Sunday, September 11, 2011

They way we are, the way we were. . . and a celebration!

I was watching Regis and Kathy Lee on tv, the screen changed suddenly and like the rest of the country I was watching in horror what was happening to the city we had called home for 8 years. I was shaking and then my phone rang, my friend wanted to know if I was ok. I knew that I wasn't, but no one was. So what was I going to say? I went to my closet, took out my flag and hung it from out flag post that had a "back to school" flag hanging from it. Then I cried.

My heart and honor and love goes out to all those who have lost or were lost in the blink of an eye. I love my country, I love my state, I love being an American and no one can take that from me, and hopefully it didn't take it from anyone else.

I was thinking the other day about how much our lives have changed. . .

When we moved here from NYC, we had only 2 children. Annette and Joshua. Annette had lived the better part of the 2 years prior to our move here, inpatient at Columbia Presbyterian Hospital. She was given no chance of survival, we were pressured to sign DNR's which we did and then revoked when pushed came to shove. I had no reason to think she would be with us, 17 years later. There really is no logic to it, yet here she is. What we didn't anticipate was the fight for life was be transferred to our son just 18 short months after our move here. We toured the Pediatric ICU at the local hospital in anticipation we'd be there with Nettie, like we had been for the past 2 years. . . yet we only had to go one time for an elective procedure. Then, March 4th, not only did we see it, we made it our home for over a month. It wasn't Annette, it was Joshua.

Since then, we've been in that ICU with 4 of our children. We've watched the old go out and the new come in and have watched first year med students grow into doctors that now take care of my children at pediatric offices.

We have had a hard summer. Joshua's surgery, was much more involved than I think either Peter or I had anticipated. The results are good, but he is still having seizures and I'm disappointed. Yes, they are far less than they were, but they are not gone. I want them gone, forever. I don't know if I'll ever get what I want. Marriela is stable, but only as stable as those around her help her to be. On her own, she is unable to work through even the simplest of issues without resorting to screaming and tantruming. She was unable to continue at the respite program we had waited 3 long years to get her in. That was a huge disappointment. But, it wasn't fair for her, she was so stressed out we had to sedate her to get through the visits there. Not ok. Tray was suppose to be listed for his transplant and we were hopeful it would be all over by now. . . he is still waiting, he is still struggling. We need to admit him, but the uncertainty of his brother make it so hard to know when to proceed. Nettie has grown into a young woman and has had to learn to fill her time with activities she and her "helpers" plan, rather than family based activities. This summer, we went no where. We did not even take the kids over night anywhere. How sad is that. We tried, we were going to stay overnight in Glens Falls. . . but, Sergio developed a fever and we had to make an emergency return home. Cody, doesn't even know what summer vacation should be. His classmates went to friends houses, had sleep overs, went to waterparks and lived it up at camps. Not Cody, he visited the hospital where he had his favorite playrooms, favorite ice cream flavors and knew where all of the best toys were. And Sergio. . . he scared us, several times. He is fine, and then he's not. He is living on antibiotics and we're all scared to take them away, knowing he has only so many times he can get that sick before he can't anymore. We know what is happening, but can't do anything about it and so we live in the present, not planning anything. My heart has been heavy for Sergio, I find my thoughts drifting to what our family will be like if he isn't here one day. . . I HATE when my mind allows awful little thoughts like that sneak in. I asked for help from God yesterday, to please take these useless and anxiety producing thoughts out of my heart and mind. I'm happy to report he has. . . I actually felt peace yesterday that I hadn't felt in a long time.

So we're here, summer is gone, school has started. The kids don't seem to notice at all that things are not like they are at other people's homes. What a blessing that is.

Today we celebrated Cody's 6th birthday!! He is such a boy! All about the guns, the camo and anything soldier. So, as the great parents we are, who put much thought into educational and peace producing play things, what did we get him??? A large nerf "Tommy" gun that can rapid fire 35 shots in less than 30 secs. A shield and sword (as used by Thor the great warrior). And of course the various camo objects - a camo screen for him to lie outside under as he gets his evil enemies, a camo fannypack to carry all of the extra "bullets" for his tommy gun and a camo top to make the outfit complete. He is in HEAVEN!! LOL I know, we're awful parents, life goes on. He didn't get a summer vacay so he gets guns. And that's that.

This was a very disjointed posting. More of a venting of frustrations. I can't change what is, but find myself wishing I could sometimes.

With love,

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