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.