"Are You OK?"

People keep asking if we are "ok", and we don't know how to fully articulate all of our feelings. We have been answering, "ok-ish", because it seems to strike the right tone. We aren't falling apart all day, everyday. In fact, we will have stretches of hours that seem normal, where we forget about the difficulty ahead of us. There has been so much work to do that we simply can't curl up in a ball on the bathroom floor and sob. Ain't nobody got time for that! Andrew and I are both spending hours each day working Oliver's needs. We are wartime parents. We thought it was rough out there before, but we truly had no idea. We leveled up and it isn't easy.

Oliver swinging in the sunshine

There is a staggering amount of work to do. Feedings to chart. Diapers to change. Doctors to call back. Appointments to schedule. IEPs to get organized with the school folks. Nurses to train. The work is a tangible way of processing the emotions and the new reality.

And there is raw emotion too. On Monday night Andrew, Oliver and I were snuggled in his bed reading books. I looked over at Andrew, half of his big tall body on the bed and the other half on the floor. I saw the tears in his eyes,  glistening with the dim light in the room. As he was reading through "Where The Wild Things Are" (for the thousandth time), he got so choked up he couldn't get out the words.  Those were the tears of a heartbroken father. I have written about that face before in a Father's Day post. So I reached across Oliver's weak body and took the book into my hands. I finished the story with "And it was still hot", and closed the cover as Andrew just wept silently. What we've learned is that when one of us falls apart, the other one tries to carry on until we can get our emotional footing again. Are we ok? Well, no...we are ok-ish.

G-tube pump is in his book bag so he can move around while he gets hydrated 

The information we (think) we are ready to face is elusive. Do we debate the pros and cons of getting a formal MNGIE diagnosis vs. just having some kind of other debilitating Mitochondrial Disease? We talk in impossible probabilities. A friend calculated the odds were 1 in 17 billion, which seems so ridiculous I hesitate to type it. He was calculating those numbers becuase he started a Gofundme page for us. This has been incredibly humbling to accept. Apparently, I am not as comfortable with being vulnerable as I thought I was. Oliver's story is now so much bigger than the three of us, and the implications of his care have escalated to a point that it is going to take a figurative (and literal) village to get through this. We are so thankful that last year we finally set-up Oliver's Special Needs Trust, where all the funds from Gofundme will go. We have been so deeply moved by the deluge(!) of food, gifts and support. We have no idea how we could express our gratitude. We can promise that when we fight our way out of this, we'll pay it forward in a way that will make you proud.

And now for an update on our sweet boy! Oliver's pain is well controlled, and for the first time in a long time he is mostly happy and smiling. 90% of the time he is content, which makes this mama happy 100% of the time. He is eating well (eating 1700 calories a day isn't that hard after all), but has not had as much success as we had hoped with liquids. The g-tube is working well for water feedings and for medication administration. We still feel he is at risk for aspirating, which is super serious because it can lead to life threatening pneumonia. Dr. Gershon highly recommended we see a GI specialist before we left the hospital. We did and the medication they put Oliver on (off label since it isn't approved in pediatric patients) is working really well for his constipation needs! We are hopfully finally off the terrible carousel of Miralax, enemas, suppositories, Senna and serious stomach pain. For the last few days, Oliver's digestive track seems to be more balanced than it has been in the last five months. This is also helping with the urinination as well, meaning we aren't having to catheterize him as much as we thought. He is sleeping 7-8 straight hours a night. Praise the Lord! The sleep deprivation literally almost killed us. It appears he has gained a pound or two and for that we are incredibly thankful.

All of that is great news, but we still have challenges ahead. His eyes are wandering more and more, and it appears in the past few days his vision has already declined. He is often limping and looking to be in pain when walking. We aren't sure if this is part of just being inactive for so long, or something more serious. He is often hunched over when walking (as if he is an old man) and has lost almost all of his stamina. We're trying to be patient as we wait for the genetic testing to come back, which will either confirm or deny the MNGIE diagnosis. Sadly, the more we have learned about this kind of Mito Disease, the more terrified (and I do not use that word lightly) we have become. It is breathtaking to stumble upon recent blogs written by sufferers of the disease and email them, only to find out they have already passed away.

It is time to sign off, because Oliver needs us. In line with the advice of Elisabeth Elliot, inspired by an old Saxon poem, we are just trying to do the next thing. And truly this is good advice for almost any hardship that any of us face...

Do it immediately;
Do it with prayer;
Do it reliantly, casting all care;
Do it with reverence,
Tracing His Hand,
Who placed it before thee with 
Earnest command.
Stayed on Omnipotence,
Safe 'neath His wing,
Leave all resultings,
DO THE NEXT THING