I was helping Hannah practice walking with her forearm crutches tonight (which she asked to do) when she turned to me and said, "Mommy, I just REALLY want to walk without any adult's help. I have a walker and crutches and glasses, and it's taking SO LONG for me to learn how to do it on my own." And then she added, "And my belly hurts, too."
I'm so glad she added the belly hurting part because it made me realize that for Hannah, at least right now, she sees her limitations as a frustrating obstacle like a belly ache, and she doesn't attach all the other emotional baggage to it that we (the adults in her life) all do. I know this won't last forever but I'm glad that for now, this is where she's at with it.
It's so tempting to respond to these comments by saying, "Well, if you work hard enough, someday you WILL walk on your own without anyone's help" because this may not be true, and it won't be because she didn't work hard enough. So I try to tell her that we are working on getting her stronger and more independent using her walker and then maybe someday, using crutches. And I acknowledge that it stinks and is frustrating that she can't do it on her own right now.
I so admire her four year old approach to her disability, because from the outside it does not seem to cause her to act victimized, defeated or discouraged by her limits. It is simply the way it is for her. I want to try to be more like her.
Thursday, February 4, 2010
Thursday, January 7, 2010
It's the little things
Watching Hannah move through different stages of development, these little things pop up now and again that remind me of just how much of an impact her CP has on every aspect of her (and our) life. And a lot of the time, it's these little things that can really get me down much more so than the big picture.
The big one lately is shoes. Shoes are a MAJOR issue in our house. First of all, finding shoes that can fit over orthotics is no small feat. And then there's the fact that sometimes very independent four year olds don't WANT to wear their orthotics. So it's nice to have a pair or two around that can work without them, for those hanging around the house days when we just want to take a break from strapping her feet into the hard plastic forms. But that's another feat of the feet because Hannah's are so narrow and small, and because when she walks, she doesn't plant her feet firmly on the ground and they just kind of float in space sometimes. So if a shoe is not totally snug on her foot it falls off. And if it doesn't have a good tread on the bottom she slides all over the place. So most slippers are out.
When you look around at the average preschooler (at least in our neck of the woods, anyway) one of the most popular shoes are those really cute kiddie mud boots with fun prints of animals or other cool things on them. So what does Hannah want to wear? Without her orthotics, they are a total no-go because they fall off. And with orthotics, she can't fit into mud boots at all. So in the land of "mud season" we are very ill-equipped.
Then there's dress-up shoes. All kids love to play dress up and tromp around in their parents' shoes. Hannah just can't do it. She tries, oh she tries. She has tried on almost every pair of my shoes in an effort to find one that will stay on so she can walk around in them like Isabelle does. But she can't keep them on her feet long enough to give it a try. We also have a box of plastic dress shoes B got at a yard sale. Silly, fun high heeled shoes that are made for kids to play with. Again, Hannah can't keep a single pair on her feet. Thankfully in this box of shoes is also a pair of red sparkly buckle shoes just like Dorothy's in the Wizard of Oz. Without orthotics they fall off, but with orthotics they fit well enough that she can stomp around the house.
She is NOT happy at all at having to wear her orthotics with these sparkly dress up shoes. I don't blame her. It sort of defeats the purpose. Dress up is all about becoming someone else and leaving your regular orthotic wearing self behind. But today I convinced her that the best way to experience the magic of these shoes and keep them on her feet was to wear her orthotics, and how wonderful that the shoes fit with them on. She begrudgingly agreed and now wants to have them on 24/7.
Today it's shoes, tomorrow it will be something else. These little things are hard in a big way.
The big one lately is shoes. Shoes are a MAJOR issue in our house. First of all, finding shoes that can fit over orthotics is no small feat. And then there's the fact that sometimes very independent four year olds don't WANT to wear their orthotics. So it's nice to have a pair or two around that can work without them, for those hanging around the house days when we just want to take a break from strapping her feet into the hard plastic forms. But that's another feat of the feet because Hannah's are so narrow and small, and because when she walks, she doesn't plant her feet firmly on the ground and they just kind of float in space sometimes. So if a shoe is not totally snug on her foot it falls off. And if it doesn't have a good tread on the bottom she slides all over the place. So most slippers are out.
When you look around at the average preschooler (at least in our neck of the woods, anyway) one of the most popular shoes are those really cute kiddie mud boots with fun prints of animals or other cool things on them. So what does Hannah want to wear? Without her orthotics, they are a total no-go because they fall off. And with orthotics, she can't fit into mud boots at all. So in the land of "mud season" we are very ill-equipped.
Then there's dress-up shoes. All kids love to play dress up and tromp around in their parents' shoes. Hannah just can't do it. She tries, oh she tries. She has tried on almost every pair of my shoes in an effort to find one that will stay on so she can walk around in them like Isabelle does. But she can't keep them on her feet long enough to give it a try. We also have a box of plastic dress shoes B got at a yard sale. Silly, fun high heeled shoes that are made for kids to play with. Again, Hannah can't keep a single pair on her feet. Thankfully in this box of shoes is also a pair of red sparkly buckle shoes just like Dorothy's in the Wizard of Oz. Without orthotics they fall off, but with orthotics they fit well enough that she can stomp around the house.
She is NOT happy at all at having to wear her orthotics with these sparkly dress up shoes. I don't blame her. It sort of defeats the purpose. Dress up is all about becoming someone else and leaving your regular orthotic wearing self behind. But today I convinced her that the best way to experience the magic of these shoes and keep them on her feet was to wear her orthotics, and how wonderful that the shoes fit with them on. She begrudgingly agreed and now wants to have them on 24/7.
Today it's shoes, tomorrow it will be something else. These little things are hard in a big way.
Sunday, January 3, 2010
new year's resolutions
The holidays have come and gone and I'm ready to start the new year off with a few resolutions:
-be more patient with the girls: since Sam's arrival, I find myself more in baby mode than in preschooler mode and I often get snappy with the girls when they are just being typical 4 year olds. I'm going to try harder to remember this and enjoy them more at this amazing phase of intellectual growth and development.
-try to get my body back: being pregnant took a big toll on me this time around. Not just gaining weight, but various aches and pains that are still lingering. I also got incredibly out of shape. I'm not going to set myself up for failure by setting the bar TOO high, but I would like to feel stronger, especially in my back and legs. I'd also like to try to encourage my stomach muscles to reunite if possible, as they separated in a BIG way and thus, I am saggy and baggy and very weak in my core.
-get back on the train of making our home more accessible for Hannah: the ramp was a great step, but there's more to do. We still haven't gotten the grab bars for the bathroom and are in need of more stools of various heights. She deserves this added bit of independence, so we'll try hard to make it happen soon.
-re-energize our exercise and strengthening routine for Hannah: another thing that fell by the wayside a bit while I was pregnant and then with Sam's arrival. Now that it's winter and it's harder to get our therapy in naturally as we're out and about, we need to get more creative about ensuring Hannah stays on top of her game. Especially since we're contemplating SDR in the next year, we want to build up her strength as much as we can and also keep her tone in check as she goes through growth spurts. There is an endless amount we could do so again, I want to be sure I don't set myself (or her) up for failure, but I do see some areas where we can make realistic changes and improvements. For instance, I got lazy in not having her do things for herself. B is much better and more patient about this, but I've been taking the shortcuts and not taking time to let Hannah try to dress herself, get herself into and out of her chair, etc. Of course, sometimes we need to move super quickly and I'll need to step in and do it myself, but I'm going to make more of an effort when possible to let her do as much as she can.
-hand off Sam more to B so I can play more with the girls. It's so easy for me, a nursing mom, to take care of 99% of Sam's needs. But B is a great and capable father and I need to remember this and let him do more, especially now while Sam doesn't really care much who is holding or changing him and while the girls DO care and want as much of me as they can get
-and my most important resolution: accepting that no matter how hard I try, there will always be more that needs to be done: more therapy for Hannah, more attention to give the girls and Sam, more projects around the house, more time for myself and my husband. I'm going to work hard at being "good enough" instead of super mom. This one will be the hardest....
Happy 2010.
-be more patient with the girls: since Sam's arrival, I find myself more in baby mode than in preschooler mode and I often get snappy with the girls when they are just being typical 4 year olds. I'm going to try harder to remember this and enjoy them more at this amazing phase of intellectual growth and development.
-try to get my body back: being pregnant took a big toll on me this time around. Not just gaining weight, but various aches and pains that are still lingering. I also got incredibly out of shape. I'm not going to set myself up for failure by setting the bar TOO high, but I would like to feel stronger, especially in my back and legs. I'd also like to try to encourage my stomach muscles to reunite if possible, as they separated in a BIG way and thus, I am saggy and baggy and very weak in my core.
-get back on the train of making our home more accessible for Hannah: the ramp was a great step, but there's more to do. We still haven't gotten the grab bars for the bathroom and are in need of more stools of various heights. She deserves this added bit of independence, so we'll try hard to make it happen soon.
-re-energize our exercise and strengthening routine for Hannah: another thing that fell by the wayside a bit while I was pregnant and then with Sam's arrival. Now that it's winter and it's harder to get our therapy in naturally as we're out and about, we need to get more creative about ensuring Hannah stays on top of her game. Especially since we're contemplating SDR in the next year, we want to build up her strength as much as we can and also keep her tone in check as she goes through growth spurts. There is an endless amount we could do so again, I want to be sure I don't set myself (or her) up for failure, but I do see some areas where we can make realistic changes and improvements. For instance, I got lazy in not having her do things for herself. B is much better and more patient about this, but I've been taking the shortcuts and not taking time to let Hannah try to dress herself, get herself into and out of her chair, etc. Of course, sometimes we need to move super quickly and I'll need to step in and do it myself, but I'm going to make more of an effort when possible to let her do as much as she can.
-hand off Sam more to B so I can play more with the girls. It's so easy for me, a nursing mom, to take care of 99% of Sam's needs. But B is a great and capable father and I need to remember this and let him do more, especially now while Sam doesn't really care much who is holding or changing him and while the girls DO care and want as much of me as they can get
-and my most important resolution: accepting that no matter how hard I try, there will always be more that needs to be done: more therapy for Hannah, more attention to give the girls and Sam, more projects around the house, more time for myself and my husband. I'm going to work hard at being "good enough" instead of super mom. This one will be the hardest....
Happy 2010.
Thursday, December 17, 2009
quick quotables
I've been meaning to jot these latest ones down. They aren't really quotes, more like mispronunciations that are super cute.
Isabelle pronounces saddle (like what you put on a horse) the "sad-la." She also calls the reigns "rangs."
Hannah was getting ready to race Isabelle around the house and she said "On your market, get set, go!"
Cute cute cute!
Isabelle pronounces saddle (like what you put on a horse) the "sad-la." She also calls the reigns "rangs."
Hannah was getting ready to race Isabelle around the house and she said "On your market, get set, go!"
Cute cute cute!
Friday, December 11, 2009
Winter blues
I live in the Northeast and have always loved winter. (Well, mostly. By March the snow does get pretty old.) But I'm a snowboarder and cross country skier and snowshoer and I really appreciate the beauty of a crisp "blue bird day."
Having kids makes winter a little more challenging. They get sick often, it's hard to go potty when they have 15 layers of clothing on and can't move, the snow looks really fun to play in but they get cold pretty quickly, etc etc etc. Add to that a kid with CP and the challenges escalate to new levels. Then throw in an infant and, well, I'm pretty much housebound these days.
The girls are already on their second nasty cold in less than a month, thanks to preschool. Even Sam caught this one-3 months old and he's already getting sick, poor guy. I am SO DONE with seeing crumpled, germ-infested tissues all over the house and can't bear to hear one more person ask me to wipe their nose.
I hope someday I can appreciate the beauty of winter again. In the meantime I'm just going to have to grin and bear it, and wait for spring...
Having kids makes winter a little more challenging. They get sick often, it's hard to go potty when they have 15 layers of clothing on and can't move, the snow looks really fun to play in but they get cold pretty quickly, etc etc etc. Add to that a kid with CP and the challenges escalate to new levels. Then throw in an infant and, well, I'm pretty much housebound these days.
The girls are already on their second nasty cold in less than a month, thanks to preschool. Even Sam caught this one-3 months old and he's already getting sick, poor guy. I am SO DONE with seeing crumpled, germ-infested tissues all over the house and can't bear to hear one more person ask me to wipe their nose.
I hope someday I can appreciate the beauty of winter again. In the meantime I'm just going to have to grin and bear it, and wait for spring...
SAMMY
Our little guy is now 3 months old-how is it that 3 months have gone by in the blink of an eye?! To think that almost a year ago, I found out that I was pregnant with our unexpected Christmas miracle baby. Although it's definitely been a challenge, adding another wee one to our family, it has also been such a gift.
First of all, experiencing a full-term pregnancy, birth and baby has been a marvel. I'm so relaxed and laid back about so many things related to Sam, and feel like I can just enjoy him. I love when the girls are napping or playing with B and I have some quality baby time to just snuggle with him, gaze at him while he nurses, make him smile or coo or giggle.
It helps also that Sam is such an easygoing baby. He's been sleeping through the night (7:30-5ish) since he was about 10 weeks old; he was going at least 5-6 hours for a few weeks before that. During the day, he is pretty happy to just hang out with all of us and watch the flurry of activity going on around him, only getting cranky when it's time to eat or sleep. He's easy to settle and easy to put down, which is really priceless because with the girls around, there's no way I could spend the kind of time I used to spend trying to get them to sleep. He found his thumb early on and while I'm sure parents of thumbsuckers will say "be careful what you wish for," I'm pretty psyched because I think it makes it so much easier for him to fall asleep on his own, without me having to stand on my head and go through some long, drawn out routine. I remember with the girls, not only did it take forever and they had to be sound asleep before I could put them down, but the littlest noise would then wake them up and we'd have to start all over again. Sam must just be used to all the chaos because it doesn't seem to phase him when the girls are right in the next room whopping it up while he's sleeping.
So many times as I'm taking care of Sam, I think about how different things are this time around, and how grateful I am to have this experience and to be able to really just be in the moment with it. It's going by way too fast though...and knowing this is the last baby we'll be having makes it especially bittersweet. It's definitely not easy in our house most days, trying to balance the needs of all 3 little ones, but on balance I have to say that I'm so so so happy we have Sam in our lives:)
Sunday, December 6, 2009
Progress comes at a cost
Two weeks ago our wondergirl took a hard fall out of her walker and got 9 stitches in her chin; one of them was internal because it was such a deep cut. It happened right before bedtime: I was nursing Sam in my PJs, B was getting the girls into theirs, and BOOM. We were running around like the proverbial chickens without heads when we realized how deep a cut it was and that it definitely needed a trip to the ER. Thank God for great neighbors, who drove B and Hannah while I stayed home with Isabelle and Sam. Thankfully it's healing up well and she didn't seem too traumatized by the ordeal (and she had quite the story to share on Thanksgiving). A week later, one day after getting the stitches out, Hannah fell again and this time, she knocked a front tooth loose. It hasn't fallen out yet but it's pretty loose. And in the days in between, she's had lots of other, more minor spills.
It's hard to know exactly what's going on with her and hard also not to totally freak out. I think some of it is probably related to a growth spurt: as she grows, Hannah's muscles don't necessarily lengthen along with the rest of her, thus she gets more tight. And she has to learn how to maneuver a bigger, heavier, longer body. So growing can be a challenge. I also think some of it is due to all of this great stuff that she's been doing lately. With this increased mobility there are more situations when Hannah is at risk for falling. Sometimes I think she is just a hair's width away from stepping right out of her walker and standing or walking on her own, because she is barely holding on. But then she loses her balance and falls like a tree. Another challenge of having CP: Hannah's protective responses/reflexes are just not as good as the rest of ours so she is less apt to throw out her hands or fall on her tush when she falls.
Whatever the reasons, all of this falling has me worked up. Every time I hear a bang or crash I go running, thinking Hannah's hurt herself again. I keep telling her to slow down and be careful, and to pay attention to what she's doing. I need to try to find the balance between fostering her independence and keeping her safe, and it's really a struggle. Hannah was on the phone with my mom the other day and my mom asked what happened with her tooth and Hannah said, "I guess I didn't have such a firm grip on my walker." It breaks my heart to hear how matter-of-fact she is about the limits on her mobility, and I want to give her every opportunity to learn and explore and grow with the minimum amount of encumbrances. But I also don't want to take another trip to the ER...
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