Thursday, February 28, 2013

Social Experiments with Ella

The past few weeks we have been conducting a series of highly intensive, well thought out and planned social experiments with Ella to try to introduce her to the idea of a new baby in the house. We have pulled resources from many factors, studied and analyzed her behaviors, adapted our strategies, and... okay fine. My sister-in-law and good friend coincidentally both had babies within a few days of each other and we were asked to baby-sit a 9 month old baby for someone in a bind yesterday.. It wasn't all that thought out or planned. But, I would have to say, it seems to be working nicely...

Social Experiment #1 - Meeting her new Cousin
When we went to meet her new cousin in the hospital for the first time a few weeks ago.. well.. let's just say Ella was less than thrilled. While I wasn't expecting complete perfection in the first round (come on.. I'm not that hard to please) Ella slightly outdid even my expectations by refusing to even sit next to the new baby, screaming and arching away when I tried to hold them both, reaching and lunging for me when Daddy tried to hold her so I could hold the baby by myself, whining, fussing, throwing a fit, and generally making me sincerely wonder WHAT we were thinking a few months ago when we decided having another baby would be a good idea...

Social Experiment #2 - A Series of Chance Encounters
Throughout the next few weeks we selectively exposed Ella to the new babies in her life with a series of (of course) well planned out encounters. A glimpse at church, a few minutes at MOPS, some time at Grandma's house. And slowly slowly things started to actually get better. It started with a slight wave to the baby when she spotted her across the pew at church. Then a general curiosity to who was holding the baby and where she was at all times. It grew to a touching of the hair and even of the fingertips and eventually mommy has gotten to hold baby and Ella. At the same time. Without screaming. Success!

Social Experiment #3 - A baby in our House
The third and final installment in this series (so far) occurred yesterday. We got a call asking if I would be willing to watch a 9 month old baby for a few hours for someone in a babysitting bind. Of course I hesitantly and nervously, with shaking voice and quivering knees, confidently assured them I would be able to care for their child by replying, "Umm... yeah.. yeah.. sure... uh.. we could.. probably.. umm.. do that..." It wasn't this different baby I was so concerned about. It was the other not-so-baby in the house who insists on still acting like a baby at times and has had issues with me having anything to do with other babies, or children in general, in the past (And by 'issues' I mean screaming-gas-bubble-inducing-tummy-aching-hair-pulling-out intense dramas..). To say that I was terrified of what was going to happen between us was an understatement.. But I held strong and conquered the intense desire to call the parents minutes before arrival, feigning a very sudden onslaught of a serious and extremely contagious disease.. *Pat on the back for me* Right on time the new baby arrived and as I took her in my arms with Ella giving me the sideways stink eye, I monotonously repeated to myself "It's only 4 hours. It's only 4 hours." And then it happened.  Nothing. Seriously.. Ella ate the rest of her meal in her high chair, copied the baby's actions, sat on my lap together, and even leaned over and kissed her when she was done eating. Complete and utter shock on my part. And it got even better. I put the 'babies' on the floor to play, actually in hopes I could get Ella down for a nap, but she took off. She wanted to play with her new friend. For almost 2 HOURS these girls played on the floor together, ripping toys and puzzles apart, crawling after and chasing each other, speaking their own baby language to each other, and in general having a FABULOUS time. I was in awe. I could really see Ella trying to keep up with the other baby, trying harder to do some things she could do that Ella couldn't. The day went exponentially better than I could have ever expected it to and I felt my previous feelings of anxiety/fear/distress/horror/despair slight concern over the arrival of our new baby in 5 short months start to change.. I finally allowed myself to feel wholehearted excitement for what is to come instead of it being laced and overshadowed with fear. Not that I'm not overjoyed about this new little person growing inside me, I just know it's going to be hard. I'm sure there will be many challenging moments in the months to come.. In fact, maybe we've already maxed out in the 'good days with Ella and a baby' department for the.. year. But there is a glimmer of hope and a different kind of anticipation that wasn't there before.

In fact, it almost made me wish we had gotten started on this whole sibling thing a awhile ago...


Saturday, February 23, 2013

Another One of "Those Moments"

That moment when she is cuddled on your lap under the cozy warmth of a heavy blanket while the wind howls and snowflakes swirl just outside your window. Everyone else in the house is asleep and it is only you and her in this special moment. You can feel her begin to get drowsy, her eyelids start to get heavy and she turns her head to snuggle in closer. You admire her perfect features- her beautiful long eyelashes, button nose, and head of hair framing her delicate face and you are overcome with a love so fierce you can't explain it. You lean your head close to hers, breathe in deep the smell of her strawberry shampoo and whisper softly in her ear "I love you Ella." She sleepily looks up at you with the same love in her eyes, and with a slight grin on her face she slowly raises her hand... and signs "potty."

And somehow.. it's all worth it.

True story.

Tuesday, February 19, 2013

That Moment When It's All Worth It

That moment when she leans her head on your shoulder and nestles her little body close to yours and every part of her seems to melt perfectly together with you.. it's all worth it.

That moment when you reach into the backseat to unbuckle her carseat and remark in the -30 degree weather "Why did you take your shoes and socks off??" and she responds by putting her finger to her nose and singing the syllables to the word "stink-ey" even though she can't quite say the proper consonants yet.. it's all worth it.

That moment when she finally performs a new 'trick' all on her own, such as panting like a dog when asked what a puppy says.. it's all worth it. (

That moment when she is happily playing alone across the room and suddenly you hear her humming and notice she's doing the actions to 'The Itsy Bitsy Spider' all by herself.. it's all worth it.

That moment when she discovers you own a piano and turns into a baby Mozart before your very eyes... it's all worth it.

That moment when she gives you her famous all-encompassing grin and your whole world lights up like the most amazing fireworks show.. it's all worth it.

That moment when she finds her hair bands on the floor and instead of screaming every time you try to put her hair up, she crawls over to you, puts them in your hand, pats her head, then sits patiently while you put her hair in piggy tails... it's all worth it.

That moment when you feel like you have made absolutely no progress in therapy for months and months and then one day she surprises everyone by doing something new and unexpected, like letting go of the shelf she's standing against and walking to you for the first time.. it's all worth it.

That moment when we all sit in a family circle on the floor and she walks between her brothers, kissing them on the head everytime she reaches them.. it's all worth it.

Yes, sometimes being a SN parent is frustrating. Sometimes it's discouraging. Sometimes it's just plain hard. We've had our fair share of bad days and I'm well aware that they are not over. Yet there is also so much immeasurable joy in this life. There are so many good, amazing, life-altering moments that far outweigh the few bad ones we've had. Enough so that when I am thrown into a situation where I realize our normal is not the world's normal, and our 2 year old is not the world's typical 2 year old, I am caught off guard. Because this life doesn't seem different to me. Ella doesn't seem different to me. This girl has brought so much joy and happiness into our lives and I absolutely cannot imagine life without her. I'm sure I will still have moments of sadness because like the story goes, "The pain of not going to Holland will never, ever, ever go away," but I'm pretty sure I can count on this face to keep me going, even on the hardest of days..

Wednesday, February 13, 2013

Sometimes I Get Sad

Last weekend we went on a little we'resickofwinter/tiredofbeingcold/ifwe'recoopedupinthehouseonemoredaywe'regoingtogocrazy(er), mini-vacation to a local-ish waterpark. I figured since we can't afford it right now, I would use my vivid imagination to pretend my hard plastic chair was actually a stretchy knit hammock, the feel of splashing water was ocean waves on my toes, the sound of children screaming was actually seagulls gliding through the air, the stale gatorade in my Nalgene bottle was a mixed concoction of fruity tropical yumminess that I wouldn't even be able to drink right now, and the little boy yanking his pants down and peeing all over at the top of the waterslide immediately before my children immersed themselves in that very water was... well... that one was hard for even my imagination to explain away.

Anyways.. It kindof worked. To say that the boys had a BLAST would be an understatement.. 

In fact.. I love that this is the only picture I could get of Charlie going down the bigger slides because for at least an hour this is all I saw... a streak of orange shorts and a grin stretching from ear to ear as he ran back to the stairs to do it again. :)

This weekend we heard lots of giggles,

made amazing memories,

enjoyed some much needed down time,

and actually witnessed a few rare moments of brotherly love.

Even Ella was shocked at that!

But something was eating at me all weekend. It started almost as soon as we got to the waterpark. Upon arrival, we quickly checked into our hotel room, changed into our swimming suits, and hit the water. Well, most of us anyways.. Ella was out of sorts from the beginning. She was uneasy in our strange hotel room, uncomfortable in her swimming suit, and the noise at the waterpark was almost deafening to her. (She can hear!) She wanted nothing to do with the water (it was kindof cold..), clung to me the whole evening, and refused to splash and play. 

And the entire time I was holding her on the sidelines, watching my husband and kids play, I was also forced to watch other kids play. Other two year olds. Two year olds who could walk. And run. And talk. And play. And climb the stairs. And go down the slides. And have fun. And as much as I tried not to, I spent the evening watching these kids, wondering how old they each were. I would see the saggy diaper butt toddler waddling around and think "they must be Ella's age." And then I would realize that no, that child was more like a just-turned 1 year old. Ella is 2. What do 2 year olds do? So then I would search out an older looking child. The girl with bouncy pigtails who was excitedly telling her mom about the slide and climbing in and out of the pool all by herself... Surely, she couldn't be 2.. Not Ella's age.. could she? 

As I watched these children play, I was mercilessly haunted by images of what things "should" be like. If the small but oh-so significant letters CdLS would have never come into our life. We would have 3 kids splashing in the pool. Playing together. A little girl who could tell us how much fun she was having. A little girl who could run into the water and not be scared. A little girl who didn't even notice the loud noises because she was having too much fun. A little girl who was throwing a 2 year old tantrum because she didn't want to leave. A little girl who was a typical 2 year old.

When I say that I love my Ella girl just the way she is, I mean it. When I claim that I wouldn't change her for the world, it's the truth. When I write that her life has taught me more about love and faith and living than anything else ever could, I am sincerely honest. When I reveal that I feel beyond blessed to have Ella AND CdLS in my life, I'm truly not trying to overcompensate for my broken heart over her disabilities. It's just that.. sometimes I get sad. Sometime it's hard not to entertain those toxic thoughts of how life "should" be. Sometimes it's hard not to compare. Sometimes when I'm ripped from my comfort zone surrounded by Ella-awesomeness and forced to immerse myself in other people's typical lives, I have a hard time coping. Not all the time.. but sometimes. It's a complex balancing act of emotions trying to juggle being content where we are, yet yearning for something that is not..

I hate to even admit these feelings because part of my mission with this blog is to show people that having a child with special needs, a child who is different, is NOT the end of the world like I once thought it was. That there is not as much to be afraid of as you think. That there is incredible joy and happiness in raising these children. That they are unique individuals who have dreams and personalities and bright futures ahead of them just like you and me. That they are more alike than different... But another part of my mission with this blog is to be completely honest. And share exactly what I'm feeling in hopes that someone else might need to hear these very words to affirm their emotions. So this is where I am right now. 

I'm happy to say the weekend did get better for Ella and I. 
The water was much warmer on Saturday and the noise didn't seem to bother her anymore,  

and she discovered she LOVES splashing 

almost as much as floating down the Lazy River.

I am absolutely so happy with how Ella is doing and the direction our lives have taken with her. But I think it's normal to sometimes still feel sad. I thought this might be a good time to share a story I'm sure almost all special needs parents have read, but maybe not everyone else has called "Welcome to Holland." It might help those of you who aren't in this situation understand how we that are feel.. And help understand the struggle that I have with still being sad sometimes. I know I read it soon after Ella was diagnosed with CdLS and while there was a part of me that wanted to rip it up and throw it out the window and continue to throw my pity party, there was also a part of me who saw great truth in it. Throughout our journey I have found immense strength in it and have grown to absolutely love it. Enjoy!

Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Friday, February 8, 2013

Evil Knievel Ella

I've mentioned before that you just do NOT walk away from Ella in her high chair. Under any circumstances. But I didn't go into why.. The reason is not because she throws food all over the floor. Or smears it in her hair. Or screams her little lungs out (well a little of that...).

It's because she turns into Evil Knievel Ella, performing anti gravity, death defying stunts that can stop even the strongest beating heart in a fraction of a second..

You may leave her looking like this

 But mere seconds later you could find any one of these scenarios..

I sincerely do NOT understand why she is too timid to take steps on her own..

Wednesday, February 6, 2013

and the gods of OLOGY day shined upon us

Ophthalmology, Gastrointestinology, and Cardiology.. Oh my!

We had all three of those yesterday and I do have to say that all in all things went very smoothly.. We had great weather for traveling, made it to all our appointments early (which I'm ashamed to admit NEVER happens), had naps on the way there and the way home (Ella.. not me), and got good news all around. 

Our busy day started with a 2 hour drive to Ophthalmology. Which took no more than... 2 minutes. Seriously. (SO glad that's not the only appointment we went for!) We no longer sat down in the waiting room than they called us back to the office.. Then we barely had time to take off our coats before the doctor waltzed in, shined a few lights, looked through a little microscope at warp speed and said we were good to go. We had barely even unwrapped our Nutragrain bar. Or stretched our legs. And we still had 2 hours before our next appointment. Another day of sacrifices I guess.. a trip to World Market. *sigh... And although our search for a functional yet cute homemade laundry soap container turned up short (if anyone has any ideas I'd love to hear them!) and we left without buying a single thing (which i didn't even know was possible and apparently my husband didn't either.. I probably shouldn't have clued him in to that little secret..) it was still a nice trip.          

Next up was lunch. We opted to eat at the hospital cafeteria since our next 2 appointments were there and I thought it would just be easier. They do have good food, and even though it's been over a year of me spending 5 weeks eating there every. single. day., I sometimes still have nightmarish flashbacks of the same ol food. Except today. The lunch special? Sweet and Sour Chicken over Fried Rice and Egg Rolls. *Ahhhhhhh!! (that was angels singing from Heaven to this happy pregnant lady if you didn't get that..) PLUS we got to see one of our old PICU nurses and a Respiratory Therapist who recognized us (which is a small miracle considering we haven't seen her for over a year, Ella's looks and personality have changed 200%, and I wasn't wearing my standard PICU wardrobe of ratty sweatpants, sweatshirt and slippers sans make-up. In fact.. one time while Ella was a patient I had a family picture of us on our desk and one of the nurses asked if that was my sister. Until she realized it was me. With makeup on. lol) 

Anyways.. we had plenty of time to enjoy our lunch, walked down to GI and we weren't even stepped away from the check-in desk when the nurse came to the waiting room and called our name. No waiting for us today! While our GI doc wasn't thrilled with Ella's weight gain (or lack thereof) I know she's doing fine, so I'm not worried at all. Next appointment I think I'll come better armed with CdLS growth charts, Ella's proportion scale (which she's right on track for) and plenty of testimonies of CdLS kids just being small so she never dares to utter the words G-tube to me again.. (unless there is, of course, a good reason Ella would need one. I just don't think being proportionately perfect, growing in height 2 inches since our last appointment, being at the top of the CdLS growth chart, and pretty on track developmentally are good reasons to get one. Just sayin'...)

Then we walked across the hall to Cardiology where we were told Ella was their best patient of the day. Of course.. :) She was getting tired though and I was a little worried about how her Echo cardiogram was going to go, especially when the tech shut the door and Ella started screaming her head off. But never underestimate the power of the Praise Baby movie and a package of fruit snacks! She was an absolute ANGEL for the entire procedure, sat completely still, and barely moved a muscle. She even waved and smiled to the other tech. The Dr. said everything still looks great with her heart so we'll keep on track with her yearly check ups. It's amazing to think that only 2 years ago Ella was a tiny little 6 pound baby laying on that table getting her very first echo, with scared out of their minds apprehensive parents near by, and to think how far she (and we) have come!

You know.. a few years ago the thought of taking one of my children to just one of these type of appointments would have struck fear and anxiety in me. I'm sure I would have worried incessantly, over-analyzed everything, and been stressed to the limit. Today? I can handle ophthalmology, gastrointestinolgy, and cardiology all in one day, all by myself, without even breaking a sweat. I'm not saying that as a testiment to my own strength or know-how, but as proof that there is nothing special or unique about me that makes me any better for this job than anyone else. It's all about adapting and adjusting to what life throws at us. Aaaaanndd, Chinese Food paired with a little World Market mixed in there doesn't hurt a bit either. :)