Why I Hate Sleep

I used to be a sleeper.  I hadn't slept for so many years before I met my husband, I think I was making up for it.  I don't even remember really dreaming...but before I got pregnant with my twins, I'll admit (since anyone who knows me in real life already know!), I used to smoke my fair share of pot.  As soon as I took my first round of fertility treatments, I stopped cold-turkey, determined that my children would get a mom that was completely present.  A lot of my own childhood was one I wouldn't wish on anyone, and being clean and sober was part of making sure that wouldn't be re-played with my own children.  (I haven't touched anything stronger than an Ultra-Strength Tylenol in over 4 years.  I have strong views on the childhood my own kids will get, and there's nothing in this world that would ever sway me from it.)

So as I was saying, I used to sleep.  Then I had the twins.
When they were born, we had to leave them behind in the NICU and go home without them.  I couldn't sleep.  How could I?!  I was terrified that if I slept, something would happen to them...that if it wasn't for my hourly phone calls to the hospital, their fate would be sealed...and not in a good way.
I never slept more than an hour at a time during the 6 weeks they were in the NICU without me.  Then, I moved into the "Care By Parent" unit of the NICU with them for the last 16 days.
It didn't take long for me to figure out that the 5 or so hours of broken sleep I was getting at home was a WALK IN THE PARK compared to the 3 hours of sleep I was getting in the hospital!
(The only difference was that in the hospital, with the babies right next to me in their cots, hooked to monitors, I could get that 3 hours of sleep all in a row...which is more time than I'd slept in one stretch than I had in a LONG time.)

When we took them home they were still on an every-three-hour feeding schedule, around the clock.  And, if you've never been on one, I'll explain to you that it means every 3 hours from the start of one feed, to the start of the next feed.  Even if it takes 45 mins. to feed the baby.  Even when there are two.  So, I'd feed one for 1/2 an hour to 45 mins., then put them back to bed.  I'd wake the next one, feed them for 1/2 an hour to 45 mins., and put them back to bed.  Then I'd pump (for the first 4 months), or make up the next bottle for my daughter (after 4 months), before going back to bed for what ended up being roughly an hour.  Then I'd get up and do it all again.
They had this schedule for 6 months after they came home (until they were 8 1/2 months old).  My husband works shifts, and was working 14 hour days after they came home, so I was doing all the feeds myself.
In total, I would sleep 3 hours every 24 hours...in three 1-hour spurts.
Even after we were given the okay to let them sleep 4-5 hours between feeds, I was still up every hour on the hour, checking to make sure they were alive.  I couldn't help it.  I'd seen them both so close to dying so many times...

Anyways, they never slept through the night until they were 16 months old.  (And when they did "sleep through the night, it was for 6 hours.)  I'd learned to go on very little sleep, so when our 3rd child was born a month before the twins turned 2 1/2, I had no problem with the night-feedings.
I had no problems with her waking up at night, then having to get up early with the twins in the morning.  I don't mind not getting a ton of sleep...and I'll tell you why.

Since having kids, I'm having nightmares again. And not just a bad dream about being chased by a monster or whatever, it's always horrible dreams about something happening to one of the kids. I dream that someone steals one of them, or we lose one of them...and lately I've been dreaming about the baby. I've been having nightmares that she's falling down the basement stairs, that someone steals her, or that she disappears from a store, that she dies. Last night I dreamed that Children's Aid came and took her away to give her back to her real mom. And even though I know, logically, that I gave birth to her, there is still nothing more upsetting for me than imagining that for whatever reason, these kids wouldn't be here everyday when I wake up.

I don't know if it's because for the first time in years I'm really getting some real sleep, or if it's because of the insanity that has been our lives for the last couple of months is now settling down and my brain is still stuck in crisis mode, or what.  But I don't like it.  And it makes me hate sleeping.

For as long as I can remember I've had nightmares, and only waking up every couple of hours during the night, or not sleeping for any real stretch of time, can keep me from having them.  Only during those years that I smoked my body weight in pot everyday, could I sleep without worrying about having a horrible nightmare.

Even as a kid I remember having a nightmare about my mom killing my dad and brother, and telling me that she wouldn't kill me if I didn't tell...
I remember dreaming about "killers" sneaking into my house, and I had to hide my brother under the leaves in our backyard so they wouldn't find him...and there was nowhere for me to hide...
And that re-occurring nightmare about falling down basement stairs and seeing the shadow of a man at the top of the stairs...I'd wake up before hitting the bottom.  I had that dream EVERY. SINGLE. NIGHT. for years and years before it stopped suddenly.  (I'll get into that another day.)

I don't know.  I don't really get why I have the nightmares I have, but it's probably a mixture of stress and going to bed thinking about things that are best thought about during the daylight hours.  I think I need to also stay the heck off of the internet around bedtime and maybe stay off the Nancy Grace Facebook page all together.  (You'll see a disturbing trend on there if you look...)

Anyway, I'm going to get off of here and have a tea party with my little pants-less fireman, my "Christmas Dora", and the "Pink" princess.   LOL

Hopefully tonight will be different.

Hydrocephalus...What This Has To Do With Me

Well, as you may or may not already know, my twins were born 10 weeks early (30 wks., 2 days).  They had a rough start, and one day I'll get into that further.  (Today is not that day.)

Because of their size and gestation when they were born, the kids were signed up to attend the "Developmental Follow-Up Clinic" at the hospital where they were born.  They went every 4 months at first, just to make sure things were moving forward...that their development didn't fall too far behind their peers.  (We always knew they'd be somewhat behind for the simple fact that they were born 2 1/2 months early.  The developmental follow-ups were to make sure that if they failed to progress, we could get some early intervention to help them out.)

From the time my son was born, he had a big head.  Even at 3 lbs., 14 oz., his head was 32 cms.  (12.5 inches), which was only 3 cms smaller than my last daughter who was born 3 days past her due date.  From the start, his head was always above the 90% percentile.

Over the course of the first year, his head was always a growing concern (no pun intended).  It got to the point that it was in the 96% percentile, growing much faster than anyone liked.  The pediatrician at the follow-up clinic had us take him in for an ultrasound of his brain (they did it through the soft spot on the top of his head).  There was excess water there.

I want to mention that at the time, the man who did the ultrasound on his head told us that he'd seen tons of children come in with excess water on the brain, and that it ended up being reabsorbed over time, never resulting in anything except a large head.

I didn't care what he said.  Honestly, IMO, an ultrasound tech isn't the person I want telling me that my baby boy is okay.  I wanted to hear it from someone with some letters behind their name...like the pediatrician.  But she didn't.  She sent us to a pediatric neurosurgeon.  The appointment was scheduled for two months later.  It was the longest two months of my life, next to the two months the twins spent in the NICU. 

Everyday I would kiss my son's head over and over and over.  (A mother's kiss is healing...right?  "Please let these kisses heal him...please, please...please the them heal him...")

For two months all I could think of was what would happen if he was diagnosed with Hydrocephalus.  I'd never even heard the word before, and believe me, Google doesn't give you a really hopeful idea of what can happen.  I joined some support groups on Facebook, telling them that I didn't know if my son had it, but it seemed like everyone important thought he did...

I met a man named Perry.  He may or may not end up telling his story here.  He had it since he was small, and has been through it himself.  He told me what I needed to hear.  My son would swim, he would play, he could do whatever any other child could do, even with a shunt.  The only things he may not be able to do would be contact sports like football (and I mean real football, not soccer.  LOL).  He gave me hope when I needed it, and I'll forever be thankful for that.  His words didn't make everything better, but gave me enough hope not to lose my mind while we waited to see the surgeon.

At the assessment, the neurosurgeon looked him over, had him walk, and said that from what she saw from the ultrasound pictures, it could be something that goes away...or not.  Only time would tell, and she wasn't going to put in a shunt just yet.  She wanted to see what happened, and scheduled another appointment four months later.

Well, I'll tell you.  My brains don't work like they used to.  Being alone with twins 12-14 hours a day can get to me...make me forget anything other than what is happening that moment, right in front of me.  I lost the card that had the appt written on it, and no one called me to remind me of the date.  So we missed it.  When I found the card, it was about a week after the appt. was scheduled, and we had to rebook.  Great.  Another two months of waiting.  All this time, I had still been holding him and kissing his head over and over, every single day, praying and wishing and hoping that my kiss would be enough to help him.

Finally the day of the appointment.  I was so scared I couldn't eat, couldn't think straight...I just felt sick from worry.  We got there early, and waited in the room for about 40 mins before the neurologist finally showed up.  (She'd been in emergency surgery.)  He spent all that time just running around the entire wing of the hospital...being crazy (as usual)!

She watched our son walk to the toys.  Pick them up.  Turn around and run back to us.  She heard him talk, and she saw him smile.  She picked him up and put him on her lap and looked at his eyes.  She put him down and looked at us and said the words that I'll never forget.  "He's fine."

She explained to us that because he was clearly developing...moving forward in speech and movement, he was able to bend over, pick up a toy, and bring it to us...he was okay.  Children with Hydrocephalus stop developing without a shunt.  She said that his eyes looked perfect, that he was just as crazy and active as any other child.  She measured his head again...still in the 96th percentile.  Then she measured my husband's head.  Same.  LOL  My husband was also in the 96th percentile!  His big head wasn't from Hydrocephalus, it was genetic...passed down from Daddy!

The entire thing put it all into perspective for me.  There are brain disorders that are just not known about by the general public.  Sometimes someone can look totally normal and have something going on inside of their bodies or their brains that we can't see from the outside.  And the lack of education about Hydrocephalus is just upsetting to me.  It's something we need to talk about.  Something we need to find a cure for. 

Although my son was not diagnosed with Hydrocephalus, everyday others are.  I'm sure there are people in my community (and yours) that have it and no one even knows, because the shunt is inside of their body, you can't see it and identify it.  So, as a thank you to Perry, I am going to start a Hydrocephalus Support Group in my city as soon as my twins start school next year.  I will find them a place to meet, get things going, and leave them to it.  I am a fantastic planner.  It's what I do.  And I think that no matter what you're going through, it's easier when you know you're not alone.  I don't feel like I should be at their meetings, because my story is not like theirs.  But I know the fear that they faced when they were given a diagnosis.  It's the fear any mother would have when she's told that there is something wrong with their child.  I can't fix things for everyone, but I can help them find other people who can relate.  No one should have to face Hydrocephalus alone.

So there it is.  That's my story about Hydrocephalus.


Donations for research can be made here:  GUARDIANS OF HYDROCEPHALUS RESEARCH FOUNDATION

**Update:

I am in the process of figuring out where meetings could be held if I am able to find people interested in joining a support group.
My twins started school yesterday, and this has been on my mind, again, for the last two weeks.

As it progresses, I will post about what's going on.  : )

Facing The Truth

One minute he's safe inside of you...warm and secure, he can hear your muffled voice and the sound of your blood flowing, and the beat of your heart...all is right with the world.  The next second he's being pulled from that safe place, into a world that is too cold, or too hot, and it smells funny. He can't see more than a couple inches from his face, and he has no control over his own body. Someone immediately starts trying to put something scratchy on his butt, then something itchy on his body. They poke him with needles, and stab his foot to draw blood, and he doesn't know what's going on...only that his thigh and foot hurt and no one is stopping it.

Then they wrap him up and give him to you.  You put him up to your breast, and he feels safe again.  He feels as close to being inside you again as he possibly can.  

"Finally...Momma...there you are..."Snuggled up to you he hears that familiar heartbeat he's known since his life began so many months ago, and is soothed by your voice. You are his whole world...the one person who is close enough to his face for him to see...the only one he WANTS to see. He just studies your features, amazed at how wonderful you are...finally he gets to see who was doing all that talking all that time. He falls asleep in your arms because just being with you makes him feel safe.  His trust and love for you in this instant will never be matched.  The world is scary, but with you there, suddenly everything seems like it might just be okay after all.

Then something happens. Someone he doesn't know comes and takes him. They walk quickly with him through hallways, and he's scared. All he wants is his momma.  He just wants to be in her arms...
"What happened...everything was perfect a minute ago..." They take him into a room, undress him, take off his diaper and strap him to a board. The board is cold, and it hurts him to be stretched out like that.  He can't move his arms or legs, and that's scary.  Someone puts a thin sheet over him, and it's so confusing.
"Where's my momma?  Her voice makes me feel so safe, and her touch calms me..."
 He can hear other voices, but can't recognize his mother's in the group, and he see fuzzy things moving around above him.  He's not sure what they are, but the voices are coming from those moving shapes.  He cries for you, but no one comes to save him...in fact his cries are completely ignored until someone sticks a sweet pacifier in his mouth. For a moment he stops crying, not sure what it is in his mouth, but the sweetness makes him forget what's going on around him for a second. He sucks, and is soothed by that.

Suddenly he feels a hot burning. It's coming from down near his feet. He can't reach out and find out where it's coming from because his arms are strapped down...he loses his breath and flails his head around, searching for you..."Momma...Momma...!!"

Finally he manages to get a breath, and lets out a scream...again that sugary pacifier is put in his mouth, this time he chokes on the liquid...it's not helping him forget what's happening as they tear the skin that was fused like a fingernail is fused to your finger, from the end of his penis. He cries and cries for you, choking and sputtering on the liquid someone keeps trying to stick in his mouth.

"Where are you momma? Why are you letting this happen? I thought you said I was so beautiful...you said I was perfect..."

He goes into shock as they cut through the skin to create a space big enough for the circumcision tools to fit into. Suddenly he stops fighting, suddenly he stops crying for help...he just lays there, closes his eyes, and imagines life before he met you...safe...warm...back when you were a muffled voice and a heartbeat...back when you would have done anything in this world to keep him safe...




When they bring him back to you, his face is red, but his tears are dried. When he looks at you, he cries again.

He squeezes his eyes shut as hard as he can and thinks,
"Where were you? Why didn't you come and save me?"


There is no Health Organization in the world that recommends routine infant circumcision.


"Why did you let them do this to me? You said I was perfect, momma... You said I was perfect when I was born, just the way I was...and you were right! I didn't need to live through this, and I will always carry a memory in my brain of crying for you and you not coming...the most horrible pain I'll ever experience, and you not saving me.  And now when they bring me back to you and I look at you and cry, it's because my heart is broken."


From the emotional and physical trauma he's lived through, he sleeps. He's trying to heal his body, and find security in the only way he can now. His trust in you was broken. He learned a harsh lesson about life and love, and he was only just tiny. He learned that only sleep will make it all go away, and that even when someone is supposed to protect you, sometimes they don't.  Sometimes all the love in the world isn't enough to make them ignore generations of misinformation to do what their heart tells them to do...keep their baby whole, as nature and God intended.