Curiosity presents Opportunity
The other day a fellow mom posted a story on our CdLS Facebook Discussion Board that I wanted to share with you all. I hope it touches your heart as much as it touched mine.
She wrote..
Wow. What a powerful message. I mean.. we've all done it. Looked a few seconds longer at someone a little different from ourselves. It could be someone with an obvious syndrome, a missing limb, or a noticeable scar. It could be someone toting specialized medical equipment, or merely someone of different nationality. It's usually not done out of a desire to be rude or make that person feel uncomfortable, but rather merely out of curiosity. We're curious what happened and whether that could happen to us. We're curious how they live their lives and whether we know someone similar to them. We're curious about our differences and why they're there. We're just curious.
And that's not necessarily a bad thing. Curiosity is a wonderful tool that presents us with an opportunity for learning, an opportunity for growth. A chance to seek out and understand. A chance to form a relationship with someone. A chance to look outside of our own life and into that of another. A chance to come together to accept and embrace our differences. But sadly, all too often our curiosity has the opposite affect. Our curiosity can cause us to look, but when we're caught in the act, to be ashamed of ourselves and the fact that we noticed our differences. Our curiosity can cause us to feel uncomfortable and quickly glance away. This can give the impression to the person who is 'different' that there is something so horrifically wrong with them that causes you to stare, but not even acknowledge their presence or worth as a human being. This can be entirely defeating to a person who has struggled their whole life to just be "normal." It can crush the heart of a mother trying so hard to build a better life for her child.
The thing I love about this story is that the father didn't succumb to that feeling to turn the other way, to hush his child and squelch his desire to know more. Instead, he gave his son a great gift. The gift of fulfilling his curiosity in a respectful manner and encouraging an opportunity for growth. If that father would have shushed his child into believing that there was something so wrong with this other boy that he shouldn't be talked about or even acknowledged, he would have missed out on an incredibly valuable lesson in understanding. He would have missed out on learning that everyone is different. He would have missed out understanding that everyone needs help at some point or another in different areas in our lives. He wouldn't have heard that God creates all people differently. He might not know that all of us, even people with only 3 fingers, are uniquely perfectly made. He would have missed out on learning that this little boy, though he may have looked different from himself, was just that--a little boy, with feelings and dreams just like his. He would have missed so much..
How many missed opportunities like this do we ourselves have?
I hope the next time we see someone who is different and causes us to unintentionally look a few seconds longer, we take that opportunity to embrace our curiosity instead of run from it. To reach out and give a smile instead of a look of shame, a wave instead of turning the other direction, a friendly "hello" instead of our deafening silence that speaks louder than we know. To embrace the difference in all of us and make this world a little better for ourselves and for our children.
And that's not necessarily a bad thing. Curiosity is a wonderful tool that presents us with an opportunity for learning, an opportunity for growth. A chance to seek out and understand. A chance to form a relationship with someone. A chance to look outside of our own life and into that of another. A chance to come together to accept and embrace our differences. But sadly, all too often our curiosity has the opposite affect. Our curiosity can cause us to look, but when we're caught in the act, to be ashamed of ourselves and the fact that we noticed our differences. Our curiosity can cause us to feel uncomfortable and quickly glance away. This can give the impression to the person who is 'different' that there is something so horrifically wrong with them that causes you to stare, but not even acknowledge their presence or worth as a human being. This can be entirely defeating to a person who has struggled their whole life to just be "normal." It can crush the heart of a mother trying so hard to build a better life for her child.
The thing I love about this story is that the father didn't succumb to that feeling to turn the other way, to hush his child and squelch his desire to know more. Instead, he gave his son a great gift. The gift of fulfilling his curiosity in a respectful manner and encouraging an opportunity for growth. If that father would have shushed his child into believing that there was something so wrong with this other boy that he shouldn't be talked about or even acknowledged, he would have missed out on an incredibly valuable lesson in understanding. He would have missed out on learning that everyone is different. He would have missed out understanding that everyone needs help at some point or another in different areas in our lives. He wouldn't have heard that God creates all people differently. He might not know that all of us, even people with only 3 fingers, are uniquely perfectly made. He would have missed out on learning that this little boy, though he may have looked different from himself, was just that--a little boy, with feelings and dreams just like his. He would have missed so much..
How many missed opportunities like this do we ourselves have?
I hope the next time we see someone who is different and causes us to unintentionally look a few seconds longer, we take that opportunity to embrace our curiosity instead of run from it. To reach out and give a smile instead of a look of shame, a wave instead of turning the other direction, a friendly "hello" instead of our deafening silence that speaks louder than we know. To embrace the difference in all of us and make this world a little better for ourselves and for our children.
Crazy Weather Week
We had a bit of a crazy week here last week.
Even crazier than normal...
at least weather-wise.
Within 24 hours we went from 70+ degree perfect fishing weather
to a pounding down ping pong sized hail storm, to an entire evening filled with sleet, all the while lightning and thundering, then turning into a snow storm resulting in 2 whole days off of school.
While we are all hoping spring decides to come someday SOON, the boys at least made the best of it..
Note: I had this post ready to go yesterday right as I heard about the tragedy in Boston and couldn't bring myself to publish it. My thoughts and prayers are with everyone affected by this horrible and senseless loss.
Thank You For One Year
It's been one year since I posted my very first blog about Ella. One year since I decided to open up and share our whole story with the world. One year since I sat scared and brokenhearted at my computer, debating whether or not I really wanted to hit that 'publish' button. One year. And today as I read through my very first post and reminisce, I am completely amazed by the transformation that has occurred. Oh, I still sat here with tears streaming down my face as I read through it, just like I did last year, but the tears were different this time. So much has changed.
I really didn't know what to expect when I started this blog. I knew I had to let people know about Ella. About CdLS. I knew I couldn't keep living this "lie" of letting people believe that Ella's small size and delays were directly related to her hospital visits for RSV and Salmonella Poisoning. I knew I couldn't keep 'hiding' her disabilities away. I knew if I wanted to reap the full benefits of the blessings Ella was bringing into our lives, I had to first be honest about them. I knew putting myself out there would be scary. I knew I was terrified of what people would think and say. About Ella. About us. I knew our lives would never be the same.
But what I didn't know was so much bigger.
What I didn't know was the insurmountable support that would surround us because of sharing our story. I didn't know how much people cared-people I hadn't talked to for years, people that I've never even met. I didn't know there were others out there struggling with the same feelings I was having. I didn't know I wasn't alone. I didn't know I would inspire people with our story. I didn't know I would become someone others reached out to when facing a scary situation with their kids. I didn't know how much healing I would find from being honest. I didn't know how writing would help me process the difficult and laugh about the good. I didn't know how much this blog would change me.
I can't say THANK YOU enough to everyone who has followed along and supported Ella, me and our entire family on this journey. Thank you for being there for me and walking alongside me this past year. Thank you for laughing with me (or at me.. whatever) when I needed relief. Thank you for allowing me to, and for celebrating the 'little things' with me. Thank you for crying with me when things were hard. Thank you for holding me up when I was down and supporting me when I needed it most. Thank you for sharing your own stories and trusting me with them. Thank you for encouraging me. Thank you for seeing the beauty that I see in my daughter, not despite her disabilities, but because of the ways they've made her, and us, stronger. Thank you for accepting her just the way she is. Thank you for reading. For sharing. For commenting and 'liking' and making this girl feel so incredibly loved.
I really didn't know what to expect when I started this blog. I knew I had to let people know about Ella. About CdLS. I knew I couldn't keep living this "lie" of letting people believe that Ella's small size and delays were directly related to her hospital visits for RSV and Salmonella Poisoning. I knew I couldn't keep 'hiding' her disabilities away. I knew if I wanted to reap the full benefits of the blessings Ella was bringing into our lives, I had to first be honest about them. I knew putting myself out there would be scary. I knew I was terrified of what people would think and say. About Ella. About us. I knew our lives would never be the same.
But what I didn't know was so much bigger.
What I didn't know was the insurmountable support that would surround us because of sharing our story. I didn't know how much people cared-people I hadn't talked to for years, people that I've never even met. I didn't know there were others out there struggling with the same feelings I was having. I didn't know I wasn't alone. I didn't know I would inspire people with our story. I didn't know I would become someone others reached out to when facing a scary situation with their kids. I didn't know how much healing I would find from being honest. I didn't know how writing would help me process the difficult and laugh about the good. I didn't know how much this blog would change me.
I can't say THANK YOU enough to everyone who has followed along and supported Ella, me and our entire family on this journey. Thank you for being there for me and walking alongside me this past year. Thank you for laughing with me (or at me.. whatever) when I needed relief. Thank you for allowing me to, and for celebrating the 'little things' with me. Thank you for crying with me when things were hard. Thank you for holding me up when I was down and supporting me when I needed it most. Thank you for sharing your own stories and trusting me with them. Thank you for encouraging me. Thank you for seeing the beauty that I see in my daughter, not despite her disabilities, but because of the ways they've made her, and us, stronger. Thank you for accepting her just the way she is. Thank you for reading. For sharing. For commenting and 'liking' and making this girl feel so incredibly loved.
As I enter my second year of blogging I am excited to see where this year will lead me.
Knowing what I know now, it's sure to be life changing.
The Padded Room
It's been five weeks of sick kids. Five loooooong, agonizing, painful weeks where I did seemingly nothing but wipe noses, suck snot, hold Ella, go to the doctor, clean up puke, wash sheets, administer medicine, hold Ella, clean up puke, wash blankets, go to the doctor, give more medicine, wipe tears, hold Ella, clean the toilet, disinfect the house, hold Ella, wake up 20 times a night, give hugs, rub backs, hold Ella..
And today I find myself in a padded room.
No, I was not admitted to the psychiatric ward. Although I think I came close.. I almost lost it somewhere during week 5. Or maybe I did.. No, the padded room is my creation entirely for Ella. (Although there is a chance it could come in handy for me if another single person wakes me up this week puking/coughing/or fine.. in general just wakes me up this week...)
For months I've been conflicted on how to answer the questions "Can Ella walk?" I always answer with a hesitant "No, not yet," but the truth is, yes, actually she can walk. I've seen it. What Ella can't do is fall. Or, I guess she can't fall the right way (aka: without a concussion or needing stitches) So she doesn't. Walk that is. If she weren't so darn afraid of falling, or knew how to catch herself at least, I just know she would be able to take off. And my tired back so desperately needs her to take off.
So this week, now that we are finally healthy, we are working on falling. Not walking.. but falling. And where better to fall than a padded room?
We set up a ring of pillows/bean bags/blankets/whateverwecouldfind around the coffee table for Ella to fall on to.
(For the first time I was thankful that JJ agreed to let the boys keep the old stained, ripped up cushions from our old couches after they were in hysterics for hours upon learning the tragedy that we were getting rid of them..)
Then I set her loose.
She was pretty proud of herself.
And seemed to enjoy it.
But was thankful when it was time for a well-deserved break
and ready for a nap.
But Charlie was especially thankful when Ella was done so he could use the pillows for their one true purpose..
*Note: There were not the pictures I wanted to use for this post, but the awesome pics I took previously were on a SD card that decided to fail me this morning.. So I had to settle. Of course I wasn't all that happy with the first set of pictures either, but once they were lost, locked away forever on that little square of plastic they suddenly took on the role of 'most prized and perfect, irreplaceable photos ever taken'. Sigh.. And yes, in case you're wondering I am raiding the kids' Easter candy right now. And why yes.. it is making me feel better.
Birthday Extravaganza per Ella
I mentioned there was some strange happenings going on around here the other day.. It all started out innocently enough with a single present, some cookies, ice cream.. all stuff I could handle and may have even slightly enjoyed.. (What?? legos are strangely tasty..) But it got worse. Much worse. As the weekend progressed, a full out Birthday Extravaganza ensued. A million people filled our home, (okay fine.. more like 30. Whatever..), there was special cake and ice cream,
Well, I'm here to tell you that I've had enough of birthdays around here. I'm ready for this house to revolve around me again. Even though I of course didn't show it and barely acknowledged any of them, I secretly enjoyed having 5 therapists here to see me and only ME today. You may think that being held or having direct contact with someone 23 out of the 24 hours a day would be enough, but it's just not. I've got to do something to get that extra hour of my day back.. I'm thinking coming down with that stomach bug Nolan had yesterday sounds like a good plan. What do you think? Can my mom handle Sickness Week #5??
Ninja Turtles
more Ninja Turtles,
and I even heard rumors of Monster Trucks..
Without me.
Happy Birthday Nolan!
Dear World, From Ella
Dear Blogging World,
I am writing to inform you of a very serious injustice currently being committed right here in my very own home. As many of you know I decided to let the cat out of the bag a few weeks ago and clue my parents in that I actually can climb the stairs by myself. At first they were very excited and I got an outrageous (yet entirely appropriate) amount of claps, cheers and praises. Hugs and kisses were doled out on a minutely basis and life was oh so good. But after only a few short days I noticed something not quite right.. As I crawled around the corner to perform my newest death-defying trick, I saw it.
That's right.. portable baby jail.
How could they?!?
I worked so hard on keeping this secret from them from so many months.
They waited so long to see it. And now it is being denied me??
Well played parents.. Well. Played.
They couldn't possibly be banning me from the stairs because I often get to the very top, stand up, let go, and decide I would rather walk down holding the railing than crawl down backwards like mommy taught me.. Who cares that I can barely even reach the railing.. that's how everyone else in this house gets down the stairs, why can't I?
And I'm sure it's not because sometimes I just stand on the stairs and scream because I would rather have mommy carry me down than do it myself.. What? Just because I can do something doesn't always mean I will. (note: I NEVER do this for dad..) And mom-you of all people should understand this.. You physically can go wash those dishes right now, can't you? That's what I thought...
I'm fed up with it.
This baby jail is putting too much of a damper on my daily fun of sneaking out of the room
to tower on the top stair with no hands and give mommy heart attacks.
I fully expect that with your help this issue can and will be resolved in a timely manner.
Until then I will continue to handle myself with the great dignity and self-respect I have been..
Oh.. and it seems something else strange has been going on around here today.
Presents and cookies and ice cream and specials treats like skipping rest time and watching movies..
but apparently it's not all about me so I'm not too concerned..
Sincerely, Ella
Happy Birthday Charlie!
Weekend Update
Here we are.. entering Week #4 of random illnesses rampaging our house. Week #1 found us battling some kind of stomach-achey-don't-feel-like-eating-crabby-all-day-clingy-and-whiney-bug-thingey. Week #2 was a stuffy-runny-nose-bronchitious-cough-crabby-all-day-clingy-and-whiney-bug-thingey. And Week #3 was a doozey, presenting us with RSV-and-Strep-crabby-all-day-clingy-and-whiney-thingey... (Anyone notice a theme here??) Of course this last illness came directly on the heels of me bleaching every doorknob, light switch, and surface in our house and actually feeling like I had my life together for a day or so.. making pre-made freezer meals, keeping the house picked up, dishes done, and not succumbing to my usual attitude this time of year of "Eh.. I'll mop when spring is over."
And the universe rebelled.
We were hammered with 10 inches of ice and snow on Monday
then RSV and Strep for Ella on Wednesday, Strep for Nolan on Thursday, and an ever-present, constant, cannot stop for a single minute cough for Charlie lasting alllll last week and into this.
(Do I sound frazzled? I feel frazzled..)
Has anyone else ever had fish? And maybe you neglect to clean their tank for... far too long. And one day you realize you can't even see your fish through the haze of scum and grime.. And you decide to clean the tank. And you scrub and scrub until it's sparkling and shiny. And you put the fish back in, expecting them to thrive in their new bacteria free environment. And you wake up the next morning to find them floating belly up. Because their poor little bodies just couldn't handle the shock of these conditions..
Yeah.. that's how I feel. I guess perhaps our bodies just aren't meant to have our lives all together...
Oh well. It was a good run.
On the up side, Ella is getting pretty good at this sick thing. I found her taking her own temperature,
then crawling around with a medicine cup, apparently self-medicating..
And then later sticking the snot sucker up her nose and sniffling.
Followed by promptly putting it in her mouth.. Ugh.
But anyways.. thank you for all your thoughts and prayers and concern last week. We seem to slowly be on the mend and are pretty excited that Ella managed to stay out of the hospital and without any exciting emergency transportation this time.
I am hopeful (fingers crossed..) that week #4 will be a week of healing and a turning point for our disease-stricken home so we can get out and enjoy this spring weather.. you know.. whenever we start to get it.
Bloggin' Blues
I'm going to be honest here.. I've been feeling a little down about my blog lately. A little unsure of where I'm going with it and if it's worth the effort. There have been many evenings lately where I put the kids to bed and am unable to move from my spot on the couch until after I have been asleep for many hours and husband says "It's time for bed." There are so many projects I want to get done, books I want to read, a house I really should clean, a baby in the making, and on top of all that do I need the added pressure that I should really be writing a blog post too?
Not to mention I don't always know how other people perceive me through this. I'm really a very private person and never thought I would be putting my life out there for the world like this. I have received many kind, encouraging words along the way and don't get me wrong.. I don't do this as some sort of popularity contest. I really try not to put emphasis on how many likes or comments or pageviews I get. But that being said, it can definitely be hard to pour my heart and soul and much coveted and precious time into something and throw it out into cyber space for all to see, only to receive 0 feedback on it. It leaves me wondering "Did I say something wrong? Did I offend someone? Are people bored? Do they even care???"
I've had a lot of thoughts lately that maybe I should call it quits on the blog.. Maybe I should spend that time doing something my household would appreciate more.. something exciting like picking up toys or washing dishes. I hardly have any energy left in the evenings after the kids go to bed in the first place, do I really want to use what little I have on something I don't know if anyone likes or appreciates anyway? (Not that my children would appreciate picked up toys or a sink full of clean dishes either..) I've been down on myself. Hard on myself for not making more of an effort to write more. Be more creative. Network more to reach more people. I've been thinking maybe I should just close down shop. Live my life without the need to reveal all my embarrassing flaws to the general public.
Until the other day. When I received an email from a sweet mother who also happens to have a baby with CdLS. She wrote me the kindest note saying how much she appreciated my blog. How she's read our entire journey. How she hasn't been able to reach out to anyone else in the CdLS community yet. How what I've written has made her feel for the first time that someone actually understands. That someone actually gets her. How reading Ella's story gives her hope for her daughter. And she thanked me for writing.
Wow.
I was flooded with much needed reminders of why I write this blog in the first place. It started as a way of healing for myself and informing others about Ella's diagnosis. But it's growth to what I hope to be a source of encouragement to others, to both those in a similar situation and not. I realized again that it doesn't matter how many 'likes' I get or 'comments' are posted. It doesn't matter if I win any awards or are featured in a magazine's 'top blogs' list. It doesn't matter if I have 1000 followers or 1. It truly doesn't matter. If that one follower is someone that needs to hear my words at that moment and is someone I can reach out and provide comfort for, then it is worth it. Thanks for reminding me.
Not to mention I don't always know how other people perceive me through this. I'm really a very private person and never thought I would be putting my life out there for the world like this. I have received many kind, encouraging words along the way and don't get me wrong.. I don't do this as some sort of popularity contest. I really try not to put emphasis on how many likes or comments or pageviews I get. But that being said, it can definitely be hard to pour my heart and soul and much coveted and precious time into something and throw it out into cyber space for all to see, only to receive 0 feedback on it. It leaves me wondering "Did I say something wrong? Did I offend someone? Are people bored? Do they even care???"
I've had a lot of thoughts lately that maybe I should call it quits on the blog.. Maybe I should spend that time doing something my household would appreciate more.. something exciting like picking up toys or washing dishes. I hardly have any energy left in the evenings after the kids go to bed in the first place, do I really want to use what little I have on something I don't know if anyone likes or appreciates anyway? (Not that my children would appreciate picked up toys or a sink full of clean dishes either..) I've been down on myself. Hard on myself for not making more of an effort to write more. Be more creative. Network more to reach more people. I've been thinking maybe I should just close down shop. Live my life without the need to reveal all my embarrassing flaws to the general public.
Until the other day. When I received an email from a sweet mother who also happens to have a baby with CdLS. She wrote me the kindest note saying how much she appreciated my blog. How she's read our entire journey. How she hasn't been able to reach out to anyone else in the CdLS community yet. How what I've written has made her feel for the first time that someone actually understands. That someone actually gets her. How reading Ella's story gives her hope for her daughter. And she thanked me for writing.
Wow.
I was flooded with much needed reminders of why I write this blog in the first place. It started as a way of healing for myself and informing others about Ella's diagnosis. But it's growth to what I hope to be a source of encouragement to others, to both those in a similar situation and not. I realized again that it doesn't matter how many 'likes' I get or 'comments' are posted. It doesn't matter if I win any awards or are featured in a magazine's 'top blogs' list. It doesn't matter if I have 1000 followers or 1. It truly doesn't matter. If that one follower is someone that needs to hear my words at that moment and is someone I can reach out and provide comfort for, then it is worth it. Thanks for reminding me.
Mozart Ella
I mentioned a few weeks ago that Ella discovered we own a piano. I'm not sure how it happened.. A boy must have come by and randomly pounded on a key (we obviously don't play it much..) and Ella was intrigued. Her curiosity led to fascination. Which led to complete and utter obsession.
Ella LOVES to play the piano.
The past few weeks we have endured many hours stationed at the piano bench, countless meal times of whining fits because she can see the piano from her seat at the table, and many pounding headaches from all those pounding keys. And.. it sounds crazy but it really seems to be paying off. She's actually getting really good.
She.. well.. just check it out for yourself.
A stubborn girl
Ella is stubborn. She likes to do things her own way, in her own time. She doesn't want to be told what to do. She wants it to be her idea. If you try to make her do something she doesn't want to, she digs her tiny little heels into the ground and refuses to budge an inch. She is also a perfectionist. She doesn't want to show us anything new until she's positive she's not going to make a mistake. Until she can do it perfect. I, of course, have NO idea where such characteristics came from and have absolutely no firsthand experience with it myself.. Huh. Must just be one of those rare, spontaneous genetic chromosome mutations we've learned so much about.......
You all remember that one daya few almost SIX months ago when I posted about Ella climbing halfway up the stairs, right?
You remember how excited I was and how this was a new chapter in our lives? And how this meant so much with her progression and independence? Well.. what I've failed to mention since is that she has refused to climb the stairs again. Not just the stairs.. a single stair. That's right, this little girl who can climb, has refused to climb. I usually let her go at her own pace at learning things. I know she doesn't like being told what to do, but since I knew she already can do this, I wanted to push her a little to do it more and get a good workout at the same time. Just the other week I set her on the first stair, then sat one above her with my arms stretched out, ready to help pull her up into my arms and proudly love on her for doing such a good job. And what did she do? Stayed on that stair. Screamed. Refused to move. Showed me she knew how to climb down that stair backwards, and crawled around the corner, wailing for the world to hear about what a unfair and horrid mother she has. *Sigh...
So imagine my surprise when we were hanging out on a normal Saturday morning last week.. I was in the kitchen washing dishes and folding laundry (normal activities). JJ and the boys were picking up the toy room (fairly normal), and Ella was happily crawling around the house on her own... Wait-THAT was NOT normal, but we were going with it.. Needless to say, I was ecstatic about her sudden independence on this day, but I of course didn't want to acknowledge it. I knew that would end it. So I kept myself busy.. Not wanting to make eye contact or sit down for fear it would be all over, I ducked my head and ran upstairs to put some laundry away. Because I'm awesome like that and always put my laundry promptly away as soon as it's out of the dryer and folded. (Okay fine.. not really. I just desperately needed the extra basket that hadn't been unloaded for 2 weeks for more laundry.) While I was occupied I heard a thumping on the stairs. "Must be a boy needing help with something," I thought. I continued hanging clothes up. More quiet thumping. I listened. And heard both boys' voices seeming to come from downstairs. Is it a cat? I cautiously rounded the corner to find out. And who do I see teetering at the very tip top of the stairs?
None other than Miss Stinky Stink herself.. who just climbed the entire staircase by herself.
She is now completely obsessed with climbing up and down the stairs all day long and so very very proud of herself. Because it was her idea. I am so happy for her. I am. But seriously.. does anyone have any good ideas on how to make walking seem like her idea?
You all remember that one day
You remember how excited I was and how this was a new chapter in our lives? And how this meant so much with her progression and independence? Well.. what I've failed to mention since is that she has refused to climb the stairs again. Not just the stairs.. a single stair. That's right, this little girl who can climb, has refused to climb. I usually let her go at her own pace at learning things. I know she doesn't like being told what to do, but since I knew she already can do this, I wanted to push her a little to do it more and get a good workout at the same time. Just the other week I set her on the first stair, then sat one above her with my arms stretched out, ready to help pull her up into my arms and proudly love on her for doing such a good job. And what did she do? Stayed on that stair. Screamed. Refused to move. Showed me she knew how to climb down that stair backwards, and crawled around the corner, wailing for the world to hear about what a unfair and horrid mother she has. *Sigh...
So imagine my surprise when we were hanging out on a normal Saturday morning last week.. I was in the kitchen washing dishes and folding laundry (normal activities). JJ and the boys were picking up the toy room (fairly normal), and Ella was happily crawling around the house on her own... Wait-THAT was NOT normal, but we were going with it.. Needless to say, I was ecstatic about her sudden independence on this day, but I of course didn't want to acknowledge it. I knew that would end it. So I kept myself busy.. Not wanting to make eye contact or sit down for fear it would be all over, I ducked my head and ran upstairs to put some laundry away. Because I'm awesome like that and always put my laundry promptly away as soon as it's out of the dryer and folded. (Okay fine.. not really. I just desperately needed the extra basket that hadn't been unloaded for 2 weeks for more laundry.) While I was occupied I heard a thumping on the stairs. "Must be a boy needing help with something," I thought. I continued hanging clothes up. More quiet thumping. I listened. And heard both boys' voices seeming to come from downstairs. Is it a cat? I cautiously rounded the corner to find out. And who do I see teetering at the very tip top of the stairs?
None other than Miss Stinky Stink herself.. who just climbed the entire staircase by herself.
She is now completely obsessed with climbing up and down the stairs all day long and so very very proud of herself. Because it was her idea. I am so happy for her. I am. But seriously.. does anyone have any good ideas on how to make walking seem like her idea?
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 ofanxiety/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.
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
In fact, it almost made me wish we had gotten started on this whole sibling thing a awhile ago...
Almost.
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.
And somehow.. it's all worth it.
True story.
That Moment When 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. (must.get.on.video.soon.)
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.
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!
WELCOME TO HOLLAND
by
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.
Evil Knievel Ella
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..
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. :)
Ella.. can you hear me now?
Well, I guess we STIll don't know for certain.
While I hope that someday I will be able to write a post about how we know YES for sure Ella can hear perfectly... today is not that day. But we DO have a little better idea I think..
While I hope that someday I will be able to write a post about how we know YES for sure Ella can hear perfectly... today is not that day. But we DO have a little better idea I think..
Let me back up.. Ella had her ABR hearing test yesterday. To start with, the day held disheartening premonitions of starting out like the last dreaded brokeniPod/eatingaMcDonald'swrapper/nothinggoesright trip to Sioux Falls. We had a snow/ice/sleet storm predicted for my early morning travel conditions, a child with multiple signs of Strep Throat (not Ella), a husband trying to save his vacation days for when the new baby comes, and a 1 1/2 hour (or more) drive where I was supposed to keep Ella awake the entire way. *sigh..
Fortunately, the day turned around.. The snow and sleet apparently missed us, my parents volunteered to watch and take Nolan to the doctor (he does have Strep..), Ella slept some on the trip despite my best efforts of stopping a few times to get her out and cold, hyping her up on M&M's, and singing obnoxiously loud and off key listening to the radio.. yet luckily she was still tired for her ABR test, and most importantly there was NO eating of a wrapper yesterday (at least on my part..). I'd call that a SUCCESS!
Now, if you're an average person (aka NOT a CdLS parent or an audiologist :) ) you might not be all too familiar with different kinds of hearing tests. A year ago I had no idea there were any more than the standard "raise your hand when you hear the beep" kind of test... Now I consider myself an expert-in-training. Ella has never passed an OAE test, where they insert a probe in your ear and try to read the sound waves that bounce off the ear drum, probably because of her teensy tiny ear canals, but the ABR test is supposed to be a little more accurate for situations like this. In the ABR test, Ella had to have electrodes attached to her head and a probe in her ear that made clicking noises of different sound levels, while the electrodes read her brain's response to them. Typically small children need to be sedated for this kind of test since it requires 1-2 hours of absolute still and silent behavior... something I'm pretty sure NO child knows anything about. But when scheduling Ella's appointment the receptionist told me that her ABR would be UNsedated.. Imagine my surprise. The idea of Ella sitting absolutely still and quiet with wires and tubes attached to her head was laughable.. Until I read more about it. Our doctor uses a technology apparently a lot of others don't, in which there is a filter that allows for some sound and movement to occur. And while she did have a few wires attached to her, it was considered wireless since the wires were attached to a small box, which transmitted the information to the audiologist's computer on the other side of the room, allowing her to move around a little more.. Fancy.
I won't lie.. it started out a little rough. Ella didn't seem to mind the electrodes taped to her head, but the probe in her ear really bothered her, especially when it started making a loud, annoying clicking noise. I can't say I particularly blamed her.. It annoyed me too and it wasn't even in my ear. At one point during our wrestling match, I started to think that maybe this was a waste of time.. That we would have to come back for the sedated version anyways, but eventually with a little coercing from a baby movie and her blankie, she finally wore out enough to fall asleep clutching a fruit snack.. And we actually got to run the test! AND talk to the Doctor afterwards this time.. Yay!
When we finished, the audiologist and Doctor took some time looking over the test results and when the Doctor came in the room he showed me the waves and peaks and how they looked and were supposed to look. I asked some questions, he replied with some doctor-jargon-mumbo-jumbo, and when my eyes started to glaze over slightly, he finally stopped, put down his papers, looked at me and said "Basically, I'm not worried.." Yippee!!! Because I haven't been worried about her hearing either and that could have easily gone one of two ways.. Either I was a loving, intuitive mother with wonderful instincts, or I was a neglectful waste who was putting her daughter's future in jeopardy by ignoring a basic need.. Whew! So glad it was closer to the first..
So while it wasn't exactly the she-passed-with-flying-colors-ending-our-relationship-with-our-ENT finale that I was hoping for, all in all it was a pretty good day. But let me tell you.. it was not without sacrifice. Letting someone else care for my two unbearably crabby (and sick) boys while blissfully meadering through the fabric store and trying to keep Ella awake, spending my afternoon nestled in a cozy, oversized recliner in an oh-so-relaxing darkened room, cuddling the sweetest sleeping baby girl, coming home to a husband who had been home for 2 hours by himself and had started the laundry, picked up the house, and cooked supper? Ohhhhhh the sacrifices we make for our kids... ( - :
A healthy baby
Congratulations!! You're pregnant! Do you hope it's a boy or a girl?
"Oh we don't care.. As long as the baby's healthy that's all that matters.."
We hear this all the time.. don't we? As long as the baby's healthy that's all that matters.. It seems like the right thing to say-the noble thing. We live in a society where to judge someone based on their gender is wrong, to hope for a boy over a girl or vice versa might be frowned upon, but where expectations for healthy and "normal" are perfectly acceptable. A society that all too often overlooks the individuality of a human being and instead judges them based on a label or stereotype. A society that actually encourages the "removal" of "fetal tissue" (aka YOUR BABY) that may have a different combination of genetics than you or I. A society that looks upon someone who is different than our closed-minded selves as living a sad life filled with lonlieness and suffering.
I hear people say it all the time. Friends, family, strangers, Christian community members.. As long as the baby's healthy that's all that matters.. I had never thought much about the phrase before Ella was born. I had probably fallen victim to the trap of believing it was truth as well. Until January 6, 2011. And my world was turned upside down.. When Ella was a newborn, there were honestly countless occasions where unsuspecting strangers would come up to me and my new baby, have no clue what we were dealing with, ooh and ahh over her, and say to me in a loving voice "Ohhhh... how beautiful. As long as she's healthy that's all that really matters, isn't it sweetie?"
I never knew what to say.. I would stare at them blankly, stammer a few words of thanks, and try to blink back the tears and I quickly walked away. But what I really wanted to do was shout at the kind old lady who was trying to congratulate me that "NO! It isn't all that matters!" To say that a "healthy baby" is the only thing that matters is an absolute slap in the face. A rip across my already wounded heart. To say that, makes my daughter's life a failure. Because everyone knows "healthy" is really code for "normal." You hope for a 'healthy' baby, but you're not afraid your newborn is going to come out with a bad case of the sniffles. Or a weird fungal infection on his toes. Or Carrot Addiction (It's a real thing. Go ahead.. Google it.) No.. you're hoping for things like the right number of chromosomes, 10 fingers and 10 toes, a typically sized head.. You're hoping your baby is "normal." You're hoping your baby is not like mine. You're hoping your baby is not like Ella.
It was painfully difficult to hear, and sometimes still is, but you know what? I don't judge you for saying it. I get it.. I'm sure I used to say it too. No one wants their child to suffer. No one wants to see someone they love more than themselves struggle. We all want the best for our kids. We all want them to thrive and succeed. But what if.. what if success isn't defined in the way our shallow human minds see it? What if thriving means something completely different than what we're used to? What if a typically "healthy baby" isn't so important as you thought it was? What if a baby who wasn't born a 'healthy' baby turns out to be one of the biggest, most surprising blessings of your life?
Yesterday I went in for my first ultrasound with this pregnancy. When we first considered having more children after Ella, we knew it would be a different experience. It was. I honestly wasn't quite sure how I would react. My naive view of the world that 'bad' things happen only to other people had been stripped away from me. I was more educated this time. More aware. Would I scrutinize every single measurement the tech took and watch his face with intensity, trying to read any kind of sign of worry that might flash across it? Would I watch more carefully as he examined the chambers of the heart? Would I be anxious? Would I be able to enjoy myself and this precious time? I knew from painful experience that something could be 'wrong' this time..
I could have choked under all that pressure. I could have been swallowed in anxiety. But I didn't. And I wasn't. As the tech placed the wand over my slightly swollen abdomen and the view of our precious child appeared on the screen, a tear silently rolled down my cheek. I saw our beautiful baby for the first time and I knew. I was not afraid. Of genetic abnormalities. Of the number of chromosomes. Of something being 'wrong.' Of how our baby was wonderfully and fearfully made.
This time was different. This time I had something that I hadn't had before. I was armed with experience. I had been through my own sort of Hell and back so the fear of the unknown was lessened. I carried a shield of strength. Our family has been tested over the past 2 years and I know that no matter what happens with this baby, no matter what he or she might be like, we will get through it together and be stronger because of it. And most importantly I was consumed with love. Love that knows no boundaries. Love that puts no conditional limits on this baby of being "healthy" or not.
We will love this baby. Unconditionally. Boy or girl. Healthy or not healthy.
This baby.
This froggy-legged, Buddha-belly, indigestion-causing, 5 cartons of ice cream devouring, early morning Chinese food craving, making mommy a scatterbrained fool, sweet sweet baby.
No matter what. That baby.
"Oh we don't care.. As long as the baby's healthy that's all that matters.."
We hear this all the time.. don't we? As long as the baby's healthy that's all that matters.. It seems like the right thing to say-the noble thing. We live in a society where to judge someone based on their gender is wrong, to hope for a boy over a girl or vice versa might be frowned upon, but where expectations for healthy and "normal" are perfectly acceptable. A society that all too often overlooks the individuality of a human being and instead judges them based on a label or stereotype. A society that actually encourages the "removal" of "fetal tissue" (aka YOUR BABY) that may have a different combination of genetics than you or I. A society that looks upon someone who is different than our closed-minded selves as living a sad life filled with lonlieness and suffering.
I hear people say it all the time. Friends, family, strangers, Christian community members.. As long as the baby's healthy that's all that matters.. I had never thought much about the phrase before Ella was born. I had probably fallen victim to the trap of believing it was truth as well. Until January 6, 2011. And my world was turned upside down.. When Ella was a newborn, there were honestly countless occasions where unsuspecting strangers would come up to me and my new baby, have no clue what we were dealing with, ooh and ahh over her, and say to me in a loving voice "Ohhhh... how beautiful. As long as she's healthy that's all that really matters, isn't it sweetie?"
I never knew what to say.. I would stare at them blankly, stammer a few words of thanks, and try to blink back the tears and I quickly walked away. But what I really wanted to do was shout at the kind old lady who was trying to congratulate me that "NO! It isn't all that matters!" To say that a "healthy baby" is the only thing that matters is an absolute slap in the face. A rip across my already wounded heart. To say that, makes my daughter's life a failure. Because everyone knows "healthy" is really code for "normal." You hope for a 'healthy' baby, but you're not afraid your newborn is going to come out with a bad case of the sniffles. Or a weird fungal infection on his toes. Or Carrot Addiction (It's a real thing. Go ahead.. Google it.) No.. you're hoping for things like the right number of chromosomes, 10 fingers and 10 toes, a typically sized head.. You're hoping your baby is "normal." You're hoping your baby is not like mine. You're hoping your baby is not like Ella.
I can't begin to describe how incredibly painful it was to hear this from friends and strangers, to see it plastered all over Facebook every time someone would have a new baby or announce a pregnancy. As long as the baby's healthy that's all that matters.. As long as your baby isn't like HERS, that's all that matters.. Right around the time we were first dealing with all of Ella's issues, knowing she was not going to be your typical healthy, I remember crying out in anger, "Why??? Why isn't our baby healthy? If that's the only thing that matters then what does that mean for us? What did we do wrong?? Why isn't our baby healthy???"
It was painfully difficult to hear, and sometimes still is, but you know what? I don't judge you for saying it. I get it.. I'm sure I used to say it too. No one wants their child to suffer. No one wants to see someone they love more than themselves struggle. We all want the best for our kids. We all want them to thrive and succeed. But what if.. what if success isn't defined in the way our shallow human minds see it? What if thriving means something completely different than what we're used to? What if a typically "healthy baby" isn't so important as you thought it was? What if a baby who wasn't born a 'healthy' baby turns out to be one of the biggest, most surprising blessings of your life?
Yesterday I went in for my first ultrasound with this pregnancy. When we first considered having more children after Ella, we knew it would be a different experience. It was. I honestly wasn't quite sure how I would react. My naive view of the world that 'bad' things happen only to other people had been stripped away from me. I was more educated this time. More aware. Would I scrutinize every single measurement the tech took and watch his face with intensity, trying to read any kind of sign of worry that might flash across it? Would I watch more carefully as he examined the chambers of the heart? Would I be anxious? Would I be able to enjoy myself and this precious time? I knew from painful experience that something could be 'wrong' this time..
I could have choked under all that pressure. I could have been swallowed in anxiety. But I didn't. And I wasn't. As the tech placed the wand over my slightly swollen abdomen and the view of our precious child appeared on the screen, a tear silently rolled down my cheek. I saw our beautiful baby for the first time and I knew. I was not afraid. Of genetic abnormalities. Of the number of chromosomes. Of something being 'wrong.' Of how our baby was wonderfully and fearfully made.
This time was different. This time I had something that I hadn't had before. I was armed with experience. I had been through my own sort of Hell and back so the fear of the unknown was lessened. I carried a shield of strength. Our family has been tested over the past 2 years and I know that no matter what happens with this baby, no matter what he or she might be like, we will get through it together and be stronger because of it. And most importantly I was consumed with love. Love that knows no boundaries. Love that puts no conditional limits on this baby of being "healthy" or not.
We will love this baby. Unconditionally. Boy or girl. Healthy or not healthy.
This baby.
This froggy-legged, Buddha-belly, indigestion-causing, 5 cartons of ice cream devouring, early morning Chinese food craving, making mommy a scatterbrained fool, sweet sweet baby.
No matter what. That baby.
Go Granny Go
Thank you all SO much for you congratulations and well wishes on our big announcement! We are incredibly, overwhelmingly, wonderfully over the moon TERRIFIED excited about this! And besides feeling entirely ancient when I tell people that this is baby #4 (How is it possible I'm even old enough to have had 4 babies??? Wasn't I just in high school last week? I wasn't.. for the record.) things are going well and I'm feeling pretty good.
I have been assured by other CdLS parents that when their child started walking there was a major revolution in their independence. So that is what I'm banking on.. MAJOR. After months of inactivity from our walker due to lack of interest on Ella's part, I decided to unbury it from the pile of toys and stuffed animals it was smothered under to donate to our PT for her to use with other kids. You know.. kids who actually want to learn to walk on their own. Of course Ella saw the walker and it immediately became a prized possession akin to Charlie's broken airplane wing I tried to discard last week.. "But that's my favorite! I was going to play with that after rest time!!! Pleeeeease don't throw it away Mommy! Pwweeaasseee..."
Ella has been pretty excited about rediscovering her new "toy" and I am excited about the idea of her walking independently someday. Unfortunately though, it doesn't seem like the walker is doing much for her posture.. I can't help but sing a little every time..
I have been assured by other CdLS parents that when their child started walking there was a major revolution in their independence. So that is what I'm banking on.. MAJOR. After months of inactivity from our walker due to lack of interest on Ella's part, I decided to unbury it from the pile of toys and stuffed animals it was smothered under to donate to our PT for her to use with other kids. You know.. kids who actually want to learn to walk on their own. Of course Ella saw the walker and it immediately became a prized possession akin to Charlie's broken airplane wing I tried to discard last week.. "But that's my favorite! I was going to play with that after rest time!!! Pleeeeease don't throw it away Mommy! Pwweeaasseee..."
Ella has been pretty excited about rediscovering her new "toy" and I am excited about the idea of her walking independently someday. Unfortunately though, it doesn't seem like the walker is doing much for her posture.. I can't help but sing a little every time..
Don't mind the Ninja/Samurai Warrior battle going on in the background..
The Difference Between Boys & Girls
For the past almost 7 years I have been raising boys.
Rough and tumble boys.. loud boys.. jumping off the couch boys..
Monster truck loving, tackle football playing, wresting boys..
dirty boys,
Ninja & Samurai warrior before bedtime boys,
boys whose holes-in-the-knees mending pile looked like this yesterday.
(Plus one pair that Nolan ripped a hole in during church after this picture was taken. Yes church.
What the heck were you doing in church that you ripped a hole in your knee???)
Our house is filled with every kind of pick-up truck, monster truck, tractor, car, and remote control car you can think of. But it hasn't always been that way.. See, when Nolan was a baby I was a new parent who obviously had every solution to life's toughest parenting dilemmas.. I made sure he was developing into his own unique personality instead of boxing him into what boys are "supposed" to like by supplying him with not only trucks and tractors and footballs, but also dolls and strollers and kitchen sets. And I knew if/when I had a girl I wouldn't only buy her princess fairy costumes and tea sets and paint her nails every week, but allow her to wrestle and tackle and play in the mud. I was confident that if our kids didn't know what they were "supposed" to play with they would be much more likely to develop into well-rounded, successful human beings with a broad range of interests. I was confident our girls would like tractors just as much as boys are "supposed to" and our boys would like dolls just as much as girls are "supposed to."
Boy was I wrong..
Well.. partly. The boys did enjoy playing with dolls and strollers. That is.. derbying with them. At a very young ago they would each take a doll and stroller, start at opposite ends of the house and run as fast as they could toward each other, resulting in a fantastical crash of doll and stroller parts flying like torpedoes while elated little boys giggled with delight, only to rush back to their starting positions to do it all over again. And while Charlie's favorite color is still pink (Nolan's was too until Kindergarten when he must have learned it wasn't cool.. See? It partly worked..) there is definitely something to be said about "boys being boys."
And then along came Ella. At that point I was so used to boys I didn't give much thought to a girl being any different, especially being raised in a "boy" home. For a long time she has been content to play with pretty neutral baby toys. She'll zoom cars around every once in awhile with the boys, but most of her toys are still balls and blocks and noisemakers.. Until recently. Ella has taken a liking.. okay an obsession to baby dolls. I didn't think much of it at first as both boys went through a very short phase of liking a baby (before crashing it to its demise). I thought maybe she too would play with it for awhile, then move on.
Wrong again.
Ella will spend all afternoon crawling around with her baby (Well, she used to only have 1. Since Christmas she now has 5..), taking its clothes on and off (okay.. making us take it clothes on and off), feeding it a bottle, hugging it, tickling its tummy and giving it kisses, or making the babies kiss each other. It seriously blows my mind. The boys never did anything like that. How does she even know what a baby is?? I know she is 2 years old, but in a lot of ways her development is more like a 9 month old or so. So how does she know? How does she know to like babies and feed them bottles (she hasn't even had a bottle herself for many months..)? How does she know to kiss them and hug them? Where does this naturally loving sense of maternalness come from? Certainly not from this home..
I am amazed by her and enjoying this "girly" stage in our lives just a little bit. Oh, and I'm only hoping for one thing.. That her obsession and loving nature with babies continues. For many months. Or at least until August... when she becomes a big sister! :)