Words Within the Music

#226 in The Hymnal 1982, in the Pentecost section.

1.Come, thou Holy Spirit bright; come with thy celestial light;
pour on us thy love divine.
Come protector of the poor; come thou source of blessings sure;
come within our hearts to shine.

2. Thou, of comforters the best, thou, the soul's most welcome guest,
of our peace thou art the sign.
In our labor, be our aid; in our summer, cooling shade.
Every bitter tear refine.

3. Brighter than the noonday sun, fill our lives which Christ has won;
fill our hearts and make them thine.
Where thou are not, we have nought; all our word and deed and thought
twisted from thy true design.

4. Bend the stubborn heart and will; melt the frozen, warm the chill;
rule us by thy judgement's line.
Cleanse us with thy healing power; what is barren bring to flower;
to thy love our sins consign.

5. To the people who adore and confess thee evermore,
thy blest sevenfold gift assign.
Grant us thy salvation, Lord, boundless mercy our reward,
joys which earth and heaven entwine.

Acts 2 (New International Version)
The Holy Spirit Comes at Pentecost
"1When the day of Pentecost came, they were all together in one place. 2Suddenly a sound like the blowing of a violent wind came from heaven and filled the whole house where they were sitting. 3They saw what seemed to be tongues of fire that separated and came to rest on each of them. 4All of them were filled with the Holy Spirit and began to speak in other tongues as the Spirit enabled them. "

Blessings to you,
Jen

Questions, unquestionable love

I'm jealous of trees.

And the sun, and the moon and the flowers. And anything in creation that does exactly as God commanded it from the beginning of time.

I forget exactly what I was reading at the time that made me jealous of these things. But for the first time, I paused and contemplated this fact...

God spoke and the sun, moon, stars and planets came into being. He told them what to do and they obeyed Him. It's their obedience that makes our life possible on this earth.

And think of the trees. Each year, they put forth buds, grow leaves, store energy in the summer to make it through the winter, lose leaves, drop seeds and await the warm breath of spring (again made possible from the sun's obedience).

Sigh...

I wish I had that unquestioning obedience to God's voice. For He, too, called me forth into creation. I know He has a specific purpose for me. But do I go about this purpose with unquestioning obedience? Ummmm...no!

I mean, really, what if the sun or moon or trees starting questioning God's authority?...

God: Sun... it's your job to provide unceasing light to the earth.

Sun: That sounds like a lot of work God. I don't know if I can keep up that kind of pace. Is it all right if I take a little break now and then. You know, like a vacation?

God: Moon...it's your job to reflect the sun's light and to help my people determine when to plant and help the oceans know when to ebb and flow.

Moon (pouting): Why can't I provide my own light sometimes? Why should the sun get all the credit for the light? If I'm helping people and the water, why am I relegated to being a mere reflection?

God: Trees...you shall provide life-giving oxygen to all living things and help keep the air clean. Every year, you shall be subject to the seasons...there will be times of storing energy and producing seeds and growing.

Trees: That sounds like really important work, God! Thank you! However, we think there might be a better way - what if we did all that without depending on the seasons. That way, if the sun decides not to shine and the moon gives up reflecting, we can still get our job done. In fact, maybe we could be the back up if the sun and moon don't work out. Our leaves could be reflectors and I'm sure You can figure out some way for us to produce light.

Sounds kind of silly, huh? But that's exactly what I sound like when I doubt what God has told me or convince myself He doesn't really mean what He says because, of course, there is a better way.

And this led me to thinking, if God made the sun & co. to unquestioningly obey Him, why didn't He make us, make me, this way? Wouldn't it have been easier on Him?

I think I might have found the answer in reading from "The Jesus Storybook Bible." Though geared for children, this Bible, has some powerful insights for adults.

And the answer is love. The more I thought about this, the more it made sense. God created us in large part because He wants a relationship with us - a loving relationship. He could have created us to behave as robotically as the sun & co. where everything runs smoothly, where sin doesn't enter in, where He doesn't have to die for us.

But where is the fun and love and adventure in that?

Think about it...you may love your garden and get great enjoyment out of it's beauty, but can it love you back? You may love the money you make and the creature comforts it provides, but when you have an ache in your soul to be loved for yourself, to be comforted to, to hear tender words of encouragement, can all the stuff in the world provide that.

Parents...What if you had children who always did what you say, when you said it and never, ever, talked back? (Believe me, I know this sounds like a pretty good deal, especially since writing this post has been frequently interrupted by the need for me to repeatedly ask my children to clean up the room...and not hurt one another.) But take a moment to ponder this more deeply...wouldn't life become rather monotonous? What kind of adults would they become? How would you grow to be a better person if your children always did what you said? How would this prepare you for dealing with people and situations that challenge you to become less selfish?

I wonder if part of the joy God gets in loving us is when we turn to Him after struggling to obey Him. Can't you just picture Him cheering and wanting to wrap you in His loving arms when you finally get it? When after a time of questioning Him, doubting Him, rejecting Him, you finally realize that He was right all along and now you'd do anything for Him.

Oh, how I can picture that.

In fact, it's even in Scripture. Remember the parable of the lost son (or of the crazy father, as our Rector, Keith, alternatively titled it)? Maybe Jesus shared this story because it's a reminder that God can take it all and to use it as an encouragement that even in our times of disobedience, God is always there to welcome us back and bask in His lavish love.

Not that I want to turn from obeying Him on purpose. That would be ridiculous. But, it eases the strain of always trying to get it right.

Okay, so maybe I'm not so jealous of trees after all.

Bringing God's Love to the surface: Faith, Parenting, and the Special-Needs Child

This particular post is one I've been trying to compose mentally for several weeks. The combination of the three topics in the title up there is more complex than it might seem at first, which has made constructing this post more challenging than others I've done in the past. It's odd that this should have been so difficult, since those three topics are deeply enmeshed in my everyday life. I have faith in God and Jesus....I am a parent...I have a special-needs child; but I am not an expert on any of these things. As with any blog post, I can only speak to my own experiences, so bear with me. Our blog editor suggested a while ago that I might write about how my faith has affected, or been affected by, my role as a parent to a special-needs child. I have to say right away that I think my faith life has been made richer and simultaneously more simple than it may have been before S.'s arrival.

When S. was born I think I was too much in shock to spend much time railing specifically at God in terms of the "why did you allow this to happen to my child" question. We had had no indication that S. would be other than a healthy newborn, so to be thrown into the NICU routine was a complete and utter shock. It was all we could do to just get through the day and stay sane enough to care for our older daughter K., who was 4 at the time. I do remember that, as ecstatic as I was at S.'arrival, I was also incredibly heartbroken. I was sad for S., I was sad for us, and sad for K. as well - this wasn't the sister we'd prepared her for! When a child is born (or is diagnosed in-utero) with unexpected and permanent medical complications, the child's parents go through a period of grieving; they grieve the dreams they had for that child, they have to let go of many if not all of the expectations and assumptions they had nurtured as to how their child's future would play out. It is a very difficult process, and it can take a while to work through. I still have moments of sadness when I consider what S. would/could be doing now as a 5-year-old if Prader-Willi Syndrome weren't part of her life.

Being the parent of a special-needs child is a complex thing. It can simplify how you feel about humans in general. It can also, once you get past the "boy do I have some questions to ask God" thing, concentrate your faith down a few key points - which is good, as you won't have time for much more. As I was preparing to write this post I did some searching on the Strong's Concordance site, looking Bible verses dealing with illness (the closest I could get to "genetic syndrome"). Well, after skipping around from one thing to another I came across this verse, Psalm 139:13:
"For you created my inmost being; you knit me together in my mother's womb."
also this, Exodus 4:11:
"The Lord said to him, 'Who gave man his mouth? Who makes him deaf or mute? Who gives him sight or makes him blind? Is it not I, the Lord?' "
and lastly this, John 9:1-3:
"As he went along, he saw a man blind from birth. His disciples asked him, 'Rabbi, who sinned, this man or his parents, that he was born blind?' 'Neither this man or his parents sinned,' said Jesus, 'but this happened so that the work of God might be displayed in his life.' "

What these passages helped boil down, for me, is my belief that God is not using S.'s PWS diagnosis to punish anyone; He would never do that, and I have never felt that way. Instead I believe that even though the genetic "blip" that caused PWS for S. happened completely at random - meaning nothing we (B. or myself) did "caused" PWS in S.'s body - in God's mind it was not random at all. S. is who she is, she is exactly as God intended her to be. PWS is as much an integral part of her human-ness as her eyes or her laugh or the toenail on her big left toe. God put her together before she was even born....He knew way ahead of time that S. would be born in our kitchen with the help of EMTs (I would have appreciated a head's up on that one!)....He knew she would spend time in the NICU....He knew it all. He's in control of the situation. The verse from John, quoted above, is one I find both intriguing and comforting when I consider our lives with S.; " 'this happened so that the work of God might be displayed in his life' ". Wow. What will this mean in terms of how S.'s diagnosis will change everyone around her? It has definitely changed me over the past 5 years. In many respects I can only hope I am a different, better person than I was pre-2004! Living with a sister who has a genetic syndrome will most definitely affect K., hopefully in ways more positive than otherwise (this is challenging on some days). This verse also tells me that God means only good things to come from this. Obviously this is tough to believe at times...but I think the fact that I wouldn't change who S. is testifies to the fact that God has already used PWS to change us for the better!

This in no way means that I am able to just smile at S.'s frustrations and difficulties, thinking "oh, it's okay, that's God's will at work!" No, it breaks my heart almost daily to see her struggle with something, or tell me her stomach hurts when it's just her body tricking her, or see her want to do something physically strenuous and she's not yet able to. But, when I finally have a few seconds to reflect on my family's big picture, I am able to take a breath and remind myself that someday, God will explain all this to me. Someday, when my soul goes home, there will be a moment of perfect clarity where I can finally say "oh, so that's why.....", and I will be able to finally know that my sweet daughter's daily struggles didn't prevent from being happy, and instead served to bring God's love to the surface in the rest of us. Would I still be a puddle of joy if God would remove this burden from her and allow her to live a "normal" life? Of course I would. In the meantime, however, I pray for grace, and patience, so that I can remain strong for S. and be the parent and advocate for her that God is asking me to be.

And if I could ask anything of our blog audience it would be this: please pray for all parents of special-needs children out there. It is a very often a tough, exhausting, frustrating job and many parents do it by themselves, with little support. Parenting in general is challenging enough; parenting the special-needs-child takes "challenging" to a whole new level.

Thanks for reading, have a great night-

Jen