How to Have a Sound Mind Jack’s Story

Wow! It's been so long since I've written on here. The last time I was on here I was writing about our son's diagnosis at our 20-week anatomy scan. If you are just getting here, take a moment and read more about that here.

Our baby boy, Jack, is 6 months old now! I can't believe it. It's been quite the journey, but one that has taught us so many lessons.

First, I wanted to give an update on what's been going on with Jack and to keep this post not 10-pages long, I'll keep it short and in order :)

- Jack was born on October 4th, 2020. His birth was actually peaceful and went great despite all of the turmoil we had while we were pregnant with him - he was born happy & healthy and there was no need for shunt at birth (praise Jesus!). We knew he would be monitored the first year of his life but we were overjoyed that as a newborn he wasn't undergoing any surgeries and nothing was noticeably 'wrong'.

- Fast forward a few sleepless months ;) and we noticed that he was having a hard time following us across a room. And he was going cross-eyed more often than not. When he was born we noticed he would go cross-eyed once in awhile but didn't think too much of it because he was still a newborn and it was kind of common.

- We had our first check-in with a neurologist when he was 4 months old. They ordered an MRI for him to see if the fluid was getting any worse, but the MRI did not show it getting any worse it remained the same than when he was born. This ruled out any hydrocephalus diagnosis. Which is just a fancy name for a condition where children have so much fluid on their brain their head size gets larger and many complications arise and they have to have a shunt put in permanently. So yes, we were again so thankful that this wasn't a concern anymore.

- Now back to his eyes. The MRI also showed that the fluid was not currently doing any harm to his optic nerves (fun fact, there's like a trillion by the way!) and now we could just see an eye doctor for this issue.

- I'm flying through this timeline, but trust me it all felt like an eternity. And we had seen 5 different doctors at this point (all with different specialties).

- This past week we were connected with an eye doctor at Duke who specializes in pediatrics, and even more specifically rare eye conditions like this one. It has been determined (after several months and visits) that most likely has Duanes Retraction Syndrome. I have a hard time explaining this because there's so many layers to it but in short it's cross-eyes with a hint of favoring one of his eyes over the other. One of his eyes visibly gets smaller and retracts back into his eye socket when he's trying to focus on something. He has to tilt his head in order to get in focus. Hence why it's called Retraction Syndrome.

- He is scheduled to have his first surgery for this in May. They will go in and loosen his inner eye muscles because they are so tight. After a few weeks, we will reassess and see what else needs to be helped. Right now, the doctors are just focusing on him getting a clear line of vision. If this condition goes untreated for too long it can cause severe eye damage, even blindness.

- Side note: while in utero the fluid on his brain could have caused a delay in developing these parts of his optic nerves or caused some damage, but NOW it's not putting any pressure on those nerves. We won't ever know the true 'cause' of this eye issue but that is one of the many variables.

- Another side note: think I can be a certified doctor/scientist with how much new information about the human body I've learned in the last year :)

Now, that I've kind of laid out jacks health history... poor thing, I promise we love him so much and he's the sweetest little muffin of all time. I never want him to feel like he's a 'hassle' or an 'scientific study' - he's our SON! So please don't take how I approach these conversations as me just relaying facts with no emotion. Because trust me, we have been NOTHING BUT a ball of emotions.

Like I said before our journey with Jack has tested our faith like no other. I realized so many things that I'm going to again put in list form:

• I generally put all of my confidence in myself.

• I am very easily sent off my wagon.

• My mind is powerful and might as well have a mouth because it never SHUTS UP!

• The enemy is real and he is looking to steal, kill, and destroy.

• I am human.

• I am extremely type A and need a plan for everything.

• Also those plans need to always go right.

• Or I will lose my marbles.

• I need people in my life that I can trust not just in the happy times, but the crappy times.

• I never once stopped to thank Jesus for all of the good.

The list could really go on and on.

But something changed while I was pregnant with Jack. I recently spoke at a women's event at our church on all of this and so I can keep this post short and sweet I encourage you to go watch it here.

I promise this is not a click bait thing, and I need to say this time and time again: I still struggle every single day to keep my sound mind. It's an every day battle. My prayer is that you watch this and be encouraged. That you may not feel it, but God has given you peace. You just need to realize it.