Seven years ago, I would never have believed I could write a sentence like that. Seven years ago, I was great with child, eagerly anticipating the arrival of our firstborn. I'd had a fairly uneventful pregnancy and even remember thinking to myself, "This has been so easy that I'm sure it's going to catch up with me later. We're going to have a really rebellious teen or something."
I even had the picture-perfect natural childbirth. My labor started at night and I was able to sleep through the first few hours of it. My water broke at home, and when we arrived at the hospital, I was just an hour from time to push. Our daughter emerged a bit floppy, and needed some extra oxygen at first, but she perked right up and we thought all was well with the world.Then the pediatrician came by to check her out. We actually have this part on video: he used three different stethoscopes, even having me use the call button to ask another nurse to bring in another stethoscope, to listen to her heart. I completely blew him off, however; telling myself that babies are born with heart murmurs all the time. I was pretty cynical about the medical profession at the time and was sure that he just wanted to run my bill up with unnecessary tests.
We took our baby home without getting those test results, but she began losing weight rapidly, wouldn't eat well, and developed a pretty serious case of jaundice. When a nurse came to check on us two days later, she was very concerned and sent us to the doctor that afternoon. They in turn sent us to the local children's hospital emergency room. This really irritated me -- I was not at all thrilled about taking my newborn to an ER with who-knows-how-many unidentified germs floating around. We got lost on the way because we'd never been there, and the baby blues hit me that morning, so I was an emotional mess before we even walked in the door.
I didn't know this at the time, but we spent about 2 minutes in the waiting room before being called back. I should have known that meant we were a high priority case and something big was going on. But I was blissfully ignorant of the process at the time. All I knew is that they kept sticking needles in my baby, trying to get what I thought was an unnecessary IV. I made a solemn vow in my mind to her as I watched a nurse try for the 9th time: "I promise you that when we get out of here, we will live like gypsies and never come back to a doctor or hospital again."
Eventually, they got some blood, sent her for a chest x-ray, did an EKG to look at her heart rhythms, and moved us to a room with better observation from nurses. Again, I had no clue this meant she was really sick. Very quickly, two cardiologists came in and told us they were doing an ultrasound of her heart, called an echo, and we should take the time to get something to eat. The test would take at least an hour, and they'd take good care of our baby.
So we headed to the cafeteria. The nurses were so compassionate to us, and quickly realized I was still recovering from a very recent delivery. They got me all the supplies I needed and helped us find food and drink.
When we returned, they were still trying to figure out where everything went. They had gained access to Elli's veins through her umbillical site, so she was getting fluids and some medicine, and her bilirubin level (indicating how bad her jaundice was) came back high. So the process was already in place to admit her. I remember Scott calling our pastor and telling him that the doctors were still trying to figure stuff out, but things looked pretty serious. It was beginning to dawn on us that we were in uncharted territory and this wasn't a simple case of a heart murmur that would go away.
Finally the doctors finished their test and took us into a private room while the nurses prepped Elli to move upstairs into an ICU. They drew us sketches of a normal heart and then explained how Elli's heart was vastly different. Their initial impression was that she would need a heart transplant because her defects were so many and so complex. They even advised us to get marriage counseling if we needed it because we were in for a long haul and this would be very stressful for us.
We walked with our little girl up to the NICU that night, and left her basking under ultraviolet lights to treat her jaundice, hooked up to one or two IVs to keep her hydrated and give her heart some medicine. I felt very strange driving away with an empty carseat in the back of the car, but they encouraged us to go home and get some rest, as we were in for a long haul.
The next day when we arrived, we were met in the hallway by her doctor and a chaplain. At this point, I did know what this meant, but everything slowed down and my brain just would not dare to think it. We again sat down in a private room, where we heard the words I will never forget:
"Your daughter's heart stopped for thirty minutes. We did CPR but because of her defects, we have no idea how well we circulated blood to her brain. Even if she pulls through this, we will not be able to operate for a few weeks because her body has suffered such a major insult and needs time to recover. The surgery she needs is very major and will be difficult to recover from. I wish I could say, 'but the good news is ___,' but I can't."We learned later that they didn't expect her to survive that day. But she did! And the next day, and the next. We posted Isaiah 40:30-31 on her bed.
She underwent a 12-hour surgery at 3 weeks of age, followed by a 7-week hospital stay. She had another 8-hour surgery at 6 months to complete her heart repair (no transplants fortunately -- she still has her own heart and it's functioning very well now)."Even youths grow weary, and young men stumble and fall; but those who hope in the Lord will renew their strength; they will mount up on wings like eagles; they will run and not grow weary; they will walk and not be faint."
We threw a big party when she turned one, partly to celebrate her birthday, but mostly as a thank-you to the many people who had encouraged, prayed for, and helped the three of us get through that year.(We also had a friend make an anatomically-correct heart cake out of red velvet -- you get warped sense of humor when you live this kind of life!)
Elli enjoyed the red velvet
birthday cake.
That was the beginning of a long journey that has so far included a total of four heart surgeries, countless illnesses including an infection in her blood at 4 months old, and years of therapies.birthday cake.
She will turn seven years old next month, and is enjoying her fourth year since a major surgery. She has many physical challenges because somewhere along the way (no one can tell us exactly when), she suffered a permanent brain injury affecting her motor control. She has a difficult time controlling her muscles, which means she is unable to walk or crawl or even sit on her own. She cannot speak, though she can vocalize and use a computer to express herself. She is on many medicines and needs assistance to do everything. She is also beginning to experience complications from being in a wheelchair and not moving her body as it was designed to move.
This may initially seem like a very depressing story. But we have learned many things about the faithfulness of God, the love He bestows on us through His children, and the value He places in what the world sees as useless or weak or deficient or worthless. Our daughter is a precious gift and has taught us so much.
One of the best things about this experience has been the lessons in what is really important. I run into people constantly who think that something is a problem if it causes them discomfort or forces them to make changes or happens differently than they had planned or requires them to do something because it's best for someone else, not for them.
I've learned that inconveniences and discomfort, changes of plans, and making adjustments to better serve my friends and family, are not problems at all. They are opportunities to show love for others, to accept that God's plan for that particular moment isn't mine and that's better and I must surrender to His will, to do the right thing even if it isn't the easiest thing, and to put my desires and wishes behind the needs and wants of others. This is, after all, what we as Christians are called to do for each other. It's called sacrificial love. It's called preferring others over yourself. It's called walking through the narrow gate, dying to ourselves, being imitators of Christ.
My experience with facing real, life-or-death crises has given me a totally new perspective on the little annoyances of life. More of the time now (I still struggle when things don't go according to my plan, but I confess to a deep-seated desire to be God that He is still rooting out), I can see past the change or the discomfort or the inconvenience to the reality that it isn't that big of a deal in the eternal scheme of things. Will I remember this in a day, or a week, or a month, or a year? Does it affect someone's salvation or their testimony? Is someone going to die, go to the hospital, go without a meal, or have no roof over their head that night? If not, then it's not worth fighting against or getting upset about or yelling or guilt-tripping or criticizing. In fact, those reactions are sin.
Unfortunately, not everyone is blessed with this perspective. Our family seems to be better able to roll with the punches and make mid-course corrections when things change than a significant number of those we come into contact with. The road we've traveled is certainly a unique one. I guess we have just had more practice at this, having had to change more plans because of health problems and make more spur-of-the-moment trips to urgent care and the emergency room than I can count.
I truly do feel blessed for having been assigned this road. I'm not the person I was ten years ago, five years ago, three years ago. Praise God for that! I have lightyears to go yet, but it's encouraging to know that God didn't leave me where I was, and He isn't going to let me languish here either.
Don't get me wrong. I haven't been a bliss-filled, unflappable, accepting person of this experience from day one. I've had many moments of raging at God, shaking my fist at Him, and demanding to know who this could possibly be for my good. The physical, mental, and emotional exhaustion was bone-deep. Still is, sometimes. I went through a long spiritual drought where I believed that while God could answer my prayers and that He was good, He wasn't going to do it for me. I figured if there was a hardest way possible, that's the way He would choose for me.
One night I remember being so discouraged by my inability to get through to -- to communicate with and correct -- my daughter, that I begged Him to take her before I utterly ruined her. But even as I asked it, I know that He wouldn't do that because it was much harder to make me trudge on. Studying through Jerry Bridges' book "Trusting God Even When Life Hurts" with a women's Bible study a couple years ago really helped me find Biblical answers to the pain and struggle I've been through, and know I will face again.
Because, to be painfully, brutally honest, I often feel like I live my life waiting for the other shoe to drop. Because once the first shoe has dropped, you know that it can happen again. And You Never Want To Be Surprised By It Again.
Every time I walk into my daughter's bedroom (whether it's 10pm, 3am, or 7am when it's time to get her up for school), I wonder for a second what I will find. Will she be alive? Will she be covered in blood or vomit? (Which has happened many times.) With every phone call, I have a momentary pang of wonder if bad news waits on the other end. Every time I pass the entrance to the emergency room or hear an ambulance siren, I wonder when that will be me again.
Those things, those types of concerns, seem to me to be Real Problems. And there I think I detect the foul odor of pride in my heart.
For this seems to be where God is hammering me. He is confronting me with my lack of long-suffering towards those who still see minor inconveniences or temporary discomforts as Major Problems. In examining my heart, I see a need for Him to produce in me greater empathy for those who are struggling in this area. I also see Him exposing my prideful heart.
So I ask for your prayers for me. Pray that God would grant me genuine love and patience for my brothers and sisters in Christ, even as I need love and patience from Him and from them. Pray that He would give me such a hatred for my sin that I would fight it and pursue Him with every ounce of my being. Pray that I would cast my cares on God and rest in the confidence that He can and will carry me through whatever lies ahead, whether it's more of the long slow toil of the daily grind or a sudden, unexpected major crisis. And pray that I would humble myself to His directing hand and learn to daily walk in His strength, not my own weakness-mascarading-as-strength.
