It's Been a Minute

So it has been a minute since I have blogged. Or more like a year. Whatever.

I don't think I was adequately warned about how busy life gets with more than one child.

Seriously though.

There is not enough time for me to shave my legs, let alone spend some quiet time alone writing about life's events.  I'm too busy living them, to be honest.  Any time I sit down alone with my phone or computer in a quiet room with my thoughts , I usually find myself in deep slumber within minutes with the letter "j" or "x" typed a million times on the screen.  Real life.

Being a mom to two littles is exhausting.  I really thought that by the time my youngest was two, I'd be sleeping through the night and enjoying some occasional "me time".  Nope.  As it turns out, my second little is even needier than my special needs child.  She loves her mommy with all of her itty bitty heart, so we are joined at the hip 24/7.  (and I'm not necessarily complaining) And while Jay-man is progressing, kicking butt and taking names, he still needs intervention throughout the night, spoon feeding, medical care, help walking and constant supervision.  Most days I feel like I have twins... two toddlers keeping me busy every minute of every day (and night). It's nuts and life is crazy. Like sitcom crazy, most days.

And oh-so hard. Really, really hard.  I laugh and cry a lot.  I try to laugh.  Sometimes it comes out as more of psychotic laugh, but it still feels better than crying.

But even though things are hard, busy and crazy the best word to describe my current life is---->   

a-m-a-z-i-n-g.

I feel like I'm living a dream life I didn't know was possible.  It doesn't even feel real most days; it's seriously that wonderful.  I'm not talking about our special days, vacation days or days we spend holding hands skipping around the park.  I'm talking about the messy, uneventful, ordinary days.

I have dreamed of ordinary for so so long.  Ordinary is so beautiful.  I can't get enough of snuggles on the couch, PBJ's for lunch, tickle fights on the floor, chasing each other around the kitchen island, and watching the same Disney movie for the 235th time kind of days.  These ordinary days feel special.  Every damn one of them.  I know, I'm crazy.  But when you didn't know if your first child would survive long enough to see early childhood or if you would ever be able to have a second child, EVERY moment becomes priceless.  And I'm not just saying that.  I really mean it.

So while my blog has taken a long, unintentional sabbatical because I have lost myself in mommyhood, don't feel bad for me.  Smile at the thought of me living my best life.  Because I am.

Now that I've addressed the awkwardly long pause in my blogging, let me catch up on this wonderfully crazy life we are living.

Since this is Little J's blog, let's start with him.  This kid continues to blow me away.  He refuses to let his challenges stand in his way of progression, milestone making, or his happiness.  

Jayson just completed his first grade year-- a full day of school five days a week-- at a typical school in a special needs class.  His attendance was shotty at best, but he did it.  WE did it.  He was the lowest functioning student in his class, but he was able to go to school, learn, and progress.  He made friends, learned social skills, can walk the halls and find his seat independently in the classroom.  He is sitting in a TYPICAL chair at a regular desk!!  He isn't strapped down, reclined, elevated or any of that other fancy special needs stuff.  He is sitting at a regular desk all day, and that in itself makes me so proud!  He is beginning to follow directions (God bless his patient teachers) and tolerated (most days) eating in the cafeteria and going to music, PE, and library class.  I consider this year a success.  Not every member of his educational team believes that, but that's a topic for another blogpost, probably when I'm feeling a little more feisty.

Health-wise, J is still up and down.  But can we take a moment to celebrate the fact that it has now been an entire YEAR since Jayson has been inpatient???!!!!!  It feels amazing.  And J had a really rough respiratory season.  He had Influenza A and two other viruses that were even harder on him than the flu, and several other minor illnesses.  Yet he managed to fight them off at home and without scary events.  I am so proud of how far this boy has come.  His biggest demon is still ICP (Intracranial pressure) and headaches.  He has headaches daily and that is his norm.  He endures them without complaint most days and manages to still smile, spin, giggle and play.  But there are some days that the pain wins and we watch him suffer helplessly.  Just when we think we figure out and eliminate a trigger that makes the head pain worse, another possible trigger reveals itself.  It seems like a battle we will never win, but for now there are many more good days than bad.  So for now, we aren't intervening.  We are treating symptoms with medications and reducing and avoiding possible triggers.  I do fear we are heading towards another intervention soon.  We have an appointment with neurology in July where we will see if Jayson's pain is frequent and severe enough to warrant another lumbar puncture to drain spinal fluid which reduces pressure in the brain.  Currently we are treating Jayson's acidosis caused by a medication he needs.  The irony is that he is on this medication to reduce production of CSF (spinal fluid), which should lower pressures.  Yet the medicine causes metabolic acidosis, which causes headaches.  It's a vicious cycle.  So we are working to get on top of the acidosis now that Jayson suffered for MONTHS without treatment (yup, the neuro department at Primary's still sucks) and we are hoping that actually reduces the frequency and severity of Jayson's headaches.  Time will tell.

Jay still deals with dysautonomia which causes him many problems; he is going to need surgery again to replace ear tubes due to frequent infections; we had to add an additional tube feed because he's been losing weight; and his sensory issues seem to be progressing.  But for the most part he is extremely stable in most of his health conditions.  It's amazing, almost miraculous.  And we are so grateful.  We are soaking in every healthy moment, because we know how quickly that could change.

Over the past few months, Jayson has made remarkable progress developmentally.  His walking has improved tremendously since he got his ankle braces (SMO's). We rarely take his wheelchair anywhere anymore.  He's gotten better at sitting up in a regular chair to eat so we don't always have to take his wheelchair to restaurants either, which is so nice!  Since we moved into our new multi-level home, Jayson has mastered going up and down the stairs independently!!!  He has had a few falls which can be really scary since he can't protect himself in a fall, so we typically still help and support him.  But it's so great that he is capable of doing it on his own.  He has started self feeding himself small pieces of sandwich, which is huge. And yes, that's right, I said SANDWICH.  Jayson has been eating soft solids now for about a YEAR!!!  He still can't chew at all, but if it's small enough to swallow and swimming in a sauce like ketchup, he will eat it!  He's regressed quite a bit in willingness to communicate, but he is still capable.  He has just lost motivation.  But when it comes to things like tattling on his sister, he's more than willing to use his ipad to communicate!  

Things with Jayson are getting easier.  Progress is slow and he's still like a 2-3 year old toddler with many skills, but we aren't worrying about keeping him safe and alive all day every day.  He requires less support and intervention than he ever has and it makes me so proud to see his progress!

I attribute some of his progress and success to him becoming an older brother.  He has had to step up and become our big boy.  He has had to become more independent.  Over the past two years, Jayson has learned a lot about how to play, share, eat, ask for something, get attention, communicate, run, climb, get praise, tease and sneakily get away with things THANKS to his new little sister.  He is learning how to be a kid and he has the perfect crazy example.  I think the biggest blessing in Jayson's life has been getting a sister.  He many not always see it that way. haha!

Cozygirl has flipped our world upside down.  That girl is larger than life.  Her huge spirit is far too big for her little preemie body.  She lives life 110% at 100 mph.  She never slows and never stops.  She is perky, bubbly, hyper, bouncy, sassy, silly, wild, rowdy, feisty and so very sparkly.  Everything about her just glimmers.  She lights up all of our lives... while making us so very exhausted!  If only we could have an ounce of her energy!  Cozette is a people person.  She demands and requires constant interaction.  She hasn't the attention span or interest to play with any toys.  She wants to talk and play with people.  She thrives off of interaction and communication and is extremely social.  She won't typically cry when hurt, but if you walk out of a room without letting her come, bring on the tears!  She's my constant little sidekick, my mini, my little bestie.  Little Cozette has everyone she loves wrapped around her little finger, Mommy included.  She is our world.  I have never been so happy nor so exhausted!  I am so fascinated by how much she learns and how effortless it comes.  I don't take a single thing she learns or does for granted.  It almost feels magical.  

Cozette has had some struggles in her short life too.  Since Cozette is verbal and not cognitively impaired, I feel that the details of her physical and medical struggles are HER story to tell, if she chooses.  So I'm not planning to share the details openly.  She is still battling some hard things, but she is living up to her brother's reputation and not letting anything stand in her way.  She deals with daily pain and doesn't let it get her down.  She inspires me daily, just like her brother.  I feel so blessed to be the mommy of two amazing, determined, strong kids.

Cozette is extremely physical.  She loves to be active.  She climbs absolutely everything and has no fear.  I've had mothers of several boys tell me that Cozette gives their son's a run for their money.  She is fearless and wild.  That's a dangerous combination!  I'm excited to see where her interests lie because I anticipate that she will be athletically inclined!  I hope to start her in dance and tumbling soon!  It will be so fun to watch her grow, develop and continue to gain new skills!  I love looking at the world through her little sparkly eyes.

That is an update on the two littles.  Given they are my world, that's pretty much an update on me.  Mike is graduating with his master's degree in a week and I couldn't be happier!! He has worked soooo hard and it's been challenging on all of us.  He walked in April, but will finish his degree and classes next week.

I have the summer off from work to enjoy my children, which I am thrilled about.  It seems that every other summer I have had another job, was recovering from pre-eclampsia, or moving so I couldn't really enjoy the time with my kiddos.  But this summer we are going to enjoy the ordinary and make extraordinary memories as well!  The highlight of the summer of 2019 will likely be an upcoming trip with some super-duper exciting events and news!!!  I can't WAIT to share the details.  It will definitely be a summer to remember!

I hope part of my summer includes some more blogging.  But if you don't hear from me, it's probably because I'm so busy making memories that there isn't time to document them!
Or sleeping.  Please let it be sleeping.

What do you have planned for the summer?  Any fun adventures?

Whatever it is, I hope we can all make time to sit back, smile and find joy in the ordinary, messy, crazy, lazy days of summer.