Wednesday, January 30, 2013

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..

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... ( - :

Thursday, January 24, 2013

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.

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.

Thursday, January 17, 2013

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..

Don't mind the Ninja/Samurai Warrior battle going on in the background..

Monday, January 14, 2013

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! :)

Friday, January 11, 2013

The Fateful Photo Shoot

A few months ago I got a phone call.. It was from a local-ish CdLS mom who for the first time, was getting connected with other families who have kids with CdLS. Because of a doctor's advice to NOT join any CdLS groups because of her son's very mild case (completely ludacrous in my opinion..), this was the first time she was getting the support she needed. We were talking and she was telling me her story.. when they knew something wasn't typical with her son, how he was diagnosed, what his symptoms were, where his development was and suddenly she said something that struck a chord with me. It was simple and subtle and I didn't even have a chance to comment on it but I haven't been able to stop thinking about it. She was talking about how when her son was a baby she had a feeling something wasn't right, but everyone kept reassuring her everything was fine (sound familiar??). She said that it was weird because she just couldn't get a good photo of him.

She kept on talking I'm sure, but for a moment my entire world just stopped there. Absolutely still. A flood of memories and images came rushing back to me. You see.. the exact same thing happened to me. It was a combination of months of feeling I couldn't quite capture Ella's essence on my camera, mixed with idealistic expectations, that all came together one fateful night. One night that became the very first time I realized something really might be different about Ella. The first night I felt myself admitting it. The first night I really broke down..

Here is the story.

After Ella was born I decided I wanted to do some cute newborn pictures with her. You know.. the adorable pictures of day old squishy babies sleeping with their little crocheted sock monkey hats, piled on top of blankets or curled in an old wash tub, with their pudgy wrinkly cheeks smushed up against their tiny balled fist... yeah those. They weren't really a big thing when my boys were little (or maybe they were and I was just out of the loop.. good possibility. We didn't even have Internet at that time..) so I wanted to make sure I did it right this time around. I mean.. that's what good moms do, right? They get fantastic pictures of their children's most adorable moments.

Not that I was going to pay someone to do them.. Heaven's no. I took photo classes in college. I take pictures for families every once in awhile. And they pay me. I kindof know what I'm doing.. (Don't tell my paying customers I said that.) No, I would do them myself. Well, with Ella being born 3 weeks early, then failure to thrive, add on RSV at 2 1/2 weeks old, intubated for 10 days, and hospitalized for 3 weeks.. our newborn pics didn't really get done on time. But I still wanted to try. I was determined. My husband calls it stubborn.. I prefer 'persistent'. So one night after the boys went to bed, I took the space heater up to our bedroom, made it toasty warm, hung up a backdrop, turned on some lighting, created a makeshift light diffuser out of a container lid and aluminum foil and stripped the little munchkin down.

It didn't go like I planned.

The whole night was a disaster.. The lighting wasn't right. My pictures were blurry without a flash, but with a flash way too bright and one-dimentional. She wouldn't lay the way I wanted her to and only was content if she had her almost-as-big-as-my-face-paci stuck in her mouth. I tried different angles, different lights, different positions.. Nothing worked.

I was frustrated.

I was frustrated with the lighting. I was frustrated with my setting. I was frustrated with Ella's uncooperation. I was frustrated that I couldn't get a good picture. But I was mostly frustrated that I was beginning to realize deep in my heart why I couldn't get a "good" picture. And it had nothing to do with the lighting, or the backdrop, my mediocor photography skills, or that darn pacifier. I couldn't get a "good" picture because something about Ella just didn't look right. Something was different. Something just wasn't like those typical squishy baby portraits.

This was the first time in her life she looked "different" to me. We didn't have a diagnosis yet of CdLS. We had been told there "might be something going on" but we didn't know what. And I was clinging to the hope that there wasn't. There just couldn't be something wrong with my baby girl. So what that she was gaining weight slowly. So what that she had a lot of hair. And her eyelids were a little droopy. I didn't care that her head size was a little small. She was FINE. Up until that night of the picture catastropy I didn't really see any of those things when I looked at her. Call it pure love. Call it denial. Call it whatever you want.. That was the only way I could deal with life right then.

These emotions and memories all came rushing back to me as my new friend spoke and in that moment I wished I could reach out across the phone wires and give her a long hug. We were strangers, brought together merely through the similar rare genetic makeup of our children, yet from a hundred miles away I could feel the pain she felt, I could sense her frustration of years gone by. I could understand her disappointment. Because her pain, her frustration, her disappointment.. it was mine too.

I suppose this post doesn't really have a purpose.. I'm not ending it with some life-altering lesson I learned or a golden nugget of advice to carry you through a hard day. It's just a glimpse into a part of my journey. Of Ella's and my journey together.  Up until this point I hadn't considered that maybe someone else out there is having a similar experience, struggling with the same toxic mix of hope and acceptance and failed expectations and looking for someone to tell them it's okay. That it's okay to have those feelings and it's okay to be angry and it's okay to more than anything not want your child to be the way they are. It strengthens my desire to reach out to others and while being completely, brutally honest here, help begin the healing process of someone's heart.

As I look back on that day I am utterly amazed at how far Ella and I have come together. And I want to share our story with as many people as possible.. not because I want to be a hugely successful, world wide known blog (quite the opposite!) or because I want more glory and attention on myself (once again.. quite the opposite!) I merely want our story to help someone. Another blogger did it for me and I would be beyond honored to be that glimmer of hope in someone's life. If Ella and I's story can impact just one person's life, then writing this sometimes scary and painful blog will not have been for nothing.

So thank you to the many of you who have shared my blog with friends, a stranger, a co-worker, through Facebook.. I am honored you think it worthy of admitting you actually know me.. :) And I encourage you to continue. Please.. if you think someone out there could benefit from reading my too -often hastily strung together, yet honest and raw words, than feel free to share with them. I would be honored.

Tuesday, January 8, 2013

all good things must come to an end

I've been a terrible blogger lately.

And I'm not even going to apologize.

I've also been a terrible housekeeper, awful grocery shopper, and pretty horrendous cook (in fact.. my dear husband told me last night that our supper tasted like Catholic communion hosts... Now, we're all about the Body of Christ around here, but somehow I just don't think that was a compliment...)

And I'm not apologizing for any of those either.

Why? Because I was hoping that for the past few weeks, at the end of the day, if nothing more my kids and I could say I was a good and fun mom. See.. we were on Christmas break. And sometimes spending long afternoons cuddled on the couch, snuggling with my boys, reading about the adventures of Jack and Annie in their Magic Tree House and smiling as they pleaded for "just one more, Mommy," Not one more page, or one more chapter.. one more entire book, :) is more important than writing a fabulous blog post for the day. And sometimes (okay.. ALWAYS) bundling in 10 layers of winter gear to go sledding in the backyard with the boys during Ella's nap time is way more exciting than doing the dishes. And even though there are piles of laundry (clean and dirty) threatening to take over our house at any moment, what does one more game of UNO or deer hunting hurt? (In deer hunting, the boys pretend to be deer and I get to shoot them with Nerf guns.. it's pretty much a win-win.)

But yesterday was back to school. And we started it out with a bang. Driving Nolan 25 miles round trip to school, then rushing home to give Ella a quick breakfast, taking off again to drive Charlie 17 miles in the opposite direction to his school, loading Ella up again for a "quick" trip to Target before our IFSP meeting, which was apparently not quick enough since we showed up 10 minutes late to the meeting that I already had to have everyone reschedule at the last minute after I realized I double booked it and Ella's 2 year check up for the same date, same time, in cities almost an hour apart. (Yes.. we drive a lot..) Oops. I did and will apologize for that one.. Sorry!

Goodbye days of lounging in our pajamas all day... I miss you already! *Sigh.

But back to the IFSP.. I know these kind of meetings can be hard. I know they can be emotionally draining. I know it can be difficult to be forced to confront goals your child has not met, additional services they may need, and sometimes having to fight tooth and nail to get those services. I am thankful that we have a wonderful group of therapists and coordinators who I really feel have Ella's best interests at heart. I feel fortunate to have never had a bad experience with them and love that they do a great job of focusing on the goals Ella has met and how far she's come.

But yesterday? They didn't really need to say much. Ella pretty much told the story by herself.

We started out addressing the not-so-long ago goals of Ella eating more foods orally, different textures and temperatures, drinking more fluids, and getting rid of the NG tube. Meanwhile, Ella sat on my lap, devouring an entire NutraGrain bar and a bag of fruit snacks, all the while taking ample swigs from my jug of iced lemon water. When we talked about her ability to learn sign language, she was fluently asking for "more" food, a "drink" when she was thirsty, and signaling "all done" when her food supply had woefully run out. As we moved on to social interaction, Ella showed off by waving and smiling at the therapists, knowing exactly how to get and hold their attention, and while we were discussing the old PT goals of Ella being able to move across the room 10 feet, she was crawling on all fours around our chairs, exploring all the exciting new toys this room had to offer, such as the ever-enticing outlet boxes and electrical cords.. As we observed a previous goal of being able to choose between 2 different objects, Ella was digging in the diaper bag, pulling out a pair of boots, kicking her shoes off and holding her foot up for me to place them on. And finally, as we examined her cognitive skills, Ella was feeding her baby a bottle, giving her kisses, and ticking the baby's tummy, then showing us her own tummy.

Check, check, check and double check. I'd say she's made some progress.

I am so happy with how far she's come and I am beyond excited for her to meet her next goals.. Walking across the room unassisted, getting into a standing position from the floor, saying 5 words (that was actually an unmet goal from last time that carried over :( ) and adding 5 more signs (she currently does about 6).

And while I am not one to wish away my todays in anticipation of the wishful prospect of an "easier," albeit distant future.. the past few mornings as I've listened to my alarm clock shrieking in pain at the indignity of being set before dawn , grudgingly left the warmth of my cozy bed for the bitter cold of a Nebraska winter, and exchanged "real" clothes for my oh-so-comfy pajamas, I can only think..  there may or may not be 129 days until Summer Vacation.. Just sayin'.

Sunday, January 6, 2013

celebrating 2 years

happy birthday to our sweet little Ella girl. 
you are perfectly and wonderfully made. 

Music: Blessings by Laura Story

This video expresses pretty amazingly how this day makes me feel. We love you Ella!