Monday, August 29, 2016

The Guilt of Growing Up

Cleaning buddies are the best!
As D-Day (that would be Diagnosis Day) approaches, I find myself reflecting a lot on the past year.  I've read some of my previous posts and hurt all over again for where I was and what I was feeling on those bad days.  I've counted my blessings.  I've thanked my stars.

In one week, I'll have a middle schooler.  In two weeks, I'll have a preschooler.  In that time, I'll be left with only one little one here at home with me, one who has never really gotten one on one time with mom.  I keep thinking to myself....what will I DO?!  More laundry?  SOME laundry?  Maybe it'll actually regularly make it into the dryer!

I keep looking for opportunities online to take Squeaky to things that I've always wanted to take him to, but couldn't, because Tiny gets so overloaded.  Things like storytime where they -- GASP -- sing songs!  Tiny screams and covers his ears when people sing, but Squeaky stands up, claps, dances, and tries to sing too.  Things like the petting zoo, where I have no doubt at all that Squeaky will do that cry-and-pet thing he does when he's afraid but really, really wants to try.  Things like apple picking, which is just too hard all on my own with two little people running in opposite directions.

For once...I feel like there's freedom on my horizon.  It feels like warm sunshine on my skin after a month of rain.  It feels like the smell of cinnamon and chocolate spinning in the air as cookies bake.  It feels like the lift you get off a trampoline on the rebound, soaring high into the air before plummeting back toward the elastic.

It. Feels. Indescribable.

And then I feel guilty, because the only way to achieve this is to put Tiny in a developmental preschool, because his brain is broken.  I feel bad for feeling SO GOOD.  But even that three hours a day, four days a week feels like heaven after the slog and burn of being so trapped at home for three years.

I try to console myself... the last three years weren't ALL bad.  There were a few rays of light among the dark clouds as they rumbled and grumbled by.  Hell, prior to D-Day, except on the topic of sleeping, I was fantastically happy as a new mom.  It was hard, but at least I was happy.  I remind myself of a few things:

  1. I've done everything I can think of, everything I've researched, and everything I could do to get my child all the help he needs.
  2. I've done my best to be fair and kind.
  3. I've tried to remember that I also have two other kids, and treat them appropriately, even when I'm having a rough day.
  4. My kids are happy, (mostly) healthy, (mostly) clean, well-fed, clothed, and loved.  And that's what matters.
  5. ...All kids go to school eventually...  And many mothers with only NT kids rejoice just as I have.
So as I tick things off the back to school list for my TWO school-aged kids, I try to tamp down the guilt that hugs hotly around the base of my neck.  My mantra lately is, "I'm doing the best I can.  I've done the best I can.  I will do the best I can."  Still, even though I was adamant that Tiny needed to get to school for all the great things it will bring him, I know that as the day approaches, my doubt and guilt and desire to keep him home mounts.

Tuesday, August 23, 2016


Growing up is hard to do!
In about twelve hours, my baby will be three years old. 

His birth was a 52-hour long struggle, culminating in an emergency C-Section.  But he was strong, and the doctors were amazed at his Apgar scores and good nature.  I was the weak one, having bled so heavily that we had to stay in the hospital for a few extra days.  He refused to nurse, lost 10% of his body weight during our stay.  And then, there was the Cystic Fibrosis scare - thankfully, it was a false positive, but as he was my first baby, I was petrified at what could be.

We struggled with illness so much in his first year.  Nine ear infections alone, plus bronchial and sinus infections with them; we ended up getting tubes placed right after his first birthday.  But he was happy through and through, taking his meds like a champ and babbling adoringly at me after.  He was such a congenial baby, but he never slept well.  By four months, the hubby and I would look at each other and say, "Any day now, he'll start sleeping longer."  By six months, it was a mantra.  By ten months, we were exhausted and frustrated.  I let him cry it out too long, and still, he didn't sleep.  I remember watching the minutes tick by on the clock as he screamed for me, begging me with his tears to come help him sleep.

Year two rolled around, and our happy boy still wouldn't sleep.  But worse, the language gap that I saw forming from his first years was widening.  He wasn't talking.  I referred to EI to get him some help right before he came down with Hand, Foot, and Mouth Disease, running a 104-degree temp for several days.  He got over it just as quickly as it set in, but not even a week later, I started seeing him twitch and duck his head.  Concerned, I took him to the doctor, who referred us to the First Seizure Clinic at Children's, who did an EEG...He was put on anti-convulsants, and an MRI was ordered.  Not long after that, he was diagnosed with Tuberous Sclerosis, and our lives -- already so changed from the perfect image I'd imagined -- altered even more drastically.

This last year has been a crazy mash of therapies, tests, medications, preparations, frustrations, and love.  If anything, I'm honest here, because it's important to me that those moms out there with special needs kids understand that this life we lead is no "miracle"'s no "warrior's life"'s no "special" life.  It's all-consuming, immersive, and exhausting.'s also an amazing teacher of patience and perserverence.

This last year, I've learned more in how to appreciate the cuddles and kisses instead of wasting time dwelling on the frustrations.  And now, with my baby so big, going off to school in less than a month, I find myself misty with nostalgia for those days where it was just me and him in a big, quiet house, snuggled up on the couch together.  I mourn less and less for that ideal, normal life as he forges forward in the only life he knows, exploring and getting into heaps of trouble -- much to my exasperation most of the time.  It's hard for me to express in words my hopes for him, so for now, I can only say that my biggest hope for him is a good year, a seizure-free year, a year of learning and catching up, and a year where the smiles and wonder come back faster and brighter each time he expresses them.

Happy Big Three, baby boy.