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.