Radical Acceptance

So many people have made comments to me about how strong I am for the way I am dealing with Nathaniel’s illnesses (his hemophilia and lung problems). They’ve said the same things to Lesley. The difference is, though, that she really is strong. Me? Well…
I’m just too weak to fight with it.

Nathaniel is very sick. Even as I type this, he’s back in the hospital due to his heavy congestion. Maybe he’s not quite over the cold that sent him to the hospital last week. When we catch a cold, our lungs produce mucus that we expel to push the virus causing the cold out of our bodies. Nathaniel’s lungs, for whatever reason, are not expelling that mucus. The mucus builds up and builds up and builds up and slowly causes his lungs not to work in keeping his blood oxygen saturation at a healthy level. Dealing with this is not strength.

I’ve stuck Nathaniel on 2 different occasions, and plan on doing so again soon. I mean that I’ve put the needle into the subcutaneous port in order to infuse the blood clotting factor. I did the whole process from wiping the counter down with Clorox disinfecting wipes to make the area sterile to putting on the band aid to throwing everything away when we’re done. This is not strength, either.

I’ve had to explain to Jacob and Caitlin on many different occasions why they cannot jump on the bed or on the floor or on the couch next to him. If they were to trip and fall on him, it could cause an internal bleed that could kill him. Not strength.

What is it then?

I think I call it acceptance. This is what we do now. We take Nathaniel to the hospital when he can’t breathe. That’s just what we do. We give him his blood clotting factor. It’s a shot 3 times a week. We balance keeping him safe from his very active brother and sister with trying to make sure they know that they can touch him, love on him, and have fun with him. That’s our daily lives.

It doesn’t take strength, unless it’s the strength of acceptance. But really, accepting reality doesn’t take a heck of a lot of strength either. I’ve always found fighting reality is a lot harder than accepting it. This is kind of my approach to exercise really. I know the dumbbell’s heavy. I can accept that and move on. I don’t need to lift it to know it’s going to be hard to lift. Lifting it takes strength. I’m a very weak, out of shape person, but I accept that.

I know that it’s going to be hard to cope with Nathaniel’s illnesses. Fighting with illness takes more strength than accepting that it’s going to be hard. So often we compound our own difficulties by thinking that life should not be difficult, or wondering why this is happening to me, or grumbling about the fact that life is unfair.

Life is hard enough without making it worse by feeling bad about the fact that it’s hard. Getting angry about the fact that life is hard won’t really help the situation, either. The first of the four noble truths of Buddhism is that life is suffering. Once we accept that, life gets a little easier; because we stop fighting so much when suffering comes. Actually, it’s one of the first things Christians know about being a fallen human in a fallen world. God told Eve, in pain she would bring forth children. And to Adam, the Lord said, “By the sweat of your brow shall you get bread to eat.” Life isn’t paradise in the garden anymore. We and the world are fallen from that perfect state of creation, so we suffer.

The real trick is to accept suffering. It’s an incontrovertible consequence of our fallen state. We suffer because of original sin. What makes so much conflict in our lives is that we don’t want to accept suffering. That doesn’t mean that if I get sick I should just lay down and die. When I get a headache, I take Advil. I also know that until the Advil really kicks in, my head is going to hurt. Getting upset about that and irritable with those around me is not going to make my head hurt any less.

If I were to get cancer, I would get treatment. I would also accept the fact that I’m probably going to feel like crap from the cancer and the treatment. That’s part of the process. I would also, if it were to come to that eventually, accept the fact that all treatment has been done and there is nothing left to do. I would accept the inevitability of my own death, and make preparations. Getting mad about it; getting sad about it; being a jerk about it is not going to help the situation.

Nathaniel has hemophilia. We accept that. That doesn’t mean we let it go and hope for the best. We provide him the necessary assistance to manage it so that it will be as unobtrusive to his life as possible. We accept that, too. Nathaniel’s lungs are weak. He cannot expel the mucus that builds up in them if he catches a cold. What can I do about that? Getting mad doesn’t change the reality that this dumbbell is heavy to lift. I accept it. Jacob has to wear a patch over his eye for at least 8 weeks. I hope to teach him to accept reality as it is. We do what we have to do to manage reality. Getting mad, embarrassed, shy, sad, or upset is not going to change the fact that this is what we have to do.

In a lot of ways, Nike had it right.

Just do it.

In the end, it brings me back to Job. After losing his children, his livestock, his servants, and everything he had, the Lord then allowed Satan to strike him with an illness causing severe boils. His wife told him that he should just “Curse God and die!” (Man, I’ve wanted to say that to a few people in my time.)

“But he said to her, ‘You speak as foolish women do. We accept good things from God; should we not accept evil?’ Through all this, Job did not sin in what he said.” Job 2:10.

Ultimately, it is not strength that helps me bear up under trials. It is acceptance.

Perfect Love Drives Out Fear

I’ve been thinking of 1 John 4:18 a lot lately. A lot of people are familiar with part of this verse, “Perfect love drives out fear.” That’s not the entire verse, though.

“There is no fear in love, but perfect love drives out fear because fear has to do with punishment, and so one who fears is not yet perfect in love.”

Too often, when things happen like what has happened with my family and Nathaniel, it gets interpreted as a punishment. It was a question that I know has crossed both Lesley’s and my mind, “What did we do to deserve this?” The question, “Why is God doing this to us?” is much like it, often asked out of a sense that God is heaping troubles on us because we did something, even unknowingly, to deserve it. Even the question, "Why would God let this happen?" suggests the idea that God, although passively, has something to do with the cause of our suffering. Many people have that image of God as the punisher, wreaking vengeance for everything in our lives we’ve done that’s wrong.

If we believe that God’s love is perfect, this is unacceptable. In an earlier post, I discuss the biblical Truth that all suffering is a result of original sin. Nathaniel’s hemophilia and lung problems are due to the fact that we are separated from God while we live in this world. They are not punishments from God.

I have no need to fear, because I am doing the best I can to remain in right relationship with the God who loves me. Is my love perfect, as 1 John 4:18 requires? No, but God’s love is. I’ve moved past the being angry at God phase of all that's happened over the last six months. I’d be lying if I said I haven’t been angry with Him. In faith, though, I know that He is the source of everything good that has kept Nathaniel alive. How can I be angry with a God who has been so active, even before Nathaniel was born, in giving us what we’ve needed to enjoy him in our lives?

It wasn't easy moving beyond the anger I felt for what God allowed to happen to my little boy. It took a great deal of faith and reflection. God's permissive will allows suffering, because for him to remove suffering would be for him to rescind his gift of free will. God passively allows suffering, because it is the result of original sin, the consequence of humanity's choice as a whole to separate ourselves from Him. God actively works to be there with us through our suffering, though, so that we can lean on Him for wisdom, awe, reverence, strength, understanding courage and knowledge. (Get that, the gifts of the Holy Spirit). God joins us in our suffering so that we can experience "the peace that surpasses understanding" (Phillipians 4:7).

God has not left us in our pain. God joins us in our suffering. That's the meaning of the cross of Jesus Christ.

Hemophilia is not a punishment. Nathaniel, certainly, is not.

One of the most important things I know as a parent is that my children’s self-concept is formed by my belief in them. If I think of my children as cursed, as their hardships as punishments, their needs as awkward, their quirks as weird, however you want to put it, that’s what they are going to think of themselves. Children do not know what to think about themselves. Whether it’s something as simple as Jacob needing to wear a “pirate patch” because he has anisometropia and anisometropic amblyopia (the doctors' fancy way of saying his left eye sees better than his right eye), or something as complex as managing Nathaniel’s hemophilia, they will form their thoughts about it according to the way Lesley and I think about it.

If we make out that it’s weird and awkward that Jacob has to wear a patch for a few weeks to correct his vision, he’s going to believe that HE IS weird and awkward. I prefer to think of it as kind of cool. He’s got a doctor’s order to be a pirate for the next 2 months. If truth be told, I'm a little bit jealous.

If we think of ourselves or Nathaniel as being punished by God because Nathaniel has hemophilia, even if I never say a word about it to him, he’s going to develop a sense that HE IS a punishment to us, a curse to us. I prefer to think of him as a gift. That’s what he really is.

God gave him to us, and… “If you then, who are wicked, know how to give good gifts to your children, how much more will your heavenly Father give good things to those who ask him” (Matthew 7:11). Nathaniel is our “gift from God.”

And so are Jacob and Caitlin.

Perfect love casts out fear, because I don’t need to be afraid of being punished. I don’t love my God perfectly, but I believe in His perfect love. And I believe in His desire to help my love for Him to grow. After all, “God is love” (1 John 4:8). So while I cannot trust that a gene on an X chromosome won't mutate to cause a life long, difficult to manage illness in an infant, I can trust that God will be there next to me and Lesley and, more importantly, next to Nathaniel, for as long as he has to manage it. I can't trust that Nathaniel's lungs will ever be healed, but I can trust that God's breath of life will lift him up for eternity.