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!
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