Ohhhh 2020. Where to begin, where does anyone begin right now? With an UM. Or a blank stare. Or a stutter. Or a swear word. A meme with an explosion or disheveled hair in the middle of a house where a bomb went off, OR….. Take your pick, I know we have all done all of them, I know I have… well, the disheveled hair is everyday. But whatever.

Up until March, we were traveling to and from Denver, for docs and infusions, an obscene amount –  home 10 days, gone 10 days. I’ll never forget our drive home from Denver as COVID was hitting the U.S. I remember being in the middle of Montana, looking at Daniel and saying, “I think this is happening; we need to order some food and supplies.” We nervously chuckled, feeling ridiculous, as we found stock of food items and such on Amazon and placed our orders, feeling a little bit weird, but thinking, “Well, if we are over-prepared, so be it, we’ll eat it anyway.” Within a few days of us being home, quarantine started and, well, we have all been a part of that nightmare.

Our next 10 days were chaos of trying to get infusions approved for home through docs and insurance and the home health company. We were on pins and needles, as it was home infusions or no infusions at all. All the while, trying to make sense, with the rest of the world, of what was happening. Miraculously, it all came through. Silver lining for us, was that we got a bit of a breather. Just to be home. And home. Oh wait, and home. 

In August, Mayo Clinic rescheduled Henry’s much-needed clinic week to hopefully get further testing done and specialists seen. We also needed to be seen by his docs, current and new, in Denver. It was risky to go. And it was risky to stay. So we loaded the motorhome with enough food and water and supplies to last us the entire trip, so that our only stops would be for gas and ice, and, of that, we were successful. What a surreal time to be on the road. A crazy amount of people were out in some areas, and then some were eerily quiet. It definitely has been the year of RVing – campgrounds were more crowded than we’ve ever seen. And, truly, we have decided we would rather travel alone in the winter months (minus slippery roads) with just us and the truckers, camping in snowy closed campgrounds (unbeknownst to us), liquor store parking lots, truck stops and Walmart parking lots and empty campgrounds. HA. But, no, really.

Our route was home to Denver to Rochester, MN to Denver to home. We calculated that we drove almost 5,000 miles in 3 weeks. UM. The weather during these weeks also matched this surreal time – above us on the freeway were flashing “Ozone Alert – combine car trips and fuel up after 5pm, stay indoors” signs in Denver, 100 degrees, thunder that shook our motorhome, lightning, downpours, severe wind and a few random beautiful days where we got to go a few walks. Our kids were rock stars. They love being on the road, in the motorhome, no matter the outside insanity. Never once complained of a driving day; it was the opposite. No matter what the day looked like, they were happy we were together. Ellie said, “This is the best motorhome trip EVER.” Winning.

It’s daunting to try to summarize and explain the outcome of these appointments. We had multiple appointments per day, and the days without appointments, we were driving. There are so many moving pieces to Henry and his care, that I feel like a ginormous roadblock is in front of my brain when I try to speak about it. What I will say is that our ultimate, always ultimate hope and prayer, is that we will find a specialist, get a test done, get results and they will say, “We found it. We found the ONE thing causing all this havoc. We have our smoking gun and here is the fix.” We will never stop hoping and praying for that as we know miracles can happen. However, as of now, Mayo testing has resulted and final consultations have been had – there is no smoking gun. Did he confuse Mayo Clinic? Yes. Per usual, his test results don’t quite ever make sense – “This is abnormal, usually when this number is low, this other number over here is high.” And so on. They confirmed some issues we knew about, they ran tests that only their lab can run, they ruled out scary things. And they had some new findings. One of which was an issue that, when low, can cause neurological issues of varying degree and a plethora of symptoms. We just started a trial of a medication for this, which can be complicated as it involves getting the right type and dose to cross the blood brain barrier – but, since his symptoms so severely overlap – we just don’t know if this is the cause. We, again, hang on that fine balance of having hope, but having practical, realistic expectations so we are not crushed if it doesn’t work. It’s a very tricky place to be.

When Henry’s rapid decline occurred summer of 2019, it likely kicked off a number of issues that we have uncovered and will continue to uncover. We were fully aware that we could walk away from Mayo Clinic with no new answers, which was such a risk to us. But also a risk to not find out. Our prayer was that if we didn’t get a foul swoop answer (which was a long shot, to say the least), to walk away with at least a few more puzzle pieces to click into place. We did not walk away with nothing. We have a few more pieces to add to our puzzle, for which we are thankful, and yet again, a few more pieces that bring more questions, that aren’t quite ready to click in yet. Now, can I say that I haven’t felt horribly disappointed and discouraged and tearfully angry? No. Was it necessary and beneficial to go? Absolutely.

So. We are back home. Ellie is doing what she does best – finding frogs. No metaphor there, just literally, searching the property, nooks and crannies, for tree frogs, holding them, poor things, chasing them, squealing with joy EVERY time she finds one (even though she finds several a day), naming them the “best names ever” (Greenie, Jumpy, Cutie, Spotty), making them homes out of anything and everything, then letting them go – and we have to say goodbye out loud to each one. She is a combination of unicorn, mermaid, princess and frogs and mud. OH this girl, there just aren’t enough words. She is so loved. Home infusions have been re-approved. We have started homeschool for the year. And in doing so, my mind was brought back to last September when we started homeschool. Henry couldn’t even start. He was in such a scary place, and still is in many ways. However. He did all his first day lessons. In the first day – what a drastic change to last year. His team in Denver is amazing – he is where he is today because of them. As a team, we discussed his percentage of improvement since we started the IVIG program. Overall, he is at about 50% improvement, considering all areas. This is no small victory; this is huge. This is while still on 24 hr IV and long IVIG infusions every other week (which I am now mostly administering myself) – and this will continue for the unforeseen future. I have days where I want the rest of him back. RIGHT NOW. And it’s sad and devastating if I think about how far we have to go and what I miss about my son that is sitting right in front of me. I miss him so much that it physically hurts. Then he’ll pop into a moment of clarity and I’ll hear his sweet little voice and he’ll give me just a long enough hug that I can take a deep breath and keep going.