Sunday, February 28, 2016

To Mourning a Diagnosis, To Parents, on National Rare Disease Day

Today marks the end of the first six months since Tiny's seizures began.  When Tiny's diagnosis was handed down, I'd never even heard of Tuberous Sclerosis Complex (TSC),  which was weird -- I'm a nursing student with a penchant to find and research rare diseases in an effort to educate myself, impress professors, and help my work stand out from the others they teach. 

I remember getting the EEG result before diagnosis: abnormal.  Okay, I can handle epilepsy, I told myself.  Thousands upon thousands have seizures and lead perfectly normal lives.

I remember getting the results of the MRI before diagnosis: abnormal.  Okay, so there's something in there, I told myself.  It'll probably have to be removed.  Given his symptoms, it's probably not cancer.  Okay, I can deal with surgery.  It'll be scary, but I can do it.  Tiny is strong and robust; he'll recover.

And then we sat down with the neurologist.  It's TSC, a rare genetic disorder...  I blinked, glanced at my husband, frowned.  His face was blank, too. ...characterized by masses in the brain... His brain was compromised.  I knew that.  I could handle that.  ...heart, lungs, liver, kidneys, and eyes...  uh, say what?  You mean that this isn't just his brain.  ...It can cause seizures, developmental delays, mental retardation, organ complication, and sometimes in severe cases...  tears sprung to my eyes.  Please don't say it.  Don't say the D word.  My baby's only two.  Please, please, please.


The Neuro proceeded to point out the problems on the MRI as numbness clawed from the top of my head, from the tips of my fingers and toes, and seep into my lungs.  Breathing?  I'm not sure I was getting proper oxygen into my lungs.

I went home and cried for the rest of the day.  I drove in circles around the farmlands while the boys napped in the back seat, and finally pulled over, put my head against the wheel and sobbed.  ...We won't know how Tiny is affected, as the range of cases is so wide...

I gave myself one more day to cry, stayed in my PJs, hugged my babies a lot, ordered take-out for dinner, hugged my husband a lot, and cried. ...If the masses grow, he may require surgery or medication to shrink them, but the damage may be irreversible...

In the months since, we have had a barrage of tests, most of which I had to help hold down or snuggle my son through.  I didn't cry then; crying in front of Tiny won't help, especially when he was already stressed about the tests.  ...He may not be able to do the things other kids can.  His seizures may not be able to be suppressedFor now, we watch and wait

I've had my days where I could barely hold it together.  Days where I'm angry at everyone and everything.  Days I'm so fearful and grateful and mindful that I'm overwhelmed by emotion.  Days where I just don't care anymore.  I swing between the stages of grief, and I know them all intimately...all, except acceptance.

I don't accept this diagnosis as the end of my Tiny.  I don't accept the well-meant, but misplaced platitudes from people who try to make me feel better about it.  I don't accept that my child will miss opportunities just because he won the genetic lottery.  I don't accept TSC, and I don't accept that I'll ever be okay with the fact that my son is fighting it to live a normal life.

I do, however, understand that this is the new normal, and I'll strive to make it as close to everyone else's normal as I can.  For Tiny. For me.  For our family, which is also affected by Tiny's tubers.  ...You should find a support group, so you're not alone, so Tiny has kids like himself... Doctors mean well, but there is nothing more torturous than knowing that you can't fix your child's problems, that he'll have this disease forever.

To all those dealing with rare disorders, I know today isn't a day for celebration for you, but it is one of recognition:  of your fight; of your passion; of your pain; of your babies; and your love.  I wish you the happiest of National Rare Disease Days and the best of wishes and outcomes for those who are hurting - parent and child alike.

Monday, February 22, 2016

Mindful Cooking with DQ

Mindfulness has become a buzzword in recent days, to the point where I try to go out of my way to avoid using it, but in the case of my tween becoming more teenag-ery, it's a good word.  Caught up as I am with the demands of a pair of toddlers, I often expect DQ to "figure it out" when it comes to entertaining herself, studying and homework, and snack-making.

I admit that this may not be fair, as I'm comparing 11yo DQ to myself at 11, twenty-some years ago.  I do think she's capable of feeding, clothing, bathing, and cleaning without being told to do those things.  She's proven her capability many times over.  But my former 11yo self differs quite a bit in personality from DQ.

- DQ is super social; I preferred my own company.
- DQ requires constant acknowledgment; I was motivated to stay under the radar by an abusive stepfather.
- DQ is not self-starting; I was independent by eight years old.
- DQ is desperate to learn from me; I self-taught myself.
- DQ takes everything to heart; I didn't allow people's words to get to me.

So, when she asks, "Can I help make dinner?" my first instinct is to deny her because I can do it faster myself.  But then that word mindful floats through my head, and I try to mask my reluctance. 

In truth, once we get going, I really do enjoy her company.  She gets super focused and careful when we cook, listening as I babble on about why we use this temperature or that knife, or how to substitute ingredients.  And she recalls the information and steps well.  She's like a completely different kid in the kitchen, one I'd like to see continue to develop.

After dinner, if she decides she likes the meal, she grabs her journal and records the recipe from memory, asking questions as I pick up and put away the leftovers and load the dishwasher.

The real reward, however, is when her mom hails me over IM to let me know that DQ made dinner tonight, and it was delicious.  I hope that, in twenty years, she forgets the fights and rules and remembers our time at the stove.

Tuesday, February 2, 2016

That's not Potato!

Helping in the Kitchen during CSA Time
"Can I help you make dinner?" DQ asked last night.  I admit, I bit my tongue against a sigh.  She's eleven, and she really does have a desire to learn how to cook things, and that is GREAT..I just..wish dinner was at noon when I had the energy to give proper instruction and didn't need to be by myself to recoup before the chaos of the dinner table.

Being an introverted mama is ridiculously hard.

So I pushed a smile onto my face.  "It's only soup," I told her apologetically, "so it's mostly just reheating and stirring."  Her face fell. "But," I hedged, "if you want to pull up a stool, I'll walk you through how to make it."

She did, and I grabbed a bag of leftover mashed potato from our last CSA box in the fall, a bag of frozen corn from the $1 sale, a bag of frozen sweet peppers I'd cored and quartered in the summer, and a sandwich baggie of cooked, frozen bacon from the freezer.  Soup is my JAM. 

I asked DQ to get me the carton of chicken broth from the bashed bin at the market -- generally, I make my own, but we haven't had a whole chicken in this house since Halloween.  Then, after adding my potatoes and some broth to dilute them to the pot, I handed her the whisk to bring them together and started chopping broccoli to roast.

"I could never do that," she commented seriously, watching me cup the larger florets in one hand and slice the stem with the other.

"Stir," I reminded her, then told her that if she was going to learn to cook, she couldn't be afraid of ovens or knives.  I dipped my spoon into thickened broth and tasted.  What the...?  I'm sure my face was a mask of confusion because THAT was NOT potato.  I handed DQ the spoon, "Try it."

She tasted, frowned, shook her head, "That's NOT potato."

"I know," I told her, "It's Alfredo.  Garlic Alfredo Sauce."

"Still tastes good," she decided, tasting again.  

I'm kind of like my grandma, in that when I cook, it's a bit of this and a bit of that and a lot of tasting.  I almost never use a recipe unless I'm trying to make a dish with which I'm unfamiliar.  The problem with that method of cooking is that it's very hard to pass on the recipes, which means much of what I grew up with has been lost with the death of my grandmother more than ten years ago.  I'm hoping that by actively teaching DQ how to cook, some of our favorites will live on, even if not in writing.

DQ's Crab Bisque

(Makes 4 Servings) 
  • 1/2 Jar Garlic Alfredo Sauce
  • 4c Chicken Broth
  • 1/2 Head of Broccoli, Roasted or Raw
  • 1/4 Bag of Frozen Corn
  • 1 Can/Tub (8oz) of Crab Claw Meat
  • 1/2c Chopped Sweet (Bell, Mini-Bell) Pepper
  • 2 slices Bacon, cooked and coarsely chopped
  • Pepper to taste
  • Parsley to taste
Add alfredo and broth to soup pot, whisk together until combined.  Add rest of ingredients except spices, stir into soup until warmed through.  Add parsley and pepper to taste, serve immediately with toast triangles or biscuits.  Soup can be stretched by adding more broth, alfredo, and vegetables, to taste.