470

I am sick. I am in the room that you dubbed, "the cave," wishing I could sleep as well right now as you always did down here.

It's kind of awful when you can't sleep so you resort to Google searches for no reason. I can't do much else as every slight move is miserable.

It's even more awful when I search your name and all I get are the obituary notices. I'm missing you.

I found a neat calculator that says that it has been 470 days since I last saw your face.

I'm in a room that I dubbed as the "Grandpa Suite" on a bed that should be in Arizona, sick with a nasty  headcold, sick to my stomach with the tummy flu, and heartsick because 470 days is just so long.

Irony

God created me to be a communicative being.

I can do a few things well, but my one true stand-out gift is my ability to communicate in all forms. When this gift is paired with my perceptive intuition, it really is quite handy.

That is, except when dealing with my child with special needs.

I got a call this afternoon from the speech therapist at his preschool. One of his IEP goals this year is to be able to articulate. At this point he still only has a few syllable and vowel sounds, even though that has grown a little. His daycare teachers are asking the experts for help in understanding him, and giving him tools to express himself more with them and his peers.

My son is four. My 18-month old has more words than my four-year old does. It's not that he doesn't comprehend, in fact his comprehension is remarkable. His articulation, to put it mildly, leaves a lot to be desired.

I want so desperately to figure this out for him. I cannot stand seeing and hearing his frustration when no one around him gets him. I worry about his ability to bond and connect with others as they get older, and I worry about behavior issues that could stem from utter frustration on his part.

Something that comes so easily, naturally and completely without thought for me . . . and my son is on the complete opposite side of the coin.

It feels like a huge life lesson in the palm of my hand; it feels like irony sent from above.

Weirdness

My cell phone rings. It says "Dad" is calling me.

This has happened repeatedly over the past few weeks.

For less than a split second I have an energized, excited feeling of getting to talk to my dad and then reality quickly sinks in and I realize I will never have a phone conversation with him again.

I've been using my husband's old cell, so when his parents call my phone it comes up as "Dad."

It's a weird emotional state these days. It's still sadness, mixed with a constant mantra of "suck it up." I cried heavy and hard into an armful of his suits that we donated to goodwill a couple of weeks ago. I've been packing up and parting with his stuff for months now . . . but I couldn't stop hugging the armful as if I were hugging him.

And now the rocking chair that they gave Kaitlynn, that he so diligently fixed after it broke two years ago, is once again broken - this time beyond repair. He was so proud of himself for fixing it, but warned that it wasn't going to last long. The kids have been hard on that chair. It's incredibly broken. Yet I haven't parted with it yet. I took pictures of the areas that he fixed . . .knowing that it's one of the last "projects" he did for me. What in the world will I ever do with those pictures? Got me. But for some reason I need them if I'm ever going to be able to let go of the actual object.

Like I said. Weird emotional state.

It's a good sign that I recognize the weirdness, though, right?

It is so July

One year ago I was getting ready to return to work after maternity leave. That means one year ago was the last time I spent "real" time with my dad.


I took the baby and went to the other side of the state to see my parents' new home. My dad and I laughed as we hung stuff on mom's kitchen wall and tried to beat the young kids on TV at Jeopardy. Whether it is thanks to growing up in a funeral home, or from hearing my dad say my entire life that he wasn't going to live to be an old man, I have always had a hard time with goodbyes. I remember even with all the hormones being whacked out, that I was able to keep it together as I hugged each of them goodbye that Sunday. Of course once I drove away I allowed myself to get my sadness/anxiety over with.

July 21 was my last "real" conversation with him. I remember it like it was yesterday. He had left messages for me at all three of my phones. I called him back as I came out of an off-site meeting. I sat in my van and we laughed. He was incredibly jolly that day. I'm so incredibly thankful for that phone call. One regret I do have is the voicemail itself. I have a hard time deleting good messages from people I love -- again -- same as the goodbyes. I just want to hold onto those things. I remember sitting in that parking lot and fighting with myself about not needing to save his voicemail. It's something I've been doing for as long as I've had a cell phone. Eventually I do delete. But I usually have one saved from mom and one saved from dad. I fully understand this is weird and probably unhealthy to think like that, hence the debate in the parking lot that day. I decided to let it go as I felt I needed to stop being so anxious about that.

What do you know. The one time I win my battle with anxiety is the one time I wish I wouldn't have. He was so happy on that message. I wish I could still listen to it over and over.

July 4 was six years since my grandpa died. June was 14 years since my other grandpa died. Apparently summers aren't good for us.

July 23, shortly after 7 is when I got the call. Midnight is when I saw my dad in the hospital and communicated with him for the last times. July 25 at 6:44 p.m. is when he officially left us.

My husband asked me why I'm so fixated on all the "lasts" instead of all the happy things. He gets why anniversaries and holidays are hard, but he doesn't get the lasts. I don't have an answer. I am trying not to, but it just seems to be where my mind goes without my intention of it.

Some days it feels like it's been so long. Some days it seems like yesterday. And some days I still briefly have moments of not believing that he's gone.

I so miss him every single freaking day.

Unpeaceful Mind

An entire summer, and even fall of this. Really?

This is the strangest emotional rollercoaster yet. And I've had a lot of them.
At any given point I could burst out in laughter, tears, anger, anxiety...or all of it at the same time.

We are approaching Father's Day and I am crazy sad. All of these "firsts" without him suck so bad. Last night I had a picture of Dad up on the computer and my middle mainly non-verbal child made a sound I hadn't heard before.

"What buddy?"

"Pah . . .Pah."

Did you say "Grampa?"

He shakes his head yes. "Mmmmmm-Pah."

I gave him a huge squeeze and choked back tears and cried "Yes, buddy! That's your grandpa!!" We went to another picture.

"Mmmm...Pah. Ki...Ki." Yes, that's grandpa and your sister Kiki!

I can't believe he's gone. I hate it every single day.

And then this historic flood. A flood that not even Mother Nature herself could have created without human screw-up. Being on high-alert for weeks on end. Will we have a home? How will our community look one to five years from now? What will happen to our biggest and only investment? One minute I'm repressing any thought of it and living in denial that all is going to be fine by September. The next minute I want to put a "for sale" sign in my yard and move into a double-wide up north, or to a different community altogether to escape all the vacant faces, sandbags, water and stress. I miss the convenience of furniture.

The kids are well right now. I suppose by typing that I should knock on wood. Trying to figure out a birthday part for my girl who is about to turn 6. I am not ready for her to be 6. Who am I kidding, I've never been or probably never will be ready for her to continue to grow up.

Oh, and just for kicks and giggles, how about if I start a new very demanding job? That sounds like a great idea right now. I am so lucky. It is a really great job, with really great people . . . with horrendous timing. But when is the timing good? Just after your dad dies? In the middle of a month-long IEP battle for your kid? When one kid is sick for weeks and hospitalized, or maybe as you're about to undergo surgery for the other? In my world, there just is no such thing as good timing, I don't think.

And in the middle of it all I thank God for the unbelievable amount of blessings in my world. I ask him every day to help me remember that I am not in control and that His will be done through me and with me. It provides me with the calm I need . . . at least for a while until my mind gets sidetracked with all the distraction life brings.

"True peace of mind is not dependent on circumstances. It comes from the inside."

The Jokester

Everyone believes different thing about death, the spirit, life after, etc.
I believe that our loved ones are still with us, much as God is daily, and if you're carefully listening or watching you will get affirmation of that throughout your days on earth.

I believe life is carefully orchaestrated by a higher power, and I don't believe in "coincidences."
Do I have proof? Nope.
But I do have experiences that I know in my heart are my affirmation.
I think one must have a healthy dose both of reality and spirtuality to be able to live these experiences. You can't be a total crackpot, but you also can't believe there is an analytical or scientific explanation to everything either.

With that said, the following story sounds crazy. I readily admit that.

So, for Christmas my son got a "Leap Frog" musical barn with animal pieces. You match the front and back ends of an animal, place them inside this barn and it will make the sound of that animal and say what it is. There is a duck, a horse, a cow, and a pig.

I was having a bit of a down day, missing my dad, about two weeks ago. I had put ham in the crockpot for supper that night. As I was making the very first slice into the ham the toy made the oinking noise of a pig.

No one was playing with it and neither of the pig pieces were placed inside the toy. In fact, the back end of the pig is still MIA. I casually thought to myself, "Well, bacon is dad's favorite food...and he TOTALLY would think that was hilarious. But we probably just need batteries."

I mentioned it to my husband. It had never done that before for either of us. He agreed it was weird and we let it go.

A week and a half later my mom was here. The day she was leaving I was reminded of it, so as we were standing in the kitchen I told her the story.

"Hmm. I'd say it needs batteries," she said.

"Yeah. I'm sure people would think I'm crazy and not believe me. But I just thought it was weird that of all the animals it picked the pig as I was cutting into the ham," I replied.

And then, the pig noise again. It had not happened since the first time...and almost on cue, there it was again - - with no pieces inside the toy.

"Okay, well, I believe you," mom said...and we both laughed. We agreed that if there was any way Dad could be involved he' d be thinking he was stupendously funny.

And we let it go. After all, it probably does need batteries.

So tonight, just a couple days shy of another week has gone by.
I am reminded of the second weird occurence when I see it on the fridge, so I tell my husband about it.

"Hmm, that is weird," he said.

"Yeah. I mean, it probably is the batteries or whatever. But I still just think that it's weird that of all the animals, it keeps using the pig sound."

And again, as if on cue, the empty toy makes a noise all by itself. But this time it "Baaaaahs" at us.
It's the lamb.

Yeah, I might replace the batteries, but the toy itself works just fine otherwise. I just can't help thinking that my Dad just finished having a really good laugh about this.

Heartsick

I miss you more than words can possibly describe.

Crap hit the fan this month, and to not be able to get your perspective on it just about sent me over the edge. Or maybe I am over the edge.

I try to be strong, for you, for me, for everyone. I am trying so hard to "be the ball." But it all feels like an act most of the time.

Losing you permeates everything for all of us.

Last year at this time I was planning in my head the 40th anniversary party we'd have for you and mom in 5 years. I was with you as we said goodbye to our family home and watched so many things be sold at auction.

There were so many things ahead.

I miss thinking about the future with you in it. I miss your hugs and our phone calls.

I am heartsick to the very core.

Vacation...Seriously I Need You

Work is insane.
IEPs are stressful (if you don't know what that is, lucky you).
We have a crazy blizzard. Again.
My 10 month old, final baby, is showing early signs of toddlerhood...and mischief.
Potty training is draining.
Stress fracture, teething, raw bottoms, sinus issues, coughing.
Missing my Dad like mad.
Dieting and food education in progress.
Parent Teacher Organization
Keeping 5 people, a household, a budget, and work organized and running . . .
the list continues . . .
But bed and at least two interruptions to sleep await. The life of a mom.
I will miss all this one day.

Today I just want a vacation.

Large but in Charge

Obesity is, well, kind of an epidemic in my family.
Obviously it is in a majority of American families.
It's sad and it's one of the biggest contributors to the wide-range of health issues so prevalent today.

Now that I know I am done having kids, and I am finally done nursing...FOREVER...I've decided to make food a priority in my life. I am hoping that losing weight and keeping it off is one byproduct, along with a healthy nuclear family unit with a healthy relationship and understanding of food.

My dad was an "all or nothing" kind of guy. Excess was kind of the norm. I can remember when my mom would work nights and I'd be in charge of making lunch for everyone the next morning I'd often make tuna sandwiches. Dad used to tease me all the time that I never put enough mayo in it. Right now I'm mixing an entire can with just one tablespoon of light mayo -  and think of him each time I do!

Or I'd spend the night at a friend's house and be starving because for supper their food portions were much smaller than at our house - and a lot different. Fresh green beans from the garden and a salad took up the largest part of the plate,with meat and a starch coming in at a distant second.

I've learned that my friends had a much better understanding of the food pyramid than I did. That what I used to think was "eating like birds" is actually how we humans are meant to eat.

I've started a program that one of my friends was really successful with. It has me measuring all of the foods I eat, eating mostly everything fresh and cutting out all the "extras." I don't expect to be able to eat like this every day of the rest of my life, but I hope in the end I have a realistic idea of portions, I learn to eat less more often throughout the day, and I put more time and energy into whole and fresh foods for myself and my family.
I've been doing it for a week now and here's what I've learned:
1 - Being healthy is not just about tracking calories or fat. It's about the right food, in the right combinations and in the right amounts.
2 - I miss my indiscriminate amount of liquid creamer in my coffee.
3- Measuring is a huge pain in the butt. I hope to be able to be able to guesstimate the right amounts sooner rather than later, but for right now I am wayyyyy off.
4 - It's good to do this with my husband so we both gain skills and can commiserate about our unhealthy cravings.
5- I am sick of all the bathroom breaks you take when you drink the right amount of water per day.
6 - Eating healthier is harder on the family budget.

6- Between the better weather and eating better foods, I have way more energy and feel better!

And with the weather improving and baby getting bigger, more walks and outside play makes it even better.
With the right amount of education, time and attention, I hope obesity is something my family and I don't have to continually battle.
We shall see...

The Little Things

I just read a post from a facebook friend who lost her mom a couple months after I lost my dad. In short it stated that she disagrees with the "it gets easier with time" philosophy. It made me think of an e-mail I recently got from my childhood best friend, who was like another daughter to my dad, that said her husband still chokes at thoughts of his mom after losing her more than 10 years ago.


I would say that I whole-heartedly agree. "Easier" is so the wrong word.

In the past nearly four years that my son with Down syndrome has been in our world, we've learned to celebrate the hell out of everything, big or small. It's usually the littlest things that bring us the most joy. It is a wonderful gift to have that kind of perspective.

But on the other side of the coin, I'm learning that what hurts the most in a huge loss like my Dad are also all the little things.

It's things like looking to April on the calendar to see "Dad-57" on April 23rd and knowing he's not here to see that birthday. Or taking my 5 year old shopping for Valentine's cards and after she selects one for Grandma & Grandpa for my in-laws, having to steer her to the "Grandma only" cards for my side. It's in the fact that although this weekend is the 7-month anniversary of his death, I can't stop saying "my parents," "they," "he says" and everything in the current tense.

Or when anyone in my family is having an especially hard day and I can't do anything about it. Or when I run into my Dad's hair-twin at my son's preschool and all I can oddly think is "I just want to touch that hair."

It's in my baby's eyes and smile...I sometimes see him there. It is so wonderful and so sad at the same time, that sometimes all I can do is snuggle my baby in close and let out a tear.
There are about 100 little things a day that make me think of my dad. And one may think that that should bring some sort of peace.

I try to tell myself to be comforted by all the amazing memories that I have. After all, I am lucky for the time and the experiences I did have.

And while I'm doing that, I honestly can hear my Dad saying, "It's okay, Jame. You're going to be fine." But sometimes, more often than I'd like to admit, my own voice answers back in my head with, "But it's not f-ing fine, Dad!!!!!"

Oh, how he hates it when I swear. See, there it is again with the present tense.

The reality of his loss and the lonesomeness for him grows each day.

All the little things.

When people say it gets easier with time, is that because all those little things start to fade from your memory?

As painful as they may often be, there's so many little things I hope I never lose.

I'd Pick Missing Over the Miles...

Oh, this post from 12/20/08 hurts. What I wouldn't give to miss my dad because of the miles, rather than the permanence of death.

Next topic: My parents' retirement. Don't get me wrong - I am SO excited for them. They truly deserve it! As a kid, I can't tell you how many times we had plans to do something and then it would be cancelled. Uncountable really...and that's how they've had to live much of the last 30 years. Obviously their profession does not come with the predictability of many, and being on call 24-7 is very, very demanding. It's been a challenging and rewarding career and service to people, and they've done an awesome job. They truly deserve to find something else to do, and have a lot of fun while doing it. 

--Insert selfish statement here--

I however, am trying to come to grips with not having them just three hours away. I miss them when they're just that far. Now they're heading off to Phoenix in January, to return sometime in April. Yikes! What a strange next step for all of us!

Again, a perfect world would mean that all my brothers and my parents would be here in my town...but again, that's just my selfish side talking. Anyway, I'm looking forward to hearing the stress of their work slip out of their voices and to hearing about all their silly adventures to come.

I'm just going to really, really, really miss them.

Remembering a "Blizzard Past"

I finally am tearing down an old site. As I look back at more than two years of life on that site, a rush of emotions and thoughts hits me. This is one of my favorite posts from back then...and it continues to be applicable to this day...and probably forever.

1/11/09


Winter & Down Syndrome


A couple of days ago, I had what I felt was quite a revelation. If I were to discuss this revelation with my husband, it is one of those things that he would look at me funny and say, "Uh...O..kayyyyy."

Here it is. Winter and Down Syndrome are so much alike. Well, THIS winter anyway. Here's why:

I'm driving to get the kids to daycare. If I can just make it through all this snow...I know they must have plowed Wachter by now. I just need to make it to Wachter and we'll be good. I back out of the driveway and the tires spin a little. Dang it! I give it a little more gas and we go back. I take a breath and put it into forward. I am stressing about getting stuck with the kids in the van with me...and I think, maybe this really is too deep. Maybe I should wait for plows. And I look up - what do I see- YES! Salvation - a PLOW!! I wave, perhaps TOO vigorously at Mr. Snowplow Operator. I'm waving like I see my best friend whom I haven't seen in years. But I just can't help it - I am SO overjoyed to see this snowplow.

This scene is played over and over and over this winter. And yet, the snow just keeps coming. And I sometimes curse the snow...and wish it would give us a nice long break. But more often, I find myself just staring at it...out of every window I can find...basking in it's beauty. It's thick, it's deep...most of it in the yard is sloped so nicely and untouched except for a bunny track here or there. It shimmers like glitter in the sun. It reminds me of fun times with my brothers when I was little and it reminds me to be thankful for the warm home and good vehicles we have to keep us going in this beautiful, but sometimes monotonous and tricky winter weather.

And so it is with Down syndrome. You're not REALLY sure what to expect. We have a forecast, sort-of, but Down syndrome affects each individual very differently...so we just go as we can, day by day. Sometimes I get frustrated and impatient. And then...SALVATION. Angels like Roxane and our amazing Early Intervention crew of Michelle, Carrie and Sharon. They help us decipher the forecast a bit...help us decide which direction to go next. They help us navigate the thick stuff...and celebrate when the snow lets up a bit...and especially when we reach a huge beautfiul sunshiny day of pure MILESTONE making! They really are the snowplows of Down syndrome. And so are the many, many families who have come before us working on awareness, equality and so many important issues. Many times I stand in awe before them, just staring at their knowledge, their courage and most of all their grace and pure joy they and their families exude.

We are surrounded with warmth and love of supportive family and friends...much like our warm home and vehicles. We're incredibly lucky for this, and thanks to Down syndrome I am even more aware of our fortune.

Day after day, week after week...we get little squalls, big blizzards...bumps in the road to "typical" development. But I know...if we can just do a little at a time...if we can just get to Wachter, so to speak...we'll be good. Sometimes you just need more patience, sometimes more gas...and sometimes a little of both.

And what once may have been unimaginable to me, is so common place. What I see most, is the beauty. Unless you have experienced this first hand...it may sound strange. But there is so much beauty in every single "little" thing in life, and there is absolutely nothing more wonderful than to celebrate those little things through the love of family and friends.

Our little man is so close to reaching a milestone - he wants to stand and walk independently. You can see it in every fiber of his being. And he will do it, probably somewhat soon. And as we stand at the verge of this huge, amazing thing...I say, let it snow. One really must respect it, and see the beauty for him or herself, in all forms.