I wish it had never come to this ...

We have been Michael Thomas' primary caregivers ever since his birth seven years ago, and as he grows older (and heavier, not to mention, taller), it is becoming increasingly difficult, especially since I have developed back problems from a car wreck last year and my husband is working two jobs in order to try to pay the mounting bills.

It doesn't help that I am trying to get on disability, only to be turned down.  Have a lawywr representing me, but the caseload is so backlogged it is unreal!

Michael was born four months early.  I developed eclampsia and other problems, so the doctors had no choice but to deliver him earlier than what they wanted.  When born, Michael was less than a foot long in length and weighed a mere 11 ounces.  He was incredibly tiny.

During his six month stay in the hospital (four of those months in the Neonatal Intensive Care Unit, or NICU), he developed one complication after another.  Numerous brain bleeds.  Strokes.  Convulsions (seizures).  Apnea spells.  Tachycardia or bradycardia ( rapid or slow heart rate).  Necrotizing enteritis that could have very easily killed him.  Brain damage.  Damage to his eyes (he is legally blind).  Lung damage requiring oxygen therapy up to 24 hours a day.  Physical, occupational, and physio therapies.

He is a medical mess.  

Taking care of him requires 24 hours every day, seven days a week, four weeks a month, 365 days a year.  Nurses have to come and help him when Jim (my husband) or I aren't available.  

When Michael was a year and four months old, he was diagnosed with having cerebral palsy.  He will probably never walk or talk, according to his doctors.  His prognosis is bleak at best.  He has to be fed by a tube in  his belly or nose up to five times a day (his meds are delivered in the same fashion), and he will probably never be toilet trained.  His limbs are stiff and hard to move.  Moving them causes him pain, yet this is necessary so they don't atrophy and become all the more useless than what they already are.

Michael is still tiny, in comparison to most seven year olds: he is the size (and weight) of the average two-year-old.  His sister, who is four, towers over him; Meghan will probably be at least six foot tall (or better) by the time she reaches her full height, according to our primary pediatrician.

Until recently, we'd done pretty good in caring for Michael, but now it seems that Jim and I fight all the time when he isn't at work.  Mostly it's about bills or whose turn it is to tend to Michael or not having time for Meghan or our third child, two-year-old William (Willie).  We sometimes get into loud shouting matches; it's a wonder the neighbors don't hear us arguing in the middle of the night.

We used to enjoy our time together.  Now it seems that Michael takes up all of our time when the nurses aren't caring for him and the other two children are "acting out" because we aren't spending nearly enough time with them.  Meghan has taken to becoming mouthy and self-centered while Willie has started biting people (including us and his sister and brother).  It has gotten really bad.

It's almost to the point to where I or Jim want to either kill Michael to put him out of his miserable existance or at least put him into a home for severely handicapped children where other, more skilled staff can care for him while we try to get our lives back.  

What to do?  Any suggestions would be greatly appreciated!  We want what's best for our son, but not to the point of it  ripping our family apart!  The stress level we are currenlty experiencing is incredible!

~To be continued.~