I think I might scare people.
This is, of course, different than seeing dead people.
I think I’ve scared away quite a few people in my lifetime. Ghoulish looks notwithstanding, I know that my garish voice can sometimes overpower, and my overly boisterous personality can be, well, frightening at times. Lately, though, I think some people have been scared to talk to me for fear that they’ll say the wrong thing. This saddens me, but I also realize there is an element of truth in the apprehension. Depending on the day, they probably WILL say the wrong thing.
I blog often about people’s insensitive comments. The irony is that, if my shoes were more “normal”, I’d be the one blogged about. I’d be the insensitive one. God had a bit of an ironic sense of humor when He handed me this deck of cards.
I’ve been asked by several different people at what point their stories of healthy children become insensitive. Or at what point their griping over relatively insignificant things start hurting my heart. You are about to read my answer.
(First, I must thank you for asking the question to begin with. By simply asking, you ARE being sensitive. You recognize my hurts and I absolutely appreciate your care.)
If you are pregnant with your second (or third, or fourth) child, please do not complain about anything pregnancy-related. This is a really tough one for me right now, and I’m definitely having a hard time dealing. I had extreme all-day-and-night sickness while pregnant with Ellie, so I KNOW how all-consuming it can be. But, please don’t come to me for comfort. I would give my left foot to be puking in a Wal-Mart bag for nine months.
If your toddler is “talking your ear off” and you want to gripe about how annoying s/he is, please find a different listener.
If your child is unbelievably smart and you want to share amazing stories of how s/he can play a Mozart piece at age 3, or how s/he can sing the A-B-C’s at 18 months, please, for now, find someone else to brag to.
If you are sad because your youngest child just started walking and this significant milestone signals the end of “the baby days”, please, please, please don’t cry on my shoulder.
If you are heartbroken because your child was just diagnosed with eczema, and you fear that a mild case of dry skin may ruin his/her life, you should definitely find someone else to give you a comforting hug.
If your child potty-trained quickly and easily, please refrain from giving me any advice on how to train mine. (I have NEVER actually asked for potty-training advice from anyone, so any given to me has been completely unsolicited, and, of course, irrelevant to my situation.)
If I ask you how your child is doing, or how your pregnancy is going, then please take that as an invitation to brag or vent. If my heart is in a good place, and I know I can handle a conversation about healthy babies, already born or still baking, I will open the door. If I ask you these questions, it means that I sincerely want to know what’s going on in your life. I promise. I won’t ask if I can’t deal.
Also notice that I haven’t once said that I don’t want to hear about your kids taking their first steps, or the joy you feel when you hear their first words. I love hearing about babies growing up into little kids, and little kids growing up into big kids. HOWEVER, when these amazing milestones occur, and you COMPLAIN about them, because it somehow makes YOUR life more difficult (chasing toddlers around is not for the faint of heart, or so I’ve been told…), I shut down.
It’s really not rocket science. Am I asking too much? Perhaps.
I also realize that over time, some of these issues won’t hurt as much. When you’re living the moment, the grief is real.
I guess it’s time to shut my mouth…
(For those of you who are part of the inner circle (you know who you are), bypass this entire post. You don’t count. I want to hear EVERYTHING about you, your kids and your pregnancy (if either are applicable). In fact, the more you gripe, the better, because it makes me feel less of a selfish whiner myself!)
Wednesday, July 30, 2008
Monday, July 28, 2008
Lakeness
We spent some time with fantastic family at the lake this weekend, and, of course, Ellie had a (beach?) ball. Who WOULDN'T rock it up while being pampered to a pedicure, having a personal bike chauffeur, playing with cousins, feeding a birdie, and wearing Jackie-O sunglasses?!
Saturday, July 26, 2008
Tuesday, July 22, 2008
A Story about a Girl and her Girl
Easy now, you have nothing to fear; I'll take care of you and your children."
Gen. 15: 19
Let me tell you a story about a girl. A vertically-challenged, natural curly-haired, glasses-wearing girl. A girl with a voice loud enough to startle a sleeping baby. A girl who laughs more than she cries. A girl who answers, “wicked awesome!” when asked how things are going. A girl who is often told that she has things together, that she’s a great mom, that her daughter is so lucky to have such encouraging parents.
A girl who’s so comfortable hiding behind her mask it’s become her second skin; a protective outer layer that’s painful to peal off.
A girl who, deep down, lives in constant fear.
This is a girl who spends a lot of precious energy trying to cover up her fatigue. She’s often tired because she spends the nights in timid thought, listing her fears.
She’s scared that the next time someone says, “Your kid reminds me of a Golden Retriever I once had; he would drool everywhere too”, her daughter will be within ear-shot and will be old enough to understand.
She’s terrified of the day when her daughter becomes so heavy that her mom and babysitter find it difficult to care for her anymore.
She dreads the day her daughter asks, “Why don’t my legs work, Mommy?”
She’s fearful of running out of therapy and surgery money.
She’s frightened of September, 2010. That’s when she’ll have to leave her daughter to fend for herself in the scary land of School; where her daughter will no longer be shielded by her mother’s protective arms.
This is a story about a girl who knows she shouldn’t be scared; who doesn’t WANT to be scared. A girl who knows that she’s strong enough handle this. A girl who realizes, at least in her head, that God has promised to take care of her AND HER CHILD.
Shouldn’t and aren’t are two very exclusive concepts. This girl is well aware of that.
I tell you this story because the subject told me I could. She wants people to know that she struggles with accepting the life God’s given her. She thinks it’s important that people, especially those who are walking in similar shoes, realize that she’s not as strong as she sometimes pretends to be. She even wants you to know that she’s scared. Not because she needs sympathy, but because she desires validation. Recognize her fears are real. Acknowledge that her future is scary. And love her, love her daughter, love who they’re going to become despite of the fear.
I can say with confidence that she thanks you.
Gen. 15: 19
Let me tell you a story about a girl. A vertically-challenged, natural curly-haired, glasses-wearing girl. A girl with a voice loud enough to startle a sleeping baby. A girl who laughs more than she cries. A girl who answers, “wicked awesome!” when asked how things are going. A girl who is often told that she has things together, that she’s a great mom, that her daughter is so lucky to have such encouraging parents.
A girl who’s so comfortable hiding behind her mask it’s become her second skin; a protective outer layer that’s painful to peal off.
A girl who, deep down, lives in constant fear.
This is a girl who spends a lot of precious energy trying to cover up her fatigue. She’s often tired because she spends the nights in timid thought, listing her fears.
She’s scared that the next time someone says, “Your kid reminds me of a Golden Retriever I once had; he would drool everywhere too”, her daughter will be within ear-shot and will be old enough to understand.
She’s terrified of the day when her daughter becomes so heavy that her mom and babysitter find it difficult to care for her anymore.
She dreads the day her daughter asks, “Why don’t my legs work, Mommy?”
She’s fearful of running out of therapy and surgery money.
She’s frightened of September, 2010. That’s when she’ll have to leave her daughter to fend for herself in the scary land of School; where her daughter will no longer be shielded by her mother’s protective arms.
This is a story about a girl who knows she shouldn’t be scared; who doesn’t WANT to be scared. A girl who knows that she’s strong enough handle this. A girl who realizes, at least in her head, that God has promised to take care of her AND HER CHILD.
Shouldn’t and aren’t are two very exclusive concepts. This girl is well aware of that.
I tell you this story because the subject told me I could. She wants people to know that she struggles with accepting the life God’s given her. She thinks it’s important that people, especially those who are walking in similar shoes, realize that she’s not as strong as she sometimes pretends to be. She even wants you to know that she’s scared. Not because she needs sympathy, but because she desires validation. Recognize her fears are real. Acknowledge that her future is scary. And love her, love her daughter, love who they’re going to become despite of the fear.
I can say with confidence that she thanks you.
Gratitude Revisted
I haven't listed in a while, so it's about time to be
THANKFUL:
1) That the air conditioning installation at work is *almost* complete. It's been HOT this week!
2) That Ellie counted to five all by herself this morning.
3) That my gimped up toe is healing. (I had an "incident" in a taxi in Las Vegas and when it was all over, my toe nail was gone. Guh-ross.)
4) That Richie and I have jobs. (Bonus points: jobs we LOVE!)
THANKFUL:
1) That the air conditioning installation at work is *almost* complete. It's been HOT this week!
2) That Ellie counted to five all by herself this morning.
3) That my gimped up toe is healing. (I had an "incident" in a taxi in Las Vegas and when it was all over, my toe nail was gone. Guh-ross.)
4) That Richie and I have jobs. (Bonus points: jobs we LOVE!)
5) That I'm going to have a nephew in three months!
6) That smart people decide to devote 10+ years of their lives to study in medical school and become physiatrists, orthopedic surgeons, ophthalmologists, etc.
7) That a $20 pool makes Ellie just as happy as an inground fancy-smancy aquatic wonderland:
8) That we got to sleep in this morning (8:30, baby!).
9) That my flowers are FINALLY looking half-way purty.
10) That it's only 39 days till Alabama's opener!!
Thursday, July 17, 2008
Ellie And Her Friends
Little Miss Ellie had a wild weekend of socializing. Good thing her mom and dad keep the house clean and lots of Pepsi in the fridge.
Notice how I'm laughing as my daughter beats up the sweet baby. And I wonder why my friends refuse to bring their children to my house...
Notice how I'm laughing as my daughter beats up the sweet baby. And I wonder why my friends refuse to bring their children to my house...
Tuesday, July 15, 2008
Lattes and Elevators
Vegas hotels are MONSTROSITIES. They’re also out to suck you dry of every penny you’ve brought with you (and those you left at home and are accessible through an ATM). Thus, there are no smile-inducing four-cup coffee makers in the rooms. Oh no. There are, however, plenty of coffee shops and Starbucks in and around the casino, happily willing to quench your caffeine addiction at 10:00am….for $4.00 a cup.
Needless to say, I made my way down to our hotel’s Starbucks a time or two, as Richie continued to sleep off his 3am poker headache. It was while there, while waiting in line for my grande raspberry coffee, that I “met” a sweet and inspiring couple. I don’t know their names, I don’t know where they’re from, I don’t know what brought them to Vegas. But, I know that they touched my heart.
I watched closely (trying not to cross the line of voyeurism) as both the girl and the guy maneuvered their wheelchairs through the Starbucks line. I admired the way they held hands and giggled while ordering their lattes. I focused sharply on how easily they were able to reach over the low counter and pay for their java. My eyes followed them to their table, where one carefully removed the dining chair, making room for his wheelchair to pull up, while the other one lifted herself from her wheelchair to the dining seat, straining her face as she shifted her weight and pushed herself in.
And there they sat. Holding hands. Sipping fresh coffee. Laughing. Glowing. Discussing the day’s events.
Just like Richard and I would have sat at the table, excitedly planning our touristy adventures for the day. Just like Richard and I would have laughed over an inside joke. Just like Richard and I would have stopped mid-sentence to enjoy the sparkle in each other’s eyes.
I was inspired. You all know WHY it was inspiring and why my heart skipped a beat. A magical moment of hope warmed my body as I watched this cute couple at Starbucks. Hope for my sweet, sweet baby. Hope that, no matter how she gets around, there will be a Vegas for Ellie. And someone to giggle with at the hotel’s Starbucks.
Since Ellie was diagnosed with cerebral palsy, and I’ve started to come to terms with the fact that she’ll likely use a wheelchair for mobility, I’ve seen the world through different eyes. I see stairs. I see high counters. I see narrow aisles. I see heavy doors. I see a world that is made for the walking, and it makes me sad and angry.
Yet, in Vegas, I allowed myself to see something different. I’m not sure if my heart was softened and able to see the glass as half full, or if Las Vegas is just a lot more handicapped-accessible. Regardless, I was truly inspired by all the people who vacationed in wheelchairs, and were able (from what I saw) to get around quite nicely. The buses had lifts, there were tons of taxis with visible “wheelchair sign” decals, there were lower counters at the check-in desks, there were elevators everywhere, even the slot machines were perfect wheelchair height (they’re not DUMB!).
So, maybe there are other Vegas’ out there. Maybe, just maybe, sweet Ellie will be able to travel the world. Maybe she’ll be able to go far and away for her honeymoon. Maybe she’ll be able to wake up in the morning and wheel herself down for a cup of Starbucks while her extremely caring and ever-attentive husband sleeps in. THAT’s a cup of coffee worth $4.00.
Needless to say, I made my way down to our hotel’s Starbucks a time or two, as Richie continued to sleep off his 3am poker headache. It was while there, while waiting in line for my grande raspberry coffee, that I “met” a sweet and inspiring couple. I don’t know their names, I don’t know where they’re from, I don’t know what brought them to Vegas. But, I know that they touched my heart.
I watched closely (trying not to cross the line of voyeurism) as both the girl and the guy maneuvered their wheelchairs through the Starbucks line. I admired the way they held hands and giggled while ordering their lattes. I focused sharply on how easily they were able to reach over the low counter and pay for their java. My eyes followed them to their table, where one carefully removed the dining chair, making room for his wheelchair to pull up, while the other one lifted herself from her wheelchair to the dining seat, straining her face as she shifted her weight and pushed herself in.
And there they sat. Holding hands. Sipping fresh coffee. Laughing. Glowing. Discussing the day’s events.
Just like Richard and I would have sat at the table, excitedly planning our touristy adventures for the day. Just like Richard and I would have laughed over an inside joke. Just like Richard and I would have stopped mid-sentence to enjoy the sparkle in each other’s eyes.
I was inspired. You all know WHY it was inspiring and why my heart skipped a beat. A magical moment of hope warmed my body as I watched this cute couple at Starbucks. Hope for my sweet, sweet baby. Hope that, no matter how she gets around, there will be a Vegas for Ellie. And someone to giggle with at the hotel’s Starbucks.
Since Ellie was diagnosed with cerebral palsy, and I’ve started to come to terms with the fact that she’ll likely use a wheelchair for mobility, I’ve seen the world through different eyes. I see stairs. I see high counters. I see narrow aisles. I see heavy doors. I see a world that is made for the walking, and it makes me sad and angry.
Yet, in Vegas, I allowed myself to see something different. I’m not sure if my heart was softened and able to see the glass as half full, or if Las Vegas is just a lot more handicapped-accessible. Regardless, I was truly inspired by all the people who vacationed in wheelchairs, and were able (from what I saw) to get around quite nicely. The buses had lifts, there were tons of taxis with visible “wheelchair sign” decals, there were lower counters at the check-in desks, there were elevators everywhere, even the slot machines were perfect wheelchair height (they’re not DUMB!).
So, maybe there are other Vegas’ out there. Maybe, just maybe, sweet Ellie will be able to travel the world. Maybe she’ll be able to go far and away for her honeymoon. Maybe she’ll be able to wake up in the morning and wheel herself down for a cup of Starbucks while her extremely caring and ever-attentive husband sleeps in. THAT’s a cup of coffee worth $4.00.
Tuesday, July 1, 2008
Whirlwind!
I'm super-dooper tired (why does 8 hours of driving, sitting on your butt doing nothing, make you feel so whipped?!), so this will be short. I know many of you have been praying for, thinking of, and loving us, so I wanted to quickly update on our Minneapolis Shriner's adventure.
First of all, I must boast! My daughter is seriously the most rockstar toddler ever. In the 16 hours we spent in the car, driving to and from the Twin Cities, I think she whined twice. And even then, she was easily consoled with a lively rendition of "If You're Happy and You Know It" or her beloved Elmo DVD. She is such a trooper!
We were able to hang out with fabulous BFFs on Sunday, and it was SUCH a wonderful day. Hanging out with these friends would have, on its own, made the trip worth it. Thank you for your amazing hospitality, PM and co.!
And then came the "Shriner's Day". What an absolutely amazing place. Several times during our 7 hour stay at the hospital, I caught myself saying, "This is truly unbelievable." EVERY single person we came in contact with was fantastically helpful, friendly and nice. Believe me, that is NOT something you say of most hospitals. We were taken such good care of, and we never felt rushed or trivialized.
We first met with the doctor. She was fantastic. A true answer to every prayer. After ten minutes of "chit chat" and introductions, I felt that reassurance again. This was another trustworthy doctor and I could feel my breathing calm down. She spent a long time with us, answering each question thoroughly.
We asked about SDR. Dr. Gyr said that it would be her professional opinion that we should wait until Ellie was at least five years old before even contemplating this surgery. She had some cautious words to say about St. Louis, and told us about her experiences with SDR (which were intensive). Everything she had to say made sense (this is not to say that EVERY child should wait until they're five until they undergo SDR, but given some of Ellie's issues, the doctor believed it would be in ELLIE'S best interest). Everything she had to say calmed my heart. Everything she had to say, even if it wasn't completely positive or hopeful, made me thank God, because she was the kind of doctor I was hoping for. Someone who was honest, yet delicate.
We asked about Botox. Dr. Gyr thought that we should wait a bit on that too, but maybe by next summer, Ellie would be a good candidate for that. Again, her reasons for wanting to wait on Botox treatment made perfect sense, and she explained herself in a way that even *I* could understand!
We asked about a Baclofen pump (something we have researched very little). Dr. Gyr said that she thought the pump may be a really good option for Ellie. However, because the pump is the size of a hockey puck, Ellie would have to be bigger before we could talk seriously about it. Again, perfect sense. Perfect explanation.
The doctor ordered x-rays of Ellie's hips while we were there (the equipment at Shriner's is state of the art, for real!). Dr. Gyr went through her x-ray evaluation with us, and showed us why she was concerned about Ellie's hips. Her right hip is nearly out of the socket, and she was fairly certain that Ellie would need surgery sooner than later (probably within the next 18 months) to lengthen the tendon. Every one of our doctors has said this, so it wasn't shocking. It was actually nice to know that everyone is on the same page for once!
Then, the doctor and two therapists examined Ellie's AFOs (leg braces). They all agreed that they were too bulky and need some "tweaking". Again, they have a state of the art on-site lab, and they make their own braces there. It was really awesome to see what they could do with Ellie's braces. Now we need to step up to the plate and force little Missy to wear them (they're not Ellie's favorite, since they inhibit her crawling and sitting sometimes). The braces stretch out her tendons, which will help stave off surgeries, so they're definitely worth it. The Shriner's therapists figured that she'd probably outgrow her current braces within six months, so our next pair they'll make from scratch. This was probably the most blatant example of private vs. public healthcare. Even though we were able to get AFOs through our government health insurance, they weren't the "best" quality, because of major monetary concerns. This is why teaming up with Shriner's is such a blessing: more opinions, better equipment, at no cost. Can't get better than that.
We made a follow-up appointment for January (we'll get new x-rays of Ellie's hips to check on the bad socket, and we'll probably get new AFOs made). All expenses, once again, will be paid. ROCK ON.
They also invited Ellie to Aquatic Therapy camp next summer (it's one week long), so we may be making the Minneapolis trek a few more times!
Was it worth the time, the 8 hours one-way in the car, the not-so-fab hotel sleep? ABSOLUTELY. We added amazingly talented and WISE people to our team of "People Who Love Ellie and Want To See Her Reach Her Highest Potential". That's worth the drive.
THANK YOU for your prayers, loved ones. They are coveted more than you know!
I'll fire off a "What now?" post tomorrow...after a good night's sleep in my own bed. So, I leave you tonight with some pictures from our weekend...
The outside of the hospital. It is SERIOUSLY nice and in a swankidy-swank neighborhood (we felt right at home, ha!)
First of all, I must boast! My daughter is seriously the most rockstar toddler ever. In the 16 hours we spent in the car, driving to and from the Twin Cities, I think she whined twice. And even then, she was easily consoled with a lively rendition of "If You're Happy and You Know It" or her beloved Elmo DVD. She is such a trooper!
We were able to hang out with fabulous BFFs on Sunday, and it was SUCH a wonderful day. Hanging out with these friends would have, on its own, made the trip worth it. Thank you for your amazing hospitality, PM and co.!
And then came the "Shriner's Day". What an absolutely amazing place. Several times during our 7 hour stay at the hospital, I caught myself saying, "This is truly unbelievable." EVERY single person we came in contact with was fantastically helpful, friendly and nice. Believe me, that is NOT something you say of most hospitals. We were taken such good care of, and we never felt rushed or trivialized.
We first met with the doctor. She was fantastic. A true answer to every prayer. After ten minutes of "chit chat" and introductions, I felt that reassurance again. This was another trustworthy doctor and I could feel my breathing calm down. She spent a long time with us, answering each question thoroughly.
We asked about SDR. Dr. Gyr said that it would be her professional opinion that we should wait until Ellie was at least five years old before even contemplating this surgery. She had some cautious words to say about St. Louis, and told us about her experiences with SDR (which were intensive). Everything she had to say made sense (this is not to say that EVERY child should wait until they're five until they undergo SDR, but given some of Ellie's issues, the doctor believed it would be in ELLIE'S best interest). Everything she had to say calmed my heart. Everything she had to say, even if it wasn't completely positive or hopeful, made me thank God, because she was the kind of doctor I was hoping for. Someone who was honest, yet delicate.
We asked about Botox. Dr. Gyr thought that we should wait a bit on that too, but maybe by next summer, Ellie would be a good candidate for that. Again, her reasons for wanting to wait on Botox treatment made perfect sense, and she explained herself in a way that even *I* could understand!
We asked about a Baclofen pump (something we have researched very little). Dr. Gyr said that she thought the pump may be a really good option for Ellie. However, because the pump is the size of a hockey puck, Ellie would have to be bigger before we could talk seriously about it. Again, perfect sense. Perfect explanation.
The doctor ordered x-rays of Ellie's hips while we were there (the equipment at Shriner's is state of the art, for real!). Dr. Gyr went through her x-ray evaluation with us, and showed us why she was concerned about Ellie's hips. Her right hip is nearly out of the socket, and she was fairly certain that Ellie would need surgery sooner than later (probably within the next 18 months) to lengthen the tendon. Every one of our doctors has said this, so it wasn't shocking. It was actually nice to know that everyone is on the same page for once!
Then, the doctor and two therapists examined Ellie's AFOs (leg braces). They all agreed that they were too bulky and need some "tweaking". Again, they have a state of the art on-site lab, and they make their own braces there. It was really awesome to see what they could do with Ellie's braces. Now we need to step up to the plate and force little Missy to wear them (they're not Ellie's favorite, since they inhibit her crawling and sitting sometimes). The braces stretch out her tendons, which will help stave off surgeries, so they're definitely worth it. The Shriner's therapists figured that she'd probably outgrow her current braces within six months, so our next pair they'll make from scratch. This was probably the most blatant example of private vs. public healthcare. Even though we were able to get AFOs through our government health insurance, they weren't the "best" quality, because of major monetary concerns. This is why teaming up with Shriner's is such a blessing: more opinions, better equipment, at no cost. Can't get better than that.
We made a follow-up appointment for January (we'll get new x-rays of Ellie's hips to check on the bad socket, and we'll probably get new AFOs made). All expenses, once again, will be paid. ROCK ON.
They also invited Ellie to Aquatic Therapy camp next summer (it's one week long), so we may be making the Minneapolis trek a few more times!
Was it worth the time, the 8 hours one-way in the car, the not-so-fab hotel sleep? ABSOLUTELY. We added amazingly talented and WISE people to our team of "People Who Love Ellie and Want To See Her Reach Her Highest Potential". That's worth the drive.
THANK YOU for your prayers, loved ones. They are coveted more than you know!
I'll fire off a "What now?" post tomorrow...after a good night's sleep in my own bed. So, I leave you tonight with some pictures from our weekend...
The outside of the hospital. It is SERIOUSLY nice and in a swankidy-swank neighborhood (we felt right at home, ha!)
They have kiddie video games in the waiting room...a Richie-and-Ellie dream come true!
Coloring in the waiting room...
She gets her atristry from her mother FO SHO!
The new AFOs and, of course, the new stuffed bear...
Miss Ellie could hardly keep her head up during our quick after-hospital supper. Sweet baby was SO tired!
Coloring in the waiting room...
She gets her atristry from her mother FO SHO!
The new AFOs and, of course, the new stuffed bear...
Miss Ellie could hardly keep her head up during our quick after-hospital supper. Sweet baby was SO tired!
This is What We Do In Minneapolis...
We go to Ikea for .99 breakfast (and to salivate over the furniture)...
...and we DEFINITELY wear the cool Ikea bib...
...and then we visit BFFs and lose to The (5 year old) Boy playing Dance Dance Revolution...
...and we DEFINITELY wear the cool Ikea bib...
...and then we visit BFFs and lose to The (5 year old) Boy playing Dance Dance Revolution...
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