Sleeping Through the Night

I really thought it would happen by now. I thought that by the time my boys were 9 and 11 I could count on sleeping through the night every night. I was clearly mistaken.

Nobody told me that mothers have some sort of magnetic power that draws their offspring to the "Mom" side of the bed. Even if The Mom tries to switch sides, the offspring intuitively know it.

"Mom? Mom? Mom!"
"Yes"
"My tummy hurts."
"Do you have to puke?"
"No"
"What do you think I should do to help you?"
"I don't know."
"Let's get a drink of water, go to the bathroom and go back to bed."
"O.K."

Sleeping resumes.

"Mom? Mom? Mom!"
"I had a bad dream."
"C'mon, get in"
"No, I don't want to get in bed with you, you snore. I just wanted to tell you."
"O.k., thanks."

Sleeping resumes.


"Mom? Mom? MOM!" (this time from his bedroom, not 3 inches from my ear)
"Yes dear"
"I heard a noise"
"O.K."
"I think someone is in the house."
"Your dad locked all the doors before we went to bed."
"I still think there's someone in the house."
(In my head I'm saying 'well shut up, with all you're yelling, they're totally going to find us' but what I really say is:)
"O.k., I'll go check"
.......I wait a minute or two....
"Mom, I know you didn't get out of bed"
"O.K., I'm going"
Whereby I turn on a couple lights, knock around the house a bit and return to bed giving the all clear signal.

And then morning comes. I turn to my betrothed and say "how come they never come to YOUR side of the bed" and he says "Who?".

Yeah. He never even wakes up anymore.

WTF? I sure as hell don't remember waking my parents up for this bullshit. And if I did, my mom would have said something like "get you butt back in bed or I'm going to GIVE you a bad dream".

There are so many things they forgot to tell me when I signed my "Mom" contract.

Sleeping Through the Night

I really thought it would happen by now. I thought that by the time my boys were 9 and 11 I could count on sleeping through the night every night. I was clearly mistaken.

Nobody told me that mothers have some sort of magnetic power that draws their offspring to the "Mom" side of the bed. Even if The Mom tries to switch sides, the offspring intuitively know it.

"Mom? Mom? Mom!"
"Yes"
"My tummy hurts."
"Do you have to puke?"
"No"
"What do you think I should do to help you?"
"I don't know."
"Let's get a drink of water, go to the bathroom and go back to bed."
"O.K."

Sleeping resumes.

"Mom? Mom? Mom!"
"I had a bad dream."
"C'mon, get in"
"No, I don't want to get in bed with you, you snore. I just wanted to tell you."
"O.k., thanks."

Sleeping resumes.


"Mom? Mom? MOM!" (this time from his bedroom, not 3 inches from my ear)
"Yes dear"
"I heard a noise"
"O.K."
"I think someone is in the house."
"Your dad locked all the doors before we went to bed."
"I still think there's someone in the house."
(In my head I'm saying 'well shut up, with all you're yelling, they're totally going to find us' but what I really say is:)
"O.k., I'll go check"
.......I wait a minute or two....
"Mom, I know you didn't get out of bed"
"O.K., I'm going"
Whereby I turn on a couple lights, knock around the house a bit and return to bed giving the all clear signal.

And then morning comes. I turn to my betrothed and say "how come they never come to YOUR side of the bed" and he says "Who?".

Yeah. He never even wakes up anymore.

WTF? I sure as hell don't remember waking my parents up for this bullshit. And if I did, my mom would have said something like "get you butt back in bed or I'm going to GIVE you a bad dream".

There are so many things they forgot to tell me when I signed my "Mom" contract.

Exceptions to My Rules

So, our inservice with #1's new Jr. High School staff went well. I let him lead the discussion; I started off explaining that he has hemophilia and then let him explain what that meant. I could tell from the expressions on the faces of the staff that they were impressed with his ability to explain what it's all about.

He started off simple: "Hemophilia is a Bleeding Disorder. My body doesn't make a factor that's needed to stop my blood from clotting." Then he mentioned his liver specifically and that he does infusions twice a week to give himself the factor he needs. WE (both of us!) talked about some of the things we worry about most - head bumps, falls that could injure joints, and things like that. He also shared that he won't bleed faster than someone else, it just doesn't stop.

All good.

Last Thursday #1 came home and said that at lunch he'd scratched the roof of his mouth with a chip (a Sun Chip, to be exact) at lunch. Little, itty bitty scratch...no biggy. It kept bleeding and he hates that "quarter" taste in his mouth. He ate a Popsicle, pressure with gauze and an Amicar mouth rinse * and all was fine.

Friday morning he calls my husband and says that it's starting bleeding again, not a lot, but the taste is bugging him. So my husband goes to school with the infusion stuff so #1 can do a poke. But my husband only took one butterfly needle...and #1 missed (the first time he's missed in months) so my husband drives home and brings a needle back, they finish the poke and all is well. It's the first time my husband has had to show up at school...now he knows the rule of packing triple of everything!

At supper over the weekend my husband asks #1 "Who was that guy that walked through the nurses room while you were poking" and #1 says "The principal".

So, today I picked #1 up from school (he usually takes the bus) and the principal was outside so I decided to introduce myself to him (he couldn't be part of the inservice, he was out of the building). It's important for me to get some "face time" with everyone in the building that the boys come in contact with. (It's not a hemophilia thing, just a fellow teacher thing. We always remember the parents who make a point of introducing themselves - put the kid's face with the parent's face.) I remind him who I am, who #1 is and that he walked through during the infusion.

I - jokingly - say "I guess I forgot to tell your staff about the dangers of chips". And the principal says (very seriously) "Let #1 know that when he goes through the lunch line, he can tell the ladies that he can't have potato chips". Uhhh......

I reassure him that I'm joking about the chips and that #1 has broken an arm, jammed a thumb and done any number of bone-head moves, but you just never know what will end up being a pain in the neck.

And I also reassure him that chips aren't a danger.

DOH!

*We have found that if the boys are having oozing in the mouth, rinsing with severl cc's of Amicar for several minutes (we shoot for 5) works well. When then swallow it they both complain of upset stomachs. My boys have hemophilia B. Sometimes what works for one doesn't work for another.

Too Good to be True?

Whenever I share my perception...OUR perception...of how the boys are doing and what life is like with hemophilia, it feels strange. It feels like people think I'm making it up. I know a few other families who have kids who seem to be well adjusted like mine but there are far more who struggle.

My kids self infuse and have self-infused since age 8 and 7. They wear medical bracelets and have since birth. They share openly with their peers, adults and others about hemophilia. They have never "faked" a bleed (knock on wood). They don't have joint bleeds. They don't have breakthrough bleeds.

We have left them with babysitters, family and friends for extended periods without incident. We have taken them on several trips and never had a problem.

I dunno. Sometimes it seems too good to be true. And I feel like I'm going to jinx us if I say it out loud. But then I have to remember what I've forgotten. All the shitty ER visits. Facing off with the hematologist about starting prophy. Transitioning from port pokes to arm pokes to self infusion. Driving 1200 miles so they could go to a camp we felt confident in.

And then there's the whole moving from one state to another. But a lot of that stuff caused my husband and I grief, hopefully not so much the kids (except the move). I'd like to think the boys have remained relatively unscathed. Unusual senses of humor? Twisted? Too big for their britches? Oh, sure. But that's not hemophilia related. That's just us! :)

We do...each and every one of us...know exactly how fortunate we are that things are manageable. We've met people in far worse situations. That's a good thing because it makes us chuckle when others (clotters - as a commenter wrote) say "Oh my goodness, that must be so hard.

I suppose there's always my idea for a new "savings plan" for the family. I think parents should be able to pre-pay their kids' therapy. This way, if I have to do something (on purpose or on "accident") that may mentally scar them, I can just deposit an extra $50 in their therapy accounts to make up for it.

Tax-free therapy. I'm thinking it's the wave of the future.

Educators and Hemophilia

It's the beginning of the school year. Which means hairy scary for parents, students, and especially teachers. I am one and have some of each so I feel tri-hairy scary.

I'm getting my classroom together. Setting up bulletin boards; putting those big sheets of butcher paper up and making the blank bulletin boards look nice and neat. It's not easy! The school I teach at has a VERY, VERY limited budget. We are grant funded and subject to the whims of the state legislature. We'll always have funding, but we never know how much.

I'm identifying my goals for my various students this year. And I teach high school resource (special education). So my goals for my students must help them achieve the goals they have on their IEPs. An IEP is an Individualized Education Plan. This plan is set up based upon the "qualifying condition" that has made the student eligible for special education services. Somewhere along the way, it was determined that the student needed extra services to make that student succesful in the classroom. Each and every public school student is entitled to a free and appropriated public education. What makes a student a "special education" student is that what is deemed appropriate for most students isn't appropriate for this student because of some qualifiying condition.

A specific learning disability, a behavior disorder, a physical limitation (it's not appropriate to ask a student with cerebral palsy to have to handwrite answers to a test), an emotional disorder, etc...that's what counts as a qualifying condition. Each year goals are written for the student and specialists are designated to help the student meet those goals.

My students have lots of goals, needs, accomodations....etc. And then there are the students who have other issues that make school a challenge, but don't qualify for special education services. Like a student with asthma or diabetes. Or one who is pregnant. Or who lives with his Grandma's neighbor in the basement and can't get to school on time because the alarm doesn't work, they don't have a phone and the dog has to be fed before the student can walk to school. (You laugh? Oh...the stories I could tell)

Anyway, each year millions of classroom teachers eagerly plan and prepare their bulletin boards and make the room inviting and appealing to students. We think about the things that will make a student comfortable and ready to learn. We try to figure out a way to organize their papers and assignments so that when parents call with questions, we can find the information they are looking for quickly.

I personally spent about $100 today just on stuff I can't get my school to pay for. Stuff like making my all file cabinets hanging file cabinets. You know...those metal frames you add to the drawers? We buy those. Those plastic "in-boxes" that students put their homework in at the end of the day? I bought 4. White board markers? I buy those. 3 Ring binders to put student work in? I bought 6 today. I bought paperclips and staples too...I need to buy my own stapler and electric pencil sharpener, too, but I didn't like what they had at the store.

I bought a "boom-box" for my room because the vast majority of my students work better when there is some music playing in the background. I use classical music often. If the class completes their work and is cooperative, I let them pick a CD to play. But if they are REALLY squirrley, I put in a little kid CD like Raffi or nursery rhymes....they hate it. I can get them to get back on task pretty quick if I have to pull out the "baby CD".

People that don't teach have no clue how much teachers spend on the "little things" that make an empty room a classroom. Those cute little note pads teachers send notes home on? Some come from gifts from parents, but we usually buy those. Those cute cut outs that teachers put student names on? We buy those. Colorful pens? Markers? Gel Pens? Cute scissors? We buy those. Classroom games? We buy those.

[Hey, by the way - instead of another mug, cute apple candle, Christams ornamet, bath gel, or novelty pair of socks, your kid's teacher would much rather have a gift certificate to the teacher store ($5 is fine, too), or a gift certificate to the video store, pizza place, grocery store...gift certificates are the bomb! We never, ever expect gifts from our students. We are touched that you think of us and greatful for your gifts...but after the first couple years of teaching, we have a lot of teacher themed stuff. And we really do have lives outside of school.]

We work to organize our teaching materials so that there is little "down" time in class. There's nothing worse that not being able to find the hand-out that you need. We check the lightbulbs in our overhead projectors and buy new markers. We make sure our computers still work and even though I'm using an ancient Gateway I still make sure I have internet connection so that I have something to reward my students with (computer games are big) when they do well.

We have to listen to the new and exciting things our principle wants to implement and figure out how we can work that in to our day. We have meetings about the new state laws and mandates and take that paperwork back to our room and try to find a place to file it where it won't be lost so that we'll remember when it has to be turned in.

We read the information from the Federal Government about how good or bad our school is and what we will have to do to ensure we keep all of our funding.

We check through all the items we ordered at the end of the year last year and see which things were approved and which weren't and then we modify our classroom plans accordingly. We see that the new LCD projector we wanted - that all the stuff that all the other schools have but we don't - wasn't ordered and we figure out how we are supposed to expose our students to new technology when we can't even get a decent photocopy machine in our building.

I take some time to wipe off the desks and remove as much of the grafitti as I can. What I can't remove, I try to cover. I especially hate the swastika on the back of a big file cabinet in my room. I've got it covered right now, but I don't know how long that will last.

In the midst of all this, I'm calling my own children's teachers and asking them for a few minutes to tell them a little about the boys and what they can expect the impact of hemophilia to have on their daily lives. I assure the counselor that I only need about 10 minutes, I just want some "face time". I mostly want to reassure them that even though the big, scary word "HEMOPHILIA" is on their records, we (my husband and I) aren't going to ask more of them.

If only every parent of every child with a little something "extra" had the experience of being a classroom teacher.

If only every classroom teacher had the experience of being a parent who has to reassure a school full of people that their child won't spontaneously blow up on the playground.

Public education has been getting such a bad rap for about 10 years. Most of the negative stuff comes from people who've never taught a thing in their lives. I hope that my children's teachers don't feel overwhelmed with my kids and one more thing to worry about. I sure go out of my way to tell them specifically what we expect.

Parents get a bad rap, too. No one wants to raise their kids to be brats. I don't expect my kids' teachers to be nurses....

Just a little sympathy, empathy and compassion on all sides would be and welcome thing.

What I expect my children's teachers to do about their hemophilia is very simple.

Rule #1 - Listen to my children. They've never faked an injury or only pretended to need ice before. I'm well aware that this may happen at some point. Let me be the one to make that call. Trust me, my punishment for faking will be far worse than what the teacher could come up with. However, the consequence of a teacher THINKING he's faking when he's not are worse than either of use could come up with. Give him the ice. Let him call me. I'll deal with that end.

Rule #2 - When in doubt, call me.

Rule #3 - Even if you're not in doubt, call me.

Rule #4 - If you don't like me, call his doctor.

Rule #5 - Don't mess with my kid. Don't single him out. Don't discuss his bleeding disorder aloud (with the class, other students) unless you have his explicit permission.

I think it's pretty easy.

Let's hope their teachers do, too!