Zupe has learned to blow! 5 Years and 5 Days!

Happy Birthday Dear Zup-ie

<table style="width:auto;"><tr><td><a href="https://picasaweb.google.com/lh/photo/PK5NnLPPqx5sFRvyJY4r8FwLqLfsR6jJSuh99TjOuSE?feat=embedwebsite"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjT3VIF0byCtQm892v0V1O6R7BeO79_7SPPeTxNo_k0-_B7cchQFGZ8yh1WoquCjAj2g0FQkeOGyafMzgwRn6BroQW77gpyif3l_FoH7pKd-2qx2i91zgnE83Hj5axedMXBQld7sTbBfZQI/s800/IMG_3081.JPG" height="600" width="800" /></a></td></tr><tr><td style="font-family:arial,sans-serif; font-size:11px; text-align:right">From <a href="https://picasaweb.google.com/109881362402743272578/April2016?authuser=0&feat=embedwebsite">April 2016</a></td></tr></table>

Happy birthday to you!!

Five years old... my big boy is growing up!

Kristi Rieger Campbell reading "What It Means To Be A Special Needs Mom"

Come on baby, do the locomotion....

From July / August 2014

Just like the first time he smiled, he hit a milestone without my full awareness.  How did you come up behind me?  What were you holding onto?  Were you holding onto the wall as you traveled through the hall?  Weren't you in the living room?

For his own reasons, today, Wednesday August 13, was the day he walked.

He walked and walked and kept on walking.  No fanfare.  No big smiles or clapping hands.

It is locomotion.  And, Zupe's on that train.


And me, I'm drying my underwear in public.  How embarrassing!

It has been a long, long time

A dear friend of mine made comment when I saw her last (in the US in February - don't feel left out.  We saw next to no one.) that my blog had been languishing.  She missed it, but "I know.  You're busy. You're a mom now."

And, I let that pass.

But it wasn't the truth.

That is to say, I AM busy and I AM a mom, but my blog doesn't get written because I am depressed.

I am depressed despite having a wonderful miracle baby and a wonderful miracle husband and a pretty great job and a lovely house and a troublesome dog.  I am depressed because things are NOT GOING PER SCRIPT.  (And, lately, I have progressed from depressed about it to damned angry about it.)

I am depressed and I am not writing because I feel guilty about being depressed.  I feel like I'll be judged ungrateful and a poor sport and a BAD MOTHER.


We saw our pediatrician in May after our seven week North American Tour last year.  He asked about Zupe and we told him that while he was not yet crawling at 13 months, he was doing much better at sitting up and could get where he wanted to be by rolling.  We felt pretty proud of this progress.  The doctor didn't say anything memorable - at least not 11 month later memorable.

But, a couple weeks later he called me to say he wanted Zupe to have an MRI.  Seems his therapy team back at the Home Oxygen Clinic (yes, we were still attached to the HOC in that small way), was concerned about his delays and felt it was time someone took notice and investigated.  Oh, and the wait would be about 6 months!

It is surprising how much your view of the world or at least that small portion of the world you call your son, can change when someone says, "Hey.  That brain doesn't seem right."  Suddenly, nothing seems right.  Your mind, if it is my mind, starts ticking off all the things that you've been seeing that are not quite like his peers.  His gross motor control is obviously delayed.  But, he's not clapping or stacking blocks.  He's not saying "mama" or "dada" or repeating "apple" for that matter.  Is he even THINKING in there?  Anything that is odd spawns the question, "Is this just what kids do? or is it because he is not right???"

They are asking if my baby has BRAIN DAMAGE for god's sake.

I remember how psyched I was to see that little brain on his/our first ultrasound at 8 weeks.  It was looked perfect! all convoluted in that little head!

And, I flash back to an early HOC visit where I was pushing his stroller from the adult to the children's hospital, along the second floor walkway, looking down onto the cafe where a mother is eating with her young adult son who is strapped in a wheelchair and vocalising loudly some non-language sounds and I remember thinking "Thank God that is not us.  Thank God for (only) a slow developing breathing center."

If you say, please let me throw money at you, you can get an MRI done with less than a 6 month wait.  We had Zupe's on June 23.  Saturday.  I held his hand while they masked him down.  Gave him a (mental) kiss and walked away thinking this may be the last time I walk away from my "normal" boy.

It wasn't really.  It took almost a week for the results to get posted to us.  A DVD disk with the radiologist's report attached.  After scanning some of the meaningless brain images, we dug out the report expecting to see what a great looking normal brain, nothing here to explain his delays brain he has - to find that was not the case.  Mild to moderate white tissue loss in cortex and brain stem.  All four ventricles are enlarged secondary to tissue loss.  Corpus callosum is thinned.  Radiologist queries possible metabolic disease.

What does a vet know about neurologic metabolic disease?  THEY DON'T LIVE!!!  Those were necropsy diagnoses.

Our pediatrician was away that week, so we had to live with knowing so much and so little from Thursday to Monday.  Monday's conversation didn't do much to alleviate my concerns - just added the idea that he may or may not be educable.  The pediatrician wanted to consult with the radiologist directly.  He referred us to a developmental neurologist and a metabolic pediatrician who wanted buckets of blood from little veins that would not be found.  (Thus, bringing about the need for another general anaesthetic.)  No genetic disorders found.  No metabolic disorders found.  No cause beyond "perinatal accident".

It has been almost a year now.  We have had our second North American visit, though not much of a tour.  (That trip from the black lagoon deserves an entry of its own - though who knows when that might happen!)  In another couple weeks we will see the pediatrician again.  We will tell him that he still isn't crawling on hands and knees, though he's pushing up more every day and he can get wherever he wants with his little shark fin commando crawl.  He still hasn't acquired his first word.  He can't put coins in a slot or stack blocks - but he can clap his hands and he seems to want to figure out how to snap his fingers.  He can't chew and he won't eat much that isn't pureed.  He can hold a spoon and take it to his mouth, but he'd rather someone did it for him.  He is getting to be very big for me to lift and carry and put into and pull out of a crib.

I'm not feeling like the story book mother of a "special needs child" who is overflowing with patience and acceptance and the love of Holland.  I am pissed and sad and feeling isolated and afraid.

After 8 years at Will County Humane Society, cat finally adopted

After 8 years at Will County Humane Society, cat finally adopted .

Duchess and I have a lot in common.  Zuperfliegen's first planning/doctor visit was in 2003.  Badaassssss delivered to his forever home - 2011.

Remembering the belly

From Photo of me

An inventory of what I miss and what I don't miss about being pregnant...particularly very, very, very pregnant.

My belly grew more quickly than my sense of self could contain and so I never stopped running into door jams with it as I tried to slide through a half-opened door. Our only raised cupboard buts into a corner and the glasses reside on the far side of that cupboard. Even standing on tip-toe my I could no longer reach them. My belly prevented me from getting close enough.

My belly became the collector of crumbs and drips. My lap was for once protected (or was it just raised?) And, for some reason unrelated to my girth, I was much more awkward with food.

Looking at Kevin I found his tummy to be small. He was now the skinny one in the family.

I hated having my sweaty stomach sitting on my sweaty thighs. I don't even like to type that. Yuck.

There was nothing about sleeping while pregnant that I will miss. I couldn't turn over without waking up and using my arms. But, that was hardly necessary at the end because I was up every 2 hours (or less) to attend to my abused bladder. And, I so missed sleeping on my back. That was the first thing I did in the hospital. I was almost surprised to find that immediately I felt "OK" on my back - something I hadn't felt for months.

Walking, particularly uphill. Won't miss how slow I became. I was always a fast walker. I feared I was changed forever. Not so.

Finally, there was the movement and the knowledge that I was possessed by another entity. Initially, it was just plain creepy. Something is inside me...and it is growing. Then came the subtle little flutters. Finally, the big sweeping movements accompanying major changes in position. When they came upon me suddenly and I was otherwise unoccupied, I'd occasionally scream.

Despite all the paragraphs above, I loved being pregnant. I was fascinated by my ever changing silhouette - even though it also embarrassed me. You can't keep being pregnant private. There is something about that growing belly that informs - even the most distant stranger. It wasn't until I was about 39 weeks along when I finally decided "yes" I need a photograph of my belly that I really, really, really appreciated my new look. Too late then to document the wondrous evolution. (You are welcome to marvel at why anyone would feel uncomfortable with sharing a much wanted pregnancy with the world. This is the nature of neurosis.)

So, I miss that firm, warm belly and despite the way it would startle me, I miss the kicks and rolls and hiccoughs within it. Still, I'm happy to trade it for Zupe.