The Road Not Chosen

Why me? Because...

I am prompted by this post by Julana at Life In The Slow Lane, which linked to this post by Valerie Wolff, a contributor at Christian Women Online, to share our struggle with the ever popular "why me?" question.

When I was pregnant with Evan, everything went smoothly. I felt great & there were no signs of any problems. I was 30 years old so my doctor did ask if I wanted a genetic screening done. I told her no, mainly because my thinking was that I would not choose to end the pregnancy so why get tested? It never occurred to me that anything would happen.

However, one afternoon as I was sitting on the couch reading "The Motherly Art Of Breastfeeding" I came across the section on nursing babies with special needs. Very clearly I heard a voice say, "What would you do if your baby has Down Syndrome?" I shook my head, thinking "that's odd" & kept reading. Again, the voice repeated the question, "What would you do?" A bit shaken, I thought to myself, "Well, we would adjust." I got up & started cleaning house, trying to put the thought/voice out of my mind.

Fast forward 2 months later. Evan was born. My wonderful doctor, Dr. Luff, sadly broke the news to Harold that Evan had Down's. (He was the first baby she had delivered with Down's.) Stunned, my wonderful husband told the staff not to tell me. My labor had been long, difficult & ended in a C-section because Evan's heart rate had dropped. It was late & Harold decided to tell me himself in the morning. He & Dr. Luff broke the news to me. I was in denial. My baby looked fine to me. I was sure there was a mistake. I would wait for the blood test results.

Later that evening, I lay in my hospital bed in a private room arranged for by my doctor, God bless her! Harold was at home. I didn't know what else to do but pray & sing songs of worship, hoping that would sooth my soul. As I asked God why this had happened, he directed me to John 9:1-3. As he went along, Jesus 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 nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life."

Would I, could I, dare to believe that God would get glory out of what appeared to be a tragic situation? Did that even make sense to me? And what about the friends who had come to my room that day telling me that I couldn't "accept" this diagnosis but had to put my faith to work so that Evan would be healed?

So many questions but even as I lay in that bed, my husband was home praying and listening as God directed him to the exact same portion of scripture. So we did put our faith to work, not for things to be made perfect in our eyes, but for God to show himself through a small baby, just as he had 2000 years before. Now, 18 years later, I can't even count the times when God's work has been displayed in Evan's life because they are so numerous.

Sickness & disease happens because at the beginning of time, Adam & Eve chose their will over God's will and sin entered the world, corrupting everything that had been perfect. Then God sent his son, Jesus, to live here on earth, bringing us the good news that through his death on the cross, we could have eternal life and hope.

Do I believe that God heals? Yes, absolutely, I have seen miracles with my own eyes. Could he heal Evan's body & change his chromosomes? Absolutely. Would I love God or Evan anymore if that were that case? Not at all. My love for God is not based on temporal, earthly situations. I love him because he is the Creator of All, The Beginning and the End, my King and my Lord, my Deliverer and Strong Tower. I love him because he has loved me before the beginning of the world & because "we know that all things work together for good to those who love God, to those who are called according to His purpose" (Rom. 8:28) even in situations we don't understand.

My Spring Break

We have Spring Break this week. We have done so much driving this year due to Evan's medical probs that we decided to stay home & lounge around. It's been a great week so far. We've watched videos (including 8 episodes of "24"), gone to the movies ("Shaggy Dog" for Evan. Funny & enjoyable), ate at a new BBQ place here in town (not very good), & piddled around the house.

I am taking great joy in reading for hours on end. (Well, with breaks for laundry & such). I finished "A Voice In The Wind" by Francine Rivers & need to get "An Echo In The Darkness" (the second book in this trilogy) quickly! Today I am starting "Christ Plays In Ten Thousand Places:A Conversation In Spiritual Theology" by Eugene Peterson.

I am sorting, tossing & shredding several years worth of bills, receipts, etc. We have been married 22 years & have an expandable file for each year containing paycheck stubs, utility records, etc. etc. I have never tossed any of it. We bought a cross-cut shredder from Staples & I am going to town, baby! Feels good to get rid of some of the clutter.

Today I am going to sort through my clothes & take some to either the Salvation Army or to a consignment shop. Harold & Evan will get haircuts & go swimming at the indoor pool at the Aquatic Center. Later on today Harold & I will go get passport photos taken & send off our applications. While we don't have any immediate plans to leave the country, if the opportunity arises at least we will have passports. I am so excited about this! I really want to go somewhere: Kenya, England, Russia, Spain. Who knows what might pop up?

We got 5 inches of snow Sunday night (which is the most we've gotten in 1 storm all winter!) but it has all melted away. Spring is just about here. Time to think about preparing the garden, tilling the soil, & planting new seed. As I look for new things to grow, I am asking God to work in the garden of my heart, pulling out any weeds I may not see, & making room for the fruits of the Spirit to grow unhindered. May He do this for you also. Have a good week!

He Was Smart But...

Thanks to www.heetmeel.com for the image & Brenda Coulter for the idea.

Life Continues No Matter What

Evan's pediatrician called last night. The hematologist wasn't crazy about Evan's latest results. She said she'd be willing to wait another 6 weeks to see if the new thyroid med dosage brings his red cell count down. If it doesn't then she sees no other course but to do a bone marrow draw. So we will wait & pray & trust God, as always.

We are going to a funeral for a wonderful friend of ours, Peggy Palmer, who passed away on Tuesday after being injured in a car accident. Peggy had lived a wonderful life, married to her husband for 50 years. She was one of the tallest women I've ever met, physically & spiritually. I never heard her say a bad word about anyone. She seemed to have a wonderful ability of seeing people as God sees them. Honest about her struggles & own shortcomings, her sense of humor was legendary. It will be a bittersweet time this afternoon but her husband, Jim, is busy reminding us all that Peggy is now seeing Jesus face to face. Thank you, Peggy, for all you have taught me. See you soon.

Not Certainty, But Joy

True God of All Truths, how we desire certainty amid the confusion of our lives. We think we could make it if we just had one thing we could know without doubt, one way to be that was not ambiguous, one other we could unreservedly trust. Yet all such knowledge, being and trust too often reflect our desperation rather than your glory. We pray, therefore, not for certainty but for joy at the discernment that you have discovered us and given us a way to go on in the midst of confusion. For what more could we ask?   AMEN

Humble Us Through The Violence Of Your Love

Gracious God, humble us through the violence of your love so we are able to know and confess our sins. We want our sins to be interesting, but, God forgive us, they are so ordinary: envy, hatred, meanness, pride, self-centeredness, laziness, boredom, lying, lust, stinginess and so on. You have saved us from "and so on" to be a royal people able to witness to the world that the powers that make us such ordinary sinners have been defeated. So capture our attention with the beauty of your life that the ugliness of sin may be seen as just that - ugly. God, how wonderful it is to be captivated by you.  AMEN

Both the above are by Stanley Hauerwas, from his book "Prayers Plainly Spoken" Published by InterVarsity Press, copyright 1999

Stanley Hauerwas is a Professor of Ethics at the Divinity School at Duke University. I was greatly impacted a few years ago by a wonderful book he wrote, "Suffering Presence: Theological Reflections on Medicine, the Mentally Handicapped, and the Church". I was reading this book while I worked at our local hospital in the Admissions department. Whenever I read it in the hospital cafeteria, doctors & med students would notice it & what great conversations that started! I highly recommend it. While it is not by any means "light reading" it is important reading for those of us who live daily lives touched by medicine, the mentally handicapped & the church.

The Results Are In

Or, in the words of Jerry Garcia, what a long, strange trip it's been. (If you don't know who he is, you are less than 35 years old & need to Google him!)

To make the story of a long day short, we left the house at 7:45a.m. to drive 2 hours to wait 2.5 hours past our appointment time to see the surgeon for 5 minutes to talk to a resident for 10 minutes to talk to a nurse for 5 minutes to leave for the 2 hour drive home. Well, we did get a good meal & a trip to Sam's Club in which helped ease the pain of the overly long waiting room ordeal. Sort of. (I did get some yummy Hummus & my favorite granola, Bear Naked. The Fruit & Nut variety is the best!) Our wonderful friend, Sherry spoiled us all, getting us drinks, buying Evan a hilarious frog whose eyes bulge out when you squeeze him, and entertaining us when we were tired & nearly cranky.   

The surgeon wants to do a scope to remove the small piece of bone from Ev's hip. He will look to see if there is any wear & tear on the surrounding tissue and bone. If there isn't & Evan's pain seems eased by the bone piece removal, the surgeon feels we can put off the big surgery for 2 - 5 years. We will have the surgery the beginning of June. It's a one-day deal, a week or so recovery time, and then we can go about our business. Which will be a long over-due vacation to my homeland of So Cal. I think we all deserve a week on the beach after all this mess! (Still haven't heard from the hematologist. Hopefully tomorrow.)

Yesterday's trip was precluded by tornadoes that swirled all over our state and all around our region (one as close as 10 miles away) but nothing touched our little berg. Still, there was little sleep in our house as the torrential rain, lightning, & hail kept Evan up and down all night. Oh, did I mention the stomach flu has hit our town so hard that we had to close school on Friday as only 1 teacher out of the several that we have was healthy? As Harold & I called families to tell them we were closed, almost every one had a sick child. Our local hospital was full by Saturday. Yeash! I'm waiting for the locust & frogs & flies! We better pray!

Overall, I feel a bit relieved. Very tired & fighting the stomach flu myself today, but glad that things seem a bit less dire. Must go now, tired of sitting upright. Thanks to everyone for your prayers. We always appreciated them!

Again?

We got the results of Evan's Saturday blood work back. Unfortunately, nothing has really changed from last month. His thyroid levels are down just a bit, his red cell count is still high, having dropped only very slightly, & his cholesterol levels are still high. Drat! His thyroid meds are being increased. We are now waiting to hear from the hematologist to see if she is willing to wait to see if his red cell levels will drop more with the higher synthroid dosage or if she wants to do a bone marrow draw. All in all, Evan appears healthier, his face is less puffy & he is in better humor. He does still sleep 11 hours a night though. Next Monday is our trek to the orthopedic surgeon to find out what he recommends for Evan's hip. I am more than ready to be done with doctors! But I do thank God for the help they provide. I would just like to not have to see so much of them!

For the last 3 summers, Evan has been involved in a program that helps to teach job skills & also gives kids w. developmental disabilities fun recreational activities. The program ran Monday-Friday, 9AM-3PM, a great help for working parents in a town that has no other care options for our special needs kids. This program has been funded by the State & has survived several budget cuts. We got news yesterday from Evan's wonderful caseworker at the Regional Center that the company that has run the program won't do it anymore for unspecified reasons. Since we are in a rural area, there is no other company to provide this service. Parents will have to find other options for their teenagers during the summer.

It's interesting how God prepares you for things. Last Friday, Harold & I were talking about our options for Evan for the summer. There was a lot to think about. If he has hip surgery, we have to figure out how to juggle our jobs. (I can pretty well work from home most of the time, I think.) If Evan doesn't have surgery, we were trying to already think of another option other than the summer program he has been in. He seemed to not really enjoy it as much last year, & we were sensing it was time for a change. We came up with a tentative plan for Evan to work at the church, dividing his time between janitorial work and helping in the daycare.

(Here comes the part where God provides for a need before we know we have one!) Evan's caseworker told us that while the summer program won't be available, some funding for Evan will be. This means we can hire someone through the Regional Center to spend time with Evan. They can take him to the movies, the Y, swimming, or just hang out at our house so we can do whatever. This will come in especially helpful if he is bedridden after surgery. Hooray!

A wonderful day to all, and may you feel the Lord's provision for you and yours today also.

Money, Honey

Today after school, Evan got to go spend some of his money. We have allowed $30 per month as spending money, since he needs to save for a couple of items. He knew just what he wanted, a new t-shirt. (He has a zillion, but hey, I have a lot of shoes so...) We went to House of Jesus, a little bookstore on the town square. The owners are so sweet & they LOVE Evan, always sending him home with little presents: a demo CD, bookmark, pencils, etc.

Evan walked in like he owned the place & marched downstairs to the clothing section. After a few minutes, he had made his choice. He proudly paid with the money in his pocket & we were off to the grocery store. At the store, he decided to buy a soda. (He wanted to buy a lot of other things there also, but we settled on just that.) The rest of his spending money will be saved for a Youth Group retreat in a couple of weeks.

He is so proud to be paying his own way, even in these small ways. You can see that he feels quite independent as he considers what to purchase & completes the transaction. He is already talking about his dad's birthday next month & planning what present he wants to get. I'm really enjoying watching his progress as Evan learns the practical application of all those lessons on math!

Lion Update: It was warm enough Sunday afternoon (49 degrees) to spray paint them white. We left a little red peaking through their manes so they look like Irish lions! Our very artistic friend, Anna, is coming over tomorrow night to help us scheme. Several people have begged us to tell who will be the next recipients but our lips are sealed!!

In Other News

Yesterday was a momentous day for Evan. He opened his first ever checking account (with us as joint signers). He received his first SSI check on Wednesday, a month sooner than we were expecting it. Oh, the list of things he wanted to run out & buy! Unfortunately, reality had to set in, as it does for all of us.

First, we wrote a tithe check, to thank God for providing for Evan. Next came his rent payment & lunch money for school. He got some spending money and the rest is being saved for a new bed. Welcome to the real adult world, my son!

This morning (yes, Saturday morning) Evan had to go & get blood drawn so the hemotologist can give us the final clearance on the lymphoma issue. This wasn't exactly the best way to start the day, but he did great. Harold said he didn't flinch, just held still. Then it was off to a nice father/son breakfast at the local Ponderosa which has a huge buffet.

It's chilly today but I'm going to try & spray paint the lions (see this post), which must be done outside.  It's almost time to pass them on. Harold & I had way too much fun looking at goofy St. Patrick's Day things at Wal-Mart with which to adorn these creatures. I'll post pics of the final product before we send them to their new home.

Hope everyone is having a good weekend & that your weather is sunny and warm!

10 Signs I Know I'm Aging

1. I get excited when there's a sale on Thermacare Heatwraps.
2. I decide to buy stock in Themacare Heatwraps. Oh, and Aleve.
3. I start using a magnifying glass even though I have my bifocals on.
4. Going out to dinner and a movie seem like just too much to do in one evening. (Seriously, Harold & I decided that last night. We settled on dinner. Oh, and a trip to Wal-Mart.)
5. When I complain about being old enough to have an 18 year old kid, my mom replies, "Yeah, well what do you think it's like being old enough to have a 48 year old kid?"
6. I think "Woo Hoo! That Senior Citizen discount is only 7 years away!"
7. I read the list of Grammy nominees & have absolutely no clue who anyone is except Bono & Sting.
8. The baggers at the grocery store relentlessly call me "Ma'am" much to my horror. I'd like to think I don't look that old.
9. As I listen to the trials & tribulations of the young 20-somethings as they start their journey into adulthood, I think to myself "Thank God that drama is waaaay behind me!"
10. There really isn't much of anything that shocks me or that I haven't heard before. King Solomon was right. There really isn't anything new under the sun. You just have to live a lot of years until you realize the truth of that statement.