Limbo…

Usually, when I write, I do so once I have already processed something. Even if it is a seemingly small step on the journey, I tend to wait to write until I have wrapped my mind around something, and come to terms with whatever it is. I’m not sure WHY my process has gone this way, I didn’t consciously decide to do so…but today, I’m taking the road less traveled.

Today, I write this post while tears are pooling behind my eyelids, in the hopes that the process of writing will help to release them, and allow me to move through the emotion. To dance with it.

We are still waiting…waiting to hear about Evrett’s current genetic tests which will help us to narrow down precisely which gene we will apply to the government to test afterwards. (That’s how rare his case is–whichever of the 2 or so types of leukoencephalopathy the Dr’s believe he has, there are only about 50 documented cases of either worldwide. So to test the specific genes, and officially diagnose, the government must fund it. Oh joy….we all know how quickly government things go…) We have been waiting since the end of January….that’s all of February, March, and now half of April with no further answers about our darling Bug.  Some parents wait YEARS for answers like this, I understand that such things cannot be rushed…but knowing why such things take time doesn’t always make one feel better in the present.

Patience has never been one of my stronger virtues in life. I can fully admit that. Even though I have worked hard to cultivate it within myself over the past months, with mindfulness, deliberate practice & lifestyle changes, not knowing what exactly my angel has can be so very trying.  I want to revel in the joy that he spreads wherever he goes, and sometimes I can do so with ease. But then there are the other days…the harder, scarier ones, when the “what-ifs” start screaming from the darkness. And as hard as I try to quiet them, they just won’t shut up. When I’m snuggling him on the couch, rubbing his back and running my hands through his beautiful platinum blonde hair, and I feel what could or could not be some sort of abnormality on the back of his head, I tell myself “that’s just the shape of his head, your head is shaped similarly Lace! It’s not a cyst or something else causing a malformation…”…but somewhere in the darkness I hear an answer: “it very well could be one of his cysts, what if something is progressing in there that we don’t know about and could harm him? What are you going to do about it, mama bear?”

Then there are the days like yesterday, enjoying what might have been the last day for this season of toboggan-fun in our backyard. Both boys were out there, the sun was shining, and things were finally beginning to melt. Evy LOVES tobogganing!! He isn’t afraid at all, and his core is now strong enough to handle a pretty quick ride (and even some bumps!!). He squeals with delight, and lights up the world. The only thing is that once he reaches the end of the run, he doesn’t yet know how to bring his own sled back up to the top. His big brother would be able to help him with that though; I had asked him if he would (considering I couldn’t go out at that exact time, Lydia needed me inside) and he had agreed. But, I watched as Cody reached the bottom too, and began to head back up. He walked right by his little brother…poor Bug just standing there, looking hopefully at Cody, willing him to help with the sled, but not having the words to ask. Cody didn’t notice. He walked on by and went about his own fun….and Bug’s eyes dropped to the ground.

My heart shattered.

Moments like that, I just want to make it better. I start to wonder why things are this way for such an angelic little person. I feel things like “this isn’t FAIR!!!”. I feel so angry for him, and then immensely sad almost simultaneously. His life should be wonderful, he shouldn’t have to deal with a brain abnormality!! And then I feel GUILTY. Guilty because he is amazing, and here I am ruining the day with my worry. Guilty because things could be worse for him, and I thank goodness that they’re not. Guilty because every day with Bug, and our other 2 little ones, is a gift…and I shouldn’t (there’s the horrible “s” word again!) be feeling this way….

But you what? I can too feel this way, sometimes.

It is absolutely alright to feel worry, anger on his behalf, sadness, frustration, or anything else that arises. Because yes, we are blessed that he should live a long life…but we don’t know that with a great degree of certainty yet. Yes, he is so happy and physically pretty darn strong….but, he cannot communicate with us the way that he wants to, and that makes him quite sad lately at certain moments. Yes, he is progressing and that is a wonderful thing!!….but we still don’t have medical confirmation that this isn’t some sort of leukodystrophy, which is a progressive disease. And that scares me s*** out of me some days. I must give myself permission to feel such things, I am allowed to worry for my baby and his future. I absolutely am.

Of course I’m aware that more specific medical answers still won’t guarantee anything, because no person on this earth is guaranteed a set amount of years in this life and in this body, or a certain quality of life indefinitely. Life doesn’t work that way. I get that, I really do…

But nonetheless….

All of this waiting sucks.

Limbo sucks.

I want more answers. Time to call the genetics office tomorrow and ask where things are at. They may still know nothing, but phoning to let them know it’s on our minds cannot hurt the process. It’s healthier than sitting idly by and feeling helpless.

As I finish this post, it’s now dawning on me that I actually think what makes waiting so damn hard is the helplessness that tends to accompany it. I think that maybe the waiting itself could feel less suffocating, less consuming, if one doesn’t let the helplessness seep in and pollute everything. Just maybe…

 

 

~Thank you for reading, and for supporting our darling Bug on his journey. If you have a helpful, positive, or supportive comment in mind, please leave one for us! We deeply appreciate you taking the time to be here.

Warmest wishes on your own journey.