Our hospital adventures are ended for the moment. I wrote last week on Instagram that:
Things feel all hazy and “off” to me today. I’m struggling to process all that was learned yesterday. Josiah is running around, happy, having one of his best post-op experiences to date. Ellianna is feverish and ill and has stayed curled in my lap all morning. Josiah’s diagnosis is life-long. We know that in a year or so he might find a “new normal” with treatment, but yesterday marks this transition from “it might get better with xyz” to this being a constant presence for the rest of his life and “here’s how we help him be comfortable/as normal as possible” and I think, there’s a bit of a grieving process with that. It’s bittersweet, these things. [The things they are diagnosing for Ellianna mean] we will be waiting six weeks to two months to know for sure before they can attempt treatment. It’s overwhelming. And hard to watch. We as mamas, we just want to help them feel better and it is the worst feeling in the world to be helpless. Keep us in your prayers as we go through this adjustment. Xoxo
Now a few days out, the haze is starting to fade.
Josiah is such a monkey. And the problems he faces are almost invisible to everyone, even me, on a day like Thursday was. He has boundless energy, that one. He bounced back brilliantly from surgery and was most definitely his monkey self on Thursday. I found it a bit disconcerting honestly, as usually the day after a surgery he is quiet and cuddly. A day after they basically told us that his nerve damage was extensive and life-long; that there was nothing they could do to to heal the damage, just manage the effects. It won’t be so noticeable now, while he’s young, but as he gets older…it made me grateful all over again that we have chosen to homeschool him. Life can move on his schedule, around his needs. He was being himself that day, his happy, joyful, peaceful self, and once I got over the feelings of weird disconnect, it was almost as if he was saying out loud, “Don’t worry mama. I’ll be fine.” I was grieving for him a bit, and there was space for it; but I also caught his hopeful energy too. We’ll figure this out.
I snapped the picture of Ellianna a week or two back. The children were playing dress up and she had put on her brother’s army uniform. It just seemed fitting for my fighter of a girl. After months and months of detective work, I feel like we are finally closing in on a culprit that would explain her continued illness. They added cyclical neutropenia to the potential autoimmune hepatitis, and the blood tests that eliminate or confirm both are the same. They changed her anemia status too; it it now anemia of chronic inflammation (drain on the system), not iron-deficiency anemia (red blood cells not carrying/picking up iron), which is a wonderful improvement.
I at least know from all this that we have done our best job with her gluten free diet and supporting her from a rich whole foods/plant based approach- her body has the best tools to continue fighting, and it shows in the healthy Celiacs numbers and the anemia status being switched. That is an incredible burden off my mind. We have struggled so much to adjust to this new way of life, the incredible costs involved, (which is a whole ‘nother blog post! Why?!?), and all the while, I’ve been so troubled that we were “doing it wrong” or causing more harm than good because of my ineptitude, and it is just huge to know that we have crossed this intense milestone. It has brought peace and encouragement to keep working at it and stay the course.
It is hard to wait yet another six week to two month rotation as they study the tests over time for her before they can begin treatment. She has been so sick for so long with no relief, and having to wait even longer…you feel so helpless. Her illness, too, is hidden and invisible, in its way. She overall looks better when you catch her on a good day; at the height of her cycle she looks as drawn and pale as she did at the height of her mono. I notice it every time I do the children’s seasonal clothing switch. For the last three or four times, I do no size changes for her- just exchange long sleeves for short sleeves and the like. She is still in the same clothes as she was wearing when she got sick two years ago. It is noticeable too when you see her around other five and six year olds. She is often a full head shorter and noticeably smaller. In our parish, she blends in with the three and four year olds, not the her own age group. Her illness is so intense and yet so spread out that you can almost think she’s okay until these things stare you in the face. Her blood tests certainly show the difficult truth too. Everyone freely admits that she is one sick little girl, but none of us can seem to grasp the root cause of it all.
It is hard, living in the mystery. I often second guess myself- should I let her do this or that? Will this make it worse? Generally, I trust her and her own intuition. If she feels up to running and monkeying about, I let her. I often make space for her to rest quietly when I can tell her mind and her body aren’t agreeing with one another and the shadows grow long under her eyes. Together we have learned a dance that seems to be working. I can imagine how difficult it must be for her sometimes, watching all her siblings go and go and wanting to be with them, while her body is saying no, not today. I dearly hope that we will find the root cause of all this, be able to treat it, and she return to health. Meanwhile, we wait, and we dance in the rain.
I feel like I write from the transitional space here far more often than I would like. I am coming to understand, however, that most of the journey is transition, a letting go. As parents we simultaneously train and raise our children while ever loosening the ties, so that when the time comes they fly to worlds we can’t even imagine, and so it is the same living in this hazy world of sickness and illness. I don’t know where either of them are headed any more than I know where my other four are, and all I can do, must do, is walk beside them and love them. It is enough.
(For the record, I deleted the last two posts with videos. They served their purpose at the time for those of you who wished to stay in the loop, but my introverted self can’t stand the thought of them hanging out on the blog any longer! *blush* So I am taking executive action as the creator of this here space and consigning them to the waste basket.)