Jackson's Journey

Look who's 18!

noreply@blogger.com (Anonymous) — Sat, 11 Jun 2016 17:43:00 +0000

June 1, 1998: Jackson came into the world crying. And he couldn't stop. A doctor privately told the new daddy that his son probably wouldn't make it through the night.

June 1, 2016: Jackson started the day bursting with smiles. "Happy birthday!" he exclaimed as his mom walked into the room. He just couldn't wait for it to be said.

"Jackson's 18?" asked little Sara. "Yes," 9-year-old Christian replied, "he's a premature adult." I haven't heard that phrase before, but it's actually a good description.

In the weeks prior when Angy would ask Jackson what he wanted to do on his birthday, he always said "hotel." What he likes best about staying at a hotel are the little toiletries in the bathroom. It seemed an expensive way to get "free" travel-size toiletries, so she hoped he would change his mind.

Angy asked again on the big day what he wanted to do. "Bath & Body Works." (Good call, buddy.) They spent an hour in that little store while Jackson took his time examining all the products and happily dancing to the '90s music being played.

He finally settled on $60 worth of scented products in the usual quantity of two each. When Christian saw the purchases later, he noticed that Jackson had selected two men's fragrances, which he normally doesn't do. "Now," Christian proclaimed, "you're a true man."

Jackson brought a few of his treasures to our Sunday gathering. Do you see the little bottle without a matching pair? Angy bought that one for herself, but Jackson confiscated it.

Since he doesn't like cake, we put together a bowl of birthday candy filled with two of his favorites—strawberry gummies and butterfly gummies. I also made Jackson a card and put some cash in it so he could do more shopping. I love that he took time to study his card and reread it.

It said in part: "Through all of your ages and stages, you've been a
beautiful, bright light in our family—a marvelous blessing from God."

My mom, Jackson's beloved Mema, always said she wanted to live long enough to see him turn 18. She missed it by only 6 weeks.

When Angy would bring Jackson to visit her in the hospital, she had to assure him that he wasn't going to have anything done. Naturally, he doesn't like hospitals (except for the gift shops, that is). And he didn't like seeing the hospital bed in Mema's living room when she was under hospice care.

During the 10 weeks she was sick, Jackson continued his usual mantra of "Mema's house" because he always wanted to go there. When Angy told him about Mema's passing, he didn't show any reaction. But when she asked a few days later if he wanted to go to Mema's house, for the first time in his life, Jackson said "no."

With Mema in November

Less than a week after his birthday was his annual checkup with the cardiologist. We were apprehensive about it, given that each year Jackson gets heavier and the time for his next medical procedure gets closer. Every few years, he has to have something done, and it's been two years since his stents were dilated.

A lot of prayers went up from Angy, Darrell, and me. Here's how our gracious, merciful God answered. (You're just going to have to forgive me for the excessive use of exclamation marks.)

Jackson's stents still look great, so no surgery this year!
Although he's always had an enlarged heart and high blood pressure, which can enlarge and harden the heart even more, his heart has actually gotten smaller!
The cardiologist said that when he watched the echogram, had he not known about Jackson's high blood pressure and aortic stenosis, he would have thought he was looking at a normal heart!
Instead of Jackson aging out of the fantastic Texas Children's Hospital now that he's 18, he'll be in a new program for adults with special needs and receive medical care through Texas Children's for the rest of his life!

Wow, Lord. Just wow.

Now to Him who is able to do far more abundantly beyond all that we ask or think, according to the power that works within us, to Him be the glory in the church and in Christ Jesus to all generations forever and ever. Amen (Ephesians 3:20–21).

And that's not all. Jackson generally hates going to the doctor and gets majorly distressed when his blood pressure is taken, but this visit was actually joyful!

When the nurse rolled the blood pressure machine into the room, Jackson started rocking and singing, then pointed to the machine and said "blood pressure." The whole time on the exam table while she took his pressure in all four limbs, his big smile never faded and he kept on singing. Angy asked if he was "loving life" to which he replied "YEAH!"

Wow again, Lord.

Afterward, Angy took him to Walmart to spend some of his birthday money. As he bounded across the parking lot back to the car with a bag of Axe body spray and a huge smile, she remarked that it was a good day. Jackson heartily agreed, "GOOD DAY!"

This is the day which the Lord has made; Let us rejoice and be glad in it (Psalm 118:24).

Jackson has had quite a journey so far. And I'm so blessed to have been a part of it. My hope is to live at least long enough to see him turn 40. But if I miss it by 6 weeks, well, that would be close enough.

A Saturday with my boy

noreply@blogger.com (Anonymous) — Mon, 24 Aug 2015 13:04:00 +0000

Jackson was so excited about coming over on Saturday that Angy had a hard time getting him to bed Friday night. And why wouldn't he be excited? Jackson knew that pancakes, Axe body spray, and foot rubs were in store.

That hair, those lips!

Seated in one of the big booths in the middle of Denny's, the day was off to a good start. Again, we had a lovely waitress who paid special attention to Jackson. No matter that she got our order wrong and was slow to refill my cup. Her attitude toward my grandson is what garnered her a 30% tip.

Jackson had his usual pancakes and orange soda. I had my usual pancakes, bacon, and coffee. Although I considered getting a waffle instead, when I asked Jackson if I should, he shook his head.

Here's how much of the rest of our breakfast conversation went:

"Are your pancakes good?"
"Yeah!"
"After breakfast, we'll go to Walmart."
"Yeah!"
"And remember, you're getting only two cans of Axe."
"Three."
"No, two."
<Solemn stare>
"And then we'll go to my house."
<Big smile>
"Yeah! Nana's house."
<Long pause>
"Are you excited about football season?"
"Yeah!"
"Are you gonna watch the Texans play tonight?"
"Yeah!"
<Long pause>
"I love you, Jack."
"Yeah!"
"I'm so glad we get to spend the day together."
"Yeah!"

You've gotta love the boy's enthusiasm.

When the only thing left on my plate was the excess syrup, I wiped my hands on the condensation from my water glass, rubbed my hands together, and dried them with my napkin. Jackson watched closely. So I explained what is probably the redneck way to clean your hands after a meal. He then did it like a pro and, judging by his expression, thought it was pretty cool. How could I have missed teaching him this valuable lesson before now?

At Walmart, Jackson leads; I follow. He went straight for the deodorant aisle and selected two twin packs of Axe. "Two," he said. Good try, buddy.

I pointed out that there were actually four cans in two twin packs and specified that he could get either one twin pack or two individual cans. (He's already got dozens of cans of his current obsession.) Several minutes of tough negotiations followed.

Jackson finally walked away with two cans. And I strutted behind with the sound of Tom Petty's voice in my head. I will stand. My. Ground ... And I won't. Back. Down. (You know that's how he sings it, right?)

Like a man on a mission, Jackson plowed ahead to a display of travel-sized toiletries in the main aisle. Immediately zeroing in on a particular bin of assorted items, he shoved his hands in and pulled out two small cans of Axe from beneath the pile. How'd he know they were in there? It's like he's got a sixth sense about smelly stuff.

"Alright, you can get those," I sighed, thinking that at least they were just a buck apiece. Turns out they were $2 each. When I realized that Jackson ended up with the equivalent of three cans, Tom Petty stopped singing. All I heard was a "still small voice" (as King James put it). Pride goeth before destruction, and a haughty spirit before a fall.

As we drove to my house, Jackson reached over and clasped my hand, intertwining our fingers. I love it when he does that. And it's a good thing I can drive just fine with one hand because there's no way I'm letting go of his.

Settled in front of my big new monitor with his Axe and an orange soda, Jackson played video games, listened to music, and checked out the full range of scents available for his next purchase of Axe. But most of the time, he played with airplane flight simulators. For years Jackson has been studying control panels and practicing to be a pilot. I have no doubt that if you put that boy in a cockpit, he'd know exactly what to do.

Jackson's a fan of repetition, and he usually had "Thinkin' Things" song loops playing in the background. But I liked it better when he'd switch to Animusic – Cathedral Pictures.

I sat beside him most of the day, doing things like reading, playing on my phone, and filing my nails. That was in between the many times that Jackson would throw his leg in my lap, point to his socked foot, and hand me a can of Axe so I would massage his foot with it.

Since I never take Jackson home anymore (as explained in the second half of my June 2012 post), Darrell came by to get him after work. Angy said that when Jackson got home, he sought her out to tell her about his day.

What did he say? Nothing. Just waved his hands excitedly, made happy noises, and grinned like he was about to burst.

I know exactly what you mean, buddy. I had a great time too.

The burning of the candles

noreply@blogger.com (Anonymous) — Sun, 07 Jun 2015 22:08:00 +0000

I've always longed to know what Jackson is thinking. To hear him express his thoughts and feelings with words. But at least he can use a few words, either spoken or typed, to let us know what he wants. I'm thankful for that.

Since pictures can speak volumes, I'm taking the liberty of projecting what could have been Jackson's thoughts during the protracted process of blowing out candles on his 17th birthday.

Don't like cake, but I'm lovin' these candles.

The flames are simply mesmerizing.

I hear what you're saying ...

You too ... so just to make y'all happy ...

There ... the 1 is done!

Now I'm gonna think about the 7 awhile ...

Alrighty, I'm goin' back in ...

Oh yeah, I'll take that applause!

Not shown during the burning of the candles: Jackson reading for a second time the card I made him—all 90-something words of the message! (He's always been a good reader.) That boy really knows how to make a good thing last.

For gifts, Jackson got various fragrant products and money to buy more. He had a fun time shopping at his favorite places—Target, Walmart, and Bath & Body Works. Every time Jackson got his hands full of lotions and other fragrant items, he would drop them in the basket and exclaim, "Happy birthday!"

Keep enjoying your life, Jackie boy. Take your time to make the good times last.

Keeping things interesting

noreply@blogger.com (Anonymous) — Sun, 28 Dec 2014 03:49:00 +0000

Finding gifts for Jackson isn't easy, but it sure is interesting.

Of the Christmas gifts he received from me and his poppy, Twisted Peppermint body lotion was Jackson's favorite. I'm just glad I was able to come up with some other things this year he would like that weren't from Bath & Body Works or the gift card rack (although he did get the requisite Bath & Body Works gift card).

To accommodate some of Jackson's other obsessions, we gave him a foot massager and a massage ball, as well as a pedicure kit so he doesn't have to wait for a visit to my house to have the full-blown treatment.

Getting a hand massage with his new massage ball

For his room, we gave Jackson fabric posters of his favorite rock bands—Linkin Park and Rage Against the Machine—plus an Uncle Milton Rainbow In My Room Nightlight Projector. (Thank God for Amazon, or I'd have to visit several different types of stores to shop for Jackson.)

It was such a joy watching him open gifts. But when he opened one box and saw just the tissue paper, he set it aside, then looked toward the pile for his next gift. I'm sure that one was a disappointment until I showed him what was beneath the paper.

Sitting on Mema's lap Christmas Day
(Don't try this at home)

Two weeks before Christmas, Jackson spent the night. First on the agenda was the Christmas concert given by Symphony North of Houston. Between some of the songs, Jackson would turn to me and gleefully exclaim, "Hi!" He was obviously enjoying the performance. But when I asked during intermission if he wanted to wait and hear more music or go ahead and leave, he replied, "Walmart."

He must have been paying attention to my phone conversation in the car earlier when I mentioned going to Walmart after the concert so he could pick out some snacks. It was probably at the forefront of his mind the whole time.

When we entered the store, Jackson made a beeline for the toiletries. I tried to talk him out of getting two deodorants, especially since he had two in the car, but we both knew I would cave.

Jackson then selected cheese and crackers, macaroni and cheese, and candy. I suggested some breakfast foods for the morning, but he didn't want any. I wonder ... did he think if none of his breakfast foods were in my kitchen that I'd take him out for pancakes? That's exactly what happened, so maybe it was by design.

He was happy to be at Denny's. So was I. We had good pancakes and a great waitress. I appreciated that she took note of Jackson's name as I spoke to him and that she called him by name when she returned to our table. Then as we were leaving, she called out, "Bye, Jackson!" I was compelled to turn back, double her tip, and thank her for being kind to my grandson.

I guess some people ignore Jackson because they don't know how to interact with him. But really, all they need to do is simply acknowledge him. Just talk to him like they would any other kid. Even if he doesn't respond in some way, that doesn't mean he doesn't appreciate it. And you can bet I do, even if I don't say so.

Ready for a shave

After breakfast, spa day began. I gave Jackson a mani-pedi, hand and foot massages, and for my first time, a shave. (His 'stache remains, but that scraggly goatee had to go!) We brushed his teeth, combed his hair, and put some of that deodorant where it was meant to be.

Angy told me the next day that Jackson must have had a good time because he kept talking about me. "What was he saying?" I asked. "Nana," she replied. Awww ... to me anyway, that says a lot.

Of surgery and sovereignty, part 2

noreply@blogger.com (Anonymous) — Wed, 17 Sep 2014 02:48:00 +0000

Jackson was anxious the night before his cath lab and wouldn't go to bed until around 2:00 a.m. Angy was so nervous about him sneaking food or drink—rendering him unable to have anesthesia and forcing his surgery to be rescheduled yet again—that she barely slept even after Jackson went to bed.

Drifting into a light sleep, she was awoken by the sound of paper rustling in his room down the hall. Angy flew out of bed in a panic that he had smuggled food from the kitchen. She was relieved to find Jackson sitting up in bed with a bag of his body lotions. Maybe he was smelling the lotions to soothe himself.

When I picked them up in the early morning, Angy had slept only about 2 hours. Even so, she had to be my copilot and help me navigate the beaucoup lane changes on the already-crowded Houston freeways. Everything went like clockwork after that, and it wasn't long before we were called out of the waiting room. As soon as Jackson saw the bed, he shook his head and sat in one of the chairs beside it.

After the various members of the medical team came by to talk to Angy, it was time to prepare Jackson for the cath lab. They gave him an oral sedative so he could handle them doing the IVs and other pre-op stuff. When we noticed the sedative taking effect, Angy and I got Jackson in the bed, although not positioned correctly. He was so relaxed by then that he couldn't move himself, and he was too much dead weight for us to handle. It took 2 people on the count of 3 to move our big doll using the "lift pad" beneath him.

We kissed Jackson before they wheeled him away. Then we sat on the chairs next to the empty spot where his bed had been and prayed over every aspect of the procedure and every person involved. It's so comforting to know that Almighty God is sovereign, watching over all, and having His way in everything. We rested in the assurance that Jackson was in the best Hands.

Next was a tasty breakfast at the Bertner Avenue Cafe in the basement. That's right, I said tasty. It's one perk anyway that a visit to the hospital offers.

We spent the next 4 hours talking, able to enjoy our time together despite the circumstances. All the while, we kept in the back of our minds what our sweet boy was going through and kept sending up little prayers.

Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus (Phil. 4:6–7).

Angy got regular update calls from David, one of the best nurses we've met. During the first call, he told Angy how he had been present at every one of Jackson's surgeries in the past and could recall details about them. He was reassuring, kind, amusing, and delightful. God bless you, David, and other nurses like you. What a difference you make.

Dr. Qureshi met with us afterward and delivered the great news that everything went as well as it could have. Jackson's arteries had substantial narrowing, and the blood pressure in his lower extremities was significantly higher than in his upper extremities. After dilating Jackson's stents, the difference went from 70 points to 40, far from ideal but a marked improvement. Hopefully, the surgery will leave him feeling better and more energetic.

But first he had to get through recovery, which is always a rough time for Jackson. We had asked the medical team to remove Jackson's breathing tube the instant he regained consciousness so he wouldn't freak out. All the tubes and paraphernalia that have to remain are bothersome enough, especially for a boy who can't even tolerate a band-aid. Adding to Jackson's distress was having to lie flat all afternoon, except he occasionally jerked upright to throw up from the anesthesia.

Because Jackson has a severe case of complex sleep apnea—a combination of central (brain-related) and obstructive (body-related) apnea—the anesthesiologist was perhaps overly cautious and had Jackson stay in the Pediatric Intensive Care Unit (PICU) overnight. If that happens again, I think we might argue against it. Sleeping in PICU is impossible, so Jackson never wore a sleep mask anyway. He definitely would have gotten more rest and been less stressed in a private room.

The stream of visits from hospital personnel is a steady flow in PICU. Every few minutes it seemed, someone would step in to introduce themselves, ask questions about Jackson, and often poke, prod, or check something. Several times when someone came to his bedside, Jackson dismissed them abruptly by saying "Bye!" in a commanding voice. One person even got a "Bye-bye!" the second she walked in the door. Jackson's words aren't always clear, but those sure were, especially since they were accompanied with a dismissive wave of his hand.

Jackson did, however, welcome a visit by a young, pretty nurse. He said "Hi" in his sweet, friendly voice, then pointed out his hair and his teeth for her to notice. She told him how handsome he was. Jackson was beaming the whole time she was there. The other bright spot in the afternoon came when Nurse David stopped by to say hello and spread a little cheer.

In the evening, Jackson got a roommate. Unfortunately, it was a post-op baby whose mother visited just briefly before retiring to the waiting room to sleep in one of the recliners. From about 10:30 that night until 8:30 the next morning, the poor little fella lay there by himself, crying off and on something pitiful.

Jackson was never alone for a second. Angy and I took turns staying with him and trying to get a little sleep in the waiting room. She tried first but couldn't get to sleep, so she came back to relieve me about 1:00 a.m. Two recliners down from the baby's snoring mother, I crashed hard and quick. Even though I'd had only 5 hours of sleep the night before, I woke up feeling rested after just an hour and a half.

So I told Angy to go try again, and she was finally able to sleep nearly 3 hours. Sitting in the uncomfortable chair in Jackson's freezing room, I was soon wishing that I could doze off. But it was merely a pipe dream. If the baby wasn't crying, someone was popping in—a nurse to take Jackson's temperature, a cleaning lady to empty the trash, and so on.

In between the crying and the constant interruptions, Jackson's monitor was blasting alarms. A nurse would come press a button on the monitor and occasionally adjust the electrodes stuck on his chest or the monitor taped to his finger. Then the alarms would soon start beeping again. I couldn't stop myself from counting the number of beeps before the nurse came back. It seemed to take her longer each time.

Sometimes when my eyes were closed, Jackson would say "Hi!" so that I'd look at him. Then he'd point to the area he wanted massaged, either his feet, hands, arms, or shoulders. Although the time seemed to go by painfully slow, I was still thankful to have the opportunity to be there with my Jack.

When Angy staggered back into the room after her nap, we got a little "judgy" (as she called it) about the snoring mother in the waiting room. And when Angy walked past her around 8:00 to grab some breakfast, the mother was sitting up in the recliner, wrapped in a blanket, and playing on her phone. I guess she wasn't even curious about how her baby was doing.

Half an hour later, the mother sauntered in with wet hair and wearing clean clothes, obviously having taken advantage of the shower facilities. It wasn't long before she was gone again. Maybe it was because I was running on empty and had a bumpy ride through the night, but that really burned my hide.

Who has to shower and shampoo after only 1 night in the hospital anyway? (We knew she had arrived the same day that we did.) I didn't even take time to brush my teeth—just picked them with an interdental cleaner and chewed some spearmint gum. Why leave a kid's bedside when you don't have to? At any rate, I like to think of myself as a devoted nana rather than one who's just happy to have an excuse for being slack with personal hygiene.

And I'll admit that I was tempted to say something judgy to the baby's mother. But instead, I just prayed for the little guy, that God would heal him, comfort him, bring people into his life who would take care of him, and someday bring him to faith in Christ. Even when there's nothing else we can do for someone, we can pray, and that's a lot actually. I also thanked God once again for giving Jackson to us, but this time I added "instead of to someone like her." (Was that wrong?)

When Dr. Qureshi made his rounds, he told us that he had ordered an ultrasound and x-rays to make sure Jackson's stents hadn't moved and that we could go home after he got the results. Then his nurse (the one we weren't happy with about all the rescheduling) came in and said that we didn't need to wait for the results, that Dr. Qureshi wouldn't be able to read them until later anyway because he'd be in surgery, and they would just call Angy with the results since the doctor didn't anticipate a problem. Yay! We were all anxious to get out of there.

The ultrasound took a while, and it was important for Jackson to remain still, but he jiggles his legs when he's nervous. So Angy massaged one leg while I did the other one, and we had to keep soothing him and reminding him to be still. Then the baby started crying again, which unsettled Jackson. Angy asked the nurse, firmly but calmly, to please get the mother to take care of her baby so Jackson's ultrasound could be done.

The nurse said that the mother "had some things to do." Angy then basically said to just get the screaming kid out of there, so the nurse removed him from the room. She and the other nurses took turns holding him until Jackson's tests were over. At least the little guy finally got held. (Oops, there I go being judgy again.) And by the way, the rooms weren't all full, so we questioned the judgment of putting a crying baby in the same room with a special-needs teenager who has dangerously high blood pressure.

All things considered, Jackson did surprisingly well with the ultrasound. But then came the dreaded x-ray machine. We don't know what it is about x-rays, but they upset Jackson terribly. They don't take long, nothing touches him, and he only has to remain still a few seconds for each picture. But that poor boy cries like he's frightened out of his mind and experiencing tremendous pain. It's absolutely heartbreaking to watch.

After that ordeal, Angy began getting him dressed to leave. The nurse said that the PICU doctor would have to review the test results and determine whether Jackson could be discharged. Uh-uh. That's not how it works. Angy told her that we would be following the orders of Jackson's doctor and no one else. When the nurse saw that we'd had enough of PICU, she ordered a wheelchair for Jackson.

Pondering hospital transport policies?

The minute the wheelchair arrived, Jackson walked over to it, sat down, folded out the footrests, placed his feet on them, and gave us a "let's go" look. That boy was ready!

We pushed him out of the room, but the nurse stopped us. It seems that she ordered the "wrong kind of transport." The one she should have ordered comes with a person to push it. Seriously? We just stood there in the hallway, too tired to argue. Then the nurse finally decided that she could push the wheelchair. (Deep breaths ...)

On the way home, we made the requisite stop at Walgreen's to get Jackson more body lotion—8 tubes this time instead of 5 since this was after the actual surgery. Then we drove through Chick-fil-A to get that starving boy something to eat. (He had tried a bite of the non-food-like pancakes in PICU and spit it out.)

That afternoon, I had the best nap of my life. Angy said that she and Jackson did too, until she was awoken by the little ones coming home from school. Five-year-old Sara, apparently not understanding her own words, greeted her groggy mother by saying, "I can't believe Jackson survived the surgery!" God only knows what was going on in that little head of hers.

We're so incredibly grateful that our Sovereign Lord took care of all the details and the timing of everything ... that He allowed the little trials and inconveniences (which we have no right to complain about) for His purposes ... and that He turned Jackson's distress into joy.

Inches from a clean getaway . . . then free at last!

Of surgery and sovereignty, part 1

noreply@blogger.com (Anonymous) — Sun, 14 Sep 2014 02:32:00 +0000

In late July, Jackson had his annual exam with his cardiologist, Dr. Wolf, who scheduled an MRI for 2 weeks later to check out Jackson's stents. Next was an appointment with Dr. Qureshi, who replaced our beloved Dr. Petit as the heart catheterization (cath) doctor at Texas Children's Hospital. Dr. Qureshi said that Jackson would most likely need surgery to dilate the stents and he'd prefer to do everything at one time so Jackson wouldn't have to be under anesthesia twice.

We liked the plan. However, it meant that the combined procedure (the "cath lab") would be a month away instead of 2 weeks, so it would be even longer before we'd know about the state of Jackson's stents. Because it had been over 4 years since his previous cath surgery, we were anxious about how the stents were doing. Dr. Petit had said they would narrow over time and need to be dilated in a few years.

The more narrow they become, the more stress is on Jackson's heart and the worse he feels. It's a gradual thing, so it's hard for Angy to see a difference in how he might be feeling, which he's never been able to express anyway. We can only discern the basics, like when he's happy (which is, thankfully, most of the time), upset, or angry.

Jackson's verbal communications have improved, but we can't always understand what he's saying so we'll ask him to type it. On a computer, he'll type what he wants to convey in the browser search box, and on a phone, using the notepad. Angy could tell something was wrong with Jackson recently. She handed him her phone and told him to "type what's wrong." When he handed back the phone, Angy read, "What wrong." At least Jackson is a good speller.

The cath lab was scheduled for September 4 at 8:00 a.m., which meant a 6:00 a.m. arrival time. We were happy to be first on the schedule since Jackson can't eat or drink beforehand, and it's really hard on him (and us) if we have to wait a long time. At 6:00 the evening before, Dr. Qureshi's nurse called Angy and said they were moving Jackson back to 1:00 p.m. to do another patient ahead of him. They weren't sure what all was going to be needed in the first procedure and had no idea how long it would last, so who knew when or even if Jackson's would be done. But the nurse assured Angy repeatedly that regardless of how long the first procedure took, Dr. Qureshi would do Jackson's afterward.

Angy checked with the nurse the following morning before we left to make sure that everything was on schedule and that Jackson's cath lab would indeed take place that day. She was assured once again that it would. So we arrived at Texas Children's by the appointed time of 11:00 for the 1:00 procedure. Jackson was so nervous by that time that we could feel the car move as he jiggled his legs. But walking down the hall toward the surgery waiting room, Jackson led the way in his recently developed attitude of "let's get this thing done." What a brave boy he is. As he reached for the door handle, Angy got a call from the nurse and told Jackson to wait. Incredulously, Angy was informed that his cath lab would be rescheduled.

It's difficult not to be incensed when you feel like your child is being treated like he doesn't matter and you're getting jerked around. Angy told the nurse that we would wait at the hospital until we were given a new date and that it had better be soon. She also expressed her displeasure about receiving assurance a mere 2 hours ago and now being told to just go home. We waited quite a while for the nurse to call back. She said that Jackson's new appointment was on October 6, which was another month away! Having been told by his cardiologist back in July that he needed an MRI as soon as possible, that just wasn't acceptable.

Angy let the nurse know that we would continue to wait while they came up with a better solution. As we waited, we talked about God's sovereignty, how nothing happens without His permission, and how His timing is always perfect. We talked about how God knows all things, and apparently, that day wasn't the right one for Jackson's cath lab. Reminding ourselves that God is in 100% control of every detail in every situation helped to calm us down and keep us from chewing out the nurse. The next call Angy received was just more of a frustrating runaround. She was finally told that they would have to get back to her about a possible earlier date.

I can't explain how disappointing it was to go through all the planning and preparation that one of Jackson's hospital stay requires, to look forward for a month to getting it over with, and to get all prayed up and psyched up, only to have it not happen. But the knowledge of God's sovereignty made it all okay.

Playing with his hair in the car

On the way home, we had to stop at Walgreen's so Jackson could get some scented body lotion (yes, had to). After dropping Angy off at her house, I brought Jackson home with me, so at least I didn't burn a vacation day for nothing. Finally able to eat, Jackson got to enjoy a big cheese quesadilla, then an afternoon of lying in my bed, watching Team Umizoomi videos, inspecting his 5 new body lotions, and getting foot and hand massages. It turned out to be a good day after all.

The next day, Angy received the news that Jackson's cath lab would be the following week on September 10 and that he would be first on the schedule. Thank you, Lord!

Since I got so wordy describing the events leading up to the actual surgery, I'll save that for the next post (soon to follow). In the meantime, let's remember that:

The Lord has established His throne in the heavens, and His sovereignty rules over all (Psalm 103:19).

A good day for dental surgery

noreply@blogger.com (Anonymous) — Mon, 21 Jul 2014 04:30:00 +0000

Jackson has a high tolerance for pain, so when he spent an entire night pointing at his tooth and crying, Angy knew it was bad. Christian and Sara tried everything they could to make their big brother feel better, but nothing seemed to help. And since Jackson cried all night, Angy did too.

She was able to get him in quickly to see his dental surgeon at Texas Children's Hospital, which is quite unusual, even for a dental emergency. The problem was a broken and infected wisdom tooth, so the visit netted Jackson pain medicine, antibiotics, and a date for surgery two weeks away.

When Jackson has his teeth worked on (which always includes a deep cleaning and whatever they find that needs fixing), it's by the dental surgeon and under general anesthesia. Since it's a big deal for a child with aortic stenosis to have anesthesia, Jackson has to be examined by his cardiologist first. His annual checkup happened to be the following week, so everything was falling into place, and the appointment went well. Jackson's blood pressure is still high, but it's what's normal for him, so he got the green light for surgery. (An MRI under light sedation will follow in a few weeks to check out his stents.)

The dental surgery was infinitely better than our last experience about five years ago. By the time we were called to the recovery room back then, Jackson was awake, freaked-out, and inconsolable. For hours, he fussed, cried, made loud guttural noises, gagged, and threw up blood. At one point, it took four of us—two nurses, Angy, and myself—to restrain him. As we struggled, I slipped in some of his vomit on the floor and wrenched my back. It was a tough day for all of us.

This time, however, we were in the recovery room before Jackson came to. I think that helped, plus the fact that he's older and more accustomed to hospital visits. Like I told him in the car on the way there, he's getting to be a pro at this kind of stuff.

The instant Jackson opened his eyes, he had a sudden look of terror. Angy and I rushed to his side to calm him down. The nurse quickly removed his oxygen mask and the tube from his throat. Jackson gagged and threw up a few times, and although it took almost three hours before they let him go, there was none of the ruckus like last time. Thank you, Jesus.

I came prepared with an attachment from my back massager that Jackson likes me to use on him. It's flat on one side and round on the other, so I palm the flat side and rub his back with the round side. I did it pretty much nonstop.

Jackson said "iPhone" to Angy because he wanted to listen to music. Even though cell phones are prohibited in the recovery room, the nurse said it would be OK. (Good nurses are worth their weight in gold.) He first listened to Linkin Park. The nurse smiled and said it wasn't what she was accustomed to hearing in the children's recovery room. Then he listened to Florence and the Machine, Beastie Boys, Black Eyed Peas, and ... Mickey Mouse. Between the music and the back massage, Jackson was able to remain calm.

He wasn't as nervous and anxious beforehand, either, as previous times. When a nurse called us from the waiting room for some prep work, Jackson walked ahead of us, as if eager to get it over with. She held open the waiting room door as we walked through, and Jackson forged ahead like a man on a mission. Since he seemed to be leading the way, the nurse called out directions: "To the right, through the doors on the left, and it's the first room on the left." Jackson went straight to the room, opened the door, and took a seat as we filed in behind him. I found that to be somewhat amazing.

When it was time for the surgery, Jackson led the pack again with his "let's do this thing" demeanor. He walked ahead of the anesthesiologist and the nurse, with Angy and me bringing up the rear. As we reached the double doors, we were told to return to the waiting room and they'd call us when he was in recovery. It seemed strange to see Jackson just walk off with them like that. A memory flashed in my mind of us watching him as a toddler being pulled away in a red wagon to surgery. Things sure have changed.

Some things remain the same, though, like Jackson's affinity for the gift shop. He pointed at it when we arrived at the hospital, and I told him that afterward he could get whatever he wanted. He smiled and said in his sing-song voice, "I love you." Angy said that when she brought him for his appointment two weeks prior, the exact conversation took place between the two of them, even down to him saying, "I love you," at the same spot. What a precious deja vu moment.

It was after 4:00 by the time Jackson was released. He was still feeling the effects of the anesthesia and didn't even seem to notice the gift shop as he was wheeled past it. At least while we were waiting, Angy had the foresight to get him a treat from there that he could enjoy the following day. But next time, we're going to arrive extra early so that boy can visit the gift shop before his surgery.

All in all, things couldn't have worked out better, even traffic-wise. Traveling to the hospital that morning, we had two near misses on the freeway because of other drivers not paying attention. If either one had happened, it would have been a serious accident. Mere inches and split seconds made the difference. And driving back from the Medical Center in 5:00 traffic could have taken hours, but we kept moving the whole way home.

Although two weeks was a long time for Jackson to wait to get his tooth fixed, it gave us more opportunities to pray and seek God's favor upon the day. The Lord heard, and He was gracious to us.

Give ear, O Lord, to my prayer; And give heed to the voice of my supplications! In the day of my trouble I shall call upon You, For You will answer me. There is no one like You among the gods, O Lord, Nor are there any works like Yours. (Psalm 86:6–8)

Super sweet 16

noreply@blogger.com (Anonymous) — Mon, 16 Jun 2014 03:44:00 +0000

"Happy birthday!" Jackson said in his singsong voice when he got in the car. He was referring to his own. We were on the way to Mom's where he would have the last of three observations of his special day. They were each low-key, but they added up to a nice week for Jackson.

Jackson walking Sara into church

Although "sweet 16" is meant for girls, it's certainly fitting for that boy. And what a loving, caring big brother he is. When he's walking across a parking lot with his siblings, he'll reach down and grab Sara's or Christian's hand to make sure they're safe.

Jackson has a special love for his little sister. All throughout the day, he says, "Hi, Sara," while smiling and waving at her. When she was sick with a virus that lasted through the weekend of his birthday, he lay on the twin bed next to hers for three days.

Angy kept hearing "Hi, Sara" coming from the bedroom. She asked Jackson to please be quiet and explained that people don't feel like talking when they're sick. But as soon as Angy walked out, she heard "Hi, Sara." That sweet boy just can't help himself. She would sometimes find Jackson sitting up, smiling over at his sister and trying to make her feel better.

After all that close contact, we thought that he would surely be the third child in the house to catch the nasty virus, but God spared him except for a light touch of it.

Now here's a rundown of Jackson's birthday week ...

Sunday, June 1: Jackson spent his actual birthday at home because of the virus quarantine. Angy gave him two tubes of Bodycology lotion that he'd been staring at on the computer and longing for. Then she picked up his gift from his cousins Evyn and Ezra—new ear buds to replace his broken ones and some scented lotion. Jackson was very happy. To thank his cousins for the gift, he texted their parents, "zach and kelly hi."

Since Jackson doesn't like cake, Angy put a tall candle in a bowl of gummie Life Savers, and the family (sans Sara) sang the birthday song. In between the gifts and the singing, Jackson was lying on the bed next to his sick baby sister.

Wednesday, June 4: With the quarantine lifted, Angy took Jackson out for a day to do whatever he wanted. The first stop was Home Depot to play with the washing machines. Next was Bath & Body Works to pick out scented hand sanitizers, and finally, Walmart to get two more tubes of Bodycology. (Jackson must have them in two's.) Angy offered to take him to lunch, but he said, "Go home."

Sunday, June 8: The celebration at Mom's after church included a birthday balloon, a birthday doughnut with candles, and another performance of the birthday song, so I think it qualified as an actual party.

Mom and Rex gave Jackson two bags of hand sanitizers. Deke and Kim also gave him hand sanitizers plus a Bath & Body Works gift certificate so he could pick out more. I made Jackson a card with photos on the front and back from many of his birthdays leading up to this 16-year milestone. Inside was the promise of a trip to Walmart so he could pick out what he wanted.

Birthday card

At Walmart afterward, Jackson selected six tubes of Bodycology, two each of three different scents. I asked if he would also like a new shirt and he replied, "Yeah!" Angy picked out a pretty blue polo shirt for him, then Jackson selected two bags of candy. Satisfied with his shopping, he headed over to the car stereo display to have a good time testing them out.

In one way, Jackson is a typical teenager because he likes to look good. I was so pleased that he wanted a new shirt for his birthday instead of more lotion. And he really enjoys getting compliments about his appearance. Even when he gets a new pair of socks, he'll point them out for people to notice.

I love his self-esteem. Whenever I see Jackson, several times he'll say, "Teeth, hair," while pointing them out. I tell him how nice they look and how handsome he is. He does have great hair, and I'm glad that he's not self-conscious about his teeth. Jackson seems quite content with how God made Him, which thrills my soul. We should all be more like Jackson instead of complaining about our imperfections.

My 16-year-old grandson is already growing an abundant crop of facial hair. Darrell shaved off Jackson's chin hair, which was getting close to being a full-fledged goatee, but when he tried to shave his upper lip, Jackson wouldn't stand still and Darrell had to give up. I guess our young man likes how the 'stache is coming in.

Lookin' good, Jack!

Spa day and other things

noreply@blogger.com (Anonymous) — Thu, 12 Dec 2013 22:56:00 +0000

Jackson spent the night with me recently, and although it was cold and rainy outside, my big cuddle buddy with his warm heart and exuberant smile kept me feeling cozy. He often repeated "Nana's house" to let me know he was where he wanted to be. Jackson also kept repeating his knock-knock joke, which goes like this:

Him: "Knock, knock."
Me: "Who's there?"
Him: "Jackson who?"
Me: "Jackson Davis."
Him: "Yeah!"

As usual, he spent hours on the computer. Several times when I checked in on him, Jackson was listening to songs by Linkin Park while watching videos about planes and cars or while looking at pictures of colorful glass beads. As soon as I stood next to him, Jackson would motion for me to scratch his back.

He watched NFL football with me and his poppy in the living room, then later, cartoons in the bedroom. At one point during the football game, Jackson went to get my back scratcher. Instead of returning to the rocking recliner that he loves, he sat beside me on the couch. Then he pulled the long sleeve of his knit shirt over his hand and had me lightly scratch the back of his hand for at least a full quarter of the game.

Jackson loves to have his hands and feet rubbed with a menagerie of items, including tomatoes, balls, and solid-stick deodorant, but this was the first time he wanted me to use the back scratcher. What an interesting boy he is.

The next morning, he was so sweet to let me sleep as long as I wanted. Jackson was sitting next to me on the bed, and when he saw my eyes open, he beamed and applauded, then clasped his hands together and shook them in a "hip-hip-hooray" kind of way. (Note to husband: How about a little more enthusiasm when you see me in the mornings?)

It was spa day. Jackson has always hated getting his nails clipped, and it's a constant struggle at home. They have several nail clippers because Jackson hides them. Angy once opened the drawer where the clippers are kept to find that they had all been disassembled. I don't know how that boy managed to do it, but he made sure they were unusable.

The last time he was over, however, I discovered that Jackson will let me clip his nails by making it part of a special spa day. So for his manicure, I set out with the clippers a travel-size stick of his favorite Dove deodorant, cucumber-and-green-tea scented. After he lets me clip one nail, I reward Jackson by stroking just that finger with the deodorant several times. I repeat the process for each finger, then massage in the deodorant when we're done. No struggle at all.

For his pedicure, I have his feet soaking in a little tub of warm sudsy water while he watches cartoons and gets a shoulder massage. Then I clip his nails as quickly as possible. The only time he makes his "angry hand" is when I do the corners of his big toes, so I save those for last. Afterward, I use a gentle exfoliator that he seems to enjoy, probably because it's another thing being rubbed on his feet.

Finally, I clean Jackson's face with my Neutrogena astringent while he reads the bottle, and then I comb his hair. I love grooming my big doll.

Speaking of hair ... Jackson spent a lot of time as usual playing with mine. He tousles it around, smooths it down, grabs it at the crown and holds it taut, and sometimes says what sounds like "lar, lar, lar." It's just another one of his things.

Jackson playing with my hair when he was 7

I had a lot of laundry to do, which was good news for Jackson. His lifelong obsession with washing machines is still going strong. He accompanied me to the garage for every wash cycle and dry cycle. I would explain my choice of settings for each load, and Jackson's job was to spray the lint trap with the water bottle so I could easily pull off the lint. It was a good time.

Jackson playing with my mom's washing machine when he was 6

For a while that afternoon, we had the TV on the Today's Country music channel. When the song "Sunny and 75" came on, Jackson and I got up and danced. He didn't make the full song, though, deciding instead to stand behind me and play with my hair while I made subtle little dance moves.

Then he sat down and watched me dance to a Toby Keith song. Although Jackson's amazing ear for music gives him no tolerance for bad singing (he slapped me when he was a toddler as his way of telling me to stop), he's apparently okay with bad dancing. He smiled the whole time, either because he likes dancing of any kind or he was amused by how ridiculous I looked.

Being with Jackson lets me forgo the trivialities of life that I stay so busy with and just relax—just enjoy the moment. He's a gift in so many ways.

Behold, children are a gift of the Lord,
The fruit of the womb is a reward.
Like arrows in the hand of a warrior,
So are the children of one’s youth. (Psalm 127:3–4)

And may I add, the grandchildren of one's old age.

PS: Big news from September
It was time for Jackson to start senior high school, but Angy was apprehensive about it. First, to attend the school with his required curriculum, Jackson would have a 45-minute bus ride each way.

More importantly, in a school that large, with kids that age, and with Jackson less isolated, there would be a greater possibility of him being mistreated. And with his communication disabilities, he wouldn't be able to express it if something did happen.

So now that Angy is for the first time ever a stay-at-home mom, she decided to start home schooling Jackson. The curriculum is basic life skills anyway, so it's not like she has to learn algebra.

Besides, Jackson has been going to school since he was 3, which means that he's already put in 12 years. And for the last two years, he has absolutely hated going to school. Jackson was thrilled when Angy told him he didn't have to go back!

He seems happier than ever these days. And it pleased him to hear Angy say that he's a grown-up now. Jackson even had her repeat it to Darrell when he got home that day.

Thank God for working out the details, including Angy getting laid off. The Lord knows what's best for us and prepares the path. We just need to follow it, and we need His Word to know how.

Your word is a lamp to my feet and a light to my path. (Psalm 119:105)

Worth the wait

noreply@blogger.com (Anonymous) — Sun, 09 Jun 2013 02:36:00 +0000

After 15 years, it finally happened. And it was worth the wait. For the first time, Jackson said, “I love you.” Not clearly, of course, but the message was unmistakable.

This monumental milestone occurred a couple of weeks ago when a nasty stomach virus was being passed around at his house. Among the kids, it hit Sara first, then Christian, and Jackson last. Angy had already spent days cleaning up after sick kids—including Mother's Day—before Jackson got it. And our big darlin' won't throw up in a container. It just happens wherever it happens.

So Angy spent a lot of time throughout the days and nights bathing him (in addition to continually washing clothes, towels, and sheets). After getting Jackson cleaned up the first time, she heard those long-awaited words, “I love you.” And after every clean-up, she heard them again. What a way for Jackson to say thank you! And how sweet God is to give her that when she needed it the most.

The next time I saw Jackson, Angy was at home sick, so the kids and I were in the car without her. Jackson was so happy to get to ride in the front seat. When I got in beside him, he smiled and said, “I love you.” It was the first time I got to hear it, and I have no words for how much it blessed me.

Jackson turned 15 on June 1 and Sara will be 4 on June 11. They had a joint party at Mema and Rex’s last Saturday with a bouncy house and a rock-n-roll theme. Jackson actually wore the weird glasses, which was an unusual thing for him to do.

Jackson's 15th birthday party

He had been saying and singing “Happy Birthday” for weeks prior. The party apparently lived up to his expectations, because Jackson was in a glorious mood all day. And his joy is infectious. After we sang the birthday song—to Jackson's great delight—he blew out the candle on his third attempt, and we applauded enthusiastically. As Angy passed out cupcakes, five-year-old “Little” (aka Dale Box III) said, “This is a really happy day.” Amen, Little.

Jackson received gift cards for iTunes and Bath & Body Works, plus lots of scented hand sanitizers and body lotions. When he opened the Bath & Body Works gift cards from his Uncle Deke, realizing it meant he would get to browse the store and smell everything in it before making his selections, Jackson said, “Bye.” He was ready to go right then, even before opening the rest of his gifts.

Every day since, he's been telling Angy, “Birthday on Saturday.” Jackson doesn't get the concept of time, and he was wanting another one the following week. Maybe when we buy him hand sanitizers one day and he begs for some again the next day, he really thinks it's been an awfully long time since he's gotten any.

Yet another milestone occurred a few days ago. Angy and I were talking on the phone, and I could hear Jackson in the background repeating, “Hi. Hi. Hi.” She said he was waving while he said it. Although Jackson has never asked to speak to me on the phone, he started tapping his ear. Angy realized it was his way of signing that he wanted to talk, so she held the phone to his ear.

People who don't know Jackson probably wouldn’t have understood his words, but Angy and I heard, “Mema's house. Grandma's house. Nana's house.” He was wanting to go somewhere, anywhere, and didn't care whether it was to my mom's, Darrell's mom's, or my house. I told him when we leave Mema's on Sunday, I'll bring him home with me for a while. His response was, “I love you. I love you.” Then he walked away from the phone.

Jackson also told Sara the other day that he loves her. Hopefully, this isn't just a phase he's going through and he won't stop saying it. Jackson has always looked into my eyes with such love that I never doubted how he felt, but it's beyond wonderful to actually hear him say it after all these years. The long wait makes it even sweeter.

“Now therefore, our God, we thank You, and praise Your glorious name.” (1 Chron. 29:13)

A musical Christmas

noreply@blogger.com (Anonymous) — Mon, 31 Dec 2012 18:54:00 +0000

It was a question asked of every child: "What do you want for Christmas?" Jackson's answer, however, was simpler than most: "Music."

This photo shows how happy Jackson was to get his iPod on Christmas morning. And at our annual Christmas Eve celebration, he was happy to receive an iTunes gift card. I was concerned that he wouldn't be impressed with a little piece of plastic, but he recognized the logo and apparently knew what the card was for.

We also got Jackson a Symphony in B music toy that he really likes and, of course, 10 of his beloved pocket hand sanitizers in seasonal scents (Candy Cane Bliss and Winter Candy Apple).

Jackson's taste in music is certainly eclectic. Pop, rock, hip-hop, country, gospel, classical, Tejano, children's music—he likes it all. When we're in the car, he's often busy adjusting the controls of the radio and switching the station. Jackson usually leaves it on country longer than other stations, which I assume is because he knows I like it. Walmart shoppers near the test display of car stereos aren't as fortunate, being subjected to short bursts of constantly changing stations and settings. Jackson is like the Wizard of Oz behind the curtain, working with focused intensity.

My mom takes him to Walmart most Saturdays, and I took him the day after Christmas. While he did his thing with the car stereo display, I inspected every automotive accessory on the aisle as if I were an actual shopper, just in case an employee might think of shooing us away like the time we got run off at Home Depot for playing with the washing machines. God bless those Walmart folks. Jackson was able to play with the car stereos unencumbered for what seemed to me like an extremely long time.

Continuing on his usual Walmart path, Jackson went to sniff the body lotions, sprays, and deoderants. Then it was time to sit on the bench in the pharmacy, watch people go by, occasionally wave and say "Hi," and read the labels of the body sprays he had selected. Jackson resisted as long as possible before he finally sprayed a generous amount into the air. The poor man sitting next to us waiting for his prescription began coughing uncontrollably, so I told Jackson it was time for us to get up.

The last part of his Walmart ritual is to select a snack, which was a bag of Nutter Butter Cookie Bites. On the way home, Jackson once again attended to the business of setting the radio dials and station.

He's spending hours every day on his iPod, which he proudly shows to people. Here's what Jackson has downloaded so far:

Several songs by Linkin Park, a rock band that's currently his favorite
My Life Be Like (Ooh-Aah) by GRITS, a Christian hip-hop group
Renegades of Funk by Rage Against the Machine, a rap metal band
Ring of Fire by Johnny Cash (no introduction needed)
A music app for playing different instruments
And a flight simulator app

For more about Jackson's affinity for music, see my post from July 2010, "He keeps me singing as I go." Also, a new "Hi, I'm Jackson" video clip is in the upper right corner. And be sure to check out my new blog, Cooking with Rocks.

Closing out 2012 with a praise
Thanks be to the Lord my God for allowing Jackson to make it all the way through 2012 without a stay in the hospital!

"He is your praise and He is your God, who has done these great and awesome things for you which your eyes have seen." (Deut. 10:21)

14th Birthday Party

noreply@blogger.com (Paula Perry) — Mon, 04 Jun 2012 00:04:00 +0000

Jackson was very excited about his party today. It was a small affair, but that didn't matter because it had all the ingredients for a great party—pizza, cheesy bread, and gift bags full of fragrant hand sanitizers.

Jackson doesn't like cake, so we put a candle in a cup filled with gummy lifesavers. And he seemed to really enjoy having us sing Happy Birthday to him. It's so hard to believe our big doll is 14!

Lately, Jackson's been hanging out with us more in the living room instead of being on the computer in the bedroom. I like that. And the last couple of times he's been at the house, he actually sat for hours in the living room with me and Robert watching TV. I was concerned that the miniseries on World War II in the Pacific might have too much graphic violence, but inexplicably, when soldiers were getting their heads blown off, Jackson chuckled a couple of times.

It reminded me of how as a toddler, he would watch boxing matches on Friday nights with my dad. When a fighter landed a punch, that little boy would just giggle. And once in a doctor's waiting room, Jackson laughed with delight at a crying baby. Although he's extremely sensitive to people he knows getting their feelings hurt or having an argument, I guess he doesn't associate any real pain with anonymous crying babies or fighting men.

Jackson himself has a high tolerance for physical pain (for an example, see my first post in Nov 2009), but he has the most tender, compassionate heart of anyone I've ever known. And I can't stand to see him upset.

Darrell usually picks him up from our house, and Jackson's OK to leave. But a few weeks ago, Darrell was at work and Angy asked us to bring Jackson home. Robert and he sat in the front, and I sat in the back. As we pulled out of the driveway, Jackson started weeping. No sound, just tears rolling down his face. When I reached up to try to comfort him, he grabbed my hand and held it to his chest all the way home while his tears continued to fall.

It got even worse when we arrived at his house. Angy said that Christian and Sara (Jackson's young siblings) would get upset if they saw me, so she asked me to drop Jackson off at the driveway before we got in front of the house. It was so horrible asking him to get out of the truck and carry his bag up to the door by himself. When I hugged him goodbye, Jackson was crying harder, and Angy called to tell me that he was sobbing when he got to the door.

I cried all the way home, cried in the shower, cried in bed later that night, and every time I thought about it over the next few days, I cried again. I just can't deal with such a sweet, joyful, precious child feeling hurt like that and especially being the cause of it. Never again will I ever drive Jackson home! He'll just have to stay until someone can pick him up.

I can't explain nor do I fully understand why it affected me so deeply. And yet, I'll admit that I've judged others for their reaction to an adverse situation. Sometimes I thought that they shouldn't take it so hard, because after all, I wouldn't. Shame on me. Something that might seem inconsequential to me might be momumental to someone else.

A good thing about pain is that it brings us Closer to Love—closer to the awareness of our love for someone, closer to God who is love. Only He fully understands our pain. Only He can heal it. And only He can shield us from receiving more than we can bear.

Like the song says, "We're all one phone call from our knees." I thank God for every day I don't get a phone call that brings me to my knees, and for the assurance that if and when I do, He'll be on the floor beside me.

Clean hands for the class clown

noreply@blogger.com (Paula Perry) — Wed, 01 Feb 2012 22:09:00 +0000

Jackson's been doing well. His blood pressure is staying fairly steady within a range that's normal for him although high for others. He doesn't like the blood pressure checks in his leg, but thankfully, the difference between the pressure in his leg and arm is staying about 10 points. I pray that it doesn't go higher and that Jackson's 2012 doesn't include a hospital stay.

He still tells us all the time that he's happy. Oh, how that blesses my heart. And his obsession with travel-size hand sanitizers is still going strong. Even though he was thrilled to get over 50 bottles for Christmas, he continues to beg for them weekly. He says "five" repeatedly (they're five for $5) until someone gives in and takes him to Bath & Body Works.

Jackson looks online first to check out the featured scents and decide what he wants. Angy or Darrell usually buy him five every Saturday, and he asks me for five on Sunday. Last week, it was Mango Mai Tai and this week, it was Island Margarita (he's currently into the cocktail-themed scents). But instead of asking for the usual five, Jackson smiled so sweetly and said, "Five . . . six, seven, eight!" He has hundreds upon hundreds of little hand sanitizers. But considering how they're handy to have around (although Angy has to sneak what she wants; Jackson doesn't ever give 'em up) and considering how he never asks for anything else, I guess it's not a bad obsession to have.

Jackson carries a handful everywhere he goes, smelling them, rubbing them on his hands and arms, and lining up the little bottles to look at them. Scented hand sanitizers apparently mean a lot to him, so a lot he shall have!

Jackson requesting 5 Island Margarita hand sanitizers

Last Friday, Angy and Jackson's teachers had their annual ARD meeting (Admission, Review, and Dismissal process for Special Education students). Since he's a big 13-year-old now, Jackson attended the meeting for the first time. In earlier years, the teachers talked about Jackson living independently someday. Now, they're recommending that Angy and Darrell go through the legal process to get guardianship rights that will extend beyond Jackson's 18th birthday, because they expect he will always have to live at home. They also said that because of Jackson's disabilities, he can stay in school until he's 21!

Here are some of the teachers' statements from the document on Jackson's "Present Levels of Academic Achievement and Functional Performance":

Jackson is a huge helper. He is great at holding the door for everyone. He can wipe down tables, boards, and vacuum when prompted. He can fold laundry with guidance and loves to do the laundry! (Good luck getting Jackson to vacuum at home, Angy.)
He is great at the computer. (No surprise there.) Jackson works very hard and gets excited when he completes his work. He is also great on the calculator. Jackson can add and subtract simple numbers 4 out of 5 times correctly. He can tell time to the minute almost perfectly every time.
Jackson uses gesturing, pointing, and vocalizing to indicate his wants and needs. He becomes easily frustrated and will hit the table with his hand or yell. (I can't imagine how frustrating it would be to be unable to clearly communicate your wants and needs.)
He is able to brush his teeth by himself. (Who knew! I think Jackson's been playing us.)
He is on a 5th grade reading level and can read sight words 9 out of 10 times correctly. Jackson can write out his name, address, and phone number correctly on the computer.
We are currently working on his comprehension of short stories or paragraphs and typing in complete sentences and with correct punctuation. (As an editor, this thrills me like you wouldn't believe.) He understands very well the questions we ask him and has mastered his use of prepositions. (Yay, Jackson!)
He can catch, throw, bounce, roll, kick, and strike a ball. Jackson requires prompting to throw a ball toward a partner or target; he often chooses to drop the ball instead. (I don't know why, but this makes me laugh.) He loves bouncing on an exercise ball and going up and down stairs.
Jackson seems to enjoy school and likes participating in class activities. He always comes into class with the biggest smile on his face. He loves to be praised and talked to about what a good day it is going to be.
Jackson is great with his peers. Although he does not interact with them much, he always smiles at them and says, "Hi." He is pretty quiet most of the day, but is always full of joy. (That's our boy.)

The teachers told Angy about Jackson making silly noises that he knows will get a classmate (who's nonverbal and in a wheelchair) to make silly noises too, and then the whole class starts laughing, which is his purpose for doing it. Our precious boy who brings so much joy to us is the class clown!

"A joyful heart is a good medicine." Proverbs 17:22

Disappointment, but a joyful walk

noreply@blogger.com (Paula Perry) — Sat, 13 Aug 2011 22:25:00 +0000

When things are going well, as they usually are, I get comfortable and even complacent. Until Jackson's checkup last Wednesday, it had been quite a while since I prayed specifically about his heart condition. And because his daily blood pressure checks have been remaining normal for him, I expected good news. But after hearing about the results of his checkup, Jackson's health has been foremost on my lips during prayer.

Dr. Petit said that Jackson's aorta may be starting to grow into the stents because the blood pressure in his leg was much lower than in his arm, which could also be causing him leg pain from poor circulation. He increased Jackson's medicine (for the umpteenth time now) and said to start checking his blood pressure on his leg as well as his arm.

If it turns out that the aorta is growing into the stents, Dr. Petit could balloon them again in lieu of open heart surgery, which is made more complicated and dangerous according to the number of stents. Jackson has five.

To refresh your mind or bring you up to speed if you're a new reader of Jackson's Journey, here's a brief recap of the heart journey so far:

January 2010: Jackson was in the hospital for four days. Surgery the first day was to put two stents in the upper part of his aorta, but one of them moved to a dangerously low position. The next morning, he had surgery again to add a third, larger stent in his upper aorta and move the bottom stent to a safe place (although its location can cause stomach pain).
April 2010: A checkup revealed that Jackson's blood pressure was still high and that although his aorta was nice and big where the stents are, everywhere else his aorta showed damage from coarctation.
October 2010: After a few days of dangerously high blood pressure (like 230 over 111, which is stroke territory), Jackson was in the hospital for nine days. One stent was closing up and his heart had gotten bigger from working so hard. He had surgery to balloon the three stents and add two new ones.

Dr. Petit said if everything went well, it would be four or five years before the stents might need ballooning again. I was so hoping for a nice long stretch between hospital stays. With the checkup results this week, however, it looks like it could be much sooner.

Darrell took Jackson to Texas Children's Hospital for the checkup. They had an incredible 3-hour wait to see the doctor. What's even more incredible is that the entire time, Jackson sat patiently in the waiting room, often saying "heart" and then "doctor," perfectly happy to just be hanging out with his dad.

We have no idea how much pain Jackson is in on a regular basis—resulting from heart and circulation problems or from scoliosis—but he's always happy. Except, that is, for those joy-encroaching moments like when his parents tell him he's had enough pizza, or they fuss at Christian or Sara (Jackson has zero tolerance for disharmony), or suggest that he give a Willy Wonka Sploshberry to Christian. (I totally get having two full bags and yet not having a piece to spare.)

Since Jackson began a few months ago pointing to his eyes and saying "Happy," I haven't been around him when he didn't say it often. He must want to keep reassuring us that he's happy, maybe so we'll be happy too. The photographer who took this photo of Jackson posted it on her blog with the caption, "He exudes joy." Indeed he does.

Being around Jackson is a constant reminder that joy isn't dependent on our circumstances, but wholly dependent on our relationship with the Source of true joy. I think Jackson and Jesus must be really close.

"These things I have spoken to you so that My joy may be in you, and that your joy may be made full." (John 15:11)

What things had Jesus spoken? Instructions to His disciples to abide in Him. To remain in Him. To stay in fellowship with Him. To stay close to Him. Why? So that His joy would be in them and their joy would be full.

In His creation of Jackson, God removed some of the barriers that can hinder people from remaining close to Him. With a clearer path than most for walking alongside Christ, it's no wonder that Jackson exudes joy.

In case you haven't noticed my motto posted in the right column, it's that as Christians, we have nothing to fear, no reason to worry, and no right to complain—ever. We can have deep, abiding joy, regardless of our circumstances. I forget that a lot, but Jackson is always there to remind me.

A new journey begins

noreply@blogger.com (Paula Perry) — Sat, 04 Jun 2011 18:39:00 +0000

I'm happy to report that Jackson has been doing great. No new health issues is one reason I haven't written in a while, another is my crazy busy job, and another is my focus on completing version two of my manuscript. It's a fiction novel with one of the main characters a 17-year-old boy with Williams syndrome, which I started writing when Jackson was 7 (I'm slow). More on that another time, though . . . guess who started his teenage journey?

Yep, our boy turned 13 on Wednesday! We took advantage of the Memorial Day holiday on Monday for an early celebration. Angy and I took Jackson and Christian out early to eat pancakes and go to the mall. (Christian said he wanted to go to his brother's "party.") At the restaurant, Jackson kept smiling his broad, exuberant smile, sometimes squeezing his thumbs and index fingers at the corners of his eyes and saying, "Happy." God bless him. It's like he wants us to look in his eyes and see that he's happy. Maybe Jackson realizes that the eyes reflect the soul.

After breakfast, we went to Barnes & Noble and hung out in the children's section until it was time for the mall to open. I wanted to buy Jackson a book or toy there, but he wouldn't have it. I think he was worried that if he got something at Barnes & Noble, he wouldn't get as much at the mall of the things he really wanted—scented sprays, lotions, and hand sanitizers.

Jackson led us through the mall to Sephora, Bath & Body Works, Victoria's Secret, and Penney's. He selected gifts at each store, except Sephora (thank goodness) where he tested many of their expensive perfumes. Between purchases, Jackson led us to seating areas so he could rest and check out his growing collection. After a few hours, he said, "Home," so that's where we went. What a blessing it is to hear him talk.

Angy told Christian recently to give Jackson a good-night hug, and he refused on the grounds that Jackson "stinks like perfume." That's an understandable perspective from a little brother, but as Jackson's nana, I don't care what he smells like—I want his hugs whenever I can get them.

The sense of smell is such a wonderful gift that God has given us. Can you imagine what life would be like if we couldn't smell? If we couldn't enjoy the scent of a rose, a newborn baby, a loaf of fresh-baked bread, an ocean breeze? To Jackson, God gave the special gift of a heightened sense of smell, and to us, He gave the special gift of Jackson. Praise His holy name.

One of my favorite praise songs refers to perfume, I Pour My Love on You by Phillips, Craig & Dean. Think about your favorite smells, about all of God's wonderful gifts, and give it a listen. Be blessed!

Different paths for different boys

noreply@blogger.com (Paula Perry) — Sat, 08 Jan 2011 18:30:00 +0000

I requested prayer for Brandon Cook in my last post. Yesterday morning, the Lord ended his suffering and brought him home. Brandon was a young Christian man in college who lived his faith. Ever since middle school, he made frequent trips to the Honduras mission field and was involved with Heart4Children. (In lieu of flowers, donations can be made in Brandon's memory.) Thankfully, his family has the biblical kind of hope—confident expectation—that they will be reunited with him in glory. I can't begin to imagine the pain, though, of being separated from your child.

I'm reminded of how our children and grandchildren are only on loan to us. They belong to God, who created them and who loves them more than we do. I'm so grateful that He chose our family to place Jackson in. And I'm grateful that Jackson is doing so well. Angy, Darrell, Christian, and Sara have been really sick for almost two weeks, but Jackson has miraculously remained healthy. I thank God for sparing him that, especially with all he's been through recently.

We had the most wonderful Christmas. Jackson is really hard to buy for, though. I got him the six lotions he kept asking for during his last hospital stay, and Angy suggested getting him a special contour pillow for CPAP (sleep mask) users. Jackson had always slept on his side or stomach, but since he's been wearing the mask, he's been forced to sleep on his back.

When Jackson got enough of the wrapping paper off to see what it was, he tossed the pillow aside. (What kid would be thrilled with a medical aid for a Christmas present?) But he ended up liking it.

Before Jackson got the mask, he never got a good night's sleep. Since he's been wearing it, he goes to bed at 10:00, wakes up at 6:00 and calls out for Angy to remove his mask, then sleeps without it until 7:00. Jackson's first night with the pillow, he slept solid until 9:30 in the morning! The next night, he pointed at the pillow, smiled, and said, "Pillow." Oh, that warmed my heart.

Jackson is obsessed with keys and locks, so for another Christmas present, Robert made him a little board with locks and latches on it and a handle for carrying. This present from Poppy was a hit. You should have seen Jackson's face light up when he saw his very own set of keys. Maybe, just maybe, he'll leave ours alone now.

But back to Brandon's family . . . thinking about how they're temporarily separated from him, I'm reminded of how Jesus was temporarily separated from God the Father—physically at His birth and judicially on the cross. He was never separated from God in essence, though. When Jesus added humanity to His deity, He became man, what He had never been before, without ever ceasing to be God, what He has always been from eternity past.

The pain Jesus endured is beyond comprehension, not only the physical torture, but the spiritual agony. The holy Son of God became sin, not a sinner, but the substitute for our sins to receive the full wrath of God's righteous judgment against sin. Only the God man could have withstood it. In His humanity, Jesus cried out, "My God, My God, why have You forsaken Me?" (Matt. 27:46)

My pastor, David Dunn, said Jesus made that statement so we wouldn't have to—that on the cross, God forsook Jesus temporarily so He wouldn't have to forsake us forever.

Hallelujah! Believers in Christ will never know the pain of separation from God's love.

For I am convinced that neither death, nor life, nor angels, nor principalities, nor things presents, nor things to come, nor powers, nor height, nor depth, nor any other created thing, will be able to separate us from the love of God, which is in Christ Jesus our Lord. (Romans 8:38–39)

A praise and a prayer request

noreply@blogger.com (Paula Perry) — Sat, 20 Nov 2010 23:45:00 +0000

Jackson's blood pressure is remaining stable, and he even had a record low the other day: 129 over 65! My heart overflows with gratitude to the only God and Savior, who is "righteous in all His ways and kind in all His deeds" and "near to all who call upon Him in truth" (Psalm 145:17–18).

At the same time, my heart breaks for another family. So instead of requesting specific prayer for Jackson this time, I ask that you please lift up Brandon Cook, his parents, and his grandparents. This young man is gravely ill, and although the cancer treatments have failed, our Savior never fails—even when the answer to our prayers isn't what we hoped for.

To quote the beautiful song Always, written by Jason Roy and recorded by Building 429:

I believe always, always
Our Savior never fails
Even when all hope is gone
God knows our pain and His promise remains
He will be with you always

Have a blessed and happy Thanksgiving. Among the countless things I'm thankful for are those of you who keep up with Jackson through this blog and keep sending up prayers on his behalf.

A long detour at the hospital

noreply@blogger.com (Paula Perry) — Sun, 17 Oct 2010 22:45:00 +0000

After nine days in the hospital, during which time Jackson had several tests, one surgery, and a zillion BP checks, he's back home and doing well. Thank You, Jesus! And thank you, prayer warriors.

Jackson got two new stents, so he now has a total of five. (We might start calling him the Tin Man.) The new stents are a different kind and are inside two of the original stents, one of which had closed up so much his aorta was the size of a newborn baby's. (No wonder his poor little heart was working so hard!) During the first surgery in January, the stents were ballooned to 9mm, and this time to 12mm, making Jackson's aorta the size of a 3-year-old's.

We went through the usual hassle with doctors and nurses being unfamilar with Jackson's case, having unrealistic expectations, freaking out over his BP (although being in the 230s is indeed stroke territory), and overtreating him. As Angy, Darrell, and I took turns staying with Jackson, we all had to stay on top of the medical staff to prevent their unnecessary torture of our boy. The physical, mental, and emotional fatigue of being in the hospital, taking care of Jackson, and dealing with the well-meaning but often misguided medical staff left us drained and exhausted. I'm so thankful we don't have to rely on our own strength.

I love you, O LORD, my strength. (Psalm 18:1)

We found out Jackson also has a slight stenosis in the aorta leading to his kidneys. Since the cardiologists have done all they can do at this point, the renal doctors are taking over Jackson's case as it relates to his BP medicine. They increased the dosage he takes mornings and evenings and added a new medicine for the afternoon. There's a concern that the new medicine won't work long-term. If it doesn't, the only recourse will be a medicine with dangerous side effects and a hospital visit to monitor it. So please join us in praying that our gracious God keeps Jackson's BP down and his stents open.

Jackson had some really rough times in the hospital, especially during the tests and after the surgery in ICU, but by God's grace, he handled everything surprisingly well. Jackson even got so used to the BP checks that he would sometimes help wrap the cuff around his arm. And over the weekend when he was only having his BP checked and medicine adjusted, we got to pretty much have a marathon slumber party.

We Christmas shopped online. About 100 times, Jackson showed me the body lotions he wants. Sometimes he would just look at me and say something while holding up two fingers. I knew he was talking about the lotion because he wants two of each. If he made a two-syllable sound, I knew it was "Pear Glace," and I could distinguish the five-syllable sounds as being either "Coconut Passion" or "Lost in Fantasy." I wrote them down (as if I could possibly forget after all those reminders) and Jackson checked my list to make sure it was right.
We sang a lot. It was just two songs, though, over and over. "Hot Dog!" by the Mickey Mouse Club and "My Life Be Like (Ooh Ahh)" by Grits, a Christian hip hop group. Those catchy little tunes are indelibly etched in my memory.
We danced a little. If those nurses had any idea what was going on behind our closed door, they probably would have kicked me out. Letting a kid with dangerously high blood pressure stomp around the floor? But it would last for only a few seconds, and Jackson looked so happy doing it. When he gets the urge, he smiles and says "dance" while flapping one arm like a chicken. Who could say no to that?
We ate whatever Jackson wanted. Pizza delivered to our room, pancakes at the cafeteria across the street, Sunkist Fruit Gems from the hospital gift shop, and plenty of Fanta sodas. Angy wanted Jackson to drink at least one bottle of water, but he hates it and was dead set against it, so she told him to just chug it down and then he could have more soda. As Jackson forced himself to drink some water, we encouraged him by loudly chanting, "Chug, chug, chug!" He would slam it down on his tray table, and we would clap and cheer. Then we'd do it over again until the water was all gone. It must have sounded more like a frat party than a kid's hospital room.

Thank God for moments like those. Actually, thank God for them all. Jackson is a gift, and every moment spent with him, whether good or bad, is a moment I wouldn't trade for anything.

A big dip in the road

noreply@blogger.com (Paula Perry) — Thu, 07 Oct 2010 23:38:00 +0000

Jackson was admitted to Texas Children's Hospital yesterday. A few nights ago, he said, "Hospital." Angy asked him if he wanted to go and he said, "Yeah." He must have known something was wrong.

His blood pressure has been dangerously high the past few days. Last night's reading was 234 over 111. Angy said that after nurses and others take his BP, they usually go whisper out in the hall, and someone today kept retaking it before concluding that the machine must be broken. It seems none of the staff at Texas Children's can believe Jackson's BP is so high and he hasn't had a stroke. What we can believe is that our omnipotent, merciful God holds Jackson's life in His hands.

Jackson had a CT angioplasty today so the doctors can try to determine what's going on. The initial reading was that one of his stents has a stenosis (it's closing up), that his heart has gotten bigger because it's working so hard, and that there might be other problems as well.

Because of Jackson's high BP, they were afraid to give him the usual anesthesia to keep him still for the procedure, so he had to be forcibly held down. And he's had no food or drink all day as of late this afternoon because they don't know whether he could be sent to surgery at any moment. I sure hope he's had something by now.

Angy said that Jackson has been handling things well, that he just keeps asking to go to Walmart. On the way to the hospital in the morning, I'll definitely be stopping by Walmart to get him two bottles of body spray (he always insists on getting a minimum of two at a time).

I'll be at the hospital the next four days, assuming Jackson will be there at least that long. So I'll be away from my computer and will write an update when I'm back. You know what to do in the meantime.

Devote yourselves to prayer, keeping alert in it with an attitude of thanksgiving. (Colossians 4:2)

A few more bumps and a smooth patch

noreply@blogger.com (Paula Perry) — Sat, 25 Sep 2010 19:49:00 +0000

Picking up where I left off . . .

Sunday: It was the usual hassle before bedtime. During the night, the machine started making a different, louder sound than before, which made Christian wake up and ask, "What's that horn sound?" Jackson was hanging his head off of the bed so he could lie on his side. With the mask, he can only sleep on his back, his least favorite position. Nobody could sleep with the horn sound, so the mask was removed, and they all got a few hours of sleep.

Monday: Angy called the medical supply company yet again. She discussed the situation with the owner and found out that the technician who had been to their house didn't have a clue about what she was doing or saying. So they made an appointment for Jackson to come in on Wednesday for a fitting by the owner. It was a restful no-mask night.

Tuesday: No mask . . . zzzzz

Wednesday: Jackson was upset on the drive to the medical supply company, and he cried something awful during the fitting. But, thank God, he ended up with a smaller mask that doesn't jam into the inside corners of his eyes. As they were preparing to leave, one of the employees said, "Look at him. He's so happy." Angy turned around to see her son's megawatt smile. One good thing about the mask is that when it comes off, Jackson's on a mountaintop.

That night, Darrell put the mask on Jackson and lay with him. Jackson shook nervously for a while, but then fell asleep without crying. He stayed asleep all night, and the machine stayed quiet. Angy still didn't get uninterrupted sleep because she'd wake up and wonder if the machine was still working because she wasn't used to the quiet.

Thursday: Another good night. Although Jackson starts his "no mask" mantra when he gets home from school, he doesn't cry anymore when it goes on and he goes to sleep fairly quickly, then sleeps soundly through the night.

And Jackson's been in a great mood the last few days. He seems to have gotten past the anger, and now that he's sleeping well, he probably feels better than he ever has in his life.

THANK YOU, JESUS! And thank you, dear ones, for your prayers.

A bumpy road

noreply@blogger.com (Paula Perry) — Mon, 20 Sep 2010 01:15:00 +0000

You probably expected to hear an update sooner than this. I certainly expected to provide one sooner. But who would have thought it would take almost two months to get Jackson's CPAP mask and machine? I'll skip the frustrating details of the delays, mistakes, and miscommunications, and just recap this past week when Jackson finally got the device.

Tuesday: Knowing what was in store, Jackson kept finding reasons to delay bedtime. Around 11:00, Darrell tried to put the mask on Jackson, who began crying hysterically. So Darrell put the mask on himself to show Jackson it was OK, and then Angy did the same. She said the amount of oxygen blasting through it took her breath away. They tried to explain how the mask would help him sleep and make him feel better, but Jackson wasn't having any of it, so Darrell finally had to force the mask on.

While my poor boy lay on the bed shaking, Angy lightly scratched his chest through his T-shirt, and she and Christian sang "Old MacDonald." Jackson calmed down enough to start requesting which animal he wanted them to sing about next, although it was harder than usual to understand him with the mask on. At one point, Jackson faked having to use the restroom just to be able to remove it.

The three of them slept in the same room. Christian kept saying encouraging words to his big brother, even after the lights were off. "You're doing good, Jackie." "It's gonna be OK, Jackie." What a little sweetheart.

During the night, the low hum of the machine turned into a shrill whistle. Darrell searched for answers on the Internet and determined it was from all the drool Jackson was producing that had nowhere to go.

Wednesday: Despite Jackson's repeated pleas of "no mask" during the evening, the mask was forced on again. After everyone was asleep (except night-owl Darrell), the machine started making an awful noise that woke them up. Through another Internet search, Darrell determined the mask apparently wasn't fitted properly.

Thursday: The technician from the medical supply company couldn't come until Friday, so Jackson got his "no mask" wish for one night. It was a peaceful, restful evening in the Davis household. That is, as peaceful and restful as possible with a special-needs 12-year-old, a three-year-old who never stops talking or moving, and a one-year-old who's walking now and trying to keep up with her two brothers.

Friday: The hysterical crying began again when the technician did a semi-fitting, and later Darrell had to make some more adjustments amid more crying. When he was finished, Jackson clapped and smiled, looking very pleased with himself, and then researched CPAP masks on the Internet (wonder where he learned that). Darrell and Angy were hopeful things would go well that night. They were wrong.

After Jackson lay in agony with the mask on and fully awake for a couple of hours, they allowed him to get up. When Jackson finally went to bed at 3:00 in the morning, they were too tired to deal with it, so he got a partial no-mask night.

Saturday: I tried giving Jackson a little pep talk on the phone about the benefits of wearing the mask. Angy said he had a strange look on his face while I was talking. He didn't tell me goodbye, just handed the phone back to Angy. Maybe Jackson feels like we're all against him.

That night wasn't any better. Jackson lay in bed crying with the mask on for a couple of hours. At last he fell asleep for about seven good hours of rest, but it didn't improve his mood. Angy said he's been angry all day.

If my little darlin' understood that the alternative is a permanent tracheotomy, maybe he'd be more receptive to wearing the mask. But for a boy who hasn't ever been able to tolerate so much as a bandaid, that obtrusive, restrictive contraption is a lot to ask.

Only God can make the situation better. I pray that He will.

"He keeps me singing as I go"

noreply@blogger.com (Paula Perry) — Sat, 24 Jul 2010 19:08:00 +0000

Jackson and Darrell spent Tuesday night at the Texas Children's Health Center—this time to fit Jackson with a sleep mask and determine the right amount of oxygen to pump into it.

I don't know why I thought he would be wearing only the mask (wishful thinking I guess), but he was outfitted with all the electrodes and restrictive paraphernalia as during the sleep study, plus the mask, which was much bigger than I anticipated. How pititful is this photo? I can't imagine trying to sleep with all that on.

After repeated adjustments of the oxygen level throughout the night, the correct level was finally determined and Jackson slept peacefully for a few hours. When he awoke, with the mask still on, he started singing "Old MacDonald Had a Farm." I'm sure he was really glad that the night was over. "E-I-E-I-O" indeed.

Williams kids have a profound affinity for music. As a baby, music would soothe Jackson when nothing else could. As a young child, he would listen with tears in his eyes to Ray Charles' soulful rendition of America, the Beautiful. And Jackson's musical tastes have no bounds. He likes it all!

What really thrills my heart is that he recently began singing. Up until two years ago, Jackson's vocabulary was limited to "yeah" and "huh." Now he communicates verbally, although he's not easy to understand. I sometimes have to ask him to type on the computer what he's trying to tell me. But when he's singing a song I know, I can tell by the melody alone. And his pitch sounds perfect.

In a store with Mema the other day, Jackson loudly sang "Ring of Fire" by Johnny Cash. She knew what he was singing not only by the melody, but by his fairly clear pronunciation of "down, down, down," which he accompanied with hand gestures.

While spending the night with me Thursday, Jackson was on the computer for hours. He searched for body sprays and watched an odd assortment of videos. The whole time, he kept a separate browser window open in the background with songs playing that he sang along with intermittently. After "Ring of Fire" played about 30 times, he swtiched to a cartoon Mickey Mouse Club song. I was sitting on the floor next to him and reading, and realized that I couldn't understand any of the words he was singing. Looking up, I discovered it was the Norwegian version of the song! What an amazing child God gave to us.

Jackson typed the word "mall" and pointed to it, so I said I would take him in the morning. The next time I looked at the computer screen, I saw a Google map to Willowbrook Mall. I assured Jackson that I remembered how to get there and that we would go the next day. The first word he said when he woke up was "mall."

In three differerent stores, Jackson covered his hands and arms with nearly every tester spray they had. He often broke into song and even danced in one perfume department where the piped-in music was loud. Getting into the swing of things, I mixed a few scents on my body as well and occasionally accompanied him on the chorus of "Ring of Fire."

On the way home, we stopped at the grocery store to get snacks. My sense of smell had become desensitized, so I didn't realize how we might attract more attention than usual. When I ran into a dear friend and we hugged, she commented on how very sweet Jackson and I smelled. That had to be an understatement. I explained to Bea why we smelled like we did, and if any Kroger shoppers who were there that day happen to be reading this, I apologize for what was surely an assault on your sense of smell.

During the night, I had woke up at 4 a.m. to find Jackson sitting in the bed and rocking. I rubbed his back and talked about how he'll sleep a lot better when he gets his mask, but Jackson adamantly shook his head no. The ENT doctor will write a prescription for the sleep mask next week. Please pray that my sweet boy will accept it.

Although he's had a lot to endure, Jackson has always seemed to have a song in his heart. I'm so thankful that the songs are on his lips now and we can hear them. In God's creation of Jackson, He gave him a special love for music. And in God's care of Jackson, He continuously gives him reasons to sing.

Everyone who knows Jesus has reason to sing. To hear the music, though, we've got to keep our focus on Him. Like the classic hymn says, "Jesus, Jesus, Jesus/ Sweetest name I know/ Fills my every longing/ Keeps me singing as I go."

I used to wish that life was like a musical. I realize now that with Jesus and Jackson, it actually is one.

Another hill to climb

noreply@blogger.com (Paula Perry) — Sat, 26 Jun 2010 17:57:00 +0000

Darrell reported that the only real difficult part of the sleep study for Jackson was the prep work. Dozens of electrodes were attached all over Jackson's head and body, and each spot where they were attached had to be shaved of the top layer of skin first. It was a long and trying ordeal, and worst of all, the medical staff wouldn't allow Jackson to rock back and forth while they were doing it. Sheer torture.

I didn't know what to expect, and when I saw these pictures Darrell snapped with his phone, I was shocked.

Considering that Jackson won't normally tolerate a bandaid, is it anything less than a miracle that he endured all these constrictions, including a pulse monitor on his finger (which he absolutely hates), and slept peacefully through the night? Yes, the Lord caused a deep sleep to fall upon him.

For those of you who knew about it beforehand and prayed for Jackson, isn't it a special joy that God allowed us to share in what He was doing?

The next morning, Darrell learned that the technician who monitored the sleep study had advised that Jackson be taken immediately to the emergency room. Instead, the nurse contacted the ENT (ear, nose, and throat) doctor, who decided not to send him to the hospital and just see him at the scheduled appointment the following morning.

Jackson has never been a good sleeper, and now we know why:

He has a severe case of complex sleep apnea, which is a combination of the two kinds of apnea: central (brain related) and obstructive (body related).
If a child has just one incident of sleep apnea in an hour, treatment is required. In one hour, the technician observed Jackson having 16 central incidents and 80 obstructive incidents, a total of 96. (No wonder she wanted to send him to the ER.)
This makes Jackson's already-stressed heart work harder and contributes to his high blood pressure.

Here are the treatment options:

Removing his tonsils and adenoids won't help with the central, but will help a little bit with the obstructive, so that surgery will be scheduled.
Jackson will also have to sleep—for the rest of his life—with a continuous positive airway pressure (CPAP) device, consisting of a machine pumping oxygen into a mask strapped to his head. (Of all things for a boy who hates having anything on but comfy clothes!)
If Jackson won't tolerate the mask, there's a permanent solution, but not a desirable one—a tracheostomy. This is different from a tracheotomy in that the hole in his throat would be permanent and be closed off with a cap during the day. (Please, dear God, not that.)

Praise the Lord that we're getting some answers. Although it's scary to find out just how precarious and fragile Jackson's condition is and has been all these years, it's comforting to know that God has been keeping his little heart beating against all odds.

We'll keep praying and expecting miracles, including that Jackson will accept his oxygen mask.

My soul, wait thou only upon God; for my expectation is from him. (Psalm 62:5, KJV)

Another matter for prayer

noreply@blogger.com (Paula Perry) — Tue, 22 Jun 2010 22:08:00 +0000

Jackson didn't have any tests this week as the ER doctors indicated. His cardiologist just doubled his morning dose of medicine (the ER doctors had already doubled his evening dose).

Kids with Williams syndrome often have high blood pressure because all of their arteries can constrict. So while we're assuming that Jackson's BP will probably always be higher than average, we're praying that the doctors will prescribe the right medicine in the right amount to keep it from getting dangerously high again.

Jackson also suffers from what is probably sleep apnea, a potentially serious disorder. He sometimes wakes up throughout the night unable to breathe and often making dreadful noises. Then he stays sitting up in bed, just rocking back and forth. Those are long, tough nights for him as well as Angy and Darrell.

Tomorrow (Wednesday), Darrell and Jackson will be spending the night at a Texas Children's Health Center near their home for a sleep study. Please pray that God will give Jackson the grace and endurance to handle whatever is in store for him during this unwanted sleepover.

If the doctors confirm that he has sleep apnea, the first step in treating it would be to remove his tonsils and adenoids. If that doesn't work, the next step would normally be for him to sleep with a freaky-looking mask that pumps oxygen, which of course, Jackson would never do. (You know what we'll be praying about later.☺)

Thank God for prayer! He's going to take care of Jackson regardless, but prayer gives us the blessing of participating in what God is doing in Jackson's life. Prayer also gives us strength, comfort, and peace because we can pour out our heart before the omnipotent Creator of heaven and earth and all that is in them, knowing that He listens with understanding and responds with compassion.

Besides, we're commanded to pray—and not worry!

Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus. (Philippians 4:6–7)

Thank you for joining us in praying for our precious boy. It truly does make a difference.

High numbers

noreply@blogger.com (Paula Perry) — Sat, 12 Jun 2010 16:29:00 +0000

Our "baby Jack" is now 12 years old! Unfortunately, however, that's not his only number that keeps climbing. Jackson's blood pressure was dangerously high yesterday, staying around 215 over 114, so Darrell took him to Texas Children's emergency room.

Jackson had to endure his dreaded x-rays again, but praise God, the stents are still in place. Other than that, the needed tests couldn't be done because they require fasting and Jackson had eaten in the afternoon. So the only other thing the doctors could do was administer a double dose of blood pressure medicine.

Darrell said that Jackson was very upset about being at the hospital, but praise God again, he was released last night and will have the tests as an outpatient next week.

In April, Jackson began taking a double dose of his medicine every morning and evening, and now he'll be taking a quadruple dose in the evening. With the stents in place and the large doses of medicine, it's a mystery why his blood pressure keeps climbing. Please pray that our omniscient God will reveal the answers that the doctors are seeking.

And now for the birthday that was not the norm for a boy turning 12 . . . It started out with a typical birthday meal of pizza at Double Dave's, but then we granted Jackson's birthday wish by taking him to Victoria's Secret.

I've mentioned previously his obsession with body spray, and that's all he wanted for his birthday. He researches sprays online and had decided to add some from Victoria's Secret to his ever-expanding collection.

Jackson was so happy in that store. He selected six sprays and examined many others to make sure he was satisfied with his selection. Angy and I were enjoying watching him and were snapping pictures (as everyone does at a child's birthday celebration). It wasn't until later when I was viewing the pictures that I noticed people in the background staring at us.

They could have no idea how much it thrilled us to see Jackson bouncing happily out the door holding his pink shopping bag from Victoria's Secret. We knew he had gotten his heart's desire. Now if we can just teach him moderation in using his sprays!