One of those days

You ever had "one of those days?"
It seems that in 2010 I've had more of "those days" than not, which makes me think that perhaps the expression is no longer valid for me.

Not that I'm complaining, because it is life. I am learning and experiencing every day, whether I want to or not. One of my dearest friends that I don't get to see often enough (like them all) recently mentioned the "interesting" life I have.

Having a series of "those days" apparently leads to "interesting."

My day today was in the "those days" category; although it's not really out of the ordinary for life as I've come to know it.

My 7 month old baby has begun to cut a tooth. His misery has further cut into the very little sleep I had been getting, so when the alarm rang at 6 a.m. to get out of bed I was not a happy camper (even though I had just by lying there since 5:30 when I last nursed baby).

It was a fast and furious morning, as it always is, to get everyone dressed, medicated, fed, teeth and hair done, winter gear on, bags packed, etc. etc. etc.

I dropped of my eldest at Kindergarten. I had forgotten my purse, so the middle child and I went back for it. I then meandered a strange way to his preschool as my mind took me inadvertently to his daycare first (even though four days of five I take him to the preschool location).

At preschool dropoff, I ran into my Dad's hair-twin - he reminds me so much of my Dad - and I hadn't seen this guy in weeks. "White Christmas" was playing on the radio and I proceeded to cry all the way to work.

I get to work 2 minutes late. I scurry as quickly as I can on projects and leave work one-and-a-half hours later to get my eldest to her appointments. We get into her audiology appointment 15 minutes late due to their patient load. We got into her ENT appointment two hours late. And although she was missing school, missing lunch, bored out of her mind in this non-kid-friendly waiting room, I am quite proud of her behavior. If we didn't love this doctor so much, and if she wasn't so highly recommend and even touted as the best in the region, and if there was any chance in hell I would've been able to get another appointment with her before June, I would've left.

She's been off antibiotics for a couple weeks and she has yet another ear infection festering and something brewing in her sinuses too. After lengthy discussion over my eldest's year (and previous history) it is decided the best route is ear tube surgery, a possible adenoid removal, and a possible nasal lavage.We have been through all this with our middle child a couple of times, but with his adenoid removal, he was overdosed on a pain med and coded. There is nothing like holding your lifeless purple/blue child while chaos moves about you. Although I know it's the right step, and our daughter's Kindergarten teacher is so glad we're finally doing something, I get a knot in my tummy each time I think about it.

She and I both missed lunch, and she so very much wanted Subway, so we quickly did that together.

I drop her off at school, get back to work and fly through as much as I can for one hour. It is then time to pick up my daughter as school is out. She is wearing holy, worn out jeans that are about 4 sizes too big. She had her first "accident" at school because she chose not to listen to me when I said "first thing you do when you get to your room is go to the bathroom." Great, that means extra laundry tonight because these pants aren't ours, and her snowpants got it too because she was out at recess. Oh, and everyone's laundry was done, except for mine which I needed to do so I have pants for work tomorrow. Laundry, the joys.

We come home and I pump as I am still nursing baby and I've neglected this chore since 6 a.m. We then head out to daycare to get my middle child for his speech appointment. He was about to go play in the snow with his class, so I practically dragged him out - much to his disgust. However, this worked out well as I was able to get speech in for him and pick up my daughter's newest prescription at one stop. I love efficiency.

Then it's home to a pot roast that's been slow cooking all day. It was frozen at 7:30 a.m. and I can't remember what I put in it. To this day, I don't think I've ever done a roast the same way twice - pretty much try anything I can find. So far, so good. Perhaps you just can't screw up a roast.

Pot roast, spaghetti and thin cut green beans. A nontraditional combination, but it's all stuff I know I can get everybody to eat. By this point, my middle child looks and sounds like he's not feeling well (and how could he be with everyone sick everywhere we go?), so an executive decision to keep him home from Kindermusik is made. With that, it's dishes and kitchen clean up, three baths, discussion on baby's mystery rash, snacks, a breathing treatment, nursing...and all three are so tired that we didn't even squeeze in a bedtime story. Good thing my daughter and I had down time during the speech appointment to fit in two books, not to mention the only two they had as we waited forever at her appointments today.

I entered a few more orders to the party I am closing tomorrow. I did quick free "Santa" video links for both of my big kids, which I almost wish I could go wake them up to see! And I have now been telling myself to go get my work computer and file out of the van and get moving. I have to turn a huge project in tomorrow so there is no way around it...yet I sit and type this. It's not an incredibly interesting post. Just simply a snapshot of "one of these days" in an incredibly busy, interesting, quite average...and yet blessed existence.

Most every day is like this. Jam packed full of stuff, and yet I can never get everything done that needs doing.
And usually there's always a few extra hoops added in just for good measure.
But I think that's the course I'm meant to be on.
And I get my some pretty cool highlights that are my favorite parts of each day...hugs, kisses, laughter and amazement.
I can always find those gifts in even the worst of  "one of those days."

The Word

I'm tired of the "R-word." It comes up far too often and I get so tired of trying to make judgement calls on eductating the current ignorant person or not. I found this portion of a blog I wrote in February:

The "r" word is such an annoying thing. I was one of the most ignorant people ever as I didn't get it either. It was never brought to my attention that the way we used it was wrong - and I obviously never took a moment to even think about it on my own. I feel so bad for the years that I used it.


 "It just means 'slow' - I can call people/things 'slow.'"


It is so abundantly clear to me now. I really don't understand how I didn't get it before. To call someone or something "retarded," you are clearly trying to put that person or thing down. You are making a derrogatory statement against them and the best insult you could come up with is "retarded." That is saying the person or thing you are referring to should feel bad that you've hurled this "insult" against them. That is saying that the people who are intellectually challenged and actually have this clinical term attached to them are less than you, are a part of our society that is lower than those who don't have intellectual challenges. How in the world is that fair? People with this disabiliity have done nothing to you, did not ask to have this disability and don't deserve to be treated like second-class citizens.


I get tired of hearing that we're "sensitive" - really? It's no different than the "n" word for African Americans, or calling things that you think are stupid "gay" - or any other word that shows complete disrespect for other human beings. Whether we understand others, or agree with how they live their lives, doesn't give us the right to make fun of or disrespect them. We're all here to help each other and make our short experiences on this earth as good as possible. I hate that human nature is to be ignorant and negative.

There is a world of difference between a person who makes unintelligent choices and a person who has a disability.
I know that when that word comes out, and I am in the group, it is up to me to step up and say something, and most times I do. But I also wish that just once someone else that is not me or my husband would put themselves in the uncomfortable spot of helping to educate on this topic for the sake of a better future for Grady and other people with intellectual disabilites. Maybe it happens within our circle when we aren't around. That definitely could be and I sure hope so, but I would be so very grateful if someone in our group would start the dialouge first for a change of pace. There's just something so energizing about knowing that someone has your back.

It is our job to be the best advocates for our son that we can be. Educating the educatable (I've learned that it is an unfortunate truth that there are some people that are a complete waste of time in this arena) is part of that job. It sometimes gets so mentally and emotionally exhausting.

Anyway, if you happen to be reading this blog, do everyone a favor. Do a self check before words fly out of your mouth. Do they mean what you think they do? What is your purpose in the words you choose? Are you being hurtful to anyone by choosing to use them? Don't teach your children the missteps you've used for so long.

The world will be a better place when we stop using other people's disabilities as "funny fodder" to put other people down.

Right Answer Please

My daughter returned from a long, fun weekend at Grandma's. One of the first things she said to me is, "My throat hurts." Great, because she's still on antibiotics (third set) for ear and sinus infections that have been around since at least September. She's coughing a lot more and harder too.

And "great" because her baby brother has a sore throat. In fact, they're growing a culture to check for strep as I type. I took him in for pink eye (as I wasn't sure if they do antibiotic drops in someone under one, everything I read gave contradictory answers). I learned that he has an ear infection and a very red throat. I guess it doesn't surprise me looking back as he has been fighting a cold on and off since his baptism in September, and his sleep and eating has been weird the last few days.

Then there's my middle child. He's snotty, has been ever since he got off his second round of super-antibiotics for a weird super-bug, but they assume this "cold" is something different since there isn't any fevers or other stuff. But his chest is a little raspy and he's coughing more, sounding junky more. They have given him the label of asthma because when Grady gets sick, it ultimately leads to wheezing (coughing) and rattling meaning congested or contstricted airways. It's not induced by exercise, basically having a cold or respiratory illness brings it about in most cases with him.

So that seems to be the common denominator. A cold.

My oldest has been tested for allergies, and we are going with the notion that our middle one has them, too. Those things can irritate them and get them started or basically make conditions favorable for cultivating a bug really well.

There are over 200 viruses that can cause a common cold. And they thrive in daycares and schools - where my kids are! Those colds cause bigger problems in my kids. Like ear infections. My daughter had a few as a baby, and has had a few a year since then - this year being the worst.

Ear infections are common in infants and children, in part because the eustachian tubes become easily clogged. If the eustachian tube becomes blocked, fluid can build up. When this happens, germs such as bacteria and viruses can multiply and cause an infection.


Now the question is - what to do about it. I've read that in 80% of cases an ear infection will clear up on its own in 7-10 days. Not wanting to overuse antibiotics, I've waited it out with my kids many times...but it's never seemed to work. One way or another, we always seem to end up on them.

I just never know if it's right. I mean, you're supposed to trust the medical professionals, but it sure seems like a lot of meds. It feels like a catch 22 all the time.

I don't want to destroy their own ability to fight off bugs, but if they can't shake them...
And if I could get rid of all the bugs we're all exposed too all day long, I would - but there is no such thing, no bubble to put them in.

So I continue to ponder the right answer.
It will mean a call to the pediatrician in the morning to second guess the course the doctor today (Sunday) put us on.

But, with 3 sets of tubes for the middle child and a set likely coming for my eldest...we may just be on an inevitable path here with our baby.

I just wish that I didn't feel like no answer is right.
Sometimes doing your best as a parent just doesn't feel like enough.

Un-Fond of Fishing for Floaters

There's very little I like less than cleaning poop out of a bathtub.
As I quickly scan the list of nasty things I get to do as "mom," nothing is topping it at this moment.
It had been a good 20-some years since I had to do such a chore.

Then this summer, while my middle child was on antibiotics, it happened.
I had gone 5 years as a parent and never had to fish floaters from the suds.
But once the dam was broken, it seems to not stop.

Tonight for at least the fourth or fifth time since that horrible day this summer, I once again got to scoop nasties.
I did a ton of babysitting when I was little, and very little grosses me out, unlike my husband who first had to change diapers by pulling his shirt over his nose and gagging.
But poop in the tub does it every time. My tummy actually got a bit queasy.

And that makes twice this week, as two days ago, thanks to not listening to me, my oldest lost a fight with the shopping cart and ripped her nail right out. I can do blood to a point, but her finger is kind of mangled and I just can't handle seeing my kid in pain like that. I was queasy trying to take care of the situation.

But back to the poop.
Yes, I did set him on the potty before the bath, and yes he did go #1 and told me he was all done.
And although there was quite a bit in the tub, there was still more that made the pot as I lifted him from the tub.

So do I declare that a potty-training win? I mean, I did get the potty in the potty chair before the bath...and I did get almost half of the bowel movement in the pot...

Ahh...but alas. I did have a ton of it in the tub to clean...and as I cleaned he did follow up that fiasco with streaking which involved going potty on the bathmat and the kitchen floor. Where does all the pee come from???

So no. Not a win.
Ugh.
I don't even care tonight for a win.
I just don't want to clean poop out of the tub again.
I'm shooting for that.

Potty Progress

I think it's funny how elated potty-training progress makes me.
I'm pretty sure as a young girl, even when cheering on my little brothers, I never thought to myself that I'd find deep joy in something likes this.

Potty training my little man with Down syndrome has been an intereseting trip so far. It's competely up to him, as he's demonstrated over and over.

As of this week, I've sung silly made-up songs with him to "trick" him into giving up the potty and tonight it even worked to get #2 out!

For example: "Tinkle, tinkle in the potty, poo-poo and pee-pee in the potty..." (sung to the tune of "Twinkle, Twinkle Little Star")


It isn't the first time, but it is feeling (this week at least) that it's getting a little more consistent again.

And we even had one time this week when he woke up in the morning completely dry and went right away on the potty when we set him there.

I know that when he's done being stubborn about the whole thing, we'll have this hurdle checked off the list.
"In his own time..." I've heard and experienced that phrase so much since July 2007.

I wonder what life will be like when I'm not focused on "owie butt" prevention, diaper levels at home (school, daycare, etc.), who's gone which number a healthy amount of times per day, and timing, timing, timing.

Oh, well. I'll continue to delight, along with my little man, in the little things.
Even if they come in wet or stinky forms.

Life Lesson #72,568

You don't tug on Super Man's cape,
You don't spit into the wind,

and you don't take three kids age 5 and under for a successful family photo.
What you get at home is good enough. :)

*Much thanks to Jim Croce for the use of the above lyrics which have been in my head a lot lately.

Birthday Blues

Tomorrow I turn 33.
I'm neither here nor there about getting older. I'm pretty much where I expected to be at this age, so the actual birthday itself is fine, I guess.

But what the birthday used to be has changed. Who knew that little things would hurt so much when they're gone.

What am I missing?

I am missing my "birthday supper" I have with my parents each year. Each year since college, my parents would take me out for supper to celebrate my birthday. More often than not, it would be a steakhouse of some sort - and even though I'm not a large connoisseur of "meat," I never cared. Last year I was blown away when I picked Italian and my dad, for the first time ever that I had witnessed, ordered spaghetti and meatballs. He wouldn't touch pasta for the first 31 years of my life, and all of a sudden here he was with his unexpected order.

What else am I missing? The story. Inevitably around my birthday the stories of Houston, my birth, mom's roses and Dad staring at baby me in the nursery thinking to himself, "Holy sh--! I have to get it together. I have a baby to take care of." And how he used to set me in my chair in the middle of his electric racetrack and I'd watch him, and me in my walker in the apartment, and "Uncle" Joey and all these things I obvisiously have no recollection of.

And that's why it's so special. I don't remember any of it, but listening to him made it seem like I was right there. And seeing that it meant so much to him, that I meant so much to him, then and now, was something I looked forward to each year.

That's what I am missing this birthday.

Lonesome

LONESOME: sad or dejected as a result of lack of companionship or separation from others


Everywhere I am.
Everything I do.
You are there.

So far in the first 3 hours of today:
* My waking dream of the morning.
* The Little People display at preschool.
* Your “hair twin” dropping off his granddaughter.
* The music in my iPod.

I dislike masking my grief, mourning, sadness…
The only outlet in any given day is the shower.
And maybe a random pumping session at work – thank God I’m still nursing.
Life must go on, unbearable as it may be some times.

11 weeks is approaching.
I had never gone longer than a week or two without talking with you.
I had never gone this long without seeing your face.

I am lonesome for your voice. I am lonesome for your face.

I am so lonesome for you.

Buddy WHAT?!?!?!! Buddy WALK!!!!!!

We made it through another Buddy Walk.
I didn't know what a Buddy Walk was, like most people who may read this, until Grady was born.

Each year for the past 4 years that we've participated, the Buddy Walk has been difficult. Each year it's difficult for different reasons. This year was hard because it was going to be my Dad's first time of joining us for the Walk. He was actually looking forward to finding out what it was all about. This fact alone made the Buddy Walk tough on all of us.

The other thing that is difficult is just the feeling you get from your "team" and everyone who chooses to show up at the capitol that morning. When I say difficult, I mean the lump-in-your-throat-because-you're-so-in-awe-and-so-blessed-and-grateful difficult.

I'm in awe of the individuals with Down syndrome. Totally inspired by their love of life and love for everyone around them. Awed by their talents and abilities, and by the amazing circle of friends and family who support them (and really all of us). And I'm moved beyond words by those who join Grady's team.

I have a coworker and friend who is a repeat walker who came, and brought her boyfriend, on HER birthday. We have other friends who have walked every lap with us over the past 4 years. I have my family and in-law family who donate, walk, and support us all year. I have extended family like aunts and cousins, and this year even my dad's mom and brother, who travel just to be a part of this event. I have other past and present coworkers, friends of mine and my husband's...and they bring friends and family to join in!, and just so many people who I love so very dearly. All of this is completely overwhelming.

I learned something this year. It never occured to me that when I say "We're walking to promote awareness for the abilities of people with Down syndrome" - that others may not really get that. They don't live it like I do. But this year a very special group of people brought this to my attention inadvertantly.

This special group of ladies are some of my mom's good friends from my hometown. You just have to love, love, love being from a small town. Sure, these five ladies are my mom's friends...but they're so much more than that...they are
- my 5th grade basketball coach
- the reason I learned to ski
- the "party" location (for both my wedding shower and a Scentsy party!)
- the reason why I knew I couldn't be a teacher or lifeguard (I helped her with her daycare!)
- my confirmation sponsor
And I babysat for three of the five! These ladies are obviously so much more than what I've stated above to me and my family...as are so many of the people of my hometown.

These ladies got up at the crack of dawn (or probably before) and drove here (3 hours) to be part of this event. They just wanted to support us. And so they did. And I am so eternally grateful to each of them, as I am to every single person who joins us each year.

They really wanted to know about Down syndrome, understand the event, and they asked my Mom questions about it. I LOVE that. If you have a question, ASK IT. The best way for Grady and those like him to gain understanding and acceptance is for all the unknowns and misconceptions to be eradicated.

I learned that I have to do a better job explaining The Buddy Walk...but I don't think I'll ever be able to do it justice. It really is an impressive thing, that in its own right is quite...magical. It's one of those things that can make you laugh and cry in the same instant.

And the people who choose to spend their time taking part...THANK YOU. Thank you for being there. Thank you for being a part of our world. Thank you for the knowledge and experience you gain each time and spread with you as you go throughout your life.

If Grady's designer genes had never entered our world, we may not have known any of this - along with our friends and family. I'm so glad we can share this with them, and feel so blessed that they open themselves up to learning, accepting, loving, and supporting - no matter what.

Pneumonia and More

I read through months worth of Facebook posts and blogs.
It started as a quest to find old conversations with Dad.

What I found was an interesting history of Grady.
Grady sure has had a tough time with his ears and sinuses ever since we got the new tubes last December. He was kind of sick when we put the new set in and I just don't think they ever really got a shot at working for him.

We've had a long few weeks with him now...poor little guy.
He got out of the hospital early last week after a four-day stay for pneumonia. I've nursed Grady during some tough illnesses over the past three years, but this last one actually has been the most difficult. It went like this:

Shortly after Grady's birthday party, he developed a body-wide rash. It looks just like his "infection rash" (whenever he's sick he gets a rash over his trunk), but this time it was head to toe, so we thought maybe it was a heat rash or something he picked up in daycare. Then over the next weekend Grady's eyes started looking "sick." I seem to be one of the few who notices "the eyes," but they tell me every time.

By Tuesday, daycare called and he was pushing 101 degrees. I called the ENT right away, as we had already had 4-5 ear infections since April and they said if we had anything weird pop up to call right away.

We saw Grady's ENT who confirmed it was a double ear infection. And not just that, but one of the worst cases she's seen. The kind that "you really don't see in modern medicine" any more. She wanted to do surgery to remove the 2nd set of tubes to put in a 3rd bigger set and clean out all the infection. She gave us an oral antibiotic. We went back the next day and the antibiotic wasn't going to cut it, so she ordered 3 shots of rocephin.

This shot hurts...a lot. So much so that they mix it with lydocain to try to help with some of the pain as it's injected. Three days of this for my tiny little three year old. She also ordered an Xray as she was worried about pneumonia.

The pediatrician we went to see said it wasn't pneumonia and wasn't going to do an Xray, but would start him on the shot and told us to do our Albuterol breathing treatments twice a day with him. The shot that night was horrible. Torture on him, and his mom and dad.

The next evening Kai took him in for the shot only. Even more horrible because now our little man knew exactly what was going to happen. Kai came home and said he was not going to be able to do the last one because it was so awful!

It didn't matter. By the next day, Grady was covered in hives. Allergic reaction to the be-all-to-end-all super-antibiotic Rocephin. I took him in and asked to see a doctor. Covered in hives, grayish in color, wheezing and exhausted. They measured his oxygenation - at about 81-82%. That's bad. They want 90 or above, with 95% or better being the goal. Pneumonia.

He was hospitalized that night, but not before a breathing treatment, Xrays, a big blood draw for tests, a nose swab and a lot of things that scared Grady so much. They had him at 2L of oxygen to start with and they were contemplating putting him on high flow that first night. It took four nights for him to get to a point where he could sleep and his O2 levels weren't dropping to a scary level. The 3rd night they also ended up hooking him up to a heart monitor as the oxygen monitor got a reading of his heart rate down in the 30s a couple of times during the night.

Needless to say, all of that was unsettling. We finally got released with a regimen of drugs and instructions to come back in a week to be cleared for surgery for the ears. I took him in a week later and although he physically looked better and had more energy, he still was wheezy, coughing and the like. The pediatrician did another swab, this time for bacterial issues, upped the current antibiotic dose and added on a second antibiotic, plus the continued two types of breathing treatments several times a day. Two days later we get the results of the swab.

"This is a very, very complicated situation," the pediatrician said slowly on the phone. Grady has a superbug. A bacteria that is resistant to everything, pretty much. At this point we have only two options. Start one oral antibiotic that is not approved for use in children (with some very scary possible side effects, some that may not show up for a long time after use) or hospitalize him again for 4-5 days on an IV antibiotic where he'll most likely pull his IV out and have to be traumatized over and over as they have to keep putting it back in.

Neither sound great. And the ultimate goal is to get him well enough for surgery. But he won't really be "well" until we can have surgery and get his ears, and possibly his sinuses, all clean and fixed. It's a horrible catch 22.

Who knows what he's been hearing, or not hearing, and for how long? And the scarred ears...will there be permanent damage and hearing loss?

And I feel awful that we've been pumping his already not-so-hot immune system full of antibiotics that did NOTHING but kill off his own good bacteria and helpful germ-fighting things. And as we go into this surgery I have to think about intubation and atlantoaxial instability, and his not-so-stellar performances with anesthesia and pain meds, and just the overall trauma that this poor kid has already endured and will be enduring again.

I'm scared to do the surgery; I'm scared not to do the surgery. We may show up tomorrow and they may say he's not well enough to be put under, but I think this is as well as he's going to get if we don't have the surgery.

I've been trying all weekend to put it in God's hands.
It's ultimately where I've put everything else in my life.
But I must have some unresolved issues with God thanks to what happened with Dad, because I'm having a hard time coming to an okay feeling about all of this.

The last time I felt like this before a surgery, Grady ended up being overdosed on a pain med and he coded. A breathless, lifeless, purple little boy in my arms.
I somehow knew that things were not going to be okay with that surgery.

Is that what I feel now?
Or is my angst over my Dad spilling over into this?

I guess I don't know, but will find out soon enough.
Something has to be done to help our little man get well.
I pray for his safety, for the skill of the medical staff, and for everything to be okay.

I pray, too, for my stable base of faith to return, because I'm not sure about getting over all of the known and unknown hurdles life throws at me without it.

Changer of the Toilet Paper Roll

For years now I've wondered if one of my main purposes in life is to be the Toilet Paper Roll Changer.
I grew up sharing a bathroom with three boys.
I changed the toilet paper roll most often of us all while there.

I went to college and had many roommates. The new roll often conveniently found its way to the floor or on the back of the toilet, but often not on the roll.

I now live in a house with a family who doesn't change the roll either. I can't really blame Kaitlynn, because she's five and those spring things can be tricky. However, I am quite certain that my husband could figure it out. I just went to the bathroom and there was the fresh roll, sitting atop a stack of magazines...just below where the toilet paper holder is placed nicely in the wall.

And at work...I am the one who, at least once a week, will change the toilet paper roll in at least one stall on 2nd floor. I'm not going to lie, the holders in those bathrooms are a bit tricky and it even took me a while to figure them out, but I've now become a pro because I'm not sure anyone else on my floor knows how to do it.

I believe there are two kinds of people on this earth. The kind who take charge, see a job that needs to be done, a way to make things easier and more organized for others, and they go right ahead and put that toilet paper on its holder. After all, that holder has a purpose - it was created solely to hold those rolls. If we don't allow the holder have the rolls, what a sad and sorry existence it has.

And there are the people who don't. They'll just let the roll sit on the cupboard, the floor, the back of the toilet, because it's easier at the time, or whatever the case may be on that day.

Some days, I really wish I could throw caution to the wind and just let that fresh, big roll of toilet paper sit in a spot not designated for it. Sometimes I wish I could just let go and rely on someone else to get that roll put into place.

And maybe I'm speaking metaphorically. Wouldn't we all like someone to take care of us once in a while, rather than perpetually be the one who everyone counts on to get the job done?

I sometimes think I would like that. But when the opportunity arises, and someone offers to do something for me, I totally blank. I have no idea what to ask for. I cringe at the thought of someone helping me out as I may appear lazy, incapable or some other despicable word.

And if someone did show up right now, wanting to help, I don't think there's a single thing I could think of that I'd feel comfortable asking them to do.

I guess, of course, they could change the next roll. :)

A Dream

Last night I dreamed of my dad.
He's been in my dreams a lot for several weeks, but last night's dream was of God granting me what my subconscious has been wishing for since my dad passed.

In my dream I begged and pleaded for just one more day with my Dad.
It started out so very sad with so much praying.

And the next thing I knew, my family was back in Cancun on the beach - one of my personal favorites of our family vacations.

Dad was lying on a towel on the sand, although when we were actually on vacation there were lounging chairs. In my dream he was lying on right side, his right hand supporting his head from his elbow in the sand. His soft, fine, salt & pepper (more salt these days) hair blowing a bit in the breeze and he's laughing. A big, hard belly laugh.

And we're all there. Me, my brothers and my mom. And we're telling "remember the time" stories. We're all laughing. It is warm, it is peaceful, and the only thing I hear is so much laughing - my dad's deep laugh sounding above all the others. His head tosses back in bouts of laughter, and his left hand slices the air as he dramatically recounts stories.

And then all of a sudden dad starts to decline. I scream, "No! Don't take him yet. I wanted a whole day!" Apparently I forgot to clarfiy that I wanted the full 24-hours, not just the morning or afternoon or whatever time of day it was on the beach. I was trying to tell my dad to wait. I was screaming at God that it wasn't time yet.

I was losing my dad, again, and I couldn't stop it.

And then I hear crying.

It's my infant from the pack-and-play at the foot of the bed.

For the first time in a long time, I'm thankful to awake in the middle night *again* with my son.

That interruption allowed my pillow to stay dry, for last night, anyway.

My Eyes

My eyes have seen enough for right now.
Actually about as much as I think they can handle at the moment.

I look at my eyes and where I used to see laugh lines, funny freckles I've had since childhood, and the inherited "family circles," I now see grief, hurt, exhaustion, worry.

It's been a month since losing my dad in a hospital very much like the one I sit in now with my son. The sounds, the smells...down to the bed that is so very much like the one where my dad took his last breath. Ultimately I know that we will work through this with my little boy, but it doesn't make the "getting there" any easier. And being "stuck" here doesn't make my desire to run around like a crazy person, screaming at the top of my lungs and kicking things, any less so.

My eyes have not seen real sleep since March. The "family circles" have become dark, sunken in pools of sadness and anxiety.

Just two days ago my eyes got to watch my beautiful little girl, my amazing first born, become a school girl. The day was compounded by so many layers of emotions. Immense pride, nervousness for her, sadness over seeing my "baby" grow up too soon, and hurt that I couldn't share this moment with my dad.

After her class began, I left the school. I began to tear up as I walked to the car. I called my mom to tell her about the event, and after I did that, I called my dad's cell phone because in that moment I wanted more than anything to tell him about "Kiki Haye's" first day of school.

As I listened to his voice tell me he was unavailable, I began a conversation with him in my head. My eyes let the waterworks run as this conversation unfolded. I could hear the excitement and pride in his voice back to me. I could hear him say like he has so many times before, "She'll be gone before you know it. It's sometimes hard to see it right now where you're at, but these really are the best times of your life - what you're living right now."

And in so many ways these truly are the best of times as I have the ability to be astounded every day by my little ones. And to be blessed with my friends and family. And at the same time, the continually compounding issues, losses and hurdles can sometimes cloud that vision.

I'm trying really hard to keep my eyes clear through all of this. My ability to do that made my dad proud, and it is what my kids need from me. Just two weeks before dad died he said to me, "I don't pray for Kaitlynn. She's just like you and she's going to be fine. I do pray for Grady, because I think he's going to need a little help."

So even as I sit here listening to my son's breath as he sleeps and watching his oxygen saturation levels with hope, I feel like dad is here, too, because like he said, Grady needs a little help.

My eyes are about to take a much needed rest, if possible, in a few moments.
As for everything I see in and around my eyes at this time in my life, I'm so thankful I don't have time to look in a mirror very often. Pity parties suck.

21 Days

Twenty-one days ago at this time I was speeding in my husband's car to Grand Forks, with my infant son sleeping peacefully in the back.

Twenty-one days.

Is it possible that much time has passed?

When I got off of work today at 3:00 p.m. I thought to myself, "Three weeks ago at this time I was debating about calling mom and dad." I was dealing with a lot of "grown-up, parent things" at the time. I really, really wanted to call them. But I had just talked to mom the day before and gave her a somewhat unhappy update on health possibilities of my son and I just didn't want to be "Debbie Downer" two days in a row.

I wanted to call them a couple times more from that time until I finally got a call from mom at 7:15 p.m. Funny, I thought, because so often my parents and I would call each other and say, "I was just thinking about you..."

It was the call I've been dreading basically my whole life. I think when you grow up in funeral service, and live half of your childhood above a funeral home, you get an amazing perspective on the frailness of life. I can remember saying from the time I was little that I wanted to go first because losing one of my parents or brothers might just do me in.

I realize now that the urge to call them was God giving me those nudges I get pretty much every day. He talks to me that way, but sometimes I just can't understand what it is that He's telling me. While I thought I was protecting them from my mood, I was really losing out on one last chance to hear his voice and laugh with him about anything and often times nothing.

I hear him: "Jamie Lynne! What do you know?..............Thank you so much for calling me."

I am profoundly sad, along with my mom and my siblings. Rightfully so, I guess. I've experienced a lot of difficult life lessons and even dealt with a lot of loss, but this is so different from it all. It's a hurt that is everywhere and in everything.

I just now finally made it through the hundreds of cards our family received. It was so heartwarming, but yet I still sit here with a swollen face and a tear-soaked shirt. It's overwhelming. It's so amazing to read all of the adjectives that friends, family and even just aquaintances used to describe my dad: sparkling eyes, unforgettable smile, fun, funny, compassionate, professional, well-liked, respected, charismatic, generous, one-of-a-kind, "good, good" man, huge heart...

It's heartwarming to hear such nice things. And I do agree with all of them. I'd add to the list: stubborn, sometimes selfish, talented karoake singer and story teller (even if the stories got bigger as time went on), sappy (cry more at happy stuff than anything!), interesting, prankster, fair, devoted, honest...

Another thing I read over and over is how my dad LIVED his life. So true. Sometimes as a little kid he seemed bigger than life to me. It's incredible, thanks to his line of work, how many people he touched over the years, and how his passing affects so many. And just how many people considered my dad their friend. It is so amazing.

I never truly understood that before now, mainly because he was "my dad" before anything else to me. And as my dad I saw his pride in us kids and my mom, his love for speed and motors and tinkering with anything that was loud, his need for symmetry and straight lines, and so many, many "dad-like" things.

Seeing dad through others' eyes is maybe part of the silver lining to all of this madness. He was special, not just to us, and his memory will live on in many.

The past 21 days are a total blur. In all honesty, I'm not looking forward to the next 21 as I continue to wish I could fix all of this for everyone. It does seem so unfair, to all of us and those who haven't yet joined the family, but especially my Mom who should've had more time for adventures with her best friend.

In the same token, I am thankful that none of us has to get through the next 21 days alone. We have each other, and an unbelievably wonderful collection of family and friends.

"If it hurts you to look back, frightens you to look ahead, then just look beside you. . .he is there."

Helpless

Life.

You're throwing us a curveball again...and I hate it.

Pain and suffering is a very real, and apparently neccessary, part of life.

I am so very helpless in this moment. I want to take my dad, rip out all the cords and machines and have him take me for a ride in Mr. Jeep, which sits so very lonely right now in a meticulously kept new garage.

In this, my parents' new home, my dad is everywhere...from the anal "north" and "south" descpriptors above the garage door openers to his glasses sitting here next to the computer. The picture of him and I on my wedding day in his room drives a dagger into my heart each time I look at it.

So why do I keep looking at it?

Because I don't know what else to do. Because I'm bewildered and unbelieving. Because I'm scared out of my mind.

I'm scared of not having my dad. I'm scared of my brothers not having their dad. I'm scared for my mom to lose her best friend of over 35 years.

They say he's out of pain now that he's completely unresponsive, but I know he suffered such great pain for at least 24 hours before they could start helping him with drugs for the pain. I can't tolerate that thought. I hear him in my head over and over, "Jame, your 'old' dad is pretty tough and can handle it."

But I never wanted him to hurt.

And at 56, he is so very not "old." And this is so unfair. And none of us are ready.

And even though we've already gone against his wishes once and put him on life support today until my brother could get here, at least for the time being, we are faced with no right answers. There is no "win-win" here. It's simply trying to weigh our own selfishness and fright of a world without him (along with tiny, probably meaningless glimmers of hope) against his personal wishes.

How can any of us be okay with just letting him go? It is against ever fiber of our being to stop fighting for him.

Even though the stroke robbed him of his ability to speak, he told me he loved me last night in so many ways. I am so grateful for that time, many people don't even get that...including my middle brother. He was robbed of an "official" last few moments with our real dad, not just the one lying akwardly in an ICU bed with a machine pumping air into him. It seems as though our real dad left us this afternoon and my subconsious is playing mean tricks on me as it tries to find him anywhere, in that bed, in this house, in my memories that won't stop flooding my head.

I am angry with this situation. I am angry with arrogant health professionals, confused direction, and the magic stroke drug that really helps 30% of stroke victims if administered in the first 3 hours. Why couldn't dad be in that 30%. Why is it that when there's a slim chance of anything else, like Down syndrome or atlanto-axial instability or allergies or whatever...we can win the freaking lottery. But when we're praying to be included in that 30% it's just too much to ask.

My mom, a constant source of inspiration for me since I can remember, has been amazing. She didn't ask for any of this, and she has responded instictively and intelligently from dad's first slump in the chair to tonight - when at 2:00 in the morning, her now somewhat distraught daughter who up to this point has held it together as best she could, calls her irrationally hoping that dad woke up to say, "Hahaha, I sure got Jame good with this one. Let's go home!" She tells me to sleep, always the mom protecting her "young" even though she knows me well enough to know it's a futile attempt.

I am grateful for my dad's wonderful nurses and Dr. Roller, a neurologist whom my mom feels she can trust. I am grateful for the amazing support of our "circle" of friends and family. I am grateful that we all can be here for my mom, and for my dad, and I know he feels our love enveloping him. I am grateful for an amazing husband who just handles life for me when I absolutely need to check out. I am grateful for the 32 amazing years I had with my dad, and am feeling guilty that I'm the oldest kid to be able to have those extra years...hours...minutes with my dad that my brothers didn't.

I am grateful that I was given the gift to be "his lit-tul girl."

I just want one more hug. One more kiss from him on my cheek. I just want one more "I love you."

I just want to wake up from this nightmare and for this state of complete helplessness to go away.

I love you, dad. Besides expletives, it is the only thing I hear in my head over and over and over.
I love you, dad.
I love you, dad.
I just so love you...

Pay it Forward

On my 4+ hour drive home from Grand Forks this weekend I was writing my next blog in my head. I think that I have finally been able to find words to depict so much of what I want to write about regarding motherhood again after special needs has entered your world.

But then something else happened.

It was an ordinary stop at McDonald's in Jamestown. Cooper was sleeping and I had lunch in the late morning with my folks - so I was hungry. I pulled into the drivethrough - which in that town has two lanes. It was a very slow process. The van in front of me had a bumper sticker that I pondered for a few minutes.

Mary Kay
enriching women's lives

"Really?" I thought to myself. "How does that work? Does makeup and pedicure kits and the like really enrich a person's life? Or maybe by selling it you add to the bacon you bring home, so that enriches your life? Or..."

A whole bunch of different scenarios were running through my mind along this train of thought.
Yes, this actually is how my brain works.
I am very literal when it comes to words, people.

I had my $6.36 ready to go to pay for my meal. I pulled up and the young man at the window said, "Oh, no. The car ahead of you paid for you."
"What?" I asked.

"Yeah. I don't know why, but they paid for you already."

"Really? Um...okay...I guess. Uh, okay." And with that I drew my hand back into my window and pulled forward slowly.

What do I do? Do I know these people? I think that's a lady driving with dark hair and sunglasses. She peeked at me through her side mirror as I was trying to pay. I should get out and go thank her. Will she be freaked out that I'm leaving my car in a drive-through? Ah, where are my shoes? Okay, shoes are on...oh, crap...I have to pull forward. Ok, wait lady just hang out there I'm going to run up there. Oh, no! You're taking off. I have to move forward more. Which way is she going? What is that license plate number? K, got the number...pulling forward...

I try to hand the girl in the second window my money.
She smiles at me, wondering what my deal is.

"Oh, no. Sorry." I bring my arm back into the car and take my bag and drink from her. I look ahead and the van has vanished. I don't know which way she even turned.

I pull into the next parking lot and just think.

What was I supposed to do? That was a total random act of kindness...a pay-it-forward moment. How cool. But I blew it. I bet she wanted me to pay for the person behind me?

Instead, I did nothing. I was totally dumbfounded. I was in shock.

So, I called my husband about figuring out who this person was to thank her, which is probably the last thing she wants.
I contemplated for at least the next half an hour about how I was going to do a random act of kindness to a total stranger, which I found out today is trickier than you would think.

And I thought about how, in the middle of such complete nastiness in the world such as war, disease, suffering and more, that there is also so much good.

This simple act really affected me. And I too will pass it on in some random way.

How lucky I was to receive this kindness.

Carpe Diem

Carpe Diem. Seize the day.

I have loved this quote ever since hearing it for the first time in "Newsies", a Disney musical movie I watched in Mrs. Mohs' music class.

I got a free expression from Uppercase Living (vinyl art) and the one I chose was "Carpe Diem." That was well over a year ago. I just found it again. I had envisioned a big project back then, but when I found it I thought differently. I decided it should go into what is now my favorite room of the house. The front sitting room. It is full of sunlight, no TV, no noise and I spent so much of my late pregnancy there working and trying to find calm. It is now my favorite room. Above the big windows I hung "Carpe Diem" in a soft silver. It's a perfect spot as every time I walk by those windows and smile into the sunlight, I look up and see that saying. My goal is to have it be a reminder each day to me and my family.

But I have to say, since I put it up it really has only made me laugh.

Case in point.
Last week I got Cooper signed up in the gym's daycare so that after I took big kids to daycare for the morning I could go work out. I printed the class schedules and highlighted the ones I want to try...Zumba, Bodyflow, Bodypump, etc. After 6 weeks of nothing but no sleep, poopy diapers, sick kids, traveling...not to mention the months before this maternity leave of long pregnancy, hard labor, tons of work both at work and at home...it's time for me to give myself an hour up to three times a week. I want so much to get healthy, take some weight off and hopefully feel better (especially my knees!). Everyone says, "You have to take time for you," and "You have to put your marriage first and take time together." I wonder what kind of world all these people live in. But then, that's another blog topic.

Anyway, so I was poised and ready to attend Step or Bodypump on Monday morning. Actually, I was looking forward to it. And believe it or not, I felt that way BEFORE Kai's grandpa called me "the bigger girl with dark hair" and his grandma poked my tummy and asked, "What's this?" over the weekend.

But alas, all my planning was in vain. Grady has strep throat along with a double ear infection. He has had fevers up to 103 before we get them to come back down. I wonder how far they'd go if we'd let them. But he is simply miserable.

46
That's the number of days between doctor visits for Grady, for the same thing - ear infections that cause complete misery. That doesn't take into account the 2 weeks it took to get him well after the first antibotics (and the week of fevers and sickness before we went in that time too).

As I was getting my baby from his chair to nurse after giving Grady some ibuprofen yesterday afternoon I glanced up at my saying. Carpe Diem. A strange mixture of emotions took over.

Frustration that no matter what or how hard I try, there is no way I can take time for myself. It just doesn't work, and with one more, I expect it will be years.

Sadness that my kids seem to have so many issues all the time. Sadness for them because it's just not fair.

This day, like the many before it since I hung that saying, I had no ability to Carpe Diem.
Can I seize the day with baby puke all over me, and even pee half the time?
Can I seize the day when no matter how many attempts I make I can't get a shower all day?
Can I seize the day when I look at my incredibly long to-do list and know that I may never accomplish half of it?
Can I seize the day when my maternity leave will be coming to a close and I'm wondering how I'm going to add work into this mix, not to mention work while brining my infant with me?

And then I laughed.
Carpe Diem.
That's what I do every day, and always have.

As I wallowed in self-pity for a short time, thankfully that new thought emerged.
I can't seize the day by doing what I want when I want, I can't seize the day by putting myself first, and I can't seize the day by scaling mountains, taking cool trips, or accomplishing huge feats.

But every day, no matter the circumstance, I put my best foot forward. I try to make it the best day I can and I try to keep a positive attitude.

I think that's the real meaning of Carpe Diem.
Seize the day - do the best you can that day with what you have, and be thankful for getting yet another day here with those you love.

Frustration at Its Finest

Tonight I sit at this keyboard on my couch.
I am watching my nearly 4 week old son sleep...then not...then sleep...then not.

I am frustrated.
I am frustrated because I am too tired.

I am frustrated by how hungry my baby is at this time of day, when it is a struggle to get him to be awake enough to nurse both sides all day long. I am frustrated that he is a difficult baby to burp, and therefore he gets tummy aches and pukes...and then needs to eat a bunch more.

I am frustrated with the fact that he needs only me so much. But if I switch to formula to even the care duties and sleep, I feel like a failure and a bad mom for not giving our son my best. I am frustrated by the fact that I am feeling so selfish about this rught now.

I am frustrated by my long list of projects I'd like to do, or we'd like to do, or more so the inability to get anything done these days.

I am frustrated by myself for thinking there would be opportunities to get things done. I knew better.

I am frustrated because our outing at our friends tonight went about as well as it did last year when we tried it. Which, by the way, is not well. I wonder if we will ever get to the point of other families where you don't have to have constant vigilence...

I am frustrated that as the oldest, Kaitlynn so often gets the short end of the stick. I was in her shoes once and it bugs me when she's rightfully discontent.

I am frustrated that I have so much to get out of my head. I want to write so much about Cooper's birth, and what's rattling around in my head about that. Some of it is complete craziness, some of it is fear, some of it is amazement and awe...all of it is very real and my fingers want to unleash it from my brain.

I want to write about my last ever vist to Maida and Jack's Bar - a business my grandparents took over in 1964, with my uncle running it from 1986 until now.

I want to write about saying goodbye to my childhood home - and watching my parents things being sold at auction from our lawn. About the feelings that come with watching a "kid" you used to babysit, along with his wife and one-year-old, wander through "your" empty house as they dream about soon making it "theirs." About the odd serenity of spending one last night in a big, empty house alone...with a fussy baby by your side and a floodgate of memories running through your head.

I want to write about my son, his amazing progress lately despite the Down syndrome, and our incredible "itch" to have him talk. Things are difficult with 3 under age five...when 2 of them don't speak.

I want to write about our first IEP meeting with the school district.

Someday, I hope to be brave enough to write about a dark spot in my life - and what it is like trying to cope with it when others don't understand, and I'm continually forced to "handle it" with grace.

I want to write about all of the "lasts" I've experienced in the past three and a half weeks...my last childbirth, our last child entering our family, our last PT visit with Sharon, my last trip to Maida, my last trip "home..."

I am frustrated because I don't have the time or energy to let everything in my head flow out my fingertips. And so, day by day, more blogging piles into my head. It's like a manuscript of my life as I live it...a narrator droning on in my head.

But even with the exhaustion and frustration, I am grateful. This is my life. And it really is a good one.
I am going to attempt bed now, and I fully expect to wake up on the right side of the bed tomorrow, or probably several times with a hungry baby!

I'm Not Stupid...

I am a rational, competent human being. Over the years, I've learned that medical professionals can make me feel like I'm the complete opposite.

This week has truly been a week from hell. On Sunday, my daughter began having hives. This followed the previous weekend of fever, inscessant coughing and runny nose. She was miserable the weekend before. As we ended the second weekend, she seemed to be feeling better, but then she started with these hives. Monday morning, I wasn't 100% sure what they were and I wanted to make sure she wasn't contagious before she went to daycare with the other kids.

We went to her pediatrician. The one we've had since Kaitlynn was a baby has never had children, up until 2 years ago. She's very black and white, and what she says goes. That's pretty much her attitude, even though she's quite laid back otherwise. I've enjoyed talking to her over the years as I generally felt she made time for us and, for the most part, listened to my concerns. Or rather, her nurse did. I loved her nurse - "Melanie." I'm pretty sure we stuck around for her. She's been gone almost two years now.

On Monday, my daughter's hives looked a little bit more like chicken pox with a few weird thick spots. Her doctor found that she had a double ear infection, and said she had hives. Nothing more we could do for those but to continue the benedryl we'd been giving her since the day before. She put her on an antibiotic for her ears.

By Monday night, they were intense...and Tuesday morning they reached "absolutely ridiculous." They covered her entire body - in between fingers and toes, in her hair, up her lip...and they weren't little. The welts were unbelievable. I continued the benedryl as directed. That day was rough. We dropped Grady off at daycare and a little boy from her class saw her and was freaked out. She stayed home, and even went to work for awhile, with me.

The benedryl wasn't cutting it. We were putting ice packs on her feet because it hurt for her to walk and bend the skin around her feet. It hurt for her to bend her knees (the backs of her knees were covered).

I'm not sure what terminiology I should use for day 4. We woke up Wednesday morning and they were insane. We had started a food journal from the previous Friday on just the night before for her. After having not slept for many nights as I am basically 9 months pregnant, and dealing with my son's respiratory issues - when he gets a cold, it's never just a "little" cold (in fact I just took a break from this blog at 3 a.m. for benedryl-D and an albuterol breathing treatment for him)- waking up to day 4 was about all I could handle.

I had an OB appointment early Wednesday morning, but I called the pediatrician again and left this message, "This is riduculous. She is getting little to no relief. It hurts her to walk. They are covering her entire, and I mean entire, body - obviously the benedryl isn't working and there MUST be something else we can do. Please call me ASAP, I am very concerned and I just don't know what to do."

I was very concerned because I couldn't figure out what was the cause. Many times you just can't figure it out. But they just got worse, and now they were at her mouth. Was she continually reacting to something at our house? Would she eventually end up in anaphylactic shock?

I gave her benedryl. She wanted to go to daycare/preschool as it was library day. But she said to me, "I'm worried. I think they'll be scared of me." Her teacher tried explaining to the kids what was going on, and brave little Kaitlynn stood up and answered their questions really well. My heart broke for her in that she had to deal with all this unwanted attention, and was incredibly proud of her at the same time for her strength and ability to handle the situation.

Kai and I went to the OB appointment. 70% effaced and dilated to 3. Great. Really...any time. And I have two really sick kids. And my pediatrician is NOT calling me back. Perfect.

I lost it. My rationality flew right out the window. My gut was telling me this was no ordinary case of the hives, that I needed to find relief or figure something out for her soon - and I couldn't get the pediatrician to call back. I called and made an appointment with another doctor for 1 p.m.

By close to 11 a.m. the pediatrician's new nurse called back. "I visited with the doctor and she said she had a conversation with you on Monday about how this could last for 6 weeks..."

I knew it. I knew she was going to make me feel like an over-protective, hypochondriac mom. Check her records. She hasn't been in forever, because I'm NOT that mom. I went into bitch mode.

I felt bad for the poor new nurse, Amy. It wasn't her fault. I was annoyed with the doctor. I explained things as detailed as I could and she could hear the anger and frustration in my voice. When I got off the phone, I was glad I was going for a second opinion.

The second opinion was great. We reviewed her allergy information from 2 years ago. We went over everything in the last week. We discussed the antibiotic she was on that I was questioning. He started her on Zyrtec along with benedryl and switched her antibiotic. He told us to go to a bland diet and watch everything. I felt good. We had a plan and he listened.

Then by 2 p.m. nurse Amy called again. "I visited with the doctor again, and she thinks that Kaitlynn should see a dermatologist. I got one to come in early for you tomorrow morning at 8:45."

So I told her we just finished with a second opinion, and he got us all set up to see the allergist in just over a week again for follow up for her. But that I really like the dermatologist option. I wouldn't have been able to get an appointment for 6 months or better, but she got us in the next morning. I think she was taken back by the fact that we had a second opinion, but she knew I was thankful for her effort.

I wasn't sure if we'd go to the dermatologist or not, but I kept the appointment just in case.

I didn't have the baby, and Kaitlynn woke up on day 5 just as bad, if not worse, so we went.

I said, you'll see in her chart this is her 3rd appointment this week. Here are pictures from yesterday morning, here she is this morning with an hour's worth of benedryl under her belt.We covered everything and I ended with, "I just don't know what to do."

I kid you not. These were his words.

"This is what you do. With a case this severe, she obviously needs more help than the standard treatment. You NEED to get this under control for her."

Funny. That's what my gut has been saying all along.

We talked. He's pretty sure it's viral, related to her cold. He upped her Zyrtec and started her on a prescription anahystamine. What do you know...there IS something stronger.

I called nurse Amy and thanked her for her help and told her I thought we were on the right road, finally.

Day 6, a full day into the heavy duty plan - miraculously she's looking and feeling much better.

I hate feeling helpless. And that happens a lot in motherhood. I hate when people don't listen to my rational, competent self - making me feel crazy. And I hate when I have to pull the bitch card.

But I'm a mom. And I guess sometimes that's my job.

Ooooooohhh Baby

It's another sleepless night. I can't even believe I'm typing as my hands are half-numb with random shooting pain up my arms. This has been an interesting journey thus far. From being resigned to the fact that our family would be just a four-some as we moved into fall last year, to now, being just a couple weeks - or even days - away from adding another member to our family...it really seems like a total blur.

It's been a rollercoaster of emotions, at least on the days that I've been able to be aware that I'm pregnant. We're so busy that this pregnancy has just flown by.

It doesn't mean that I haven't had the opprotunity to explore my thoughts and emotions about it from time to time. Each ultrasound (we've had three) has been bittersweet. Each simple, beautiful memory that I reflect upon from Kaitlynn's birth is shadowed by the drama of the memories from Grady's birth. Nothing went "as planned" that night.

Maybe that's why this time it feels good not to have time to dwell on things or try to make a plan. Day by day is how I've moved through this pregnancy.

At my 33 week appointment, I went alone. This is the only appointment I've had to go to by myself this pregnancy. I've purposely scheduled my appointments so Kai and I can go together. He's always wanted to be so involved, something I really appreciate. The one time he missed during my pregnancy with Grady was the time I got the news about the EIF. The "nothing" EIF that actually turned out to be a foreshadow of our drama ahead.

This time at my "alone" appointment, I broke down. I told my doctor that for some reason my anxiety was getting the best of me, and it was. I hope and pray for a smooth and safe delivery, and for a "healthy" baby. A birth scenario not surrounded by drama.

"I know there's nothing I can say," she said to me.

"I can say that everything looks good. The ultrasound looks terrific. Your early testing checks out great."

I nodded as I cried.

"But, I know I said that with Grady."

I nodded as I cried a little harder.

"And I know that until you hold this baby in your arms, see him for the first time, you aren't going to feel just right about anything."

And it's true.

At 37 weeks I am not feeling overwhelmed with anxiety. I know that whatever comes our way, we can handle it - together. I still pray for my "drama-free" and joyous birth.

Last week, the ultrasound estimated this baby to be 7 pounds 6 oz at 36 weeks. My other two were a mere few ounces more than that at birth at 38 weeks (10 days early with each).

They think baby boy is going to be large.

This pregnancy is very different in so many ways from the others. In fact, I was measuring 40 centimeters at 35 weeks. Instead of being stretched too far with amniotic fluid, this time I'm being incredibly stretched by a big baby. My doctor does not want me to go to 40 weeks for fear of the size of this baby.

I haven't been able to breathe well for months now, but I start to see stars now without really doing anything. I've had carpal tunnel since Christmas, although in the last couple of weeks it's really kicked into high gear. I have fluid retention, it just doesn't want to leave. When I sit I often cut off the bloodflow to my legs and my feet turn purple and go numb.

I, by the time of this post you can tell, am really not sleeping. I've actually been awake more than asleep tonight, and it was the same story last night.

I'm already effacing and dilating, cramping with some very strong Braxton hicks contractions.

I wonder if my body is going to even make it another two weeks, and I pray that the grandmas are ready with bags packed to be able to head here at any time of day or night. They both are far enough away to be nervewracking.

But I am excited.

I am excited to meet this little boy, to find out who he is and who he will be. To have him join our family and watch his big brother and sister bond with him, and to watch his dad be amazed and proud of another little life that will complete our crew.

I am excited to be the best mom I can, again, and to feel my heart expand to even greater depths than I've ever known to be possible.

This thing called life never ceases to amaze me.

I am so blessed and lucky to await another miracle.

Winds of Change

I had planned to sleep in this morning. I went to bed early, right after my kids last night because of pure exhaustion. At eight months pregnant, I am tired physically.

I woke up to the sound of the toilet lid slamming shut. I planned to investigate, but by the time I could get myself propped up enough in bed to stand up, the pitter-patter of size 12 girl feet had sounded back to her room. "Good, she's going back to sleep," I thought. "She needs it."

I decided to get up anyway. I walked into the hall and that's when I heard it. Unbelievably loud howling. It's the winds of change barking at my door...again.

Everything around me is evolving, which isn't entirely bad. With change comes so much good. Like the change of seasons. Soon the grass will be green, my flowers will be up, and the sun will be here more often than not. That is good change.

At the same time, my work is in flux. People are retiring, an important program has been stripped, and there is going to need to be restructure, development and a lot of change. I work in communications, so that usually means that I get the job of trying to make sense of what's going on, and then help communicate that so everyone else understands what's going on. I've been doing that nonstop for two weeks and I have to admit I'm a little burned out from it all.

I just found out that my last trip home with the kids last year was actually my last trip home...ever. My parents are having their sale at the end of April, to be out of my childhood home by mid-May. Thanks to an impending birth, I will not be able to assist in any of it, or say goodbye to "my house" as I originally had been planning. I am sad about this, even though it's "just a house."

My husband and I have decided that as this new little one joins our family, that we will be complete. We can't afford, nor do we have enough hands or mental stamina, to take care of any more children at this point! So, as of today, we are making that decision official at a doctor's office. I am glad to be at this point, but it is an interesting turning point in our lives. Suddenly, I feel old.

And the kids. My goodness. Changes every day. I'm so blessed to witness them, but I kind of miss the "Dora" days with Kaitlynn and even sometimes the days before Grady expressed his opinion so boldly! :)

There's so much more going on, but basically the point is, everywhere I turn, change is happening around me. And for once, I'm not the stimulus making the decisions on any of this change. It's generally easier being the change agent.

In the midst of my mind-chaos yesterday, I had a delivery to my desk. I had placed my very first lia sophia order a little while back. A friend at work had a party I couldn't attend, but I saw this beautiful necklace in the catalog. It was small and not expensive, so I decided to treat myself with some of my Scentsy money. It is something I've wanted for a very long time, but just couldn't ever find quite what I was looking for.

Then it arrived yesterday afternoon. My beautiful sparkling silver necklace with a little cross dangling from it. It reminds me a little bit (only shinier) of one my mom used to wear. I put it on immediately.

Because of the timing, I am certain it was a message. As we are in the middle of Easter season, I'm to remember the changes and sacrifices Jesus made for me, and really, HE has my back. I'm not lost in a sea of change - in fact everything is happening the way it should, even if it feels like chaos now. It's several new opportunities for life lessons and I better enjoy the ride because no one knows when that ride comes to an end for themselves.

And as I finish this blog, I am noticing that things have calmed considerably outside...coincidence?

More Than Just "Services"

I first became aware of the world of Early Intervention services when I was in my early twenties as an education reporter for the local NBC affiliate. I learned much about Early Intervention and and the Early Childhood Education Program through our school district. And even though it was my job to learn about these things to tell a good story that helped our viewers understand our community and world a little better, I never could've grasped it all as well as I do now - on the "other side"with a child with special needs. Once again my different "lives" collide and all of that education I received then has come full circle.

I recently wrote this letter to Michelle,OT, and Carrie, Speech/Language, who work with our family through Early Intervention, and have since Grady was just weeks old. Sometimes those early days are nothing more than a fog of a memory, and other days I remember so well the feelings of being completely overwhelmed by it all. And even if Early Intervention was sometimes part of the overwhelming sensation, I am so very thankful it has been part of our lives, and even one step further - that these specific people have been part of our lives.

Letter:

I just wanted to take a moment to thank you for the work you do. Not only to help us figure out how to help Grady and function more effectively as a family unit where special needs are concerned…but for the assistance in advocating for us as well.


You both know how bothered I was by Grady being the only one in his class who didn’t get a choice in the cereal he got to eat a few weeks back. I felt like I should say something, but just left the center in tears instead, with the knowledge that we are going to run into this scenario in many different formats for the rest of our lives. I sometimes have a hard time distinguishing when advocating is most appropriate, and when I should just let my over-emotional self ponder the situation and realize that I can’t fix everything.

Anyway, what I’m trying to get at is that this morning the cereal was in the hall (we were running a bit late). Amy was out there too and as I got Grady’s coat off she asked him if he wanted cereal. He nodded his head, “yes.” I turned to hang up his coat with plans to lift him up to look at the cereal so he could choose which one he wanted.

When I turned back around, Amy was already doing that…asking him which one he wanted. He smiled at them all. I named Kix, Cheerios - didn’t get any further and he emphatically pointed to the Cheerios. She said, “Okay! Cheerios it is. Go in and I’ll bring some to you.” He was so satisfied with himself that he just proudly marched himself over to the table and sat down.

I am 100% certain that this wouldn’t have happened without your gentle encouragement with the staff during your visits there. To have them acknowledge his right and ability to choose was elation for me, but seeing what it did for Grady was some kind of wonderful I couldn’t have anticipated.

Thanks again. What you do makes a HUGE difference in this world.

Michelle,Carrie, and all who dedicate your professional lives (and very much personal, too) to helping us all in a very important and special way, you have my utmost respect and appreciation.

The Label

We are currently at a crossroads with Grady, our son with Down syndrome.

He will turn three at the end of July. This means that although I've finally grown accostomed to (and very, very thankful for) Early Intervention services for Grady, it is coming to an end. The next chapter opens, which means a whole bunch of testing on him and decision making on our part.

The decision making is not easy - mainly because we have no idea what we're doing or what we should be doing. Part of this process is deciding whether or not to continue with developmental disability case management services. There are two very different schools of thought on this, and we didn't know which was the right one to take for our son. Knowing that our case manager hasn't had to be overly involved with us for the past two-and-a-half years makes me think it maybe isn't important for us. But when you talk to other families and think about all the "what ifs," then you think maybe you should look into it.

We did go through with testing to see if he would even qualify at this point. It included an hour of testing with a psychologist whom we met in that moment, in a big, sterile, empty and unfriendly room. The doctor herself was very kind and did the best she could with the task that legislative bodies have handed to her. But it was a frustrating and disappointing hour as Grady refused to cooperate, and much of it was beyond his level of understanding. And with the testing, the child must fail in the same exercise four times before you can move onto the next one. Well, when our stubborn Grady says he isn't going to do something, once is all we need. He was annoyed with the continual push to do these things he already said he wasn't going to do.

After that I got to sit for another hour or so to answer a slew of questions about Grady and his development. It's an emotionally depleting experience, and my favorite question came at the end when the coordinator asked, "What age would you approximate your son to be?" Um...yeah. Two and a half, would be my answer. Developmentally, well...that's hard for me to say, isn't that why I'm here?

Kai and I met with the psychologist on Tuesday night to go over Grady's test results. She places him about two steps behind "average" development...officially giving him the label of "mild mental retardation."


There's so much to say about that. About the inaccurate tests they do, how they really should see him in his own environment, and how there should be tests that measure a more full picutre of the child. According to the psychologist, the wise beings who put law together here say that one can determine before the age of three what "developmental category" Grady falls into and that will be accurate for his life. She doesn't agree with this at all, and neither do we.)

I'm feeling like maybe we should've postponed this "official determination" until the school makes you do it age 8 where it should be more accurate. But at the same time, I don't have a crystal ball to anticipate Grady's future needs. If he is determined to qualify for case management and whatever else comes with that because of this label, it's one less hoop we have to jump through later if unexpected things happen and we don't know where to turn. And it is one less thing that anyone has to deal with should something happen to Kai and me.

As for the DD services, that remains up to a committee. The psychologist recommends continuing them based on his "official label," but we'll see.


I know there is no rule about where Grady will be or what he can accomplish, and that he will have a full and happy life no matter what the future holds because we'll do everything we can to make it so. And it's not like they told us something we don't know. But saddling him with the actual label feels so wrong and as the doctor put it, "really hurts your heart."

This is not easy. Each new phase brings about interesting new challenges. Thank God for Kai. I know this bothers him too, but I appreciate that he thinks a little less with his heart than I do.

I look at other parents that I admire and think, "They've done this. We will be fine." Somedays it just doesn't feel fine, though. And when I have those days, I feel like we're failing Grady. It sometimes feels like when we're faced with decisions and transitions, that no choice is quite "right." I wonder if it will feel like this for the rest of our lives.
 
I'm thankful that these feelings are "sometimes." I'm thankful that these "sometimes" equate to maybe a quarter of the time or less. And I'm actually thankful for these feelings themselves, because it causes me to take stock of where we've been, where we are and where we should be headed. And it reminds me to focus on what's really imporant!

Waiting on the Vote

Historical legislation is about to be passed tonight. It's the healthcare bill, which is tied to the student loan bill. Both are so intricately weaved together and complicated, in my opinion, that it's hard to find anyone who really understands the ins and outs of either.

But that doesn't stop ignorant people from throwing their two cents around, which sure creates interesting (and even hurtful) spin...correctness tends to fly out the window.

What I do know is that this legislation will immediately impact my place of work, and eventually some of the people who work there, possibly even me. There are just so many unknowns at this point, and that is an uneasy feeling. I know that the rest of the country doesn't understand the concept of our organization, or what a benefit having such a thing is for the citizens of the state. Our citizens get it though.

I know that the legislation, as it currently sits, is missing many, many, many important pieces to it because those who crafted it aren't involved in the ins and outs of it all. I know that here in our state, we seem to do things right, and I wish that we could just continue this without interference from those who don't understand us.

It's interesting that all of this has been going on for months, but just now people are becoming aware and trying to understand it, and it's now too late. Although I've learned that we humans generally choose ignorance until something hits us in the face and affects our direct world...much like our family with Down syndrome or the world of special needs.

It's been many, many long months of waiting and wondering, so I guess having the final answer tonight is a relief in a way, even if the chips aren't falling on our side.

However, I do think that years from now we will be at a vantage point of saying, "told you so"...and when it comes to the good of our people, that doesn't feel good at all.

Life Lessons and Happiness

We have a family blog. It helps to keep friends and family current with the happenings in our world. This is not our family blog.

This is MY blog.
This is where this 32-year-old, 33-week pregnant current mother of two, who happens to be an eternal optimist, can collect and keep track of her thoughts.

My life is incredibly blessed in ways that I cannot count or measure.
On the other side of the coin, like so many others in this world, it has been laced with large doses of pain, challenges and darkness.

As we await the birth of our third child and we raise two others, one which has Down syndrome, I know that the blessings and challenges are going to multiply exponentially.

And that is a good thing.

As an eager student of life for 32 years now, I appreciate every lesson I learn. During each situation that I find myself in, I pause to ask myself, "What am I supposed to get out of this? What should I be learning here?"

Every day, each challenge and triumph, offers a lesson - or builds upon one I've already learned. I am very grateful for these lessons. Sometimes I am fortunate to have instant gratification and the lesson is immediately evident, but more often the lessons reveal themselves in time. As long as I open myself up to it, the lesson eventually becomes clear - and I become a better wife, mother, daughter, sister, friend, coworker...human being.

I am a believer in the "everything happens for a reason" philosophy. I have witnessed God working in my life, and in the lives of those around me. As time goes by, most everything comes full circle and I can see the chain of events in my life lesson much like a "connect the dots" picture from childhood.

It's rarely easy, but the rewards from being grateful for and mastering life's lessons are priceless.
I believe it is the key to true happiness.