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.
