Things have been pretty boring around here, to tell the truth. But I have come to embrace the mundane. The average. The every day.
In other words, the healthy times.
It has been about 5 days short of 6 months since Cece's last bout with pneumonia, which was the cause of her last hospitalization. Really this is nothing short of a miracle. For a child with sickle cell disease it is just plain expected to be inpatient several times a year. (Isn't there something ironic with regard to the two definitions of "inpatient???" But I digress...) Last year she had frequent flyer status after visiting our friends in Peds 4 times, the last one ending on Christmas Eve. Thank you Lord, for the miracle of the timing on that release!!!
So although I try my hardest to have FAITH and PATIENCE and TRUST and all that good stuff, the reality is that I am always waiting. As another mom of a young child born with sickle cell disease said, "I'm always waiting for the other sickle cell shoe to drop."
Sometime soon I think I will post some FAQ's about SCD, because I sure didn't have a clue what it was all about before our beautiful girl came into our lives. But the reader's digest version is that there are a lot of issues that can come along with it, and no one can really tell you when or how or even IF your child will have to deal with them. It's a waiting game. A hoping game. A praying game.
I've never been a superstitious person, but every time someone asks me how the kids are doing I feel compelled to knock on wood. Ridiculous, I know. But this is life sometimes, for all of us. Taking a breath and hoping for the best. Taking a step and hoping not to fall. Taking a leap and letting faith show us the way.
So let me just say it out loud...and this is tough for this control freak to do...
GOD, YOU ARE IN CONTROL.
And YOU are good.
Tomorrow I attend my first patient advocate group meeting at our local hospital. I was asked to participate in order to represent parents of pediatric patients. I was flattered and surprised, and happily accepting of the invitation. I am hoping that maybe, in some very small way, I can make a difference for Cece's future - and for the future of any other children that will visit there. After all, she'll be spending her share of time in Room 204. She already has. But for now, she's sleeping peacefully in her room full of stuffed animals and waaayyy too many shoes (she has a thing for shoes - really).
Thank you Lord, for the healthy times. Please send some Abby's way.
Monday, September 29, 2008
Saturday, September 20, 2008
More prayers, please...
Once again, not too sure that anyone reads this...but just in case someone does, please say prayers for Abby and her family. They are being tested in so many ways at this time. You can read about them at http://www.riggsbunch.blogspot.com/. As much time as we've spent in the hospital over the last two years, it does not even hold a candle to the trials that the Riggs' have undergone in recent weeks. God bless all of them!
Monday, September 15, 2008
Wednesday, September 10, 2008
Where were you?
When I was growing up, I remember hearing my parents and their peers ask each other "Where were you?" They would talk about a date in November, 1963 when things seemed to just stand still, and no one really knew what to do next. At the time I was too young to really understand, not to mention that no such pivotal event had occurred during my lifetime. But in 2001, that changed.
I'm not a conspiracy monger, a political junkie or a news hound. But I think that it is relatively safe to say that for all of us that remember September 11, it had some impact on us. Maybe it wasn't immediate, and maybe it's not obvious each and every day. Maybe it's just that you can't take clear liquids onto a plane, and that you have to have your shoes inspected. Or maybe it's that you try to remember to hug your kids just a little more every day, or tell your spouse that you love them just one more time. To me, it has been those things and more.
On September 10, 2001 I was in Peoria for a class on erosion control techniques. I'd been away from home for quite a few courses that year since I had just been promoted and needed to learn how the heck to do my new job. For this particular course, I was attending with 6 or 7 other staff members from my office. None of us were particularly close friends but still planned to enjoy our time away for a couple of nights while we were put up at a hotel downtown.
I have to admit, I really don't remember what I did on September 10. I think it was average. Nothing out of the ordinary. I didn't say one extra "I love you," I didn't say one extra prayer, I didn't think about what the next day would bring. I was oblivious, like most of us probably were.
The morning of September 11, I went down to the hotel restaurant for breakfast and met up with one of my coworkers. As we sat and ate and chatted about nothing in particular, another one of our coworkers arrived at the restaurant. She walked in and simply said "a plane has hit the World Trade Center." Now I am not a worldly person, and I guess I just didn't catch the significance or context, so I asked if there was some such place in Peoria. She said that it was THE World Trade Center in NY. We talked about it briefly and all three of us assumed it was some errant small plane, and that it couldn't be that big of a problem for them...after all, they'd been through a bombing. We left and walked to the class location a few blocks away, without much more discussion or thought on the subject.
As we walked into the hotel where the class was being held we noticed several people sitting in the bar area watching the news on a big screen TV. We saw pictures of the first tower in flames. A terrible accident, that's what we all thought. And we walked away to attend our class on the lower level of the hotel.
We sat in the basement of the hotel with no internet, phone or TV access to provide us with updates. But we knew things were bad when one of the instructors interrupted the class material to tell us that the second tower had been hit...and then the Pentagon...and then another plane had crashed in Pennsylvania. Being as we were State employees, we did not know if we were to leave and go back to our offices to provide emergency services, or to stay where we were. At the very least we all wanted to be back with our families, but were being told not to drive unless absolutely necessary. Rumors of car bombs and other violence ran rampant. We watched the events unfold in the hotel bar during our breaks, and wondered what would happen next. None of us focused on the course subject particularly well.
After class we all walked back our hotel in virtual shock. We had planned on going out for dinner, but just didn't feel safe leaving the hotel...so we ordered pizza and hunkered down in one of the rooms. We called our husbands, wives, kids, parents and friends. We cried together. We had a couple of drinks together. And really, we were just acquainances, but it was what we all needed at the time. I'll never forget it.
And I was never so happy to get home and kiss my husband.
Why do I think of these things today? I guess I just want to remember that each day is important. Maybe it's just another Wednesday, but I shouldn't let that chance go by to give my son an extra kiss at bedtime. Or spend 10 more minutes reading yet another "Olivia" book to my daughter. Or take that moment before I fall into a comatose sleep to tell my husband that after almost 11 years, I'm still blessed to be his wife. Things that I always take for granted...but that many would give anything to have back.
Where were you?
I'm not a conspiracy monger, a political junkie or a news hound. But I think that it is relatively safe to say that for all of us that remember September 11, it had some impact on us. Maybe it wasn't immediate, and maybe it's not obvious each and every day. Maybe it's just that you can't take clear liquids onto a plane, and that you have to have your shoes inspected. Or maybe it's that you try to remember to hug your kids just a little more every day, or tell your spouse that you love them just one more time. To me, it has been those things and more.
On September 10, 2001 I was in Peoria for a class on erosion control techniques. I'd been away from home for quite a few courses that year since I had just been promoted and needed to learn how the heck to do my new job. For this particular course, I was attending with 6 or 7 other staff members from my office. None of us were particularly close friends but still planned to enjoy our time away for a couple of nights while we were put up at a hotel downtown.
I have to admit, I really don't remember what I did on September 10. I think it was average. Nothing out of the ordinary. I didn't say one extra "I love you," I didn't say one extra prayer, I didn't think about what the next day would bring. I was oblivious, like most of us probably were.
The morning of September 11, I went down to the hotel restaurant for breakfast and met up with one of my coworkers. As we sat and ate and chatted about nothing in particular, another one of our coworkers arrived at the restaurant. She walked in and simply said "a plane has hit the World Trade Center." Now I am not a worldly person, and I guess I just didn't catch the significance or context, so I asked if there was some such place in Peoria. She said that it was THE World Trade Center in NY. We talked about it briefly and all three of us assumed it was some errant small plane, and that it couldn't be that big of a problem for them...after all, they'd been through a bombing. We left and walked to the class location a few blocks away, without much more discussion or thought on the subject.
As we walked into the hotel where the class was being held we noticed several people sitting in the bar area watching the news on a big screen TV. We saw pictures of the first tower in flames. A terrible accident, that's what we all thought. And we walked away to attend our class on the lower level of the hotel.
We sat in the basement of the hotel with no internet, phone or TV access to provide us with updates. But we knew things were bad when one of the instructors interrupted the class material to tell us that the second tower had been hit...and then the Pentagon...and then another plane had crashed in Pennsylvania. Being as we were State employees, we did not know if we were to leave and go back to our offices to provide emergency services, or to stay where we were. At the very least we all wanted to be back with our families, but were being told not to drive unless absolutely necessary. Rumors of car bombs and other violence ran rampant. We watched the events unfold in the hotel bar during our breaks, and wondered what would happen next. None of us focused on the course subject particularly well.
After class we all walked back our hotel in virtual shock. We had planned on going out for dinner, but just didn't feel safe leaving the hotel...so we ordered pizza and hunkered down in one of the rooms. We called our husbands, wives, kids, parents and friends. We cried together. We had a couple of drinks together. And really, we were just acquainances, but it was what we all needed at the time. I'll never forget it.
And I was never so happy to get home and kiss my husband.
Why do I think of these things today? I guess I just want to remember that each day is important. Maybe it's just another Wednesday, but I shouldn't let that chance go by to give my son an extra kiss at bedtime. Or spend 10 more minutes reading yet another "Olivia" book to my daughter. Or take that moment before I fall into a comatose sleep to tell my husband that after almost 11 years, I'm still blessed to be his wife. Things that I always take for granted...but that many would give anything to have back.
Where were you?
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