The complete lowdown on my son

I apologize for how long it’s taken me (about a month) to post a full recall on what’s happened with my son Sean since August.  Thank you to all of the hundreds of people who have been praying for him or sending your best wishes, from Oregon to Florida and from Scotland to South Africa to New Zealand.  I can’t speak for him, but I know how much my wife and I appreciate it – and I have zero, ZERO doubt that those prayers have been the difference between life and death for him.

But boy, has it been hard to put fingers to keyboard and write about it.  I’ve literally dreaded going back over the eight months of worries and fears, grief and dashed hopes, struggles and stresses and rages and work, work, work, work to try and write something relatively coherent about the whole situation.  A hundred times I’ve pushed myself to get it done, because I want you to know how it’s been and how it’s going … and a hundred times my soul drew back.

But I want you to know, and if you’re new to this blog I want you to join in the fight too.  So (deep, cleansing breath) here goes …

Sean began acting strangely on Friday, July 31, 2009.  He wasn’t hungry and had no energy, both very unusual for him.  We thought he might be dehydrated and did our best to get some fluids in him, but he kept getting worse.  We did our best to nurse him through the weekend, but he kept going downhill; by the time we finally panicked and took him to the ER on Monday, he was sleeping most of the time and losing the ability to walk.

The ER trip didn’t help much – they gave him an IV of fluids and sent him home, saying it was probably a viral infection and he’d be fine in a few days.  But he wasn’t – soon he couldn’t even stand and could barely speak, and nothing we did (fluids, Pedialyte, lots of hugs) helped.  The following Monday – we’re up to August 10 now – we couldn’t wait any longer, and took Sean to a different hospital.

By that evening, he was on a helicopter to Children’s Hospital in Oakland, 70 miles (100 km) away.  And we were in a car right behind.

The initial diagnosis was West Nile virus, pretty serious but one he would likely recover from quickly.  My wife Nina stayed with him until Thursday, but then had to come back to Stockton because her job (she’s a teacher) started for the school year on Friday.  At that point, I took over in Oakland for the duration. CHO has a “family house” for relatives of patients, so she moved out and I moved in, for what we still hoped would only be a few days.

But it wasn’t a few days, and it wasn’t West Nile.  And that’s when the real ordeal began.

Over the next month, the diagnosis changed to acute disseminated encephalomyelitis (ADEM), very serious.  A full round of therapies began – physical, occupational, speech, pharmaceutical, even respiratory – as the staff at Children’s Hospital began trying anything and everything to stop the deterioration.  By August 21 Sean had lost the physical ability to do almost everything except breathe and sleep.  And yet all of us could tell that he was mentally still there by the way he watched things and reacted to those around him.  And meanwhile I got to watch as my happy, lively son, who a few weeks before was all ready to start kindergarten, became trapped in his own body, a 50-pound rag doll with an active mind chained up inside.

There were steps forward in that month, but every one seemed to be accompanied by about five steps back.  He’d get the movement back in his arms or head, or start showing facial expressions … and then lose the ability again.  Soon the ADEM diagnosis was thrown out, and the doctors began getting desperate, checking him for mono, for seizures, for some strange brand of walking pneumonia, for Epstein-Barr virus.  Three MRIs were done (two brain, one spinal), but none of them clearly pointed to what was happening.

On September 8, five and a half weeks into the ordeal, some tests came back from Baylor University Medical Center in Texas, and we had a firm diagnosis.  It was worse than we’d ever imagined.

Leigh’s disease (click here for details) is a rare neurometabolic disorder caused by a mutation in the mitochondria of a person’s cells.  Basically, it causes the body’s immune system to go haywire and start attacking the central nervous system, starting with the motor control centers of the brain.  Usually it starts manifesting in the first two years of life; for it to show up as late as it did with my son is even rarer.  And rarer still are those who survive long with Leigh’s – the recovery rate is effectively zero.  There is no cure.

And at that point the folks at CHO began preparing us (mostly me, but Nina and our daughter started coming to Oakland on weekends) to take Sean home.  They installed a gastric tube for feeding him formula, replacing the feed tube going to his stomach from his nose.  But other than that, there was little they could do except wish us the best and send him home to live out the rest of a short life.

The “few days” in Oakland ended up being a month and a half — I brought him home on September 23 – and for the next month there was no good news.  He seemed to begin losing ground almost immediately after coming home – couldn’t smile, move his head, or even poop without help.  Since Nina had a job, the brunt of his care fell to me, but it was wearing for both of us.  We were doing the best we could to administer his “medications” (really just vitamins and enzymes that are supposed to help, plus ranitidine – Zantac – so he keeps them down), keep him fed and comfortable, give him things he enjoyed (reading stories, turning on PBS Kids).  But sometime in early October my wife and I both began emotionally preparing to let him go to Heaven if that’s what God wanted.

(This is still tough to write.  I’m tearing up as I type this.)

Meanwhile, since Leigh’s is genetic (and since all mitochondrial problems come from the mother’s side) the local mitochondrial experts at Stanford University wanted to run tests on Nina and both our kids.  In mid-October we went out to Palo Alto (west of San Jose, about 90 miles/150 km away) so they could give blood samples and the experts could get a good look at Sean.  They didn’t have any more good news than the folks at CHO did, and there was more bad news when the test results came back a couple of months later.  They confirmed the Leigh’s diagnosis, and found that both Nina and our daughter were carriers, and should not reproduce for fear of spreading the mutation.  So not only were we looking at losing our son, we had lost any chance at someday having grandkids, save through adoption.

And then, around the end of October, something strange began to happen.  Sean started getting a little better.  And this time, he didn’t stop.

First, it was some purposeful movement of his arms and legs.  Then he started turning his head.  He began regaining the ability to swallow.  He started putting on weight, enough that we had to reduce the amount of formula he received each day so the gastric tube insertion site in his stomach didn’t disappear.  Every so often, he’d even manage to roll out of bed – and land with a thud on the floor, as he couldn’t catch himself, but still.

At his check-up at CHO on November 22, Sean thoroughly impressed the doctors with how much progress he’d made – remember, there was a good chance that he’d be dead by then, as far as they knew.  In December, he began weekly physical therapy sessions here in Stockton at the Hoover Medical Therapy Unit (MTU), part of the local school district, and received a custom wheelchair (a gift from the state of California).  More recently, his gastric tube hookup has been replaced with a smaller version that allows him more movement, and he’s begun wearing AFOs, custom orthotics for his feet and ankles to help him retain muscle tone there.  (The AFOs, interestingly, are somewhat similar to the braces Nina wears to help her with her CMT.)

So where are we, as of early April?  Sean can sit up for short periods by himself with his head up straight, move his arms and legs (a lot), grip objects and eat small amounts of solid food, although we still use the formula and an electronic feeding pump for his regular meals.  He can turn to look at things (or turn away), follow objects with his eyes and head, turn onto his side or stomach from his back (though it takes him a long time and is clearly difficult), and rarely has any problem pooping.  He can smile a little, and shoot a dirty look with the best of them.  He’s regaining movement in his jaw, which leads to occasional tooth-grinding but is still a positive sign.  Given assistance, he can do sit-ups, stand, and even walk a few steps.  Physically, he has the skills of a seven-month-old except for crawling and sucking; it’s rather like his muscles have had to start over from scratch.

And maybe that’s part of why it’s so tough for us.  His therapists are thrilled with his progress, which is apparently pretty extraordinary in their experience.  But they have only known him since a little before Thanksgiving – they never saw him when he was the Giggle Prince, running around like a crazy person, laughing up a storm and excitedly learning his letters and numbers.  Nina and I remember him that way, though, and now we’ve spent almost eight months without him being able to laugh or say a word, unable to walk, trapped by this disease and warped into a helpless – and largely silent – baby.  Every day that sword gets driven into our souls all over again.  As much as we rejoice in what he’s gotten back, it seems so thin compared to what he has lost.  What we have lost …

Since Sean was still in the womb, my wife and I have prayed for him a specific “crafted” prayer, written out and everything.  It includes everything it seemed God was guiding us to ask Him on our son’s behalf.  Here’s the text:

Father, we entrust our son Sean to You.  May he grow up big and strong, both physically and spiritually.  Fill him with your Spirit and the desire to conform to Your will.  May he be well-read and well-taught, with a passion for learning about You.  Give him a peaceful personality, able to weather the storms of life with acceptance and joy.  Order his life as a testimony to Your grace and Your faithfulness, and may his days be long and fruitful wherever You lead him.  And thank You for the chance to see up close Your work in and through him.  Amen.

We’ve prayed that with him and for him pretty much every day of his life.  We believe that this prayer contains God’s will for his life.  And now we’re trying to reconcile the contents of that prayer with what has happened to him.

We don’t know how it fits together.  But we know our God, and that He has a plan that will bring good things out of all of this, including good things for Sean.  It’s up to Him to work out how.

So many people have told me over these months, “I don’t know how you do it” or some variation thereof.  My stock answer has been, “it’s not like we had a choice.”  After all, he’s my son!  Maybe other people can walk away from their children, but I can’t and still live with myself.

And yet … I know what they mean, because if you had told me at the start of last summer that I’d have to carry this burden (and my mom’s death, and changing banks, and my wife’s work headaches, and, and, and …), I would’ve been unable to figure how I could survive it.  Terrible as it may be to say, it would probably have been less stressful on the rest of the family if he had died, rather than dealing with all the day-to-day responsibilities of caring for him.  (Sometime, maybe next week, I’m going to do a post with a diary of a day taking care of him – you would be amazed at all that’s involved!  I know the social services people don’t believe me …)  All of us, even our daughter, are more fried than you can imagine – unless you’ve gone through the same thing or worse.

And yet we’re glad Sean is still with us.  Not for his sake – we’re pretty sure he’d be much happier in Heaven, as would we all – but for ours.  Deep down, under this flesh that is currently so uncooperative, is our little boy.  We care for him and we worry about him.  Sometimes we smile, and sometimes we sob.  And all the time we’ve learned to be thankful for every day he’s with us, for every ability he recovers, for every smile-let and every squeeze of the fingers.

No matter how long it takes for him to heal, or if he never heals, he’s still my son, and he always will be.  And I love him.  On such commitments are lives built, and miracles wrought.

Please pray for Sean and for us, for God’s will to be done.  Whatever that involves – because as one of Sean’s favorite videos states, His way is the best way.


4 Responses to The complete lowdown on my son

  1. Chris says:

    Ray and Nina,

    We would like to add our amen to the prayer you have prayed over him from his birth.

    “May he grow up big and strong, both physically and spiritually. Fill him with your Spirit and the desire to conform to Your will.”


    Chris and Maureen.

  2. Mary-Alice says:

    Iam praying Edmund.
    I just send my love to you all.
    Your Kiwi friend Mary-Alice(Hayseed)

  3. Philippian says:

    Dear Ray and Nina,

    You are all in my prayers. That was a beautiful prayer you composed for him.

    May the Lord bless you all.


  4. […] (Yes, there will also be more combos that fail, which is bad – take it from someone who may be experiencing that firsthand.  I’m trying to look on the bright side here …)  The more improved combinations, the […]

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