Welcome

This blog is my record of my journey with my son who had a rare, and eventually fatal metabolic illness. It is the story of the last year and a half of his life, his death, and after. I have shared this journey this in the hopes that is will not only help me come to terms with the realities, but also that someone along the way may find it helpful, as they face a similar journey.







This is my place to comment on events, blow off steam, encourage myself (and maybe you), share frustrations, show my love, grieve my losses, express my hopes, and if I am lucky, maybe figure out some of this crazy place we call life on earth.





The content might sometimes get a little heavy. As an understatement..







WARNING:







People who are grieving may write sad or difficult things and bring you down. This blog may not be for the faint of stomach or of heart. Read with caution and at your own risk.





If you are new to this blog, I suggest reading it from oldest to newest. It isn't necessary, as what I write is complete in itself. But this blog is sort of the result of the "journey" I'm going on, and I think it sort of "flows" better from oldest to newest.



I do hope that in the end you will find, in spite of all the difficult and heartbreaking things, things that are worth contemplating.





Welcome along!





Thursday, July 8, 2010

Prayers

My Dad has done so much better than I had expected. He's still not "out of the woods," as they say, but we have lots of reason now to hope.

I can't believe he hung on so long with his infection and almost non-existent blood counts. I can't believe he continued to do so well for as long as he did as his counts started to come back up. And then, when they did his surgery, it seems almost miraculous how well it went.

Because his platelet counts were still dangerously low for surgery, they prioritized the steps. Then when it looked like my Dad was just bleeding too much, they planned to stop and stitch him up.

First they did the colostomy. They closed off his intestine before the infected part, and brought the healthy end up to an opening in his side. His blood loss was minimal. So then they drained the abscess they had found. Blood loss still minimal. So they went on to removed all of his infected sigmoid colon (put in the technical stuff for all the nurses I know). They got done EVERYTHING they had wanted to do with no great blood loss. Which gives my dad the best chance for recovery.

Thanks everyone for praying. I know that much of this was due to God answering those prayers. I am very grateful.

And I sort have been wanting for some time now to write about prayer, miracles, and Joel.

I had no problem asking people to pray for my Dad's recovery. In fact, though on one hand I have been continually surprised by how my Dad is doing, on the other hand, I felt that God might answer those prayers. So I have freely asked for prayer.

I think it might strike some people as strange, but I have never asked for prayer for Joel to be cured. This is NOT because I don't think God could cure Joel. It's for a different reason.

I try not to waste too much time and energy on prayers when I know God's answer will be "No, not this time, my child." I just think why frustrate myself senselessly with something I know just isn't going to happen. And it seems to me to only be evidence of a sort of immaturity.

For every morning for about 2 months I has the same conversation with Caeden. I'd say " Caeden, what would you like for breakfast?" And he'd say "How about some cookies, Mommy? Can I have some cookies, and some candy?"

You can imagine my answer, I hope. The same answer every day. "No, Caeden. No cookies and no candy. It's not good for you. You need some good food for breakfast." Then the begging and whining and pleading started. "Caeden, you NEVER get cookies for breakfast. It's not going to happen today, or ANY OTHER DAY." Finally: "Caeden, NO cookies for breakfast. Mommy's not going to change her mind. It is like the law of the Medes and Persians, which can not be altered or revoked!" (yes, I really do say this to him, and yes, he vaguely grasps that this really, really means no.)

We had this conversations just about every day for WEEKS. And it's not like I am a Mom who wavers a lot in her decisions or anything like that. It's more to do with Caeden's maturity level. While at times it drove me to exasperation, I never held it against him. It is in the nature of little boys to ask over and over again for cookies for breakfast. It is the job of a mother to keep saying no and never cave in.

I don't think that my prayers begging God for something that He's just not going to do are really exasperating Him. I'm pretty sure He understands every single bit of how hard it is for me with Joel, how much I love Joel, and that I'd do just about anything to help him. So I know He would understand my begging.

Still, when it was so clear to me that Joel would not be healed, it just seemed silly to ask people to pray for it. And sort of a waste of my emotions and time.

Why did I think God wouldn't heal Joel?

I have asked God for a lot of things in my life. Sometimes I really sort of know He's going to say yes. Sometimes I don't have a clue what the answer will be. And sometimes I know something will be a no, and then I don't ask. Really, if you want to see God answer prayer, the best way is to stop asking for things He has to say no to and pray for the things you know He will say yes to.

My husband and I have joked about this for years. Every time God answers a prayer, my husband will joke about how God seems to always answer my prayers with a yes. Then he tells me I better ask God for a million dollars. And then I tell him, again, that in order for God to keep answering my prayers with a yes, I try to ask for things that He can say yes to, and a million dollars is always going to be a no.

I'm going to make this as brief as possible. Joel's diagnosis was devastating. It remains devastating. But from pretty much the start of it all, I saw it pretty clearly. It wasn't what you would call a "vision" in the traditional sense. But I saw down two different paths. On one, Joel was miraculously healed, led a "normal" life. Everything in my life returned to the course that I had always planned. Two or three children, happy family, work, vacations, church, all of it just went back to it's course.

What good would come out of the healing, other than that my life would be easier, with so much less pain, etc? The people who already believe in God would say "Praise God, a MIRACLE!!!" The people who don't would say "It must have been a misdiagnosis. There is an explanation, we just don't know what it is." In the long run, not much would change for either group. Life would just return to the status quo.

And what about other parents of children with this disease? What would they say? How would they feel about my boy being healed, while their precious child worsened and died? Would they frantically try to believe and pray in order to receive healing? Would they be angry that God "played favorites" with me? Would God heal every single child for every single person who would pray and believe?

How could Joel's healing really bring any good? Sure, I'd be happy with my (relatively) pain-free life. But wouldn't other people only feel more pain? Have more hard questions about God? Or try desperately to please God for all the wrong reasons?

Because here is one thing I know about God. He wants our love of HIM. He wants us to trust Him like children trust their parents. He wants our heart full of Him, like a lover's heart is full of their beloved. The Bible says that God IS LOVE. And love is the key in our relationship with Him.

So while it might seem fair to say that those who follow certain "rules" will get healing, it certainly will not foster any love. Jesus looked at the crowd that followed him. Yes, they were all enthused about him. But he knew it was not really HIM. It was because he had fed them with miracle bread and fish.

A lot of people will wed a millionaire. But when a poor man weds, surely he has peace that the emotions declared are real and sincere. I'm not sure the millionaire really believes the part of the vows about "richer or POORER."

God could be the ultimate millionaire. Declare your love, give your vows, and the world is yours!

But God's not looking for a trophy wife. We are not that great as trophies, anyway, as we are so flawed and imperfect. What God is looking for is a sincere heart. One that loves Him for HIM, not for what He can give or do.

And the best way I know for that love to flourish is for it to be left in a less than perfect world.

Honestly, if Steve could just suddenly give me EVERYTHING I wanted, and that is exactly what he did, I am afraid my love would quickly start to change. I would come to expect certain things. And even feel I deserved them. I'm afraid my love would not develop and mature...

The way it has to do now. Because Steve is not perfect. He's a great guy, but sometimes he hurts me. He can't give me all I want. He can't even figure out, most of the time, what it is I want in the first place. He lets me down. And when all these things happen I can let one of two things happen. I can either say "Forget it. I can't love someone like this, " and I can withdraw my emotions. Or I can say "I'm still going to love you. I'm still going to be here tomorrow." And every time I do that, something amazing happens. My love deepens and matures. It grows up into something less about me, and more about Steve.

God is, unlike Steve, perfect. (Sorry sweetie, I can't say you are perfect, but you know I think you are wonderful, and I do love you!) God doesn't test my love with His imperfections, cause He doesn't have any. Instead, God lets my love grow and mature, become more about Him and less about me, by letting life happen. All the pains and trials of life, all the difficulties and tests, they are my choice to do one of two things: I can say "Forget it. What kind of God are you anyway? I got better things to do." Or I can say "I'm going to trust You. Please stay close to me, and help me through this. I want You here for my tomorrows."

These were my choices when Joel was diagnosed. I knew which choice I'd make. I knew that though God would not heal Joel, this incredible pain and sorrow would be part of growing more love for God, more trust. I'll be closer in the end, than I was in the beginning. I do love God, and loving Him, I want to love Him even more.

And I could see no real and lasting good come out of Joel's healing.

(Remember the blog I wrote about all the horrible stuff that would never happen to Joel? Being sick, being developmentally delayed, dying, all that stuff is not fun. But we all will be sick at times, and we all will die, eventually. Being fed, comforted, warm and loved, all that is good stuff. Joel has this. And when Joel dies, I know he'll be with Jesus. So maybe this sounds ego-centric, but I think that Steve and I will suffer more through all this than Joel will. I'm ok with that. I'd rather it were harder on us, than on him. )

Like I said, medical miracles get explained away every day. I couldn't really see how healing Joel would really change anything for anyone, except by making our lives easier.

On the other hand, I could see something else. I could see my heart breaking every day and I could see compassion growing in the cracks. I could see growing friendships with other parents who were also going through one of the hardest ordeals life holds. I could hope that I might be an encouragement, a support, a blessing for them. That would never happen if God healed Joel. And I find it is a privilege to do this. One I'd never willingly have chosen. But a privilege, nonetheless.

And maybe God would make a different miracle. One that would speak much louder than a one time miraculous healing. Maybe the miracle would be less showy, but more lasting. God could continue the miracle of me learning to trust and love him through it all. Maybe if people saw that miracle in my heart, it might speak louder than a physical cure. Maybe it might be a little "advertisement" for people in pain. "Here is a help for you. Here is the One I have found to be my support in this wasteland we call grief. He'll hold your hand, just as He holds mine."

There are a lot of other things I hope grow out of what I can only label as an ordeal of emotional devastation. Maybe one day I'll do some respite work for someone with a sick or disabled child. Maybe we'll foster or adopt a child with special needs. Maybe I will volunteer in Children's Hospital. Because I'm not praying and asking God for healing. I'm praying and asking Him for something I know He'll answer "yes" to. I'm asking Him to use all our pain to help us make things better for other people. I have no doubts at all that this is a prayer He'll answer.

2 comments:

  1. Karen...I wrote this the other day, but just did not get to an actual computer until now to post it. So, here it is:

    Yes...it is easier to "love" someone for the wrong reasons...for what they can give you, than it is to REALLY love for the right ones or when their seems to be no reason at all. Like you said...the first kind of "love" can be phoney and ingenuine...where the second is pure and is viewed by the unfaithful eye as true because the lover has seemingly nothing to gain. The MIRACLE, today, is not in the physical healing...but instead the MIRACLE is the changing of the faithLESS to the faithFULL. The MIRACLE of continuing to believe in a Father who knows best and have faith amongst unmeasurable heartache and pain...when their "seems" to be no reason at all for faith to exist, yet it does. And...I believe that God gave me Graham and you Joel so that we could be His helpers in that MIRACLE. This prayer that I pray (for God to use me and my experience for good) is one I too know God will answer with an enthusiastic "Yes".

    Tracy
    'Angel' Graham's Momma
    http://www.caringbridge.org/visit/grahamwhitney

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  2. I think you are right....your faith and trust in God shines through your posts just as strongly as your love for Joel. Thanks for sharing...my faith grows through you. I don't have a sick child...but I have been at death's door and in some terribly horrific situations and that is where I know I can count on God's grace to get me through. I am reminded of that when I read your posts. I am reminded that even in the good times I should have that same level of passion and trust that this is all part of HIS plan.
    kd

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