At Home and Waiting

It feels good to be back at home. We were discharged from the hospital yesterday afternoon, and now we are left to navigate this wilderness on home territory. Sometimes I wonder if all the times Tyler tells us he wants to go home, he’s actually saying he wants to go back to what he once knew as home, a place of safety where the world seemed more certain. We all wish for that.

Tyler is still struggling all the time. The medications have him more calmed down physically so that, unless he becomes really upset, we usually don’t worry about him hurting himself. He’s getting pretty good sleep. But the shouting, random noises, and head movements are still constant. He’s also really complaining of a stiff and sore back (likely from yesterday’s spinal tap), and he’s dealing with quite a headache. While running some initial tests on Tyler’s spinal fluid yesterday, they found elevated levels of white blood cells. While technically this means he has meningitis, it’s not the viral or deadly bacterial kind that can be so detrimental if contracted. It’s most likely just an inflammation caused by irritation from the IVIG treatment. So that’s what is causing his headaches, and they will subside soon. The doctors weren’t at all alarmed by the elevated white blood cell count, and still felt confident in letting us go home yesterday.

So now we wait for news on Tyler. The blood and spinal fluid tests may take several weeks to a month to get all the results back since they have to go to specialized labs that test for the gamut of rare diseases that Dr. Chrusciel ordered. Also, she assured me that while the IVIG treatments sometimes show quick results for kids, it may take three to four weeks for Tyler to show improvement from the IVIG, if he even will show improvement. So lots of waiting lies ahead of us over the next month. It’s hard to know how to move forward when we aren’t sure what we are dealing with. However, regardless of what news the next month brings, it will feel good to know something.

In the meantime, we are making some hard adjustments at home. We now have a disabled child, and that is traumatic in many ways for all eight of us. Brian and I get stressed out and frustrated. Just when we want to get some rest or try to chill out for a while, we realize that we have five other children who need us now more than ever. The four little ones are struggling in their own way. For them, it comes out as “He just called me a weenie-head” followed by “But she stuck her tongue out at me first.” While some of this is the expected part of any busy household, the unending-ness of it is simultaneously grating and an indicator that they are struggling for attention and affirmation while they realize their lives have been turned inside out, too. Also, the noise level in our house is stressful. When Tyler is resting, everyone whispers and tip-toes around. When he’s awake, we all have to yell at each other to be heard over Tyler’s yelling. It’s a stressor that is hard to deal with because we know Tyler can’t help it, but the rest of us can’t help but become irritated by it. Simple things have changed, like we can’t answer a phone when it rings because we wouldn’t hear or be heard over Tyler if we did answer it. Good thing most people can communicate with us by text!

Last night, Amberlyn (age 7) said to me, “Why doesn’t Jesus heal Tyler?” It was heartbreaking to hear, and I wasn’t sure how to respond. Every one of our children has seen Jesus heal people and know Jesus in that way. My response to her was the same thing I hold on to every day. “I don’t know why this has happened to Tyler, and we may never know. But I know Jesus is good and he loves Tyler. He doesn’t want Tyler to be sick, and he hears every one of your prayers for Tyler. I don’t know why Jesus hasn’t healed him yet, but I do know this. That God has amazing plans for Tyler, and somehow God is going to use this sickness and turn it into something amazing.” Even as I write it, it seems so inadequate for the depth of her question, but I also know it’s true.

Jesus is healer. Jesus is good. Jesus says he’s got this one.

I believe him.