I have some quite wonderful pictures and stories to go with them to post on this blog. It will take some time...because there are so many. Because there are so many wonderful people who love our wonderful little girl and who know how to show her a wonderful time. Those are the peaks in this roller coaster we're living. In fact, the roller coaster mainly consists of summits. Last Friday was one of the tallest peaks of this ride so far (more on that later). The dips between those peaks are small. Usually.
Today and yesterday, though, are deep emotional valleys for me. If you have been around me these last few days, maybe you've noticed, maybe you haven't. Something has been weighing on me, deep down, where I don't want to dwell on it...so I try not to. Because I can't DO anything about it. It's not a problem that can be resolved with some phone calls or organization or planning. I'm not a control freak. I'm perfectly content to do my best to combat an issue and know that I've done my best. The outcome is what it is, and my God is a good and loving God who does all things for my good and the good of my child. But this particular issue...well, it's a problem that I have been so desperately afraid of facing since October 9, 2009, the day we found out that Emma had spina bifida.
Emma was invited to play with the kids in her preschool class. Did you read what I just typed? PLAY. PLAY. With other 2-year-olds. Who don't understand how to play with a little girl in a wheelchair, or a little girl who can only crawl on the floor. There are precious 7-year-olds out there who understand, but her peers don't.
A very, very nice mom in Emma's class sent out an email inviting all the parents and their kids over to play. My kneejerk reaction was, "Aw, fun!" WHAM! Then I was hit with the vision of Emma sitting in her chair, alone, watching the other 2-year-olds run in circles, jump in and out of a sandbox, climb a ladder, go down a slide, and pick up toys off the ground. (Did you know that Emma can't pick up a toy if she drops it?)
As I posted recently, I do not grieve Emma's fierce independence. I do, however, grieve the injustices that are inherent to her existence. Hear me when I say INHERENT. Right now, it's no one's fault. I want her to play with other kids, especially when they're too young to know much of a difference between her and them. I welcome her curiosity in things, places, and people outside of our environment. That all sounds great until I have the vision again - my innocent child, alone, at the edge of the yard, with her beautiful blonde curls tied back in bows, hands at the ready on her wheelchair wheels, watching, waiting for an opportunity to do something "normal," judging whether she can do that one particular thing right there that that kid's doing. How long does it take your child to take one step onto the grass? A millisecond. How long does it take mine? Forever. Never. Because she can't push her wheelchair through it. I'm so afraid of Emma's epiphany...you know it will happen one day. There will be a blinding realization in her innocent little mind, and she will be forever changed. Perhaps she will feel like she's been punched in the gut. Perhaps she will feel defeated. Maybe angry. She will forever know that she is disabled and will always be at a disadvantage, and there is nothing that anyone can do about it, especially (and ironically) not her. That single, solitary, earth-shattering moment in her life is the point of no return, and I am desperately afraid that it will happen at a playdate.
Call this a pity party. Call me lame. Call me a whiner. Call me when you go through it yourself.
The slow ascent to the next peak? The memory of another of Emma's classmate's mom, the mom of a little girl with 2 big brothers, the wife of someone I know from childhood....the mom who insisted more times than I can count that just her daughter and Emma get together and play. Not because she took pity on me or Emma. But because we live so close. And because her daughter needs the influence of a little girl who likes to play with dolls and tea sets, instead of 2 big brothers who like to play with dirt, poop, sticks, and dirt. Who cares about a wheelchair? As long as it's not covered in dirt, sweat, or duct tape and can be used to have a tea party, nothing else matters.
Monday, September 24, 2012
Tuesday, September 11, 2012
Upload Update
Here are the latest from my cell phone:
Breakfast in bed with Daddy:
Sleeping beauty:
Learning how to sleep in her big girl bed at Nan's. This has only happened once because Emma LOVES it. She thinks it's a great place to play. And my mom has taught her to call it her schoolgirl bed (since big girls are schoolgirls, and schoolgirls sleep in beds, not cribs).
Breakfast in bed with Daddy:
Sleeping beauty:
Learning how to sleep in her big girl bed at Nan's. This has only happened once because Emma LOVES it. She thinks it's a great place to play. And my mom has taught her to call it her schoolgirl bed (since big girls are schoolgirls, and schoolgirls sleep in beds, not cribs).
Wednesday, September 5, 2012
Toddler Words
I was getting Emma all excited to go to Shriner's this morning, but it didn't quite have the effect I thought it would. I did get the opportunity to hear another toddler word - those words that preschoolers say that aren't quiiiiite right....off by a letter or two and they end up sounding PRECIOUS. More on that in a bit. The effect I was hoping for was calmness, complacency, perhaps even a willingness to lie down on the exam tables and have her tests done. Nope.
The tests don't hurt one bit, but Emma still got pretty freaked out by having to lie down on the tables. It scared her A LOT. I had to be the heavy and force her down, but she finally calmed down with a few Mickey Mouse Clubhouse episodes on my phone. The results of Emma's tests were good - nothing to worry about :)
Here's the video I managed to catch at a stoplight on the way to Shriner's this morning. The toddler words to be on the lookout for are:
STriner's (instead of Shriner's),
ESMuse me (instead of Excuse me); and
SCunscreen (instead of sunscreen)
The tests don't hurt one bit, but Emma still got pretty freaked out by having to lie down on the tables. It scared her A LOT. I had to be the heavy and force her down, but she finally calmed down with a few Mickey Mouse Clubhouse episodes on my phone. The results of Emma's tests were good - nothing to worry about :)
Here's the video I managed to catch at a stoplight on the way to Shriner's this morning. The toddler words to be on the lookout for are:
STriner's (instead of Shriner's),
ESMuse me (instead of Excuse me); and
SCunscreen (instead of sunscreen)
Monday, September 3, 2012
Remember all that depressing news?
There was a time when this blog was filled with updates on some not-so-upbeat news about Emma's medical condition. I've just realized that the topics of my blog posts have become increasingly less about Emma's health issues and more about her being a normal child. Rejoice!
That still doesn't mean that Emma is without her problems. I certainly do not dwell on them, but people frequently ask us how she's doing. Most people want to know how she's DOING, not just how-is-she?-she's-fine-thanks. So here's my best attempt at a recap of Emma's health:
Emma goes to Shriner's on Wednesday for a bladder pressure and capacity test, which she has failed every time recently because she's two. It's hard to get a reading on her bladder's natural capacity and natural pressure because the squirmy worm wiggles and puts pressure on her bladder, causing it to empty....blah blah blah. Nothing they're worried about, but this test won't really be meaningful until she understands what it means to lie still and actually do it. She will also have a renal ultrasound to ensure that urine is not refluxing from her bladder back into her kidneys. This test usually turns out just fine.
Emma is about 26.5 pounds, and I think around 32.5 inches long. She is very short for her age, due to two things: neither Russell nor I are large in stature, and kids with SB are shorter anyway because they don't really bear weight on their legs. Weight-bearing exercise is what causes bones to grow long and strong.
Our biggest battle is the choking. Any of you who have been around her for a length of time know what I'm talking about. You know that awful feeling when you swallow a drink and it goes down the wrong pipe? You just took a big deep breath even thinking about it, didn't you? Well that happens to Emma several times a day with her saliva. Sometimes they are worse than others, and her nose and mouth turn blue because she can't catch her breath. Her body's natural reactions are fighting each other: her diaphragm is working hard to cough and expel the liquid from her airway, but her lungs are trying to inhale through the airway. Sometimes it's so bad that she briefly loses consciousness, her eyes roll back in her head, her whole face turns blue, and her body goes limp...and it scares the bejeebies out of everyone around her. I'm just waiting to get a phone call from her preschool telling me that she had one of these episodes and that they don't feel comfortable keeping her anymore. There's nothing you can do to help Emma in any of these choking scenarios...she has to just come out of it on her own.
Emma's voice is always a little hoarse because all that choking and coughing has stressed her vocal chords. She doesn't sound like a man trapped in a 2-year-old's body or anything, but her voice isn't as high-pitched as other 2-year-olds'.
She still wears her bipap mask at night and during naps. We all hate it, Emma included.
Emma is working hard at therapy, and she has a walking gait down pat. However, her balance still isn't good enough to be in an independent walker. She's still walking in a walker that helps her balance her upper body. She's in her 3rd pair of AFO's, and she has a set of twister straps that help rotate her hips out when she walks because one of them in particular has the tendency to rotate in.
She has a full set of teeth and hates having them brushed. I would, too, if I had to use that nasty toothpaste that apparently all toothpaste companies think children love because it's the only flavor anyone makes.
Emma eats really well, and if she's in a bad mood and doesn't want to eat what we're trying to give her, she will make herself gag. Her gag reflex is very sensitive anyway, and now she has figured out how to activate it herself. Lovely. We have to tell her to slow down all the time, and we have to really watch how much water she gulps down from a sippy cup. Even though she can drink water without choking on it, she tends to get carried away and tries to take down half the cup at once. The ONLY thing she drinks is water and can't stand milk or juice (Doctors and dentists love this about her - so much better for her teeth and sugar intake!)
We are pretty sure that Emma has no feeling from her knees down. Right up above her knees we think she has some feeling, but past that it's definitely nothing.
The thing I forget about her having is a shunt. This is a really big deal to other SB moms, but in light of everything else we deal with, I don't even think about it.
So there's your medical update. It's a lot of random information to throw together. Imagine being her preschool teachers and having all this thrown at you. Yikes. Thank goodness she's well-behaved!
That still doesn't mean that Emma is without her problems. I certainly do not dwell on them, but people frequently ask us how she's doing. Most people want to know how she's DOING, not just how-is-she?-she's-fine-thanks. So here's my best attempt at a recap of Emma's health:
Emma goes to Shriner's on Wednesday for a bladder pressure and capacity test, which she has failed every time recently because she's two. It's hard to get a reading on her bladder's natural capacity and natural pressure because the squirmy worm wiggles and puts pressure on her bladder, causing it to empty....blah blah blah. Nothing they're worried about, but this test won't really be meaningful until she understands what it means to lie still and actually do it. She will also have a renal ultrasound to ensure that urine is not refluxing from her bladder back into her kidneys. This test usually turns out just fine.
Emma is about 26.5 pounds, and I think around 32.5 inches long. She is very short for her age, due to two things: neither Russell nor I are large in stature, and kids with SB are shorter anyway because they don't really bear weight on their legs. Weight-bearing exercise is what causes bones to grow long and strong.
Our biggest battle is the choking. Any of you who have been around her for a length of time know what I'm talking about. You know that awful feeling when you swallow a drink and it goes down the wrong pipe? You just took a big deep breath even thinking about it, didn't you? Well that happens to Emma several times a day with her saliva. Sometimes they are worse than others, and her nose and mouth turn blue because she can't catch her breath. Her body's natural reactions are fighting each other: her diaphragm is working hard to cough and expel the liquid from her airway, but her lungs are trying to inhale through the airway. Sometimes it's so bad that she briefly loses consciousness, her eyes roll back in her head, her whole face turns blue, and her body goes limp...and it scares the bejeebies out of everyone around her. I'm just waiting to get a phone call from her preschool telling me that she had one of these episodes and that they don't feel comfortable keeping her anymore. There's nothing you can do to help Emma in any of these choking scenarios...she has to just come out of it on her own.
Emma's voice is always a little hoarse because all that choking and coughing has stressed her vocal chords. She doesn't sound like a man trapped in a 2-year-old's body or anything, but her voice isn't as high-pitched as other 2-year-olds'.
She still wears her bipap mask at night and during naps. We all hate it, Emma included.
Emma is working hard at therapy, and she has a walking gait down pat. However, her balance still isn't good enough to be in an independent walker. She's still walking in a walker that helps her balance her upper body. She's in her 3rd pair of AFO's, and she has a set of twister straps that help rotate her hips out when she walks because one of them in particular has the tendency to rotate in.
She has a full set of teeth and hates having them brushed. I would, too, if I had to use that nasty toothpaste that apparently all toothpaste companies think children love because it's the only flavor anyone makes.
Emma eats really well, and if she's in a bad mood and doesn't want to eat what we're trying to give her, she will make herself gag. Her gag reflex is very sensitive anyway, and now she has figured out how to activate it herself. Lovely. We have to tell her to slow down all the time, and we have to really watch how much water she gulps down from a sippy cup. Even though she can drink water without choking on it, she tends to get carried away and tries to take down half the cup at once. The ONLY thing she drinks is water and can't stand milk or juice (Doctors and dentists love this about her - so much better for her teeth and sugar intake!)
We are pretty sure that Emma has no feeling from her knees down. Right up above her knees we think she has some feeling, but past that it's definitely nothing.
The thing I forget about her having is a shunt. This is a really big deal to other SB moms, but in light of everything else we deal with, I don't even think about it.
So there's your medical update. It's a lot of random information to throw together. Imagine being her preschool teachers and having all this thrown at you. Yikes. Thank goodness she's well-behaved!
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