New Meds

Hello gorgeous creatures,

Well, Isaac is on a new med–an anti-psychotic, and boy can we tell. Med switches are hard. Imagine this teeny tiny body suddenly bombarded with powerful chemicals rushing through his blood. Tiny human, massive meds. They have been so careful about getting his Depakote levels just right so that his body was prepared for this new anti-psychotic, slowly easing him into everything.

And yet, he’s on a new med, and boy can we tell.
We have learned not to overreact to the initial drama that accompanies a new med. It doesn’t usually stay this way. His body and mind just aren’t sure what to do with this stuff yet. Of course, we’ve never had a med actually work to stop the psychosis, but we have had some that throw his behavior and control way off kilter, but then he comes back to us after a few days.
So, yeah, keep those fingers crossed.
He was very hyper today when I took all of his siblings to visit. He was fixated on a situation with a boy who had not been particularly nice to him during group therapy today. Apparently Isaac asked him if he liked rock climbing and the boy told him to shut up and mind his own business. Isaac was repeating those words over and over again. We tried to engage him, but he was pretty much in his own world until I pulled out my phone to play some music. Naturally I went straight for Beyonce after yesterday’s success (by the way, NOT ONE of you commented on my beautiful Beyonce photoshop masterpiece yesterday, but I’m pretty sure it’s because it was so amazing that you are speechless–I get it), but he wanted nothing to do with Queen Bey. All he wanted was Michael Jackson’s Thriller. So we watched the whole video, the reaaallllly long one, and then we took some pictures of the four kids, since this was the first time all four of them were together since Isaac went to the hospital:
(Sorry about the weird filter–the light coming in through the window pretty much removed Mads’s face all together without it… and I like for her to have a face.)
It was all smiles and cuteness here, but it quickly deteriorated into kicking and pinching and biting and hair pulling and, well, it was clear that it was time for us to go.
It’s hard to know just how much to hold him responsible for when he’s on a new med. I suspect that the staff at the PPH is struggling with this too. He has a chart where the staff keeps track of his behavior throughout the day. He earns rewards for good behavior and can lose privileges for poor behavior.
But if he can’t control his behavior, can we really hold him responsible for it? Can we take away his dessert and his movie time and the “good” toys and whatever else he’s hoping to earn, if he is truly incapable of earning them? But… can we give him those things if he’s not following any directions and not being safe?
BUT, should he be made to feel guilty for something he has no control over? No. No, no, no, no.
It’s a tricky balance, and one that none of us knows exactly how to manage. But I suspect that they are relaxing the rules for him a little bit today. This evening, at about 8:30 (half an hour after his bedtime) I got a phone call. Isaac’s nurse said that they’d told him that if he could behave really well, he could stay up past bedtime in order to call me. Well, I was delighted, and Isaac and I had a lovely little chat, but I felt the mania bubbling just under Isaac’s surface and I knew as well as the nurse that he had “earned” this late night phone call in the very loosest sense of the word. But I’m glad that they were lenient, because I think we just have to be right now.
I’m also grateful that he’s in the hospital for this. Whether this med turns out to be the magical one or not, it’s something we need to try. And it clearly needs to be tried somewhere where he is safe and under round-the-clock medical care. And hopefully in a few days we’ll have something wonderful to share. But even if we don’t, at least we’re one step closer to finding the one that will work.
Your continued love and prayers are so, so appreciated. xoxoxox

Isaac goes all Beyonce

Dear beautiful humans,

Today I had an afternoon meeting with Isaac’s psychologist. When I arrived at the PPH, on my way to the meeting room, I happened to walk past a room where a therapist and a bunch of kids, including Isaac, were watching Just Dance (a video game with dance instruction to songs) on a big screen. I had to stop and watch. Isaac was singing and dancing his little heart out to Beyonce’s “Single Ladies.”
It. Was. Awesome.
Here’s an actual photo* of Isaac and Beyonce on tour together:

*Not an actual photo
(There they are, folks. My amazing photoshop skills. Behold my masterpiece.)
The meeting with the psychologist went well. Hubby is in Boston today, but was able to join us via speaker phone. We learned that the mood stabilizer med is doing well in Isaac’s system (according to the blood-draw results) and so they are going to move forward with a larger dose and also start him on a new anti-psychotic. This will also take a few days to implement and no one knows if it’s going to work. They want to hold onto him at the PPH for about another week–and that’s if the meds actually work, which they might not, in which case he might stay longer. As usual, it’s all up in the air. Hard to get any definitive timelines in a situation like this, of course. But when he is released from the hospital, he will be sent to “partial hospitalization,” where he will be at a facility for most of the day but sleep at home at night. That facility is, blessedly, much closer to home. We’re all crossing our fingers for this to be a good fit for him.
Unfortunately, when Isaac joined us about halfway through the meeting, it was clear that he was still thinking that he would be going home on Wednesday (which had been a possibility, but we told him from the beginning that it was just a “guess” and it’s up to the doctors). So we had some freaking out, including him kicking me hard enough to bruise my hip. It didn’t really hurt, but one day he will be bigger (which is one of the reasons he needs help now). Anyway, I was glad for the doctor to see it first hand. I know that Isaac loves me and I know he doesn’t even blame me for the fact that he’s going to be in the hospital for a little longer. But he was mad, so he lashed out and kicked me. It’s that impulse-control that is so very difficult!
Well, that was an unfortunate moment, but it didn’t define our visit, which was otherwise quite lovely. We helped Isaac settle down and use his words and talk through his frustration and it turned out to be very positive. In fact, at one point he announced, “I hate being at home. Home is so BORING. We never do anything fun! I guess I just want to stay here, because we have lots of fun here!” I wasn’t sure whether to be delighted or defensive… haha
We can totally dance to Beyonce at home too, bud.
Love you all. Your response to Mads’s clothing drive has been mind-boggling. Thank you, thank you, thank you. You are blessing the real lives of real children–many of whom have never experienced much in the way of kindness. You are the light in the darkness.

A burst of (paper) sunshine


Some of you are just now joining our program already-in-progress. I had several people ask to be added to these emails today. Let me know if you would like the ten or so updates that you’ve missed. If you would like them, I’m delighted to forward them to you. Otherwise, I will not bombard you with them!
The other night, I mentioned Mads’s interest in collecting donations for the PPH kids who come with nothing. There was a huge response to that! And yay, the project was approved, with a few tweaks!
(Note, I’ve removed all the info about this that went out with the original information, because the drive is over, and because it included way more personal info than I would ever put in a blog post, but it was a MASSIVE success! More on that later…)
Okay! On to the updates! I gave a talk in church today and I spoke a bit about Isaac. To those of you who are receiving these emails and also attend my congregation, thank you for everything! We (Hubby, Isaac, and I, along with our other children) feel surrounded by your love. You truly know how to mourn with those who mourn and comfort those who stand in need of comfort.
Then, each child in our tiny-but-mighty Primary (the children’s group at church) wrote a little note to Isaac on yellow triangles, which our outstanding Primary President then turned into a gorgeous card:

When I went to visit him tonight, he was so in love with this card! Isn’t it amazing!? Thank you, Michelle, and everyone who helped with this. He sat and read all the notes and thoroughly enjoyed the little drawings. The nurse even let him hang it up in his room! It’s right next to his bed, where it is sure to bring him hours and hours of happiness and joy! He even asked if we could bring it with him when he leaves the hospital and hang it up next to his bed here at home. Of course!!!
It’s impossible (for me, anyway) to know what, if any, progress Isaac is making. But he was happy tonight. He felt loved, he felt special, he felt remembered. I guess he felt the same way Hubby and I felt at church today, and the same way my daughter feels when people are interested in her clothing drive, and the way I feel every single day when I read your wonderful, loving messages.  We are so, so grateful for each and every one of you. For your prayers, your kindness, your encouraging words. THANK YOU!!!
All our love,
Mama Annie

Twin Swap!


Every day, Isaac has a full schedule at the PPH. He is awakened at 7:00 a.m. and sent to bed at 8:00 p.m. In between, he has a full day of group therapy (multiple times a day), individual therapy, games, meals, social groups, visiting hours, and free time. On Saturdays, families are invited to a session of group therapy. I wasn’t able to attend this morning (Nugget needed me elsewhere), but Mads and Bud went with Hubby.
Today’s group therapy was about expressing yourself through music. Mads reports that Isaac was much more engaged this time around than during last week’s dominoes, because banging on things to make noise (“music”) is super fun. But Isaac missed some important parts of the lesson–things like taking turns, following directions, and not throwing instruments in fits of anger or silliness. Haha. The reports are quite entertaining. (I’m probably not supposed to find it entertaining… but… come on.)
Anyway, as Hubby says, we’re not sure just how much is getting through to Isaac in these lessons. The banging on things to make noise is cool, but the lessons that are supposed to accompany the noise-making are totally missed. All those windmills, doncha know.
When Nugget and I went to visit him tonight, the nurse told me that Isaac had struggled a bunch today and had been taken to an observation room to put some space between him and the other kids (I guess he’s been picking some fights). The observation room lets him be alone, but there are cameras so that they can observe him and make sure he’s being safe. Apparently, that’s when the music therapy really began. Isaac, not knowing he was being observed, put on quite a show! He sang all of the greatest hits from Andrew Lloyd Webber’s “Joseph and the Amazing Technicolor Dreamcoat.” The nurse said that the staff all gathered around his door to listen in amazement. Haha. That’s my boy! He’s all about music therapy–on his own terms!
During our visit, Isaac and Nugget played some games on Nugget’s phone and we listened to some music. Isaac was very impulsive, but not unkind. He kept grabbing Nugget into hugs and snuggles.

​Good times.
At one point, Nugget (who is a year older than Isaac, but they are the same size and they are often confused for each other) proposed the idea that he and Isaac trade places in the PPH. Nugget would stay in Isaac’s place and Isaac could go star in Joseph/Dreamcoat in Nugget’s place (after all, he’d already proven that he knows the music). I’m not sure what Nugget hoped to get out of the exchange, but we did have a good laugh, wondering how long it would take for anyone to notice the switch (and what they’d do about it when they figured it out).
Well, that’s it for me tonight. No news, but none is really expected until Monday-ish. Thanks, as always, for, well, everything. xoxox

Some get no visitors at all

Dearest everyone,

I want to start out by thanking you all for the many messages of love and support I received in response to yesterday’s email (and for the many other message I’ve received over this last week). I feel your love. I feel your light. I so wish I could respond to every one of your notes. I’m just not in a position to do that right now. But please know that I read every single word and they mean the world to me and my family.

Okay, back to Isaac. Bud and I went to visit him this morning. He was a bit off–stimmy (Tourette’s-y?) and distracted and pretty much uninterested in our presence. His disinterest is totally okay with us. Again, our purpose in visiting is just to make sure he knows we love him and we want to see him and we haven’t forgotten about him. We aren’t trying to force anything else.
As we visited, we discussed with Isaac some of the ideas we (the medical team and Hubby and I) have for him after he’s allowed to leave the hospital. The plan that everyone is leaning towards is “day treatment” which allows him to go to a hospital-style therapy and behavior management clinic during the day, but he comes home at night. This is also called “partial hospitalization.” Anyway, I explained all of this to Isaac, because I’ve tried to be as open and honest with him as possible through every step of this process. He wasn’t happy about it, but he couldn’t really pin down why (or couldn’t verbalize it, anyway). Our visit ended with him telling us that it was probably time for us to go, “and, by the way, I do NOT WANT TO GO TO DAY TREATMENT!!!”
As we were leaving, he ran after us to give us hugs and loves (after he’d already said a definitive goodbye, silly boy). The nurse in the hallway told him that it was good that he was being so sweet. “Lots of the kids here don’t get any visitors at all, so you need to be grateful for the people who come to visit you!” Well, I will come to visit Isaac whether he’s nice to me or not, but my heart broke a little bit to know that for some children, visitors are rare.
When I reported that conversation to Mads later today, she was very sad. Heartbroken that some children might feel like they’ve just been dumped there and forgotten. The children in this unit are between the ages of 5 and 12. So when she went to visit Isaac later tonight with Hubby and Bud, she asked the folks at the front desk what sorts of service she could provide. She is in her Mia Maids (church youth group) presidency and wondered if there was anything the youth could do to comfort the children whose families aren’t available for (or interested in) visiting. She learned that due to privacy situationsconcerns she and her friends can’t actually visit or play with other children. But, she also learned, many of these children arrive as foster kids or Child Services interventions or other unfortunate home situations. They arrive with no clothing of their own, let alone comfort items like blankies or plushies. And then no one ever visits to bring those items. The hospital then does their best to scrounge up scrubs–usually ill-fitting and awkward–so that at least they have something to put on their body.
But they are never comfortable. They are never comforted. They never fit in. They never have anything that is theirs.
So they told Mads that if she was interested in collecting clothing items and soft, safe toys like stuffed animals, she could submit a proposal for approval. Well, if you’ve ever met Mads, you know that within the hour she’d written up a formal proposal that she will submit tomorrow morning when she goes back to visit Isaac. Upon the PPH’s approval, I will pass along the information in one of my nightly updates (on her behalf) just in case any of you (especially you locals) are interested in donating any items. (This past week, I sent 8 full garbage bags of clothes that my children have outgrown to Deseret Industries. I so wish I had known that they might be better used elsewhere!)
Okay, well, so far, this Isaac update hasn’t really been about Isaac much. So let me finish by saying that after a rough morning and afternoon, he did manage to pull it together when Hubby, Mads, and Bud visited him tonight. They played Go Fish and Simon Says and rough housed a bunch and Isaac seemed very happy with all of that. There’s really no news on his medical situation–there was a blood draw yesterday that was supposed to give us some answers about how he was doing on one of the medications (they have to get the levels correct in his blood before they can move forward with other medications), but the lab had not gotten back to them yet. And now it’s the weekend, so chances are that we won’t hear anything until Monday. Sometimes that’s just how the cookie crumbles. In the meantime, we’ll just keep crossing our fingers!
Love to all,
Mama Annie

Windmills of the Mind

We begin tonight’s update with this clip from The Muppet Show. Go on, take a moment to watch it. You won’t be sorry.

This, my friends, is the soundtrack of Isaac‘s life. Not just because Isaac has watched this many, many times a day, every single day, for the last five years. (This seems like a good moment to share a favorite meme of mine. That’s right, folks. You get youtube videos and memes tonight. This email is quickly becoming an exciting multi-media event!)

Okay, so, I was saying. This song isn’t just the soundtrack to Isaac‘s life because he is obsessed with it and watches it constantly, but also because it is a fantastic description of Isaacchimself. Oh, the windmills of his mind! Even if he seems calm on the outside, this is what is happening on the inside.
Today in our meeting with Isaac‘s psychologist and psychiatrist, I learned a fun new phrase: Schizoaffective Disorder​. It is Isaac‘s latest and greatest current official diagnosis (on top of autism, anxiety disorders, and OCD, of course). Schizoaffective Disorder is not quite schizophrenia and it’s not quite bipolar disorder, but it looks like a combination of both. The more I’m learning about it, the more I think YES!!! WE ARE FINALLY ONTO SOMETHING THAT FEELS LIKE A REAL FIT!!! (For the curious among you, you can find out more here:
Also added to his list of diagnoses is a word I knew but had misconceptions about and had never really considered (even though one of Isaac‘s previous psychiatrists briefly mentioned it before): Tourette’s. Isaac‘s psychologist brought it up today and described what we have seen Isaac do millions of times, but we’d always chalked it up to autistic stimming. As we continued to talk about other aspects of Tourette’s, we heard our boy described over and over again. Mind. Blown.
Do the labels matter? Maybe, maybe not. I’ve had friends and loved ones over the years who don’t want to hear any labels applied to their children. That is their right and they have their reasons. However, what we have found, ever since Isaac was a tiny baby carrying a PDD-NOS diagnosis (which was upgraded to Classic Autism as soon as he was old enough to carry that hefty label) is that LABELS OPEN DOORS. Doors to proper therapy, doors to insurance coverage, doors to appropriate, individualized education, doors to compassion and understanding, etc.
Doors that we need flung open.
But. What do these labels change? Well, they don’t change anything about his personality. He is the same person today that he was yesterday, pre-labels. They also, unfortunately, don’t help with treatment plans. You see, the way you treat Schizoaffective Disorder and Tourette’s is, in fact, the same way you treat schizophrenia and psychosis. Yup, all the same stuff we’ve been doing, and all the same stuff that hasn’t worked.
But if nothing else, the labels give us a glimpse into the windmills of his mind. Holy cow, these are some serious windmills!
We’re continuing to hold out hope for this new medicinal treatment that they are still in the process of implementing. It is too soon to have any idea if it’s going to work, but it seems in line with all of these new diagnoses and continues to look like a possible winner.
Other highlights of our visit with the psychologist today were my awesome moments of personal eloquence. The topic was that after Isaac is released from the hospital, he will receive therapy. This therapy will not only help him, but it will help us be better parents who can play therapist in between actual therapy visits. He then mapped out some of the things that we will learn as we work with therapists. You know, EXACTLY THE THINGS I HAVE BEEN DOING.
What I tried to say: “This child has been in one type of therapy or another since he was 14 months old. I have sat in on literally hundreds of therapy sessions. I have been trained by dozens of therapists over the years. These days, when we’re at home, Isaac receives two hours of therapy every single weekday. I meet with his psychiatrist every two weeks. I meet with his RDI/ABA team every two weeks. I’m already doing everything on your sheet of paper. It is clearly not enough. I cannot sanitize and organize our lives like the hospital does with its danger-free rooms and its strict hourly schedule. Real life is messy! I have three other children who have their own big needs. My husband travels for a living and is gone a lot because at least one of us needs to be gainfully employed so we can pay for all this freaking therapy. I cannot do more than I’m already doing without sacrificing things and people that are equally important! There is nothing left that is sacrifice-able!”
What I said: “I’m so tired.” And then I broke down crying.
Yeah, that didn’t entirely convey what I was hoping to convey…
And, unfortunately, I think those words led the psychologist to believe that maybe I was looking into residential therapy for Isaac (after his release from the PPH–one of many possible treatment plans we’ve discussed) because I need a break from being Isaac‘s mom. Oh golly. Nothing could be further from the truth.
Well, hopefully I can help him see that we are all genuinely on the same team. I trust the doctors to be on Team Isaac. Hopefully they can trust that I am too, despite my total lack of verbal prowess.
We are so grateful to you all for your patience, insights, love notes, prayers, and support. xoxox

One week in

Well, it’s another exciting day in Isaac-land. Today started off with a weird conversation with his new psychiatrist. I say weird because it started out good, but soon she started saying things based on her observations that I completely disagreed with. That’s a new development. So far everything any of the medical professionals have said have felt spot-on. This was really unnerving. I tried to express my disagreement, but she told me I was misunderstanding her, and I probably was. We will have the chance to meet with her in person tomorrow and I’m optimistic that we can get ourselves onto the same page. Between the two of us, she is definitely the mental health expert. I am the Isaac expert, though. Then again, everything I’ve tried has failed, so maybe it would be good to give her ideas a fair shake.

Later this morning, Mads and I went to visit Isaac. We had been told that he was doing a lot better today than yesterday. Alas, that changed pretty much upon our arrival. He was eating his lunch with other kids and staff when we arrived, but across the hall from the room he was eating in was a room where a child was in “time out.” The child was screaming and thrashing around the room. We couldn’t see him but we could hear him. Isaac became obsessed with the situation across the hall and found it all completely hilarious. All while laughing, he kept asking questions about who was in that room and why they were there. He was told by a nurse over and over again to worry about himself and let the child in the time out room have their privacy. Isaac just couldn’t follow that direction and therefore got into trouble. He was excused to go to his room to finish his lunch with us in tow.
But the silly hysteria couldn’t be curbed. He couldn’t stop obsessing over what was happening in the time out room. He started to lose control all while laughing and shrieking. At some point, he spilled some of his milk (on accident, I think) and that too was so hilarious that he started intentionally dumping it all over himself and the chair and the floor. Screaming and laughing all the way. I pulled out a clean outfit for him to change into and a towel for him to clean the milk mess up, but he was too far gone to follow any of my directions at all.
A nurse (but not the same nurse from earlier) poked her head in to find out what the noise was and found the mess and the excessive silliness. That’s when bad turned to worse, because the well-meaning nurse threatened, “Isaac, do you need to go time out?” Oops, wrong thing to say. “YEESSSSSSS!!!!!!” He screamed. He was SO delighted! He really, really hoped she would put him into time out. He was bouncing off the walls and screaming with glee and was totally… gone. The nurse carefully asked me and Mads how long we were planning to visit. I told her that we could leave at any time, and she agreed that it would be best for us to go.
So… we left. When I checked out of the unit (I have to check in and check out–writing down our names and what time we arrive and what time we leave), we realized we had only been there for a grand total of 13 minutes.
As my wise Mads pointed out, the reason for our visits is not to have a “nice visit” so much as to make sure he knows we love him and we aren’t forgetting about him. I like to think all of that was conveyed, even through the milk mess!
Hubby went back to visit tonight after work and though Isaac reported several other unfortunate instances throughout the day, he was a lot more chill. They played Old Maid for a little while and had fun. Isaac struggled a bit with impulse control (there were cookies involved…) but was otherwise a lot better.
Again, I want his doctors and nurses to see the full range of Isaac‘s issues. And while it is certainly whiplash-inducing, I’m sure it’s also really helpful for them to see it all.
Today marks one week since he arrived, unconscious, at the PPH. Tonight likely marks the half-way point in his stay there. There have certainly been a lot of good moments since he arrived, but I’m not sure what real progress has been made. It’s just so hard to tell. He’s no longer running away, because he can’t. He’s no longer ripping things off the wall, because he can’t. So… is it progress? I guess that’s the big question for everyone, not just me. I’m not sure how such progress is even measured.
Tomorrow we’ll meet with the psychologist and psychiatrist. I’m praying for them to really see him and really see his troubles. I guess I’m praying for open-mindedness on my part too. This little boy needs and deserves all of us to be working together on his behalf.
Till then, all our love and gratitude for you and your ongoing love, kindness, interest, and prayers. xoxox

Words and Power

Today I went to visit Isaac with my parents. When we entered the unit, a nurse let me know that Isaac was having a really rough day. Sure enough, when we got to his room, we found him in a bit of a sour mood. His bedding had been flung everywhere, which I actually found kind of adorable. His possessions are extremely meager there at the hospital, so he’d pretty much flung everything he owns. He wasn’t crying or screaming, though. At least not when I was there, and not that anyone reported to me. So I guess “rough day” is relative.

When we asked Isaac about his day, he agreed that it had been rough. He hadn’t been following directions and he’d broken a number of rules. At one point (he told us with delight…) when he was in group therapy, he screamed, “I’m going to kill myself!” They immediately removed him from the room and took away all of his points and dropped him to a lower behavior level (meaning he has less privileges).
He found it hilarious.
Words can be powerful, and Isaac seems overjoyed with his newfound power.
Yeah… that newfound power is going to be super fun for the PPH staff…
The truth is, I think it’s very important for the folks at the PPH to see him at his worst. I’m glad that he’s been doing relatively well over the last few days, but I need them to see him when he’s not doing well. I need them to know what that looks and feels like. If he’s always hiding that part, how will he get well?
My cute parents had brought Isaac some play-doh (they can bring it in to play with as long as we take it with us when we go). My mom was clever with finding ways to engage his interest and attention (no easy feat) and my dad was hilarious in his play-doh creations. Isaac laughed and played and chatted (not necessarily about what we were trying to chat about, but he was chatty nonetheless). So despite Isaac‘s “bad day,” I felt like the visit went well.
Hubby went to visit Isaac tonight after work. He found that even with our positive visit from earlier, the day had not improved. Hubby’s visit was supposed to include another family group therapy, but everyone agreed that Isaac was in no condition to attend, so they just went back to Isaac‘s room to hang out. Once again, despite Isaac‘s “bad day,” they had a decent visit.
Well, I hope that Isaac has a better day tomorrow. But if not, I’m glad that he is surrounded by good people in a safe place where his troubles can be observed and hopefully resolved.
All righty, folks. That’s all for today. Thanks, as always, for…well…everything. xoxox

Progress, maybe

Dear wonderful people,

Hubby and I met with Isaac‘s psychologist today at the hospital. We had a good talk about what is happening there at the hospital and what to expect time wise. The tentative timeline right now is that Isaac will come home next Wednesday, Aug. 2. That would bring his stay to a total of 2 weeks. Of course, that is all just a guess. But it gives us some idea of what to expect. Before today, we had no idea whatsoever!

The criteria for coming home has less to do with getting “well” than it has to do with being “safe.” Once he is no longer dangerous to himself or others, he will be ready to leave, even though we obviously have a very long road ahead of us.

Among the many interesting things we discussed with the psychologist, we talked about whether or not Isaac even wants to get well from his psychosis. The hallucinations he sees and hears are very mean to him. They bully him and force him to do awful things and yell really bad words at him, etc. He spends all day, every day fighting with them.

And yet… he misses them when they’re gone.

At the end of our meeting, Isaac was brought in to join us. As if on cue, the first thing he did was talk about how much he misses Gettany (she is an unreal person who lives in a window in our house and she is terribly mean. She doesn’t leave our house, so she’s not with him when he’s not at home). He drew a picture of her for the psychologist and said, “Sometimes Gettany is mean to me, but she loves me very much! I miss her!”

We also asked him about who (of his hallucinations) is there in the hospital with him. Herron, who I mentioned yesterday, is there. That’s not a a big surprise. But Isaac explained that there are people everywhere he looks. There were a whole ton of them in the little office we met in. When the doctor asked him if he wants to stop seeing and hearing all these unreal people, Isaac said that he is sick of Herron because he’s been following him around for so long, so he’d like to get rid of Herron. But he would actually like some of the others to stick around so he can get to know them a little better.


By the way, the names Herron and Gettany are weird, for sure. But, according to Isaac, these are the names they introduce themselves with. They also spell them for him so he can get them right. Almost all of the names of his hallucinations are weird like this. (It actually freaks us out a little more when they’re named normal things like Joseph or Elizabeth.) (For the record, there is a Joseph and an Elizabeth. Joseph is the toilet paper holder in the hallway bathroom and Elizabeth is a window in the front room.) (Both of them are horrible people. Except that neither of them are actually people…)

I went back later this evening to see Isaac–I decided that the first appointment didn’t really count as a visit, since it was very brief and done in the psychologist’s office. Isaac had had a bad day since I’d last seen him. He’d lost a lot of points for not following directions and he was really frustrated with himself and the people around him. He was also sad, because some of the kids he’s gotten to know there at the PPH are going home tomorrow. It had been a rough day.

We sat on his bed and played a game of Spot It. He beat me solidly (he always does). I started to shuffle the cards for a rematch and he told me that he didn’t want to play again and, in fact, could I please just go away. He was very calm and polite and I told him that yes, I would go away. He gave me a great big hug goodbye and I left. It was all very strange. But I was grateful that he was polite and also that he verbalized what he wanted.

So, maybe we’re making progress. Maybe we’re not. Maybe a little of both. Who knows? But even with his rough day, he was calm and verbal. That’s progress for sure. And we’ll celebrate any progress we can!



As the shock subsides

It was a strange Sunday morning. I am accustomed to Sunday mornings being full of chaos and drama as we prepare for church, and then more chaos and drama as we attend church. But today it was eerily quiet. Mads gave a talk, so she sat on the stand. Nugget passed the sacrament with the rest of the deacons. Bud was at the door (I should ask him what they call that–when you sit at the door to hand out programs, let the deacons in and out during the sacrament, and open the door for those coming and going for whatever reason… “Door Boy” doesn’t sound sufficiently respectable… haha).

And, of course, Isaac was elsewhere.

Hubby and I walked in and picked out a short row (we usually need a long row for our clan) and we just…sat together. And listened. And while the messages today were lovely (especially Mads’s!), sitting quietly was very…strange.

We are surrounded by lovely people at church. Lovely, loving people. So many embraces and expressions of love for us and for our little guy. Isaac has wormed his way into the hearts of so many.

Let’s just say that I made the right choice not to wear any eye makeup today.

I was able to take many messages of love and good wishes to Isaac when we went to visit him after church. Hubby, Mads, and Nugget came with me. (Bud had another commitment today.) Isaac wanted a complete rundown of who was at church today (the summer months bring a pretty sparse attendance in our congregation). He asked about lots of people and was very pleased with the messages we passed along. He’s grateful that he hasn’t been forgotten about. He’s delighted and maybe a little astonished that people are interested in him and his health.

We played and laughed and had a great time during our visit with him. A nurse heard screaming and came in to check on Isaac and found that our noises were all silly and happy. The kids stole my phone and started taking a bunch of selfies. Isaac ran out into the hallway to find his favorite nurse so he could show the pictures to her. I’m grateful for the relationships he has with his siblings, but I’m also grateful for the relationships he’s developing with the nurses and staff at the PPH. The shock of being there and not being able to come home seems to have worn off. I like to think this is an important step in the healing process. He can shift all the energy he used in fighting his situation to working on getting better.

I asked him about “Herron” (his primary hallucination–a non-existent “friend” who bullies him constantly and follows him everywhere). Herron has been a part of our lives for 3 years now. He used to come and go, but for the last year or so, Herron is “with” Isaac 100% of the time. I’ve been trying to understand if Herron is there with Isaac in the hospital. Isaac seems very hesitant to talk about him. I’m guessing that yes, Herron is there, but Isaac doesn’t want to tell me because he’s trying to be all well, and he knows that if Herron is still around, I will know he’s not well yet.

Sorry, kiddo. I already know. You’re not well. But I’m delighted with all the good behavior and the positive mood!

Hubby went back to visit Isaac again this evening and found him still in good spirits–happy and funny. Hubby is visiting him as much as possible right now because pretty soon the realities of work will come flooding back and he won’t be able to see him very often. I love that they’re both eager to get all the quality time together that they possibly can.

Tomorrow morning is our big meeting with the psychologist, psychiatrist, and social worker. Hubby and I have been looking forward to this meeting since Isaac‘s arrival at the PPH. Hopefully tomorrow is when we’ll get some idea of how long we should expect Isaac to be there and a full understanding of his treatment plan. Hopefully we can begin to understand what the criteria for coming home is–and then what happens next.

We will keep you posted as we learn more. Thanks, as always, for your love, time, prayers, kindness, and everything else. Thanks for being our village.