Overwhelmed...

Yesterday morning I sat and held our Ellie bug and was completely overwhelmed.  Not by the fact that she’s not letting us sleep (for the 12^th straight night) or the fact that we’re realizing that there may be more hurdles ahead of her than we thought there were last week… but overwhelmed with how beautiful and wonderful she is.  She’s soft… like, impossibly soft.  I know all babies are soft… but there is something so much silkier and squishier about her skin.  Her pale skin (sorry, babe… that’s Mommy’s fault) is flawless.  Her strawberry blonde lashes are perfectly spaced and curl up slightly.  Her eyes are bright and she focuses on my face and follows my every move (I may or may not have been dancing ridiculously at this time).  Her little lips have that pretty bell shape as she’s relaxed.  She’s just… perfect! 

See... PERFECT!  She has the prettiest little fingers and nails.  And they're so tiny.

When we take her places, we’re often asked about her feeding tube.  No worries – I have no problem explaining it to strangers.  We went out to dinner for my birthday and our hostess just said, “Oh, poor baby”.  Yes… at times, I feel awful for the little bug… but at the same time, I hope that strangers are looking past the tube and seeing our sweet girl.  I know this is a high order – how many times have I seen someone being lifted into their van in a wheelchair and not really looked at that person’s face?  I, myself have a hard time looking past what’s different sometimes unless it’s someone I know.  Hmmm… I’m a bad stranger.  Noted… I’ll do my best to not be that person moving forward.  (And know that I am in NO WAY equating a feeding tube to a wheelchair here - not in the least.)

Our family was adjusted Monday by Dr. Josh Steinke and as he adjusted Ellie, he said, “She’s so delicate.  I’ve adjusted a lot of babies and kids, but she’s different… she’s just so delicate.”  Aha!  That’s the word I’ve been looking for.  She is very delicate, indeed.  She’s soft and warm (usually sweaty)… and squishy.  She’s also ornery and a little spunky.  She’s everything that a little girl should be and for that, I’m so thankful. 

Our beautiful little bug.  For anyone who maybe missed the FB post about her tube last week... she was showing off during occupational therapy and pulled her tube out.  We had to go and get it put back in - which is why it's on her right side now.

I came across a quote this week that read, “What if I fall?  Oh, but darling… what if you fly?”  I want to post that up all over the house… for Ellie, for me, for the boys… for guests.  I don’t know why it spoke to me so much today, but it did.  I think we all battle this… we all worry (in our own way and reason) that we’re going to fall, falter and fail.  It’s a legitimate fear – failure is pretty common.  But what happens if we take the chance at something great (knowing it comes with great risk) and fly?  Oh, what wonderful motivation, right?  I worry every day that I’m not doing enough… for real, I admit that.  I sometimes worry that by putting myself out here, that people will think I’m needy or attention-hungry.  So be it.  In the end, I know that I’m doing the best that I can every day and I pray that by putting myself out here and sharing the ups and downs of our journey, that someone else out there will feel less like an island.  That someone else can relate and feel peace.  

I remember being pregnant with Lance and knowing that the birth experience would be painful… but not REALLY knowing.  My mom said, “Just know that this is the most physically painful thing you will ever do… and it’ll live up to that expectation.  But also know that there are a lot of people in this hospital who are in a lot of pain – you get to bring a baby home after your pain.”  Touché.  And I remember bringing Kaleb home and being completely and utterly overwhelmed with 2 monsters in the house.  He was about 3 weeks old and I went out with friends.  I felt like a mess, but tried to hold it together.  A close friend said, “It’s really hard, isn’t it – bringing that second one home?”  YES!  It was.  She also said, “Give it a month… you’ll get into your routine and you’ll be okay.  You’ll have a new normal and it’ll be wonderful.”  Why didn’t anyone else say that?  I suddenly felt like someone got how I felt and even though it didn’t change things on the home front, it somehow made it all seem normal.  I’ve needed these people in my life… the ones that are real and blunt… the ones that don’t sugar coat things, but also have encouragement in their words.  The ones that let me realize the feelings that I had without making me feel inadequate or weak.  That, I guess, is what I hope this story can be for someone else.  I initially started this blog to keep people up-to-date on our little bug, but found myself unloading on it, too.  Not for pity, for crying out loud, I don’t need that!!  I think it’s true for everyone, though… that when you share what’s inside of you… what’s raw and emotional and real… that’s when people are able to relate to you and share with you.  It’s what draws us closer together.  I’ve not always been this way – in fact, I was pretty much the opposite for a long time.  But who has time for pride these days, right?

Okay – sorry for that random tangent.  Ha!  I do have a question for you all.  Have any of you had an infant who was afraid of the dark?  It sounds crazy, I know.  But I think this is true for Ellie.  We’re taking her to an audiologist next week because I’m almost certain that she’s not able to hear right now.  Her pediatrician isn’t able to do this testing because the inner ear structure in babies with Down syndrome is much smaller than those of typical kids.  The thought of her not hearing makes me really sad, but we don’t know for certain yet, so I’m trying not to get ahead of myself.  Let’s just say that she doesn’t respond to my voice (like I’d expect her to).  She doesn’t soothe to the sound of music (unless it’s so loud you can feel it in your chest… like at church).  She doesn’t flinch at sudden, loud noises.  Concerning – for sure.  But what I realized yesterday is that the poor bug already can’t hear things… and at night, she can’t see anything in the dark, either.  Soooo… she’s like Helen Keller at night.  [Okay, my inappropriate humor makes me chuckle a little bit there.]  But really, I’m worried about our bug.  Hopefully there is just some blockage that can be drained or removed to fix this issue, and heck, I can sleep with a light on if that helps.  At this point, I’m ready to try anything to help this little one sleep.  She’s been up for 5+ hours at a time at night (upset the whole time) for the past several nights.  She’s been having these night fits every day since 10/18 and they always start between midnight and 3am… so Brandon and I are pretty delirious most days.  If I woke up and couldn’t see or hear, I’d be screaming my head off, too, though.  We tried sleeping with lights on last night – and wouldn’t you know it, the sweet girl slept – like an angel!  This might be a fluke, but I sure hope it isn’t.  I got up for work this morning and felt… alive… for the first time in a few weeks.  Hallelujah!  We've tried a million things to help her sleep already (nasal drops, a suction machine, a swing/vibrating seat, humidifier, swaddling, gripe water... the list goes on).  If lights-on tonight works again, I'll be beyond thrilled that the solution was so simple.  Fingers crossed!

So there may be more obstacles with this hearing situation in the future… maybe.  But for now, I’m still just going to sit and admire how strikingly beautiful and perfect she is.  I couldn’t possibly love her more than I do now, but I thought that last week, too… and I proved myself wrong.