10 months old

 I haven’t written in a while, and I probably won’t be very consistent…because that’s been my history, but I wanted to check in and write that Noah is doing well.  It’s still occurs to me that my son has Down syndrome, and then I’m like “whoa” even though all the signs are there: he sees 3 different therapists who work with him in our house, he had duodenal atresia surgery, he’s hard of hearing in one ear, he has the almond eyes and the tongue out resting face, he hasn’t begun to crawl or sit up by himself yet (he’s very delayed as predicted) and he still has several doctors on his medical care team.  However, when I look at Noah’s face I recall a few things: 1.  God gave me him, which makes Noah a precious precious gift given to me by God for God’s purposes (which are both perfect and good for me), 2. He is so beautiful and I love him so much!  

I don’t quite FEEL his Down syndrome yet, but all I know is God is in control and each day I take a step with Him and everything works out.  

Love you all, 

Jmegrey

6 months old

 April 24,2023

Noah just had his 6 month check up.  It feels like every month of health is a supreme gift!  I feel like screaming “we made it!” Haha.  Only because it’s been such a fragile time for Noah…from surgery at birth to contracting RSV at 1 month, to finding out he has loss of hearing in one ear (got his hearing aide that we don’t use because it’s not very practical at his age), to getting pneumonia after our Korea trip and all the therapy appointments in between that show he is delayed from normal kids.  I knew this was all to be expected and yet it still doesn’t make it less “fragile.”  So to make it to 6 months feels like a tremendous win!  However, my husband, who took Noah to his appointment, told me that we need to get his head and eyes checked because he could potentially go cross-eyed.  His head has been needing to get checked as well I’m case the platelets around his skull are not growing properly.

When I heard the news of about him needing to get his eyes checked and that he could potentially become cross-eyed I needed to run to God again.  I know that’s a blessing, but at the moment it feels like a burden…I don’t want Noah to be cross eyed.  I don’t want him to look funny or have trouble seeing well.  I don’t want him to be cross-eyed!  And I know God knows.  And I pray that Noah wouldn’t be, but I hold my prayer with open hands knowing that God is wiser than me and God has a plan for Noah.  And that plan is good—cross-eyed or not. 

So, I dive into prayer and meet God in the secret place. 

I’ve been listening to this song called “Be near to me” by Davy flowers and it’s a constant reminder to myself when I lose it…that I have it all.  That nearness to God is all I need.  I take rest in Him. 

I just put Noah down for a nap and I love to stare at him.  Asleep or awake Noah is just so beautiful to me.  I love everything about him.  His head, his eyes, his nose, his mouth, his neck and all the rolls on his little doughy body.  He’s my baby boy!  I love him so much.  But for a split second I am transported to a place where I care about what others think and then I start to sort of feel sorry for myself.  I start to think “why Lord?”  Why me?  Why my son?  Why my family?  And I start to think about all the people around me who have perfectly healthy kids and I start to feel like I got the short end of the stick.  This was the same feeling I had when I first received the diagnoses at 12 weeks pregnant.  

And I ask myself: “Jamie did you just convince yourself that it’s not that bad, but really you feel like it’s terrible that Noah has Down syndrome?” 

And I know without a single doubt in my mind that the answer to that question is “No.”. A resounding “No.”. But I need to ask myself and I need to hear my truth because when I don’t it’s easy for me to think my feelings in that “split second” are the truth.  But it’s not—it’s more like me thinking about the difficulties alone without all blessings.  And anytime we focus on the bad or focus on the food our attitude towards that thing will start to get influenced.  But when I look at the WHOLE picture: Noah has Down syndrome and he has been a joy and he is so sweet and is such a fighter for life.  Noah is hard of hearing in his left ear, but his right ear will hear the sound of my voice and erupt into the biggest smile.  His lower body has low muscle tone and we are blessed to have a full on team of therapists and professionals who come to our house for free to be with Noah and love on him.  

Noah might end up becoming cross-eyed, but it won’t affect his heart for Jesus and it won’t touch his smile.  

I don’t have to worry about anything.  

I can put my trust in God, because up until now God has proven to me that I needed Noah and I am a better person now because of Noah.  To be honest, it’s not harder or crazy inconvenient as I had feared it might be, and maybe that’s because he is still young, but now that Noah is here my love has grown more powerful and I know that whatever the future holds we have more than enough strength and provision to live our lives to the fullest.  

Almost 5 months as a parent of 3

 Noah is doing incredibly well—all things considered.  He is getting stronger and smiling more often that it just makes me swoon.  It is definitely alot of work because he has so many needs, so many people on his care team and sadly a mom who is really not good at juggling more than a few things at a time!  I’m still trying to stay on track with the basics like feedings, laundry, dishes, and my oldest daughter’s school things.  (Meadow is supposed to start kindergarten this year, but I haven’t had time to look for one and enroll her yet!). 

One might say I’m a bit of a hot mess.  I’m always busy but I don’t think I’m very smart with my time.  So I get a lot done but not a lot done.  I’m simply doing a lot of cleaning everyday.  Haha but I am thankful my milk supply is still going strong.  This is the first time where I am feeding my baby exclusively breast milk as I pump it out every 3-4 hours.  It’s exhausting and my boobs have taken a beating, but if it will save us money and be the best for Noah then I am still going to keep doing it until I can’t.  

Okay, now for the honesty. 

So, having a child with Down syndrome and hearing loss is scary because I’m not sure if I’m getting him all the help he needs to develop optimally.  I wish I had a planner or secretary who wold just tell me where I need to go and when…but I am my own planner and secretary and I suck at the job.  It’s a lot to ingest.  There are a lot of acronyms for all the different organizations such as EIP, DSA, IEP, DHH, and then there’s sources that are connected like regional center and sunny days and others that are not like John Tracy?  I feel overwhelmed to say the least and guilty because I don’t have the time to understand all of them.  

So, I’m just sort of taking things  dry nice and slow.  One thing at a time.  So, Noah is doing physical therapy 1x a week and he will be getting his hearing aid soon so I plan to find him a deaf coach so we can learn some sign language together.  

After that I have no clue.  I will take it as it all happens.  

Then I have my two other kids to think about (my 2 year old son possibly starting preschool soon and my 4 year old daughter who will be starting Kindergarten soon.) 

And then I have my ministry at church to think about and how God wants to use me to help just one more soul enter into relationship with Him.  

And then there’s marriage and all the crazy wrenches that get thrown into that wheel of a ride! 

Then there’s my post baby body that I would like to see bounce back, but I’m not ready to give up cookies and brownies nor do I have the time to go to the gym. Haha.  

I am in need of God’s help to guide my life so that I can help guide my kids to Him too.  

What is God’s purpose?

We found out today that Noah has a hearing impairment in his left ear and will need to be suited for a hearing aid.  

I knew this could happen and I thought I had prepared myself for it, but the news in real time still left me a little discombobulated.  For a moment I just froze and felt sad…I felt as if something was being taken from me, maybe the idea of being a normal family with healthy children?  I don’t know…but whatever it was it did leave me with a level of uncertainty for the future.  

But I knew, as the feeling lingered, that I had to give it to God.  I had to give the situation, the circumstance, the impairment and the consequences that came with it to God.  

I was reading 1 Samuel this morning and it was about the wickedness of Eli’s two sons—Hophni and Phinehas—and how they disregarded the Lord by doing whatever they wanted with God’s sanctuary and their dad never stopped them.  

“I told him that I am going to judge his family forever because of the iniquity he knows about: his sons are defiling the sanctuary, and he has not stopped them.”

‭‭1 Samuel‬ ‭3‬:‭13‬ ‭

They end up all dying, including the dad. It made me think how two healthy sons born into a family that knows God and raised in the church are wicked and end up living worthless lives and dying a worthless death. 

I can’t guarantee that Noah will NOT live the same life of selfishness, but I can say with confidence that having a healthy life and growing up comfortable may not always be what leads to a good life for you or your children. 

What makes a life valuable is when a person lives for God’s purpose.  

Now, here’s the small print about living for God’s purpose that I think most people miss: it’s about the desires of your heart and the choices that come about as a result. 

Do you desire to do what God wants more than anything else?  

His directions are plain and simple:  die to yourself and do as He did.  

Live as He did.  

Renew your mind daily. 

Present your requests to Him as needed.

Rejoice always. 

Be thankful. 

Serve others. 

Don’t worry. 

Work hard. 

Don’t seek Justice for yourself, but leave it to God.  

Obey even if it kids you. 

Take ownership of your relationship with God and follow Him the best that you can.  

This is the life I can still show my kids.

The real question is:  am I doing that? 

There is nothing hidden that will not be exposed.  

So live a life exposed to God.

“For nothing is concealed that won’t be revealed, and nothing hidden that won’t be made known and come to light. 

Therefore take care how you listen. 

For whoever has, more will be given to him; and whoever does not have, even what he thinks he has will be taken away from him.””

‭‭Luke‬ ‭8‬:‭17‬-‭18‬ ‭

God offers us the gift of life that keeps on giving, but it is unsuited for those who don’t follow Him.  Is it hard to follow God?  Absolutely!  Sometimes it’s downright painful, but it is WORTH it. 

That is what it means to fear God.  

He knows every choice you make today and whether or not it was made in submission to His will or your own selfish desires.  

I pray for strength to chase after what feels difficult if that is where God is taking me.  (And lots of mercy when it takes me too long to get there!) 

I expect….

And then I get so disappointed. 

So hurt. 

And then angry. 

And then I have to remember that I had expected something outside of Your will.  

I need only fix my eyes on You. 

Help me to do that.  

Help me to fall more in love with you.  

Help me have a desire to do what You want because I just love You. 

God sees everything

 Reminder to myself: 

Nothing goes unseen before God so live before Him. 

Choose God’s way.

At times I really don’t know if I’m asking God and moving by His direction or if I’m just doing what I think fits the occasion.  It really requires a slowing down of my breathing, my mind, my body, and my emotions (if that’s possible).  Basically it requires time to stop whatever I’m doing or thinking and remember not to trust myself but to ask God and consider my own thoughts to be deceptive and warped. 

How can sinners live before God? 

It’s simple. 

We must deny ourselves completely.  

Not partially.  Not just when we get scared or something bad is on the horizon.  

Completely.  

It means we learn to be totally and completely dependent on His voice even if it means we chuck everything we ever accomplished in knowing up until this point. 

We must have a pure surrender before Him. 

Look at my baby Noah.  

He is totally dependent on me.  

If I put him down then he stays down.  

If I carry him downstairs then he goes downstairs.  

Luckily for him I’m crazy about him so I try to think what he would like—he likes to be carried rather than laid down, he likes to be looked at, sang to, talked with, and he likes his diaper changed as soon as he pees.   

So, although he is totally dependent on me for everything I am happy to give him the kind of care and love that he could never have on his own.  I love to consider his needs and meet them. 

That is what surrender to God is. 

It is not that we “sacrifice” or “give up” something precious in order to submit to God, but we surrender ourselves to God who can and desires to give us what we could never have on our own: life in abundance.  

I just have to remember to live before God.  To trust Him more than myself.  To remember that He looks at my heart—my true motives and desires.  To listen rather than react.  To wait rather than take control.  To surrender myself to Him in obedience to whatever He would have me do because I know that He desires to give me what I could never give myself.  When I live before God then I never need to worry about anything because He already has everything under control to give me the most blessed life.  I simply follow and obey.  

“But if it doesn’t please you to worship Yahweh, choose for yourselves today the one you will worship: the gods your fathers worshiped beyond the Euphrates River or the gods of the Amorites in whose land you are living. 

As for me and my family, we will worship Yahweh.””

‭‭Joshua‬ ‭24‬:‭15‬ ‭

Gospel 101

 “If we say, “We have fellowship with Him,” 

yet we walk in darkness, 

we are lying and are not practicing the truth. 

But if we walk in the light as He Himself is in the light, we have fellowship with one another, and the blood of Jesus His Son cleanses us from all sin.”

‭‭1 John‬ ‭1‬:‭6‬-‭7‬ ‭

“For nothing is concealed that won’t be revealed, and nothing hidden that won’t be made known and come to light.”

‭‭Luke‬ ‭8‬:‭17‬ ‭

““Therefore, don’t be afraid of them, since there is nothing covered that won’t be uncovered and nothing hidden that won’t be made known.”

‭‭Matthew‬ ‭10‬:‭26‬ ‭

Being fully known simply means you understand that you need Jesus because the reality is: I am a dirty dirty sinner.  Just ask God to expose you and you will see just how far you fall from His standard.  What makes us feel “not so bad” is our own standard, but when we live under God’s standard we will see how wretched we truly are.  We are broken to the max.  We only intend to do evil all the time (Gen. 6:5) because we mostly live for our own agendas rather than God’s.  

Yet we have hope because it says that when we live in the light then Jesus will cleanse us from our sin.  In other words, it’s not that we will no longer have evil intent, but now we will be aware of it, and therefore can repent of it and be met by God’s grace to be forgiven of it!  And that is how we ought to live each day—in the light of this truth that God is constantly giving us this forgiving grace for our constant state of sin!  And His grace TRANSFORMS us to be more and more like Christ so that not only does God cleanse us but He moves us to live differently.  

We must come into the light daily.  

We must recognize our desperate need for God daily.  

Just ask God to show you His standard and let it crush you because it should.  We never had a chance until Jesus came and saved every one of us by dying on that cross and giving us the free gift of His imputed righteous (He transferred His perfection onto us by taking on our evilness). The exchange is ridiculous and can only be explained by God’s immense love for us.  

When you live in the light of His standard you will find that His grace is sufficient for you because you fail every time, but Christ covers you completely.  You owe everything to His work on the cross for you.  And Jesus intercedes for you daily so that each day you can live exposed only to receive His grace again and again.  

Your intentions are evil but when we live in the light it means we expose ourselves to be corrected by God. 

When we come into the light of God it means we are giving God liberty to do with us whatever He will.  

And God chooses to forgive us and this ought to lead us to CHANGE so that we love sin less and less and fall more and more in love with our Savior.  

Living in the light is both frightening and freeing because we must face the reality of our wretchedness while at the same time experiencing the power of His love for us.  

I pray you fall more in love with Jesus as you step into His exposing light. 

Basic stuff that I need everyday

 At times all I know is that I need God’s wisdom because my mind has a lot of ideas and opinions that cannot be trusted.  

I’ve learned that waiting for God to “fix my problems” is the best way to go about fixing my problems.  Although it may take longer than I want, there is essentially nothing else I can do.  If God takes 2 hours to tell me what to do then for 2 hours I can do nothing but wait.  

If my children need to take a certain medicine 3 times a day for 3 days in order to get well, then that is what I need to do regardless of my preferences.  My preferences don’t matter because the cure is as given.  

Waiting on God is difficult because it can leave me in a state of uncertainty which can feel uncomfortable.  However denying that God is good is much more harmful to myself.  When I see my situation through God’s eyes I become desperate for His wisdom.  No matter how scary or painful reality is, trying to make it something else is way worse because when I make my truth something that fits my preferences I become more self-reliant.  But when I see the truth as it is I am drawn deeper into dependence on God, and that is how we must all live every single day. 

Apart from Him we are doing empty things that have no real substance or lasting power—all for the sake of easing the pain of our uncertainties.  

As I watch my children grow, as I observe the reality of how difficult marriage is, the reality of what it takes to lead a small group or do life in community—I am a desperate woman.  

Noah having Down syndrome is a huge blessing because that reality is so obvious.  

I need God to keep my baby alive.  

But as I pray the truth gets revealed again and again that I need God for so much more! And as I see how God’s grace has been covering me in all my blind spots I am so thankful again to have this life where God has me and will not leave me to my own devices.  He knows me and He helps me when I call on His name—which should be everyday!