Defining Boundaries

Last week, we made a post about how fragile Eli's health is. We noted concerns about coming across bluntly. Today, we were reminded that while you all say "Oh, I understand," the reality is that you don't. Please stop telling us you do. Please let me explain how grim the situation is, and please do your best to understand it. Eli's outward appearance is no indicator of his health. He looks great, yet he's always one step away from the ICU. We can no longer afford to have any concern for peoples' feelings being hurt by our strict measures.

If you think you might be sick, stay away.

If you have "just a tickle" in your throat, you are a lethal threat to Eli. Stay away.

If it's "Just a little nothing," stay away.

If you passed a friend in the grocery store who has a slight cough, stay away.

If you've been around someone who's been sick, you're a carrier. Stay away.

If you've been around someone who's been around someone else who was sick... stay away.

This week, we had to ask Eli's physical therapist not to come in the house because she thought she may have been around a sick kid last week. She said she felt fine, but also admitted that doesn't mean she may not still be contaminated. She now doesn't enter the house without rubber gloves and a surgical mask over her mouth.

This is a serious message, and we need you to understand and respect it. We are entering into flu season. The flu will kill Eli. Today was Eli's last church trip for a very long time, and we only did it because it was outside in the park. Paige cannot be a part of AWANA. Paige cannot take part in play dates with friends. Paige cannot go to preschool. We can't sign Paige up for gymnastics, no matter how much we'd like to. We were forced to miss a birthday party for a dear friend yesterday, because we just can't take any risks. We have been forced to isolate even our very selves, so that we don't become carriers. When Paige got sick, we didn't see her for a week, as she couldn't be home. One evening, I put serious consideration into getting hotel room here in town, because I was concerned about being a carrier, as well. My mom flew into town from the Seattle area over a week ago, but hasn't seen Eli yet, for fear of contamination. We demand this level of care and concern.

Every day when we come home from work, our first step is to use the hand sanitizer at the front door. Then, proceed DIRECTLY to the shower without touching anything, shower with antibacterial soap, then change into new clean clothes. We have a HEPA filter running 24/7.

We are now in lock down. We will be shut-ins through the fall and winter. I will say it once again, Eli is always one step away from the ICU. He will be seen only when necessary. We CANNOT have another close call like we did a couple weeks ago. His mortality cannot afford it.

We pray the severity of the situation translates well. Yes, it is intended to scare you. That's the same edge we live on every day. Eli's cardiologist has all but verbally admitted he doesn't expect Eli to make it through this season, but he's hinted at it very strongly.

Please pray we make it through this winter.

Little Sister Sarah: Goodbye & Thank You

A week ago, my little sister passed away in her sleep. Sarah was 30 years old. The last week has obviously come with much reflection.

Growing up, Sarah and I had our typical brother/sister quarrels. That's what kids do. But we also had lots of fun together. When we were probably aged 6 and 3, we used to play a game called "truck." She'd sit on the couch with her legs straight out, and I'd grab her feet and pull as hard as I could to get her off the couch. She’d land straight down on her rear, and I’d proven my strength. She was never able to pull me off the couch. I remember her betting me I couldn’t hit her finger with my drumstick. I quickly won that bet, and we never did that again. I remember our parents having to put a piece of tape in the center of the backseat of the car to mark a barrier neither sibling could cross, as we traveled cross-country for 2 weeks. To this day, I still say she crossed to my side on occasion.

We both grew up musicians, thankful years later for the piano lessons forced upon us both. She was always a better pianist than I. She went on to play violin, flute and saxophone, but her real love eventually became the bass guitar. I remember sitting in as drummer for her band, as she and friends rehearsed a live rendition of “Spider Webs” by No Doubt for the high school talent show. I still remember countless hours of listening to her playing her bass in her room to all of her favorite heavy metal bands. She had a particular (and understandable, I might add) love for Metallica. We both “cut our teeth,” so to speak, on Metallica’s music. We even played together, at times.

We both saw our first live concerts together. Van Halen and Def Leppard, two different shows. We also saw Collective Soul and a few other shows together. We were both equally floored to learn we were related to “Head,” the guitarist for Korn. Meeting him at his parents’ house was like meeting a childhood hero for her. She’d later go on to see Korn several more times, once getting VIP passes that she bragged about for weeks.

When Tanya and I married, Sarah was so excited to have a sister. She loved Tanya as though she’d been a sister since birth. It wasn’t until this week that I would recognize this as probably her greatest strength, accepting others. More on that, later.

When Sarah became a part of the professional world, she shined yet again. In her short time as a writer for the Reedley Exponent newspaper, she showed her award-winning writing skills to be as abundant as her musical ability. She was very proud of this, having saved several of her pieces as personal keepsakes.

In more recent years, our siblinghood matured into a spiritual relationship. Sarah began to see the new peace, joy and life I had through faith in Jesus. I will always distinctly remember her asking me “If God chooses who to make happy, why hasn’t he chosen me to be happy like you and Tanya?” That was a tough question, but became the opening of the door to her very own salvation, which came a little later. We were so excited to give Sarah her own Bible for Christmas in 2004. Only a few years later did the evidence of those planted seeds maturing come into view. In the last couple of years, Sarah was more outspoken about her faith, and specifically in a Savior Jesus. When she moved back to our area, she began attending church regularly with us. Paige enjoyed being able to wake Sarah every Sunday morning by jumping on top of her, putting her face 6 inches in front of Sarah’s, and asking very loudly, “Auntie Sarah! Are you awake?!” The answer was almost always “Well, I am now,” with a big smile.

Auntie Sarah was very vocal about her love for Paige and Eli. Eli played a huge part in Sarah overcoming her anxiety. While he was still in the hospital, Sarah built up the mental toughness to break so many barriers that had recently burdened her. 1. She drove on the freeway. 2. She did it at night. 3. She allowed herself to be a passenger in a car. 4. She rode in an elevator to an upper level in the hospital. She often shared the story about when Paige asked “Daddy, why are we going so slow?” because I actually maintained the speed limit, bringing Sarah up to the hospital to see Eli. Sarah immediately burst into laughter at the well-received distraction, as she tried with all her might to hold back tears of anxiety. The corridor to Eli’s section of the hospital was very long, and was solid windows on one side. As Sarah ran her hand along the wall on the opposite side of the corridor, she asked “Why do these corridors have to be so long?”

I will always remember her saying with such strong conviction “I will NOT allow my anxiety to keep me away from my precious nephew. I’m GOING to see him.”

This became an obvious turning point in Sarah’s life. Only weeks later would she quit her Bakersfield job, and move back up to Fresno, to see family she hadn’t seen in 4 years. Her newly found joy in her victory from Bakersfield and all that time in her life represented was apparent to all. She moved in with our aunt and uncle, her bedroom on the second floor. Only days before she passed, she leaned over the loft railing, declaring to our aunt, “Look! It doesn’t bother me any more!.” She would share in social networking circles “I’d forgotten what joy felt like. I’m happier now than I’ve ever been.” Sarah was in a better place mentally and emotionally than she’d ever been in her life.

I’ll always remember having lunch with her only a few weeks ago, while she was still in Bakersfield. She told me “You know, I’m 30 years old, and I’m tired of living like this. I’m an adult now. It’s time for me to start moving forward. I don’t want to be this person any more. I want to be with family. I want to be with Eli and Paige.” She spoke of plans including going back to school to get her nursing degree.

Just as everything started looking up… she was gone.

Reading her friends share their own stories about Sarah, I’ve begun to have my own realizations. I’m disappointed that it took her death and seeing through other people’s eyes for me to examine Sarah’s life closely enough to recognize its real worth. If I were to single out just one piece of Sarah that I will always remember, it will be her acceptance and love. Sarah accepted anyone, just as they were. She was genuine, empathetic, loving and completely accepting. She would take people into her heart whose values completely differed from her own, and she would love them.

I have found myself wondering what sort of woman she would have been at 40, or 50, or 60 years old. I think she might have been a little eccentric, certainly joyful, and still armed with a wit as sharp as a tack. While I certainly miss her deeply, I take great comfort in knowing she knew Jesus before she died, and is already spending the rest of eternity with Him. I am also so greatly appreciative of what she has taught me, a true love for anyone, no matter their story. I am a better person because of her. All of us are.

Return to Morro Bay and Clean Air

We had the opportunity for another long weekend in Morro Bay last weekend. While, surprisingly, not a very relaxing weekend for us, there were some high points and new discoveries with Eli's health.

We took the kids to the Santa Barbara Zoo and met up with my aunt Dani and cousin Bennett. Bennett is a genius 8-year-old who served as a great tour guide. Paige latched onto Dani, and they walked hand-in-hand all day. This was Eli's first trip to any zoo. It's just been too hot this summer to take him to Fresno's Chaffee Zoo, yet. Paige wanted to make sure we saw the "elphlants" first.

We also got to spend the weekend with our closest friends Randy and Laurie, who were in as desperate need of a getaway as we were. When we told Paige they were coming, she said "Oh! I'm not shy to Randy and Laurie and Randy's a punk kid." We don't know where the latter started, but it's been a fun joke for Paige for quite some time. Randy did a great job teaching Paige how to build sand castles on the beach. We all shared some of the best laughter any of us has had in a VERY LONG time. Tears rolling down your cheeks kind of laughter.

Eli responded very well to the clean air, more than ever before. For three days, he only required oxygen while sleeping. Even that was at a lower level than ever. Our last day out, we even worked up the courage to remove his canula altogether, and he traveled through Morro Bay, up and down Embarcadero Blvd and to the beach with a completely naked face all day. We've now been home two full days, and are still able to go without oxygen while he's awake. We don't know if this is a good sign, or any indication of his health, but it's certainly helping us see him as a real boy, not a medical patient. He's also getting much bigger very quickly. He's well past 13lbs, now.

We talked to Dr. Fields about the clean air and oxygen support. Could clean air alone make such a difference? We know we live in some of the dirtiest air in the nation, but could it make that much of a difference? Could this revelation open any doors to further understanding of his condition? Dr. Fields was also intrigued, and we're going to experiment in the area of allergies. We'd like to see if perhaps all the junk in the air is irritating Eli's lungs more than most, causing them to tense up. Could this also effect his pulmonary hypertension? Most certainly so, yes. We are starting Eli on a daily dose of Claritin, of all things, and we'll see what happens. The only real way to know if it's going to make a difference is to simply try it, and note his progress.

As I type this at home, I'm looking over to his monitor. He's off of air, and all his numbers are exactly where we'd like them to be. We pray we may have just discovered another piece of the puzzle.

A note about Facebook

Here's just a quick note to those of you who don't have the problem addiction with Facebook like we do. Tanya and I spend a lot of time on Facebook, and many of the minor updates or quick niceties only get posted there because we forget to share them here, as well. We've decided to make an active effort to change that, so please be patient as we make the transition to dual posting. And to those of you also on Facebook, you should get used to reading everything twice.

Witnessing a Miracle

We had quite the scare 2 nights ago. Eli's condition continued to worsen. His breathing looked like a severe asthma attack, gasping and choking for each breath, then coughing with each exhalation. Excruciating to watch, we called our pediatrician to verify taking Eli to the ER was the proper choice. He agreed. We expected a trip back into the ICU and intubation to control breathing. We began to pack some clothes, knowing we were staying the night.

Out of shear desperation, we decided it was time to pray. Literally fall to our hands and knees over Eli, and beg God to spare his life. As we prayed, Eli stopped wheezing, and started singing! When we opened our eyes, he was looking right at us with a huge smile, and breathing smoothly. We had to turn down his oxygen feed, because he was bumping off the high end of where we want his blood oxygen saturation to be! In a matter of seconds was a complete turnaround in his health.

We never left the house that night. As I began to process the experience, I became a little frustrated with myself. I wrote that night:

I wish my own maturity and discipline didn't require such drastic measures. For a second time, I recognize the need to be bold and vocal with my faith. This isn't comfortable for me. Praise be to Jesus, who has given me everything I have, and taken away what I don't need.

Very shortly after all this had happened, I got a phone call from Pastor Jim. He informed me there was a business meeting at the church that night, and at the exact minute we were praying, the 50+ members at the meeting decided to pray for Eli, as well! I was beginning to see the evidence of God's direct intervention that night. It took friends' realizations for me to completely open my eyes to the fact that we had just witnessed a real-life, Biblical-style, body healing miracle.

I later shared a realization with one of those friends, "I can't believe how blind we are to God's work. We read stories of miraculous instantaneous healing in the Bible, and wonder why God doesn't work that way any more." In our hearts, we know he does, but living strictly by faith can be so challenging at time. That night, we experienced it for ourselves, firsthand. Not someone else's inspiring, slightly unbelievable story, but our own.

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Fast forward back to today. Eli's in much better condition, now. He's still a little mucky down in there, and occasional coughs are productive. He's still getting loaded up with medicines pretty heavily. He gets nasal spray on occasion to relieve sinus pressure, and saline drops and suction to help remove the snot. We're using a nebulizer to give him budesonide (a steroid to help dry out the fluids) and Xopenex (a bronchial dilator), but have pulled back on the Xopenex, lately. All these drugs sure dry him out. We get a kick out of the video below, because you can see the effects of his dry mouth, he sucks on his lips. It makes us laugh.

Paige is staying with friends one more night. She'll come home tomorrow. It looks like she's over her cold, and her voice is coming back. We've missed her desperately, but are SO THANKFUL for those who have risked (and given up) their own health in order to protect Eli. Home life will be a little different for us now. Antibecterial soaps, wipes and sanitizing gel are now standard procedure. At work, I isolate myself from people as much as possible. I don't let anyone ride in my vehicle any more. We're hearing about so many friends who are getting sick, all over the nation. 'Tis the season, I guess. We've decided to hunker down, become shut-ins, and try to make it through this fall and winter as unscathed as possible. We'll write more on that, at another time.

For now, praise our Lord, Savior, Healer and Provider Jesus for giving us such a bold miracle in such simple terms that even we could see it. Here's Eli, tonight: