Blog #14: Divine Intervention

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While we were at the NIH (National Institute of Health) a few months ago, we had one day that we were able to sneak off campus and spend the afternoon in DC.  We took the subway to the nearest exit to the National Mall and walked through a few museums, and per Emilia's request, we played in the grass for a good hour or so.  As we walked aimlessly as it got dark, as I previously noted, we literally ran into the presidential motorcade.  We stood around at least 30 minutes as the crowds of people that were not permitted to cross the street while the motorcade was en route grew bigger.  After a while, I noticed a man staring rather intently at Emilia.  Granted this happens often.  Dave says the guy's name was Ken, I can't quite remember but lets call him Ken.  He was dressed in a very nice suit.  I kept looking at him and then at Dave to see if Dave was going to say something.  Sometimes when this (prolonged staring) happens, Dave is much braver than I and acknowledges the person and asks he/she how they are doing.  After a while, Dave looked at Ken and asked him how he was doing.

Ken was startled and you could tell a little embarrassed...he had honestly been looking at Emilia with a very perplexing face for at least a few minutes.  He fumbled his words for a few minutes and said something about his granddaughter being about the same age, this conversation going on while we were walking among the crowded street.  At one point, he just stopped and grabbed one of our arms and said the following (I'm paraphrasing the discussion from memory), "There is something about your daughter."  To which Dave replied, "Yeah, we know."  Ken: "No, there is something very special about her."  Dave:  "Yeah, we know."  Ken: "No, I mean something really special about her, I can  just tell.  I don't know what it is but she is going to do something amazing."  Dave:  "No, we get it, we know she is very special."  Ken:  "Can I pray over your daughter?"  Dave:  "Right here?"  Ken:  "Yes, right here, right now."  Dave:  "Of course."

So, in the midst of one of the busiest sidewalks this man proceeds to pray over Emilia for at least 5 minutes right in the middle of the sidewalk (for the record, 5 minutes is an eternity on a busy street in DC).  Emilia was such a pro about it, just sat there in the stroller listening intently.  I think that was the case because she really is such a pro at being prayed over.  This experience actually reminded me how we found out so early that Emilia has pulmonary hypertension, and I mentioned previously that I would tell that story..so here goes.

Some of the first people we told that Emilia was having lung problems in utero that could be very problematic were some very good friends of ours, the Welps.  We told them for the same reason I think people instinctively start doing the sign of  the cross in traumatic situations...we knew we needed a miracle.  We knew they and their small children would pray incessantly.  A few weeks after notifying them, Christian Welp suggested he wanted to arrange a "prayer meeting".  He had planned to invite a group of people who he knew to be charismatic prayer warriors.  This was something new to both of us and maybe even a bit out of our comfort zone, but we knew Christian knew what he was doing.  These people were amazing..so considerate, so prayerful, so hopeful and determined to have a profound impact.  And, it worked!  Each time we went back for an ultrasound to see if the fluid in the pleural of her lungs had waned and each time it was getting better.  Given the statistics going against this happening, it truly was a miracle.

 When Emilia was about 15 months old, Christian decided it was time for another prayer meeting.  She had started having these week-long episodes of throw-up and diarrhea and each time it was getting more and more difficult to keep her hydrated.  This "meeting" had a number of the same warriors but also included the priest from our parish (Father Charlie), a good friend who was actually the priest at our wedding.  That morning, Emilia started one of her episodes but this was worse than anything we had seen before.  Everything we put through her g-tube was coming back up, she kept nothing done.  Strangely, she was in good spirits and as long as you didn't feed her she was a happy little girl.  Again, the prayer meeting was amazing.  Emilia slept the best she had ever slept that night.  I recall that she didn't even wake up until after 10am the next day...which was unheard of, and to be honest with you, a little unsettling.  We thought for certain this meant that she would have a good day and hold down her food.

Boy were we wrong.  She had a horrible day, throwing up everything we put in.  We considered the emergency room but she was so happy and in good spirits that we decided to wait it out.  It lasted another day or so when I finally looked over at her sitting up and realized she was struggling to hold herself up...it was time for the emergency room.  While we waited in the emergency center for a room upstairs, I started inquiring about who our presiding physician would be.  I was REALLY hoping it would be the same one we had a year prior.  He was so considerate and thoughtful (for instance he stayed a good 2 hours after his shift the evening we were admitted to make sure everything went okay).  Obviously, all of the people told me the chances were slim because there are a lot of physicians.  You can imagine my surprise, joy, etc the next day during morning rounds when I looked out our room and saw this doctor.  I nearly tackled him, inquiring whether he would be taking care of Emilia.  He was definitely confused about my enthusiasm because he didn't remember us, but I trusted this man to listen to us.  We spent a few days to treat her dehydration but before he discharged us he stated the following, "I just feel so bad that you still don't have any solid answers after the last year, what else can I do, is there any test that hasn't been done?  I stated that we had not done an echo.  A doctor back in Cleveland recommended we see a cardiologist but we just hadn't gotten around to it.  I told him I didn't think she had any symptoms to justify it, but I would love to just know all is okay with her heart.  He said, "consider it done, I will order it now and you can leave once you have the results."

I think both, we and he, were surprised what they found.  She had pulmonary hypertension, which is something you generally find because people are symptomatic and quite progressed in the disease.  Finding this out as early as we did has given us the ability to seek out the right care and treatment, treatments that we are hoping have a preventative nature to them.  I thought about why we had such a horrible week coming out of that prayer meeting and I really started to rationalize this by saying to myself that this pulmonary hypertension must be an important data point, we must need to know this before it became obvious for a reason.  Now here we are nearly 2 years later and it is definitely what we consider the most pressing issue  and I think the second most important data point we  have (second only to her genetic error).  The doctors in New York confirmed that she may require gene therapy on her lungs someday, which has solidified for us our need to support advancement in this technology because the ability to do what she would need doesn't actually exist yet...wow.  There are times I get distracted by other issues she is having, but I am reminded of what data came out of that prayer meeting and each time I put my focus back on her heart and lungs.  We are so thankful for people's willingness to pray over our child, both perfect strangers and dear, dear friends.