Dancing Lights And Beeping Machines. ...: Special Needs Parenting 101. (Part One)

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Status: In Progress  |  Genre: Other  |  House: Booksie Classic
Couple worries and prays over their little boy, who currently is in the PICU (Pediatric Intensive Care Unit); the child has special needs.

Submitted: May 30, 2017

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Submitted: May 30, 2017



*Beep* *Beep* *Beep* *Beep*

*Hiss, click!* *Hiss, click!* *Hiss, click!*

We try to concentrate on the fact that our son is still alive, but it's hard, very hard, right now.  This makes the third hospitalization for Ryleigh Paxton, our son, this year, since January; and it seems this time is the worst by far.  Pneumonia, again.  And a host of other things, including kidney and multiple organ issues due to a bacterial infection that cropped up, and doctors, at best, are not very optimistic about his outcome.  Needless to say, Stan and I are worried, very, very worried.

Ryleigh is our youngest.  He's three years old and has been through more in his short life than what most adults go through in an entire lifetime.  It's just not fair, nor is it right: Ryleigh needs to be running around and yelling and shouting, like any other three-year-old; but because of mitochondrial disease, he will never have that chance.  He cannot walk or talk, and he depends on a feeding tube to eat; he cannot chew or swallow without running the risk of choking.  But such is life with mitochondrial disease; we have learned to live with it and deal with it as best as we can; but it is NOT easy, believe me.

We feel cheated, even angry, that Ryleigh was denied a normal life, a life that our other two children, Reanne Brooke and Ricardo Michael, ages five and eight, enjoy.  He cannot even begin to understand what's happened to him, except that his life is colored with pain and strangers poking or hurting him with needles, and doing painful things to him, and he is unable to commuincate except through crying or moaning or making other noises that clearly display how he is feeling.  It is very frustrating.  Yet Reanne and Ricardo are very good with their little brother; they love helping me with his feedings, changing his diapers or his clothes, putting him into his wheelchair (or taking him out) or putting him to bed, playing with him, and doing anything to make him laugh and make him forget of his problems (even if just for a brief moment).

Ryleigh has been in the hospital for four days; this is going to be his fifth.  Dr. Ajul is his primary physician here; he's been very good at keeping us up to date regarding our son's condition.  It still isn't good news: not much change in his overall status.  But he hasn't really gotten any worse either, so that's good; we'll take any good (??) news that we can get!  The nurses (and Dr. Ajul and the other doctors) have been phenomenal with caring for Ryleigh, and the nurses and other hospital staff have been attentive to our needs as well.  I then call Mom and Pap at home (my folks), and update them on Ryleigh's health; and then I say a quick hello to Ricardo and Reanne; but everytime I get off the phone, I cry, because I miss them so; I want nothing more than to be home with them.  But I can't leave Ryleigh's side, for fear that if I do, something will happen, and when I return, he will be gone, or suffer yet another medical crisis.

The last time I did that, left his side, Ryleigh had a prolonged seizure and ended up in a coma for a week; this was last year.  I honestly thought that I was gonna lose him; yet somehow, through a God-given miracle, Ry pulled through and eventually recovered, which was a huge answer to prayer; but right now, I don't feel like or even want to pray to God; I'm just too upset and worried about Ry. If he survives, great; but if not, then it was not meant to be; but still ... I don't want my little baby boy to die!! I want him to be able to live and have a long, healthy, happy life; no, I want Ry to walk, to run, to sing, to shout, to dance, to be able to feed himself and play like any other three-year-old little boy!!  That's what I want most of all; but this damned mitochondrial disease snatched that away from him!!  

Well, will update you in a day or two; hopefully there will be better news and that he will rally and beat this thing.  But he's just got too much wrong with him; there's the pneumonia, the multiple organ failure, the mitochondrial disease itself, and the bacterial infection; Dr. Ajul hasn't said what the infection really is, but he thinks it may be MRSA or something equally horrific.  Scary stuff. Ryleigh is very sick right now, and it is gonna take a miracle for him to beat this!  Just say some prayers or send well wishes to us; we could really use them!  Thanks in advance!  

~Enid, Ry's mommy.

*End of part one!*

© Copyright 2018 Karen Lynn. All rights reserved.

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