Wednesday, April 18, 2012

Wordless Wednesday: T-Ball

Tonight was the first t-ball lesson for the kids. No teams yet, just learning the basics.

Saturday, April 14, 2012


I saw the GI about two weeks ago and it was decided that I needed to be biopsied again. I scheduled the test for May 7 because I had a trial before then. At the time, I was feeling bad--nausea after meals and the pain and other the symptoms I had been experiencing for a long time--but it was manageable. The doc even offered me pain meds that work specifically on the small bowel where my pain has been concentrated forever. I declined because I knew no matter the test results, after the test, I was going gluten free to see if it helped. The GI was in agreement and actually suggested it before I mentioned that was my plan. So, I left that appointment, ready to do what was necessary. I had a plan.

That was about two weeks ago. With the test coming, I made certain I was eating at least two glutenous meals a day. And then, I started to get worse. Every symptom has intensified. And now, I'm living in a food nightmare.  I dread eating, but I seem to always be hungry, even after eating. I feel like I'm living in a constant fog and I can't concentrate. I'm tired all of the time, but I can't sleep. The pain and nausea are at all time highs. I could barely drive the other day and as soon as I got home, I kissed the kids (barely) and dropped into bed, crippled over in pain while the world seemed to be spinning relentlessly.

The Mad Scientist implored me to stop the killing myself for the diagnosis and TRex begged me start not eating what I love, but I didn't have a day to take off before the trial, especially since I didn't work Thursday afternoon through Wednesday morning.

And then it happened, the trial got wrongly adjourned (by the other side), so I gratefully moved my test up. I will finally be able to go gluten free this Thursday. When I began this journey back in February, I dreaded going gluten free. But now I'm ecstatic at the thought. I want to feel better. I need to feel better.

Gluten had better be my nemesis. I can't take any more of this nightmare.

Tuesday, April 10, 2012

Take Me Back Tuesdays: Grandma

Thursday afternoon, as I returned to my office from a meeting, the phone rang. It was my husband. My mom had just called him to say my paternal grandma had gotten sick. She was non-responsive and being admitted to hospice. I jumped in the car and drove to her nursing home. I sat with her and my parents several hours that night. And I returned the next day, spending many hours saying goodbye. Around 4:30 am Saturday morning, my grandma passed away. We said our final farewells this morning. Below is the tribute I wrote for her and read at the service.
My grandma has been a constant in my life for always. She was the primary babysitter for my sister, the Editor, and I when we were young. We spent countless hours playing games in her living room in the condo just up the street from this church. Grandma taught us to play solitaire. She bought us each our own decks of cards. She got us paper dolls for which she showed us how to create our own clothes. She even bought us the toys in the grocery store mom and dad never let us get. And brought us home the good leftover food from the cafeteria. My favorite was the soft pretzels.

On laundry day, the Editor and I played in the basement, plucking away at the old organ, singing songs with Grandma. Or we'd play Labyrinth or Booby Trap, which Grandma had taught us. My kids still love to play Grandma's old Booby Trap game to this day.  And I can clearly remember watching Grandma sew in her little room, with the soap operas on in the background.

And when Grandpa would get home from work, Grandma always had dinner just about done. He'd have enough time to sit in his chair and close his eyes for a couple moments while Grandma filled him in on the day. Of course, when it was time to eat, Grandma would call him to the table, but he wouldn't hear because he'd turned his hearing aid off. When did he turn that off? Before or after she told him the goings on. I fondly remember the two of them yelling at each other because his hearing aid was off. 

Most importantly for me as a kid, Grandma always had ice cream in the freezer for after dinner. She said it was only for Grandpa, but long after he died, she continued to have ice cream every night after dinner.

I remember afternoons of Tripoli and walking down to the playground with Grandma. I remember clearly Grandma pushing the Editor in the baby swing for what seemed like forever to the four-year-old me. But the Editor loved to swing, so Grandma wasn't about to stop.

Grandma taught me to ride a bike. She had bought it at the church rummage sale and cleaned it up for me and painted it green and yellow. (Or did Grandpa do the fixing up?) Grandma brought me out to the parking lot and said she'd hold on, but she let go. And I was fine. I must have rode in a circle for hours that afternoon. Grandma watched from her sliding glass door the entire time.  She was always watching from that sliding glass door.

Grandma and Grandpa took us camping in their big motor home.  I remember swimming at KOAs, Grandma letting us take Grandpa's binoculars to look at freighters when he wasn't around, and taking the ferry to Canada for cherry tarts. Grandma took us to Tennessee and the Carolinas to see our southern family members (all Grandpa's family). And she always made it fun.

That was who she was to me as a kid. Grandma was a lot of fun. She took care of us and scolded us when we deserved it, but I remember lots of interesting adventures and games.

As the years went by, I didn't get to play games with Grandma as much, but I still called all of the time. She always wanted me to write, but I'm no good at that. So we talked on the phone. A lot. I'd tell her about school and life and she'd fill me in on her goings on, whether it be the celebratory meal she was putting together for the group in Florida that week or what she saw out her window here in Michigan, we'd talk about it. 

As an introspective teenager and young adult, trying to figure out who I was and what I believed, I tried so hard to get my Grandma to tell me why she believed what she believed.  That wasn't so easy to do. I wanted to discuss politics; to know what she felt. She told me she voted Democrat. That was the extent. I wanted to know more, but there wasn't anything more. Not on that topic.

I wanted to discuss religion. She said she believed in God. She belonged to the Methodist Church. There was nothing more to discuss. I tried and tried. And all I would get is the goings on in the neighborhood. It frustrated me, but I knew she was a reserved woman--at least when it came to feelings and emotions. We all know my Grandma was forthright when it came to her opinions. She was never malicious, but blunt. I wanted that same bluntness when it came to the "deep" topics that so entrenched my early adulthood, but I could never get it and I thought I would never know this woman who meant so much to me.

Then Grandma started to get dementia. And she couldn't talk on the phone any more. She'd hang up on me mid-sentence.  When I'd visit, she'd repeat herself and get mixed up. She couldn't play games and it was hard for her to be with us.  And as the years went by, she wouldn't necessarily know who I was. And I thought I had lost the opportunity to know her at all.

But one very coherent day in February or March 2009, I visited with her. She knew who I was and we talked. Eventually we got around to talking about my daughter, then a one year old. At that time, Grandma enjoyed talking about her youngest great grandchild; her namesake the Dancing Queen. DQ had her second open heart surgery coming and Grandma and I discussed the logistics since Grandma had undergone her own open heart surgery years before. And Grandma was very good about talking about logistics. But, then she looked at me with the saddest eyes I had ever seen on her and she told me "You have to do whatever it takes to save your baby. You should never have to bury a child. I had two babies die. You should not have to live with that." She quickly changed the subject. But in that moment, all the questions I had wanted answered years before were answered in the tear she held back.

Of course, I knew that my Grandma had a daughter and a son after my dad. And I knew that they both were stillborn. As children, Grandma wanted the Editor and I to know that her babies existed; that she had loved them. But until that day in 2009, I didn't realize the pain that my Grandma had carried all these years. And missing something so profound about my Grandma made me rethink every other comment she had said to me; to relive all of the moments that we had shared. I remembered road trips and days at the park, phone calls and vacations, and big sloppy kisses. And I realized that while I was busy talking, I should have been listening and paying more attention. Grandma didn't need to tell me why she voted the way she did or believed the way she believed. That wasn't her. She showed me every day in the things that she did. 

My Grandma was a caregiver. She took care of all of us. She was always there. She crocheted countless layettes for babies in need up until the day her fingers could no longer work. She helped build this church we are sitting in today. She put together hundreds of dinners, lunches, and brunches for all occasions. She made many people happy and was always giving of herself.

And in her final few years, she spent a considerable amount of time surrounded by her great grandchildren, playing with them and showing them love. Even though she couldn't run after them on a bike, she still cared for them in her own way. She'd sit in her chair in my parents' living room, gathering toy after toy. Each child had to give Great Grandma a toy so she could play too. Little Car Guy even showed Great Grandma how to play his Nintendo DS. And even though she wasn't able to work the remote at that time, she looked on with great interest because her great grandson wanted to show her. That was her way. She was deeply interested in the people that she loved.
I love you Grandma and I will miss you always.

Sunday, April 1, 2012

Big Changes

Our lives have changed profoundly over the last couple of weeks: we've made a complete diet change. And no, I'm not talking gluten free. (I don't even meet with the GI doc until tomorrow.)

The day after my last post, the Dancing Queen saw her cardiologist because of all of the symptoms I've been noticing (swelling, pain, coughing with exertion).  The cardiologist had no explanation and decided we needed to cut out any extra sodium from DQ's diet.  DQ wasn't placed on a low sodium diet, but we were instructed to cut out any needlessly salty (sodium-filled foods), such as processed foods or restaurant foods.

I was very angry in hearing because I felt it was a cop out and, in the end, it didn't help with DQ's symptoms. What it did help with is convincing the kids of the changes I had been trying to implement in our family over the last couple of months. Since I had DQ's cardiologist explain directly to DQ that she had to make the change, the message sunk in.

The biggest change to our lives is not eating out as frequently. It is so difficult to find the time to cook a meal and make sure the kids still get to bed on time, especially when you throw in a doctor's appointment after school (and we're still burnt out on crock pot dinner). But, we've been working on no dinners out.

Since we don't really eat canned soups or processed cheese and the Mad Scientist tends to make most dinners from scratch, there wasn't a lot of change there. However, we did have to cut out canned beans--a staple in our house. We used canned beans in everything from soups, sauces, chili, burritos. Those are a go to for a working mom or dad looking to make a homemade meal since they were already cooked, high in protein, and not fatty like meat.

So, I have spent the last two Sundays soaking and cooking beans. We've made our own refried beans (well, they're not fried, but smooth and perfect for mexican fair).  Soaked beans for chili. And today, I've made tomato sauce from whole tomatoes (rather than canned) for a lower sodium lasagna (thanks to the lady in the store who gave DQ a sample and hooked her on the idea). We also have beans soaking to make our own hummus. 

So, what exactly is the profound change? The way we think about food. The Mad Scientist and I took this opportunity to further instill in the kids the importance of good healthy foods. We've always believed that fresh is best, but now we're placing fresh as a priority rather than a luxury. It takes a TON more time (which is precious to us), but we're all worth it. All you've got is your health. I want my family healthy. If that means I spend my weekend soaking beans, so be it.
Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
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