I often wonder why God has placed me onto the paths that I am on in my life and even admit to wishing that I was on another. If you have read the beginnings of this blog, you would know that our life has not been the easiest, but looking back we can all agree that God has blessed through the trials. Today, I felt as though I was both grateful for the path I was given and then wishing my path was the one next to mine.
The reason I am writing this post is to give you my transparent view of being a mother of a child affected by Fetal Alcohol Spectrum Disorder. Where to even begin.....
My precious child, Nick, was born to a mother, who loved him dearly, yet was captured by alcohol and smoking. This in turn affected Nick's development and the rest of my child's life. I have written before about a day in the life of Nick, but never gave you the mindset of me as I am travelling through the day with him. Each day with Nick is never the same. We never know what our day is going to involve. Each morning as I spend my brief time with the Lord, I pray over him. I ask God to heal his mind, change his heart, and get him through the day with clarity. I then venture out and wake Nick up for the day.
I want you to understand that I love my child so extremely much that I couldn't imagine my life without him and that my thoughts are human thoughts and that God is doing a great work in my heart through Nick.
Honestly, as I go to get Nick up, my mind is fighting my heart ever so much as to whether or not I want to wake him up or not. You see, like I said before, I don't know what Nick's mindset will be in the morning. If I wake up Nick with a ," Hey Nick, we need to get up and get ready for .... " The response may be, "I don't want to." or "leave me alone." or "I love you mom." or "what are we doing today," or just nothing and refuses to get out of bed. If I wake Nick up with a, "Nick? are you ready to get up?" I may receive pretty much the same answers as above. It does not even matter how, what, or when I get Nick up, I truly do not know the response I will get. I am scared.
I try very hard to remember all of the great advice from the FASD group I'm a part of when talking with or to Nick. Such as, is this a behavior of defiance? Or perhaps, does he not understand my instructions? or maybe I said to much...slow it down...one step at a time. Or Maybe he didn't hear me. Wait, I have to remember he is really functioning half his age. Or maybe his brain is on shut down. Oh my! It's so hard to determine what is going on in his head because it's never the same when the action doesn't happen. I become overwhelmed.
Some people/friends try to understand our strict rules of no video games, limited tv, and no tv after dinner. Let me educate you a little bit on how my son's brain changes when he is overly visually stimulated. When a tv, video game, or even a phone with games for that matter, are placed in front my son, it's as if his "eyeballs become glued to the tv." Yep, I just said that. Jon and I use that term a lot! Nothing goes into Nick's brain and nothing comes out when he is getting this type of stimulation. I truly fear these moments, because when those things go away, my child's brain cannot readjust. What does that mean? A meltdown! I don't mean the whining and saying why can't I watch more, it's not fair. I mean the kicking, screaming, stomping, huffing, puffing, slamming meltdown. We had one of those tonight! So please do not be offended or think I am too strict when I say, Nick is not allowed to play video games when your kids come to visit, because then your child will not want to come again. So, what do we do when mom needs a break? Good question! I am exhausted.
I love the moments when Nick comes up behind me and wraps his arms around me and says, "Mom, you are the best mom in the world! I love you so much!" This makes those constant battles, meltdowns, and breaks downs worth going through..... until it happens all over again..tomorrow. I feel loved and appreciated.
Being Nick's mom is truly an honor bestowed upon me by God. I doubt everyday my ability to be a mom to Nick and often wonder why and how I can keep going, but God is faithful and is my strength. There are even days when I sit in my room just crying and praying, please God heal my son, make this go away, yet knowing this is who God created and that God will be using Nick's story as an amazing testimony. I have days where I just want to hide as a meltdown ensues, but God pulls me out of the door to meet this head on and bring our child into the arms of God. Some days, I just want to pull him into my arms as his anxiety overwhelms him to the point of crying or withdrawal, but am learning to walk him through it in prayer and scripture. I have days, where I just want to pretend batteries, water guns, paper, and balloons never existed. We have some days, where I just want to sit in my bed out of pure exhaustion from the days many meltdowns, searching obsessions, and anxiety moments of done me in.
We strive to carve scripture into his heart so much that my child may not be able to remember his math facts, but he can recite so much scripture that God has imprinted into his heart for the battles that God is helping him and will continue to help him fight in the future.
Although each day brings me something different with Nick, I know that God will always be whispering to me through Nick, "Your the best mom in the world, and I love you so much!" God makes me the mom I am, faults and all, He still loves me unconditionally and if I teach Nick anything, I want him to know that as God loves us all no matter what we do, I love him no matter what you do!
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