Monday, December 11, 2017

I Pray I Never Forget...

It has been SO long since the last blog post. I’ll chalk it up to a rough year…but that’s a whole different topic for a different day. Tonight I’m writing about Steele’s last injection and our experience around it- because its one I pray I never forget. Admittedly, even though the drug he is receiving is changing his life for the better, I have still lost track of how many injections he has received, and I couldn’t begin to tell you on which dates he received them. But this one was different, and here is why….
I made a comment to another mom recently, whose daughter is in the same drug trial as Steele, that as Steele gets older his trial appointments get both easier and a lot more difficult. Easier because he is old enough to understand instructions better and knows how to do what they are asking of him. But, much more difficult because now there is also an element of anxiety present that hasn’t been before- at least not that we have really noticed.

As you may know, when people go under anesthesia when they wake up there really is no telling how they will respond. And just because they respond one way one time, it doesn’t mean they will respond that way every time. We have noticed that the more drug required to knock Steele out, the meaner and more aggressive he is when he wakes up. Like I said before, as he gets older he is starting to become more aware of things, and he is realizing that he isn’t nice when he wakes up sometimes even though he doesn’t mean to be. It is completely out of his control.

For the injection prior to this one, he woke up incredibly irritable, emotional, and just not himself. And he remembered acting that way. So in the weeks leading up to this appointment Steele would casually mention here and there that he was hoping he didn’t act that way again. (We have told Steele that it is not his “fault” and that we know that it is medication that makes him act this way. We extend him grace and forgiveness for those moments.) I explained to Steele that it may or may not be the “silly juice” they give him before they take him back that makes him feel so different, and that maybe we should pray for wisdom in deciding whether or not he should have it (as it is optional). So for the few weeks leading up to his injection, that is what we have done.

Fast forward to the night before his injection. We always put the boys down before we go to bed and let them fall asleep and then go to bed after them. We laid them down as we always do, and went to the other part of our hotel room to watch TV. When we came in the room where the boys were (much later) we found Steele just laying in his bed- wide awake. I was surprised he was up, since I didn’t hear him, and asked him what was going on. He began to fight tears and I knew the anxiety part I mentioned was definitely present. He was trying so hard not to cry and telling us that he really didn’t want to be mean or ugly to us or the doctors and nurses. He said he didn’t like to be out of control and that he wanted so badly to wake up and be his usual self, but that he also felt like God was telling him to take the “silly juice”. We agreed that if that’s what God told him, then that’s what we would do! And we prayed over him. We prayed with grateful hearts that God had answered Steele’s prayer seeking wisdom, and we prayed that God would help Steele when he woke up the next day- that he would hear the cry of Steele’s heart to be kind and not be “out of control”. I snuggled up next to him and soon he was asleep- he tossed and turned a lot that night but he finally got some rest. 

The next morning we were up very early for his injection. When we got to the hospital it was business as usual- as I said I can’t remember how many times we have now done this but at this point we “know the drill”. Part of our responsibility in the trial has been to fill out paperwork and answer questions about how Steele is doing. This paperwork can be tough at times because it specifically targets items Steele can and can’t do (I am intentionally being very general and not specific). It is difficult to circle the number that says he can not walk or run or jump. As we progress through the trial, there have been changes or updates to the trail criteria, and for the first time at this appointment, Steele was asked some of those same questions. As soon as I realized that the questions he was being asked verbally were the very questions I had read on my paper my heart sank- I knew what questions would come. 

I listened to his answers with a lump in my throat and tears in my eyes, but not for the reason you would think. At first, I was fearful of his responses. I was afraid that he would become sad or emotional when replying and I just hurt to think of him going to that place. But then I listened, and I heard my son answer those questions in a way that filled me with joy and gratitude. He proceeded to tell the coordinator that he couldn’t walk, but he could roll. And when she asked him about running his response was something like this….

I can’t run like the other kids run. I run in my own special way. I can go very fast. I can’t do all of the things the other kids can do, but the other kids can’t do all the things I can do either.

Wow. What an incredible answer- and it left me so humbled. To be able, at 5 years of age, to answer with such a positive outlook. How often do we look at the bad and not the good? I know I can do that if I’m not careful. I was in awe. It was a moment I pray I never forget.

Then it came time for the “silly juice”. Steele HATES the taste of it (I’ve heard its beyond awful), and cries every time he takes it. But he got it over with and soon it was time for them to take him back. He was in a great mood when he left us and talking the nurse’s ear off about Lightning McQueen. We went on our way and I remember talking with Beau in the elevator about my shock and surprise. I imagined that the separation part would be much more difficult (as it was the time before, Steele was screaming and crying leaving us) especially with the anxiety he was feeling the night before. We had time to grab some breakfast in the cafeteria, and very quickly our buzzer was going off (meaning it was time to come get Steele). It seemed much quicker than injections in the past. When we got back upstairs we were greeted by the doctor who took us into a room and told us that everything went great! He said out of all the times he had seen Steele, this was by far the best and most relaxed he had been. He was chatty and helpful and even held his own mask to go to sleep! Again, Beau and I were surprised given the conversation we had just the night before. Then it was time to go back to see Steele. I am thankful to say that when I saw him he was smiling, with a popsicle in his hand, and was his usual Steele self! There was not aggression or sad emotion, no screaming, crying, or hitting. Just my Steele.

I am so grateful that God heard that little boys prayer and saw fit to answer it in the way He did. I am still amazed at the little details that He cares to pay attention to. It may not seem like a big deal to some, but to Steele that was HUGE. And because it was important to him, it was important to us as his parents. I pray I never forget the way God answered the cries of a little boys heart, and in doing so really reminded us that He is always there. Amen.

<3 Lindsay