Today’s goal for me: Make sure Ron is taking deep, cleansing breaths. He has a lot to manage around here. At 5:00 AM he teaches Spanish to Matthew. At 6 he starts breakfast and medication routine. At 7 bathing and dressing the kids and himself. At 8 he left with Kari for CHOP Philadelphia. (More on that later) At 3PM he arrives at home and gets Kari settled in her bed. At 3:15 PM he whisks Matthew out to car for CHOP Lancaster appt. At 5 PM he arrives home for dinner and to breathe before heading to pharmacy for medication. Then home for Kari bath, Matthew bedtime, and take a moment to find out how his wife is doing, put Kari to bed then crash himself – before a new slate of activities begins at 5 (Matthew’s wake up)! Ron is my hero!!
This crazy house is definitely sustained by the grace of Jesus through family and friends of abundance, a bunch of laughter and all 5 us (including my dad) now getting sleep at night!
Every day my pain is lessening, the excruciating pain pre surgery is gone. The pain from surgery is improving and I can sleep!! Tomorrow is my first post-op appt and then (drum roll please) I can shower! Oh a blessed day that will be! Now the limitations of no bending, lifting or twisting are still heavily upon me as is wearing my most fashionable back brace for another 2 months and 3 weeks – but hey – with the thought of a new back, I am willing to obey!
More on Kari (as promised above): As you know, 15 months ago we got a diagnosis for her and our son Ryan. At the time there were around 25 others in the world with this diagnosis. Now it is double that. Apparently there are a few others in the USA: Washington DC and Chicago areas. But Kari remains the anomaly with her being the longest living. In second place are four in their twenties, and sadly, most dying in childhood. So of course, research at CHOP is staying in close contact with our family. And today we received info on how we might connect with other families with the same disease (a process that probably won’t begin tonight with limited brain cells after a very draining day).
The info Ron learned today is very exciting to us. We keep getting more pieces of a very large puzzle – a picture we’ve been trying to see for the last 35 years. To see it slowly emerge is energizing to us. We are very aware that it won’t be until heaven that we see it perfectly and with unveiled faces – Jesus in all His glory and how we fit into His story, but for now we are amazed. We laugh and we breathe!!