Jacob Back in the Hospital, and Not Dying

Is it me, or do the doctors at the hospital look like teenagers?

I’m not talking about the volunteers or the techs/nurse’s assistants.  I keep meeting these people who look like they should be taking highschool classes and going to seminary dances, and then they say things like, “Hi, I’m the resident!” or “Hello, I’m the intern”.

I’m certainly not disparaging them or saying they’re doing a bad job.  They’re great.  But it must be saying something about how old I’m getting.

Playing Minecraft with his bro

Anyway, this time it seems like he’s had more issues with his guts being all plugged up, and not so much trouble with his lungs.  He’s been pretty cheerful through the whole experience, except for the day he had to get the catheter and the enema.  I’m glad I wasn’t up here with him when that happened.  Yeesh.

The other day, when I came up to visit, the call came out over the intercom for a Mormon Elder, which I am.  That meant that someone needed an Administration for a Blessing.  I went and assisted (it takes two), and as I met the family, and listened to the prayer being offered, I realized that these parents were in fear for the life of their child.

We come up to the hospital a lot.  Appointments, clinics, a clean-out once or twice a year, even an occasional surgical procedure, etc.  These things are important, and very serious. But it has been a very, very long time since I have felt total fear that my child would die.

I remember one time, when we were in for a cleanout, he had a bad fever, and he went into a full-on grand mal seizure.  They gave him anti-seizure medicine, and he stopped breathing.  They had to get the breathing bag on him three times.  Alarms were going off and the staff got real focused and serious for about a half hour until he got stabilized.  I was terrified.

And, of course, when he was born, two months early, and whisked from the first hospital up to Primary Children’s the first time (on Life-flight, no less), with a ruptured intestine.  We were scared for his life, then, too.

In the special-medical-needs world, we often find ourselves in situations where, at least on the inside, we look at a family and say, “I’m sure glad I’m not in their place”.  We often don’t realize that they’re saying the same thing about us.  But this time made me remember times that were scarier, and made me more grateful that these hospital stays, while being important and serious, are not because he’s at death’s door.

At least not this time.

Primary Focus

Jodi and I recently had a remarkable opportunity as members of the Church of Jesus Christ of Latter-Day Saints.  We were contacted to participate in a focus group with the general presidency of the Primary on how to better serve children with disabilities, handicaps, and special needs.


For you non-mormons, let me clarify.  In the the Mormon church, the “Primary” is the auxiliary that helps teach the children’s classes during the time of the Sunday meetings when the adults and the youth (teenagers) have their own Sunday School and other classes. I went through it myself as a child, and at various times in my adult life, I’ve been a primary class teacher.

So, this was an initiative by the “General President” of the Primary.  That means the lady in the office building in Salt Lake who is in charge of the Primary program over the whole world.  That’s right....  Her calling is to be responsible for the religious education of every Mormon child in the world.  It’s a big job.  She has been known to speak from time to time in the Mormon Church’s General Conference, giving advice and inspiration to the world’s parents.

So, I was particularly touched to hear that she had contacted a number of parents of special needs children, and some general primary leaders from some individual wards, to participate in a focus group so they could learn how to better serve the special needs children in the world’s congregations.

It was a wonderful experience to be there with her and her two counselors, and to share our experiences.  My only frustration with it was that our session only lasted an hour.

There were many parents there that shared wonderful and frustrating experiences.  Much of our own experiences in church with Jacob have been wonderful.  We actually have a very supportive ward.  Some teachers and leaders have been better than others, of course, but by and large, it’s been great.  They’ve really tried to include Jake as best they can.

Apparently, the Primary Presidency is working on an addition to the Church website, in the Primary wing, to aid people in working with children with handicaps, disabilities, and other special health-care needs, and their families.  We were asked how to make it more useful, and more accessible.  In the process, I also learned that there are a lot of resources available to wards and families at the main church website, at http://disability.lds.org.  I didn’t know, for example, that a ward or stake can actually call a disability specialist as part of their ward or stake roster.

The biggest contribution that a local ward can make to a child’s well-being is to talk with the parent and to spend time getting to know the child.  Every child is different, and a handicapped or special needs child moreso.  What works with one autistic child will not work with another, even though they both carry the same diagnosis.  Cerebral Palsy looks different in every child who has it, and with Cystic Fibrosis, like Jake has, it gets even more complicated.

In the end, I was just left with an overwhelming feeling of gratitude that the Church, at such a high level, recognizes the needs of families like ours, and kids like Jake, and is trying to serve them.  Really, the best way for them to serve us is more on a local level, but often local leaders are not as aware of what to do.  Often top-down instructions and resources are a great way to go.

It was also kinda funny to learn that the way the ladies talk in conference is also how they talk in real life!

Jake and the Utah State Legislature, Part II

Here’s a clip of Jacob’s testimony before the Utah State Legislature’s Social Services Appropriations Subcommittee:



So, there’s more to the story, now:

Thursday morning, I got a call from Jodi saying that she’d just been told that on KSL talk radio, Doug Wright had played the recording of Jacob’s testimony before the Utah State Legislature and commented on it.  That was pretty exciting, because it showed me immediately what I’d already known, that Jake’s words were touching people.

Right away, I called KSL and said “I’m Jacob’s father and I was there when he testified!” The screener taking my call, got really excited and said, “Let me call you back in about an hour and we might be able to get you on the air with Doug.”

I waited, and they called back, and we did, in fact get me on the air.  It was fun and Doug was a very insightful interviewer.  Hopefully, all of that publicity will help more people to be aware of the financial plight of the disabled.

One thing I noticed at the Utah State Legislature committee meeting and I tried to bring out in the interview was this:  A lot of the testimony shared that day was by disabled adults talking about how the services that they get from the state government have helped them to become independent, and to get productive, real employment, in the non-disabled world.  One guy I met there was very friendly and personable, and he and I got to talking about wheelchairs, because his is the same brand as Jacobs.  When he testified, he talked about being able to go to work as a software engineer.

Another guy has a degree and works in the Disability Law Center.  A lady there told about her job in an office in Salt Lake.

My point is that this is not a collection of takers and leeches.  These are now productive, employed, tax-paying adults.  Our great society has invested in them, and now they are contributing to society in meaningful, practical ways.

Someday, Jacob will be out in the workforce.  I can already see ways that he’ll be able to contribute, and he’s looking forward to a long and productive life.

As Jacob says, “What am I worth?”

Jacob and the Utah State Legislature

Every year, when the Utah state legislature meets, I lose sleep.  It has a lot to do with what might happen if the programs that pay for Jacob's medical care get cut or removed.  Every year, it seems, they want to slash the budgets.

I know that it's tough.  Everyone wants their particular slice of the pie, and the poor legislators have to look at the big picture and decide who gets what.  I'm not being sarcastic when I say, "poor legislators", either.  I mean, really, that's gotta be a tough job.  Whatever you decide, someone will be mad at you.

But that's not really what I wanted to write about today.

I wanted to write about Jacob.  Every year, we try and get him signed up so that he can testify before the Social Services Appropriations Committee.  He's been doing it for several years, now.  Last year, unfortunately, we didn't get him up to the Capitol in time, but this year, I did.  He and I both testified.

He and I were second and third on the list, respectively.  When it was his turn, he was firm, confident and spoke clearly.  He talked about his illnesses, and conditions.  He asked the legislators to think of him, when making the budget cuts, and ask, "How much am I worth?  How much are my friends worth?  How much is my family worth?" Then he flashed his Jakie smile and was done.  The chairwoman of the committee thanked him very much for being there and sharing his point of view.

How many 13 year-olds can stand up in front of 20+ powerful adults and address them with calm and confidence?

Then I stood up and did my two minutes of grown-up blah-blah-bah.  And then they were on to other adults.  There were some great stories told, as some of them talked about how State programs had helped them get through school and find meaningful work and independence.  There were disability professionals with statistics, charts, and graphs.  I'm just very proud to have Jacob help them to see the very human side of the budget decisions.

Fairness, Cystic Fibrosis, and Cerebral Palsy

So, Jake’s been sick a lot this week.  It’s been both bad and not so bad, depending on the day.  He’s been fighting with diarrhea several days, and even though his stools have been pretty solid today, he’s still had a lot of GI wooziness.

With Jake having Cystic Fibrosis, we have to take all of this very seriously, just like we do when he gets bugs in his lungs.  It can be pretty bad for him if he catches something fierce, even in his guts.

So, he’s staying home from church tomorrow.  This is kinda frustrating, because it’s a big deal for his older brother.  Brendon gets to speak in church.  In Mormon churches, members of the congregations preach the “sermons” each sunday, though we call it “giving a talk”.  Often they’ll ask the youth of the congregation to do a short one before the adults speak.  It’s really good for them, and it’s a big deal for a teenager to do.

But, Jake and one of us of the parents will have to miss it.  It turns out that I get to be the lucky one to go, because I sing in the choir, and we’re also performing.

It’s kinda tough to split up the family activities for a day, but that’s what we’ve got to do.  Fortunately, Brendon understands, and hasn’t complained too much.  He does, however, sometimes gripe about other aspects of the inherent unfairness of Jacob’s condition.  Jake misses a lot of school, and Brendon would sure like to do that.  Jake, because of his Cerebral Palsy, can’t do any household chores, so more of that falls to Brendon.

We try, as parents, to find some kind of balance, for both of them.  But, really, there isn’t a balance.  It just IS, and we all have to deal with it in our own way.

More Days in the Life with Cerebral Palsy

So, a lot of changes have happened in the December, and many of the focus around Jacob turning 12.  In our church, 12 is a big deal, especially for a young boy.  For either gender, it means coming out of the kids program, called “Primary” and into the youth program, called “Young Men” or “Young Women”.  They do a lot of activities, both separated and together, on Tuesday nights in our ward.

So, Jacob went to his first youth meeting last night. 

It’s hard to me to think of him as a pre-teen.  In my eyes, he’s still a cute little kid.  Of course, when I’m hefting him in and out of bed, or into his wheelchair, I’m painfully reminded every time that he’s not a baby.  But he’s still got that pudgy face, and that cute voice.  Both he and his brother are starting to outgrow the Disney Channel.  I’m actually quite happy about that.  There’s only so much Selena Gomez that a grown-up can stomach.

Another big part of turning 12 for a young Mormon boy is getting the Aaronic Priesthood.  He’ll become what’s called a “Deacon” and have duties to assist in the church.  It’s a rite of passage comparable to becoming an Altar Boy or a Bar Mitzvah.

One of those Aaronic Priesthood duties will be to pass the bread and water at the Sacrament in the meetings each week.  His cerebral palsy will require some adaptations.   We’ll be installing a desk/tray on his wheelchair so that he can carry the water and bread trays to the rows of pews.  His youth leaders had all of the boys do a practice run with him last night, so they’re all better prepared to know what to expect.  I really appreciate the extra effort his leaders and putting in to help him fit in.  I think it will be the first time in my life that I will ever have seen a person in a wheelchair pass the sacrament.

With Cerebral Palsy there is much that Jacob struggles with, and much that he just can’t do.  I’m excited to see that he keeps trying to figure out what he can do.

The Hero Returns

Jacob is back from the hospital now, after having his Cystic Fibrosis cleanout.  It ended up not being quite a full two weeks this time, which was nice.

Jake is growing up.  He’s a few days under 12, now.  During this hospital stay, he started to noticeably engage more in the talk with the staff.  In the recent past, he’s been involved in some opportunities to speak to the nurses, particularly the student nurses, and teach them how to better deal with children patients.  He told them all to talk more directly to him, as the patient, instead of just talking about him with the parents, while he’s in the room.  

I think that, this time around, that this experience has given him a lot more confidence in dealing with the nurses, the techs, and even with the doctors.

For example, when the Cystic Fibrosis pulmonologist was in, and they were talking about just how long to keep him in, he piped up and said that he wanted to do as much of the full cleanout as necessary, because he “didn’t want to have to come back in a few months!”  The decision was made.

A couple of days later, talking with the same doctors, they said he was well, and sounding clear in his lungs, and they asked him if he felt he could go home.  He was excited and said that he definitely wanted to.  They were including him in the decision making process.

He’s a sharp kid.