Pastor Paul’s Musings

We drove straight through on Sunday, leaving Simi Valley about 3:15 pm and arriving at our hotel in Provo, Utah, almost exactly 11 hours later. After sleeping in, we went to Heritage and reunited with Jonathan. It was a wonderful feeling and a great reunion.

We had lunch at Kneader’s, an AWESOME place if you’re ever here. Well, Colleen and I got our lunch there anyway. Jonathan and Josh decided they wanted …. McDonald’s. Whatever!

After spending the afternoon together, we dropped  Jonathan off back at Heritage until the show this evening. He did awesome! They ALL did incredible! You can see a couple minutes of video on my Facebook page. One of the aspects that Heritage is known for among residential therapeutic schools is their top-notch performing arts program. Every aspect of the program was excellent, from sets to costumes to the performing arts center to the acting, dancing and music. It really was incredible!

Somewhat unfortunately, this is also the last week of the class I’m enrolled in. That means a couple of assignments to do, including completing my 10+ page research paper, a 50 question quiz based on reading I’m a bit behind in and a couple of discussion board replies. All due Friday night by 10:00 pm (Utah time). I’ve been whittling away at that a little bit at a time throughout yesterday, today and tonight.

In the morning, we’ll do family therapy at 9:30 am, come back to the hotel to check out and head to Midway, Utah. It’s about 30 miles from here. We’ll be there until Friday, when we bring Jonathan back to Heritage and have another family therapy session before heading toward home.

That’s it for now. I’ll be posting through the week.

This Sunday, December 11, Colleen, Josh & I leave for our drive to Provo, UT to see Jonathan for his 16th birthday! His birthday is Wednesday, December 14.

We hope to do the 11 hour drive pretty much straight through so we can rest on Monday before seeing Jonathan in the school play (a BIG deal!) on Monday night. We’ll see how Colleen does with the drive. If her joints don’t cooperate, we’ll stop somewhere along the way and spend a night.

On Tuesday morning, we’ll do a therapy session. As long as all goes well, we’ll head to Midway, UT, all four of us, for three nights there. Both of the boys want to learn to snowboard, so we’re looking at places to go. Not real sure what the snow conditions are like.

On Friday, we take him back to Heritage, do a debrief of our time with the therapist and then start the drive home. We plan to stop overnight on the way and then arrive home on Saturday, December 17.

Some have been asking about birthday and Christmas gifts for Jonathan. If you want to send him a card for either day, his address is:

Jonathan Kuzma
c/o Heritage School
5600 N. Heritage School Dr.
Provo, UT 84604

If you’re considering a gift card, we are told that money is easier, especially cash. It will be placed in his student savings account and he can spend it on a trip to the store when he gets to go.

If you want to send him a gift, you are welcome to do so. If you’re not sure what is safe to send him, feel free to contact me or Colleen and run your idea by us. His wish list includes World of Warcraft novels, a nice clock radio and candy (he can receive this only for his birthday and Christmas).

For his birthday and Christmas, you can send his gift wrapped, as long as we are sure that it is something he is allowed to have. They (and we) hate the thought that he might open something that is not allowed. Again, be sure to check with us just to be sure.

Hope you’re safe on Black Friday! Apparently, some are not!

I couldn’t help but to post this after reading my newspaper this morning. I really hope it’s not prophetic in nature!

Your thoughts?

Well, the final day of Parent Weekend at Heritage went very well. We picked Jonathan up Sunday at 9:00 am and then went straight to a session with our therapist. We reviewed the events of the weekend, sharing a number of details with him about how well Jonathan did on the off-campus visits.

When grabbed lunch at Smashburger (a new place for us all) and brought it to our hotel, where we enjoyed it out in a beautiful gazebo and spent an hour or so swimming in the hotel pool. After a short time of sunbathing and connecting in conversation, we retired to our room, where I had quite a bit of school homework to complete. Jonathan and I enjoyed some football together while I worked as well. Watching football together is a favorite activity for me and Jonathan, so it was nice to get to do it again with him for an afternoon.

In the evening, we were able to  get online for a video conference with my sister, April, who lives near us in Simi Valley, and my brother Steve, who lives in Garland, Texas. It was a great hour of Jonathan and them conversing about what his life is like at Heritage. Near the end of the call, as my brother and sister were encouraging him, tears began to well up in his eyes.

Right after the call was over, he laid on the bed and just started sobbing, which got Colleen and I crying with him and comforting him. When he was able to compose himself and we asked what he was feeling, he just said, “I miss my family so much!” As hard as that was, it was a good thing to see and experience with him.

After a good cry together, he wanted to get some Krispy Kreme! Right next door to our hotel, with only two store sin all of Utah, could there be a better comfort snack? Off he and Colleen went while I completed my last assignment.

We enjoyed a day of being together, talking, laughing, watching football, eating and even sleeping together, as he got to spend the night with us. In the morning, we ran a few shopping errands for Jonathan before we headed him back to Heritage and then made our trip home.

All in all, the weekend couldn’t really have gone any better. Our next trip there is schedule for the week of December 11. Jonathan is in the school play, one of the things which Heritage is very known for, their production arts program, and it shows that weekend. We’ll drive out, this time with Josh, on December 11, see Jonathan’s last show of A Christmas Carol on the evening of December 12, and then do a family therapy session on December 13.

Depending on how Josh is doing with everything, we hope to take Jonathan off campus with us for 2-3 days nearby to celebrate his 16th birthday, which is December 14. We’ll also celebrate our Christmas since we won’t be together for it this year. When we return him to Heritage, we’ll do a follow-up session with the therapist to review how things went and what needs to be worked on further.

From there, if that trip goes well, we’ll look for some time within the first months of 2012 for Jonathan to make his first home visit. As we understand it, a few of those must be done successfully for Jonathan to continue to progress through his program and complete it successfully. He has a number of “phases” and “stages” he has to work through to “complete the program” and be eligible to return home.

Just to clarify, there is no timeline or schedule for this to happen. Each student works through their own program and they take whatever time is needed to do so. The treatment team for each student meets every Wednesday to review progress. The school district IEP (Individual Education Plan) Team meets every six months to review progress. Our first IEP Team review happens on October 10. The one year review takes place around April 1 for us. Those meetings take place by conference call, and the entire Heritage Treatment Team is on thos calls to navigate Jonathan’s progress and make recommendations to the IEP Team.

The weekend wasn’t without challenges, particularly Jonathan’s stated desire to be somewhere closer to home and to finish the program before his Junior year of High School. However, he handled all of our conversations very well, and best yet, he actually conversed very well with us. It was good, solid, back and forth communication.

We let him know that we have no plans to pull him early and that the treatment team at Heritage would be the ones to ultimately let us know when he is ready to return home. Even though he strongly communicated his desires, he accepted our replies and says he even knows that being at Heritage right now is good for him and all of us. That alone is worth the pain of being separated right now. As hard as it was to leave him again, we came home with great hope for the future!

It’s late Saturday night. It’s been a very long, but fulfilling day. Our time with Jonathan could not have gone any better really. That’s with all things factored in, given truth AND grace, both of which are so vital to the life of any given relationship. We recognize clearly that this environment, even when we’re “off campus”, is only partially real, and meant to be a test for us to see how things are progressing.

We’ve had light conversation AND hearty discussions. We spent some time agreeing on some thing AND disagreeing on others. We shared about how difficult it is to be apart AND reaffirmed both his and our commitment for him to remain at Heritage to completely finish the program. We have our definition of what that means and he has his wish of what it would mean and they aren’t the same. And that’s OK. We shot some hoops together and read the 15 page autobiography that he’s written while here.

A very fun and spontaneous moment occurred tonight that had nothing to do with Jonathan, and he was glad to have been there to witness it. After dinner, we spent some time at a local mall here. While Colleen was off doing something, Jonathan and I perused a Kay’s Jewelers store.

Most are not aware that for some time, Colleen has been without her wedding ring. It was her original, thus 25 years old, and wasn’t the best quality to begin with. She lost the stone in it quite some time ago. I kept trying to get her to shop with me for a replacement, but with everything going on these last couple of years, it just hadn’t happened.

Well, tonight it did. She picked a beautiful ring and Jonathan just seemed to really enjoy the experience. He even remarked, “And I got to be here for it!” It was a very special and spontaneous experience that we were so glad to have enjoyed together.

Tomorrow morning, when we pick Jonathan up for the day together, we’ll start with family therapy and go from there. Between some school work I need to get done, some shopping we need to accomplish to prepare Jonathan for Winter in Utah and a lot of time on our hands, we’re anticipating our biggest test yet.

A few of our friends have left greatly encouraging messages for us on previous blog posts as comments and as responses on Facebook, as well as through text message. Thank you everyone, from all of us. We do sense God’s hand on this trip in remarkable ways, and know it’s because of the care, love, and prayers of those of you following us.

Until next time….

We arrived in Utah Thursday a little after 4:00 pm Mountain time. We had originally planned to drive right to Heritage for a therapy appointment, thinking we were landing at 3:00 and could be there at 4:00. However, I misinterpreted the itinerary and didn’t include the 1 hour time change. Thus, it was too late to do our planned therapy and didn’t get to see Jonathan.

After we landed on the flight, seated almost all the way in the back of the plane, we waited until most of the plane was cleared before getting off. While waiting, we struck up a conversation with a lady we shared a row with. She was engrossed in a book during the flight, and we did the same. We discovered she was traveling to Heritage for the Parent Conference as well! The flight was packed, and I’m not sure the chances we would sit next to another Heritage parent was very high.

After the evening session, we joined the other parents in the cafeteria for a time of snacks and networking. Lo and behold, we met another couple there for the first time from our city as well. It was so interesting to swap stories. The support group we have joined near home for parents with kids at residential treatment centers has a mantra – “We have the same kid!” Even though circumstances are so different and diagnoses are varied, there are such similar struggles we’ve endured!

I really dragged out our time in the cafeteria in the hopes that maybe Jonathan’s unit would be brought by and we would get to see him, but it was to no avail! My anticipation bubble was burst!

After a restless night of sleep for both of us, we finally got to reunite at 8:30 this morning. It was a tremendous feeling to be with Jonathan after not seeing him for 4 months! He looks great physically, having lost 36 pounds since we last saw him. He had gained quite a bit of weight from being on Lithium as a mood stabilizing medication. We had him weaned off of it after coming to Heritage since he is in a safe place to do so with very close supervision and monitoring.

We don’t know what the long term holds, but he has handled it very well so far. Being off of the Lithium has resulted in his weight coming down significantly. We really enjoyed our breakfast together and had some really good initial conversation on what it felt like to be together again and what the weekend might look like.

The rest of the morning was spent with Jonathan’s unit of students and their parents working through two therapeutic recreation activities. They’re meant to give us a feel for what the students experience and also serve as an activity for us to actually participate in recreational therapy as a family. The picture of me and Jonathan here with head bands on was during a game we played having to do with identity. Won’t bore you with the details.

After lunch with our therapist, who helped us strategize how we would communicate the weekend visit boundaries to Jonathan, we got to meet with all of Jonathan’s school teachers, nursing managers and his residential staff. He’s doing amazing in school, currently carrying a 4.0 GPA and has been on the Honor Roll each term here so far!

Every one of his teachers went on and on about how pleased they were to have Jonathan in their class, how helpful and respectful he has been. Our hearts could not have been any more glad!

His residential staff is also pleased with his progress and of course, since they work with him for most of the time in any given day, they are able to see some of his social weaknesses that need strengthening. They really seem to know what they’re doing here in their work with these students. We again just feel that Jonathan is in the BEST place he could be!

After a workshop on Building Relationships With Your Teens Using The Gottman Approach, we spent some time with Jonathan explaining the boundaries we wanted to set for our visits. While he is eligible for off-campus visits, we had initially decided we would do today’s visit ON campus. We were quite uncertain about what our interactions would be like and wanted to go slow on metering out our trust that he wouldn’t cause any problems in coming back in the evening.

Due to the very positive ways we had interacted throughout the day, how well he has done since here and how well he handled the discussion about our visit boundaries, we decided to go ahead and take him off-campus for dinner. We very much enjoyed a dinner at Texas Roadhouse Grill, where this picture was taken.

Afterward, we spent some time at Barnes & Noble and had some good, healthy conversation about a few issues. Not all heavy issues, but just some healthy disagreement and discussion. It was very good dialogue and I was pleased with how he handled it by and large.

We are looking forward to the rest of the weekend. Tomorrow holds an assembly with all the parents and students featuring inspirational guest speaker Chad Hymas, two work shops and a support group. In the evening, we’ll have another visit with Jonathan. We haven’t fully committed to off-campus, but have let him know it all depends on how he handles the interactions throughout the day. We’ll check in again with another post in the evening!

It’s the middle of the night as I’m writing this. I’m a sleeper, meaning I like my sleep. But tonight it evades me. Maybe it doesn’t evade me as much as my stomach’s rumblings keep me from slumber.

Most reading this know of my challenges with gastroparesis. Even though I have gained most of the weight back that I lost through 2010 and generally look and sound like I used to, the disorder remains an issue. I’ve learned to adapt and my threshold for nausea has become higher.

I experience an episode or two, or three, daily, but they are usually low intensity. Every once in a while, it flares a bit more, but rarely does it keep me awake. Like I said, I like my sleep, and I find that my body does too!

Tonight, there’s no telling the why’s or what for’s that rumble my tummy. I suspect it’s nerves. Around 4:00 pm or so Pacific time, Colleen and I will be in Mountain time, in Provo, Utah. We will attend this weekend’s Parent Conference at Heritage School, where our youngest son, Jonathan, has been living since May 2.

We are very much looking forward to the weekend. We haven’t seen Jonathan, other than on our computer screen for our biweekly family therapy session on Skype video, since the first Parent Conference we attended in mid-May. We miss him something fierce, and did not realize how true this would be for us, given the chaos we lived with for so long.

Feel free to click “Jonathan” in the category list if you’re unfamiliar with our story.

While we are excited to see and be with him, we also know that he is where he is for some serious reasons. There have been no humungous changes for him since he has been there, but the therapist is helping us to shelve our expectations of monumental change in exchange for the reality of incremental change. And there have been some good, small steps he is taking, for which we could not be more proud of his courage and tenacity in the face of probably some of the hardest days of his young life.

We celebrate that, but this isn’t a vacation trip. It’s a work trip actually. Colleen and I will continue to be educated in the intricacies of parenting in the face of our challenges with Jonathan. And we’ll do more family therapy. And we’ll measure out how much trust we find ourselves able to extend based on how our interactions go and how Jonathan chooses to handle them. We may even get to take him off campus if things go well enough.

Last I wrote, Colleen was still facing challenges with tapering off the prednisone. She still faces them. Last week was very difficult, but a corner was turned on Friday that has sustained until now. We’re grateful for that. It’s probable/possible that her lupus challenges this Summer are related to the stress we’ve endured with relocating Jonathan and getting him the help he needs.

We are glad she is feeling much better and more able to do this trip, not that she had ANY sense of NOT doing the trip, no matter how bad the last couple weeks were at times. I may have had doubts about whether or not she could or would be able to do the trip, but not her. Never wavered. Not once. The worse the pain was, the more determined she was that she was doing this trip. That’s my Colleen!

All this to say, we have no idea how the weekend will go. We move forward with some trepidation. Oh, hear me clearly. Our excitement to see him and be with him has not waned. I can hardly. wait. to. see him. And our hope is not faded; it’s in Jesus, Who gives us the ability to move through things like gastroparesis and lupus and whatever else to do what must be done.

This has all been such a lesson to me how true it is that no matter what we face on this earth, it doesn’t have to dim our eternal hope, trust, faith. Forward with trepidation. It’s OK to just be OK.

We’ll see you from Utah!

While the beat goes on, we’re ready for a different beat! Colleen has been working her way down on the steroid dose more slowly. A little over a week ago, we got the good news that her sed rate (the blood work number that tells the level of inflammation in your body) was all the way down to 5! Her doctor was hoping it would get down to 20-25.

She got the ok to go down to 50 mg, and did so for one week, then took it to 40 mg. Monday to Wednesday, she had just a slight sense of what she calls “awareness” in her chest. Told her doc about it Wednesday morning, and she ordered her to remain on 40 mg for an additional week. Wednesday afternoon, the “awareness” faded away, which is good.

We had planned to head to Pismo Beach after church tomorrow for a quick getaway. However, a slight mishap has changed our plans.

Early this morning, Colleen headed out for a walk with the dog. Getting to the driveway, she noticed someone coming around the corner with his two dogs, neither of them on a leash. She stopped on the driveway with our dog, Charlie, to wait out the two unleashed dogs. She did not notice that one of the dogs slipped around one of our cars and approached from behind, attacking Charlie.

In trying to separate the dogs, she fell backward and landed on the driveway in a sitting position, immediately feeling severe pain in her lower back. Apparently, the unleashed dog owner was very apologetic, and Colleen expressed her displeasure that his dogs were unleashed. None of that helped her back any. She’s never had a back injury.

After two hours of meds and ice did nothing, I took her to the ER. Between steroids and low bone density, she’s subject to fractures. Fortunately, xrays showed nothing broken. They sent us home with pain meds and rest orders. If she’s not better on Monday, we’ll call her regular doc and see what they want to do from there. We’re praying for the best for complete healing, but cancelled plans for Pismo. Too much pain to consider driving 3 hours or being anywhere but home.

We did get to find out that as long as Colleen is well by then, we’ll get to see Jonathan in Utah September 22-26. That’s when Heritage has their next Parent Weekend, and the timing seems like it would be right for our first visit with him since May. We are very much looking forward to seeing him and trusting all will be well for Colleen for the trip. We covet your prayers.

Jonathan also decided to go out for a part in the Heritage school play and actually got a part! One of the things Heritage is well known for is their performing arts program, and we had hoped he would go for it. We encouraged whenever we could, but he was not biting at all. Apparently, his therapist was able to talk him into going for it.

So, he’ll play some part in “A Christmas Carol” in December. It plays the week of his birthday, so we’re shooting for seeing his play and being with him for his birthday as well. In the mean time, we have Thanksgiving and Christmas up in the air, wondering what we will do with those holidays and whether we will be with or without him.

This week, we attended a parent support group for the first time that is specifically for parents who have kids at a residential treatment center. It was a great group, and we hope to take advantage of it regularly. From what we hear, they’ll really be able to help us work through all these kinds of difficult decisions.

Onward and upward….

The last several weeks have been fairly intense around the Kuzma household. Here’s a couple quick updates and a chuckle for you:

Jonathan seems to be doing pretty well at Heritage School in Provo, Utah. We miss him like crazy! Not that one ever knows what a situation like this will be like, but I really did not expect to miss him so much. At times, it’s deeply emotional. His homesickness settled in about 3 weeks ago or so. Our phone calls and last couple of therapy sessions have been filled with lots of tears and wishes that we could be closer (on his side AND ours) and see each other more often. On the up side, we are trusting this will build a deep appreciation in him for being with family rather than being separated. He’s doing great in school, is off of his main Bipolar medication and seems to be handling it pretty well. He’s lost 25 pounds, likely due to being off the medication. We don’t know what the long-term picture looks like as far as meds. It’s too early to tell.

Colleen had a recurrence of the heart issues 3 weeks ago. (If you’re not familiar with what I’m mentioning here, you can go back to the posts around June 14-21 for more details.) We didn’t tell many people about it because all tests showed nothing had happened heart-wise and there was no increase of fluid around the heart and lungs. There was no change from her echocardiogram done 2 weeks previous to the recurrence. What they did do was take the steroid medication (which she had been slowly weaning off of per doctor’s orders) back up the maximum. They are weaning her off more slowly this time in hopes that the heart issues will recede and she can make her way completely off steroids. Upside is that some blood work last week showed much improvement. Downside is that she is going through some of the side effects of the steroids. Next echo is this Friday.

If you follow my blog or Facebook page, you likely heard of my involvement in the memorial events for Simi Valley Police Officer Nicole Anderson. The Memorial Service was last Tuesday, July 26. It made for a couple of pretty packed weeks, though it was such an honor to be involved. Then, this week, tomorrow in fact, I’ll get to participate in a short memorial for Simi Valley Police Officer Michael Clark, who is the only Office in our history killed in the line of duty on August 4, 1995.

So, for the last couple of days, I’ve taken a chance to get out of town for a short respite. Hanging with a friend down in Temecula. It was quite the trip. I was supposed to come down Sunday afternoon. For long story reasons, I got several miles out and then turned around, with both of us thinking the trip was off. Then, Monday morning, he called and said it was back on.

I got all the way to Pasadena before realizing I had forgotten my wallet! Colleen was gracious enough to meet me halfway. Then, Monday evening, I realize I hadn’t packed some medication I needed. Took care of that Tuesday morning at the pharmacy. THEN, Tuesday afternoon, we go to leave for golf, and I open my trunk to find out…NO golf clubs! Had to rent a set to play with.

After we both started the round pretty sadly, we were able to settle down and had a great time. In the meantime, I’m working through some school work for my Master’s program as well. Trying to keep the reading schedule intact (it’s a bit behind) and assignments turned in on time.

Have spent today reading, getting a haircut (LOVE it nice and short), and more reading. Oh yeah, to top things off, while I’m driving out here Monday afternoon in triple digit heat, my car’s air conditioning quits on me! Yeah, I’ll be waiting till well after sun down to leave for home tonight!

I leave you with a chuckle! Enjoy …. the seniors RV ….