Friday, December 15, 2006

In unforeseen events, let me not forget that all are sent by You

In one traditional morning prayer, we pray a prayer like that forming the title of this post.

I have not been posting much lately . . . the Nativity Fast is generally a break from blogging for me, and I really have little to say. No one visits here much, except a few good fellow bloggers and brethren whom I've come to respect, so this post is simply to jot down an event, a happening, for my own remembrance and for any who might stop by, and to give praise to the Holy Trinity, Father, Son and Holy Spirit for the small miracles in life.

We have had some new medical information about my youngest son. He was born with hypotonia (low tone - floppy) and couldn't form a good suck-swallow to nurse or bottle feed. So he had a Naso-gastric (NG) feeding tube for a while, then a gastric feeding tube (G-tube) for a while. There were no guarantees on whether he would ever be able to eat solids, or to sit up, or walk. Each milestone is a small victory. He finally gained enough strength to bottle on his own, was finally able to sit up on his own by about 1 year and to walk by about two years with a walker. He quickly gave up the walker and careens about in a dynamic balancing act that is a wonder and a bit of a fright to behold, one which is helped by the use of leg braces to support him.

In another time, he would have perished and been marked down for 'failure to thrive' - if he and mother would have survived the birth, for he was frank breech and may never have been able to be delivered normally.

He was initially diagnosed with 'athetoid cerebral palsy' as a preliminary diagnosis. Rather a 'garbage' diagnosis (look it up), but it was the best we could do. Some doctors suspected a genetic condition, and that CP was just not right, but initial high resolution chromosomal analysis could not find any sufficiently large anomalies to suggest further research, and it appeared he was in no immediate distress, so we adopted a wait-and-see approach, with the thought that technology might rapidly allow some new ways of analyzing his genome for microdeletions or microadditions of sufficient size/etc. to suggest a cause, and perhaps provide insight into more appropriate therapy, etc.

Unfortunately, we also noticed from an early age that no doctor could get a reflex response from him, and that he seemed impervious to pain in his hands and feet. He burned his hands a couple of times with no cries of pain or reaction. While the doctors shrugged their shoulders, perhaps not wanting to think of the implications, we worried. Finally, thanks to my wife's efforts, we pushed to get some further nerve testing done and it was confirmed this year that he has no sensory nerve function in his extremities. No pain, probably no hot, cold, touch. He can probably break a bone in his wrist, ankle, finger, etc., and never know it. He may feel some deep pressure, but holding hands may mean less to him than to others. It's hard to imagine a world where you may never have known the feeling of holding another's hand.

This is extremely rare in infants and children. Maybe there are less than 10 such cases in the United States at present, and it is likely congenital. It probably provides the explanation of the source of his other problems (e.g., some myelinization problem with nerve fibers or the like) rather than CP, although it's possible there is a conjuction of two different syndromes. Some of these syndromes are progressive and eventually can affect autonomic functions (respiration, heart, smooth muscle). Frankly, I have no idea how long (barring freak accident, etc.) I can even expect that my son and I will share life together. Each day dawns afresh and it is a constant reminder of the fragility of life.

All of that by way of background. Our little angel has come a long way and is now attending a normal kindergarten with his peers, albeit with an adult helper that chases him around and helps him so he does not take a nosedive off the stairs or playground equipment at school or slice his finger off with a scissors without realizing it.

And that is where I come to the relation to the topic. Our helper was hard won through the district (we went through about 9 in the first 18 days of school) but he is quite overqualified for the job - has a graduate degree in another field and has done all sorts of things. We learned a while ago that he was leaving for a 'better opportunity' at the new year and we were glad for him, but sad that we'd have to go through the grind again. Then, strangely, that opportunity fell through and he's staying on for a bit with our son, thank God.

My wife called me yesterday very excited because she'd had a chance to really visit with him at a function at school and learned that our son's helper was a missionary in South America, has an advanced degree in Historical Theology, and is preparing to publish a book about 4th Century Theology! He has taught at the collegiate level. Moreover, his journeys and work have lead him to the Orthodox Church and he is preparing to enter the Catechumenate at a Greek Orthodox parish here in our metrop!

So my young son, the joy of my life, is in the care of a brother - one who could be doing very different things of a high order. Instead, right now, he is spending part of his day helping one little child be able to attend school, keeping him safe. I prefer to see this as a small miracle - for some reason we needed to have him and he needed to meet up with my son. We don't know how long we will have this particular sojourn - God willing it will at least be through the end of the school year, but God bless him for his care and service, and praise be to God and let His name be magnified in all things!


Blogger Mimi said...

What a wonderfully small and God-blessed world we live in!

12:00 PM  
Blogger The Scrivener said...

God bless you and your family, Hilarius, and especially your son who has so obviously been such a blessing to you. A wonderful story about his helper at school. You’re in my prayers this Nativity season.

8:59 AM  
Blogger Kamishia Rober said...

hhFirst time on blog...and your story not only brought tears to my eyes, but hope.

My son is only 8 months son is unable to sit with out support, low muscle tone(hypotonia) is on O2(oxygen) but we are beginning to wean him off, he also was feed through and NG tube as well, but Thank you Jesus, that it was short term......and the list goes on...

Truly, turly, I have been encouraged. I know that we serve an Awesome God.

My husband and I are so blessed to have such a beautiful son. I will cotinue to pray for you and family.

Again, thank you!!!

6:26 AM  
Blogger Hilarius said...


Christ is risen!

I am sorry if I missed promptly seeing your post - I don't have e-mail notification on as to when people place a new comment (I suppose I should, but . . . )

Thank you for your prayers! I have been enlightened to so many things through my son that he really manifests the Glory of God (see Gospel According St. John Ch. 9 vv. 1 - 7).

If I can be of any help as an informational resource, etc., please stop by again or give me an e-mail by which I may contact you.

In Christ,

- Eric (aka Hilarius

10:57 AM  

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