Spring

I love Spring. Blessed beautiful days outside. Gardening, exercising, chasing kids...

Tomorrow, Beaner, Goober (Rockstar's lil sis) and I are going here with our GEMS group.

In other news, I have stepped up to become our new GEMS Club Coordinator. A (volunteer) job rivaling that of youth director. We have over 60 girls, and are expanding next year.

What is a mom as busy as me doing taking on this challenge? Obeying. There was a growing niggling in my heart, and I tried desperately to avoid it. Finally I made a phone call, hoping the position was full. Indeed, it was not. I shall be doing one full year of intern-type training before taking over the whole ship. I have been scared to death of doing this, but I know God is asking this of me. It has been confirmed to me so many times in these past days in Scripture and devotion that this is where I need to be. Now as my "One Month to Live" book has said, my only job as the branch, is to be connected to the vine (God). It is the Spirit of Christ who is responsible for the fruit I bear.

One Month to Live

Our Church is doing the "One Month to Live" Churchwide Challenge

Supposedly this is going to get us up and living the lives Christ intends for us. I sure hope so, and I'll keep you posted. My month starts tomorrow, but I've already sneaked a peak at the first couple of chapters.

Stay tuned for Christ's work in me and my church!

Thin Places

That was our sermon title today.

My ears were pricked, thinking that this was going to address times when you are stretched a bit thin. I have been in a spiritual drought for some time, and needed some encouragement. Since I feel like the taffy pulled version of Mike Teavee, I figured this was all about me. I was wrong, and right.

Let me start by saying that we listened to Kim Hill's remix/medley of Nothing but the Blood of Jesus on the way to church, and Bert was singing. That is always a gift when my not-so-verbal son belts out a serious spiritual in the back seat, so my heart was primed.

It was GEMS Sunday, so I was with my girls in the front row. I was on the piano side, and our pianist is nothing short of prodigiously gifted. It's as if he's channeling the flow of music directly from the heavens to his fingers. He can make "Twinkle, Twinkle Little Star" sound like a concerto. My heart was moved, and my spine chilled as we opened the service in songs of praise. It's been so long....

As the sermon started, I found the pulpit supply pastor to be someone who appears to be smiling, even when dead serious. His face a light of joy, his voice harmonious and full of inflection. He pulled out a less than well-used chapter from Luke 9:28, and started reading about the transfiguration.

I cannot reiterate here what all he said, but he spoke to me about the thin places. Not places where we are stretched thin, but places where the gap between earth and heaven gets so thin that the Glory of the Lord briefly spills over into our earthly experience. As the early spring sun shone through our century old stained glass windows, the gap thinned, and our heavenly father allowed me a glimpse of his glory. It was so real, such a heart-thumping experience, that I was sure the whole congregation must have had the Theophany along with me.

As the service came to a close, and the GEMS proceeded out, down the stairs, the grumbling of some of the ladies about the negligence of not using our theme verse from GEMS for the sermon (1 John 3:1) I realized that I alone had experienced that thin place. That God's glory had broken through for my benefit alone. I was humbled to realize that my Lord and Savior had seen fit to answer my feeble prayers of "I believe, Lord help my unbelief," and push through my earthly experience to touch me momentarily.

I don't know where this will go, but I do know that I drank of living water today.

I'm Never Gonna Get Tagged or Awarded Again!

At the rate I'm going in responding to the fun meme, and the award that I have recently been tagged for, well, who would blame anyone for passing me by in the future.

I assure Many Blessings and In the Life of a Child that I will attend to the fun you've bestowed upon me very soon. Thanks for thinking of me girls!

I am a bit concerned here that there are significant spiritual issues at hand concerning my attitude and frustration with the Rockstar. Please uplift her and me both and ask for spiritual protection specifically. I don't like the anxiety, fear and distress that is ever present lately, and in my gut I know there is evil at work in my psyche. It feels awful, just awful.

Thanks.

Underneath My Oven

I cleaned underneath my oven today, right after church. I knew it was icky for a long time, and it bothered me, just not enough to take care of it.

So today I got all busy and cleaned it out. Of course there was the dog hair, dust bunnies, remnants of food, and the few odd toys that had slipped underneath. There was a purple gumball (our gumball machine has not been in service for months). There was what once could have been a red peanut M&M. There was a sticky mess that was a spill that went nasty. I expected all that, in fact I expected worse.

What I didn't expect was that I found useful stuff. I found the lid to a container that I had saved, even though it was useless without the lid. One trip through the dishwasher and I will have a useful container again. I found the red sugar sprinkles that were MIA over Christmas. The container is still sealed, so I think I will wipe it all up and use them for Valentines cookies. So after all the work was done, I felt good and a bit more whole.

My spiritual life has been in the same ignored state as my oven. One of these days I'll have to get around to moving some heavy appliances and cleaning out my faith.

Patience

I have always wanted to be a more patient person. Patience is not in my nature to any great extent. In my quest to gain more patience, I have learned that the road to patience requires patience, if you KWIM. In other words, you don't learn patience in a hurry.

Is it wrong to pray, Lord, I need more patience NOW!

Rockin' a Rockstar

Yesterday I saw a note to herself that Rockstar had posted in her room. It said, "Your mommy is always watching over you." then, "Your mommy is proud of you."

Last night I had a dream about Rockstar's mom. We were searching for her mom together.

Rockstar needs me to be more of a mommy to her. I feel a very strong sense of calling to this, I'm being told.

Sometimes I feel like a teacher taking over someone else's curriculum 3/4 the way through the school year. I've tried blending it with my own, tired using mainly hers, tried so much.

My Rockstar needs me to be a mommy. I've been her parent, and done a good job, but every girl needs a mommy. I don't feel up to the task.

I know that when I am at a loss the the Holy Spirit will show abundant grace, I know because I am at a loss SO STINKIN' MUCH! ;-) Please pray for and with me that the abundant grace of the Spirit will be abundantly present in our home as I grow to love and parent Rockstar on a new and deeper level.

Blessings to you and Merry Christmas.

Ready or Not, Here it COMES

I know I've hashed this over here before, but why, oh WHY do pre-adoptive parents get so wound up in what type of child they would accept?

Checklists and questions and what if's. Drug or alcohol use by mom, physical impairment, developmental disability, race, color, creed or gender.

I understand the reasoning behind the agency's asking, but I still despise it. It further promotes an industrial feeling to adoption, and maybe I'm overstepping (but hey, it's my blog), but I really think that people may just be rejecting a chance to really see Jesus.

Since I have said it until my toenails fell of from lack of oxygenation, let me give you another example. My favorite local station is 91.3 WCSG. While listening last week, a key member of our local Down syndrome association sponsored a day, dedicated to her daughter Ruth, who turned 9 that day, and has Down syndrome. I do not have access to the exact words of the dedication, but she speaks of the lessons Ruthie has taught her, of the person that Ruthie has helped her develop into. In closing, she states, "God rescued me through you, Ruth Noel"

I cannot say it better. I was a Christian, a decent ethical person, and in desperate need of rescuing. God rescued me. Starting with Bert, then Rockstar, then Schmoozer.

Had God given me a checklist to fill out at the beginning of my pregnancy with Bert of conditions, which I could accept or decline, would I have put Down syndrome on my list? I don't rightly know, but I suspect I wouldn't have. 6 years ago, I would have told you, hands down, no way do I have the tools to parent a child like Bert. No friggin' way.

Had it been up to my own good intentions, would I ever have adopted a teenager? I know for sure, NO WAY! Not a chance, don't even think about it. I wouldn't have needed a checklist, it would have been a flat "no". Had I known that Rockstar would become ours forever, that she would grow to consider me her mom, that reconciliation would never happen, that I was in this for good, I'm not sure I would have taken her home in those early days, I'm not sure I wouldn't have pushed for her to go with her grandma, dad, or someone else. I would never have believed that I could parent her, not just house her.

I did fill our a checklist for Schmoozer. It was really pretty wide open, by then I trusted God, but would I have jumped in to try to adopt so quickly had I known just what a medical mess would follow? Would I have been so brave as to take my youngest son with full disclosure of all we have been through in this first year and a half with him?

Many people with a house full of healthy kids routinely tell me that God wouldn't give me more than I could handle. It's a cute, pat phrase, especially when you're not living it. God has given me more than I ever wanted to handle, he's given me far more than I ever wanted. He's rescued me, a thousand times over. Each and every struggle I broach with my amazing brood of kiddos brings me closer to Him. Each new voyage is to a place that my Lord and Savior has planned for me.

It is not out of spite that I get frustrated with those who say "no". I would have too. I feel sad for them. I know that God can and will and does work in each life differently, and can and will and does work in those lives too. But I just cannot help but believe that I had more blessings laid upon me than the average, simply because I did not have the chance to say "no" to them. My God has become so big, so real, so amazing to me, simply by virtue of the children in my home.

My God does not fit into any box, nor would I want him too.

And the Spirit Bore Witness

It wasn't a big deal, just a nudge. In my mind, I kept thinking I needed to say something. It seemed out of context, and I nearly ignored the nudge, but it kept nudging, so I spoke. Though I had no inkling, my words were an enormous blessing to someone who needed to hear them. What was only 2 sentences to me was a milestone to a friend. I am so thankful for the Spirit guiding our hearts and words.

Early in the night last night, Schmoozer started vomiting. It quickly became obvious that this was a CVS episode. We got out the Zofran and gave him a dose. He promptly vomited it. Immediately following the vomiting we popped in another dose (no need to fear OD, he is on about half the median dose). He retched a few more times, and started dozing. He dozed restlessly for nearly an hour, with loud bowel sounds and a bit more retching, then slept the rest of the night. This is unprecedented. This is our first attempt at using the Zofran at home, and praise Jesus it worked. No dehydration, no Emergency Room, no multiple IV attempts, no night in a clanky crib with me in a lousy cot. We stayed home, we made it. A bit of laundry and a tired clingy day, but we made it.

Christmas Blues

We always try. We try so hard to get our priorities straight, to make Christmas about Christ. We go to morning worship, we attend all the advent services, we attend the Christmas hymn-sing at church. We participate in the church Christmas program, we read the advent story in Luke before opening presents. We try so hard, but somehow Christ is always eclipsed by gifts. How do you rectify this situation? How do you go about focusing on the birth of the Christ-child, and not forget about him as soon as the Fur Real Friend Talking Macaw is opened?!

My kids know the story, they know their Savior. But on December 26 I always wake up feeling like we let Jesus down.

I PROMISE.....

to get to that 8 thing meme, I mean it, I promise!

Today I am still so frustrated. I'm not gonna lie, I hate Schmoozer's new diagnosis. I could handle surgery (been there, done that), I could handle serious intervention, but to be told that my kid is just gonna go down into a semi-conscious, limp state and vomit every 5-10 minutes for a day, roughly every 3-6 weeks, in an ongoing fashion, well, it makes me mad.

He's only 21 months, many kids don't start this until they're 3-7 years old, on average. He's already dealing with Trisomy 21, Hirschsprung's Disease, hypothryroidism, and Reflux, c'mon? At first this appeared to be a complication of his Hirschsprung's, something he'd grow out of, now we know that this is something with which he will struggle for years. We can make every effort to manage it, but it will still happen. Eating journals, special diets, etc, they can help, but the average school age kid misses 24 school days due to this monster.

All of this comes on the heels of a stagnant, dry period of faith for me. Remember all those posts of faith? Where have they gone? I read through my devotionals in a cynical haze, when I read them at all. The wonderful families in my church who were so helpful and kind at first have tired of trying to help our family, the cards, calls, and offers of help have dried up. After two years of trying I don't believe I'm any closer to getting Bert involved in the kids programs, and I'm just plain disappointed.

I'm struggling, I'm really struggling right now. I don't want to be strong any more. I just don't want to.

Prayer & Peristance

Today we have the IEP meeting for Bert to change schools. This is the result of much prayer and persistence. When I first heard of this school, they were full, but interested in keeping communication open. As time went by, these wonderful souls made arrangements to hire extra staff to get Bert into their fine institution.

Had I given up when hearing they were full, we would not be here right now. Had we not prayed for help and guidance, we would not be here right now. Prayer and persistence, like love and marriage, a horse and carriage. You can't have one without the other.

Bert, a History

A friend on the Down Syn forum posted the link to the Autism Speaks Video Glossary. All of those questions I had melted away. It is abundanly obvious that Bert is on the autistic spectrum. I find it fascinating, I can't get enough. Other kids are acting like Bert. I don't know anyone IRL who acts like him, so when I hit on something online, I'm fixated. I'm not alone!

I get really frustrated with my church in regards to him. Not for lack of trying, we have been totally unable to successfully integrate him there at all.

First attempt: Leejo teaches Sunday School. Bert was 3. He would run off on me in public, so we put door knob covers on the doors of the room. Mom's gonna teach Sunday School so Bert can participate. First time, he played in the corner by himself. No big deal, it takes him longer to adjust. The second week, he straddled my lap, and held my face in his hands about 4 inches from his face. I now know that he was controlling his environment. He would turn off the lights and cause all types of trouble. I was commited, but had the Chief take him home. First trial of integration failed, lesson: remove mom from the picture. (remember, at this time I had no inkling that he was on the autism spectrum, I thought his problems were hearing).

Next attempt: Our church policy is that nursery is for 0-3 year olds. There is a "Children in Worship" program for 3-7 year olds, divided into 3-5, and 6-7 year old classes. One of my friends is teaching the 3-5 year old class the year Bert is 4. I talk to her about him, and the class is in the room with the door knob covers, so we give it a go. I send him to nursery, get him out for CIW, and send him down. He played in the corner, but at least he was out of the nursery. At this point I know his hearing is fine, and think that if I just use really consistant discipline that he will grow out of his poor behavior. Well, week 3, my friend offers to walk Bert downstairs for me, saving me the trip. She walks him down, and unbenounced to me, allows him to tag along with the 6-7 year olds, cuz that's where he wants to go. The 6-7 year old teacher does not know him, allows him to run in and out of the room, and all over the church basement, then dismisses him with the other kids, unattended. Beaner and I go to find him, and he is GONE. He will gladly just leave the premises, walk out the door and just keep going, so we check outside first. Then Beaner comes back through the church gym, where a cake and coffee fellowship is being held for pastor appreciation. Bert has taken 7 pieces of cake, and eaten the frosting off while we were trying to find him. Big sigh of relief. Sugar buzz for the day. Not a single adult who had entered the room in the meantime stopped to help the little boy with DS who was obviously unattended in the gym. Hmmmm

Now this year. Mom gets smart. We try "God's Safety Zone", our church's alternative to VBS. Every Wednesday morning for the months of June and July. Mom secures a "helper". Unbenounced to mom Bert has the helper at her wits end by the end of the first day. They are rotating helpers, and allowing him to run the church and disrupt other classes (including Beaners, much to her mortification), because they can't get him under control. But nobody tells mom because mom obviously needs a break. Mom finds out just how bad it got when on the Mission Trip, Bert's designated helper goes on a vent about what a Pain in the Neck and how out of control he is in a small group, forgetting that Rockstar is his sister.

So we are back to square one. My 5-1/2 year old goes to nursery still. He freezes dead in his tracks if we even attempt to get him into the Sanctuary. I don't even know how to start trying CIW, or Sunday School again. I'm at a loss. Bert always has a BM in nursery, it's part of his anxiety, and the attendants can never manage to get him changed, he resists.

Part of me wants to jump ship, but I really don't think there's a better church for us just waiting on the next corner. We love so much about our church, but really grieve that there's nothing there for Bert. I am working with another mom, whose son has MD, trying to get programs going, but the fact of the matter is that there are no willing workers.

So we will stay committed to our church, and work to build a program that will probably be too late for Bert.

What to blog, what to blog.....

Blogging daily is a stretch for me. I have one day with 2 posts, so I don't have to blog every single day, but I want to save my skip for when I really need it.

So, I'm gonna ask you all to comment. I believe that sooner or later, everybody has their "for such a time as this". A time in life when you know that God has allowed certain things to take place in order to call you up for a task that he created you to do.

I have 2, the first, of course is trisomy 21. I know that some of the gifts and talents God has given me have been more than remarkably useful in raising and advocating for my sons, and that I have learned and gained as much by the experience as I have given, probably more. The other is my Rockstar. I know without a doubt that we were asked to step up and become her parents. It hasn't been easy, in fact, far more challenging than having 2 disabled sons, but by God's grace alone, we have managed to get by, learned a lot, and maybe, just maybe, been beneficial to her along the way~that remains to be seen. ;-)

So what about you. Have you had "such a time as this" yet in your life? If so, please do tell!

Oh, and if you like football, wasn't that a crazy cool game between Dallas and Buffalo last night?!

Beyond Overwhelming

This is what happens when I blog.


How can all this be happening in one house?

The Chief will be laid off for an indefinite period of time starting October 1 because our state has blown the budget so badly that they cannot afford to allow the state employees to work.

We are in the midst of ripples still from the threatening message Rockstar received last week, and our response. And she has been a grumpy, moody, ornery beast of a child to live with lately.

We are now in the full throes of decision-making regarding Bert's schooling, and in the process of getting a psych eval and behavioral diagnosis which I still believe is likely on the autism spectrum.

Schmoozer is sick again. So far we are keeping him this side of the hospital, but his tummy is over-reacting to something again.

Each of these individually would be enough to throw a typical family into a bit of a tailspin. I honestly don't know how we're holding together, I just really don't. Must be a whole lot of grace flowing our way.

At least the University of Michigan football team has won a couple games.

Scared

Petrified, actually. After blowing smoke about it for months, it appears as if our grand state is going to shut down operations for most of the month of October. What does that mean? It means my husband doesn't work, doesn't get paid, and because it's short term, doesn't get unemployment. To a family of six that is living on a starter salary of a civil servant, that is no small deal. I may go offline for awhile as cutting things like internet will most likely be essential. We have some savings and a Roth IRA we can tap into, but where does that leave us? I don't have a political spin on this, I'm not as politcally knowledgable or active as I once was. I do know that this is very frightening indeed, not only for me, but for the citizens of Michigan whose state law enforcement will all be absent for nearly a month.

As a person of great faith, I know that we will be fine. I also know that we will be stretched and learn and grow. After all I have waxed poetic on many a Christmas saying that maybe it would be good for our kids to go without so many gifts, just once, in order to reflect more on the Christchild. I guess that goes under the category, "be careful what you wish for."

I'm gonna go get my crying done before Mike gets home so I can be strong for him.

OK, so...

Without getting too much into it, someone threatened my Rockstar. It was not a threat I think would ever seriously be acted upon, but to a person suffering from PTSD as a result of years of abuse, neglect and agony, it's serious as a heart attack.

As the Chief and I were discussing what level of action to take about this, we went round about it a bit. He's off at duck school (quack quack) on the other side of the state for the week, so it was up to me to act or not to act. To act on behalf of Rockstar's bodily and emotional safety, a no-brainer.

Then the next level of action. Do we take the next step to ensure this threatener receives consequences? I have enormous issues with vengefulness. To make another person "pay" for their actions out of spite and anger is not right, it's not my job. What made me wrestle this over is accountability. I adore accountability. I think it's a staple of decent human behavior. If there were not some form of accountability for poor actions, even the best of us would have even more difficulty making it through a week doing the right thing. I can think of several times when I wanted to take a lazier, less admirable course of action, but the fear of accountability kept me to a higher course, and in the end saved my tuschy.

The other factor is that though the threatener is not yet in a position of authority, he soon will be, and I have great fear that others will be hurt if he continues on this course without being held accountable for deplorable behavior.

So after a bit of agonizing, we are taking action, and a certain young man will be called to account on his lack of judgement. There is a small piece of me that goes into momentary panic attacks, knowing that my action, or rather reaction will cost him his career. It feels rotten. But I just cannot stand the idea of him thinking he got away with it once, and then going a step further next time.

I pray that the ball that has been set in motion will in some way be beneficial to this person's life.

Church Frustrations

When we started attending our church, we thought we had found the best church on the planet. The music wasn't too rockin' for the Chief, there's another family who has a son with DS. Our pastor can rip out a pertinent sermon like there's no tomorrow. My goodness, what more could you ask for.

Then it started occurring to me that every time I volunteer to help out it's the same faces, every time, and that our church has the typical 20% of people doing 80% of the work, and the remaining 80% doing the remaining 20%. Well, good luck finding a church without that problem, so ya suck it up and deal with it.

Now we are hearing and seeing some really ugly things that are really hurting some really good people. Our youth directors are dedicated and loving. They made no hold barred efforts to get Rockstar involved, and now she is, due in large part to them. They welcome young people into their home whenever they feel like dropping in, they live their beliefs, and have done a fantastic job or reaching our kids.

Now many of the kids like youth group so much, that the ones who still live close want to attend even for a few years out of high school. While I think it would be best to have these older participants take on additional responsibilities for keeping the youth group running, and to have them there as mentors, rather than just participants, I see no trouble in keeping them there.

Now some in the church disagree. Their kids aren't Seniors like the Rockstar, and I could see where if my oldest child was a 14 year old freshman, having a 21 year old in the youth group would sound daunting. I would certainly be there asking questions and making sure all is above board.

But that's not what's happening. There are people screaming, fighting, calling names, pulling out all the stops to make life miserable for our youth directors.

I don't care if the directors are the nastiest people on the planet and are outright wrong, there is a good and proper way to deal with these things, and ugliness is not it.

I am just so sad. These are the pillar families of our church. What would this look like to invited guests? What does our church look like to the world? We look like hypocrites, plain and simple.

This is why so many good people who believe in Christ stay away from the church, this is why we have such a bad reputation in the world. This is all pride and sinfulness at it's worst.

I hope and pray we can work past this. My heart hurts so bad for my church.

Everything's OK

It is never good to dwell on a label for your child when said child is not near you at the time.

When Bert was born, I would leave him in the hospital and go home, and Down syndrome would loom large over my head and frighten, taunt and threaten me. I would return to the hospital and this sweet little cherub would be there without a threat in the world from things like "mental retardation" or "low muscle tone".

I returned home with Ben yesterday following his hospitalization during which Bert's upcoming evals and pending diagnosis visited me as nightmarish visions. My mind raced, and my head swam.

Then I came home, and my son ran to greet me, smiling and shouting "Bobby" (mommy). Everything's OK!

A Few Minor Epiphanies

First, Beaner is gone. I feel like part of me is missing. I feel empty, lonely, lost and disoriented. While she's been gone, there are adoption discussions on a favorite forum about relinquishment grief, in various areas. I am sitting here feeling all sad and sorry about missing Beaner who will return tomorrow (Lord willing), and meanwhile posting alongside mommies who never get to hold their babies. My heart aches for them.

Second, I realized that if all kids with DS were like Bert, that there would not be summer picnics, holiday parties and outings for the Down syndrome associations because nobody would go. The parents wouldn't take their kids, because it would be so exhausting that it wouldn't be worth going to the party, just like it is for us. I have found an awesome forum where parents of kids with DS discuss these things. I have realized that my son is not a typical child with DS. I am so thankful that we are pursuing help. At the same time, I am thankful for the personality he has, it is a gift.

Third, talking with Rockstar yesterday, I realized that God has blessed us amazingly with harmony and unity in our family during all of the trials of the past few years. With the stress of Rockstar's mom's decline and death, the Chief's parents, Phil and Millie with their alcoholic troubles, Schmoozer coming along with his unforeseen health trouble, Bert and his behavior, and the Chief being away most of the time for 10 months, I am amazed that our family is not in shambles. God has blessed us with ties to bind us together. I am humbled, amazed and in awe of our Father in heaven who has blessed us so abundantly.

"Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything." James 1:2-4 NIV