Marek had been doing well since our trip to Detroit in regards to his spasms. We were noticing only one cluster a day and with less than 10 spasms in each cluster. Then we went a day with out spasms. As the 24 hour mark approached I could feel my anxiety rising. We hadn't gone spasm free for 24 hours in months. My mom and I knew it was approaching but we couldn't talk about it out loud to each other or anyone else. We were scared that some how we would jinx Marek and the spasms would return. 24 hours came and went with no spasms. My heartbeat must have doubled ever since then because of sheer joy as well as out of fear. I watched Marek closer than any Mom watches their child. It has become a habit that every few minutes I have to assess what he is doing with his eyes and arm movements. Well after we went 24 hrs without a cluster I was almost scared to look at him because I was scared I would see his eyes roll up and his arms go stiff. The pit in my stomach grew three sizes because I never knew what the next hour would hold for Marek. 24 hours passed by, then 48, then 72.....we were on a roll yet the fear, anxiety and tension never let up.
We went down to to one shot a day on Sunday. I told Ryan how nervous I was about this because for 7 weeks now Marek has had a dose of steroids in his system. Sunday came and went, no spasms. Monday we spent the day outside and Marek was laughing the whole day. I let myself for one minute think that maybe, just maybe, I would never have to see my son have another spasms ever again. That is when it happened. Right before midnight Marek was drinking his bottle and in the dim light out of the corner of my eye I saw him move his arms in such a way that deep down I knew what I saw was a spasms. But I tried to stay positive, I started pleading to God to please have that be just a shadow I saw, or my mind playing tricks on me. I turned the light on and watched Marek so closely over the next few minutes, I didn't even blink in fear that I would miss something. Then it happened, his eyes rolled up and his arms flew outward and stiffened. The damn things were back. My heart literally broke into a thousand pieces and I just broke down. It was as if I got the diagnosis that Marek had IS all over again. I had to get my mom at this point so that she could help me since it took all I had to keep it together and to help me count his spasms. For 30 minutes I watched him have spasms after spasms. This was the longest cluster he had had for weeks. I don't understand why they had to come back, why to my son? After Marek has been through so much why would God let the spasms come back?
The next morning I tried to come up with some sort of explanation as to why this was happening. Ryan told me that maybe it was just a breakthrough seizure. Many parents report having spasm freedom then they see a spasm come through and they adjust the meds. I prayed all day that this was just a hiccup. I kept trying to convince myself that his spasms weren't coming back, it was a breakthrough spasms, but I was never able to fully believe that. I had learned my lesson, guard my heart so that it wouldn't break again. Tuesday night, Marek had another cluster of spasms. It never gets any easier watching him go through this. My whole world crashes down around me every time I have to stare at him and count how many times his small body is made to do things he doesn't want it to. IT ISN'T FAIR!
My biggest fear now that the spasms are back is that they will take away all the progress that Marek has worked so hard to gain. Marek hasn't rolled over since Sunday and he is hardly picking his head off the ground when he is on his tummy. I hope that WHEN we get the spasms back under control these skills will quickly come back.
So it has been a crappy week to say the least. I don't know what this means as far as what our next treatment will be but I am eager to find out on Monday.
We ask that you please keep praying for our little guy, this is just not fair to him.
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