Monday, April 30, 2012

In Case You Were Wondering...

What is it like to have a baby AFTER having a baby with Down syndrome?
 I have to be honest. After everything we went through with Addison healthwise in her first year- when Carter was born, I half expected him to come out walking, talking and reading Latin simply because he didn't have a prenatal diagnosis.

After experiencing delays, four surgeries, oxygen at home, a g-tube, countless medicines and therapies etc etc etc- when anticipating a typical child, I thought that meant that he wouldn't have ANY struggles (you can laugh at me all you want, but my motherhood experience has been different than most. I think unrealistic expectations are a part of that package)

On Wednesday, Carter will be 8 months old (WHERE HAS THE TIME GONE???)
and in that time I've learned a lot about parenting a child with only 46 chromosomes. (hehe)
Here are my thoughts on the matter:

-Addison stayed so small for so long and was my little baby for a loooong time before she turned "big girl". Since Carter has grown like a small elephant on steroids- I feel like I have missed an entire stage with him.

-Whereas she would practice a skill for months and months and then finally tentatively try it, he thinks about it for maybe a day or two and then just takes off. This is both encouraging and yet incredibly frustrating. Yes, we don't have to work as hard on milestones...but the celebration is far less triumphant because of the small amount of work that it took to get there.

-I oftentimes have to stop and remind myself that he's still only a baby. Because I've waited so long for Addison to achieve certain milestones, I find myself putting pressure on Carter to get them all super fast because I somehow "deserve" that this time around (and his large size makes him seem fair game for these expectations). lol. After laughing at myself (pretty much daily), I calm down and realize to let him achieve at his own speed, just like I let Addison!

-In Addison's first year, she had at least one doctor's appointment a week (sometimes more).
We're going in a couple of weeks to Carter's (gulp) 6 month check up.

-I had to convince her to eat, and she was extremely picky- taking only a few small bites and then refusing certain textures, etc (and of course there was her g-tube). Carter's sharp bites take the varnish off of the baby spoons and the tips off of my fingers. (although he does have some slight pickyness, he really does LOVE to eat) And things that Addison before REFUSED to eat, she now loves because she watches her brother inhale them with such satisfaction. (insert evil chuckle of a plan that's working)

-I have taken great care in purchasing Addison very nice clothes. She stays in them for so long, she oftentimes wears brand new clothes out (4 seasons later). Carter has skipped several sizes entirely so the other day when he had no sleepers (unpacked) that fit him, he ended up wearing a nice girly one from his sister (he would make a pretty little girl). Yes, they are both wearing the same size 12-18 months. (they both weigh right around 22 pounds) But...I probably won't be purchasing him anything super nice until his growth levels out.
-I have worked hard to not have peg-hole expectations for Addison because of her diagnosis (instead I push her to achieve HER best), but I have a harder time with this for Carter. I oftentimes find myself insisting that he's going to be a doctor helping individuals with Down syndrome (kind of like Brian Skotko II.) Aaron always reminds me to calm down (once again) and let Carter achieve HIS best as well instead of assuming peg-hole expectations for him. I'm not sure why this is so much harder for me. Since Addison has medically prescribed limitations and Carter doesn't sometimes it's hard for me to temper my future ideals for him. (still figuring this out)

-This is going to sound weird, and some of you perhaps aren't going to understand. But having Carter truly healed me from everything I went through with Addison. It was so much more than dealing with Down syndrome. Addison had many, many, many physical battles to fight that required a lot out of a newbie mom that I'm still not sure how I made it through. Carter has been so healthy/robust from the beginning and has really completed a part of motherhood that I missed out on with Addison. Do I regret what I went through with Addison? Absolutely not- I would do it all again in a heartbeat. I love Addison and accept her and all of her experiences as the perfect plan for our family- but also? I do the same for Carter.

-The most amazing thing to me is the relationship that Addison and Carter have.
First thing in the morning when I get Addison up, she signs "Carter" and when I get him up he looks around anxiously until he spots her and then he smiles (much bigger than when he smiles at ME. sniff)
When she's in her high chair and he's circling her in his walker, she's always passing off her food to him. This morning she grinned at me with a triumphantly empty tray, and I was super proud (until I discovered her entire serving of pancakes being crushed in Carter's curious little hands a few feet away)
If she isn't being particularly gentle with him, he beams and grins "BEAT UP ON ME AGAIN!" because he loves any and all attention from her. If he gets up from his nap before she gets up from hers, he roams the house in his walker looking for her. He usually ends up in the doorway of her room, watching her sleep and waiting patiently for her to get up and play with him.

He chases her around the house in his walker and corners her in tight places, but in turn she uses him as a climbing device when she can't find her stool (true story).

I often wonder when they get older and perhaps Aaron and I aren't around anymore if he'll be willing to help take care of her. I wonder if whoever he marries someday will love Addison too. I wonder if he'll ever resent being her sister because of the extra responsibility that might fall to him. But I honestly thing that he will always love her and be there for her. Their love will change and grow as they go through different stages of life. But I truly think that he will always be her biggest cheerleader. I do think that he will always watch out for her. (I have no proof of this, just a mother's intuition and hopes for how Addison's diagnosis might mold him into a more loving and accepting individual than he might have been otherwise)...I could do an entire post on this point alone...
The truth is- even though I have two very different children- I love them both very fiercely.

I accept them both for exactly who they are.

I have "enjoyed" both of their different babyhood experiences because that's what I had to go through to get exactly them.

I think I appreciate every tiny part of Carter's babyhood so much more because of everything Addison taught me- nothing is taken for granted.

I laugh at their adorable interactions, and I look forward to seeing how this will change over time.

I love being a mother, and I love my full little nest.
(this picture needs a caption)

(and yes, I am still learning every day, and no doubt this list of observations will be drastically different even in a year. but this is my report up to date)


Sunday, April 29, 2012

When asked to name the most comfortable napping position




I'm sure this is what immediately comes to mind:
(yes, her eyes crack open sometimes when she's asleep...gives Aaron the willies)

hope your Sunday afternoon nap was more restful than Addison's....

Thursday, April 26, 2012

Mary had a little lamb

Except her name was really Addison...and she kissed the lamb on the lips...and by lamb I mean big angry mama sheep (unfortunately I did not capture this on film)

Because of so many requests...

a few pictures of Addison.

During physical therapy this week:
After a particularly successful trip to Costco (and by successful, I mean that Addison located the diaper bag's stash of m&ms while I was unloading the groceries):

aaaaaaannnnndddd

meeting a brand new little lamb:
after staring for a minute, she gave sweet hugs totally of her own accord
and then held her new friend.
She seems to have a thing for animals. sigh. I think we're going to have to get her a pet. (not a cat since Aaron is allergic, not anything that will shed, something that will eat up all the crumbs off the floor, something good with babies, something that doesn't need a fence...yikes. a crumb-eating pet rock?)
Her super awesome friends. Right next to her is her NICU buddy. Hard to believe how much they've grown since their isolettes were side by side(ish)! and next two him? Two of the best girlfriends that any little girl could ask for. (-:
Unfortunately those are some of the only pictures I have from the visit to the farm. At the time, I sensed that juggling two babies and keeping the camera (and Addison) from falling into the large pile of llama poo was more important than a photoshoot.....I know, clearly my priorities are all wrong. A picture of Addison in llama poo would have been simply priceless (and way too disgusting for me)

p.s. be proud- the special sock count is still at four matched pairs. YAY! thanks for all of the suggestions. Glad to know so many people that can help me with my woes. (-:

Tuesday, April 24, 2012

put a sock on it

I have a mega, major, big, HUGE (get the idea?) housekeeping confession to make.

Are you ready for it?

(really?)

OK here goes- I HATE SOCKS.

Not wearing socks. I love a good comfortable slip-on pair of toe warming goodness as much as the next girl.

But where socks become my downfall is when they go through the laundry.

I'm sorry, what?

LAUNDRY!

There you have it. My greatest weakness has been exposed.

socks.in.laundry.

Why, you may ask? Because socks come to my house to DIE.

But only one at a time. A pair never goes missing. No, just one at a time.

I can always find ONE of my favorite pairs of socks that matches my outfit perfectly, and thirty minutes of searching for the other special sock later, I finally realize that sockless sounds like a good look for the subzero temperature of that blistery winter day.

It's kind of like the block monster that lives under the couch. Every time the kids play with the blocks (at least once a day) ONE block magically disappears. At first I didn't notice, but after a week, the block container feels noticeably lighter and after a month I start to wonder why Addison's 75 piece block set has been almost cut in half. Where do those blocks go? No one knows (except that monster under the couch with an insatiable appetite).

Anyhoo, back to the socks. It's a real problem. For most of our marriage, we have had an odd sock box (about the size of a dresser) that keeps the extra socks that are floating around. Where did the other half of the pairs go?? Nobody knows.

A few months into my journey of housekeeping, I discovered that MATCHING socks are highly overrated. Wearing a pair of merely coordinating socks is now a very acceptable in-thing (what? you haven't heard about this?).

"well, they both belong to the greenish family" I rationalize as I smartly (or not so) step out of my house wearing my mismatched friends. What, like there are police for this kind of thing?

Tall socks, plaid socks, small socks, colored socks....socks, socks, socks

they all come to my house to die. When I put a new pair in my basket at the store, I swear I hear them screaming their last wish (to be rescued from me, no doubt)

As I count the specific pairs into the wash, out of the wash, into the dryer, out of the dryer and then up on the couch to be matched...somehow, somewhere half of the pair slips away- dissolves into thin air-gets kidnapped by the block monster-runs (or hops) far, far away-I really don't know.

(don't even get me started on baby socks- having to search for things that tiny should be ILLEGAL.)

I think someone should invent a surgically placed sock.

I would choose a black pair to be surgically placed on my feet since I wear a LOT of black. This special sock can be washed in the shower and yet will dry fluffy and comfortable while still in place. I NEVER will have to take them off to wash them with the rest of the laundry, therefore I always keep both of them, together.

Pure genius, I tell you. (Shark Tank, you should get on this billion dollar idea quickly)

Backing away from sarcasm and focusing on the issue at hand, WHY am I airing my dirty laundry today(pun intended)?

To point out the irony in life.

You see, when Addison went back in to have her SMO (foot braces) adjusted last week, they added a toe strap. (Which has been hugely helpful for her!)

But that's still not the point.

With these special braces, she can ONLY wear medically prescribed socks (WHAT???)

and get this-

insurance will only pay for FOUR PAIRS of socks a month.

The sock gods have come back to bitterly punish me for years and years of abusive sock transgressions.

Addison HAS to wear her braces, and she HAS to wear socks under them or else she'll get horrible blisters and such.

and I only get FOUR CHANCES to keep the pairs together.

Oh, and the medically prescribed toe-separating socks have a specific Right and Left sock that can't be interchanged.

Are you kidding me?

I have a bad feeling that I'll be back in a week holding 4 Rights with a sad little girl who can't wear her SMOs because her mommy lost all of the Lefts due to her horrible sock management skills.

Excuse me a minute as I crawl under a large box (ironically the misfit sock box) and think about what I have done.

Oh the agony.

p.s. any and all "sock management skill" techniques are welcome, but please, no lectures. This sockless wonder is well aware of her sins.

Monday, April 23, 2012

Is Motherhood Enough?

"You're so talented"

I was often told as a child.

"You're going to go far in life!"

I was frequently promised as a teenager.

And yet here I am, employed by two little people that produce snot and drool faster than I can breathe with frustration "I forgot to buy more tissues YET AGAIN."

When I was in high school, I dreamed of someday of playing professionally in an orchestra. Music was my passion- clarinet was my obsession. In my mind's eye, I would not be successful until I landed my dream job of principal clarinetist in a full time orchestra.

I haven't touched my clarinet in months.

I imagined that each week would include several performances that would be doused in spotlights and enthusiastic applause.

I now spend each week slathered in drying baby food, knee high in dirty diapers, and always one step behind on the housework.

I worked hard for that masters degree in clarinet performance, and yet now it's only a piece of paper placed in our portable safe that is buried under a pile of "next size up" clothes in my son's closet.

What happened? Have I failed?

I'm not getting performance reviews- critiques telling me I'm doing an inspiring job-audiences jumping to a standing ovation.

My children clap for each other (sometimes I pretend it's for me). My husband constantly compliments my cooking and my efforts around the house.

But I seem to constantly question myself- is it enough?

Before I became a mother, I was constantly pushing myself towards success. Achievement was my motivation. I visualized my future, and in that future I had a housekeeper and a still-white sofa.

I would love nothing more than to don professional, non-stained apparel and march out the door to a job where I'll be around people who actually talk to me instead of the littles who simply stare back at me with wide blue eyes, keeping all thoughts private for the time being.

A place where achievement is measured; a paycheck is awarded; efforts aren't undone as soon as naptime is over.

But even though that desire oftentimes can be found floating around my head, it only lasts for a fleeting moment.

Yesterday I was thinking how I need to PROVE MYSELF. I need to do something big to show the world that I AM "going far in life". I need to make a difference in something other than the constantly evolving laundry/dishes saga.

And yet, even as those thoughts graced my tumbled intellect, I lay on the floor surrounded by scattered blocks and two children happily building with them and I wondered- why do I feel that way?

As Addison giggled and hopped on board for a horsey ride, I smiled in return and did my ab workout/bouncy ride for her. Carter laughed with glee because Addison was laughing- the blocks forgotten.

I sat up while still holding Addison and stared into the beautiful blue eyes that hold so much personality. Her slim body came closer, two arms stretched out and slowly stretched around me. A head graced with pigtails leaned against my arm and tiny hands patted my back.

When the hug was finished, I leaned back to smile and thank her through sign language, and she then leaned in for a long kiss on the lips.

I wrapped my free arm around Carter and pulled him into our circle, and for the first time in a long time, I felt complete.

No rushing around attempting to prove my worthiness around the house. No elaborate (or lack thereof) meals. No 6 mile runs. No book chapters finished.

Just hugs, kisses, toothy smiles and tiny hands patting my back.

Complete.

And in that moment, I knew in my heart that even if I never get my book published; even if I never become a professional musician; even if I never stand in front of another classroom-

motherhood is enough.

And while contemplating my contentment in motherhood, I knew without a doubt that this is what success looks like for me right now.

Are my six years of higher education being wasted? Am I a failure because I didn't end up in the profession that I originally wanted? Will I wake up in twenty years and wonder what I have to show for my life?

I have two children who are completely my responsibility with two futures to prepare them for. That is truly harder than all of my other jobs combined. It takes intense dedication and a lot more work than I originally anticipated. (insert eye roll at a past version of myself)

It was while contemplating this concept, that I watched this commercial this morning before therapy:
(Thank you, Procter&Gamble for an amazing commercial!)

It made me cry.

I think ambition is wonderful. I so much admire working mothers, because I have been one and I know first hand that it is very difficult to balance all of those plates.

But that's not where I am right now in life, and I'm learning in a new way to be content with the job that was no way in my original dreams for myself.

I would dare say motherhood is the best thing that I have ever done. I have performed with a professional orchestra, but after drinking from motherhood's cup (which ironically, is full of high octane coffee)- I know without a doubt that this is where I'm supposed to be right now.

Whatever talents I might have are being stretched and used in a new way, my potential to "go far in life" is now being doubled through the lives of Chubbs 1 and 2.

I am so thankful that this is my reality, and I am so thankful for this new perspective because fighting against myself and what I think I "should be doing" is exhausting.

Time to relax the tension of the subconscious, revel in the feeling of completion that my children bring me, and oh yes- pick up those blocks.

And you know, life might dictate that I become a working mother again someday, and my perspective will shift yet again because success is an evolving abstract.

But for now? I choose to be content where I am, and agree that despite past struggles,

motherhood IS enough.






Wednesday, April 18, 2012

Addison-1 Mommy-BigFatZero

"That woman is a fool"

diners at the local Texas Roadhouse whispered behind their menus and tall glasses of glistening sweet tea.

Who were they referring to?

Why me, of course.

Standing in the doorway, surveying the darkened restaurant, I was weighed down by my very own Chubbs and Chubby. Each hip held a baby, each arm circled around a tiny back, each foot carefully stepped as to not trip with my precious cargo.

A couple days ago on facebook I mentioned that the crushed goldfish crackers on my living room floor made me hungry for warm rolls slathered in cinnamon butter at Texas Roadhouse (envisioning the crushed peanut shells infamously on the floor).

After a like minded friend chimed in with memories of sweet tea, we immediately set up a date to meet and indulge.

I needed an early time so that I could get in my dinner plans before the kids' 6 o'clock bedtime, so we agreed to meet at 4:30. I didn't think through the fact that my husband wouldn't be home for work yet (so that I could leave one or both of the kids with him), but it didn't alarm me enough to change the time or cancel.

must.have.warm.rolls.

The plan was to arrive with both kids (by myself) and sit luxuriously at a booth sipping the talked-about sweet tea while my children played happily in high chairs, charming all who might glance their way. Ten minutes later, my husband would arrive and pick up whichever child wasn't behaving (JUST in case), and I would continue with my girl's night out with one lucky, lucky child.

Well, turns out that Addison had a different plan. She did NOT want to sit in her booster seat. She did NOT want to read her books. She did NOT want to nibble on warm rolls with mommy.

News flash: children with Down syndrome can still have temper tantrums and go through the terrible twos. I know, simply shocking.

Just as my parched lips gently closed around the straw and my throat relaxed in anticipation of the refreshing beverage, Addison somehow wiggled herself out of the booster seat with evil intent. Ten times of "putting her back in" later, I gave up.

The rolls grew hard and cold. The ice melted in my tea.

Oh well, I reasoned, Aaron would be there soon. I placed Addison on the seat next to me and let her rifle through the diaper bag.

That entertained her for.....ten seconds.

She then decided to scale the back of the booth, using the booster seat as a stool to give her the leg up necessary to sling her little body over the back.

Pulling her back down to sit next to me (a couple of hundred times) did not make me very popular.

Loud "NO"s rang out through the restaurant in girlish yells/screams, competing with the deafening twangs of country music and line dancing happening all around us.

I positioned her on my lap and opened her tupperware full of goldfish mixed with cheerios. I glanced away for half a second, and she grabbed the tupperware and with one flick of her tiny wrist made the entire place rain goldfish and cheerios. Soon to be crushed snacks lay over me, the table, Carter and anyone within spitting distance.(which is super ironic since this is what made me hungry for Texas Roadhouse in the first place)

My face flamed bright red as diners brushed their shoulders free from the crumbs and continued whispering.

"Yep, we knew it. She IS a fool."

After Addison escaped my lap to play under the booth and then quickly crawled out through the high chair rungs where her brother sat, I grabbed her and held her tightly against me, sweetly admonishing begging her to behave.

Oh, I forgot to mention- Carter was scared of our waiter, so every time he came by- Carter began screaming bloody murder.

Addison fought on my lap for her freedom. She was NOT happy. It was a bit like holding a burlap bag full of angry, hissing snakes high on steroids and chocolate.

Nothing says "thank you for bringing me into this world" like a writhing 2 year old kicking you in the gut.

I called Aaron on my phone (that Addison fought to claim and talk to him herself)- he said he was almost there.

Side Note: I'm sure her  conversation would have been something like
"Hey dad, mom is making me SIT STILL. Can you BELIEVE that she would DO that to ME!!! Come soon. and bring chocolate."

I looked across the table at my friend calmly feeding her baby who was cooing and giggling.

Just then Carter left out a sweet-tea-curdling scream as the "threatening" waiter passed by for the hundredth time.

I tried to feed Addison the hotdog that I ordered her. She tasted it and then spit it on me in disgust.

I leaned down to talk to her and a mouth full of jagged teeth flashed open and very decisively sank into my jaw.

I held tighter in shock while Carter screamed yet again.

Time stood still. The snakes were biting me and the poisonous venom of dread mixed with a healthy dose of embarrassment spread quickly, threatening to shut down my mommyhood stamina.

This was a mistake.

I am, indeed, a fool. Were the warm rolls REALLY worth all of this????

Aaron finally arrived to rescue Addison (an HOUR later)

My arms were sore. My spirit was crushed.

My rolls were stone cold and harder than the teeth that had just clamped onto my jaw.

Sigh.

It seemed like a good idea at the time.

At least that's the best kind of restaurant to have a melt down in- super loud. And Carter was a doll the rest of the time (screaming aside) so I could finally eat my meal (cold), talk to my extremely patient friend, request a fresh basket of rolls and get a sweet tea refill.

All in all- it was a lovely night out.

I can say that now. Both kids are asleep in their cribs, and I am reclining on the couch laughing at my own naivety.

I forgot that Addison gets super over-stimulated by Texas Roadhouse. I forgot that she struggles to sit still. I forgot that just because I CAN for ten seconds, doesn't mean that a long sit down meal with both of them by myself in a restaurant will be successful.

Sooooooo yeah. I probably won't ever leave my house again.

After all, isn't this why delivery services were invented?????

(yes, we are working on it.....she will get it eventually, I know.)-I am repeating this over and over to myself tonight

p.s. Did you check out Addison's "reading" video on our facebook page?
p.s.s. The winner of the onesie giveaway is.....Emilie Woodworth. Congratulations Emilie! You can look forward to an adorable onesie coming your way very soon!

Tuesday, April 17, 2012

Twinsies in the Sand

 Living in the Northeast, there is an entire chunk of the year where outside playtime is rather limited, sadly.

This year dealing with temps in the high 80s in April (insert gasp of surprise here)- we were more than thrilled to begin our outside playtime with the twinsies yesterday.
 Miss Addison wasn't the biggest fan of the sand, but wanted to sit next to the sandbox and have a book read to her over and over. (doesn't she look so grown up here?)
 But she was a good sport when "put" in the sand box.
 well, for the most part.
Some days I am just overwhelmed by the awesomeness of motherhood. Yesterday afternoon playing in the sandbox was one of those moments.

 I wonder how I survived before I became a mother. I seriously can't remember any other life.

Love these two.
 Being super smart, Addison quickly found a sandbox without any sand. lol.
 She was more than pleased with herself. ha. (yes, that is sand on her chin, from sampling, of course)
What a ham.

So excited for many more outside play opportunities over the next summer months (especially since they both came back inside just exhausted after only about 15 minutes outside. Extra naps? Why yes, thank you!)

Monday, April 16, 2012

Confessions


For a long time now, I have housed HUGE guilt over the fact that I don't always reply to each comment left here on the blog. Each comment means so much to me, but after I read it I get distracted with some sort of household/child crisis and then I can't remember where to find it in my overcrowded inbox to email back. And if I just post it on  my blog, I'm not sure that the original poster can see it blah blah blah.

So yeah, most Blogger blogs can just adjust some settings and BAM they get threaded comments, but for some reason that didn't work for my blog, so I had to install a community comment thingy (don't you love my technical talk?).

Anyhoo....it's FINALLY installed! And I am so excited (yes, the smallest of things make me happy) to be able to communicate with all of you on a new level (that sounds kind of creepy, but I promise I mean it in the nicest way possible)

There are a lot of new readers around these parts, and first of all- WELCOME. Second of all, a bunch of you have been asking questions that I haven't been able to reply to. Today's post will be an attempt to clear up some inquiries in one fell swoop.

Here goes. Let's call them Confessions.

1. When did Addison get her ears pierced? When she was nine months old. I wanted to get them pierced earlier, but she sported the accessory of "nasal cannula" up until 9 months. I didn't feel that it was fair to her or me to have to do both at once.

2. What does Essex stand for? The town where I live.

3. You said something about wanting to be a writer. What are you writing? I am working on a novel exemplifying the fact that there are no guarantees of parenting through a rather intense/dramatic story line. The plot is rather complicated (it would take an entire post for me to explain it fully) and is told from different angles discussing the worth of a life while dealing with a new diagnosis that comes as a result of an accident. I have been working on this novel for almost two years, and I don't have a publish date to tell you yet, but I will not stop working until I do. (Some might call this stubbornness...but I prefer determined. ha.) I'm amazed at how much I have grown as a writer (and a person) while working on this project. As a very goal oriented person, my book has kept me sane on those days when the world seemed to be collapsing all around me.

4. I feel that you're rather defensive of your daughter's condition. Do you think you're still struggling with her diagnosis? I think every parenting journey includes ups and downs. Parenting a child with special needs can dramatically inflate both the ups and the downs. However, Down syndrome has now been in my life for almost three years. The beginning of those included times of great struggle. I wrote all about them in my very honest ebook Dreams Change. While putting that project together I really felt as though I reached a turning point in my grief. I love her fiercely for exactly who she is and dedicate myself to advocating for her to have the happiest life possible. So if you detect references into pockets of old emotion, I suggest you read around the blog a bit more to bring you up to date- if you are reading old blog posts I can certainly understand why you might think that. Yes, I had times of struggle. But all of that struggle brought me to today where you won't find a mother more in love with her perfect little girl. Sometimes I do defend Down syndrome to the world, but there's a big difference between "defend" and "defensive".

5. What does EANFE stand for? Everything and Nothing from Essex (I know, right. How lazy can I get???)

6. What kind of blog is this? While I do write posts on Down syndrome and our experiences along those lines, I also love to write tongue-in-cheek funnies about motherhood. I have two kids two and under; we have adventures that are definitely worth typing down lest someday I too look at someone with small kids and think "It wasn't that bad" from my lofty position decades removed from the pain. I do not consider myself an expert about....well, anything. Anything you read here is me shifting my way through motherhood one dirty diaper at a time. On the days where discouragement from the difficulty of motherhood starts to smother me- I choose to laugh at the ridiculousness of my day rather than cry.

7. Why does Carter use a walker? The walker is actually Addison's- but she would NEVER take a step in it. But we discovered if we put her new little brother in it, she would push it all around the house...while walking. It didn't take that little brother long to realize how it was really supposed to be used, and now he chases her around in it. Seriously it's hysterical to watch them during "walker" play time.

8. and just because I love you, some confessions of my own:
-Despite my most diligent cleaning strategies, my house is almost always a disaster. Apparently Addison learned really quickly the fun of "pulling things out" but is taking her sweet little time in "putting things in". This is what I call selective learning. Oh, and ground up cheerios and goldfish crackers. She throws them on the floor and then Carter runs over them with the walker. Seriously????

-Despite my best efforts, my hair always curls two different directions. always.

-I am working to lose the rest of my post (2) baby weight. Jillian Michaels has become my new frenemy. I'm sensing a blog post about this soon.

-I still have a Christmas wreath hanging in my Dining Room.

-Daily I struggle with trying to be the best at EVERYTHING. It's only after I sit down in the middle of my shredded living room with two half naked babies while smelling burnt dinner and reading angry emails that I realize that I'm doing good just to make it through the day.

-We lost Addison's DVD player on our trip, so she's been watching Signing Time on my laptop which means I can't read other blogs while she's distracted. (Yes, that's my subtle way of saying I'm very behind with my reading)


So there you have it. 
If you have any additional questions for me (or comments on my SHOCKING confessions. ha.), feel free to leave them in the comments because I CAN REPLY BACK TO THEM NOW!!!!! (I know, I seriously need to calm down).

Now I'm off to tend to these two who are stirring from blessed nap time: 
Happy Monday

Wednesday, April 11, 2012

the perfect baby

Lately I have had a lot of interactions that have troubled me. Perhaps it's just people thinking through the definition of words differently than I do- or perhaps people not realizing how their wording is coming across.

Seeing someone else say online recently:
"The mother was told that her child would have Down syndrome, but then, praise God- he was born perfect instead"

and
people suggesting that the reason that "extras" I deal with Addison bother me because she is then "no longer perfect"

and
friends returning from an ultrasound saying "THANK GOODNESS the baby looks perfect- no abnormalities!"

I could go on, but I'll stop there.

Let me just stand tall in my little bloggy world and proclaim to all of you that I have a two year old little girl. Her body is covered in scars from surgeries (four, to be exact), she wears braces on her feet and glasses on her eyes. She has 47 chromosomes instead of 46

and she is perfect.


How can I say that so confidently?

Because she was designed by a perfect and loving God who makes NO MISTAKES.

It's not as if he looked at her after she was born and said "oops. I really messed up that one. She's going to have to stay in the NICU for a long time and have some surgeries to fix her heart. Man, I really made a huge mistake here. WHY can't I get those chromosomal issues right? She will have such a HARD life."

No, he formed her exactly to need those things- he created every last chromosome in her body, divinely adding in the extra. He knew that she would have a hard life- and then provided all of the tools and grace necessary for her to rock the difficulty and make it almost appear easy. He then placed her in MY family because he knew that we needed her. He not only allowed her to have health problems and Down syndrome- he DESIGNED her PERFECTLY that way.

I know we all have in our mind what we think our children should be like, but just because something different comes along it doesn't mean that a mistake was made. It just means that we need to adjust our previous expectations thinking that we "deserve" a certain kind of baby.

Struggling with a child who is delayed and you don't know why?
God makes no mistakes-your child is perfectly designed.

Worrying about a prenatal diagnosis?
God makes no mistake-your child is perfectly designed.

Figuring out how you're going to raise a child with a hearing impairment?
God makes no mistakes-your child is perfectly designed.

Crying tears of anguish over a scary new medical procedure looming for your child?
God makes no mistakes-your child is perfectly designed.

All we really want in life is for people to accept us for who we are rather than constantly trying to make us into who they think we should be.


Why can't we do the same for our children?

Can you imagine? "Deanna, if I had known that YOU would be YOU, I would have ended your life before you were born because man....we really wanted a child with a different personality. Yours is rather hard to handle. If ONLY we had that perfect baby that we dreamed about before we met you."

Why can't we hold our new bundles in our arms (or peer at them in their NICU beds) and say with thankfulness "I have been given a perfect baby" no matter WHAT dim prognosis we were just told by the depressing doctor.

You may look at my life and think that you could never do what I do. You could never be Addison's mother.

Well, news flash: I look at your life and think I could never do what YOU do. Because that's just the way it works.

God designs our children perfectly and then puts them in the family that is perfectly suited to grow and stretch along with the growth of the said child.

The tendency of motherhood is often to look at our children as next year's Toddlers and Tiaras contestants. Finding faults- picking out "defects"- trying to form our children into what we feel they should be in order to win a coveted prize of awesomeness or to be the next great whatever.

Why can't we just accept them for who they are? Who they were designed to be? Who God looked at after creating and said

"This is good"

If you're so afraid of having a child who is different, who are you to judge? Who are you to look at a baby and said that he/she is imperfect just because that baby is not what was expected?

Trials in parenting are not about being fair- or about us getting more than our share. It's about our response. It's about letting ourselves adjust to the change and then loving our perfect bundles around the g-tube and cherishing them while preparing for yet another heart surgery.

What is parenting all about anyway? Is it about having "show children" who grow up smart and beautiful, who become genius', changing the world through inventions, cures and laws?

My humble opinion is that parenting is about acceptance. Loving the child you were given- pushing that child to top their best (not the world's definition of "best"- THEIR best)- enjoying that child for EXACTLY who he/she is.

Yes, I share with you my growing pains- this is my place to talk it out- it's my way of coping. But never for a minute would I blame these pains on imperfection- they are simply me expressing how my expectations have to change in order to accept the perfect in my life.

Having a child with special needs is not always easy- and it doesn't need to be painted over with a glossy front in order to appear perfect and beautiful to this world.

Sometimes true beauty is found in the rawness- the brokenness- the truth. When you delve to the bottom of hardship- you can find yourself in a way that you never could if you sailed along life with happiness coming easily to you.

Who's to say how many chromosomes perfection requires? Who decides what is beautiful? Who has dibs on "smart" and "cool" being the most important thing you want for your child? Who says that "different" children are really the "different" ones- perhaps they're the only ones that are normal.

It's all about perspective.

Really, all any child wants is love- and to be equipped for the life in front of them. Each child will require different equipment for a successful life. EACH child- diagnosis or not. Why do we allow a diagnosis to be so paralyzing?

Yes, if there is a diagnosis, find out what it is so that you can tap into the resources available to you to help your child become the best version of himself/herself. You are not alone in what you're going through. But in no way allow that diagnosis to take away your joy as a parent because at the end of the day?

There is a divine reason why. And even if we don't know what it is now- it's only up to us to take it one day at a time, reveling in the happiness that is right in front of us- one perfect smile at a time.

Note: I am NOT announcing the onesie giveaway winner today. Because of some slight miscommunication, the winner will be announced next week instead. What does this mean to you? More time to enter. (-: Thanks for putting up with my first experience as giveaway host!


Tuesday, April 10, 2012

From Carter

(Apparently I am a big fat liar. More pictures today. lol)

Dear Addison,

I am your brother, and I love you very much. But I think it's time you wake up and notice the walker whizzing by you.

For the past seven months you have
stolen my bottle;
played with toys just outside my reach;
pushed me over;
bossed me around;
 and aggressively threatened me.
But about a week ago, something happened that I think you haven't fully processed yet (because your actions haven't really changed).

Yes, I figured out what these chunky things called legs are for, and I know how to use them.

I'm sensing that you want to lie around and mope because it's harder for you to walk with your new braces on, but be warned.

I WILL run you over- it's only fair.
(Yes, I totally crashed your physical therapy appointment today)
Love,
Carter

p.s. I dare you to catch me while in flight. I. dare. you.
p.s.s. Mommy says that the onesie winner will be announced tomorrow, so get your last entries in....whatever that means...

Note: I have been working on installing threaded comments here on EANFE, but in the meantime, I apologize for my slow response time to your very sweet and wonderful comments. I am working on it. I promise. (-:

Saturday, April 7, 2012

Easter Pictures

Sometimes when I get in a funk, I fall back on pictures of my kids to say the things that are heavy on my heart but somehow won't come to me through words. There's something about staring at the adorable cuteness of your kids on your computer screen long after they are peacefully sleeping for the night that restores your sense of purpose and love for life.

Well, this week I've been struggling a bit to find my footing, so I might have gone definitely went overboard on taking pictures of this kids for Easter. (no comment from the hubs here, please)

Anyway, I left the other 300 in a file on my desktop and decided to share my favorites with you here. (I promise to give my trigger happy camera fingers a rest for a while and feel free to roll your eyes at me for being one of "those moms"-whatever that may mean)

Have a very blessed and happy Easter!

(yes, as I confessed on facebook, as I pretended to go completely insane, they smiled more and more. Apparently "crazy mommy" is much more hilarious than "cheesy mommy". go figure.)
(If you're wondering why she always looks like she has a touch of dried yogurt in her hair it's because she is now responsible to feed it to herself each morning. And yes, a good bit of it ends up in her hair.)


the end
(for now...crazy mommy can come back at ANY time...unfortunately)



Friday, April 6, 2012

Brace Yourself

I have a confession to make. Just because I have accepted my daughter's diagnosis doesn't mean that I'm always happy about some of those "extras" that come along with it.

This week we had four therapy appointments and two doctors appointments. Still not what upsets me. I guess I'm used to the busyness of Addison's schedule. (and explains why even though I'm a stay at home mom, I still don't have a lot of time for "extras" myself)

The topic bothering me today has to do with one of those appointments. In my mind, Addison is a little girl- like any other little girl. I like to put pretty bows in her hair, buy her gorgeous outfits, paint her toenails and let her put a swipe of makeup on her face to mimic what I'm doing and be "just like mommy".

But every once in a while, something happens to remind me that she does indeed need extra help and assistance- things that will hopefully give her a better future, but aren't exactly found on the racks of high baby fashion.

For example- the infamous glasses incident of 2011. (BTW, in case you're totally judging me because she is NEVER pictured here with her glasses on....she flat out REFUSES to wear them. I have tried everything. EVERYTHING. I have four therapists and a PCA who have helped me along with the best pediatric opthamologist team in the state. Our conclusion? She will wear them when her world expands beyond what she can hold in her hand)

But this week's drama? Getting Addison braces for her feet/ankles.
When I posted on facebook that we were going to get molded for them a few weeks ago, I confessed that it made me feel sad.

I couldn't figure out why. I love her. I want the best for her. But I didn't want her to have to deal with one more thing that might set her apart from her peers as different.

It all started when we took her skiing and then she decided to start walking after wearing the boots for an extended period of time.

Our PT (which Addison has had since she was 6 weeks old and we LOVE) made us an appointment to go see an orthotics specialist to see why the extra support was helping her so much.

After a rather intense examination (side note: apparently the doctory of feet is a very intense subject. Who knew?) it was determined that her feet's current walking motions will lead to deformity, bunions and a lot of pain in her future. Translation? Awkward gait, no running, probably no ballet or other such sports.

But with almost constant wearing of her SMO braces over the next three years, her feet COULD grow correctly and allow a much more pain free future for her.
SMO (Supra-Malleolar Orthosis)

She's starting with these braces and then going back in for new ones that separate her big toe from her other toes which means she'll have to wear special socks under them. (Seriously, I can't even keep regular socks together. Now I have to keep up with medically prescribed socks? The pressure is too great)
You'll notice that Addison ALLOWED the glasses as a necklace accessory for these pictures. ha.
We've decided that these braces can be worn with a lot of style and attitude.
They are what you make of them.
For us they hopefully will avoid a lot of problems for Addison's feet in the future
and will maybe push her over the edge into "full time walker" (she is SO close already).

So we will wear them and accessorize them with pride.

I'm sure the famous "Addison attitude" won't get in the way. ahem.
BUT she will not be wearing them with her Easter dress. Don't judge. We're still breaking them in and wearing a fancy dress is a good a time as any to give them a break. (-:

So yeah...Addison fashion now includes braces. But while sad at first, I'm now happy that we were able to catch the problem in time. Poor girl has already been through enough. A pain-free future for her feet is worth a little style inconvenience for now. Totally. (And this might just be mommy pride speaking, but she is completely rockin' out her new look!)