Thursday, December 19, 2013

12 Days of Christmas (kindof)

The 12 Days of Christmas - Watkins style

Except we're only doing 8 since I can't come up with 4 more and there's 8 days until Christmas anyways.
Orrrr I just realized there's actually 6.

Just.... whatever.

The 8 Days of Christmas

On the 8th day of Christmas my firstborn had to have..
8 hours in the ER 
7 invasive tests run
6 packs of cookies
5 different doctors
4 hours of sleep
3 painful blood draws
2 different xrays
1 throat CAT scan
a near lumbar puncture
and a big shot in the butt...

HO HO HO! MERRY CHRISTMAS!

Friday, December 6, 2013

Weekend of Thankfulness

Yeah yeah.. Thanksgiving's over and done with and everyone's already moved on to Christmas. I know. But after my Halloween post, did you really think I would get a Thanksgiving one out in a timely manner? You can probably expect me to write something about Christmas sometime next summer.. 

Last week was Thanksgiving. A time to reflect on being.. well, thankful. 

I AM THANKFUL FOR..

my little turkey


and the fact that last year's Thanksgiving shirt got another wearing. 
(one positive aspect of a slow growing child..)

For friends who share their (free) Husker tickets with us.
Even when they lose. To Iowa. *Sigh...

For family traditions,
(making Christmas bread)

and our small town community Santa so we don't have to beat the crowds at the mall..
*Note the missing picture of Ella with Santa. Again. Yeah.. Santa is scary.


For chocolate

lots of yummy food for a good tonsillectomy recovery,

and for Movember. Yes.. perhaps especially for Movember. ( - :
 And for everyone who is curious which boys were which on the Triplets post, the order was Hudson, Nolan, Charlie. I can't believe how many of you guessed right! You just might know what my kids look like better than I do!

Tuesday, November 26, 2013

Triplets??

It's becoming obvious that my husband and I only have one type of gene combination for boys.
(And possibly only one baby towel as well?)

Any guesses on who's who? 



Thursday, November 21, 2013

There's Just Something About Her

So I know I've written before how there's just something about Ella. Something that others are innately drawn to. Something that causes strangers to turn their heads in our direction. Something that causes even the most stone-set hearts to reach out and smile at her. Some kind of invisible force that draws others to her. I'm used to going out in public with my kids. Used to kind strangers oohing and aahing over my adorable (no bias here..) babies, admiring my tow-headed little surfer boy 'twins'. But the attention my other kids get pales in comparison to the attention Ella attracts. There's just something so naturally sweet about her. Now I'm not saying that Ella is sweet all the time or walks around with a permanent halo over her head all day. No no no.. She can throw a 2-year old tantrum with the best of them. But there's something simplistically sweet and pure about her nature that others are just drawn to.

The other day I was running some errands in town. It was lunchtime and I knew if I tried to drive home Ella would be asleep within a few minutes and would miss lunch. Her doctors and I aren't as concerned about her weight as we used to be (ever since we hit that big 2-0 lb mark) but I still panic a little at the thought of her missing an all important meal. So McDonalds it was. We walked in and she wandered around a little while I perused the Dollar Menu, causing the typical smiles from workers and customers. We ordered our food, found a booth and sat down.

While we're at a restaurant, Ella and I have opportunity to come in contact with many people. Many MANY people. Ella is what some would call a slooooow eater. The girl averages around 20 minutes per McNugget. On the rare occasion we go to a restaurant, we usually end up spending a good portion of our day there (upside: free caffeinated refills). After a friendly conversation with an older couple who were obviously smitten with Ella ended in the man giving her a dollar (for me to buy her a candy bar with later.. obviously.) a booth was open near us.

Now I'm not sure if this is weird or not.. but I have this thing. Maybe they occurred at a very impressionable age for me (I was 17), but ever since the 9/11 attacks on the World Trade Center I've been a little paranoid about going out in public. Not like I-can't-function-in-daily-life-and-never-leave-my-house-because-I'm-too anxious-paranoid. Just slightly paranoid. More like watch-people-who-look-scary-a-little-more-closely-and-plan-where-I-would-run-and-hide-my-children-if-they-suddenly-started-shooting. Is that weird? If so, then I'm obviously kidding about all this.

Anyways, it wasn't long into our meal that a couple of these shady looking characters walked in and immediately blipped on my radar. And I mean 'shady' as in: men, baggy pants, long hair, unshaven. Stereotypical? Yes. Hey.. I know. Anyways, the little part inside me that I'm totally kidding about if no one else experiences this, gave off it's signal that there was possible McDouble Danger. I discreetly looked to the booths, the nearest door, planned my escape strategy should I need it, and silently analyzed in particular, the man with his goatee in a braid, which you know.. isn't all bad, but when you add up the baggy pants, baseball cap, and shifty eyes.. well you know. And all the while what was my sweet Ella doing? Toddling over to their table, smiling sweetly at them and befriending these 'scary-looking' (to me) men. I watched as they looked at her, shifted uncomfortably in their seats, glanced at me, then focused again on the pig tailed little girl, staring at them so intently, waiting, and slowly smiled down at her. I saw her hungry eyes (remember 1 hour = only 3 McNuggets) settle on one of the man's yet-untouched chocolate shake (okay.. I should have known terrorists probably wouldn't order chocolate shakes with whipped cream and a cherry on top) and I honestly thought for a moment that he was going to hand it over for her to enjoy. It was as if her taunting eyes were saying to him "Hey, the last guy who sat here forked out a dollar for a candy bar. I bet you can do better." I sat astonished at the way these two grizzled men, who I had already tagged as potential mass murderers, slowly softened around the edges and showed a side I never would have seen if not for my sweet innocent Ella girl. I would have sat at my own little tale, surviving in my own little world, believing my own little judgmental stereotypes, and never given them the chance to prove that I was wrong.

And it wasn't just these two men that Ella connected us with. It was the older couple behind us who opened up a friendly discussion about their grandchildren (his granddaughter had shown up to their house with a key she had painted gold (or was it pink? the wife asked) and told him, "Grandpa.. now you have the key to my heart.") and the McRib sandwich (Why don't they offer it all the time??). It was the middle aged couple a few booths over who couldn't stop staring and smiling at us the entire time we were there and commented how sweet my kids were on their way out. It was the elderly man who told me "You better watch out when she's 18" after recieving one of Ella's famous impenetrable smiles. It was the harried-looking business man who slowed down a little to smile at Ella while we walked through the door. It was the young worker on her way past us to deliver drive through meals who paused to smile and talk to Ella every time she walked past.

Ella has a way of connecting people. Of bringing out the best in everyone around her and bringing us together. Of opening the lines of communication between people. Too often we go about our own individual, busy lives and rarely have the opportunity to connect with others. Too often we are surrounded by people, yet feel isolated and alone in our own worlds. Too often we sit in a McDonalds for hours on end and instead of interacting and getting to know the people around us, we isolate ourselves in our own booths, in our own worlds, and tag complete strangers as potential murder suspects (or maybe I'm the only one who does that..). But because of Ella and her simplistically sweet nature, I am finding myself learning more about others and getting to know people who before would have remained forever unknown. I find myself connecting with others. And realizing just how alike we really are. If not for Ella I would have sat through the rest of our meal (which could have been hours..), feeling slight fear of these two men who sat mere feet away instead of exchanging smiles and 'have a nice day' before they got up to leave. Because of Ella I have these opportunities more and more.

When Ella was first diagnosed with CdLS I worried that whenever we would go out in public people would know there was something different about her. I worried people would stare. I worried people wouldn't be able to take their eyes off of her. Turns out I was right.. There's just something about her.

Friday, November 15, 2013

Halloween: Better Late Than Never

Happy.. uh... Halloween?

From: TEAM WATKINS


Yes.. I realize Halloween was like.. over 2 weeks ago. 
And yes, I'm just getting around to posting our Halloween pictures.
But unless you're willing to sleep a night in my bed, don't judge.
(Wait.. that was supposed to be a play on "Unless you're willing to walk a day in my shoes," 
but I don't think that came out quite right..)
What I'm getting at is nights around here have been a little rough lately.
And days too actually now that I think about it..
A prime example of the other night:

All day long: Ella and Hudson fuss and whine and both need to be sitting on my lap at ALL times.
Boys come home from school: Fight and wrestle and tackle and bite and scratch each other until bedtime.
9:00- Kids are finally all asleep.
9:01- Ella wakes up crying. JJ goes up to rock her while I sit with Hudson on the couch. 
10:00- Child #1 wakes up with horrible sounding cough. Husband administers cough drop.
11:00- Ella wakes up crying again.
Midnight- Exasperated husband brings uncontrollably fussy Ella downstairs for me to deal with. 
12:01- Husband sits Ella on my lap. She smiles sweetly at me.
12:02- Husband realizes he still needs to lock up the animals for the night (morning?). He goes outside. It's snowing.
12:10- Husband brings Child #4 back upstairs with him.
Midnight-1:30- Ella and I play happily in the living room (well, one of us was happy about it)
1:30- Ella climbs the stairs and wanders around upstairs while I doze on the couch.
1:31- Follow Ella upstairs to rock her. 
1:32- Rock with Ella
1:45- Hear Child #2 get up.
1:46- Continue rocking
1:50- Hear Child #4 wake up- starting to get hungry.
2:00- Husband switches shifts and takes over rocking with Ella.
2:01- Change Child #2's sheets. 
2:02- Listen as Child #4's hungry pleads get more serious.
2:05- Lay with Child #2 until he is almost asleep.
2:10- Husband brings desperately starving Child #4 to me.
2:11- Go back to bedroom to feed Child. Husband and Ella are in the recliner.
2:12-Take Child to bed with me to feed him.
2:20- Husband gives up rocking and brings Ella to our bed as well.
2:21- Ella proceeds to perform her version of STOMP between our covers.
3:00- All are finally almost asleep.
3:01- Child #2 comes back into room. Announces he's hungry.
3:02- Husband tells Child to go downstairs and get a banana. Child leaves.
3:03- Husband looks at me. I look at husband. We laugh. Purely because the only remaining option is to cry..
3:05- Child comes back and eats banana in our room.
3:07- Husband tucks child back into bed.
3:20- Toe starts throbbing uncontrollable for unknown reason.
3:30- Drifting off to sleep again.
3:30- Child #4 wake up. Hungry again.
4:00-6:00- We all sleep like kings. Kindof.
  
And this night came sandwiched between multiple other nights of our lovely children sharing the stomach flu with each other. 
And us.
And an entire week of me not leaving my spot on the couch holding 2 sick whiney babies, getting up only in very very extreme cases of having to pee..
So, yes. I've been a little tired lately. 
And unmotivated. 
And busy washing wet sheets and pukey clothes. 
PLUS, I really really wanted to take more Halloween pictures. Really cool ones. Like, the older boys lined up looking like they're going to snap the football (Hudson) laying between them. And them tackling each other and me (the ref) throwing a flag. And JJ doing some sort of funny coach stance and Ella cheering and it was going to be really awesome but since that never got done let's just all take a minute to close our eyes and pretend there's really the most amazing Pinterest-worthy Halloween photos ever posted here and you can all ooh and aah and feel free to leave comments about how much you LOVE these pictures and I will reply that they were really so effortless to take and the kids really just cooperated perfectly and we were all as happy as we look in those pictures. Let's just pretend that happened, okay?

Wasn't that fun? 
Okay.. now I feel like I need to compensate for that pathetic plea to humor me.
Ummm.. I made a really cute ghost cake/cupcakes for Charlie's class. See?

There, I feel better now.             

Wednesday, October 30, 2013

When Little Things Add Up

You might have seen THIS on Facebook yesterday.
In case you're wondering, yes that is my tiny little unbalanced daughter whose legs are so short they can barely reach the next step and whose hands can hardly even reach the railing, walking frontwards down the stairs all by herself, and standing up, holding on with one hand. The heart attack didn't occur when I first realized this is what she has been practicing every day while I feed Hudson on the couch and she plays around the corner on the stairs. No, the heart attack occurred later that day when I saw her balancing at the very very tip top of the stairs, walking across the top one, in order to get to the railing. Oh my.. One little misstep and....  *shudders at the thought. (This does make a pretty good case though and another excuse why, after 4 1/2 years of living here, we still have yet to stain and finish the stairs. Polyurethaned steps would be much too slippery in footie pajamas, don't you think??)

I wonder how long the sneaky little bean has been doing this?? She does play on the stairs quite a bit while I'm feeding Hudson, but I assumed she was just crawling up and down, or harmlessly sitting on the bottom step, swinging her legs, like I'd seen her doing before. Just the other day I was walking down the stairs with her, holding her hand, and thinking how much she was relying on me to balance herself and how far away we were from her being able to do this independently.. HA! Little did I know she's probably been doing it for weeks behind my back. 

Anyways.. this got me thinking. Being the parent of a developmentally delayed child can be frustrating. Milestones can be few and far between. It can be difficult watching other typically developing kids race ahead of where your child is and wonder how long it will take for yours to get there, or if they ever will. It's easy to get lost in the day to day care of your child where hard, diligent work is put in, yet progress can feel slow and tedious. 

But then something big happens. Something unexpected. Something as terrifying as your baby standing at the top of the stairs, walking down them all by themselves, and it causes you to stop and think, "How did we get here??"

While I don't dwell on all the things Ella is not doing nearly as much as I used to, I realized I also haven't thought much lately in detail about all the amazing things she has been doing. I decided to sit down and think back a few months of what life was like at the beginning of the summer and compare it to now. This is what I came up with.

First of all, a few months ago, at the beginning of the summer Ella wasn't even walking. I can't decide if it's more unbelievable that walking is a fairly recent development for her, or that I have become so spoiled and ungrateful to let myself forget how huge this was for her. I went back and watched the video of her walking for the first time. *tears. I might have gotten so caught up in life that I hadn't realized how not-so-long-ago this was, but I will never ever forget that day or how I felt. 

Also, at the beginning of the summer Ella was still very very timid about many things. She refused to sit on a little hot wheels tricycle-screamed bloody murder, was extremely upset if I tried to set her on one. Now?

Her brothers are the ones that are upset that she won't leave them alone to derby-bike.

Same thing with the Cozy Coupe car. Freaked. Out. I think it's safe to say she's gotten over that. 

And the Menards cart too.

Oh, and that swing that used to be so terrifying? Not so much anymore. She even climbs the 6 foot ladder to the top of our slide all by herself to fearlessly go down. (No pics there since I'm always on alert to spare her from impeding concussion.)

There were some other things I was worried about doing with her this summer, not knowing how she would react to them.
Camping? Check.

Firecrackers? She threw those snaps like a boss.

Demolition Derby? I was certain one of us would be walking around the fairgrounds with her, far away from the noise and action. If this picture is any indication of how she reacted, I was pretty wrong.

When I think about it, it really wasn't that long ago we were dealing with an NG tube. 
Now? 

Well, it's safe to say Ella enjoyed this summer's bounty.

Ella has also gotten so good at climbing.

on everything

Here is that little horse she loves to ride.
Gee, this picture would have been really great to find for that other post that was actually about this horse. I might go switch that..

And while Ella still doesn't care for her own bath time, she certainly has no hesitation in getting soaking wet from her brother' bath.

Another big accomplishment for Ella has to do with her medications. She is officially off of all reflux medicines! This is HUGE for a CdLS-er since reflux is such a common problem. I would like to tell you that weaning her off her Prevacid was a very meticulous and involved process, requiring a scientifically mathematical equation of proper dosage restrictions so as not to overwhelm her system.. but in all honestly Ella was actually playing with the pill bottle one day last spring and hid it from me and by the time we dug out from a late snow storm a few days later and got to town, I realized she hadn't had it for a few days and was doing just fine so I called the doctor and we went with it! We have also cut her Miralax dosage in half and are working on gradually cutting it down even further. 

Ella has grown by leaps and bounds in her stranger anxiety as well. She still won't go to just anyone, but there have been occasions where people not on her VIP list of 4 have been able to pick her up and hold her for brief amounts of time. I have also been able to leave the room without carrying her everywhere with me, even if that means she's alone with people she isn't as familiar with. That is a very big change from a few months ago--one I never want to take for granted!

She tries to say more words and learns new signs every week and is working with pictures to help her communication as well. She decided riding in the stroller isn't so bad after all (immediately after I sold our double stroller since she refused to ride in it.. of course) so going for a walk is finally an option again! She is also starting to realize that her little feet are able to wear hard-soled shoes so our shoe choices have now exponentially increased (exciting since we just inherited about 20 pairs of adorable             shoes.) And just the other day at a doctor's appointment, Ella actually stood on the big girl scale (a whopping 21 pounds!!) instead of sitting and screaming on the baby scale and also stood against the wall to measure height.

And best of all, Ella has become a pretty amazing big sister to this guy. 

I'd say she's pretty proud of herself. 

And so are we. What a difference a few months can make!!

Thursday, October 24, 2013

Week in Review

Discovered mouse in house... disgusted.

Hearing test reveals tubes have fallen out and Nolan can only hear 50% of what we say... exasperated

Notice Charlie's first permanent tooth has grown in... excited!

Realize soon after he will need some serious dental work... depressed, start saving now.

Call every dentist in the tri-state area to have mortifying amount of cavities filled for Charlie and also discuss this new severely out of place tooth, but can't be seen for months... discouraged

Dog kills 2 chickens... P.O.-ed.

Eat peanut butter by the spoonful along with bag of chocolate chips... feel better.

Husband discovers dirty peanut butter spoon and half eaten bag of chocolate chips... feels sheepish.

Plan to attend former high school's last ever Homecoming football game... sad they have to close their doors.

Call credit card companies and other bill places to complain about late charges and interest fees on bills I didn't even receive... irritated.

Find those bills buried in a pile of papers... oops.

Get Ella to sleep, Hudson wakes up. Get Hudson to sleep, Ella wakes up, etc.... tired.


Start to make banana bread and realize husband threw away all bananas the night before... annoyed.


Husband brings home chocolate covered potato chip ice cream... husband is redeemed and I can handle life again.

Tuesday, October 22, 2013

Reminders

I have been sensing something the past few weeks. Little reminders that have popped into my head every so often. Nothing huge. Nothing alarming. Just little thoughts and somewhat dimly lit memories fading in and out.

A pink checkered blanket that I recently pulled out for these cool fall nights.. the same one I once clutched to my chest when I thought I had just held my daughter for the last time.

The sight and sounds of witnessing a helicopter touch ground.. reminding me of when I viewed that from the inside looking out.

A commercial for the CMA's.. which for some reason I vividly remember watching by myself in a corner of our PICU room.

A link posted on Facebook of the funniest auto corrects from 2012.. a list similar to the one I remember sitting up late at night giggling over in 2011. (I'm sure our nurses all wondered what in the world could be so funny to hear late night hysterics coming from a PICU room.)

The fall wreath I hung on our front door.. the same one I made to help pass the time while Ella was on the ventilator, and which I actually left the hospital room for the first time to go buy the fabric for.

Parent/Teacher Conferences that we attended for Charlie's Kindergarten.. the ones I remember missing during Nolan's year of Kindergarten since we were a little busy.. you know.. fighting for our daughter's life.

The signs have been all around me, reminding me of the passing time. It's now been 2 years since Ella was sick. So so sick. Like most memories, in some ways I can remember certain details like it was yesterday, but in other ways it feels like a lifetime ago. (Here's last year's post if you want to be reminded)

I missed the exact date of Ella's 2 year anniversary. But that's okay. I'm finding I don't need to dwell on our past and be continually haunted by those memories. Right now I'm too busy living life. Too busy being thankful. Thankful to be home every night with my family. Thankful to be able to tuck each of our kids into their warm, safe beds. Thankful for the smell of banana bread baking in the oven. For hot coffee and warm blankets. Thankful for a little girl who is blossoming before my very eyes, doing amazing things and surprising us every day.

Just the other night as I sat down on the couch after a long day I looked over and saw Ella sitting on her little rocking horse, slowly rocking. Back.. and forth. Back.. and forth. Tears instantly sprang to my eyes. I had never seen her get on it by herself before, never seen her rock without holding my hand. And as I watched her I became lost in the moment, in the methodical rocking of back.. and forth. And I was amazed. Amazed at how far she has come. Amazed at how close we came to losing her. Amazed at how different our lives would be without her.

Two years. I am amazed. And so very thankful.

Thursday, October 10, 2013

Coming soon to a Pediatrician near you

I have a confession. 

I've been keeping a secret from you all. 

Ella is about to achieve world wide fame and recognition.

Ok, maybe that's an exaggeration. But her face has been appearing on Pediatrician's desks all across the country!

Let me explain.. Every year the CdLS Foundation does a targeted campaign in an effort to bring awareness to this rare and often un- or mis-diagnosed symdrone. A few months ago the Foundation contacted me about the idea of creating a 6x9 inch postcard to send to pediatricians and medical professionals attending the American Academy of Pediatrics Conference in Orlando, FL in October, with hopes of inspiring them to stop by their booth and learn more and get a diagnostic checklist to help other families with a child with CdLS.

And this is how it turned out!

front

back
We are super excited about this postcard because 
a.) well.. it's adorable. and 
b.) we really hope it brings awareness and helps other families like ours get the help and support they need!

I hope your Pediatrician is awesome enough to get one of these! :)

Tuesday, October 1, 2013

Fundraising Update

First of all, THANK YOU so much for all the support from my last post about fundraising for 2014 CdLS Conference. Thank you for all the ideas, support, and offers of help! I was humbly overwhelmed by everyone's response. For the first time, this actually feels real instead of a distant dream. Like, maybe we really can make it to California next summer. We'll see..

For now, my kitchen and I are becoming pretty tight BFF's, preparing for a
this coming Saturday. 
(Okay.. I might have had a Sunday evening fling with some brown paper bags and leftover scrapbook paper too..)

Some other ideas for fundraising I'm entertaining is a possible dinner or breakfast of sorts this winter, along with either a raffle or silent auction. And this spring, a potential 5K. This is the idea I'm most excited about. Maybe because it's the farthest away and I don't have to think much about planning it quite yet. Or maybe it's because I think if I can sit on my butt and plan a 5K I can pretend I'm actually in the same club as my athletic friends who actually run 5K's (and longer).. Either way it sounds like fun and something we could even make into an annual event to help raise money and awareness for the CdLS Foundation. 

Anyways, if anyone has any Bake Sale expertise or ideas/opinions (ie: what would you pay for a loaf of banana  bread? or a dozen cookies? I have absolutely no idea what to charge..) I would love to hear them. Judging by how things go on Saturday, at this time next week we'll either be one step closer to California or 300 pounds heavier from consuming the leftovers.. I'll let you know. :)

Thursday, September 26, 2013

California or Bust

Last year JJ, Ella and I were lucky enough to be able to attend the National CdLS Conference in Chicago. When I first heard about the Conference I was deep in the pits of my grief/denial/wanting nothing to do with those 4 little letters. I had absolutely no interest in attending. I did not want to admit Ella had this syndrome, and definitely didn't want to meet anyone else who did. But as the months went by and the grief lessened I began to ease out of my shell and talk to other CdLS moms. They encouraged me and inspired me and I realized what an invaluable opportunity attending Conference would be. Even if I didn't want to admit it, even if I still didn't want to be in this club I never asked to join, even if I didn't even get along with any of the other moms in person, I knew it would be good for Ella. It would be good to learn more about what to expect in her future, what things to look out for, how we as parents can provide her with the best life possible. And the opportunity to speak with doctors who had not only heard of CdLS (which are few and far between where we live) but they were experts on it? Totally priceless.

We signed up. We decided not to take the boys with us because we wanted to really be able to focus on Ella and get the most out of the Conference for her, without being distracted by two rambunctious little devils darling boys. We decided to drive since it would be cheaper and it's not that far. (Well.. when you drive at night and everyone's sleeping (myself included) it's not that far. When you drive during the day with a grumpy baby who is not happy about sitting in her car seat for 9 hours and no one is sleeping.. it turns into really far.)

Anyways.. we learned so much at Conference and were able to meet so many wonderful new friends. The opportunity to meet other children with CdLS (who at that time the closest family we knew of lived a hundred mile away) was amazing and learning from other parents who have lived through the same struggles we are facing, who have navigated these waters before, and who just 'get it'.. it's incredible. I left Chicago knowing that even though the city was Illinoing (hee hee--still funny over a year later..) I definitely wanted to return to another Conference in 2 years.

Which is coming up next summer. And which I am totally excited about. And which we would LOVE to bring our boys for them to be able to meet other people with CdLS besides their sister, and be able to make friends with other siblings and to learn and experience people of all differences on a whole new level. And which we would love to be able to talk with experts about Ella again now that she is so much older and changed and facing different obstacles from the last time. And which would be awesome to see our CdLS friends from all over the country that we would otherwise have no opportunity to see. And which this time is located in Costa Mesa, California which is totally awesome.. except which between airline tickets for SIX, hotel rooms, food, transportation.. is going to cost us about a billion dollars.. Or at least it feels like it.

At the beginning of this spring I had such high hopes to start fundraising to help us out. I planned on starting small with a Bake Sale, but couldn't figure out when/where to do it at. Plus, it was a ridiculously cold and rainy spring that there just never felt like there was a good time. Then the summer came and went and I  was so exhausted and unmotivated from being 9 months pregnant that nothing got done. And now I am so busy with 4 kids and a newborn that most days I can barely find time to make the bed. (Okay in all honestly.. I don't try that hard to make the bed, but still.) And by now I've just gotten so gosh darn good at making excuses that I'm wondering how anything will ever happen..

So here's where I stand. I want to do something to help raise money to attend the 2014 Conference. And I'm not scared of work. I'm totally willing to do the hard leg work of whatever it is I decide to do. But the thought of planning/coordinating any kind of event sends a rush of panic through my veins. Planning/coordinating/being in charge of something is not my God given talent. Nor is it a learned talent. In fact, it has NO place in my little world of talents at all.

I think I could handle a bake sale, but where? Just outside a store? Or at an event? It seems like most events already are raising money for something so I'm sure they wouldn't want me butting in. I know I need to get going on this because winter will be setting in soon in these parts, but I am feeling a little anxious about having to take charge and make a decision. I've thought about hosting some kind of dinner or something and I've had people offer to donate items for a raffle, but then there's that paralyzing fear of planning something. On my own. Where do you even start with something big like this? How in the world would I know what to do, how much food to make, where to hold it. See? My heart is racing and my blood pressure is through the roof just thinking about it!

And then there's the fact that asking people for money to help me go to California seems a little ludicrous and makes me more than a little uncomfortable. I mean.. why should people give us money? There's plenty of other amazing organizations out there that are asking for funds. There's sick kids and people battling cancer with unpaid medical bills. There's food programs for hungry people and homes for unwanted children. Why would someone want to help me? (See what a horrible saleswoman I am? I'm already talking people out of helping us before anyone's even signed up to help.. pathetic)

So locals.. if I were to do a bake sale, does anyone have any good recommendations on where to have it at? What kinds of things go over well? CdLS parents-what fundraising ideas have worked for you? Ideas? Everyone else-do you have a talent for planning/coordinating and want to help me plan/coordinate something? Doctors-can I get a dose of one of those anti-anxiety meds to help me make it through this?

Or does anyone just want to shut me up and donate a couple billion dollars to the cause?? Kidding! I would settle for a couple thousand.. ( - :

Tuesday, September 24, 2013

Comparing

During the past few years I've wasted a lot of time comparing Ella. I've spent countless hours agonizing over other children her age and willing her to be like them. To look like them, to act like them, to hurry and catch up developmentally like them. I would go out in public and stare in shock at what other children her age looked like, how they acted, what they could do, and sadly.. what Ella couldn't. Consequently, I would find myself making a lot of excuses. Well, she was born 3 weeks early. Of course that's why she's so small. or She's spent so much of her life in the hospital, intubated and sedated. Wouldn't you be behind developmentally too? or She has such similar features to our other children. There's no way she has some kind of syndrome. 

When I would observe other children Ella's age and notice the differences in how Ella was not like them, I usually would have one of two responses. The first- overwhelming sadness. We would be at the pool and I would look mournfully at the adorable little pig tailed girl giggling and splashing in the water, running in circles and squealing with delight, while Ella clung tightly to my chest, terrified of even dipping her toe in the foreign substance. I would have to fight back the tears as I held her tight and rocked back and worth, whispering "It's all right.. it's all right," over and over again. Even though in my heart it wasn't all right at all. I would be at the park and watch a 2 year old excitedly race up and down the slide, then run to her mommy and chatter nonstop about her adventures, while I held Ella's hands and slowly, silently wandered around the perimeter of the playground. I would feel depressed, defeated. Like we could never enjoy life the way these other children were, without any of the limits holding them back like they did for my girl.

My other reaction would be denial. I would pull out an outfit for her age, say 12 months when she was a year old. It would be HUGE! No way would a typical 12 month old wear that.. No way.. Was it made for baby sumo wrestlers on some kind of hyped up children's steroid or what? There's no way a "normal" 12 month old could possibly fit into that outfit! It must just be that brand.. But then I would pull out another. And another. And they all appeared to be made for the man-children of Paul Bunyon. What gives? Or I would witness a another child so far ahead of Ella in all areas of development, and I would think, "Whoa.. now that kid is abnormally advanced. Some kind of miniature Albert Einstein for sure. Typical 2 year olds don't do that.. do they?"

I would even compare Ella to other children within our CdLS family. Oh, I'm sure you're not supposed to actually admit to doing this since we're all in this together, but I would. I would look at kids older than her and wonder which one she would be like in a few years. I would watch others her age and study to see if they were doing things she couldn't. I wasn't trying to be, or thinking that we were better than anyone else, I just wanted to see where she was at. How she compared..

Over the past year though, something has started to change. Those differences that used to haunt me every time I left my home? I don't notice them quite so often. I see kids Ella's age all the time. Whether it be a friend's child, a random stranger at the store, or someone on Facebook. I know in my head that they're almost the same age as my child, but somehow it doesn't affect me anymore. It doesn't make me sad. And I don't make excuses for why she is the way she is. I don't compare them. Oh, of course every once in awhile I'll be caught of guard and for a moment my mind will wander to the what if's. "Wow.. so that's what life would be like without CdLS." But for the most part I don't notice. Don't care. Something magical has happened. Even though Ella is not the world's typical "normal", Ella has become my new normal. I actually have no idea what a typical child her age "should" be doing or how big she "should" be or what size clothes or shoes she "should" be wearing. I don't really keep track. I feel no need to. I've stopped comparing my child to others and started to judge how well she is doing by her standards, not others. Ella is doing good for Ella. Even better. Ella is doing awesome for Ella.

And then Hudson was born. After JJ finally moved out of the way and I could actually see the baby I had just given birth to, I realized that our doctor really wasn't going to waltz in and diagnose him with another rare genetic disorder. And I felt fears start to creep in. Now that I had a typical baby, what did that mean for Ella? Would I suddenly see first hand what a typical child can do, is supposed to do, and be reminded on a ever present daily basis of how she is different? Would I compare them and their stages of development? Would it be painful to watch Hudson naturally develop in areas that take so much more work for Ella? Would I feel resentment toward him for living life so easily when it was so hard for her? Would I love her more because I had to fight harder for her? Or would I bond more closely with him because I didn't have to muddle my way through the intense emotions of grief while caring for a newborn? Would I feel more frustrated with Ella as I realized what she 'should' be doing instead of being content with the stage she is in? How would I feel as Hudson, even though he is 2 1/2 years younger, eventually passed Ella up both physically and developmentally?

Hudson is now 7 weeks old. At his one month appointment he had gained over 3 pounds. It took Ella twice as long to gain that much weight. At one month Hudson already weighed close to 12 pounds.  How long did it take Ella to reach 12 pounds? Six months. Hudson is cruising up the ranks of diaper sizes at an astonishing speed. Ella has been stuck in the same size for years. At Hudson's age, Ella had already spent half of her life in the hospital, had an exciting ambulance and emergency middle-of-the-night airplane ride, and was formally acquainted with an entire team of medical professionals. Hudson has barely seen the inside of our family clinic.

Yes, it's no surprise that Ella and Hudson are different. They look different, act different, and are developing differently. But I see now that I had nothing to fear. My love for all my children is equally intense, yet equally differing as well. It makes no difference to me if Hudson walks at 10 months while it took Ella almost 29 months. Or if he catches up to her in size and effortlessly reaches her hard-earned 20 pound mark in a fifth of the time it took her. It doesn't mater when he talks, what he looks like, or what his differing talents and characteristics are. There just is no comparing Ella to Hudson. Or Ella to Nolan. Or Nolan to Charlie. Or Charlie to Hudson. Or any child to any child. Every child is so differently and uniquely created with their own individual sets of strengths and weaknesses-every single one-that there just is no comparing. And why would we want to compare our children to some kind of cookie-cutter mold of who they "should" be. Albert Einstein is quoted as saying "Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid."

I feel so much more appreciation for life since I am not wasting my energy comparing my child to others. I feel so much more freedom in the ability to love my children for who they are instead of trying to fit them into some mold of what they "should" be like that they will just never fit into. And now when I hold Ella tight, rocking back and forth whispering "It's all right.. it's all right," over and over again, I really know deep in my heart that it's true. It really is all right.

Thursday, September 19, 2013

Should I have prayed to deliver a child with special needs?


I think I make it no secret that when Ella was born with Cornelia de Lange Syndrome I was pretty devastated. Okay, completely devastated. There was an indescribable loss of so many hopes and dreams and plans for our future. I mourned the girl who I thought she was, that she would never be. I grieved the daughter I would never have, the sister my boys would never know, and the 'normal' life I thought we were entitled to. I knew there would be many unknowns in our future. I knew a lot of sacrifices were sure to accompany them. And I knew our lives had just changed forever.

I've always wanted a big family. Always dreamed of having at least four kids. A household full of laughter and love, bustling with energy, imperfectly knit together in a beautiful quilt called family. With two young boys and baby #3 on the way our lives were a wonderful mix of chaos and contentedness. And then Ella was born. And we learned about CdLS. And along with so many dreams I had for my daughter that were being ripped away one by one, I wondered if I was going to have to give up one more of my own biggest dreams as well.. my dream of having another child. At the beginning of our journey with Ella we didn't know what her syndrome was, just that 'something might be going on.' And we had so many fears, so many questions. "How did this happen? What caused it? Was it genetic? Passed on from one of us? If we have another child is there a chance they'll have it too? What would Ella's behavior and needs be? Would we be able to emotionally/financially handle another child?" And after Ella spent 2 whole months of her first year of life in the hospital, my fears did nothing but increase. "Will she be medically fragile her whole life? Will we be continually in and out of hospitals, specialists, and therapies? How could I possibly care for her in the hospital with an infant tagging along? Would it even be fair to bring another child into a family where so much care was being devoted to one particular family member?" 

As the months went by and Ella grew it became obvious to me that yes, she was developmentally delayed and had some special needs. Of course for any family in this situation the decision to have another child is highly personal, but for me giving up having more children just because of the minor inconvenience of a rare genetic syndrome in our lives just wasn't something I was very willing to do. Call it stubbornness, call it persistence, call it pure shades-over-my-eyes naivety.. We decided to move along with our plans to grow our family (but not until I was sure Ella was very very close to walking.. I may be crazy, but I'm not that crazy..) 

But even though I knew I wanted more kids, even though I had grown so much in my acceptance of the role of CdLS in our lives, even though I knew I would love another baby no. matter. what. I still had fears. Fears I don't even want to admit. Fears I hate talking about. Fears that something else was going to go 'wrong.' I knew that since CdLS is generally caused by a spontaneous new genetic change our chances of having another child with the syndrome were slim, but still I was worried. More worried than I'd like to admit. 

"What if we have another child with CdLS?" 

I hate that I even had that fear. I mean.. I'm the one who wrote the "Healthy Baby" post. I'm the one who writes ranting blogs about accepting people for the perfect way God made them. I'm the one advocating that Ella is just like any other little girl her age and deserves the same treatment. I'm the one who loves my daughter to the moon and back and wouldn't change a thing about her. And yet.. I'm the one who was worried that I was going to have another baby like her. I tried to pray about it, but what was I supposed to pray for? That we wouldn't have another child with CdLS? That would be a slap in the face to our precious Ella who was created perfectly just the way she is and in direct opposition to everything I've written about the blessing she is to us. What else could I pray? That we would have another child with CdLS? That really wasn't what I wanted either though. Was it okay to admit that?

My fears were part of the reason I held my breath a little at every ultrasound and waited anxiously every time we tried to find the heartbeat. It was why when immediately after Hudson was born and JJ was standing right in the way of me being able to see him, I didn't ask him to move. I was afraid. Afraid of what I would see. Afraid of what the doctor was going to tell me. I laid there on the operating table, my breathing shallow and my pulse quickening while the nurses cleaned him up and checked him over, and I waited. Waited for them to break the news. To tell me what was wrong. Waited for them to call in the specialists. Waited for the devastating news to be delivered so I could officially move on with my grief and shock. It never came.

I can't explain it really.. Why would I still be worried about such a thing after everything I know now? When I know what a blessing Ella is to our lives. When I know all the ways she's changed us for the better and the joy she brings to us every day. When I know and am so thankful for all the amazing people she's brought into our lives. I'm sure it has something to do with our human nature to want things easy-for ourselves and our children. Of course no one wants to see their child in pain, to watch them suffer, and unfortunately there is often much pain and suffering that goes along with CdLS and special needs in general. From the surgeries to the extensive therapies to the unfortunate pain of rejection from peers. My entire pregnancy, I wasn't quite sure how to pray for our unborn child. I mean.. was it okay to pray for their development? To pray they didn't have CdLS? Or should I be praying for a child with CdLS since I'm the one who writes about the blessings that come from it? Shouldn't I want another one?? I knew I would love our child just the way he was made, but I felt so guilty for not necessarily 'wanting' another child with special needs, for being worried, for feeling the urge to pray for the health of our baby. I felt like I couldn't do it. Couldn't pray for the health of our baby, yet at the same time couldn't not pray for it. I felt like by doing so and allowing myself to hope there was nothing 'wrong' with this baby, I was turning my back on Ella, subliminally saying to her "I don't want another child like you." I couldn't do that.

And then I read somewhere that nobody prays to deliver a child with special needs. Just as nobody prays to die, so that they can be brought back to life with a bolt to the heart. Because that is exactly what happens when you have a child with special needs. A piece of you dies, but your heart is reborn. 


So no, I wasn't necessarily praying to deliver another child with special needs. And that's okay. Because ultimately I knew I loved our child.. all of our children.. no matter what. And that's truly all that matters. 

Friday, September 13, 2013

Thursday, September 5, 2013

I Was Wrong


 It's been one month since this sweet little man joined our "fold" 
(as his debut headline in our local paper called it.. lol). 
A month already! How did that happen??

The past month has been so amazingly much better than I anticipated, proving that having overwhelmingly low expectations really is the key to true happiness. I expecting this transition to be rough. Read: I expected this transition with Ella to be rough/awful/entirely unbearable. I foresaw extreme jealousy, temper tantrums, and many many tears. And sometimes the kids might get upset too... I thought maybe we were totally crazy for attempting this. That I would wonder what in the world we were thinking 9 months ago?? I thought I would be laid up in bed, unable to get up and walk, go out in public, make supper, do anything for months and months and months. (Remember those 52 freezer meals?? Very much so a product of my terrified-ness rather than actual preparedness)

But although I don't like to admit this much.. I was wrong. Very very wrong. I was grocery shopping with Hudson 3 days home from the hospital, hanging out laundry a few days later, and making homemade supper and birthday cake after that. (Not that I'm braging.. maybe just a little.) And I totally underestimated Ella. She has grabbed onto this role of big sister and ran with it. She LOVES baby Hudson. Loves rubbing his soft hair, patting his back to help burp him, bringing me his pacifier, helping me give him a bath, watching as I change his dirty diaper every other minute, and even throws them away for me. She rarely minds when I have to feed him (and he is a slooooow eater), but rather either sits by me on the couch hugging and kissing her own baby doll or wanders off and finds something else to play. She entertains herself when I'm busy and hasn't shown any signs of jealousy. Life has been surprisingly breezy for us the past month.. you know.. as long as we don't have to do anything too crazy. Like leave the house. 
I'll say it again.. I. was. wrong.

I am so proud of so many things..
I am proud of this too quickly growing, strong little guy 

and of Ella's role of doting big sister to him.


 I'm proud of his first fish catch 
(See it dangling above his pacifier there?? Talented 2 week old there)

and of his obvious good taste in sports teams.

But I am most proud..

 that this 42 oz party bag of M&M's that JJ bought for me while I was 
having excruciating neck pain in the hospital has lasted an entire month.. 

See?

Whew! I'm off to go celebrate Hudson's 1 month birthday. 
The same way I've celebrated every other day of his life.. 
M&M Party Bag Style.

Whatever shall I snack on tomorrow??

Thursday, August 22, 2013

Toddler/Newborn Teamwork

They make such a good team already.. ( - :
I think they are already dreaming of the trouble they can will make together..

And the results of the 'Name That Baby'  Contest?
1.Charlie
2.Hudson
3. Nolan
I am incredibly impressed that some of you got it right! 
Since I.. the one who took the pictures, sorted through the pictures, posted the pictures, and birthed these children, looked at them to write the answers down and got it wrong! Oops..