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.