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?
Tuesday, August 19, 2008
Prayer request
I'm not too sure if anyone really reads this thing, but if you do...could you please pray for sweet Abby? She's not feeling very well. You can read about her at http://www.riggsbunch.blogspot.com/. A specific list of prayer intentions are listed on the site, but I know that any prayers would be appreciated by Abby and her family. I hope that Michelle doesn't mind my posting of this request...but I know how much the prayers of my "e-friends" have meant when we have spent stressful days in the hospital with our little girl. In fact, I believe those prayers have brought miracles. And Abby needs one of those miracles right now.
Thanks!
UPDATE 8/22/08 - Abby is home as of last night and feeling much, much better. Please continue to pray as the family awaits test results and plans for her future treatment needs.
Thanks!
UPDATE 8/22/08 - Abby is home as of last night and feeling much, much better. Please continue to pray as the family awaits test results and plans for her future treatment needs.
Wednesday, August 13, 2008
Tired...but thankful
Since she became mobile about a year ago, Cece has not stopped. She goes, and goes, and goes - like our own little Energizer bunny. With only a few exceptions, the only time she sits still for more than a minute or two at a time is when she's asleep. This activity escalates exponentially when we are in unfamiliar surroundings. When we go to Target, Daddy's job is to chase Cece around the store while Alec and I shop. When we go to family gatherings or friends' homes, we plan on the fact that one of us will be chasing her up and down the stairs and trying to keep her from overturning numerous houseplants or breaking fine china.
So no matter where we go, we know that it won't take long before we hear the usual statement from those who do not know our Cece...
"Wow, she's REALLY busy!" (Yep, she sure is...but she's happy!)
"She sure has a lot of energy! Must tire you out!" (You don't know the half of it.)
"Is she always that energetic?" (YES!!!)
I can't blame anyone for noticing that she's a sweet little hummingbird, fluttering about from one thing to the next and keeping us on the chase. We say it ourselves all the time! But what they may not know is that all of that running, climbing up stairs, and mischievous laughter was not always a given.
There were many, many nights when she first arrived in our arms that we did not know if we could care for this tiny little blessing who demanded, needed and DESERVED so much.
There have been many times in the hospital or ER when we have been in fear.
There was a time that we thought she might never walk.
But God has answered so many prayers. He gave us wonderful doctors. He provided us with knowledge through our experiences with Alec that we didn't even know we'd need in the future. He led us to AWESOME physical and developmental therapists. He gave us the energy, resources and faith to be able to help Cece grow and thrive...even when we thought it was impossible.
Her start in life was not easy. She was born prematurely and spent the first few weeks of her life in the NICU. When she was placed with us at 9 weeks of age, she weighed 7 lbs 6 oz and came along with her own laundry list of doctors, appointments, medications and procedures. One way to scare the heck out of a parent is to tell them that they'll have to learn infant CPR before they take the child home. We were just a little overwhelmed (ha!).
Amongst several other issues, Cece's feet were turned in severely. In fact, her heel chords were so tight that it was impossible to manually push them into a neutral position (i.e., 90 degrees from the leg - the usual, natural position of a foot). We ended up starting her into twice-weekly physical therapy soon thereafter. We would drive home from work, pick the kids up from daycare, and drive 25 minutes to the therapy appointment. After a half hour of torturing (I mean, helping) our infant daughter, we would load back in the van and head home for the bedtime routine. Twice a week, every week. I think our van became one big McDonald's french fry pit during those months...yech.
After several weeks it became apparent that those darned heel chords were not going to let up. So we added one more doctor to the list - a pediatric orthopedist. We traveled to Peoria to meet with him for the first time, and only minutes after he looked at Cece we were watching her be fitted with plaster casts. The goal was to put her feet into a neutral position for an extended period of time (10 days) and then, hopefully, get her into some braces to keep the stretching going. We were adamant that surgery was a last resort. The risks were just too high, and the benefit too low, especially for a child with sickle cell disease.
Casting was NOT fun...starting with 1 1/2 hours of inconsolable baby screaming on the way home. But there was nothing we could do for her, except provide an unending supply of Tylenol. (For all of you who have had a child go through hip Spica casts...my hat is off to you!!!) None the less, she adapted quickly and after three or four days she could sleep again, sit again, and generally manage. The poopy diaper changing was another story...yuck. Amazingly I believe that we managed to keep those casts clean. Luckily she's never been a "blowout" kid.
Then there was the bracing. Pretty minor, really. The biggest challenge was getting her to sit still long enough to put them on every morning!!!
Now my beautiful girl not only walks, she runs. She jumps. She wears regular shoes (as long as they light up or have sparkles...or the cherished ladybug rainboots). She climbs up on stuff and gives me heart palpitations.
And I cherish every minute of it.
Run on, baby girl. Be as busy as you want.
We'll just keep chasing after you...and thanking God for everything that you are.
Tuesday, August 12, 2008
Babies, baths, and juice
So it's been about 2 months since I intended to start this endeavor. I guess for the most part, the nights have been a little late, the house is a constant mess-in-progress, and I just haven't been inspired to write much. But over the last couple of days my son has blessed me with some adorable, 4-year-old wisdom that seems worth sharing!
Last weekend we went to a baby shower for one of our nieces. I had told Alec a few days beforehand that we would be going to the baby shower on Saturday. On Friday, he asked me when we would see the baby take a bath. The discussion of "showering with gifts" vs. "putting a baby in the tub" ensued for the next few days, including the fact that the baby was still in Cousin's tummy. Sunday evening, as we were getting ready for bed, he asked me about it again. I told him that we gave gifts to the baby, and that was what "shower" meant. I also asked him if he remembered seeing the baby in our niece's tummy, which he did.
Now, we've had lots of discussions about babies in mommies' tummies, and have explained many times that he did not grow in my tummy. But hey, he's 4, so he asks again. I'm good with that. Actually, he really doesn't ask - he will say "And I grew in Mommy's tummy!" My response is always, no, you didn't grow in Mommy's tummy, because Mommy can't grow babies in her tummy. But you grew in your Birth Mommy's tummy, and then you came to us to be our baby boy and that made us so very happy! Sometimes the explanation is more in-depth, sometimes less - I let him lead the way depending on how much he feels he needs to know at that point. But this conversation quickly took a direction I didn't expect.
"Did it go in there?" (pointing to his mouth)
I looked at him quizzically, not sure where this was going...
"Did the baby go in her mouth - like this - and then in her tummy?"
Oh my...
"Well, honey, it's not exactly like that..."
"Mommy?"
"Yes, honey?"
Last weekend we went to a baby shower for one of our nieces. I had told Alec a few days beforehand that we would be going to the baby shower on Saturday. On Friday, he asked me when we would see the baby take a bath. The discussion of "showering with gifts" vs. "putting a baby in the tub" ensued for the next few days, including the fact that the baby was still in Cousin's tummy. Sunday evening, as we were getting ready for bed, he asked me about it again. I told him that we gave gifts to the baby, and that was what "shower" meant. I also asked him if he remembered seeing the baby in our niece's tummy, which he did.
Now, we've had lots of discussions about babies in mommies' tummies, and have explained many times that he did not grow in my tummy. But hey, he's 4, so he asks again. I'm good with that. Actually, he really doesn't ask - he will say "And I grew in Mommy's tummy!" My response is always, no, you didn't grow in Mommy's tummy, because Mommy can't grow babies in her tummy. But you grew in your Birth Mommy's tummy, and then you came to us to be our baby boy and that made us so very happy! Sometimes the explanation is more in-depth, sometimes less - I let him lead the way depending on how much he feels he needs to know at that point. But this conversation quickly took a direction I didn't expect.
"Did it go in there?" (pointing to his mouth)
I looked at him quizzically, not sure where this was going...
"Did the baby go in her mouth - like this - and then in her tummy?"
Oh my...
"Well, honey, it's not exactly like that..."
"Mommy?"
"Yes, honey?"
Oh no...what now? Is it time for birds and bees? I haven't thought about that yet...panic! panic! pan...
"Can I have some juice?"
Phew. Guess I'd better work on an answer for THAT one for the next time around.
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