It’s time for another story. A story of God’s continued work in our family’s life. This one isn’t a tear jerker like last time but one about life behind the scenes of social media. A story that is best told after healing has happened. So, let’s begin…
Last month on Instagram I shared that we had received some uplifting news about Judah.
It was March 1 and earlier that day Michael Luke took Judah to visit his neurologist. The same doctor that ordered the MRI last summer and later called to let us know that our child did have brain damage. After that call I knew I didn’t want to be a part of the follow up appointment. I didn’t want to hear the possible grim predictions of what to expect. Sometimes doctors don’t have the most optimistic outlook on medical circumstances. I feel like my role as his mother isn’t to understand fully what has happened but to do everything in my power to help him continue to progress forward. Michael Luke was to take him and then relay to me what he felt like I needed to know.
Before we could make an appointment Judah needed to have blood work done so that several tests could be done. Not sure what all they were, but tests to rule out possible medical scenarios. Eight vials of blood. So while we had the MRI done last summer and could have immediately made a follow-up appointment I purposely waited on the blood work. The first reason I waited was because our primary doc wasn’t too concerned about Judah’s damage. The second reason I waited was because my child had been living in an almost constant state of terror since we brought him home. We had spent months working on the bonding process and I really didn’t want to jeopardize anything just to have some blood work done. So we waited.
As we neared his third birthday and began making preparations for Judah to start the Pre-K program in our school district having blood work done became more of a priority. Why? Because his general doc wanted some done to find out which vaccinations he had already received. I made an appointment and held my furiously screaming and kicking child while the nurse drew eight tubes of blood from my sweet boy. It broke my heart to be the one holding him but we did it… and survived but I am so glad we waited.
With blood work done Michael Luke scheduled the appointment and made plans to take Judah for his follow-up. Even though we knew the damage was minimal we still didn’t know the exact damaged areas and what to expect as a result of that. We also didn’t know the cause of the damage. Let me just interject here that before Judah I never really understood the adoptive mother’s grieving of a lack of medical history. I have Esther’s complete medical history as well as her family medical history. We know more about her than we will probably ever share publicly but just know we have never been in the dark about her history. As a mom it’s really tough not knowing simple things about your child. I have no clue if Judah was born prematurely, if there were complications during birth, the age of the mother, or even the month or day that he was born.
The morning of the appointment came and I was incredibly grateful that God had arranged for me to be able to enjoy a rare lunch out with friends while Judah and Michael Luke enjoyed a guys day together. It was refreshing! We all need those times don’t we moms? Even though I didn’t go to the actual appointment I was still eager to hear some news from Michael Luke. Shortly after he left the doctor’s office he called and began to share with me.
Let me just reiterate that we knew going in that the damage wasn’t major… but sometimes when I think about all the delays Judah is trying to overcome or have an extremely rough and frustrating day it’s easy to let fear convince me there’s more to it than what our general doc was lead to believe from the MRI notes. THE DAMAGE IS MINOR though! Michael Luke saw image after image of Judah’s brain. There are quite a few small spots scattered around his brain but nothing major. Praise God!
So while that was encouraging news it wasn’t really anything new. But here comes the good part… the doctor feels like the damage is possibly a result of trauma during the birthing process. That’s sort of the best case scenario when looking at possible ways Judah might have acquired brain damage. He also doesn’t feel like Judah’s nystagmus is related to his brain damage. More than likely it’s hereditary.
The fact that his brain damage is so minimal and his developmental delay is so great is a little perplexing to the neurologist. He is referring us to a geneticist for testing to rule out any syndromes and other things like that. But it could very well be that the majority of his delay is because he spent two years in an institution. The doctor was very pleased with all the progress Judah has been making and regardless of diagnoses, therapy is the method of attack. And with eight therapy sessions a week I can say I think we have that area covered.
So while we wait on our appointment with the geneticist and more testing we pray. That seems to be the theme of this journey with Judah. My heart almost breaks to pray for all this to be a result of two years in an institution because I can’t bear to think about all that this little guy might have been deprived of. I thank God that no matter what happened he survived and now we get to cover this boy in love… and teach him to love and enjoy life.
Regardless, trauma from living in institutions and adoption is real and can forever alter a child’s life. It’s a type of brain damage that doesn’t show up on an MRI. Lifeline, our adoption agency, shared a post this week about using occupational therapy to overcome the results of trauma. Every child in an institution or who has been adopted is a fighter. Life has in no way been easy for them.
Let’s go back to the beginning of this post where I talked about this being a behind the social media scenes post of healing. This post is about rejoicing in God and what he has done over the past year. I am no longer crippled by fear of what the future looks like for Judah. What his diagnosis might be. God is in control and no matter the medical diagnosis, Judah is fearfully and wonderfully made in the image of my living and powerful God who is capable of a multitude of miracles and desires my earnest prayers and faith in Him.
It’s been no easy journey for me to get to this point in my life. One year ago I was crippled by fear. Satan used fear and attacked me from every angle. One of those was with April. The month. Kinda strange right? April is autism awareness month. Which is a great thing really. Lots of children are on the spectrum and there is a lot to be learned from talking with their moms and discovering ways to interact with these kids and to meet their social and sensory needs. In fact, this year I’m all about advocating for autism awareness month. Last year… not so much.
Last year it was absolutely terrifying to me. Why? Because I had a child who had recently been adopted. He demanded to be held while being walked or strolled ALL day. We were in pure survival mode at the time. Coupled with his delays and effects of institutionalization it was easy to “self diagnose” signs of being on the spectrum. I did the one thing moms should never do. I googled. Do not EVER try to self diagnose your child through Google. If you do, all of a sudden it will appear as if your child has 20 different disorders and syndromes, a need for four surgeries, and an extremely grim outlook for that child’s life. Just saying.
One Google search lead to another and looking back I probably read the fifteen worse case scenarios of living with a child with autism. Panicked didn’t even begin to describe how I felt. On top of that Seasame Street felt the need to dedicate a whole episode to autism… an episode that my girls wanted to watch again and again. Go figure. My social media feeds were filled with moms sharing about their amazing kids who were on the spectrum.. Only, my eyes were blinded to the “amazing” part at the time. Autism talk was everywhere and I felt like I couldn’t escape it. Never had I been so glad for the month of April to come to an end.
Judah doesn’t currently have an autism diagnosis. He does have sensory processing issues though. Issues that many children on the spectrum face and deal with on a day to day basis. Over the past year God has placed many families in my life that have children who are on the spectrum. I have gotten to talk to them and have been encouraged by them. I’ve also found we have many things in common. Autism is no longer scary to me. It’s just a label that thankfully allows many children to receive help so that they can learn to thrive in this world that sometimes does things differently than them.
Sometimes when we are walking through those deep trenches of life it’s scary. And it’s not as if we don’t know the way out. A trench is pretty straight forward for the most part. One way in, one way out. But even if you know the way out you still have to do what it takes to climb out. For me it was verbally telling Satan to GET AWAY! Changing my constant worry to continued prayers of strength to God. Praying for strength and learning to trust in His ways that are not my ways. Meditating on scripture. Meditating to the point that I wore temporary Bible verses from Armed with Truth so that I could read God’s promises whenever I needed to. It didn’t happen immediately but over time those thoughts of fear diminished and praise God for bringing me through the trenches.
It doesn’t mean those hard times won’t come again but wow I really learned a lot about fighting spiritual battles from those few months and looking back at where I’ve come I’m incredibly thankful!
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