Very long update...

October 7, 2009

Sascha’s update. Okay here we are in fall, the weather is great and I love the overcast. I have always had a love affair with the fall, but never in my life did I think my past feelings would link to my present-for reasons I could never imagine. In my past the excitement stemmed from every selfish feeling you could think of, the smell of harvest, outdoor festivals, Halloween, parties on the patio. Now it’s much more intimate, the ability to watch my daughter play outside. As we witnessed during the summer, she tends to overheat. With the slightest exposure to sun, she rashes out for days. Her body becomes limp after just a few hours. The constant reapplication of sun block is exhausting, “does she have enough on? Is it still on? Will it stay on? Oh crap she just got wet, do you still think it’s on?” This pounds through your mind like the ghetto blaster heard in the 1983 Honda civic with the 22” rims. Yeah don’t even act like you haven’t heard that “joker” blasting Jay Z through every town. Anyway, glad to see the overcast, the cool weather and Sascha’s smile.

She has been amazing with her treatments. She is known as the 4 year old who doesn’t cry. She gets her IV like a champ. They have been more concerned with mommy than daughter. Watching that needle pierce her skin and knowing that it is going through her vain to then be flooded with toxic levels of steroids isn’t exactly a picnic. Sascha however, watches the whole thing. We even had a “gusher”, yeah that’s what I said a GUSHER. Sascha just watched as the blood shot out of her hand, I on the other hand was just praying it didn’t hit the ceiling. Okay we all know it wouldn’t quite make it that far, but in the moment it becomes a different feeling. During the three days of treatment she is definitely tired and sluggish. They mentioned that it may give her a profound jolt shortly after receiving the drug. This part is true, but short lived. What goes up definitely comes down. In this experience it comes down fairly quickly and basically stays down. A couple days after her treatment, she is back 110%, I know you mathematicians cringe at this percentage. The reason I gave it an extra 10% is that she is actually an additional 10% nicer than normal. She is a different child for all the right reasons. It’s fantastic. I just want to show her off like a prized stallion. Especially to all the people she had offended the 4 days before. If you are one of them reading the blog, again sorry.

There has been a lot of snuggling and hugs. She loves this. I have to admit so do I. Just like everything, you have to find the upside to it all. I have found another person in my daughter to which I didn’t know existed. One waits years for their kids to mature to see what they become or who they are. I have had the gift of insight through this. For one, I have never seen her more beautiful, her sneaky smile is not only cute and innocent but it also has a dash of mischief. Her strength is similar to the writings of the Greek warriors. I’m not talking about the women who loved hard and stood up to the hand that slapped them down either. I dare compare her to the men who took down cities, who fought with passion and conviction. This is a four year old who walks into every appointment, not behind me but in front of me. She looks everyone in the eye and studies their every move and learns their position in all of this, their hierarchy. When there is discussions about her, she doesn’t pick up a book and let the adults talk, she sits upright and doesn’t allow herself any distractions. She was getting her infusion yesterday, and we had a new nurse. The nurse was occupied on the phone, when Sascha decides to interrupt her and say in her daintiest of voices, “excuse me miss, are you ever going to check my heart and blood pressure?” Man I wish I could have taken the nurses picture. She gave Sascha a look, it was written all over her face, “this kid isn’t that cute”. Sascha could care less what people think of her. Of course I looked at Sascha as well, and she knew what was coming, she popped her head in my direction and answered my look by saying, “WHAT, it’s true, every 15 min.” You know I couldn’t argue with that.

As far as the other two kids, Diego is still learning to use his voice and fight back. Jazzy is in love with Sascha’s “happy day” and bites her lip on the other ones. She continues to be a very loving sister. We just need to pray for Savvy, this is one dog who is depressed. With all the madness in the home, she is just begging for a belly rub. She went from 5 a day to about 5 a month. It’s not like we don’t notice her, she’s 95 pounds. She started to eat their toys so at least she is getting a little attention now. We just won’t mention what kind of attention.

I will now add a new section to my blog. It is “STEROID MOMENTS”. This is the comic relief moments that we can only blame on the meds. Or that we choose to anyway.

STEROID MOMENT

On Sascha’s second day of infusion we need to pick up some stuff at CVS. Remember she has the IV in her hand that the nurse wraps it up so she remembers that it’s in and doesn’t bump it. Okay with all this said we are checking out at the counter and the 20yr old at the register is looking at Sascha’s arm. I now know that my daughter has been getting a little tired of explaining her situation. All I’m doing at this point is rushing and hoping this cute little 20yr old doesn’t say anything so she is not exposed to Sascha’s wrath. But you know she does…”Hey sweetie, did you break your arm?” Here it goes, Sascha’s words with the stare of Cujo, “UH no, I was POKED, now?, can you stop staring at my arm!” This little 20yr crumbled like a deck of cards, “OHHH, I’m so sorry I wasn’t staring”, Sascha, “UH, yeah you were”. girl “okay I’m sorry” Sascha looking to the left and rolling her eyes, “yeah, okay”. As Jazzy would say, “WELCOME TO MY WORLD”.

Thanks again for taking the time to read my blog. Remember to take all the good with the all bad. God willing, the gift of a new day, a new start, is around the corner. Oh yeah, and there is always VODKA!

Peace and love