ask and you shall receive

Earlier this week I had a meltdown and consequently went on a mission to demand answers as to why Cale was displaying some of the behaviors he had been showing over the last six months or so. My husband called the doctor, because I knew I would either break down in tears over the phone or sulk back into my timid and very non-assertive ways and agree to an appointment that was months out. He called on Wednesday and she agreed to see us today, Friday. I felt a sense of relief knowing that we were finally doing something proactive in search for our answers.

Cale has extreme reflux, or so we have always thought and I still continue to believe. He's had swallow studies performed and has been on the medication Prevacid since he was six months old. We've tried a handful of different medications but none of them have ever been helpful, even the Prevacid, but we were told that if he didn't take it the reflux would get much worse. So, under doctor's orders, he's been on it for over two-and-a-half years. Never once have I thought it cured, or even relieved, the symptoms he has shown practically since birth. As a baby he spit up CONSTANTLY. I remember feeding him tiny amounts at a time and then walking with him upright for hours, literally, in hopes of keeping his meals down. The instant I set him down he would spit up. Over time, when he was about eighteen months old, the spitting up subsided but the physical evidence of his reflux remained, even to this day. You can hear the acid come up in his throat and you can see him painfully try and swallow it back down. For the last six months I have felt that his reflux has gotten worse, but since this is all we've known throughout his entire life, I guess I kind of brushed it off as just another check mark on the list of sucky things he has to deal with.

Going back to my meltdown earlier this week, I finally became fed up with watching Cale have to live with something that interferes with so much of his day-to-day activities. I can't even read him a book without him jerking his entire body in order to keep his meals down. His fine motor skills are already compromised but when you add in the reflux it is almost impossible for him to control any part of his body. At times, the work of having to swallow whatever is coming back up knocks him off balance and makes him fall to the ground. What child should ever have to live with something like that? So, the call to the doctor came next and today we argued our case to look deeper into what might be going on in his little body since the medications were not working.

We got an answer, and even made a plan, but it was nothing like what I had imagined. I honestly thought we would go in there, give a description of what was going on, and then our pediatrician would refer us to a GI doctor and they would scope him and put him on a different, stronger medication. Our plan though, instead, is to travel to Seattle to see the GI doctor. There he will "prove" that Cale either does or doesn't have reflux. Despite his diagnosis, we will also travel to Spokane to see a neurologist. Our pediatrician thinks the episodes of Cale trying to keep the acid down are actually seizures.

Seizures.

Seriously?

I have a flood of emotions running through me right now but the only thing I can come up with to say is that this sucks. It's not enough that he was born premature and has undiagnosed developmental delays, but now we have to add on seizures, too? Seriously? I feel like I just got punched and I keep trying to get up but every time I do I get punched again, and again, and again. I hate this, I really do, and I would do anything to make it better. Now every time I see Cale trying to overcome what I thought was reflux, I am fearful that he is actually having a seizure. Is he having them at night when I'm not with him? That thought alone makes the hair on the back of my neck stand up and my stomach to twist in a series of knots. I don't want my baby boy to be having seizures. I want him to be able to enjoy being a kid.

I feel like I'm back in that place. That place where I don't want to go anywhere, I don't want to see anyone, and I don't want to do anything. I'm back in that place where it's emotionally difficult to be around normal developing children. I honestly hate being here but I don't know how to get out. I want to be happy and enjoy my children the way other moms get to enjoy their children.

It's ironic that just yesterday I chose to focus on a verse about how God made each and every one of us perfect and nothing about us is a mistake. We are wonderfully made. But today I find myself questioning God and wondering what His plans are for Cale. Why did He make Cale the way He did and why this week, a week I so desperately wanted to focus on the positive, have we been attacked with such negativity. My perspective is wrong, I know that, but I don't know how to change it.

How do you rejoice in suffering?