..30 seconds.

Thirty seconds...it doesn't seem like a long time, right?  But thirty seconds can feel like an eternity depending on the situation.  Driving home from a family trip in Gatlinburg this past weekend Chad, Bebe and I were all singing & dancing to music.  We were acting like the silly family we are.  We try to savor the times we have together and really enjoy each other.  Par for the course, I suppose.  We grabbed some Starbucks on our way out of town & hopped up on the interstate.  I hadn't even taken the green stopper stick out of my coffee when we heard a familiar short scream.  It is almost an abridged screaming cry and when I hear it, my heart & lungs generally stop functioning.  That quick scream quickly turned into a gargled clicking sound.  Chad could see Bebe first as he wheeled around in his seat & I could see the fear overtake his eyes as he's looked at her & yelled out "Oh God, she's having a seizure."  In the literal millisecond that it took me to turn around, I started seeing her spitting up blood as her sweet body convulse.  Beyond that, I'll be honest, my heart really can't describe the rest of what I saw and I am sure no one is really interested in the details.  I do remember yelling at Chad to pull over & call 9-1-1 now.  Even though it had been almost 2 full years since her last seizure, this was not the first time we had watched her have a seizure.  But, the blood out of her mouth changed everything.  I did not know where the blood was coming from and the gargling made me quite concerned that she may be aspirating and that made me very fearful very quickly.  Chad quickly pulled to the shoulder of the interstate atop an overpass.  I was almost in the backseat from the inside before we even came to a stop.  Cars continued to wiz past, funny enough, as if their lives were not standing still like ours.  Thirty seconds....for a solid thirty seconds, I panicked.  My heart immediately ran down the list of "what if's".  There was that instantaneous moment of "am I watching my child die" that entered my brain and I tried to function amidst the chaos of emotions raging inside me.  Intellectually and apart from the moment, I fully understand that seizures themselves are normally pretty benign in nature, especially short ones.  But emotionally, in that moment, I felt like I was watching my child die.  In fact, watching my child on respirators and crazy machines in the past, I actually can not think of anything more difficult to watch than to watch my child seize.  My "flesh" was in total control----or out of control, I guess I should say.  My emotions were driving me & nothing else in the entire world mattered.  I snatched Bebe from her car seat, laid her down in my seat & gave her the Diastat in probably 5 seconds total.  I picked her back up & held her close to my body...pacing the emergency lane of an interstate clustered with cars, trucks, SUVs and 18 wheelers flying past.  This is where the 30 seconds began to calm...yes, B was still seizing, but "my flesh" finally gave way to the Peace of the Lord.  That 30 seconds had been horrible.  The feeling of panic & overwhelming fear & complete lack of control.  But, the Peace of the Lord came & I could feel myself relax.  I continued to pace, which seemed scary before --- but then I realized that onlooking vehicles saw me holding a small child & they parted like the Red Sea.  I started praying for our safety as I knew we were not in a safe location & had made an instant & emotion based decision to stop at a dangerous location.  I remember looking over the side of the overpass as I paced and spoke to Bebe.  For those that know me well know I am literally petrified of heights.  I almost chuckled when I looked over thinking how the word petrified really pales in comparison to what I had felt during those 30 seconds.  I wasn't even afraid of being on the side of a busy interstate, holding my seizing child, pacing atop an overpass.  I wasn't afraid anymore at all.  It was about this point when I realized it was literally freezing outside & that both Bebe & I needed to get back inside the vehicle.  Emergency workers arrived & transported us to the hospital.  On the trip to the hospital, the EMT said "I knew when we arrived that she probably had a history & some really strong parents for that matter, you were so calm."  In my head I thought, "Calm, really?  Glad you didn't catch the first 30 seconds, dude, you would have thought I was crazy."  It was an ordeal, an ordeal with a happy ending.  B is fine, she severely bit down on the inside of her upper lip which swelled up to about 3 times its normal size & she dislodged a tooth that they pushed back in place for now.  They increased her daily seizure medication (medication that we had planned on weening her off of since she had gone so long without a seizure----guess not).  In the big picture, I guess 30 seconds of sheer terror is not really a big deal.  Chad, being the amazing man he is, said "they always say she doesn't remember any of this stuff"...to which I softly responded "but unfortunately we do."  I hate that I still have the mental image & I am thankful that I have a terrible time of remembering things.  I pray that the mental image will fade & it won't stop my heart anymore when it comes to mind.  On our way home, Chad & I discussed how we were thankful for so much during the process.  I was so grateful that our family was not together---it is hard enough for us to watch..I would not wish for anyone to have to watch her go through this.  We recounted how thankful we are that this is not our everyday life.  This is not our normal, and unfortunately I know it is for other families.  My heart hurts for them & I am amazed by them all at the same time.  Chad & I also discussed what a hand God had on us that day.  I had literally put her diaper bag (the bag that I almost forgot at home at the first of the weekend---the bag that we didn't really need for the trip home so almost got packed amongst the chaos of our back seat/cargo area---the same bag containing her Diastat) literally within reach of where I was & where she was.  Also, in the great distance between Gatlinburg & home, there is a vast interstate of rural America.  In the several hours of road, I think there may be 1 - 2 hospitals that would be really understanding of Bebe & our situation.  That ambulance ride I told you about, yeah it was literally 10 minutes from where she had her seizure to East Tennessee Children's Hospital in Knoxville.  So, we were in just the right place.  Because when I get outside of those first 30 seconds, the Lord reminds me that He has everything under control.  He goes before us, and behind us, and beside us and with us.  I hope there never is a next time, but if there is----I pray that I will get my "I think I have some semblance of control in life & so I am going to take all of the weight of this situation on my shoulders & so I am going to completely flip out" time down from 30 seconds.  I know I am human & I fully own that.  I am thankful that the Lord is willing to forgive me for my extremely selfish 30 seconds when I thought I could handle it on my own.  MAN, oh MAN, does it lift the burden when I take something off my own shoulders & give it back to the Lord.  I have said before, Chad & I don't ever really wonder "why us".  At the end of the day, the truth is that we don't have any control here.  We always pray for B's complete healing.  And we know with every ounce of our souls that God is able to do that. Even still, we want our child to be exactly WHO God created her to be.  And most of all, we pray that her life touches people and points them to God.  She is a miracle---every single day.  She is an absolute miracle.  And we choose to look at our situation as an opportunity to shine the light of Jesus.  We are so grateful that the Lord gave her to us, just the way she is.

  

 

All ready for the zoo. 

Looking quite adorable in her cute little scarf.

Earlier in the weekend, the pure zeal for life she has is infectious!

Finally waking up after the ordeal & still smiling with her sweet lil swollen lip.

She was all "crooked smiles" with her swollen lip. She is more resilient than her parents, that's for dang sure.

..here we come, four!

As I begin to write this, we are within days of our little Bebe turning four.  Four years ago, today, I pretty much only knew I was almost 37 weeks pregnant.  Looking back, I still think I knew something was different earlier.  I think there was a part of me that knew this would be our journey far before Bebe....even far before I met my husband.  I believe the Lord was preparing me years and years in advance.  I will never know if it really made me any more "ready".  It is funny how four years can change a person so deeply.  I see how far our little munchkin has come, how much she has achieved, how many milestones she has accomplished.  She is amazing.  I am so proud of her. 

I talk a lot of facts & achievements & goals & accomplishments on here.....but today, I feel like I just need to talk a bit more about emotion.  I guess I am just extra emotional today, so bear with me. 

If I am being transparent, I feel a bit at times like I have multiple personalities: 

There are these moments at home, when life seems "normal".  It is normal for me to have to monitor what she is doing to ensure she is not hurting herself or has not gotten stuck/wedged/etc somewhere.  It is normal to have limited communication, making my lack of ESP very apparent.  It is normal to have to either fight a lil octopus or dress a limp doll-like human to put her clothes on every day.  It is normal to constantly be making sure she isn't near stairs since she has not quite learned how to navigate them yet.  It is normal to stop every 2-3 hours to prepare food, feed her food & clean up afterwards.  It is normal to have to hold myself down in the seat as she explores and plays outside, petrified that she will hurt herself, but also knowing she has to build independence & self confidence.  I actually like "normal".  It is still tiring at times, but hey what mom isn't tired, right?  Normal far outnumbers the other days, thankfully.

Then there are those days like recently preparing for K4.  I looked in the classroom & saw "big kids" doing all sort of "big kid" activities.  The tasks and daily play even seemed quite beyond B's achievements and accomplishments and understanding thus far.  And I must be honest, my heart sinks a bit on those days.  I look at these average kids, not with jealousy, but with a bit of pain in my heart.  My heart continues to mend from that ever-decreasing ache deep within that mourns the loss of dreams.  I watch these potty trained, agile, communicatory, self-feeding, rule following (well, you know----they at least understand rules at least), rowdy kids.....and then I think of my perfect and tiny baby girl.  Those days don't feel "normal", they hurt.  No one can change these things, it is what it is....but it doesn't change the fact that it hurts a little.  It, in NO way, discounts the AMAZING things Bebe has overcome.  She is amazing.  This is my heart that hurts, not hers.  And it is a secret pain, one of which I guard closer than even the closest to me may ever fully understand.  I used to beat myself up over these painful days, but I realize it is okay to feel---even the hurt. 

There are days when I see other children who may have the same or similar diagnosis as B.  And I see how great she really is doing.  I get to experience things with her that some other parents would love to get to experience.  Although Bebe is still working on her communication, she definitely engages & interacts & is really present a lot of the time.  I know some other parents would love a window into their child's emotions or personality.  I get to see (and chase) B walk & now even her recently learned run.  I get to hear her make more and more sounds & have every hope that one day she will be speaking.  I get to use at least some words to communicate by sign language.  So, Bebe gets some sort of a voice in life.  There are so many other children that literally have no method of communication.  Yes, I feel like 1/2 my life is preparing, feeding & cleaning as it pertains to her food.....but I get to see my kiddo eat, and love to eat at that.  I try to remember it is one-on-one face time with her & it is normally just she & I.  How many moms get that much focused attention for that long?  Right?  Those are my thankful days.  I am thankful for where we are in this journey & where God has us today. 

Then, probably the most multi-faceted days of all...days that have seemed to happen all too often as of late.  It seems like there was this small wave of kids with WHS who "earned their wings" as many in the community calls it.  I got in this mind-set recently that I could emotionally detach myself from the lost lives by simply making a ridiculous theory.  "Well, it seems like only the really sickly kids pass away so young."  It only took the face of one little girl, able to bear weight on her feet at a young age, apparently not having a significantly 'sickly' history passing away to blow that idea right out of my head.  Some days........(deep breath).......some days hurt so deeply I literally can not express words.  Some days it feels like the depth of that pain is so close that it is squeezing my heart to where it can not beat.  Some days the thought of that possibility takes my very breath away.  It isn't fear, it isn't "what if", I don't really know how to explain it.  It just feels like it could be so real, so quickly......it is hard to even verbalize.  But to say "my heart breaks" almost feels blasphemous to how deeply it hurts.  Those days I would call horror days.  I am humbled that I still have her, I am grateful & I hug a little longer, snuggle a little closer, love a little deeper and show a lot more grace/mercy.  Because there are these snapshot moments in my brain & even more in my heart that "what if today is it....."  I have told the story, and honestly I can not remember if I told it on here before, I apologize if I am repeating myself.  B had a febrile seizure (due to a spiking temperature) almost 1.5 years ago.  It was her very first seizure and I was calmly concerned.  We knew seizures were possible, but thought since she had made it past 2 years old without one, we were in the clear.  About a week later, Bebe had an unrelated non-febrile seizure.  I remember that trip to the hospital was completely different.  She seized the entire ambulance ride there...and I felt myself in a very different place with this round of seizures.  Once we arrived at the hospital, she started actively seizing again---after they had already given her a ton of medication.  I am usually the stoic and calm one.  I handle very stressful situations fairly well.  I usually am the phone caller to the grandparents to advise what is going on, because I am the one who can speak clearly & calmly (years of practice with working in the ER/Trauma unit & customer service, I guess).  But that night was different.  I can safely say, it was my very first face-to-face moment with the most frightening prognosis possibility of this syndrome.  I just remember after they asked us to step out of the way to take care of her, I crumpled down in the hallway outside her door.  I remember the chaos going on in her room & her teeny body convulsing.  In that moment I wanted to take away her pain, but even more than that my heart cried out to the Lord and begged Him not to take her....that I wasn't ready & I could not bear the weight of it.  I couldn't even utter words to Chad, let alone call our parents to tell them.  That night I was more than scared, I was more than frightened, I was utterly petrified to the core of my soul.  I try to not ever relive that night in my head.  Bebe got better, her seizures were regulated & she has been great ever since (thank you, Lord!).  But, I saw that night (and every time I let my heart get off it's leash) how desperately broken the even mere thought was.  Even to the point that I have had to take several breaks from social media because I simply can not be inundated with the reality of other beautiful, amazing, precious kiddos passing away.  I can't face that deep dark black hole of pain in my heart.  I am thankful that these days are the most rare.  However, the conscience & active desire to enjoy every moment I have with her seems to occur every day.  She will shine that cheesy grin at me & my heart melts.  And it makes me want to take tiny little pictures in my heart & never ever ever ever forget all these perfect moments.  I am thankful that these days are few & far between, but with the recent influx in lost lives....it has been more days than usual.  But, I choose not to live in fear. 

I savor and appreciate those normal days.  Normal is absolutely wonderful.  Blessed days are great, too.  They make me feel a little guilty sometimes, but I remember that God has written a beautiful & unique story for each of His special ones.  And I am thankful for their accomplishments & achievements & strengths.  And on the painful ones & the horror days, well those are the days when I need a little more Grace from the One Who created her and from the people around me. 

I am so grateful the Lord gave Bebe to us.  And I try to always remember that even if today were the last day with her...I am thankful for today, then.  But MAN am I going to live up tomorrow with her, too.  I can't wait to see what all your Creator has written for you, sweet daughter.  You are mighty and you were created for greatness.  Bebe, you are my beauty, you are my heart, you are my hero, you are my greatest treasure, you are my perfect daughter.  I love you, my lil McShooguhnut / Monkey / Bug / Bugguh / Buhbuh / Bebe!