Princess Samantha's wedding and all I have missed...

Suddenly Samantha is 21 years old, and, even more suddenly, she is married.  Gone.  Half her life.  I moved away to find my own life in 2001.  In 2012, the little girl I loved as my own, whose sweet kindergarten gift of a key chain that reads #1 Aunt still holds my keys, who I took to ice skating shows and baseball games, who I had to seek out in the dressing room when her Grannie made her try on a dress she thought was way too girly because she discovered the twirl of that baby doll skirt in the 3 way mirror, who I had stay nights and weekends with me, who I took to mass, who I loved so very much, but who I left behind for the man I was meant to be with, became an adult in the eyes of the law and a wife in the eyes of the world, and I have missed it.

I admit with a grateful heart to feeling jealous that her other aunts prepared her reception meal so beautifully and lovingly.  Oh yes, it's nice.  Wow!  What an amazing gift ladies!  You deserve a ton of praise.  Ah, but I was that aunt, not you.  I was.  And then I was gone.  I am so glad that you are there, and that you are there for our beautiful princess, for truly she is our niece, not mine alone, but I am sure you know exactly how I feel.  I am sure at some point, Samantha was gone with me, when you had wished her with you.  I am so happy that you were there.  So happy you enjoyed her day and blessed her day with your loving care.  And I am so sad I missed it all.

I celebrated Samantha's wedding by watching "Say Yes to the Dress" and "Four Weddings".  And watching my 5 year old destroy the house again.  Paper everywhere.  Laundry everywhere.  Things thrown just to be thrown.  Anger just because.  I love this child with all my heart.  And I make sure he does not hurt himself in his tirades, or his brother.  But I feel helpless to stop them.  And I know had we had the funds and the time to attend Samantha's wedding, I would have spent the entire time chasing Jimmie...or David would and then he would be mad that I didn't chase Jimmie enough.  Life is very isolating when your child is in destructive mode and you don't know how to fix it.

Tomorrow he has an appointment for a neuropsych evaluation.  God I hope we get some answers.  I really want to enjoy my sister's wedding in April.

The Magic of Christmas

I am loving this Christmas.

My love, Jimmie, simply doesn't register Christmas, except to kick the tree.  Presents mean nothing.  Santa is nice, and he likes him.  Probably for the red suit and the big smile.  Who doesn't like Santa?  But there is no excitement in his eyes about Christmas.  It's just Christmas.  It's fun.  There's family.  Scott's house or Aunt Beth's house are nice places to run around in.  They're bigger than our house.  But that excitement only comes in the being there.  There is no anticipation.  And anticipation, after all, is the magic of Christmas.

Last year Charlie was almost 2.  I had hoped he would kind of get it, but not really.  Not yet.

This year, he is almost three.  He has learned to talk.  And he gets Santa....big time.  He watches all the Christmas Specials.  He went to the Christmas Parade with Mommy (Jimmie stayed home sick).  He watched the parade as he shivered with a huge smile on his face.

He waited in line at the bank after to see Santa Claus.  He was patient.  He did not butt in line.  He stood by my side the whole time.  The little boy in front of us was about Charlie's age.  He would have none of Santa.  Nope.  Not sitting in his lap.  Nope.  Not smiling for a picture.  Nope.  I have no idea who this person is, and he scares me.  Nope.  But Charlie stood there perfectly calm, holding my hand.  Then the family moved on, giving up this year.  I said, "Charlie, it's your turn."  He dropped my hand like a hot rock and took a running leap into Santa's lap.  Big grin.  Big hug.  Tongue stuck out.  For some reason he sticks his tongue out when he smiles.  Santa asked, "What do you want for Christmas?"  He gave a one word answer, loud, and clear, at least to Mommy, who actually did have to interpret it to Santa, "TOYS!"  Santa laughed, "Ho Ho Ho!  I think the elves can manage that!"  And for a week or so, that was the best answer we could get out of him.

But I knew his secret desire.  And he revealed it to both Mommy and Daddy in a simple trip to the grocery store.  He walked by the cart.  And then he saw it!  And he made a run at it!  And he squealed with delight!  "FLASHLIGHT!"  His father pried it out of his hands.  I laughed and said that he should ask Santa for it.  He put it back with joy knowing that Santa might bring him that flashlight.  We walked away.  As we rounded the corner, and he bounced ahead, I gave his father the high sign.

Ever since, whenever you ask what Santa is going to bring he says, "Toys!  and a flashlight."

Tonight we called the North Pole.  Charlie spoke to Santa on the phone.  Santa asked again what he wanted (and again Mommy actually had to interpret), and Charlie once again responded, "Santa Claus bring toys and fwashwight!"  He really wants that flashlight.  And it is so awesome!

He sat in the recliner covered with the Disney blanket, drinking a glass of milk, watching House of Mouse Christmas, falling asleep.  I got him into bed, tucked in, teeth brushed, books read, prayers said.  No sleeping.  An hour later, he calls, "Mommy!  Mommy!"  I go in.  His eyes are wide.  "I hear sleigh bells."  I laugh.  "No baby.  Not yet.  You have to wait a few more days."  He says, "Oh.  Santa Claus bring fwashwight?"  I assure him that I am sure Santa will bring his flashlight.

Yes.  The magic of Christmas is the anticipation.

Triumph!

Ah, today was awesome!  Today my son was running around in the back yard.  Running for Jimmie is a stimming activity.  He is in his own world.  He loves it!  It's a happy stim, but it is a stim none-the-less.  I have seen him grabbed up by his father and whirled around while running and seen a response, laughter, giggles, but as soon as he is put down, he runs again.  I don't mind it.  It just is what it is.  But today, well, today, he was running, and he looked at me from across the yard.  He made firm eye contact.  He smiled.  He ran at me.  He ran to me.  He flung open his arms and threw himself into my waiting arms.  And I saw it coming.  I saw it from the moment his eyes locked mine and that smile spread across his face.  It was brief.  A short hug and back to running.  But my God, it was an awesome moment.

What do we live for but moments like these?  And I appreciate them so much more than the Mom next door.  She gets them all the time.  She cherishes them to be sure.  I don't doubt her motherly love.  But I don't get them all the time.  Well, not from Jimmie.  Charlie makes a game of it.  But Jimmie has never done that.  Ever.

I have never before seen such clarity in his eyes, certainly not combined with purpose and love and joy.  These are things that rarely register on his beautiful face.  I see purpose when he goes after a straw, but I also see that he sees absolutely nothing but that straw.  I am invisible.  Even the drink the straw is in is invisible.  He sees only the straw.  I have seen joy.  He is often happy.  I have seen love, when he happens to find himself looking into my eyes.  But today, all these things combined.

And I swear for that brief moment it took him to cross the yard and hug me, he was a normal 5 year old boy.  No sleepiness in his eyes.  No overly medicated droopiness.  No cognitive disconnect with the world.  He saw me.  He had a purpose to hug me, but he was not blind to the rest of the yard or to his running or to the wind blowing in his face.  He was happy.     He was present.  He was 5.  It was amazing and wonderful.

It makes me want to get him weaned off some of these medications.  I want to see more of that little boy.  I want the seizures to stay at bay.  I want so much...  But I'll take the moments as I get them.  And I will rejoice in them.  And I will cherish them.  And I pray I always remember that moment.

Special Needs Hierarchy?

I just watched a wonderful news story.  It was full of heart and generosity and love and it slightly pissed me off. See it was about a playhouse for children with Down Syndrome, a fun place that advocates for Down kids and provides vestibular stimulation, developmental therapy, and social interaction.  Down kids.  My LGS son doesn't have Down Syndrome.  So he can't come and play in that neat place and meet those neat people and benefit from all they have to offer.  Somehow that just doesn't really seem fair.

Don't get me wrong.  I'm all for advocating for children with Down Syndrome and for helping them to reach their full potential.  I believe with all my heart they are wonderful children who deserve the very best we all have to offer them.  My cousin Joe Joe had Down Syndrome.  He was a loving man child, who remained mostly non-verbal his entire life.  He could say a few words.  His name.  My name, which came out Gunna.  Hot Dog.  Ice Tea.  Mom.  Dad.  Bubba for brother.  He had a great sense of humor.  Once when my father was chasing my mother with the running hose, she screamed for help from Joe Joe.  He was her cousin as well.  Her uncle was married to my father's sister... but let us save our convoluted family tree or ring or whatever it really turns out to be for another time.  Joe Joe stood and stared at her wordlessly for a second.  Then he did his best body builder pose and growled like the Incredible Hulk.  My father had caught my mother and was dragging her back to the hose, but as Joe transformed into the Hulk, my father dropped my mother in a fit of laughter, and Mama escaped into the house laughing and singing her thanks for Joe's brave rescue of her.  Joe Joe played with my sister and I daily as children.  He is ever-present in my early memories.  I spent my life defending him from bullies on the bus, and I openly hugged and kissed him in view of my friends and told them all to leave my boy alone.  I loved him as if he were a brother, a friend.  I only ever wanted the best for him.  And he deserved so much more than he ever received.

But Down Syndrome is not exactly rare. The prevalence is 1 in 800 live births or 1 in 971 children aged 0 to 19 (http://www.medicalnewstoday.com/releases/172493.php).  Infantile Spasms, of which 49% of LGS cases began as and which is how Jimmie's epilepsy began, has a prevalence of 1 in 2,000 to 4,000 of live births (http://pediatricneurology.com/infantil.htm).  That is a staggering difference.  Anywhere to half or a quarter the total number of cases.  I daresay almost everyone recognizes a child with Down Syndrome as a child with Down Syndrome.  They would never say that Down Syndrome was a case of colic.  Certainly no medical professional would dismiss Down Syndrome as Colic.  Ask an IS parent how many times that has happened to their child.  Sad.

My point is I don't think that special needs groups should splinter like this.  You shouldn't have to have Down Syndrome to be allowed into Gigi's Playhouse.  You should just have a need for a place like Gigi's playhouse.  There should be no hierarchy.

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. "