Lately, I’ve been feeling lost in myself. Every day comes, every hour passes, but I still can’t seem to find myself. I don’t know where I should be or what I should be doing. There is no playbook to tell me my next move. Today I told a friend that this pulmonary hypertension battle seems like a novel that will never end. That eviscerates my soul. I know our battle is not done and will continue for years. I hate thinking of growing old and having to watch my children struggle with their children with the same disease as I once did. There is still a gene mutation that is unidentified. It is inevitable that this disease will affect future generations in our family like it once did ours.
Avery had her 6-month appointment today. Driving to Fargo I reminisced what it was like when we first started this Pulmonary Hypertension journey. I was talking to my best friend at the time on the phone while driving to Fargo to meet Brandt and Amanda for Avery’s appointment. Brandt was working on a church in Fargo at the time and Amanda brought Avery to her appointment. On the phone, I told my friend, Amber, that my gut was telling me Avery had Congestive Heart Failure. Not knowing much about that disease, the cardiovascular system in-depth, or even pediatric illnesses, that is what my gut was leading me to. Sure thing, her diagnosis was revealed, not congestive heart failure, but right-sided heart failure which is often associated with Pulmonary Hypertension due to the increased workload on the right side of the heart. How did I know this was the case? I know it’s not “Congestive” but regardless, I knew it was some type of failure, but we were always told it was Asthma. This is when the strange intuitions, or God’s plan, started revealing themselves to me. Not only had I been the private duty case manager, RN, for years prior to this, but now I had private duty nursing in my own home. What. In. The. World. I asked myself, but just wait, God only gives us what we can handle right? My faith was tested then, just like it has been lately. However, I also found my faith again at this time. It was once lost, but then I found it. Avery’s appointment today revealed the same findings as it always has. The increased pressure and properly working shunt. The shunt I had asked for immediately when Archer was diagnosed in November of 2020. We were told that wasnt the standard of care for treating children with pulmonary hypertension. They must first fail on intravenous medications and then the shunt is an appropriate intervention. Why didn't they listen to me? Why did my son have to leave me so soon when the picture was painted on the wall? We all knew how well Avery was doing with her POTTS shunt.
I was feeling pretty down after her appointment. I should have been ecstatic about it. Another appointment is behind us. Six more months of a clean slate. That wasn’t what I perceived it as and I can’t pinpoint why. I think it’s because I long for Archer to have a six-month clean slate. I wish my strength was solid right now so I could rejoice in the good news, but I just can’t find that in me. On the way to Fargo today, my van was embarrassingly filthy with garbage. What makes children think that the car is any different than the house? A sucker stick doesn’t get thrown on the carpet in our house, so why do that in the car? We don’t leave water bottles laying around waiting for the hairy mold in the house. Why do you do that in the car? My anxiety has been revealing its nasty self in the form of OCD tendencies lately and my grotesque van was all around me. I was trapped in it all day. It drove me nuts!
After we got home, I couldn’t handle it anymore. I filled up a grocery bag of garbage from my van. Most of you may think a grocery bag, c’mon girl, I can fill a garbage bag! If it had been a garbage bag, I wouldn’t have made it to Fargo. A small grocery bag of trash is enough to set me off. I took the dive under the seats, basically laying on the floor of my van to reach all the corners to gather every single sucker stick, straw wrappers that are broken into a million pieces, and who knows what else. When you take that deep dive, you’re bound to find something you’ve been missing for a while. I sure did. I found Archer’s left-hand head glove that I purchased months ago. I have been looking for this glove since I purchased the darn pair. He lost it right away. I was so bummed because they were such sleek gloves with buckles, race care gloves as he described them. I’ve had the right glove on the shelf in our porch for some time because I knew I would find it eventually, but the thought did cross my mind that it had succumbed to some big snow pile in a parking lot. What’s lost was once found. I found his glove when I needed it most. I’m so fortunate I found it today and not any other day.
Finding something that you thought was long gone reminds me of my faith. It has been an uphill battle for as long as I can remember. Relating a lost glove to my faith can seem petty, but in the grand scheme of life, I needed that glove for my own security, just like I need my faith to get through the day. I know that glove hasn’t been sitting there since he lost it. I take that under-seat dive at least once a month and it’s been missing since October. I don’t know how it got there. Realizing it was so close this entire time humbles me. It has been right there, just like my faith. All I had to do was get irritated enough to go looking for it. I ask the Lord what to write about when I feel like I’m coming up short for words. The word prophesy lingers in my mind. I begged the Lord for a miracle so that others could look at Archer and see that miracles can really happen. That wasn’t the miracle that we were granted. That wasn’t God’s plan for Archer. His plan for him all along was showed to us. Most of us don’t get that opportunity to look back and actually rejoice in his plan and give God credit at the same time. Archer proved us proved us over and over he had faith that would inspire others. When he took his fall from 14 feet, he only fractured his skull. No broken extremities or cuts. He didn’t even bleed! He later told me that he saw Jesus when he fell. A two year old telling us this could have been a bit hindered by imagination. Did his sisters tell him to say this? Who knows. I don’t really care. Archer was out of the hospital within 36 hours from his fall. Believe it or not, his verbal skills significantly increased after the fall.
A while after that occurred and I went back to work. I started telling my daycare, my friend, sister from another mother, cousin, my twin, whatever you want to call her, that I thought he was going to end up with Asthma because his coughs went on for days. Whenever he got ill, he coughed, and it wouldn’t let up. I recall saying “I’m sure it’s not pulmonary hypertension, but it’s likely asthma.” This was probably two years before he was even diagnosed. Archer was placed on this earth to show all of us what prophesying is. I truly believe this was God’s plan for Archer. God spoke to me through my son. The definition of prophecy consists of making predictions, making inspired declarations of what is to come, reflecting communication from God to prophets, to speak as a mediator between God and humankind. Thanks google. As I type that I visualize the bells and harps in heaven playing loudly. There you have it. I’m just going to sit with that. That realization is pretty heavy on my heart. Simply typing my thoughts, what’s lost was once found. I found my faith again. There is 2 year old Archer, taking in the word of God at Otto's baptism. Thank you, Lord, thank you readers, and thank you Archer for losing that glove, but putting it back exactly when I needed to find it.
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