A little known secret...shhhhhh

Ha!  That's a joke.  I'm an open book.

I know a lot of special needs moms online.  I know a great many of their kids are preemies.  I know that preemies have greater survival rates than ever before.  Back in the day, when I was born, preemies and not that much premature at that simply died.  This survival rate seems to bring a great deal of live long health problems for the children surviving though.  Included are hydrocephalus, cerebral palsy, seizures, heart issues, lung issues.  You name it.  And first time parents of preemies can be terrified of having a second child.  It's natural.

Jimmie is not a preemie.  He was due on July 3, 2006.  He was born via emergency c-section on June 23, 2006 due to my sudden loss of amniotic fluid.  My water didn't break.  It was just gone.  Overnight.  We induced labor, but Jimmie was sunny side up and not turning over for anything...and then his heart rate dropped.  So c-section it was.  He was small.  Apparently I have a small uterus.  A fact commented on both times I gave birth by the operating doctors.  So he was small.  6 lbs 1/2 oz.  But he was technically term.

I, on the otherhand, am a preemie.  I was due May 10, 1968.  My father was going to be 33 years old on March 29, 1968, and my mother teased him mercilessly about being 33 before he was a father.  But then I stopped moving.  M mother went to the doctor in a panic.  Apparently I was completely tangled in the umbilical chord.  There was no choice but to deliver me, immediately.   I was born March 26, 1968.  Of course the first words out of my father's mouth to my mother were, "I'm only 32."

I was baptized by the nurse, who was also Catholic.  I weighed 3 lbs 11oz..  I had highline, which is underdeveloped lungs.  In years subsequent to my birth, preemies with highline were intubated and given oxygen.  I was simply placed in an incubator.  My lungs would either develop or I would die.  I also had jaundice.  The Kennedy baby died from similar issues due to prematurity just a few years prior.  I was by no means considered healthy.

Appetite has never been a problem.  I ate like a horse out the gate.  I gained enough weight in less than a month to be sent home.  My lungs developed fine.  I have no heart problems.  I have no lung problems.  Lord knows, I have no problem keeping on weight.  I have never suffered any ill effects as a result of my premature birth.  None.

But don't think they expected me to live.  Preemies just didn't.  I did.  I am blessed.

I guess I would just like those parents who are afraid of having that second child to remember that things happen.  Just because one child is born prematurely and has problems does not mean the second will...and even if the child is born prematurely, it doesn't mean there will be problems.  Some of us are just fine.

Turning down invitations

You know what sucks?  Turning down an invitation.  I love people.  I love parties.  My husband's best friend is married to a lovely girl.  He is always asking us to join them for dinner or whatever.  It's obvious he wants for this best friend relationship to expand to the married couple friends status.  He tries.  My husband is not as social as I am.  He is perfectly happy having a best friend that he hangs out with independently and never having me socialize with his wife...or rarely, but he understands his friend's desire.  The most recent attempt however was an impossible one.  Mike invited David to play golf on Saturday morning.  And following golf, Gloria's brother (Mike's wife) was having a party.  An annual thing.  They have a pond on their property.  They play in the water, swimming tubing,  bouncy things.  They have a cookout.  They have a few beers and a few laughs.  It sounds like a great time.  Granted we don't really know Gloria's brother or Gloria's brother's family, but Mike invited us and told us to bring the boys.  Here's the thing:  we can't bring the boys.  Charlie would have wonderful time.  Jimmie would need to be either held in our lap the entire time, or restrained in some other manner, to prevent his walking full on into the pond and drowning.  We would never be able to relax and enjoy the party.  And getting a babysitter on such short notice wouldn't have been impossible, but would have been expensive.   Now here's the thing: we could absolutely take Jimmie out to a restaurant or to park (provided it is enclosed), but there is no way we can take him to a stranger's unenclosed yard with a pond.  It would be miserable.  So we come off like people who never want to do anything.  We do.  We would love to spend more time with this couple.   But this was just an impossible situation.  So what do you do?

Prince Jimmie (or it's okay to be non-verbal)

I shared a story I tell Jimmie recently with another IS mommy.  She was upset that her child was showing signs of distress and because he is non-verbal and unable to communicate the problem she felt rather like she was floundering, not helping him, not meeting his needs, not knowing what else to do to help him, and feeling useless as his mother.  It's a feeling we all, any parent of a non-verbal child, know too well. There are times when Jimmie will scream, and I simply cannot find the reason for it.  He has his milk.  He has a clean diaper.  He has no obvious wound.  He hasn't fallen.  He's just crying.  Or worse...he's crying and hitting himself (or banging his head on a wall or floor).  He did this for a month and a half this year, pretty much all day long.  I knew he was in pain.  I just couldn't find the source.  We took him to the dentist.  His teeth were fine.  We took him to the doctor, who agreed, there were no obvious wounds or broken bones.  He had a CT scan to confirm no head damage.  Normal.  We took blood samples to test for infections.  Normal.  In the end, David noted that Jimmie was burping a lot.  So we added prevacid to his daily meds regimen.  The screaming stopped.  Ahhhh.  Of course, this still happens on a smaller scale quite regularly.  Jimmie simply is unable to communicate what is wrong.  One day I lay down in bed with him and told him this story to help him understand.  I don't know if it helped him, but it certainly helps me. 


"Once upon a time there was a young Prince named Jimmie. Prince Jimmie was very well loved by his mommy and daddy and brother. And they tried to give him everything he needed. But Prince Jimmie couldn't talk or communicate what he needed. But he has a special friend in God, and God knows what Prince Jimmie needs and will provide it, even though Jimmie can't speak.  God knows Jimmie's every thought and want and need.  And God loves Jimmie as one of his greatest creations.  See God made Jimmie...and Mommy and Daddy and Charlie and everything...and gave Prince Jimmie to Mommy and Daddy to care for and love.  God knew Prince Jimmie even before he was born or even formed.  And God never leaves Prince Jimmie.   God tells mommy and daddy and Charlie what Prince Jimmie wants and needs. But sometimes they can't hear God so well and it takes time. But in the end they will understand.  It's okay for Prince Jimmie to cry.  It lets mommy and daddy know he needs something.  It lets them know they need to listen to God and trust God to help them understand him.  And it's okay for Mommy and Daddy to try and teach Prince Jimmie to communicate with them too.  It's hard for Prince Jimmie to do, when the world is so loud and bright and confusing, but God is with them all, guiding them. "