Samuel screamed a lot today. We had to do an IV because he no longer has a CVL that we can draw blood from and push contrast through. So... that was painful. He was writhing, shaking, hitting, kicking and pushing. It's heartbreaking. It's frustrating. It makes me want to go punch a wall. But instead I rub my husband's shoulders as he has our son in a bear embrace to keep Samuel from moving as he is being poked with needles. The first stick didn't take... so guess what... you do it over again.
The problem started early on when the radiologist tech told Samuel that he would need an IV before she had anything to start one with. She wasn't ready or prepared. If looks could kill Mike would have slain that woman. Yeah, she really wasn't thinking. He started crying and getting hysterical... so much so that the tech sent us up to the clinic to have them take blood and start the IV. She wimped out.
We had arrived at the hospital at 8 this morning. It was 9:10 when we were seen by the tech. It was 9:45 when she sent us upstairs. It was almost 11 when the IV was finally placed. It was 11:30 when we had the CT scan. It was 11:45 when we saw the oncologist. And then after 3 for the results. My new favorite 3 letters N.E.D.... No Evidence of Disease.
This transition of resuming "normal life" after treatment has not been easy. It's confusing. So much has changed... and so much hasn't. Samuel still has pain. Because of the radiation... the scar tissue from where the tumor died... side effects of chemo... etc. Samuel has painful bowel movements. He cries and screams... and it's a mess. Trying to encourage him to use the potty is like asking your kid to hold their breath under water for 5 minutes. Torture.
Samuel's diet is not varied. We can barely get him to try new things. He gags and throws up so easily. His issues of oral aversion only got worse with his cancer diagnosis. His staples consist of dry instant maple brown sugar oatmeal, go-gurt, cheetoh puffs, applesauce, fries and Cliff Z bars (nutrition bars for kids). So beside wanting sugary junk like cookies or frosting on cupcakes there is not much else he will eat. I agonize over this. I know he needs proper nutrition. He gets a feed every night through his g-tube so I know he's getting the nutrients he needs but still....
I mean come on. How many of you have read about all the good anti-cancer foods out there. Broccoli, spinach, blueberries, etc. Heck, I wish I could just get him to eat mac n' cheese, chicken nuggets... something! I mean yeah, veggies would be a bonus. So hopefully over time I will slowly get him to take a bite of new things. Literally one bite. And go from there. In the meantime I might start juicing carrots and green veggies like spinach and cucumbers and putting it in his feeding tube.
Who am I? This question echoes in my head as I stare vacantly into the mirror. Who is that person peering back at me? Vague thoughts bounce around.That unshowered person with no make-up.... when has she brushed her teeth last? Did she even fix her hair? Oh, yep, that's definitely chocolate smeared on her shirt... but hey it's complimented by the yogurt on the other sleeve. She looks tired. Is there a woman underneath all that mess? Yes. Buried underneath requiring deep excavation and overhaul... but I'm still there, somewhere.
Then there's the guilt that comes piling on faster than a plate on Thanksgiving Day. Should I do this? Should I do that? How do I care for the special needs? The regular needs? Which thing should I turn my attention to in this moment... the playroom that looks like it was blown up by a toy explosion. Kid whacking other kid with a block. the child in tears because a toy was "stolen". The spilled milk on the table. The banana and yogurt mush on the floor... the pile of dishes in the sink. The crying baby. The exhausted student. The homework. The laundry.
My bedroom that has somehow become the secret operating headquarters of every member in our family- piles of clean clothes in laundry basket, dirty dishes, broken toy, Christmas wrapping paper, half-eaten snack bar, box of items that I need to do something about, box of half-written Christmas cards.
Reminders of all that is undone everywhere I look. The phone calls that need to be made. The appointments that need to be scheduled. The child that needs to be listened to. My lap needs to be sat on by a minimum of two children at a time and an assortment of books ranging from my little pony to dr. seuss to thomas the train and the magic school bus are placed at my feet. Good thing I'm sitting indian style.
All that said, this may sound crazy, but I know this truth, I'm going to miss this one day. My kids are going to grow up. And they're going to leave... and have lives of their own. Wow. In 17 years Peter will be 18. And I know 17 years is a very short time. In 11 years Libby will be 18. 11 years. I've been in love with my husband for 10 years. 11 is not long. It's a blink. It's a breath. Inhale. Exhale. Time passes too quickly.
So instead of focusing on my disaster of a room... or all the things left undone I'm going to stop and savor. Savor the smell of my son's head... a mixture of banana and sunshine. Enjoy the beautiful drawings and pictures my daughter makes for me. The monkey antics of a little boy who desperately wants Mommy's attention. The unspoken communication through the raise of little eyebrows while a hand is jammed into a mouth.
This winter break has been so good. I've just been enjoying my kids. Enjoying reading to them. Playing with them. Singing with them. Dancing with them. Feeding them. Bathing them. Talking about Jesus with them. And I think I'm learning that at the end of the day it's more important that they know how loved they are than how pretty and put together Mommy is or the house is. I think they like my smile and snuggles more than make-up, style and a cold tone or harsh rebuke.
You know when Mama ain't happy.... no bodys happy.
So, adjust my attitude. Enjoy the dirt. It will pass. One day my kids will be out of the house and it will be clean. But I think secretly I hope it's never perfect. I hope that I have grandchildren mucking it up for me. I don't want to be so caught up in my own little world that I can't let life enter. Life is messy. It's complicated. It's beautiful. It's horrible. It's painful. It's transforming. It's full of CT Scans and medical appointments. It's full of pancakes and syrup. It's mopping the floor. It's watching your children make up knock-knock jokes that make no sense whatsoever but you're laughing so hard because they are hysterical. It's watching the performance of a world-famous hoola-hoop artist. It's broken crayons and coloring outside of the lines. It's grocery store shopping with five kids by yourself. It's running out of toilet paper. It's cooking the perfect turkey. It's burning the cookies. It's putting on a band-aid after kissing owies. It's music at night. It's belly laughs while watching NBC comedy shows. It's apple with peanutbutter. It's roses with thorns. Somedays I'm walking on broken glass. Somedays I pretend taking a shower is time at a spa. It's winter's bleak gray sadness with the promise of spring. It's burning fevers and Tylenol. It's a pair of red high-heels. It's a perfect quote from a book that captures your heart sentiments. It's warm cozy blankets with hot cocoa with peppermint whipcream. It's writing your heart on paper... or at least on a screen.
Congratulations. If you have read this far you should be proud. You have read the ramblings of a tired, borderline crazy Mama. Thanks. I think I've said enough for one day...