Monday, December 31, 2012

a yellow chair

Today I'm painting a chair yellow.

As I carefully sand it down, I picture it tucked away in a corner of my little black and white kitchen, adding a touch of cheer even in these cold winter months. As I brush on the first coat of primer, I relish the cocoon of silence surrounding me broken only by the slight strains of classical music coming from Addison's room. The piano performing something Baroque is accompanied by soft snoring from Carter's room.

Though my hands diligently work their therapy magic, my mind spins- thinking, wondering, puzzling over this past year.

I wonder what the balance is between working to become a better version of myself and simply just accepting myself for exactly who I am. I think of the stress that I place on myself from trying to be the best, do the best, push forward to the next phase when everything just seems to push back stronger than I can fight. I puzzle over choices that I make every day, wondering if I'm placing priority in the right places.

I'm not going to write a highlight reel of fabulousness from this past year like I'm seeing done on so many other blogs. 

Because I'm painting a chair yellow.

One stroke at a time the drab brown is transformed into the color of my current obsession- yellow. The color of smiley faces and lemons. I'm not sure what 2013 is going to bring. I'm not making a list of "pushing towards perfection" because I'm exhausted from that being the theme of 2012 and letting it control me.

I'm just going to take it one stroke at a time- careful to not drip the paint or let it clump together in a pool of excess paint. While I'm concentrating on that then my mind can't linger on the pressure cooker of opinions and standards swirling all around me.

While I paint I think about how thankful I am for all of you. You read my blog- you share it- you talk back to me. I love what we have here, and I love that you make that possible. Thank you.

I smile as my two children come to mind. Perfect little mischief makers that I love with such intensity that I don't even know how I survived before they were in my life.

My husband who found a way to make playing in the snow a career is busy working, but I wonder what he'll say about my new yellow chair.

Stroke, stroke, -wipe splatter off wood floors-, switch brush to the other hand, stroke, stroke

A string orchestra joins the piano in a lively Classical piece, and I let myself stop thinking and just suspend in the moment.
But that only lasts for a brief minute because then my mind begins to work on my Costco list for this afternoon. Hubs will probably like the yellow chair a lot more if there's food in the house when he comes home from work.

My spirit settles into something resembling happiness as I know that despite my tendencies to be my very worst enemy, 2013 holds a lot of promise....one stroke at a time.
Happy New Year
no, really. (-:

Wednesday, December 26, 2012

Merry Christmas from Addison

Hello all- Addison here.
I'm dropping in to give you a bit of an update as to what I've been up to lately. I noticed that Mommy hasn't posted much lately (slacker), so I thought I would step in like the big helper that I am. (She said something about excusing the "poor picture quality", but I'm just going to assume that it was just code for some sort of laziness)

Soooooo it's come to my attention that this week is something called....Christmas? I don't really remember this phenomenon happening last year, but let me tell you, this year it is awesome. Naptime is optional, bedtime is nonexistent, desserts are plentiful, and everyone keeps giving me new stuff!

I can whine, cry, and wiggle to freedom whenever I want because there's always a new set of arms ready to give hugs. I'm liking this "Christmas" thing.

Mommy is also discovering that I'm a much bigger girl than I look. I tell her to STOP TREATING ME LIKE A BABY! I am almost THREE.

I can help in the kitchen now:
 SOMEONE had to taste test those gingerbread house pieces. Would hate to assemble that entire house before we discovered a sour tasting roof.
 I also helped assemble said gingerbread house (after my nibbles were covered in frosting...what? I thought they added character)
 Well hello there, bowl of marshmallows that someone thoughtfully left right in front of me...
 and this? Whatever it is....delicious...
 Not too shabby, if I say so myself. 
I can personally vouch that everything was properly taste tested.
 Excuse me, I have a marshmallow flavored itch on my tongue.
 now we're talking
 I love my friends Elsie and Maizie. They help teach me how to act like a big girl. 
 Lately mommy keeps putting me in front of this large green thing covered in lights that I'm not allowed to touch and demanding that I smile. What's with that?
 I will smile when I want to.
 Speaking of being a big girl, I got a seat at the "big person's" table this year at Grandma and Papa's house. I brought with me the philosophy that forks are overrated. Fingers do the trick nicely.
 Big parties are nice and all, but sometimes a girl just has to sneak off to a quiet corner and compose herself with a good book.
And someone please get my mommy a calendar.
 "But I wore this bell yesterday!"
 Something about this guy:
 We'll call him the official party pooper:
 Yes Carter, you can stay in the pack 'n play while I PLAY WITH YOUR TOYS!!!!!
 Are you sure Santa didn't mean this musical guitar for me????
 I have never heard a dirtier word than "SHARE". Seriously, who comes up with this stuff?
 GET IN MY BELLY 
 something about this guy:
 Cousins
 Yeah, I got this "Pop Goes The Weasel" business DOWN.
 something about this guy:
 this, THIS is the life:
 Mom said something about getting a cousin "matching pajamas" picture. I made sure that it was awesome because I'm thoughtful like that:
 That Papa guy sure can rock a good book:
 Something about this guy:
 yes, please
 And now it is the day after all the excitement. I'm recovering by watching Signing Time in this new chair that grandma made me.

Life is rough:
Hope you all had a very Merry Christmas. Rumor has it that my slacker Mommy didn't even send out Christmas cards this year. Tsk tsk. I have absolutely NO idea what she was doing instead. Now if you excuse me, I have a pile of new toys to scatter.

Toodles,
Addison

Friday, December 21, 2012

Cleaning For Company

Just in case any of you struggle with cleaning your house for company while you have little "uncleaners" following your every move, I put together a foul proof plan to make sure your house looks its best for all of your fabulous holiday entertaining. (and if your children HAVEN'T stained your furniture, decorated your walls with oatmeal, hidden various food items around the house to go bad, spiraled your laundry out of control, and just generally "disastered" the house...you probably shouldn't read this (unless you want to feel really good about yourself)

How to prepare your house 
for holiday company in 20 easy steps:
(you're welcome)

1. Find large cardboard box(es)

2. Pick up everything on the floor that isn't supposed to be there and place it in cardboard box(es)

3. Hide cardboard box(es) in the basement

4. Attempt to locate the source of "the smell"

5. After six hours of searching without finding anything "smell" worthy, give up and pray to the Febreze gods 

6. Put up a "WARNING Construction Zone" sign up in the kitchen and follow through with a few well-placed hammer holes into the drywall so it looks more believable

7. Play "fake Yuletide fireplace" on the TV (don't underestimate the power of a warm and fuzzy ambiance)

8. Light at least one Yankee Candle Apple Cider scent in each room (because sometimes even the Febreze gods need help)

9. Throw all of the toys outside and hope for snow 

10. Seal off the bathroom with more "CONSTRUCTION" signs and leave directions to the nearest gas station on the door (bonus points if your note can be sung to the tune of a Christmas carol)

11. Swaddle your children in Swiffer material and tell them Santa is watching to see who can do the most gymnastics "log rolls"

12. Take the bulbs out of 75% of your light fixtures

13. Prepare a story about how the dim lighting really puts you in the Christmas spirit 

14. Splatter oatmeal more evenly around the large blobs already dried onto the wall to create a festive pattern

15. String Christmas lights over the large pile of laundry constantly left in the corner and put a few perfectly wrapped presents at the base (perfection is important)

16. Replace all of your Christmas cards with "Get Well" cards (for added effect, find an old hospital bracelet and tape it back onto your wrist)

17. Hang a large sheet over the doorway to each bedroom and explain to your guests that that space is under quarantine for the deadly (word of choice) virus

18. When the children refuse to cooperate beyond one log roll each, scatter peanut shells throughout the house and announce that this Christmas party is Texas Roadhouse-themed

19. Hide stained furniture in the basement next to the large box full of "randoms"and be prepared to tell a hysteric story about how it was all stolen right before the guests arrived

20. Shred all of your couch cushions (the rest of the way) and dramatically proclaim that you couldn't remember which ones you hid the diamonds in

So there you go.

Follow these steps and you will be ready to make party memories that you will never forget.

p.s. after I entertained myself by writing this list...I then rolled up my sleeves and actually cleaned my house (with my husband's help because this blog post inspired him to keep a closer eye on me...win/win)



Thursday, December 20, 2012

Is Her Life Worth It?

I have a very special treat for you today. Today's post was written by my friend Maria. Maria is a friend that I've never met in real life, but after countless blog posts, emails, Facebook messages, and instances of mental telepathy (too far?), I truly feel like I have. 

Snarky, hilarious, thought-provoking, insightful- Maria writes from the heart. Hers is a blog that I always make a point to read because I know I'll leave with a smile or "good" tears from an amazingly written post. (Added bonus: frequent pictures of three adorably cute children)

I hope you take the time to read this beautifully expressed post about her journey to acceptance with her daughter who has CdLS. (and if you have no idea what CdLS is, go check out her blog!) While reading what Maria wrote today I cried, smiled, and felt the overwhelming love that she has for her daughter jump through the screen. 

Without further ado:

It's hard to believe it's been one year..

One year since Ella got sick.

One year since they told me "Your baby (who was only eating formula and jarred baby food, mind you..) has Salmonella Poisoning."

One year since they sent us home after a long week in the hospital with slightly sunken eyes and an explanation of "She might be a little dehydrated" but "She should be okay."

One year since I rushed her back to the hospital a mere 16 hours later, asking my then-3 year old the whole way, "Is Ella still awake?" "Are her eyes open?" Is she breathing??"

One year since the doctor told me my 9 month old daughter's kidneys were failing and she needed fluids immediately through an IO (basically a metal straw stabbed into her leg bone) after numerous failed attempts at an IV in her vein. And after that didn't work either, another IO drilled into her other leg bone to get her much-needed fluids.

One year since I sat terrified in that helicopter, listening to the roaring engines and whirling blades above me, waiting to be transported to a larger hospital.

One year since we arrived at the larger hospital, only to find out Ella's tiny little 14 pound body was going into shock from all the stress and she started to show signs of multiple organ failure.

One year since my husband and I went to sleep on the pull out hospital bed in our PICU room, only to be awakened by the nurse and doctor the next morning grimly telling us to "Get up. Get yourself a cup of coffee. Whatever you have to do to wake up. We need to talk."

One year since the doctor told us the devastating news that we could keep doing what we were doing-pumping Ella full of fluids- but it wasn't working. Or try surgery to put a dialysis port in, knowing that wasn't guaranteed to work either and her body might not be strong enough to even survive the surgery.

One year since I held my baby girl for what I thought was certainly the last time and fought back the thoughts trying to silently creep into my mind of wondering what songs we would play at her funeral.

One year since I kissed her sweet little cheek, amid the tubes and wires and monitors and watched them whisk her away to surgery.

One year since I waited numbly in the busy surgery center, curled up in a chair in the fetal position with Ella's pink blankie clutched tightly to my chest, my stomach in knots, threatening to lose its contents at any moment (while my husband munched absently on a stack on cookies beside me...)

One year since I thought my boys would never see their sister this side of Earth again.

One year since we were brought back in a private room when the surgery when finally over, expecting the worst possible news, wondering how I would react.. only to sit in disbelief and listen to the surgeon nonchalantly say, "Everything went good." (Those doctors really should learn to show some facial clues of 'everything went good' when they begin to walk you back to that room..)

One year since Ella's kidneys started to slowly function again and every single wire, tube, machine, monitor that had served such amazing purpose of keeping my daughter alive was removed one by one.

One year since we were overwhelmingly blessed by the complete love and care, thoughtfulness, and generosity of our family, friends, neighbors, and complete strangers.

One year and I finally know why Ella got Salmonella Poisoning. Not HOW.. No no no.. THAT I will probably never know. But why?... I think I have an idea.

I've written about when Ella was first diagnosed with Cornelia DeLange Syndrome (CdLS).. how I really didn't believe what the doctors were saying. I was certain they didn't know what they were talking about. I couldn't believe anything was wrong with my perfect baby. Sure, she might have a few things 'different' about her, but that didn't mean she had some rare genetic syndrome that seemingly no one had ever heard of. I mean.. that wasn't possible. I didn't smoke. Didn't drink. I ate healthy. Took my vitamins. And we prayed for the baby every night. So there. Did you hear me?? We prayed for her. There COULDN'T be anything wrong. There was no possible way our perfect little family could be disrupted by something I thought so tragic as a child with special needs, a child who was different.

Yet, after a few painful months it slowly started to become apparent that maybe those advanced medical degrees really did know a thing or two. Maybe Ella did have CdLS. But that didn't make accepting it any easier.. I didn't want it to be true. I still thought I could wish it, or pray it away. I was tortured by it. I was really in SUCH denial, I couldn't talk about it. I didn't want to tell anyone about it. Didn't want to admit it. In my heart I began to realize she had it, but I somehow thought if I didn't talk about it, maybe no one would even notice and we could go on living our "perfect" little life, without being "tainted" by this defect. And if no one knew about it, God could still just "heal" her and take this horrible thing away, right? And we could go on pretending everything was "normal."

And then last October when Ella got sick (the first time) we had to transport her via ambulance to Sioux Falls. We didn't know what was wrong and it really didn't seem TOO serious.. we just wanted to be in a place that could better get an IV in her tiny veins. The EMT in the ambulance started asking me health questions about her, going through her medical history, etc. I told her all about the heart defect, her small veins, her RSV at a young age and maybe even mentioned the microcephaly.

But I couldn't tell her Ella had CdLS.

I couldn't even tell the EMT she had a genetic syndrome. What was wrong with me?? That could have been a crucial life saving piece of information! But my mind kept racing.. "Well, they think she has it, that doesn't mean she does.. and why should I have to tell this lady, this stranger, and actually spat the words 'My daughter has a rare genetic syndrome.' I mean, if it's that important then I'm sure it's in her file. Why should I have to go through the agony of actually saying that bitter 4-letter word out loud?"

About halfway there I did muster up some courage to semi-mutter the words, "Oh, um.. by the way.. umm.. they think she might have..uh... this thing called... Cornelia De Lange Syndrome... They don't really know for sure, but.. maybe.." I had to fight back the tears while saying it and it broke my heart into a million tiny pieces, but I said it.

Why am I sharing this?

Because as you know, things took a turn for the worse after that. We spent a week in the hospital, learning Ella had salmonella poisoning, were discharged and about 16 hours later were life flighted (via helicopter this time) back to Sioux Falls. She was severely dehydrated, her body was in shock and her organs were shutting down. We spent 2 days pumping her little body full of fluids, only to watch her  body swelling to a very abnormal size due to the damage done to her kidneys.

Things were not looking good.

At one point, surrounded by tubes, wires, monitors, medicines, breathing machines.. I wondered.. "Is this what my life is going to be like from now on?" Is Ella going to spend years of her life in and out of hospitals? Are we going to be making emergency trips like this frequently? Am I going to become a frequent ambulance/airplane/helicopter traveler? Is she going to be hooked up to tubes the rest of her life? What about our other two children? How can they possibly live any kind of normal life? What about other future children? I've always dreamed of having a big family. I was NOT done with 3 kids. How would we possibly manage with Ella's medically fragile condition and having more kids? We had went from spending 2 nights in a hospital total with the boys (not counting their births) to 2 MONTHS in the hospital during Ella's first year. Why would God do this to us??

I sat by her side, looking at her tiny body fighting for her life and painfully wondered "Is it worth it? Is it worth the fight? Is it worth turning our lives upside down for? Is Ella's life worth sacrificing so much of our own? Maybe.. just maybe.. could it possibly be better for her to not make it through this? Would it just be easier that way?"

When the doctor woke us up the next morning with the "We need to talk," speech, we as parents, were put in one of the worst and most important positions of our lives. Making a choice for our daughter that could potentially impact if she lived to see another day.

After much praying/talking/crying we decided we needed to do something. The medicine they were giving her wasn't working and her body was taking on more fluid by the minute. We were watching her get worse and worse, her body becoming weaker and weaker. Her lungs were filling with fluid, her heart was having to work harder.. We couldn't just sit back and watch that, knowing we could be doing more.

But in those moments between that decision and them whisking her away to surgery I realized something life altering.


I wanted her to live.

I wanted her to live more than ANYTHING in the world.


I know this must sound awful, that a parent would finally realize that they don't want their child to die, but if you've never been through it, please don't judge... I realized in that moment that it didn't matter if Ella had tubes coming out of every crevice in her body. It didn't matter if I had to push her around in a wheelchair the rest of her life. It didn't matter if she was mentally retarded, never talked, walked or ate by mouth.
IT DIDN'T MATTER!!

I loved my daughter just the perfect way she was made and I wanted more than anything for her to live.

This is a picture that was taken of my husband, Ella, and I right before she went into surgery. I honestly thought this was the last time I would hold her on this earth.


I've never shown anyone this picture before (so why not start with posting it for the world to see, right??) Looking at it brings back such painful memories, such sharp images of those heart wrenching moments. Ella was wheeled into surgery, looking so so sick. One of the hardest things I've ever had to do-give her one last kiss and watch them whisk her away from me, when I finally knew that I would do anything for her. That it was worth it. Whatever we had to do.. It would be worth it to see that sweet baby one more time.

Those hours in the waiting room while she was in surgery were the worst of my life. I wanted her to live more than anything in the world, yet I felt certain that I had just held her for the last time. The clock ticked by mercilessly slow. Every minute was like an hour. Or two. I had a horrible feeling in the pit of my stomach and I felt like I just knew she wasn't going to make it through the surgery.

But I knew I wanted her to. And I knew my heart would be drastically different if she did.

As horrifically painful as that day was, I think God knew I needed it. I needed to know without a doubt that I loved my daughter no matter what physical, mental, or emotional limitations she might have. I needed to know that I loved her unconditionally. I needed to know that no matter WHAT I would fight for her to live every single day. That even though she was not exactly the baby I had hoped and prayed for, the baby I thought I wanted, she was still perfectly and wonderfully made. That maybe the real problem didn't lie in how "different" Ella's life was going to be, but in how my heart was reacting.

It's been a year. And the changes around here are pretty remarkable-the NG tube is gone, the doctor appointments are back on yearly instead of weekly visits, Ella is oh-so-close to walking, and we haven't had to spend another single night in the hospital. But the changes in my heart are the most drastic. I no longer look at my daughter and see the characteristics of a genetic syndrome that used to plague me, but instead a beautiful individual bursting with life and personality. I no longer see her limitations and the things she "should" be doing, I now see the endless opportunities that await her. I no longer question "Why??" it happened to us. I just feel blessed to have her in our life.

With Ella, I can honestly say I've been through my lowest of lows, and because of that my compassion for others has grown immensely. I have needed help and been reached out to, and I now give more freely to others who are in need. I have been overwhelmingly blessed with kindness and I try every day to "pass it on." I have realized that instead of a blank stare and a wondering look of "what is wrong with your baby?" a warm smile from a stranger can turn your day around. I have learned so much about people with special needs and their families and have opened my heart more than ever would have been possible without Ella.

Nothing about parenting is "easy." In fact, as I type this all three of my children are cycling through some nasty respiratory gunk, fevers, AND a GI stomach bug at the same time.. NOT easy. And parenting a child with special needs, balancing doctor appointments, therapy sessions, and learning so many things you never ever even wanted to know about genetic syndromes, testing, your child's anatomy, or IFSPs and IEP's is definitely not an easy task. But the rewards are there. And they are great. The blessings may look different from those with typical children. They may not come in neatly tied up packages of on-time developmental milestones, picture perfect family photos, and the assumption of an "easy" life. The blessings of parenting a child with special needs may take a little more searching and they may come surprisingly out of the blue like your almost 2 year old taking her first steps one day, or your mostly non-verbal 4 year old telling you 'I love you" out of the blue. But they are there.

Ella's life has been SO much more worth it than I ever imagined and I can say without a doubt, I will never EVER again think "Maybe it would just be easier..."



Monday, December 17, 2012

Wake Up Call

I've been struggling with something lately. Something entirely new to me. Stuck at home with sick children for too long while contemplating my year and what I hoped it would look like verses what it actually turned out like? I have been depressed.
 I know it's ridiculous. I have two beautiful children, a loving husband, a warm house, wonderful friends, and an amazing family to celebrate the end of another year. But anyone who knows me at all knows that I am extremely competitive. I want to win at this game called life, and I work with a singular purpose to do better- write more brilliantly- parent/housekeep/schedule organize with more awesomeness.
 And looking back on this past year, I feel like I haven't measured up. I feel like I have failed, and I feel like everyone around me notices and talks behind my back about what a disaster I am. I know that (hopefully) the world isn't judging me like that, but some days it's hard to convince myself of it.
 So I have been wallowing. Neglecting chores that I know I should do but just can't bring myself to do them because I know that they'll be undone ten minutes later. Holing up in my house even more than necessary because I can't bring myself to leave it. Focusing on goals that I haven't met and convincing myself that I'll never be good enough to get there. Fighting with my husband just for the sport of it. Staring into the smiling faces of my children and trying to force a smile in return.
 I beat myself up at every tiny failure and convince myself that I'll never be more than that.
 I just wanted to skip Christmas this year. I wasn't feeling the warm, fuzzy spirit of Christmas as I canceled my gingerbread house party before I even planned it, worrying that my children would infect the world if we broke our long quarantine.
 The normally bright shiny moments seemed too dull and ordinary to matter.
 And last Friday as I was trying to snap myself out of it with a blog post Christmas card, I saw the news of the shooting. I heard of all of those children who wouldn't get one more Christmas. I thought of those mother's broken hearts and how nothing would ever feel warm and fuzzy to them for a very long time.
 As some of you remember, my sister lost her son this year. He was one week old- beautiful, handsome, amazing, healthy, and it was a complete surprise when a virus unexpectedly stopped his heart at seven days old. And something I learned from watching my sister deal with the loss of her little boy is that nothing makes this better. There's nothing you can say. Nothing you can do. No sort of lemonade can be made from the lemon of losing a child. It is tragic on every level. At one point in my life I thought that the WORST thing that could happen as a parent is to have a child with special needs. But that's not true. The worst thing that can happen to a mother is to lose the little one who made her a mother.

And with the memory of my sister kneeling before my nephew's tiny casket heavy on my heart I can't stop thinking of these mamas (and dads) dealing with this loss compounded with the worry if their children suffered; if they were scared; how they never got to say goodbye or "I love you" one more time; how they wouldn't be able to give them the Christmas presents they've already wrapped.
 It feels selfish to turn around and then say how thankful I am for my two little ones. It feels thoughtless to avoid the intensity of their pain just for my own peace of mind. It feels weird to continue on as if nothing happened because so many lives will never be the same again. And yet on every level this was such a wake up call to me. 
 Nothing transforms the mundane into life's most amazing moments like the thought of not being able to have them anymore. Motherhood is not a right. It is a privilege. 
 I can sit at home and feel sorry for my pathetic little self. Or I can capture what I have been given and enjoy it while it's mine. I can make the most of my days or I can roll my eyes that they're all the same. I can whine about the lack of exciting in my life or I can be thankful for the lack of troubled drama.
I don't know why Friday's tragedy happened. I don't know what to say to wrap up good feelings in a pretty red bow. I don't know why these precious children didn't even get a chance at life. I don't know who's right in fighting for certain issues to make sure that this never happens again.

But I do know that my peace and hope comes from someone far bigger than myself. I do know that the lives of my children are held in the hands of an almighty God. I do know that God didn't forget those victims on Friday. I do know where to find peace of heart even in the midst of deep hurt. I do know that my obsession with failure is ridiculous in the grand scheme of what really matters. I do know that I have been given one beautiful life to spend wisely. I do know that each breath that I take and each breath that my children take is not to be taken for granted.

I'm not saying that I'll never struggle again. I'm not saying that life is suddenly easy. But today I am thankful for a new perspective.

As I continue to grieve with and pray for these families, I am reminded from where my joy comes. I am reprimanded of my own selfishness in discontentment with life. I am hopeful that this tragedy can somehow be used for a greater good. I am counting today as a miracle. I am hugging my children tightly and smiling genuine smiles in response to theirs.
I'm choosing to celebrate louder, live more fiercely, love bigger, enjoy with more awareness, and laugh with more abandon. While I can.