I do believe that no matter how difficult life gets I have an incredible hope to get me through each moment with peace—a promised covenantal peace—because God is really standing by me.  I believe He is with me, that His Spirit resides in me, and that I don’t walk through life fending for myself.  I walk through life with God.  And God has His reasons for my circumstances for which I am simply called to steward under His leaderships.  The question isn’t whether my situation is good or bad, but it is whether I believe God is good or bad.  And I believe with all my heart that He is so immensely good to me.  

Habits that form perspective

How do I become zealous/passionate for God’s plans? 

Pray for that kind of heart 

Know God and think about who He is

The times that I feel most in love with my husband is when I see him doing something that he knows I will like, but not just doing it…I see him having a good time doing it for me.  He wants to do that for me.  And then I feel so very loved!  

God is the same way.  

He loves to see those who love Him by their obedience to His desires, but not just obedience but a passionate obedience.  He loves to see people who live to be obedient! 

There’s a story in the Bible about a guy who brings a woman into the Israelite camp in front of everyone after God just told them not to be linked to those women, so another guy named Phinehas immediately gets up with a spear and goes after this guy and kills him and the woman with him.  This causes God to turn His wrath away from Israel because God saw that there was someone who still cared about God’s words and took them to heart.  

“Phinehas son of Eleazar, son of Aaron the priest, has turned back My wrath from the Israelites because he was zealous among them with My zeal, so that I did not destroy the Israelites in My zeal. Therefore declare: I grant him My covenant of peace.”

‭‭Numbers‬ ‭25‬:‭11‬-‭12‬ ‭

Now, if think about the guy who got killed, his name was Zimri, he probably just figured “so what” I like this woman so I’m going to hang out with her and be with her.  That was most likely his attitude.  He saw what God did.  He heard what God said.  And He still went ahead and did his own thing.  He didn’t care. 

On the flip side we see that this infuriated a young man and compelled him to take action immediately.  

One man was apathetic to God and the other took that assault personally.  

There are two types of “Christians” in the church.  Apathetic ones and one’s who take God seriously.  And it shows.  

God grants Phinehas a promise of peace.  

While God is pleased to see Zimri struck down. 

God is pleased with the passion of Phinehas but for Zimri who could care less about what God said God watched as he was speared to death without mercy. 

Why was one man apathetic and another man passionate? 

I think it’s about the way these two men lived their lives.  The habits they invested in.  If you keep doing whatever you want you start to just feel okay about it.  But if you live in the presence of God where correction and rebuke are commonly given, you have a different perspective on what’s right and wrong—namely you have God’s perspective.  One man saw his actions as totally fine and acceptable because he lived a life of being the judge of things while the other man saw an atrocious crime against God’s honor and it angered him enough to slay the man on the spot.  

What perspective do you live by? 

Why did God give Noah Down Syndrome?

Why does God make children with Down syndrome or any disabilities for that matter? 

“As He was passing by, He saw a man blind from birth. 

His disciples questioned Him: 

“Rabbi, who sinned, this man or his parents, that he was born blind? ” 

“Neither this man nor his parents sinned,” 

Jesus answered. 

“This came about so that God’s works might be displayed in him.”

‭‭John‬ ‭9‬:‭1‬-‭3‬ ‭

Jesus then proceeds to spit on the ground and apply the mud to the man’s eyes and directs him to wash his eyes in the pool of Siloam.  The man is healed from his blindness.  So, why did God allow the man to be born blind?  Was it so that the man could see?  No.  It was so that the man could help others acknowledge Jesus as the Son of God.  

At first, the temptation is to think that the healing is what makes this man’s blindness give “glory to God,” but if we read it carefully we see that Jesus simply says “this came about (his blindness) so that God’s works might be displayed in him.”  For this particular occasion “God’s works” were for Jesus to spit on the ground and make mud and apply it to the man’s eyes—a sign that Jesus had the power to give sight to the blind.  This was a declaration of who Jesus was. The man was born blind so that his life would point to who Jesus is.  

At first the disciples question Jesus about the man because they think that if the man was born blind then either he sinned or his parents sinned so as to CAUSE his blindness.  In other words, something someone did caused this malady to occur.  But Jesus corrects them by saying God caused this man to be born blind for HIS PURPOSES—that through his blindness more might come to see Jesus.

Like me, a lot of people wonder why their kid is born with disabilities and some also think that it’s because they did something wrong and God gave them this child with a disability as punishment, but that is not what God’s word says.  

Romans 8 states that our sins have no bearing on our lives anymore because Jesus paid all of our penalties on the cross:

“Therefore, no condemnation now exists for those in Christ Jesus,”

‭‭Romans‬ ‭8‬:‭1‬ ‭

So, a disability cannot be “punishment.”

What is it then? 

Why did God allow for my son to be born with Down syndrome? 

The answer is best shown in John 9 through the man who was born blind.  

“His life is meant to put God on display.”

But we must be careful not to lump his healing with the meaning of what Jesus was saying.  His healing was one way in which Jesus could show others that He was God.  The point is that this man was able to help people see Jesus as Lord.  

 

When my newborn son takes his 100th nap of the day and is all scrunched up in his snuggle-me bed I love to stare at him.  As I stare at him I wonder what life will be like for him as he gets older.  What will he look like?  Probably very similar to other kids with Down syndrome.  What will he be able to accomplish?  Will he be able to be independent one day? Find a job? Have a family?  Some of the answers are yes, others are I don’t know, and some are a definite no.  

But the only question that pertains to the purpose of his life (and all our lives for that matter) is “will his life display God?”  

And that is the only question I need consider as I think about his life and his future. 

Will my son who has Down syndrome be able to live a life that displays God?  

If so, how might we do that together?  

Will my daughter’s life display God?  

Will my other son’s life display God?  

Will my life display God? 

Because that is why God made each of us in His image to be image bearers on earth. 

We are called to live a life worthy of the One who gave life to us with patience and humility (Ephesians 4:1).  

Our purpose is to live to the glory of God so that more would be saved just as you have been saved by His glorifying God (1 Corinthians 10:31). 

We are all told the reality that in this life we will

have trouble, but He has overcome (John 16:33), which means so will you.  

“Now this is what the Lord says — the One who created you, Jacob, and the One who formed you, Israel — “Do not fear, for I have redeemed you; I have called you by your name; 

you are Mine. 

I will be with you when you pass through the waters, and when you pass through the rivers, they will not overwhelm you. 

You will not be scorched when you walk through the fire, and the flame will not burn you.”

‭‭Isaiah‬ ‭43‬:‭1‬-‭2‬ ‭

The man born blind glorified God through his blindness.  Jesus glorified God through His death on a cross.  

It doesn’t always look good, but it always ends good.  

The truth is that God is a good God.  

He’s good because He gave Jesus for you, what would He withhold from you after giving up His everything to bring you to Himself (Romans 8:32)? 

Noah’s life is my biggest blessing because the moment he was born I knew for certain my life would not be conventional.  I will be reminded everyday that my life is to be intentional.  

-Jamie 

Overwhelmed but not giving up

Ever since we brought Noah home from the NICU I have seen and felt the weight of everything around me that I could be doing and it overwhelms me.  The kids’ playroom is all unorganized, laundry piles up, the dishes …don’t get me started on the dishes, and I’ve sort of neglected my two other kids in favor of a little more rest.  I don’t know if this is okay or if it’s right in God’s eyes, but I do know that I want to be intentional about mothering my kids and being a good wife to my husband.  I want to be able to expand my capacities rather than shrink away from them when I feel like I am incapable of handling all of it.  The housework is endless and I’m a horrible cook, but I am blessed to have so much help, especially from my husband and my parents.  Then there’s my church community who delivers dinner for us for the past 3-4 weeks!  I have no right to complain, my only desire in writing all this is to want to receive all these good things with the right heart.  I want to get up each day and do the best I can to serve my family within my limits as a mother who is pumping every 2-3 hours and has 3 kids.  But I want to expand my limits a little more each day.  I want to be intentional about spending time with my kids and teaching them about God—not just through words, but primarily through my actions.  Because that’s the greatest kind of teacher.  

I think I preoccupy my mind with many things like wanting to lose 20 lbs, wanting more sleep, wanting my kids to be okay, wanting Noah to be okay, thinking about how I fail to do well in ministry, wanting to write but feeling like an idiot once I have the time, and then the day passes by and I am on my bed just feeling like it’s a little hopeless.  I cling to Jesus because I know He can help an impossible case like me.  He’s done it many times in my life and I believe He will do it again and again.  

So, where do I start? 

I’ll start by a prayer:

Lord, I need help to get up and have a new mindset and a new way of doing today.  Although it feels like it’s too late, help me be intentional about spending time with my kids and husband and being present and patient while with them.  Give me wisdom to speak only words that build them up and to be a living example of Christ for them.  Help me because I’m bound to make mistakes and move by my emotions.  So Lord, help me be more desperate for You.  Help me to think deeply even if I’m tired and to rest when I have the time.  Thank You for Your grace that gives me endless chances at change and for never leaving me to figure things out for myself.  

Help me be still and just listen for each next step as I live today. 

In Your Son’s name I pray, Amen. 

Journal entry from the past

 August 25, 2022

1:26pm 

Lord…I really feel happy. 

I know emotions don’t define life and reality, but they are part of life and reality.  I think my happiness comes from knowing You are my God.  

I want to just be still right now.  

I really pray (even though I don’t pray often) that Noah would not have Down syndrome and that he wouldn’t have to get surgery and that he would somehow just come out completely healthy and handsome. 

BUT, I want Your will not mine.  If Noah having DS is the best for him and all of us then I want him to have DS.  I want the definition of Your plan because You see it all, know it all, and love me and my family more than I ever could.  So help me cling to that as my safe place.  

I pray also for Ben.  And for myself.  For our marriage.  We really need Your mercy.  I think on a good day like today it’s hard to feel desperate and recall just how crazy we both can be and how dangerous we are to each other and our kids, but that is the truth.  Our sin traps us and our children to the plans of the enemy and I pray against that in the name of Jesus.  I pray You help me be the kind of wife You designed for humans when You made them, when You established the covenantal act of marriage.  I pray I would respect Ben and submit to him as You would like me to….what do You see about our relationship? Our marriage? Our parenting? Our ministry?  Our way of being? 

How can we help one another to be as You made us to be? 

How can we glorify You? 

Am I too afraid to see or hear it because it’s too uncomfortable? 

Lord in what way can I better do my marriage with Ben?  What should I do or not do? What should I think?  How should I act? 

Lord is there anything I could be doing better or more?  

I know I really do laundry and clean well, but I want to prioritize spending time in prayer but then I always get so sleepy.  Help me have more stamina to pray.  

Lord is there anything You want me to say particularly for night prayer tonight? 

Hidden life. 

“Set your minds on what is above, 

not on what is on the earth.”

‭‭Colossians‬ ‭3:2‬ ‭

Definitions

 As I hold Noah in my arms (well he was in my arms until I decided to start writing) and now he’s laying in my lap on a pillow, I am just reminded of a few things.  One is how incredibly blessed my life is, and now more so with Noah.  I thought having a baby with Down syndrome would not be considered a blessing, but I realize now that my definition of blessed and God’s definition of blessed can be totally off!  

I was reading Leviticus 26 this morning and it was basically summed up in the following passage: 

“But if after these things you will not obey Me, I will proceed to discipline you seven times for your sins.”

‭‭Leviticus‬ ‭26‬:‭18‬ ‭‬‬

And I realized that the world’s definition of “love” or a “loving Go are not God’s definition, and what actually matters is His definition.  God requires obedience from us, but that word doesn’t seem to register freedom in our culture, in fact it seems to represent enslavement.  We don’t like to be obedient because it means we have to follow orders, but what’s wrong with order?  Absolutely nothing unless you’ve been conditioned to believe you somehow have the ability to order things.  The moment you think you know how to put things in order (whether in your life or in the lives of others) is the moment you become a monster because that kind of power only belongs to God or a monster.  And none of us is God.  

So, these definitions are vital to our lives and our ability to live a good life, because that’s what we all want, isn’t it? 

Definitions for blessing, curse, loving, unloving—these are all found in God’s word.  

God says that obedience is our sure sign of love for Him and others…and it makes sense!  God commands us to live and be in such a way that is best for others and for ourselves.  God knows what gives all of us ORDER.  So when we choose to obey Him we are essentially saying “God, you are God and only You how best to work my life in ways that not only benefit others but more so benefits me!  So, I will do what You say because Your way is right.”  That’s obedience and that is love because it leads us to live well.  

“This is how we know that we love God’s children when we love God and obey His commands. For this is what love for God is: to keep His commands. Now His commands are not a burden,”

‭‭1 John‬ ‭5‬:‭2‬-‭3‬ ‭HCSB

It says His commands are not a burden because the logic continues that ahi’s way is beneficial for us!  It’s not like we are doing Him a favor by obeying, but we are doing ourselves a favor!  We can’t forget that when we think of the definition of obedience. 

Although obedience is not always easy because it’s usually not comfortable to our plans, physical conditions, ideals, moods, and whatever else— we have to choose whether or not it is worth it to have some suffering for the sake of obedience to God.  Again, we can’t forget that ultimately our obedience is for our best life, so suffering is something we go through but it is not the end of our obedience.  The end is that we get to obtain the most perfect kind of life as God designed for us to live.  

A good question to constantly ask God is “what do You want me to do now?” Making ourselves flexible to sudden changes of plans, interruptions to our “work”, and possibly stepping into discomfort for the sake of obeying God is always well worth it because we are investing in having a life of perfect order under the Kingship of God.  

When you get a taste and see what I mean your definitions will change too. 

So far so good

 Honestly, I think I feel more of the awareness for Noah’s Down syndrome when other people find out the news.  To me, he seems like the perfect gift from God.  To be sure, before he arrived I did have my fears, doubts and wandering thoughts about the future and just what it would be like to have a child with a disability, but now that he’s here and we have been given so much help and information on early care for his development…I wonder why I freaked out at all.  He is a precious child like any child is.  And he is truly so sweet.  His eyes and his little facial expressions are just the sweetest thing! 

However, now that I’m on this side of the spectrum I can understand why other people feel whatever they feel when they hear the news about Noah having Down syndrome.  You don’t know until it actually HAPPENS to you, so I don’t blame people for feeling sorry or downright curious/concerned, but this has once again shown me that we often fear something before it even happens because we think we need some sort of control over our futures to be stable or happy or whatever.  But control is an illusion—meaning nobody has it.  No one can control whether their heart will take the next beat or suddenly stop from a stroke or aneurism.  No one can control the car behind, in front, or next to you to not make a sudden mistake and send you crashing into the freeway wall.  No one can control who will bully their kids, contract Covid, or turn the economy against your best interests.  At any moment we are all vulnerable to attack.  Yet we live our lives fooling ourselves into thinking we have some control only to freak out when things don’t go our way.  So we numb ourselves with shopping, food, wine, Netflix or cigarettes.  And we ooze a bad attitude about how we are victims to our circumstances despite our best efforts.  We all think we put in enough effort, but what is the truth?  Is it our effort that wins us happiness in life?  To a degree, effort is crucial, but effort requires a goal for which effort is being made…the goal is the key to happiness.  In other words, we have to first know what will make us happy and then make an effort towards that “what.” 

My goal is to walk more closely with God each day and hopefully my children will follow suit.  I recognize that I have so little control in life, I now just surrender!  Down syndrome, Covid, or any other sickness isn’t a huge deal anymore because they have nothing to do with taking me away from my goal.  

Now, so I have to remind myself of this every single day and sometimes a hundred times throughout my day?  Absolutely.  But I know it sorry the truth that I choose to live by because I’ve tasted the fruit of pursuing a closer communion with God and there is nothing like it.  

So far so good, and having a child with Down syndrome hasn’t changed my life much at all.  Haha.  If anything it has just reminded me again how my joy and peace is unshakeable because it isn’t based on anything but an unshakeable love between my Lord and I.  

So many doctors

 Noah has to see an endocrinologist, cardiologist, surgeon (for follow up), audiologist, occupational therapist, pediatrician, and possibly the geneticist all within the month!  

When we found out that he had failed the hearing screening twice and that Downs kids usually have hearing issues my husband made a comment about learning sign language.  It sort of startled me…it was a reminder that life was truly going to be different with Noah.  I think so far it felt more like a stage rather than a lifestyle—kind of like an injury that requires being in the hospital for a prolonged period of time, but once you’re out everything goes “back to normal.”  However, Down syndrome isn’t a stage and with it come a slew of other things that remind me of that fact. 

But as each day goes by we adjust to this new normal because we love Noah.  There’s nothing I wouldn’t do for him.  If we have to see 7 doctors then we are going to see 7 doctors!  Thank God for health care coverage! 

It’s also amazing that I feel so at peace about it all.  I mean, the days are a blur because I’m just busy handling it, but I find joy in the process.  Don’t get me wrong, I’m constantly reminding myself to check my attitude and my perspective with God, but it’s been easier than I would have thought.  God is truly good to me.  I want to keep clinging on to God because the moment I start doing things my way I know I’ll start sinking.  

So here’s to always depending on God who has held me above water this entire time and won’t stop unless I choose to look away.  

Noah is home!

 Noah was brought home yesterday around 1pm.  

I can’t believe we spent 9 days in the NICU!  But God is so good because thankfully we had the right insurance that covered such a costly stay! (Not to mention a super costly surgery!!)  

Noah has met most of the family and they are all so in love with him it warms my heart so much! I am so in love with him.  At first (and for a long time prior to his arrival) I was pretty unsure about what would happen and how I would handle everything, but I held on to God knowing He knew everything to the tee.  And He sure did! I think a hard aspect of having a baby with Down syndrome is having to face everyone else’s thoughts and opinions.  Some people seemed to genuinely care about us and Noah while others feigned care with more curiosity.  To be sure I’m guessing a few people were even happy that I am going through this while they aren’t and they’re able to witness someone close to them having this kind of experience (because we are all evil inside), but I just have to remember that this life—my life—is between me and God.  

I can’t stop gushing over him…sigh.  I’m so smitten. 

I think the biggest challenge for me right now is pumping milk every 2-3 hours and trying to take care of my other two kids as much as I can (making their breakfast, brushing their teeth, playing with them, and doing their laundry).  I feel like the days go by in seconds!  I haven’t slept more than 1-2 hours straight for 2 weeks, and I can feel when my body demands rest.  

However, I cannot complain because I have the most awesome team of people helping me including my mom, my church community, friends and our family.  Even my kids are so helpful at times haha.  I doubt anyone has this kind of help in all the world.  It’s the kind of help that money can’t buy: loving help.  

Life is so unpredictable.  I never would have imagined that I would have a child with Down syndrome…it really is scary news when you get it the first time around because there is so much stigma tied to the term.  But the more I live in it the more I realize that all of life is about perspective.  We can look at anything from any angle we want and that will determine whether we feel good or not good.  

I have been clinging to see everything from what God tells me.  He’s like the person in my earpiece who is directing me like in James Bond or mission impossible.  My eyes in the sky.  And I trust Him.  I see only a portion but He shows me the whole story but in steps. 

Honestly, I feel at peace and like Peter walking on water I know as soon as I take my eyes off Christ I’ll start thinking all kinds of things and fall.  So, every moment I just need to keep my eyes on Jesus. 

Almost Home

 Noah got his picc line taken out today.  I watched as the nurse used sterilized tools to take all the tape off him and pull out the very long string that was delivering IV fluids to his body.  Noah cried and I wanted to make the pain stop but I knew this was a good step for him so I just held his hand and stroked his precious face as he cried in pain (mostly when the nurse was pulling off the tape that was almost glued to his very sensitive skin).  

We are this much closer to bringing our baby home. 

And the thought sort of scares me.  I want him to be home but at the same time we have become accustomed to having professional help around the clock if his heart rate drops or his air supply is low.  So, the thought of losing that help and now carrying all the responsibility of his life feels scary, but I know God has His hand on Noah and on me.  I’ve never had to do muscle therapy for my kids or be careful about feeding them too much or too little or about their development…but now I have all of that.  I have this whole new way of taking care of a child and that scares me.  Stepping into the unknown…but then again I have learned that the reality of life is just that.  We are always stepping into the unknown.  

So, I hope when I take Noah home I simply continue to do what I have always needed to do:  pray and ask God for help every step of the way.  

Every

Step

Of

The 

Way.

How I met God

 I think I always sort of knew a lot about God because that’s just what happens when you grow up in a Christian home, go to Christian private schools and spend most of your time with other Christian people.  But I personally met with God in 2014. I mean He was always sort of stalking me wherever I was but I never truly took notice of Him until August 2014.  

I’m too exhausted right now to go into all the details, but basically I was a rotten mess and Jesus came and embraced me. I was covered in filth and He embraced me.  I gave Him no reason to approach me, but He did and He has loved me ever since.  I mean He has always loved me but I have now come to see it so clearly since the day I took notice of Him.  

And now—fast forward to 2022—these past 8 years have been the most meaningful in my entire life because they were years I have done with Jesus.  I haven’t stopped talking with Him, being with Him and making choices with Him like a barnacle.  We have been inseparable.  Life was not always easy these past 8 years but there was always this great hope no matter how bad things started to look and feel.  And I have never been disappointed with the life God has given me.  

I have never lacked anything. 

I have had peace in my heart beyond what most would dream of! 

I have had love and deep relationships and so much joy…

I know my story is only a continuation of what they call “the best is yet to come” as I walk into this next season of my life as a mother of 3.  As a mom of a child with Down Syndrome.  I would never have imagined this would be my life, but this uncertainty is me trusting that God writes my story and His ability to write a good story is much better than mine.  

Giving my kids their mission in life

 I recently watched 007 and it’s all about James Bond on mission.  The story is about him taking down the bad guy.  His mission is helped by a team of people who help him because they have the same mission.  Without the mission they don’t really know what to do, and in fact James spends a good amount of time simply drinking his life away before coming back to his team.  Without a mission we squander our resources on temporary pleasures that always seem to leave us emptier than before.  

Recently I heard some strange and sad statistics: more women are dominating the education system than men.  In other words, yay for women, but what is happening to the men?  Men no longer feel the NEED to be a man.  They are becoming more and more absent in families, jobs, and in education.  Why?  

They don’t have the right mission in mind. 

Self glory is a mission that kills a person.  

If your mission is about fulfilling yourself (which is the slogan of our culture) then why do so many people who reach the top commit suicide or overdose on drugs?  I believe the Bible offers the answer to that question when we consider the purpose our Creator gave us in the beginning.  Genesis states that God tells man “be fruitful and multiply and subdue the earth.”  Fill the earth with people who know me, and take care of each other and of this world I’m making.  Take care of everything.  Take ownership of this world and not just for your good but for the good of everyone and everything in it.  

 “And God blessed them. And God said to them, “Be fruitful and multiply and fill the earth and subdue it, and have dominion over the fish of the sea and over the birds of the heavens and over every living thing that moves on the earth.” (Genesis 1:28)

So I want to teach my kids that their chief end in life, their purpose, their reason for waking up each day is to glorify God and enjoy Him.  Outside of that there is nothing. 

I’ve been reading John 15 to Noah each time I visit him in the NICU because I want him to know that abiding in Christ is what matters in life.  I also want to remind myself of this because I start to waver at the thought of what life might be like for him or me when we get home…how will Down syndrome affect him and how will it affect me, but reading John 15 makes all of that irrelevant. What matters is that we abide in Christ.  

Learning what it means to “abide in Christ” seems to have been my life journey with God.  And what it has come to mean to me now is simply that I draw close to God.  That I ask Him for wisdom and direction when my emotions are going in all kinds of directions.  It means depending on Him to give me what is the best.  It means everyday, moment by moment, I am in God’s perfect plan so I have every reason to work hard and enjoy the fact that God is using what I do for His glory and my good.  It also means resting well, eating well, spending quality time with my kids, loving my husband, and walking in constant obedience to the Spirit’s voice at each next step.   It’s about complete trust and surrender to His lordship—especially when suffering ensues.  It’s about letting go of control, but not just letting it go as if prying it out of my hands, but letting go because there is nothing else for me to hold on to but the mercy of God.  It’s letting go with elation. 

There is good in this abiding. 

There is peace and joy.  

There is nothing to lose in this abiding and everything to gain. 

Even in my situation…I can abide in Christ and I want Noah to know that this is his chief purpose in life as a boy born with Down Syndrome.  He is not different than his brother or sister.  We are all called to abide in Christ and as we do we are fruitful and we help multiply the number of people who live to the Lord and not to their own agendas. 

Today we received the final word that Noah indeed has Down Syndrome.  Up until now we all held on to this small chance that he might have a mosaic form of it or that he might not have it at all because we were still waiting for his genotype labs to come back and confirm it.  Today was that day.  It is confirmed.  He has Down syndrome.  For a moment it shook me again to my core.  I felt the little pieces in me begin to shake and shatter and I made my way to the bathroom holding on to the truth of God with every ounce of energy I had in me.  

I am a desperate person. 

I have grown in my desperation over the years and today I have grown more desperate.

In my mind I have had evil thoughts like “what if I never tried for a third child?  Was it a mistake to try and have another baby when I had two perfectly healthy and beautiful kids?”  “Why is this happening to me…or how is this happening to me?  This wasn’t supposed to happen to me…”

I feel waves of my fear come at me and I begin to have tears stream down my cheek as I tell God I am afraid.  I am scared.  I feel so helpless.  I don’t know if I can take care of Noah.  And I hear my Shepherd’s voice guide me back to the mission. 

My mission on earth for as long as I am here is to glorify God and enjoy Him.  To multiply the people who know Him and take care of whatever God gives me.  People, money, time, energy, thoughts, materials, relationships, etc.  

and as I stare at Noah who is now sleeping on my chest I am overcome with a love for him.  The world may not accept him and he may have a different kind of life but he is God’s beloved child and my great gift.  And our mission is one: to glorify God and enjoy Him, and my job is to live that mission out everyday for my family and for myself.

To abide in Christ daily, because in Him we will see much fruit, but apart from Him we can do nothing.  (John 15) 

Abide: what does this mean to you? 

To me it means depending on God for everything.  Believing that He is good and this is all part of His good and perfect plan to bring Him glory and to give me a full life overflowing with goodness.  So when the fear hits I run to my refuge which is God and I recall His love for me, and wait for His love to work like lava by melting away all the fear and reminding me His hand is on this and His eyes have never left me. 

Incredibly blessed

 As I hold Noah, day 11 of life, and still in the NICU, I am struck with the fact that I am so incredibly blessed.  My life is t perfect or ideal to most, but there is this real joy and real peace that makes it so satisfying.  I may not have the big house, healthy children, or a romantic marriage, but we are all living with the sole purpose of abiding in Christ and when we lose sight of that goal we fight to get back on it!  We know that outside of Christ there is nothing for us.  Our joy is found in Him, He is our great delight.  As I hold Noah my heart is filled with this immense joy and honor that God has been with me and continues to be with me…that He calls me friend and has gifted me with this precious child.  I don’t know what lays ahead for us but I do know for certain that there is joy, peace, and so much confidence that everything is going to be woven into the beautiful plan of God.  The good, the seemingly bad and the weird will all be pieces of His beautiful purpose. 

I find that to be the incredible blessing! 

My son is so beautiful!  Just looking at his precious little face with his mouth open as he sleeps on my chest I am overcome with gratitude towards God.  I wasn’t sure how everything would turn out while I was pregnant and I prayed all the time that Noah wouldn’t have Down Syndrome because I was afraid, but now that he’s here I find that he is perfect.  Down syndrome or not—he is the perfect child for me.  He is a reminder of God’s hand in my life.  

What a trip!  I have 3 kids now…I’m part of THAT club haha.  I am sure it’s going to get crazy, I’ll still have days where I regret yelling at my kids too much or not enough, but I am not alone and my life is not in my hands (thank God!) my life is in God’s good hands and He is in every detail.  I need only to seek His face, ask for His wisdom, and obey whatever He convicts me of…and the rest is me falling into an ocean of His grace. 

Lord knows I need His grace.  I know it’s my responsibility to obey and walk with the Lord, and I own up to every mistake and I know full well I deserve whatever “bad” thing results from my lack of closeness with the Lord…but what sweet relief to know His grace somehow works in all of that to lead me to Him—back again and again.  I ask God to always bring me back no matter the cost.  I can lose many things, but I cannot lose Him.  

I also feel incredibly blessed because this whole situation has shown me just what amazing support I have from friends and my church community.  Love is pouring in from all sides and I’m just so thankful…how mindful the Lord is of me!  I’m humbled by the care people have shown to me.  It fuels me to want to do more for others as well…I feel so small and yet so held together by so many people who are praying for us, buying us good, gifting us, and constantly sending words of encouragement and care.  Like I said: incredibly blessed.  

Incredibly blessed. 

I never want to forget this. 

“You are Mine.”

“Now this is what the Lord says — the One who created you, Jacob, and the One who formed you, Israel — “Do not fear, for I have redeemed you; I have called you by your name; you are Mine.”

‭‭Isaiah‬ ‭43:1‬ ‭HCSB‬‬

A new normal ahead

 Today we went to the NICU and the doctor on shift happened to be a mother of a special needs kid and she gave us all the information for something called “regional centers” which is a state funded program for kids with special needs (like Down Syndrome).  She went into detail about the benefits of free help from OT and PT and speech therapists.  As she talked I felt both grateful that such support was available but also overwhelmed that this would soon possibly be part of my new life with Noah.  I have had friends who have kids that attend speech therapy and need OT and PT, but I never thought I would be the one needing it for my child.  Call me ignorant, but I always thought my children would all be healthy and grow up the way I did—not needing any extra kind of help.  It’s strange because it feels as if there are so many more risks involved now that extra help is NECESSARY.  It’s not a luxury it’s a need because without it Noah could fall behind in many areas which would lead to future complications.  This is a new normal for me.  

I started to think “will I have enough time to invest in Noah’s extra needs as well as attend to my two other kids?  Will I be able to keep up with Noah’s needs or will I mess things up for him?  What will my schedule look like?  How will my kids handle it?  What if …what about…will I…will he be okay?”  My mind fills with questions, but I have to capture all those what ifs and what abouts and just talk to God.  He knows.  He’s aware.  And He will not leave me to fend for myself or my children.  He will take me every step of the way.  I need only DEPEND on Him each day.  To take each day with confidence not in any program or even in my self or my resources, but confidence in God—that He is with me and if He is with me I will be able to do whatever needs to be done for His will to be done in my life and in the life of my family.  Control is an illusion that I don’t need.  I need to rely on Christ.  

So, as I look at my son’s cute face in the NICU, I know I’m in for a new normal, but it won’t be overwhelming because God knows what I can and can’t handle.  My only role is to abide in Him each day and do what needs to be done trusting God in the process.  What my family needs most is for me to bear fruit by the power of the Holy Spirit, and I can do that only when I am abiding in Him in the innermost parts of my heart.  It’s the sweet moments between me and the Lord—whether late at night or during a midnight pumping session—I can talk to God, give Him my cares, and remember that He will never leave me to fend for myself.  He wants me to rely on Him like my children rely on me.  And I want to rely on Him because if I don’t I just don’t know how to handle everything…I may have an idea, but I don’t trust my way.  Like I said, control is an illusion, so much could go wrong that I have no power over—but if God is the One who is fighting for me and walking with me then all things become possible.  I may not understand everything, but I don’t have to.  I just need to trust that God’s timing, God’s way and God’s plan is perfect.  

And then I just take each day with gratitude and peace because God has me right where He wants me and He will be the One to lead me to where I need to be next.  

I believe that being in the NICU or participating in Regional centers and whatever else may become part of our new normal-God knows.  And this is the life He has given me to bless the world and be a light in dark places.  For His glory and my good! 

He is good.  

PS: I’m not just saying that or preaching to myself, but I am reminding myself of what I believe to be true.  When my emotions give way to thoughts that are not true or to fear that isn’t a fear of God but a fear of circumstances—I have to remember the truth and anchor my mind in it.  Because emotions are like currents—they can push you one way or another, but the truth is a destination that you choose to return to again and again when you find that you’ve been pushed or driven away from it.  My destination is to draw closer to God no matter what my emotions may do to me.  I must choose to remember where I want to go and turn back when necessary.  

Perhaps this is why I don’t feel so scared about Noah in the NICU with all his tubes and needles wrapped about his fragile body.  My emotions may bring me to tears but my truth is that God knows and He is taking care of everything for me.  

Day 7 at the NICU

 I got to hold my son skin to skin for the first time today and as soon as I felt the warmth of his fuzzy little body against mine I swelled up with tears because this was how it was supposed to be.  It felt long overdue.  The connection I felt was so strong.  This was my son.  As the nurse maneuvered all the wires and tubes so that I could hold him I was thankful for this little guy.  Here we were, skin to skin, just needing one another and loving it.  

There are some days where I really have to fight to believe that this is all a part of God’s good plan for my life, but other days it’s pretty easy to see—for example, because Noah is in the NICU I’ve been able to pump and recover pretty well.  My mom has been watching my two other kids and our church community has been delivering meals to us everyday.  It’s been very nice—unlike the first few weeks with a newborn at home where it’s hectic and no one sleeps!  Then I see how this was all part of a good plan for everyone, but especially for me.  God is helping me to gear up for what’s to come and He has given me this time of rest and reflection.  

Noah is still not ready to start trial feedings with actual food (because his output is kind of green and still there), so they told us it would be at least another two days before they tried giving him my breastmilk.  When I was with him I could hear his tummy rumbling because he’s hungry and that broke my heart.  I want to give him food and I want him to be able to eat!  But I know God is in control so I don’t have to be.  

We are simply waiting, and honestly the waiting is only hard when I let my imagination run away from the truth.  But as I talk to God in every feeling and moment I am reminded that He is well aware of all the details and He wants me to simply trust in His way and His plan and mostly in His character.  And I choose to believe in all of that because as Peter once said “Where would I go? You hold the words that bring eternal life.” (John 6:68)

I’m back!

 It’s been 4 years since my last blog entry…because I got married 4 years ago, started youth ministry, and had 3 kids so it’s been quite an adjustment!  

But here I am again, and I’m not sure if I’ll be consistent but I thought it would be good to start writing again considering how good God has been to me and everything I’ve experienced these past 4 years! 

But mostly because my son Noah was born 4 days ago on September 27, 2022 and right away he had to go into surgery and is currently staying in the NICU for the next few weeks as he heals and learns to eat and survives whatever else might be wrong with him.  As a mom nothing is harder than watching your child have to go through pain.  And as I watch my son with all kinds of tubes in his mouth and IV’s in his arms, hands and feet I have to make a choice about what I will do with all these feelings inside of me.  And I am choosing to run to God and take refuge in His goodness and sovereignty over the whole situation.  

Noah was said to have a 98% chance of Down Syndrome, but we are still waiting for the confirmation from his labs to say with certainty that he has it.  While I was pregnant I would pray that he didn’t have it but I also prayed that if God wanted him to have it then there must be a good reason and I would trust that reason and revive whatever God gave me as a gift and a blessing.  So as we wait for his labs I know for certain that regardless if he has Down syndrome or not I am already head over heels for this little baby boy.  My husband and I have been trying to visit him morning and night everyday and the more we spend time with him the more we just fall in love with everything about him.  The whispy hairs on his head, his little lips that are identical to his older brother, his round little eyes, and the small sounds he makes as he shuffles around in his NICU ark.  

As for me, I’m now in postpartum and it’s like I’m constantly being chased by this heavy cloud  that wants me to just be swept away in a sea of emotions…but I’m running away from it and towards God.  I’m actively keeping my mind on the words God speaks to me in the quiet places of my heart.  I feel the cloud around every corner and then I just book it towards the refuge tower of God’s presence and His word.  I have to…because if I don’t I know I risk being swept up in a sea of emotions that doesn’t do me or my family any good.  But as I hold tightly to God’s presence and His Word I find a peace wash over me about the whole situation.  

Everything is going to be okay. 

No. That’s not it.

Everything is going to be the most incredible blessing in my life because God is my good Father and He has always been so abundantly faithful, merciful, loving, and generous towards me!  Everything is going to be more than okay—it’s all part of His perfect plan.  And I believe Him.  He knows better than me.  

So I run to Him when the cloud hunts me down, I run and I don’t stop until I’ve reached refuge in Him.  

I hope to share my journey as a way to encourage anyone going through anything they don’t understand.