July 21, 2016
It has been six months since that amazing day in January when my daughter came back to me. Over the months we've had some setbacks. Symptoms return for a few days here and there. As the flares pass we quickly forget but when they hit it all comes rushing back and in those moments my soul is lost. My child is back in that dark place and we have no way of knowing when or if she will get out.
In the beginning I didn't know what to do. Mind racing. How did this happen? What am I supposed to do? Was she exposed to an infection or virus, has anyone around her been sick, did she have exposure to a toxin, is she reacting to a food or chemical? How do I get her out of there? The fear. Probably for both of us, is almost paralyzing but we don't have time to stand still. Act quickly. Fix it. Before inflammation takes over. Calm her. Heal her. Help her. Trying to throw your drowning child a life preserver in the dark, winds whipping, waves crashing, the floor beneath you heaving, and you don't know which direction is best.
In time we are gaining confidence. Trusting that the odds are very good that she WILL come out of it and that it will only take a few days to make that happen. A week-long flare shook us and a two-week brought us to our knees, but we got back up and we trusted it would be okay. Not blind, unquestioning trust, but enough trust that at least keeps the floor from heaving, our feet planted firmly on what we've learned. Pull back on activities. Earlier bedtime. More supplements for a few days. Extra salt baths. More oils. No sugar. Good food. Deep breath, we're moving past it......and then we have her back. Breath.
In April we got follow up blood work done and it was great news. A relief. My daughter is okay and getting better. Only one more number that needs to come down so one new supplement to help with the stubborn insomnia, a new RX for the inflammation, and we were on our way.
And then, one afternoon, the screaming and the crying. "Mommy WHY do I have to have this? WHY am I only one? I don't want to be different! I am the only one in our family. It's not FAIR! I don't want to have this. What other kid has to have NEEDLES in their arms for blood work? Why does it keep coming back? I hate THIS! Will it ever go away and not come back? Mommy, will it ever just go away?"
Helpless. Unable to protect her. Unable to take this away. I would carry it myself if I could. One hundred times over if I could spare her. With healing comes hope but with hope comes despair in the moment when fears are realized. But now, NOW we know what to do. It is going to be okay. Talk it through. Remember the healing. Remember, my child, how far you have come. How much you have endured. How bad it used to be. You are strong and brave and healthy and amazing. This child of mine. You are okay now and we know what to do. We will weather each storm.
This week we had our second round of blood work drawn and next week I will meet with our physician. My daughter's appetite has dropped fairly significantly over the last few months so we are watching her closely. A slight child she does not have much wiggle room with her weight but so far she is not losing. A persistent clothing sensory defensiveness lurks always just under the surface but most days are good. Sleep has been steady lately but since I just wrote that she'll be up within days (or hours). Shyness still drives her to avoid eye contact and whisper in my ear instead of speaking out loud in front of others. There is something we are missing but I can't put my finger on it. When she has a great day I see all of her. Embracing life. Wearing whatever clothes she wants to and talking to people without hesitation. For now though, we are amazed at how her life has changed. Normal daily activities are now done without issue for the most part. Getting dressed, brushing teeth, brushing hair, putting shoes on, getting in the car, buckling in to her car seat, going to bed...all done without incident most days.
We shall see what the blood work shows next week but I feel positive that we will see further evidence of healing. Maybe then we can begin to take deep breaths and relax a bit more. Not too much but just a bit. Today we are filled with hope.
