Snuggles & Dragons

I’ve been busy working on the YMCA stuff along with the daily life of multiple children so blogging has taken a back seat.

I must admit I’ve also been avoiding putting down how I’ve been feeling until I can pinpoint the “why” and “cause” of it.

I’ve been lonely for Larkin

School has her for the majority of her day and when she gets home she is tired and ready to chill.  We hang out a tiny bit but Larkin really wants to be left alone and not touched so I try to respect that

Larkin does not seek attention the majority of the time unless she is looking for you to sing a song with her.  She also does not seek affection and typically doesn’t want it at all in the ways that most of the world defines and understands affection

No hugs, kisses, cuddles (unless she is sick or you are singing & giving her deep pressure massage) or the variety of ways that child/parent can exchange affection.  Larkin prefers to have her palms lightly scratched in the same way I did it all those long nights in hospital when I couldn’t hold her.  She prefers deep pressure input on her limbs or me to sing songs in a funny way

As a baby and up until about age 4 I could hold her and snuggle her but now she is a girl on the move just as she should be at age 6 which is more typical than not.  She doesn’t want any part of us, and if you get into bed next to her chances are she will move over or leave the room depending on her mood

She tolerates me more than anyone else but it’s because she knows I won’t bother her but if I do I get the same treatment

Larkin was home sick the other day from school so I took the twins into their drop off program and spent the morning with just her.  She played at my feet off and on and moved in and out of the kitchen as I worked.  Music was playing softly for her and she would babble her soft noises, which made everything seem like old times

The memories of days with just her led me down the path of days with only Sixteen when he was tiny.  The twins have always been 2 obviously but I’ve had my time with just one or the other

But there is always some form of communication of affection from the other 3 with an “l love you” or blowing kisses and it’s difficult on the heart when you have one that simply can’t do that and doesn’t want to

Parents of children who have Autism or another type of delay in expressive language understand what I am feeling

Parents of teenagers know what I am feeling except even teenagers are showing something when they hate on you.  Plus you have the comfort of knowing one day they will once again come around and realize they don’t know everything and their love is still there down deep

I’m lonesome for that expressive love connection that I have with my other kids

Yes yes I know ~ please don’t comment that we have a different love connection and to embrace it and blah blah yada yada ~ I GET THAT ~ what I am feeling today is loss and that is perfectly fine

Loss is where it all leads for today’s ramblings and I am perfectly fine with what and how I am feeling

Tomorrow will be another day to put my feet on the ground and one in front of the other

Yesterday, Larkin had an outpatient EEG done at St Louis Children’s Hospital and her last one was as an inpatient in 2009 where we determined she was “stable”

She hasn’t felt well for 2 days and won’t eat but we have had this appointment for a year and we simply will not miss it unless she can’t sit upright.  We visited with her amazing Doc first and caught him up on all things Larkin and then we left with paperwork for lab draws and headed to admitting for the EEG process

The EEG had not been scheduled even though I had confirmed that back in September but things happen and now we had to wait for a couple of hours to get her in.  I took her back up to the lab to get the blood draw done and walked back to the parking deck because I had forgotten her medication in the car

Hanging out in a children’s hospital will humble you in all ways so I was counting my blessings as Larkin sat with me in the cafeteria.  She was stable overall and even though not feeling great, she is doing better than a lot of other situations that were around us

I held Larkin on the bed as the EEG tech started to put probes on her and when I say held her I mean I was wrapped around her like an anaconda and holding her chin to keep her head still as she fought me like a linebacker.   This simply wasn’t going to work

Enter the veteran nurse.  All departments have them and I for one love them to pieces because they know exactly what to do and how fast to do it.  Larkin was quickly and peacefully wrapped like a mummy in a sheet and quieted down as the tech went back to work attaching probes

I was amazed.  I had brought in a Sesame Street DVD so I started that and she watched Elmo and only had the occasional fit as the tech worked

The inpatient EEG differed from the outpatient in that the screen showing the EEG was in the room with us this time ~ and that my friends is where all the trouble in River City began

Larkin actually drifted off to sleep as the scan began and that was no small miracle because for an EEG to truly be effective they want to see the brain in sleep mode but Larkin doesn’t nap anymore and with Elmo on I figured she would be wide awake but as usual we are on Larkin mode and slowly her eyes shut

My girl sleeping so peacefully her skin so soft and fair.  Her hair askew with all the probes glued all over her head couldn’t interrupt the absolute beauty and charm she exudes when she is truly at rest

Soft and warm my baby was snuggled up and my glance moved to the EEG screen and I froze

I froze and my stomach clenched in fear as I watched the chaos on the screen along with spikes and waves of epileptic activity

Looking back at the beauty resting snuggled warm

To the screen

I lost it and as the tears began to fall I leaned over into a wracking sob I simply couldn’t control or wished to

I’ve written before how much I hate sonogram rooms and this room was no different.  Quiet, dark, machines humming, and bad news sprayed out in front of me, with no safety net to stop the train of grief

Beauty resting snuggled warm

Chaos ruling on the screen

These moments are sacred.  I think most people think sacred moments are mostly happy times but these, for most parents who deal with the unknowns, are sacred for us because we can grieve without shame, holding back, or fear.  We sob for what is lost, what we thought might be healing, dreams, and our little loves resting snuggled up warm while we feel the ice cold fingers of reality

I saw Epilepsy where I thought I would see calm.  I saw Epilepsy and chaos that deceived me because it is hidden from my view and I felt the anger, rage, frustration, and fear come into my blood or I should say back into my blood because I’ve been the content mode of not knowing since 2009

I wasn’t prepared for what I saw and as the poor tech came in to take the probes off she kept telling me how sorry she was.  She said, “I can tell you are an amazing parent and this is so hard to watch you feel so helpless”

She knew my rage and she knew my fear because she sees thousands of me in a year at this hospital.  She sees thousands of Larkin’s a year and she told me that it never gets any easier and she gets very attached to some of her patients

I wheeled Larkin out to the car and the tears just wouldn’t stop.  Driving home I didn’t feel like talking to anyone and just let the miles fly beneath us as I processed what had just happened

After talking with Larkin’s Doc today I realize that basically nothing happened except now I know the dragons are still inside her brain and doing their damage but her doctor gently reminded me that I couldn’t chase the dragons of spikes and waves on that EEG

There is something to be said for ignorance being bliss but I’m pretty sure that those who know me ~ know I am not one for turning a blind eye and pretending life is so pretty and putting on a fake face.  I own the knowledge

I have to focus on Larkin as she is globally in development  ~ aware that the dragons are there but that in the background Larkin’s brain is holding it’s own for now and when she is awake there is some calm in that background that keeps the clinical quiet and we don’t see seizures.  THAT is what is most important

Epilepsy is a part of our lives and will forever be.  Larkin will never have a clean EEG and for now she remains on medication

Somewhere in my heart and mind I let the dream of healing and magic words spoken own me ~  Now that I own the knowledge I understand that will never be but for today …..

I cuddle with a little girl who isn’t feeling well so she lets me, and my lonely for her slips away as beauty rests against me snuggled warm

I embrace her greatness and am thankful for my family

I own this story that is ours and while I can’t control the ending I can fill it with quality stuff and doodle happy faces and flowers in the margin and maybe me killing a few dragons here and there ~ hey a girls gotta have her dream

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