Heart failure. That’s my diagnosis.

According to the American Heart Association:

“The term heart failure sounds like the heart is no longer working at all. Actually, heart failure. . . means that the heart isn’t pumping as well as it should. Your body depends on the heart’s pumping action to deliver oxygen- and nutrient-rich blood to the body’s cells. With heart failure, the weakened heart can’t supply the cells with enough blood. This results in fatigue and shortness of breath . . . Everyday activities such as walking, climbing stairs or carrying groceries can become very difficult.“

In January, I went to visit my primary care doctor for an annual check up. They noticed that my heartbeat had become irregular. I didn’t know it at the time, but that moment was the start of a new and sometimes scary and really confusing path.

My doctor left the practice right after that to head in a different direction, and I began searching for a new one. That took awhile as it’s very hard these days to find people accepting new patients. Then the long wait for my appointment day. By April, when I finally saw my new primary care, I had also started experiencing some discomfort and a number of symptoms that indicated possibly serious problems. Over the past two weeks, I have become increasingly uncomfortable as breathing has gotten harder and harder.

Since that appointment day in April, we have been doing tests, seeing a cardiologist, and starting to learn about things like TIA’s (transient ischemic attacks, sometimes called mini strokes or pre-strokes), reduced ejection fraction, LVH (left ventricle hypertrophy), a too-high percentage of PVCs (premature ventricular contractions), dyspnea (shortness of breath), pulmonary edema, Beta blockers, diuretics, EKG’s, and Echocardiograms. We have had to pour hours into research as we try to understand new terms and figure out the right questions to ask and which tests to request. It’s still an ongoing process.

None of the other 60-80 appointments per month, or the hours required to keep scheduling new appointments for kids has let up. Both our ministry, The Shepherd’s Crook Orphan Ministry, and our family remain in financial crisis. We cannot pay our water bill or our power bill, buy groceries or curriculum for starting summer school, or cover a long list of other needs.

I’m tired. My body feels weak and fatigued and breathless so much of the time. My brain is sometimes foggy and struggling a bit to complete daily tasks or understand things being said to me. Just writing this blog post has taken so long and required so much focus and energy as I try to make my brain work. My mind is sometimes consumed with fear and discouragement about the future now and how to care for this beautiful family who needs a mom who is strong and clear-thinking and organized.

How did this happen?! Why did this happen!?

A dear friend (although we have never met in person) sent me this book a week or so ago. And this hymn, Dear Refuge of My Weary Soul was precious to me this morning. If you’re struggling with anything at all (and, truly, who isn’t?!), I would encourage you to click the link listen to it and let the lyrics soak into your soul. I held to these two verses with both hands during my quiet time this morning:

But oh! When gloomy doubts prevail,
I fear to call Thee mine;
The springs of comfort seem to fail,
And all my hopes decline.
Yet gracious God, where shall I flee?
Thou art my only trust;
And still my soul would cleave to Thee
Though prostrate in the dust.

Hast Thou not bid me seek Thy face, 
And shall I seek in vain? 
And can the ear of sovereign grace, 
Be deaf when I complain? 
No, still the ear of sovereign grace, 
Attends the mourner’s prayer; 
Oh may I ever find access, 
To breathe my sorrows there.

The day we got this beginning of a diagnosis, Scott and I slipped quietly into the same special coffee shop we visited the day we learned he had cancer back in 2016. It was comforting to sit together in this familiar place, holding hands and staring at a sunbeam illuminating this fresh flower on the table as we began trying to process what this means for us going forward.

Emotionally, I’m still in the middle of processing all of it and trying to even identify what I’m feeling. There has been very little time to sit around and ponder, explore, or cry, so I haven’t made a lot of progress in this area yet. But that’s okay. I can accept that and move at whatever pace is right.

Practically, we are working on finding answers to what has caused this in my body and how to best treat it. It doesn’t appear there is a cure, but we hope to find treatment that will return me to full function. I have more tests coming up and will see a new cardiologist on July 3. I see a neurologist in October (the soonest opening anyone had) about the episodes that seem to be TIA’s, and I will continue taking steps to care for myself the best that I can. Remaining active and continuing my cardio workouts is increasingly hard, but also really important, so I keep trying. And we keep looking for ways to even better manage the stress in our out-of-our-control, high-stress life while still caring for everyone.

And I know that the Creator of this heart inside my body is also the good and loving Author of my life. He is directing all our steps. He is holding me. He is holding all my babies and my husband. I continue trying to lean on him in all the areas of need, and trust the faithfulness he has proven to us over and over again through the years.

Welcome to this new season in our journey if you’d like to follow along.