We are closing in on two weeks of Joseph in the hospital in Milwaukee. We are all growing weary. This is our family’s fourth hospital stay since Covid began. Covid has changed the approach to hospitalization, and it affects real lives in and out of the hospital bed. The changes to medical and hospital policies and rules are beyond palpable. It is heartbreaking to tell my children they cannot see their father because no one under 18 is allowed. I then must determine how much to share with Joseph about how his absence and the inability to see him is affecting his children. It’s a no-win situation and my heart aches over what I see it doing to our family and what I am sure it has done to other families around the globe.
Joseph’s digestive system has been playing some tricks on him. After trying to resolve a blockage this week with no luck, it was determined it would be best for him to get a g-tube. He can now bypass his system if needed and drain the contents of his stomach to relieve some pressure. Any sort of procedure gets a bit dramatic when it involves Joseph as we have his INR (how thick his blood is) to manage. He is on blood thinners and has a history of bleeds.
When his g-tube was placed the plan was to also place a plurex (another drain) so that the fluid accumulating from his ascites could also be drained and he could avoid the weekly paracentesis procedure. Unfortunately, they weren’t able to place the plurex during the first attempt. As the days progressed it was discovered that his ascites fluid was leaking out of his g-tube. This afternoon they attempted (again) to place the plurex. Thankfully, this attempt was successful. He has now lost over 22lbs of fluid and swelling since checking into the hospital two weeks ago. Joseph joked that by the time he comes home he will be the bionic man and we won’t recognize him. We’ve let him know we will take him in absolutely any form we can get him. 😊
Now that he has a g-tube and a plurex in place to help make him more comfortable and (hopefully) stop him from getting so sick, we need to address the cause, which is likely the spread of the cancer into his abdominal wall. While he needs to be healthy enough to receive chemo, he also needs to get back on chemo ASAP. It’s a bit of a catch 22. So, although the last two weeks have been challenging and humbling, our prayer is that they aided in getting Joseph as healthy as possible to take on this next round of chemo.
We do believe that suffering has a divine purpose, and we’ve been gifted with the opportunity to pray and discuss this together as a couple over the past weeks. It is painful for me to watch Joseph suffer in such a real way. It is also such an honor to witness him working through the faith he holds as he discovers it in reality and not as a hypothetical. He has been gifted with some enlightening dreams and is steadfast in his conviction that we are entitled to nothing in this life, and that everything we do have (including time) is not to be expected but to be respected and cherished. These discussions and prayers are far from glum. They are heartfelt, humorous, comforting and feel more like the best of romantic dates - spontaneous and outside of time. While Joseph feels a little like he's trapped in the hospital as if it were a prison, these dates help us feel as though we’re wandering hand in hand, shopping for souvenirs through our own story. We are confident our story has more pages to come and no matter how many chapters we get, it will never end. Our current goal is for him to get over this speedbump so he can return home and we can make some more memories.
Please, do NOT be too impressed. This is hard. Our kids are struggling. I am struggling. A priest friend came to visit Joseph and offer the sacraments and all I could think about was the relief that his morning visit meant I could sleep an extra hour in the hotel. Then I felt guilty for a good 24 hours. Joseph wasn’t able eat or even drink water for a good five days, so I foolishly decided I should join him in solidarity. Because what kind of wife eats and drinks when their spouse in literally dreaming about water? Except I’m not sick and I don’t have IVs sustaining me. By 1am on the third day I found myself spending $38 on Uber Eats to meet the minimum order requirement for a pizza I didn’t want from the only place that was still open. I ate one slice and feel asleep.
There are midnight snuggles after nightmares and fights between the kids over who looked at whom with which ill intentions. I came home this weekend to spend some time with the kiddos and we had a great day out at the art store making the most of the weekend and collecting projects to keep us busy. The very next day we didn’t change out of our pajamas. We watched a movie and the Olympics all day long and we ordered in – twice. We just didn’t feel like doing anything. We’re emotionally hungover.
Joseph’s procedure today came out of nowhere. I knew I couldn’t leave these kids and get to Milwaukee in time to be there with him. I also knew my husband needed me with him. I am constantly feeling pulled in directions I cannot go. We facetimed Daddy for prayer over the weekend and he asked the children to pray for mama, “the octopus.” It’s so sweet to hear him lead our kids in appreciating the plates I’m juggling, but even with eight arms -I feel like I’m failing. I want to be a better wife to my husband and a better mother to my children. I also want to crawl in my bed and cry. I spoke with a friend today who reminded me to give myself some grace. I shared with her that I'd been setting the bar really low for myself. I got out of my bed. I put in a full day of work. I made dinner for the kids. I didn’t shower, I didn’t do any of the other things on my to-do list. But I didn’t stay in my bed. I win!
The thing about grace is that it comes right when you need it. Not a moment too soon (in my experience) but always when I need it! When the fear I won’t be able to handle things washes over me, I remind myself that I don’t need to handle all of the problems of Future Holly. Future Holly will be given the grace she needs in the moment she needs it.
Until then, I am doing the very best I can. We all are. This week, that meant the help of friends, family and the help of both my mom and Joseph’s mom. I’m talking to professionals about how to best love Joseph in this, how to best love on our kids in this AND how to take care of myself. So, for today, we focus on the goals of the week. Joseph’s discharge goal is Wednesday. This gives him a rest day on Thursday and then the MKE and Appleton teams are trying to orchestrate him resuming chemo here in Appleton on Friday. I am sorry I haven’t been timely in returning communication. We feel your well wishes and prayers. They are my lifebuoy, pulling me to the surface when I fall under. So, thank you! If you aren’t sure if you should reach out, please do. Your love, wisdom and humor is always welcome.