The Road Not Chosen

The Walk

Next Saturday the students that Evan graduated from high school with will be graduating from college. We will watch them walk across the stage, holler and clap like crazy for them. Having watched them conquer the mountain that is a college degree I am very proud of who they have become. They are great young adults!

Here’s the secret thing that parents of intellectually handicapped kids don’t talk about: the knife that goes through our hearts knowing that our kids won’t make that march across the stage. It is not a knife of jealousy as we learn early on that is a fruitless emotion. It’s just pure parental pain of once more letting go of the dream you had for your baby before he was even born.

It is a very well documented fact that parents of special needs children go through the grieving process several times during their lives and I can testify that is true. Each milestone that other kids race past without even thinking about it, is one that my kid may or may not reach.

In talking about this I am not looking for sympathy or a pat on the back. (Although loads of dark chocolate would help!) I just think that sometimes we keep too much of this grief bottled up inside which is so not healthy.  Moving past that stab of if-only pain won’t take long but this is a huge owie for me.

Of course, I count our blessings, always. Four years ago this month, Ev was in a body cast and about to face a fight for his life so obviously I’m grateful he’s alive. He is at a happy place in his life. He loves his job & many friends. Yet it seems that at these junctures of life he knows that things aren’t quite what they are for his normally abled friends.

Life will settle back into its comforting routine next week. I will remember that my son walks across a stage not seen with human eyes. One day I’ll see him get a reward for finishing the school that has been his life. And on that day I won’t even remember this week & its pain. I can’t wait!

 

He Takes the Gold!

Ev competed in his 1st Special Olympics regional bowling tournament today & he won a gold medal! Over 100 athletes competed. Evan won his division but we’re not sure where that stacks up as far as going to state. Here are some pics from the event, which are from my cell phone so the quality isn’t that hot.

 

 

What A Working Man Looks Like

The Week of The Wacko Bureaucrat (& a couple of sane ones)

You know how life is just kind of rolling along and then all of a sudden it spits up all over your nice blouse? That is what Monday was like. We had a meeting with a caseworker from the Bureau of Special Healthcare Needs to see if they would continue the funding for Evan's aides. This is a lady who had always been very helpful in the past. After some pleasantries and inquiries into our son's health, she basically told us that Evan absolutely needed to be placed in a group home by the time he turns 21 (nine months from now). We explained that a) he still had ongoing health issues, b) he still has not recovered the ground he lost developmentally & emotionally during his illness last year, and c) we thought that was too soon to make that kind of major move.

She told us (several times, in several ways) that we were clinging too tight, weren't letting him be his own person, weren't accepting the fact that he is an adult now (Hello! An adult with an I.Q. of 64-ish!!) and so on. It's moments like these that I can feel the constraints of my Christianity, which saved her from a rather raw diatribe from me! Then, to our utter astonishment, she relayed what she felt like sending her son off to college and that she survived that just like we would survive putting Evan in a group home. (Uhhh---she didn't just say that did she? Thanks for rubbing in the fact that your kid gets to go to college and ours "gets" to go to a group home!) If Evan hadn't been in the room with us all hell would have broken loose, believe me!

Harold firmly told her we were not going to do any such thing. She said they were ending the funding at that time then what would we do? Harold told her that was our problem. I told her we weren't going to move Evan out just because of some weird bureaucratic deadline. She kept saying we didn't have a transition plan, we kept saying we had a great one until Evan got sick and now we have a new one that is in process as his health can tolerate it and as we can get all the agencies to play nice with each other. The meeting ended on a chilly note. The next day she called me to say the Bureau was ending funding May 31st. "Thank God!" is what I had to say to that news. The plan is for our Regional Center to pick up funding that will enable us to have Evan covered during the weekdays.

So on Wednesday I put on a clean blouse in hopes that life's tummy would be more settled that day. And it was. We met some nice people from a group called Learning Opportunities who will be sending aides to help Evan work on dusting off his community & life skills several hours a week. They will take him shopping, to the library, video store & other activities. They are also going to work with us on finding a volunteer job for Evan where he can ease into working on some job skills. These people were all about the possibilities and the words "group home" were never mentioned. We breathed a sigh of relief.

As I relayed Monday's events to our friend Patsy, she said "He is in a group home. It's called the church! We are a group and Evan's in our homes all the time!" Amen to that.

Future Options

We had our "big" meeting yesterday with several different agencies involved with helping plan Evan's future. It was a full table. There was a representative from: Vocational Rehabilitation, Learning Opportunities (a job coaching service), Regional Center (2 people), Senate Bill 40, Evan's former Sp. Ed. teacher, Harold & I. Whew! (Evan's boss from RAIL was unable to attend.) It was good to have everyone together at one time to compare notes & start working towards the same goal.

So what did all that get us? We learned of some funding sources that will enable us to get someone who can take him to physical therapy 3 times a week, which will be a huge help. Those same funding sources should be able to provide an aide to be with him during the hours when Evan isn't working but we are. The interesting thing about that discovery was that we have been asking the Regional Center case manager if there was any funding for exactly that. She always just put us off & acted like it didn't exist. However in yesterdays meeting, as she sat at a table with all the other agency reps, the SB 40 director looked at her & said, "There are funds available for this, correct?" My mouth dropped open when the case manager said yes! Where was that answer 3 months ago??? As Evan's Sp. Ed. teacher observed, some people just need pressure on them to do the right thing.

In some not-so-great news, we got a phone call today saying that Evan's funding for the aide he has now, which is through the Bureau of Special Health Care Needs, will run out by mid-November, not the end of the year like we had been lead to believe. That would have been a wonderful piece of info to know yesterday when we were telling everyone our son was covered until the end of the year!

All this juggling gets very tiring. I really miss the routine of Evan's school days, when I knew he had somewhere to go & something to do 8-3, Monday - Friday. At the moment I am pretty overwhelmed & in serious need of a vacation! We planned as best we could for his future & I know things will eventually even out. The getting there is a pain in the tuckus though.

In other news, I am trying to decide on the next novel my L/A class will read. Should it be "Tale of Two Cities" or "The Brothers Karamozov"? What do you think? I'm having them do NaNoWriMo in November, a move that made a couple of them happy & a couple not so happy. It'll be good for them though. Like eating spinach, only more creative. The NaNo people have come up with an actual curriculum for classrooms this year, which will help the kids get off to a strong start. While I won't be NaNo-ing in November, I do have 3 semi-decent stories from the past years I've done it.  Check out the website for more info, if you've never heard of it.

Technorati Tags: NaNoWriMo

First Steps

Evan had his first job interview yesterday. We are working with several agencies with the goal of helping him find employment in a secular setting. By that I mean that he has only worked at our church before. While this is great & something that will certainly continue, we feel it's important for him to work in the community with people he hasn't grown up around. Our local Advocates for Independent Living office offered him a part-time job one morning a week doing office work. They definitely want to work it into a paying position with a lot more hours. Right now they will be getting to know what his talents and abilities are so they know what he is capable of doing.

I will take him there the first couple of times and then he will be taking the OATS bus. The OATS bus "provides reliable transportation for transportation disadvantaged Missourians so they can live independently in their own communities." In other words, it's like taking a regular bus, but is free and they will make sure Evan gets from Point A to Point B, without getting off somewhere he shouldn't (like the video store!!)

It's interesting how God has brought the right people into our lives at just the right time. This has happened over and over again throughout Evan's life. At the moment we are blessed to have a wonderful advocate named Nan from our local SB40 office. Senate Bill 40 Boards are local county boards for mentally retarded and developmentally disabled adults founded by Mentally Retarded Citizens of Missouri in 1968.  The tax levy, approved by local voters, provides funding for residential, vocational and other related programs and services. (Just in case you wanted to know!)  We received SB40 funds this year to help with our personal costs involved in Evan's hospitalizations, such as hotel bills, gas, food, etc. Each DD adult in Missouri is entitled to $2,000 per year to help cover costs that insurance & other funding does not cover. What a huge blessing this is!

Anyway, Nan saw our difficulty in getting all the different agencies involved in Evan's life to work together. Apparently she has a tremendous gift of persuasion (either that or she knows a lot of dirt on these people & has blackmailed them!) and has pulled together a meeting for us next week. At this meeting people representing 7 different agencies will all sit down at the same table & help us brainstorm ideas for this next phase of life Evan is in. This is something that Evan's case manager from the Regional Center is supposed to do (& has been asked by us numerous time to do) but has not done. We are just very grateful to God and to Nan who are both working on Evan's behalf.

In other news, I am appalled that Newsweek had Christopher Hitchins, well-known Atheist, review the book about Mother Teresa. Isn't that kind of like asking someone who hates movies to review one? Or someone who doesn't believe in love to write a love poem? Maybe no one else was available that week...

Playing Catch Up

Well, dear reader, if you have been wondering what I've been doing the last 10 days I'll try to fill you in. School started on Aug. 22nd & that meant I plunged back into my 11th & 12th Grade Language Arts class with great joy & anticipation! We kind of alternate years between teaching primarily Lit. one year & primarily writing & grammar another. This is the writing & grammar year & I have thrown in a heavy emphasis on vocabulary. Each student got a brand spankin' new Merriam-Webster Collegiate Dictionary. Happily, 3/4th's of my class was very excited about this. We tackle about 10 new words a week plus a couple of bizarre words that I throw in for good measure. In an attempt not to bore them to tears, we are reading a few books. On Friday we started Animal Farm, by George Orwell & will be working through that for a couple of weeks.

On the non-work front, last week was the week of doctor appointments, mine this time, not Evan's. With all the brouhaha surrounding our son the last few months, my "issues" have been left on the sidelines. For several months, my ears & jaw have been hurting. After a visit to a specialist Monday, I was diagnosed with advanced TMJ & arthritis of the jaw. He told me the news very gently, like I was going to be upset. My response was basically, "Whatevah!" I just don't have it in me right now to get upset by stuff that all I can do about it is pray anyway.

Evan continues to adjust to being a working man. He does tire easily so we have to be careful with him. He had a blast this weekend with his friends, one of whom has a Wii game console. Evan apparently took to it like a duck to water, much to the joy of his friends! He, of course, now wants one!

We've had quite strange wrangling's with our county probate clerk who oversees our administration of Evan's assets as we are guardians & are accountable for how we spend Evan's money. It's been quite the process that has taken place over the last 4 months, trying to get things in a format she likes. All communication has been between our lawyer & the clerk, which probably wasn't the best thing in retrospect. He kept telling us we needed to change this & that, get canceled checks, don't get canceled checks, blah, blah, blah.

Finally, we got fed up and decided to go to the source (the probate clerk) for a detailed explanation of what we needed to do. Harold met with her Friday & we were astonished to find out that Missouri has few set laws or format for the accounting of funds in guardianship cases. A lot of things are just up to the judge who signs off yearly on how the assets were spent. We found out several things we were doing wrong that our lawyer either didn't make clear to us or didn't tell us about. We also found several things that were just up to the judge's discretion. Harold got to speak to her also. (It's one advantage of living in a small town that you go to the courthouse & you're probably going to run into whomever you need to see.)

Apparently my obsessive receipt keeping & notations of every penny spent threw the clerk & judge off. It was too much information for them. How that can be I do not know. I mean, we supposed to give an accounting right?? Instead of either writing a check or using Evan's debit card so there will be a record of what is spent, they just want us to write him a check a couple of times a month for cash. And, no, we don't have to account for how the cash is spent. On one hand this is easier. On the other hand, if we were evil people we could be buying lottery tickets or meth with that money for all they would know! *Sigh* At least it will be easier next time around. I hope.

Our Labor Day weekend has been fun & we've had some time to relax. Hopefully, yours was the same. Off I go for a snack & then early to bed. Have a good week!

Home From The War

That's how I feel: like I've been on the battlefield and am now having to acclimate to "civilian" life again. We brought Evan home from the hospital Monday evening. It was so wonderful to come home to a clean house, courtesy of Kristen, & to sleep in our own beds. Evan tires easily but that is to be expected.

Yesterday our church had a wonderful picnic out at the Allemang's ranch. There was lots of food, fellowship, volleyball, & swimming. Evan wasn't strong enough to participate in the volleyball games, but he sat on the sidelines, always with a friend by his side, cheering everyone on.

While it was wonderful to be with our friends, I just kept feeling a bit disoriented. I think the intensity of the previous days was catching up to me. When Harold & I were in the midst of it all, we didn't really have time to process the full implications what was happening to our son. We couldn't really take time to think "Oh, our son only has a 25% chance of making it." Now that we are home, the "what could have been's" are coming upon me. As I watched kids playing & Evan with his friends, I caught myself thinking, "We could have had to bury him last week!" Don't get me wrong, I am so grateful that God spared his life. It's just that the enormity of what Evan just survived is ...well, I don't really have words for it or what I am feeling.

Thanks again to all who prayed, especially Evan's wonderful group of friends who despaired at the thought of losing him, but got to see the mercy of God instead. My wonderful hairdresser, Kim, told me today after cutting my hair, "I hope the next time I see you, you have nothing but boring things to tell me."  Yes, let the boredom begin!

 

Technorati Tags: Chrisitanity, healing

Almost Out Of The Woods

Let me begin this post by saying Evan is much better. Now for the details. He had one type of bacteria & one type of staph in his blood. The names escape me at the moment. The Broviak line was indeed the culprit for the infections. That was removed from his chest on Monday. Ev has been on seveal different antibiotics which have changed as they zeroed in on the specific bugs. As of today he has no more infection in his bloodstream.

The length of our stay here kept changing daily & changed 2 differnt times yesterday AM. The current plan is that we will hang out here until Moday, while Evan receives IV antibiotic therapy & generally recovers from the septic shock. He will then go home on just oral anitbiotics. His body has develped Vancomycin Resistant Enterococcous, so he can't have Vanc infusions anymore. THis VRE is something he will have the rest of his life & something Harold & I will have to be careful not to contract. Ev is in isolation for the duration of his hospital stay, which is a bummer as he is feeling pretty good & wants to do something fun!

With each converstaion with the docs here it becomes clearer how close to death our son was on Saturday. I was asking God yesterday morning why Ev had to have this close call. About an hour later his Infectious Disease doc was telling us several things that were starting to happen in Ev's body that they wouldn't have found out about if he hadn't gone into septic shock: the VRE, some mild damage starting to happen to his kidneys as a side effect of the Vanc. treatment, and a couple of other things that would have had some serious long term effects on his health. So this was a (stressful) blessing in disquise.

Another blessing is that Evan's hip surgeon came by Monday to examine him & declared that he no longer needed his brace. So he is walking unencumbered.

So a week ago today our summer outlook was 3 more months of IV therapy twice a day, having to be home every night by 8 for the infusions, no swimming, or showers but now Evan will go home with no tubes of any type in his body, on oral antibiotics only & able to swim & shower & stay out late at night. We are rejoicing in that!

Harold & I are now exhausted & are crashing from the 3 or 4 days of adreniline-stress rush. We look forward to Monday! Thanks to everyone for their prayers & love.

Stretched Yet Again

It's been a scary weekend for us. Evan woke up Saturday morning at 5:30 with chills that rapidly turned into vomiting & a high temp. By 9:30 Harold decided we should call Home Health just to be on the safe side but we were pretty sure it was a stomach bug. The nurse came to the house, examined Evan & called the Infectious Disease doc in the Big City. The doc wanted Ev to immediately go to our local ER.

We jumped in the car & got Ev there right away. Fortunately our good friend, Dr. Jerry was the ER doc that day. After a preliminary exam it was apparent that Ev's blood pressure was decreasing rapidly & his heart rate was rising. We were told that he was in septic shock, which means that there was a system wide infection in his body. HIs body was working hard to keep his major organs functioning. The doc's in the Big City pulled together a team & flew to our town to get Evan & fly him back to Children's Hospital. Our friend & pastor, Tom, stayed with Evan at our local ER until the team got to our town. We got in the car to make the 4 hour drive, hoping to get to Children's before Evan. He has been in ICU since Saturday evening.

It was a scary 24 hours but tonight he is resting comfortably listed in critical but stable condition. They have determined that he has an unknown bacteria in his bloodstream that probably came in through his Broviack line in his chest. It will be a couple more days before they know exactly what type of bacteria it is. They have done lots of tests: echocardiogram to make sure he didn't have bacterial endocarditis (he doesn't), an ultrasound of his hip to make sure there was no infection at his surgery site, (there isn't), & various other tests.

He is hanging in there, but is cranky & not feeling all that great, obviously. We have been told this will be at least a week stay. We are praying that God will touch Evan's body & heal him just like He did with the femur. Speaking of which, several Dr.'s & nurses have come to ask us about the femur surgery that didn't happen. Apparently it is written up in Evan's medical record & no one can quite believe it! We are more than happy to tell of God's goodness.

Prayers, as usual, are appreciated.