I have prayed for God to show His path before me for almost 2 years. I have prayed on Ryan’s head every night at bedtime while he lays quietly in bed — for God to heal his head and to show us the way to go if it was any different than the road we were already taking. In that 2 year time frame, Ryan’s neurologist left Children’s hospital to take some personal time. We then started seeing an eptileptologist. After a short time – he moved to Chicago. Because I liked him, I thought of commuting to Chicago, an hour and a half away, to see that doctor. Instead, I gave the new neuro a try. We loved him. He was straightforward, honest, took time to explain things to me, and even knew of and researched Chromosome 18 and seizures in kids with Ch18. Best of all – he and Ryan hit it off. Very well! After many tests (sometimes more than one!) – MRIs, EEGs, PET scan and Neuro psych evals – in God’s time and with His path lying before us, I knew it had to be done….. brain surgery.
I never want to cloud your perception of anything I went through or the lack of emotions and decisions, so let me explain how I dealt with the reality of surgery. I truly believe there were multiple times I questioned if surgery was the ‘right’ thing…
The appointments preparing Ryan for surgery were ‘just another appointment…’ with the possibility of surgery. In my eyes at the time, the possibility of surgery was much easier to deal with than when discussing surgery itself. Neurology appointments between seizures. The seizures were becoming more and more frequent. MRI’s, EEG’s, Neuro-Psych evals, Autism evals, more ER visits, hospitalizations…all things I had grown accustom to with Ryan and his epilepsy…something I just did with as much grace as I could. Did I cry? Did I show emotion? Did I get angry and share my frustrations? Absolutely. What mama bear wouldn’t?! Did I question if this was in Gods plan? Yes. But I honestly don’t think I would have gotten through without Him each step of the way either…I still trusted His plan.
The appointment with the neurologist when the decision was made about surgery being the best answer was huge wave of emotions for me — the neurologist told us he thought surgery was the best thing for Ryan and the whole neurology team agreed. I cried when Ryan’s dad and I, too, agreed surgery would be the best thing for Ryan.
For Ryan to possibly live a seizure free life was exciting to me, yet so darn scary! Yes. I teared up and shed tears. Right there in the neurology clinic room. In front of everyone there – neurologist, nurse, my aunt, Ryan, his dad. I was terrified. The thoughts of what Ryan has already been through and what he would have to go through in the months to come. What if surgery wasn’t the best thing? What if the seizures continued? What if…? What if…? What if…?
The prayers I’ve prayed have led to this decision. I was reminded God wouldn’t lead us down this path and leave us there.
I was reminded on the drive home from that appointment that this is God’s plan. It wasn’t mine. It was GODS PLAN. Who did I think I was to believe anything else. A rush of calm was brought over me. And I was thankful and so grateful for the calm and peace I felt.
Sunday – the day before surgery, was like any other day other than my nerves. I kept myself busy hiding my fear, anxiety, and nervous tension throughout, until almost bedtime for Ryan when I broke down a few times with ‘what if’ thoughts…
Britney and I took extra pictures and videos not knowing if it would be days, weeks, months, years or ever that we REALLY see Ryan’s personality and fun loving mood again. Brit and I thoroughly enjoyed Ryan and his laughter. His babbling and personality all came out and was just what I needed to know – that God has this. God has Ryan and is going to heal him through this surgery and recovery. I didn’t have to worry or fear or be strong on my own because I had Him, the big daddy of all, the greatest physician taking care if my boy. I didn’t need to fret.. God had Ryan, Brit, and me. And I didn’t need to be strong on my own, because I was reminded I have His armor.
Britney had an idea for everyone to wear blue for Ryan. She text and posted on her FB page for anyone and everyone she could get the news to…WEAR BLUE FOR RYAN TOMORROW!! I followed suit and got it out to my friends and family and the Ryans18q community. It was a tearful bedtime for Britney and I but with our prayers we were given Gods peace and mercy for a good nights sleep ahead.
I got everything I thought Ryan could use for the next week – at least – and I was ready for bed. After lying in bed, I asked God to help me prepare for the next day, week, month…whatever it took. For Him to help with my armor – get it nice and shiny, and ready for the first day of many to come that I would need it…stronger than anything I could ever prepare myself for.
I was ready. As ready as I would ever be….