Thursday, December 27, 2012

Christmas break fun

Ahhh... Christmas break. We SO needed this.

Unending days (or at least a week or two) of no schedules, nowhere to be, nothing we HAVE to do. Just us. Hanging out. Enjoying each other. No rushing around. No gifts to buy. No doctors appointments. Or therapies. Just home.

The last few days I've been able to really truly enjoy my kids. To look into their sweet innocent eyes and see the ways they are growing. To give them the attention they crave and deserve. To just be together.

And I've been able to re-appreciate how hilarious they are...

A few quotes from our week:

Charlie: "Daaadddd..... when are we going to beeeeee there??"
Dad: "We're going to turn up here."
Charlie: "Ooh! Turnips!! I love turnips!"


Nolan: "Mom.. What will the nursing home smell like?"
Me: "Uhhhh... (pondering this odd, yet legit question) What do you think?"
Nolan: "I don't know... Dirty rats?"


Dad: "Charlie, will you pray first?"
Charlie: "Yup. Down, Set, HUUUTTT!"

and then at bedtime..

Charlie: "Watch over Tacky, Abe, down Set HUUUTTTT!"


Nolan: "I wish I could go back to school."
Me: "What?? Why?"
Nolan: "So I could skip rest time for 5 whole days.."


Charlie: " Look! Santa left us the empty wrapping paper rolls!"
Nolan: "Yeah! Cause he knows we like to play swords with them!"


while painting window suncatchers..
Me: "Wow Charlie! You painted your Santa all black!"
Charlie: "Yup."
Nolan: "Maybe he got stuck in the chimney."


and my favorite from today..
Charlie: "Dad!! Listen to this! This is sweet.. Guess what?"
Dad: "What?"
Charlie: "I speaked Spanish today..."
Dad: "Really? What did you say?"
Charlie: "I said 'Cha-cha-cha."

Monday, December 24, 2012

Confessions of a Scrooge

I've never done Christmas cards before.

It's always been one of those things.. You know, the plastering only picture perfect photos of your kids all over Facebook, the Pinterest Perfect blogs highlighting the finest decor for every season, the bragging of your kids skipping ahead a grade, getting 1st in the overall Science Fair, begging for more homework, loving to clean their room, and building handmade recycled wood crafts for homeless orphans...

It just doesn't seem real. People do not look like that all the time. Families are not always smiling. They are not always freshly showered and cleanly clothed and not trying to hurt each other. The weather is not always perfect. The lighting is not always accentuating your highlights and the scenery is not always ideal.

Don't get me wrong.. I'm not a total downer.. I absolutely LOVE receiving Christmas cards from our friends and family. I LOVE checking the mail this time of year and instead of seeing piles of bills, there are a few handaddressed envelopes that I know will make my day. Look at all these people that have never before received a letter in return from me, but think of us every year and send a card anyways..

Thank you! I've just never been able to bring myself to do it before..

But this year is a little different. Maybe it's because I reveal so many bad/embarrassing/REAL secrets of our family on this blog, that I finally feel like I can post a picture of us all clean and smiling and happy looking at the same time (thanks Photoshop!) without feeling like I'm putting on a show.

Although I did seriously consider sending this out..

But I didn't.

Because looking back on the year, of course there were messy times. Of course there were crabby times. Of course there were sick times. Because that's what being a family is about. It's not about having it all together all the time to put on display for the world to see. It's not about organized closets and toothbrush scrubbed floors with Pinterestingly tantalizing meals on the table every night. It's about life. It's about getting down in the trenches, getting dirty and grimy. And getting through it. Together. It's about loving each other. And learning. It's about this crazy journey we're on and the memories we make along the way.

Overall this was a good year. Overall, there were smiles. And laughter. And togetherness. And overall, that's what I want to remember. So..

Merry Christmas from our Family To Yours!

Thursday, December 20, 2012

Is Her Life Worth It?

I know why Ella got Salmonella Poisoning..

and I am (eeee!!!) guest blogging about it on my absolute very favorite blog that I'm creepyily obsessed with and secretly want to be *ahem* like to read every once in awhile.. you know.. when I get time...

So click here to head over to my friend Deanna's to read my blog. Warning-it starts the same as a previous post, but don't worry.. it's different. :)

Is her Life Worth It?

Friday, December 14, 2012


Immediately after I published my pity party post yesterday I decided I needed a breath of fresh air. I put on my shoes and coat and wandered down to our mailbox, hoping to clear my head and draw some kind of strength from nature, enough to make it through the rest of the day at least.

Boy did I get more than I bargained for..

When I looked in our mailbox, I saw a package. It was from a friend who had read my post last week about our trauma with Ella's holey shoe at the doctor's office and decided to bless me with a pair of nearly-new shoes her daughter had outgrown. She happened to have extra room in the box, so included an adorable outfit as well. I was already smiling as I unfolded these items, and then I opened the Christmas card she had sent along with it. There was a generous gift of money included that she wrote was from a Facebook friend of hers who had read the blog and admired the honesty of it.

Wow. Humbled. After a week of worrying about paying for truck repairs, Christmas presents, and other such things, and then complaining about my "hard" life on my blog and Facebook.. I felt awful. I felt so guilty for not appreciating what I have and for being so selfish to think solely of myself, instead of looking outward like this stranger (I think) did.

That random act of kindness carried me through the rest of the night, and honestly my day went much better. Charlie woke up from his nap in a good mood and we enjoyed a lively game of Chutes and Ladders, we giggled at bedtime, and even though I ended up getting the stomach bug my children so graciously shared with me last night, I still felt uplifted and like I could handle this.

If Ella's life has taught me one lesson (it has taught me A LOT, but bear with me..) it would be that people are generous. People are good. People like to help others. When Ella was sick last year we overwhelmingly experienced the good of people and I vowed to "Pass it on" the best I could. I think I've done an ok job.. there have been times I've reached out to others and tried to bless them, but I know there's also been times I've had great ideas, but for some reason or another didn't follow through with them. I heard a quote somewhere something like, "The smallest act of kindness is better than the greatest of intentions." Guilty.

I often talk myself out of something kind I could do because "Well.. I'm not sure if they really like that," or "Maybe they already have something like that," or "I don't really know them that well," or "Can we even afford that?" I really do think about doing so many things, but I am ashamed to admit that not enough make it to fabrication.

And now there's the tragedy in Connecticut.

Reminding us that although there is so much good in the world, there is also so much evil. My heart and prayers go out to all the families affected by this senseless act. As I hug my children a little tighter tonight I will remember those mothers whose arms are empty. As I prepare supper that is likely to be rejected by at least one family member, I will think of those families who cannot be together tonight. As I wrangle little bodies to keep from fighting, and try to maneuver them into bed I will feel thankful that they are here.

So where can we go from here? What kind of difference can we make in this too-often cruel world? I will tell you first hand that even the smallest act of kindness really can uplift you. The most humblest of gifts, even if they're not your "favorite" can carry you through the hardest of times. The smallest acts really are better than the greatest intentions. What can we do today in our lives to make the world a better place?

Thursday, December 13, 2012

What happens if mom makes a cake?

It's been another one of those weeks. It seems like we've had far too many lately.. more than our "fair share." One of those weeks that if there is a cold germ flying around within a 5 mile radius.. all our kids will catch it, even if they haven't gotten over the last one yet. Or if there's a particular, puking GI bug lurking nearby, we'll also be sure to get that too. And some random illness causing a fever at the same time all 3 kids are hacking, puking and whining? Yup.. we'll be sure to catch that too. And if you take a child to urgent care and need to pick up medicine on the way home, the pharmacy is sure to be closed.. One of those weeks where if the husband decides to take a half day of work to go hunting in the 1 inch of snow we have, his tires will be sure to slip on the grass and do about $4000 worth of damage to his truck.. One of those weeks where you decide to print out large sized family pictures to finally! hang on your walls and while trying to flatten them out from being rolled in the tube they came in, your husband absently sits on them and bends the corners all to heck.. One of those weeks where when you actually try to put a dent in the filth you are living in, due to taking care of sick, whiney, clingy children all week, you'll discover the belt to your vacuum needs replaced. One of those weeks where you rush to sew new stockings to hang up for Christmas decor, and after the 4th one you just can't get the fabric to coordinate just right, and have completely run out of motivation, leaving you with "Four Stockings Hung By The Chimney With Care".. in a family of five. One of those weeks where everyone is around-the-clock whiney, crabby, needy, and discouraging and you just don't know what to do to change it around.

I know I've been feeling this way, but I thought I'd been doing a pretty good job of faking a smile and keeping a cheery attitude. Apparently not. It's recently been brought to my attention that my kids are picking up and on the "nothing can go right" mantra. Just today I was looking at a paper Nolan had brought home from school and was just about the throw it in the trash when something made me stop and read the sentences he wrote a little closer. The assignment was to make a prediction about what would happen next. So, for instance under the heading "A snake is under a tent" he wrote, "We will get bit." Makes sense.. and for "Two dogs see a cat," he wrote "They will chase it." Yup.. Clearly accurate statements. But the last one is the one that got me. The statement is "Mom makes a cake." I was hoping to read something along the lines of "We will eat it" or "It tastes yummy" or "We hug and kiss her and tell her she is the best mom in the world and then go to bed early while she enjoys a nice hot bubble bath and daddy cleans the house." Instead this is what I read..

Yes, he wrote, "It will spill." All I can do is shake my head at that one. Sadly.. that is probably much more accurate than any of the very purely fictional statements I came up with.

Things have been rough lately, but somewhere deep down.. very very deep down.. I think I like my kids. I keep having this very-hazy-around-the-edges, distant memory that is quite cloudy and difficult to see through, but it sounds like maybe there is laughter in it? We are enjoying each other's company? We are having fun? And no one is coughing or puking or crying?? I'm not sure because it all seems like a dream in the midst of a nightmare, but I do believe this might have happened at one time in our lives. I found this picture that gives me a clue that this figment of my imagination might actually hold some truth, but I'm not sure..

Who are these nice, genuinely happy-looking, smiling people??

I know I have a lot to be thankful for. I know it could be worse. I know it may sound like I'm unnecessarily complaining.. because I am. Please, just allow me this moment..

This week (and last.. and the one before that.. and the one before that...) reminds me of my friend Deanna's fabulous post from a few months ago. I wish I could come up with my own great analogy, but since I can't I'll just retell hers.. She must have been having "One of those weeks," and compared it to an evergreen tree lit with Christmas lights. The lights are bright and twinkling and beautiful to look at, but think about what's holding them up.. Hard, pokey branches that hurt when you touch them. Branches that, if you try to walk through them, will scratch you and scrape you and hurt until you bleed. But what if you didn't have those branches? What if they weren't there to hold those beautiful lights up? The lights would be laying in a clump on the ground, not beautiful or admirable to look at by anyone passing by.

The bright twinkling lights in our life are the good days. The days highlighted by joy and outlined in laughter. The days everything just seems right in the world. The pokey evergreen branches? They are the hard days. The "one of those weeks" days. They serve to make us stronger and hold us up in the good days, so in the end we're not crumpled in a tangled heap on the floor, but instead shining brightly, weaving effortlessly in and out of those branches, twined together in a beautiful display of love and strength.

It's a wonderful analogy and boy, I hope its true.
If so, we are going to have one heck of a big, full, branchy, poky, scratchy tree..
Let's just hope we get a few lights soon to make it shine. :)

Monday, December 10, 2012

PROOF! I am not a liar

The last few weeks of Ella's therapy appointments have been a bit disrupted by meetings, doctor appointments, and such terribly tragic things such as someone trying to (gasp!) touch her. And what a shame since Ella has such an exciting thing to share as finally taking steps! So today when we had every single one of our therapists present (6 in all..), ready to witness her amazing feat, do you think she seized this golden opportunity to show off her skills? Impressed them all, knocking their socks off, and completely making their day week? Of course not.. she was sick, not feeling herself, terribly clingy.. making a complete liar out of me..

So just so no one goes about spreading rumors about the crazy lady imagining her child is walking, I have PROOF!

Alas! A video of Ella taking some steps. It only took me an hour or so to find the right video to upload (Don't worry.. I had nothing else to do. HA!) and keep in mind this isn't her best work because the too-cute-they-shouldn't-be-legal boots she's wearing are a little hard to walk in, (she's learning early that you pay a price for fashion) but it's all we've got.

So there! I am NOT a crazy lady.. Too much.

Thursday, December 6, 2012

The Best Kind of Prayer..

comes from a child. Not only are they faith-filled, innocent, and totally honest, they also can be completely random.

Charlie's prayer from the other night..

"Dear God, watch over... umm.. thank you for.. mom, dad, Ella.. mom, Charlie.. dad, Nolan.. playing at Nana and Papa's, playing outside. Thank you for getting to play with the kitties.. Watch over mom, dad, Nolan.. dad.. mom, Charlie, Ella.. Nolan, dad..."

insert Nolan: "What is he talking about??"

me: "Shhh..."

"Mom, dad, Charlie, Ella.. mom.. Nolan, dad, Ella.. Charlie, mom, dad. Amen. Goo goo."

Monday, December 3, 2012

Do you hear what I hear?

Well.. we don't know yet.

Ella's follow-up ENT appointment was today and I pretty much had a blog post all written in my head to the tune of the Christmas song "Do You See What I See?" (in case you didn't get that from the title..) about how she passed her hearing test with flying colors and the tubes are working beautifully and we were all but released from ever seeing the ENT specialists again.. I guess this is what you get when you count your metaphorical chickens before they hatch, even if only in your head.

I should have know things were not going to go my way today from the very start.

I should have known when my too-kind-to-say-anything mother-in-law stopped by to pick Nolan up for school to save me an extra half hour of driving time and saw my horrifically embarrassingly messy house.

I should have known when I stepped foot out the front door and saw that our dog had broken into our porch and strewn a bag of trash all over the lawn (meaning I had a horrifically embarrassingly messy house inside and out).

I should have known when I sat down in my car and saw a fuel tank pointing to Empty.

And I really should have known when my driving-to-Sioux Falls-by-myself ritualistic listening to the soundtrack from "Wicked" was tainted by a non-working iPod. I've truly begun to treasure that time where I am not outvoted by pleas of listening to "Big Green Tractor," "Made in America," or Sesame Street Music and I'm free to belt out at the top of my lungs (completely out of tune of course) "Defying Gravity!"

But I ignored all these somewhat-subtle signs and charged ahead to the appointment, high expectations in tact.

I arrived in desperate discomfort due to still after SO many of these trips, not learning my lesson that a 16-oz thermos of coffee goes through my system in exactly 1 hour and 8 minutes and our drive takes 1 hour and 30 minutes, leaving the final 22 minutes completely agonizing. Due to Ella typically being asleep at this time coupled with the knowledge that she will scream the rest of the way if awoken, this leaves my options very limited.

I am forced to choose between pulling off into a secluded cornfield somewhere (hard to do now that harvest is over) OR finding a small town gas station and leaving Ella locked in the car to run in and out at warp speed before she wakes up (or somebody steals her) Both of which are obviously terrible ideas and of course I have done neither.. Of course..........

OR I can wait it out. And since I'm normally NOT early/on time I usually have to just wait it out. If I could only remember to wait to start drinking my coffee until 22 minutes into the trip I think I could time it about perfect..

But anyways.. first thing at the appointment was the OAE hearing test. Or what should have been. The lady hooked up the monitor and realized she couldn't even get a reading. At first she said maybe the tubes weren't even in..? Great. But upon further inspection she saw that they were, in fact, in but maybe were crusted over.. "You didn't throw away those ear drops she got after surgery, did you?"

Of course not.....

She decided not to do the OAE until Ella had seen the doctor because she wanted him to look first, knowing that she wouldn't pass if they were obstructed. So we were sent back to the waiting room to wait. When we were called back to the doctor, the first thing they do is take your weight. (Not my weight, thank goodness...) The nurse was busy getting the scale all ready for Ella. The scale that you stand on. Unassisted. I said to her, "Ummm... she's not gonna stand on there. She can't yet." The nurse looked surprised and said, "Oh! Okay.. Well we can do it.. on this other scale... I guess.. I thought she was old enough." Ouch. I know she didn't mean any ill will with that comment, but it still stung a little. Yes, she is old enough. That doesn't mean she can. Or will.

To add insult to injury Ella's weight was even lower than last time and seems to continue to drop slowly which I know GI is not going to be happy about. And we weighed her clothes on, which again GI is not going to be happy about, but they're just going to have to deal with it.

While waiting for the doctor I was trying to keep Ella occupied and casually looked down at her feet and pointed to the hole in her shoe and said, "Ella! You have a hole in your shoe." Big mistake. HUGE. She freaked out and wouldn't stop grabbing at her shoe and I couldn't distract her enough. Apparently she was appalled that her mother would bring her on an outing with holey shoes. I'm sorry. One pair is borderline too small, one pair is missing its mate, her boots are hard to walk in, and I haven't had time to buy new ones yet... Don't worry Ella. I threw the favorite-fits-just-right pair of shoes with the hole in the toe away the minute we got home so that will never happen again..

So THEN when the doctor came in there was some confusion about why they didn't do the OAE since that was basically the only reason we were there in the first place-to see if she could pass it with the tubes-so he sent me back to the waiting room again. To wait. But not before he AND the nurse reminded me on two separate occasions of those all-important ear drops nobody told me were important that I could use whenever I thought I should.. Seriously! What is in those ear drops?? The healing water of Lourdes or what? And why didn't anyone tell me about it the day we got them???

By this time we had been there for an hour with little to no answers. And as if that weren't enough, while we were waiting in the kids area there was a little girl about Ella's age who was mocking me with all the things she could do. She seemed to be walking and running and talking and coloring all in the name of taunting me that Ella can't do those things... Okay.. maybe I'm exaggerating a little. But it's amazing how on a good day when everything is going well it doesn't bother me at all the see other kids Ella's age doing things she can't do, but on a day where a few things are starting to quickly add up, your emotional senses are heightened to polar extremes.

I guess I can't speak for everybody.
Maybe not everyone is like that.
Maybe they have tougher skin than me.
Maybe I'll get there.

After that agonizing, frustrating tear-filled-eyes wait the audiologist finally called us back again to do the test. Which took about 3 minutes. Hindsight=20/20. We should have just done the OAE the first time... But anyways.. she didn't pass. Which could either mean she does have some hearing loss or her ear canals are too tiny still to get a good reading or the respiratory gunk she has going on right now is interfering. Same old story. So again.. we were sent back to the waiting room. To wait to see the doctor. Again. And we waited (with that same little girl, lest I could catch a break) and waited and waited. After so much waiting I Ella got a little cranky so we started to walk around the waiting room. The receptionist noticed us and asked who we were waiting to see. I told her the doctor, again. She smiled and nodded, then I heard her call back to the nurses station and ask about us and soon a nurse came out saying that, after all that time waiting for him, the doctor wasn't going to see us again today and actually guess what? He had already left. Apparently he had some place to be (I don't know, but I can pretty much guarantee it wasn't a 1 1/2 hour car trip home to pick up his other child before Papa had to go to work during which he was also hoping to stop to get supplies for Christmas presents, groceries, pictures, and the library where he accidentally dropped off a book that actually belonged to a different library....) All the nurse could tell me about Ella failing the test was that "I'll probably be getting a call.." A what should have been 20-minute appointment with answers turned into an almost 2 hour appointment with no answers. Beyond frustrating.

Don't worry. I held it together until I got to the car. Okay.. the parking lot. Fine... it was the elevator.

During my drive across town I realized I was left with no time for lunch and very limited time for the fabric store (Yes I was choosing the fabric store over lunch). So I quickly ran in, upon realizing I FORGOT my SIXTY PERCENT OFF coupon, with a grumpy Ella hoping to find exactly what I was looking for in less than 10 minutes. Didn't happen. So back to the car. On the way out of town I realized that maybe in fact I did have a few minutes to swing through the drive thru of McDonalds. I don't even like McDonalds so why did I choose there out of all the enticing options along 41st Street? Two words. Popcorn. Chicken. McDonalds has the most amazing popcorn chicken bites. Or should I say had... McDonalds had the most amazing popcorn chicken bites. They don't have them anymore. Of course. But after investing so much time waiting in their mile long drive-thru line I felt like I needed to make it worth it and order from there. The day held a slight glimmer of hopeful redemption when I found an old McDonalds gift card in my wallet from when Ella was hospitalized last year (We don't eat out much..). Until I found out it had $0.37 on it.. Ugh.

But I smiled. And moved on. And left at the very last possible minute I could have to make it home in time. And while eating my sandwich and holding the wrapper on the outside I suddenly looked down and realized there was a bite taken out of my wrapper. Yep, I'm awesome. Does the fact that I couldn't tell the difference between eating my sandwich and eating the wrapper hold any indication of why I don't like McDonalds in the first place??

The rest of the journey was fairly uneventful except for the truck driver who honked at me as I passed him on the Interstaet and waved for a full 10-seconds who I have no clue who you are. Among the things that went through my head during those few seconds were "Do I have a flat tire? Is my door open? Is my trunk open? Is something hanging out my door? OMG did I leave Ella on top of the car??? As if she would still be there after 40 miles of traveling at 75 mph (I checked though.. just in case.)

So now we're home again. And after Ella screaming for 1/2 hour and coughing up mucus all over me, we are no worse for the wear. Or maybe just slightly worse.. At least we fared better than that iPod.. It may have gotten thrown against the dash on the way home. No, it didn't make it work. But in case you're wondering? Yes, it did in fact make me feel better.. Much better.

Wednesday, November 28, 2012

Product Review: By Ella

I feel the need to first apologize for my mother's apparent drop off of the bloggy world.. I don't quite understand the circumstances myself, but I have heard many mutterings about Christmas cards, Christmas shopping, crafts, baking, decorating, and especially the oodles of presents this woman is planning on hand-making. I don't know why she is so busy, especially since it is still November, but I suspect it has less to do with this queen of procrastination's preparedness and more likely to do with the yards and yards of new fabric stuffed in the closet that will someday supposedly be curtains, that she is dying to get a start on but can't start sewing until her Christmas presents are all done... SO lest everyone moves on and easily fills the void left by this teensie little blog, I will step up to the plate and fill in for her.

I know my mom would love to see me walking on my own and she feels like she has been waiting forever,  but just between you and me.. there IS a reason I'm not yet. And it has nothing to do with low muscle tone, fluid in my middle ear canal, or hesitation on my part to try something new (aka: extreme anxiety, according to you-know-who). Are you ready to hear what the real reason is? Okay. Shhhh... The real reason why, at almost 23 months old, that I am still not walking unassisted is.... I have been spending my time secretly conducting exclusive research for the "Assisted Walking Devices Company."

Yup. Believe it.

For many many months now I have been test-walking every kind of make and model of walker available in today's market. This includes, but is not limited to, the pink V-Tech walker, the hippo, the large red tube, a lion walker, doll carriages, doll strollers (yes, there IS a difference), tool benches that aren't really walkers but are still fun to push around, Leap Frog standing toy which, again, isn't technically a walker but sure can move when you put a little oomph behind it, dining room chairs, small toy room chairs, and of course the "actual" therapy walker.

Recently I received word that the M&M funding for my research may experiencing some cutbacks and while the official documents and reviews won't be available to the general public for a few months, I wanted to give you, my loyal readers, a sneak peak of my very favorite, must have walker for the upcoming year. Are you ready for this???

Drumroll please...........................

Here it/she is! I call it the My Oh My Walker (MOM for short..)

This walker has the smoothest corner-turning of any I've tested, stops and goes on a whim (or a whine), responds quickly to grunts and hand motions, and best of all it/she is always accessible. There are never any batteries to change and it/she sings and dances with repeated use (though that could also be considered a downfall if you've ever heard/seen it/her..). It/she even clears clutter out of the way as I'm walking (not that we ever have any of that is this house... ha!) It/she is very adjustable and transitions from walking with 2 or 1 hand with ease. There is a built in "hand"y (hee hee) carrier that becomes available when walking with only 1 hand that can be used to carry all your baby dolls, race cars, tools, magnets.. Whatever really. Its capacities seem to be endless. You do have to keep a close watch on this particular model though as I've caught it/her a few times trying to set some of my treasures down when it/she thought I wasn't watching. 

The only downfall? I've noticed her cheerfulness does start to decline after about the third consecutive hour of walking back and forth around the house, but that is something I'm currently addressing with management. We're committed to getting all the kinks worked out because how something/someone could NOT be cheerful while assisting me in the very important task of learning to walk eludes me... I continue to push it/her to the limits. After all, perseverance only makes us stronger, right?

I'm sad that my research is coming to an end, but I hope you find it beneficial for meeting your walker needs. 

Ummm... Does this mean I have to start walking on my own soon?

Wednesday, November 21, 2012

Giving Thanks

Well, tomorrow's Thanksgiving. And while I am thankful for many MANY things, this isn't a post about what I'm thankful for, per se. I've been having some mixed emotions about being thankful and I'm going to attempt to sort them out here. So read on if you dare!

This is the time of year where "thankfulness" surrounds us. Our children come home from school with cute turkey cutouts labeled with all the things they're thankful for.. "monster trucks, cars, football, dad and mom," in no particular order I'm hoping..  ( - : We hear sermons and prayers on being thankful. We gather and celebrate with friends and family. And we see daily Facebook status updates on reasons people are thankful. Now.. this is in NO WAY a bash on people who do this. Because actually? I have a lot of good friends who do this. And I really like to read them. Some are heartfelt, tearjerker sincere thanks and some are silly, quirky things that make me smile. I love the idea of being intentional about taking daily, sometimes mundane things, and choosing to be thankful for them instead of getting lost in the hubbub of daily life. I think that's really important. But personally, I just can't bring myself to do it. Why? Of course I'll tell you..

Because I can't help but be reminded of this time just one year ago when I was having trouble thinking of anything I was thankful for. It was at this time last year that thankful posts about "having healthy children" would send me into a fit of tears and "new, perfect babies" being born was enough to send me to curl up under a blanket for the rest of the day. I know it seems like nowadays you can't say anything without offending anyone and I'm really not a part of the political correctness bandwagon so I hate to add another thing to the list of "should not say in public" terms. But I do know how I felt last year. And I do know there are many other moms feeling the same way this year. Maybe they've recently received a diagnosis of a disease or syndrome in their child. Maybe it's their first Thanksgiving with a special child. Maybe it's their 20th but it just doesn't get much easier with time. Maybe they're struggling with infertility. And as if it weren't already hard enough to not believe everyone else's lives are more perfect and "easier" than our own on a daily basis, these moms are suddenly bombarded with yet another image of why everyone else has more reasons to be thankful than they do.

I know I felt that way. Could I be overreacting? Too sensitive? Yes and yes. But when I would see people being thankful for their healthy children I honestly felt like there was a silent, "thankful my kids are healthy, unlike yours..." behind it. I know I can be accused to taking things too much to heart, but I really think sometimes we, myself included, are thankful for things because we see others without it. Does that make sense? When we see a picture of a child in a 3rd world country on the verge of starvation, we say an extra thanks for the bounty of food we have on our table. When we hear a news story about a young child physically or sexually abused by an unfit parent, we hold our own children just a little tighter that night. Is there anything wrong with this? I'm not sure.. I think it's good to be humbled and reminded of the many luxuries we have in life. But I don't want people to look at my life and say, "I'm so thankful for my healthy kids because some people don't have that. Like Maria... I'm thankful I'm not her."

If there's one most important thing I've learned on this journey with Ella it's that blessings really do come in disguise. It's wonderful to take a day (or month) to be purposely thankful for everyday things we might often take for granted--warm homes, food to eat, clothes to wear, jobs to provide. But truly for us, our biggest blessings haven't come from the easy times, when everything was handed to us. Our biggest blessings have come through our most intense struggles.

Need proof?

I know it's human nature to want things easy. We don't like to struggle. We don't like to do hard things.. Why? Well.. they're hard. But I can attest that through even the most turbulent of storms, the clouds do part and a rainbow will emerge. There is hope. There are many wonderful and miraculous things to come, not in spite of, but because of your hard times. No matter what you're going through, it will be okay. The storm will pass. So this year go ahead and be thankful for the things that are going well for you right now--a big promotion, a new home, even a healthy baby.. Just don't feel feel thankful because someone else doesn't have it. And also maybe take a minute to be thankful for the things that aren't going so well right now-a lost job, a rough relationship, a scary diagnosis. Because that is the area you are growing the most and from where the biggest blessings may surprisingly come from.

This year I am thankful for our family, home, food.. yes. But mostly I am thankful for our struggles. For the times we have been put to the test, thrown in the fire, all our impurities painfully burned off, only to emerge as the finest, most pure gold.

Ooookaaaayyyyy.. so maybe we're not the finest, most pure gold but perhaps we're microscopically closer? I hope so.

Happy Thanksgiving!!

Wednesday, November 14, 2012


Ella just took her first steps!

Ella just took her first steps!!

Did you hear me??? 

Ella just took her first steps! 

If this blog would let my font go any bigger than this you can bet it would take up the entire stinkin' screen.


Oh my goodness... Okay.. Breathe.. Breathe... Whoa.. Back up...

What was I originally going to blog about before this big fantastic out of this world crazy thing just happened? Oh yeah.. Tubes. So as you know Ella had surgery yesterday to place ear tubes and examine her airway. (Thank you again for everyone's thoughts and prayers and kind messages!) Everything went GREAT! Of course I was a bundle of nerves going in.. nervous about how the surgery would go, if it would help anything, how Ella would wake up from anesthesia... I was especially nervous that they wouldn't let me be with her as they put her to sleep (because the other hospital I had originally scheduled her surgery with told me I couldn't) and with her severe stranger anxiety coupled with swallowing air/gassy tummy AND gas to put her to sleep--- that was NOT going to be a pretty sight. So the entire 1 1/2 hour drive (at 4:30 in the morning need I remind you..) I was pumping myself up to be firm with them that I would insist to be with her. I had a whole speech ready to go.. I was going to battle for her. Because I am her mother. And I know best. And they would need to listen to me. I went in ready for a fight. (Those of you who know me might think this a bit comical since I am not a confrontational person... I'm sure it was.) Upon arriving at the hospital, I was waiting for the precise opportunity to bring it up and when the anesthesiologist asked if I had any questions I pounced! I started very firmly with, "Umm.. I know it isn't standard procedure.. since it's a sterile environment and all..  but I'd really like to be in the operating room.. if at all possible.. when you put Ella to sleep.. because...." and while I was muttering rambling stating my case with conviction the nice man was already getting me a jumpsuit and accessories to wear in the OR. Wow.. I must have been pretty intimidating. 

So anyways.. here we are hanging out waiting for the surgeon. 

Soon after they took us up to the OR where I got to hold Ella while they gassed her to sleep. (Seriously.. SO thankful for that!) and not too long afterwards it was all over! She was all snuggled in with the nurse who was with her when she woke up in the OR. Until she saw me. Then she started to scream, clutch at my neck, and passed back out asleep. :) The doctor said everything went great. He was able to get the tubes in and there was a little bit of fluid. He also cleaned out A LOT of wax. And everything looked fine with her airway. Which is good. I think.. Except that we still don't know why she makes that wheezy sound when she breaths in deep. And I'm not sure if we should check further into it or not.. But we got some pretty cool pictures of Ella's voice box. I mean.. really... how many people get to have pictures of their voice box in the family album? 

After that, Ella ate some applesauce and drank some water and we were on our way home! Well... after a small detour to a fabric store. Then we were on our way home. And I have to mention.. while we were at the fabric store for an hour Ella was babbling and singing the whole time. She was making these high pitched sounds I've never heard her make before and I'm let to believe that maybe.. just maybe.. she was hearing differently.. even better!

Enjoying some much needed, well deserved chocolate at Nana's house post surgery.

And at supper last night Ella was in SUCH a good mood. I don't know if she was just delightfully happy to be home with no one poking and prodding at her, or if the world of hearing was finally opened to her all the way? She was laughing and squealing and giggling a giggle neither JJ nor I had ever heard before. 

Now here's where the REALLY exciting part comes in.. Just the day before (Monday) at therapy Ella was still insisting that I hold onto both her hands while she walked. I remember specifically talking about it, that she could do it with holding only one hand, but she felt much more secure with 2 and was obviously less wobbly and prone to falling. Well last night all of a sudden she only wanted to hold one hand. And it was that way all day today. I don't know if it was the tubes or not, but something changed. When I tried to hold both her hands she would push one away because she wanted to only hold one. That is definitely drastically different from just two days ago where she would stand there and whine and grunt and wave her hand at me, refusing to take a step until I held them both. 

So while I was making supper tonight, JJ was playing with Ella in the living room and he was trying to get her to stand by herself. We've done this occasionally, but she's never liked it, nor stood for any amount of time, really. Well tonight she was actually standing for a couple of seconds before she would fall against JJ's chest, laughing and giggling and wanting to do it again. Then I came in the room to watch and JJ turned her around and she walked a step to me!!! 

And then she did it again. And she walked THREE STEPS!!!

It was completely amazing and I'm not totally sure with the boys if I would have even really called it their first steps since it ended in face planting it into our chests, but Ella is different than the boys and by golly, I am declaring tonight the most celebrated holiday of the first time Ella took a step. (or three!)

I am fairly certain we are still a ways off from actual walking, but all of a sudden something that I've refused to allow myself to even dream about it on the verge on happening. All of a sudden this seemingly unattainable goal is actually within our grasp. All of a sudden my baby is growing into a toddler.

All of a sudden.. we need to get some darn locks on our cupboard doors!

Monday, November 12, 2012

Tubes and Prayers

Tomorrow we are doing the inevitable.. something I've put off doing since.. well.. Ella's birth I guess. We are getting tubes placed in her ears. I know it's a pretty "easy" and "routine" surgery, but easy and routine are two words that don't seem to exist in Ella's vocabulary. Ella has the teensy tiniest ear canals, making it extremely hard, even with the most advanced microscopes, for anyone to see what exactly is going on in there. But since she has never technically passed a hearing test there is reason for our doctors and audiologists to believe there could be a fluid blockage in her middle ear which I've heard it explained, could make hearing sound like she's underwater.

That could explain why she doesn't say certain sounds like 'ba' or 'da'. Or it might not. If there is fluid in her ears that could be throwing off her balance, which could also explain why she's not walking yet. Or it might not. Us waiting so long to do this procedure might have given her ear canals time to grow, making it easier for the doctor to get the tubes in. Or it might not have.

See why I'm having a bit of a hard time with this surgery? There's so many unknowns. It might help her hearing. Or it might not. It might help her speech. Or it might not. It might help her balance. Or it might not. They might be able to get the tubes in. Or they might not.

It isn't a required surgery. It's optional. It isn't medically necessary. We aren't in an emergency situation where we have to make a split second decision about what we think is right right now. No, I have had months and months to agonize over this. I actually canceled the first surgery I had scheduled at a different hospital back in August because I just didn't feel good about it. Or maybe I didn't like driving in that city.. But something our ENT said at our last appointment helped me make the decision to do it now.

He said that no, it isn't necessary right now. And if we wanted to wait 6 or so months to schedule it to allow her ear canals to get a little bigger, we could. It probably won't make much of a difference. But, he said, if we want to give her the best shot at hearing 100%, if we want to give her the best chance at a larger vocabulary, if we want to give her the best balance we can, then we should do it now.

And that's exactly what we want to give our Ella girl. The best chance. We want to do everything we can to give her the best shot at life. To be the best she can be. So tomorrow I will be leaving my house in the dark, quiet freezing cold hours of 4:30 in the morning to do just that. Give my baby the best chance of walking, talking, hearing... the best shot at life

So of course we would appreciate any and all prayers for Ella. That if they need to get an IV in they'll be able to without too much trouble with her tiny veins. That the doctor will be able to get the tubes in her ears. That if there is any problem with her airway they'll be able to find it (Oh yeah.. they're also examining her airway while she's under since she makes a kindof wheezy sound every time she takes a deep breath.) That she comes out of the anesthesia well. That we have safe travels. That a certain someone who has a tendency to shut the alarm off when it goes off before 7 8 will be able to wake up on time. That there is enough coffee in the world to sustain me there and back. That the surgery will be a huge success and Ella will start hearing better. And talking. In full sentences. And walking. Running. Climbing up stairs and jumping through hoops. By next week.....

Too much? Ok.. just prayers that surgery goes well will do so we can get back to enjoying life with this girl. 

Wednesday, November 7, 2012

Civic Duty: Ella Style

Well the election's finally over and along with it the host of negative TV ads, annoying phone calls, mail box full of flyers, and Facebook political rants are (hopefully) dying down.. Whether you're happy or sad about last night's election results something a friend posted on Facebook last night puts things in perspective..

"No matter the winner tonight we all have a chance to make the country a better place! Hold a door open for a stranger, teach your children kindness, volunteer, help those in need, compliment instead of judge, smile, and love those around you!! :)" Thanks Jess!

We really took that to heart around here. So even though Ella was far too young to vote in last night's election she was not to be left out.. I'm happy to say that she was creatively able to perform her civic duty today in her own unique and special way. Believe it or not, while we were waiting for 2 hours to get our oil changed this morning she singlehandedly guaranteed the job security of the two kindly custodians working there. How you ask? Well, while waiting for two hours and performing a modern day loaves and fishes miracle with 5 chocolate teddy grahams, 3 mini regular teddy grahams and Charlie's half-eaten Halloween monster cookie she toddled my aching back around for TWO HOURS, spreading her cookie crumb love all over their pristine showroom floor, fingerprinting their shiny new cars, and grubbily smudging her way along their entire wall of windows. All the while charming all the customers in the waiting area, the salesmen, receptionists, mechanics, and EVEN the custodians who were working tirelessly to keep things clean in the wake of the tornado that was Ella..

Did I mention we were there for TWO HOURS???

Oh, I suppose some may have interpreted the custodians glances our way as slightly irritated..
annoyed.. even a little exasperated? BUT, ever the optimist, I am convinced I saw understanding and appreciation shining in those weary eyes. Appreciation that their jobs were, in fact, necessary and much needed, even in this economy. With every swipe of their dust cloth, each push of their broom, and swish of their mop, they were guaranteed a spot in this workplace. Because of people like Ella. 

Your welcome.

So there you have it. Ella's civic duty. Just goes to prove you're never too small to help your country.

Raise your hand if you want a shiny red camaro!
pweese Daddy...

Monday, November 5, 2012


My amazing technologically gifted sister-in-law came home last weekend and was kind enough to come over to investigate the mystery of WHY in the WORLD I haven't been able to upload my movies from the camcorder onto my computer for the past 3 years..

She performed a series of exceptionally advanced degree, very involved, highly skilled maneuvers that included...

plugging the power cord into the wall...

Wow. Just wow. Who knew?
"Oh I am so embarrassed..."

The only bad thing now is that I can't get my iMovie to work so I have no program to actually play these videos on my computer.. therefore no way of knowing which is which (they come up in randomly marked folders on my Desktop.. with up to 3 different file versions of each one. I obviously have no idea why). So to upload them to YouTube I get to try to figure out which is which by guessing which random number code might be the one I want, waste oodles of my precious time uploading multiple wrong ones until finally, with only some amount of luck, stumbling upon the one I wanted.. It's really fun.

But let's not focus on my incapabilities too much more, shall we?

Onto Ella's capabilities. Walkering!! No.. not walking, as in all by herself.. You can bet the entire world will hear me shouting about that! But walking with assistance. It wasn't that long ago that I expressed concern to our PT that Ella cruised sideways around furniture so much she didn't know how to walk forwards.. But lately? It's all that girl wants to do! So since our house was not designed with long Olympic stretches of straight, smooth walkways I now spend my days following her and her walker around, helping her turn every corner, push over every doorway and rug bump, and making sure her walker doesn't fly out beneath her. Either that or holding the tips of her hands and walking all over with a hunched over back. For hours and hours and hours on end. I'm beginning to think God knows just how much a complete terror Ella is going to be when she actually does walk on her own and this is just His humorous way of preparing me for that by making me SO inconceivably sick of this stage I will have to be thankful for whatever is next..

So here it is folks.. A slightly (but just slightly.. don't get too excited) higher quality video of Ella walkering. Please excuse the bad taping job (did I not warn you that I had to help her around every corner and over every bump?), dirty floors, laundry piles heap, and annoying video-voice (unless that's what my normal voice sounds like.. in that case my apologies to everyone I've ever talked to..)

Wednesday, October 31, 2012

A "Super" Halloween

So I may be slightly anti-buying-your-children-adorable-yet-oh-so-expensive-Halloween-costumes-they'll-only-wear-once-for-just-a-few-short-hours.. I think it's a little ridiculous. I think it's a total waste of money. I think Halloween should be about being creative and using what you have.

Ooooorrrr maybe I'm just a little envious that we don't have it in our budget to spend that kind of money on making our children look super fabulous for those few hours... Either way. We don't do many store bought Halloween costumes around here unless that store is Goodwill. But let's face it... homemade costumes are WAYYYY better than even Goodwill, right??


That's why I decided to make my kids these super adorable superhero costumes from old t-shirts this year! Creative, inexpensive AND using what we have. Score!

*Shout out to Daddy and Uncle Tom for their old shirt donations!!

I used tutorials from here, here and here.

And they went off completely without a hitch!

I mean.. if you don't look at the skipped and knotted up stitches on the back of the capes because when they say 'don't sew over the non-sew interfacing' they really mean "DON'T SEW OVER THE NON-SEW INTERFACING"... or if you look past the bias tape seam that I put right smack in the middle of the masks instead of on the edge like a smarter person would have done.. or if you don't notice the shorter patch of carpet that is now our living room floor, suspiciously in the shape of a batman logo.. (hey-my husband ALMOST didn't notice me trimming the carpet he was so absorbed in the Sunday Night Football game.. so close!) or if you dismiss the fact that I spent so much time thinking about sewing the capes and masks and power cuffs I didn't even consider what they would wear UNDER those capes until.. oh... last night and the costumes are pretty unimpressive from the front which is where most people saw them from.. (in my defense I assumed a Nebraska October might include snow and winter coats.. NOT a balmy 65 degrees...)

And of course if you don't count the glaringly obvious reality that spiderman doesn't even wear a cape..

I think they turned out ok. ( - :

Oye... Maybe I should start saving now for some nice store-bought costumes next year...

Happy Halloween anyways!!

Monday, October 29, 2012

Change in my Heart

I know I've blogged here before about how Ella has changed my life. I know I've written about how my mind and heart have been opened to people and things that are "different." I know I've talked about the blessing her life has been to us.

But I didn't really realize how much she had changed me until last week.

On Friday Charlie had a day off, so I took him (and Ella) to the Library Story Time we've been going to for the past 3 years, but have been unable to for the past few months because of preschool. Since we hadn't been there in so long I didn't really know any of the other moms, but there was one little boy that was familiar. He was about 8 or 9 years old. And he had Down syndrome.

As I moved toward the bench to sit next to him I found myself staring into his almond shaped eyes and I felt something different inside me. It was subtle. It was unrecognizable to those around me. But I felt it. Where once I might have seen a disabled child, I suddenly saw a life full of hope and potential. Where before I would have felt pity for him and his family for their "hardship," I now felt joy for their blessing. Where once I used to wonder why his babysitter brought him to story time when it sometimes looked like a hassle to try to control his actions, I felt pride at seeing all the things he could do and the way he tried so hard to "fit in."

I wasn't intentionally trying to be more accepting or loving that day. I didn't force myself think any of those thoughts. Down syndrome was the furthest thing from my mind. (Wearing the kids out so they would take good naps was probably taking over at that point..) It was a heart-changing, life-altering moment when I sat down next to him and instead of smiling politely and diving back into my own self-absorbed life, I took a minute to really study that boy. I looked deep into his eyes and a beaming genuine smile came from the bottom of my heart. And you know what? He let out a slight sigh of relief and the little smile he gave back to me was the most beautiful I've ever seen.

It's a good thing I didn't really know any of the other moms there because as I sat there looking like a fool, listening to "Hallo-weiner" with tears rolling down my cheeks, I realized that for the first time I was looking at this person, this beautiful child who just happens to have an extra chromosome, in a whole new light. For the first time I saw the beautiful, unique person who was fighting through the shackles of the world's view of the world 'disability.' For the first time I saw him for who he really was as a person, not as a diagnosis.

I knew Ella had changed the way I think about her. I knew she had changed the way I love my own children. I knew she had changed my own little world. But I didn't realize the extent of how she has changed the way I see the entire bigger world around me.

I don't think I ever mindfully was aware of how I was reacting to this little boy in the past. It wasn't that I was consciously shooing my children away from him so they couldn't interact with him. It wasn't that I willfully didn't want to help him. It wasn't that I ever said outloud that me or my family was better than him. But it was more of a silent attitude I had in my mind and heart. One I wasn't even aware of. I just didn't know.. I hadn't been around a lot of people with Down syndrome. Hadn't purposefully put forth the effort to put myself in that situation. Hadn't educated myself about the truths of Down syndrome. And for that I am ashamed.

The month of October is National Down syndrome Awareness Month and my friend Deanna had been blogging about it every day. I didn't feel the need to post much about it here because.. well... Ella doesn't have Down Syndrome. And it's about all I can do sometimes to focus on CdLS. But today I want to take the time to bring a little awareness to people with Down Syndrome as well.

Did you know that following a prenatal diagnosis of Down Syndrome, over 90% of people decide to abort their baby? OVER NINETY PERCENT!!!! Oh how my heart hurts to think of that...

Going through a similar situation I KNOW how hard it is.  I KNOW how scary it is. I KNOW how the uncertainty of the future scares the living daylights out of you. I KNOW you want to run and hide and you might think this is the worst thing that could possibly ever happen to you.

But do you know what I also know?

I know the joy these children bring into your life. I know the way they change you for the better. I know it's not the end of the world. It may feel like it, but I promise you it's not. It's merely the beginning of a whole new existence you never dreamed was there.

In honor of my friend Deanna's blog and her gorgeous daughter Addison.. In honor of everyone who has Down syndrome or knows someone who does.. Please PLEASE take a minute to educate yourself. To get to know someone affected. You won't regret it.

Deanna and Addison for helping make me aware and sharing your joy in my life.

Thursday, October 25, 2012

Ode to the Paci

To My Beloved Paci:

You're the only one who's been there for me since Day 1. 

(Besides my mom and dad.. and brothers. and you know.. Grandmas and Grandpas.. aunts and uncles.. cousins.. friends.. neighbors.... and everyone else I know..) 

But besides all them.. You're the only one who's truly been there for me.

Even if you weren't always in my mouth, I knew you'd be close by

Only a slight whimper and a helping hand away..

ready when I needed you

Or when mom needed you because was tired of hauling around those rolls..
(I have no idea what she was talking about because she was NOT making breakfast)

You saved me many-a-tummy ache because this is what I would do without you

when mommy tried to get a picture of me in my very first leg warmers (or any other time for that matter)

You became especially important when I was very very sick and needed to relearn how to suck on a bottle.
(Happy Halloween a year late since no one but my nurses got to see me rockin' my costume over those awesome hospital scrubs..)

You loved me when I had my feeding tube in

and you really stuck by my side when I was supposed to be eating but refused to
for months and months on end because.. well.. I just wasn't ready.
(And I kindof wanted to see if mom would really pull all her hair out.)
I don't know if I ever told you thanks for that...

You've been there for all the special occasions..

My first smile

My first Christmas

My first Birthday

And my first day without my NG tube. Woot woot!!

You've always encouraged my diva fashionista skills,

yet you were real... you never minded where we napped.

Maybe most importantly.. you've made life with my brothers..

 enjoyable bearable

I loved to take you swimming,


and dancing

I'm gonna be honest..

I've strayed away a few times.

I've tried to replace you.

But nothing could ever come close to the way you've made me feel.

I've loved you backwards

and sideways.

For over a year I knew you only as orange. But you really blew my mind when your chameleon qualities emerged. One day after an unfortunate run-in with Papa's dog you suddenly changed to purple.

and then pink!

But now I feel like you're just starting to try too hard.. Green? Really??

It's becoming apparent to me that maybe it's time to move on.
And when I say "It's not you, it's me" it's actually really you.
The thing is.. you make me feel tired. You make my eyelids droop.

Bottom line: You make me fall asleep.
And since I've decided I no longer want to take naps nor fall asleep easily at night, we just need to be done.

I know it will be a little awkward for awhile.
My mom and dad really liked you.
They keep asking about you. Wondering what went wrong. Trying to set us up again.

It's not going to work.

I'd like to say that maybe some day we could be friends.
But the truth is.. I really don't think we can be.

We. Are. Over.

Thank you for the past 21 months.

You'll always have a special place in my heart.
Just not in my mouth anymore.