What a whirlwind these past few weeks have been. I am so sorry I haven’t written about Avery’s health updates for a few days. Our family has received a gentle reminder of how important life truly is. Initially, we feared the worst for Avery. Hearing the word mass and knowing it is within your beloved child releases insanity for us parents. After numerous tests last week, she came back positive for Blastomyces, a fungal infection, but a confirmatory blood test showed negative. Now she is positive for histoplasmosis, another fungal infection. We still have zero answers for a treatment plan for her. We do not know anything. It is all very frustrating; however, this isn’t our first time down a new road. We consult with the infectious disease again Wednesday, making the trip to Rochester. We should come up with a fun name for these trips.
These fungal infections are all over our environment, especially in the upper Midwest. Avery is at a higher risk for them due to her compromised immune system related to her underlying diagnosis of pulmonary hypertension. It is nearly impossible to say where she picked it up because it is truly all around us. We, as parents, haven’t tried to restrict her activity, knowing that sets her aside from other kids and can cause developmental problems, not to mention self-esteem struggles. She is a thriving child with four loving parents who allow her to live. We empower her to meet her goals and encourage her through all the challenging obstacles on the way.
I am so incredibly fortunate we didn’t stop Archer from swimming this past year. Swimming sounds impossible with a continuous infusion via a central line. He never once got sick from living the dream and splashing on the sidelines. I would have been deeply disappointed if he passed away, living a bleak life with little to make him smile. Archer man traveled to Washington D.C., Florida, South Dakota, Iowa (in utero), North Dakota, and many weekend family trips in Minnesota. He had flown four times. The picture I shared is him wearing Avery’s dry suit that we got when she was five years old. I cannot tell you how often I looked at the suit and attempted to donate it to another child in need. Thankfully, God nudged me that we may need it again. For four years, it hung in the canvas bag in my basement, people! I still can’t gather the courage to get rid of it. Not until Otto is in the clear, at least. We were gifted this dry suit through Isiah Pudge memorial, who helped us purchase it from a company in the United Kingdom. There are so many memorable blessings in that dry suit.
Last week I visited the prairie wetlands for Raelynn’s last day of class there. They were commencing her 4th-grade year in nature. What a gift that was. She showed me the prairie through her eyes. A teacher reminded us all to stay in silence every day. It is a practice they do with the kids before entering the classroom. It calms them and helps center their attention. Her words were powerful, even though they were so simple. I try to make a point now to sit outside and stay in silence for at least five minutes every day.
If I stay in the silence, I am more likely to see a sign of Archer. That makes me smile. I hate to contemplate everything I’ve missed because of my lack of attention to my surroundings. I let my mind wander so quickly, and it can be difficult to reign back in. Or the daunting tasks! Oh my gosh, those never-ending tasks that are always plaguing our minds. Sincerely all-consuming tasks always block out the simplicity of nature for me. My mind constantly goes a million miles a minute, even if we aren’t in fight or flight mode. Anticipating the next step in life really isn’t necessary, so why am I so focused on it?
It feels like a waste of time to focus on the following chapter. What if that next chapter doesn’t come, but we sat and diligently planned it out just how we wanted it to be? That sets me up for disappointment. Like knock me down and drag me to the door, annoying frustration. Undiluted negativity floods your mind. I’m sure many of you can relate. If I stop attempting to anticipate the subsequent chapter, maybe there will be fewer disappointments that come with unexpected details that we didn’t write in our book called life. After all, we aren’t the authors we all think we are.
Pure gratitude for my surroundings, releasing disappointments, extinguishing expectations, and allowing humble feelings to fill my soul. Those are the practices I am writing into my story. I hope some of you can do the same. If you feel that you cannot, remember where you came from. Remember the day in history you thought your world was ending, but here you are. Recall the problematic memories that plague your mind with regret and forgive yourself, allowing yourself to move forward into the beauty of life.
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