So, even when at peace, some things just stink. Like (1) bad dreams that seem to stay with you all day, making your heart heavy; (2) google panic (mamas you know what I mean!); and (3) sitting with sweet Sammie B and her puzzle tonight, and asking her to put it together. She could not get the pieces to fit exactly in their respective holes (its a big wooden puzzle), but when I asked her to show ME where each piece went, she showed me. Without even looking at the puzzle. So, I realize that she knows EXACTLY where each piece goes (by memory no less), but her eyes or hands or both just won't cooperate in putting them there. And that made my heart sad. Because it must be so frustrating for her. So, yeah, that stinks. And just for tonight, I'm letting myself feel sad about these things that stink.
Tomorrow, however, is a new day.
Thursday, September 9, 2010
Wednesday, September 8, 2010
Partners
On one of my mommy boards, someone posted asking if any of the moms felt like their husbands had a harder time accepting their child's delays than the moms did, and how the couples dealt with it together. One mom answered that it felt like she and her husband each reached the same place of peace and acceptance on their own, and silently, which I think sums up how happened for me and B. We haven't had an easy time as parents. A fabulous time, yes, but easy, not so much. We've carried the heavy burden of worrying about choosing the right doctors and therapists, we've been through eye surgery and an MRI, and we've worried that we were missing something or that the doctors were. We've shared a TON of giggles, love, hugs, and fun, but we haven't done as good of a job of sharing our worries.
Through it all, I guess B's been a little more "quiet" about his struggles than I have (admittedly, I've hit rough patches that were less "quiet"). I think in many ways, we were both afraid to talk about how we felt and our fears, because if the other one was in a better place, we didn't want to drag them into our place of worry. It's been a "quiet" journey. I've had this blog as an outlet, of course (and my mom boards and my supportive friends who've listened and supported and listened some more!) but I worried that B didn't have any real outlets for HIS worries. We've relished in the giggles and fun, but when its come to the hard parts, we've just kind of flubbed our way along, on quiet, parallel journeys. But lately, there's something different. In a good way.
Suddenly, we've found ourselves having "strategy" lunches to talk about things like what to do with that darn PT or to Hopkins or not to Hopkins (we are, we've started the intake process) or whether we think adding another OT session per week is worthwhile or where to find an indoor pool for swimming lessons when we can no longer do them outside. Me and B. Just a couple of grad school kids, all grown-up, married, with an almost two-year old (!), and making some pretty big decisions for our amazing little girl.
Suddenly, silently, we've reached this place where we can throw around terms like "delayed" and "therapeutic pre-schools" and things like that without worrying about the other one falling over. It's refreshing. This is our normal. We are at peace. (We know "peace" is fragile . . . I fear as I type this that this is all fleeting but I feel like I must put this in words to understand it). We love our lives. And, really, there's no one I'd rather be living this life with than B, who is my BEST friend. Finally, finally, it feels like we are not just sharing the good stuff, but sharing each and every part of our journey. And with that, I feel less heavy. More hopeful. Proud of us.
We may get scared along the way. We surely will worry along the way. But here we are. The three of us. And all is good. Really. Really. Really good.
Through it all, I guess B's been a little more "quiet" about his struggles than I have (admittedly, I've hit rough patches that were less "quiet"). I think in many ways, we were both afraid to talk about how we felt and our fears, because if the other one was in a better place, we didn't want to drag them into our place of worry. It's been a "quiet" journey. I've had this blog as an outlet, of course (and my mom boards and my supportive friends who've listened and supported and listened some more!) but I worried that B didn't have any real outlets for HIS worries. We've relished in the giggles and fun, but when its come to the hard parts, we've just kind of flubbed our way along, on quiet, parallel journeys. But lately, there's something different. In a good way.
Suddenly, we've found ourselves having "strategy" lunches to talk about things like what to do with that darn PT or to Hopkins or not to Hopkins (we are, we've started the intake process) or whether we think adding another OT session per week is worthwhile or where to find an indoor pool for swimming lessons when we can no longer do them outside. Me and B. Just a couple of grad school kids, all grown-up, married, with an almost two-year old (!), and making some pretty big decisions for our amazing little girl.
Suddenly, silently, we've reached this place where we can throw around terms like "delayed" and "therapeutic pre-schools" and things like that without worrying about the other one falling over. It's refreshing. This is our normal. We are at peace. (We know "peace" is fragile . . . I fear as I type this that this is all fleeting but I feel like I must put this in words to understand it). We love our lives. And, really, there's no one I'd rather be living this life with than B, who is my BEST friend. Finally, finally, it feels like we are not just sharing the good stuff, but sharing each and every part of our journey. And with that, I feel less heavy. More hopeful. Proud of us.
We may get scared along the way. We surely will worry along the way. But here we are. The three of us. And all is good. Really. Really. Really good.
Thursday, September 2, 2010
FACES
Determination
Pride
Bliss (Cookies!)
Exhaustion
Just a few of my favorite faces from my favorite girl.
Nothing can make me feel more whole again (after a not-so-fab day) than coming home to her sweet face and having a little family time . . . so suddenly, even though my world still feels mixed up, and I had to work for hours after the rest of the world slept to make up for a day of spinning my wheels and getting no work done, I feel like exhaling and falling into bed with my two favorite people. So, I'll do just that.
Pride
Bliss (Cookies!)
Exhaustion
Just a few of my favorite faces from my favorite girl.
Nothing can make me feel more whole again (after a not-so-fab day) than coming home to her sweet face and having a little family time . . . so suddenly, even though my world still feels mixed up, and I had to work for hours after the rest of the world slept to make up for a day of spinning my wheels and getting no work done, I feel like exhaling and falling into bed with my two favorite people. So, I'll do just that.
Wednesday, September 1, 2010
Too All-Over-The-Place For a Title
My mind (and our lives) are so all over the place right now, so this post will for sure reflect that. So, I bullet-point (with just two really long bullet points apparently!):
- To Hopkins or not to Hopkins?
After Sam was "diagnosed" with hypotonia (low-tone), I immediately hit google. Sometime along the way, I learned about a hypotonia center at John Hopkins in Baltimore. I told B about it and we sort of kept it in the back of our heads as an option for later. Then, recently, someone I connected with on my mom's board wrote about taking her son to the clinic and for the first time feeling like someone -- a doctor -- was going out of his way to proactively LOOK for answers. So, B and I started thinking about it again. We did a whole lot of talking, thinking, thinking, thinking and ultimately, we decided we want to take Sam. We can afford to. (Well. . . with the generous help of grandparents!) So why not? Why not take advantage of this center of experts? The whole theory behind the clinic is to have--in one place-- working collaboratively -- a multi-disciplinarian approach to hypotonia. The geneticist that started the clinic works with a developmental pediatrician, neurologist, neuro-muscular specialist, orthopedist, etc. to make sure each child is evaluated fully and completely and that their treatment course, whether it be PT, OT, or something else -- is tailored to the individual. So, why not go? So our minds are made up. We shall go.
Then, I started the intake process, and suddenly, I feel scared. Like my tummy hurts just thinking about it.
Things are going well. Really well. Sam's doing fabulously. We skyped with her nana and papa the other night (who hadn't seen her in a few months) and they were literally BLOWN away by the things she was doing. And I can feel SO fabulous about that one minute, and seconds later, b/c I have to order medical records, or schedule an appointment, or whatever, suddenly, I'm all tummy ache and worry. Maybe that's just who I am.
The thing about taking Sam to the clinic is that (well there's two things) first, things ARE going well. We aren't taking her b/c things suddenly are bad or we are more scared or anything. We are just taking her b/c we can't really justify NOT taking advantage of this exceptional center (or what we hope turns out to be an exceptional center!). And second, well, we aren't taking her because we NEED a label, which I know is the reason for some (they WANT some official diagnosis other than hypotonia). I don't want a label just to label, and B and I are simply not interested in chasing genetic answers if it won't change the course of treatment. I think more than anything, we just want to know that we've left NO stone unturned. We don't care about (and quite frankly, won't put Sam through) tests that the results of which wouldn't change or add to Sam's treatment. But, we have to feel like we've exhausted everything else to know that we are doing the best jobs possible as her parents.
So, we've started the intake process, and its scary (well, the intake process isn't scary; its my own worry that sets in that is scary!). Can't help it. Even when things are good . . . great even . . . there are moments of worry and panic and fear. Moments I want to RUN from my desk (b/c I'm not getting anything done anyway) and go home and just sit and hug Sammie B. Watch her. Giggle with her. See the progress with my own two eyes, just to remind the crazy me that there IS progress.
- PT issues.
We've been . . . erh . . . frustrated with Sammie B's PT for awhile. She came highly recommended, and she's always been a big part of Sammie B's "Team" BUT at the same time, there are things about her that urk us to no end. She's consistently 10 -15 minutes late for every appointment, yet ends at the normal time. That's cheating Sam out of therapy time (and frankly, robbing the state of funds!). She chats to us through the entire session, while working with Sam, and we wish her focus was less on us and more on Sam. She's also kind of a negative nelly . . . and has this "I'm the only one in the world that knows what I'm doing attitude." Like when we told her Sam went from laying to sitting solo in OT, her first reaction was that she didn't like how the OT was showing Sam how to do it. Hello? TEAM? Part of us wants to give her the benefit of the doubt and realize that she probably thought (or hoped) Sam would be further along in her motor skills now so she does feel discouraged, but that shouldn't show in appointments, right?! (Other PT/OT moms, I really want your insight here!).
Then, B's dad and my mom BOTH got to come out (at separate times) and go to both OT and PT appoinments, and BOTH commented on how impressed they were with the way Sam's OT worked WITH Sam and how the session was clearly ABOUT Sam and how different that was from the PT. I think the fact that we have such a young, excited OT has made the irritating qualities even more apparent. I mean, maybe the OT doesn't have the YEARS of experience that the PT has, but maybe there's something also to be said for enthusiasm over experience.
Part of us felt like we'd be crazy to move on from this PT that has so much experience, came highly recommended, etc., (A friend surmised that reputation may be a few years old, which may be true). Then, we felt like we had to change. NOW, we are at a point where we've decided that we've worked with this person now for over a year, and maybe just maybe we can TALK through these issues (constructively) with her in hopes of moving forward together. I emailed her and we plan to have this talk soon. That too makes my stomach hurt, but I know if I let things keep going as they are, I'm not doing my job in being Sammie B's best advocate. She deserves more from her PT and as it is now, she's being cheated. But . . . not going to be a fun or easy conversation.
So all of these "to-do's," and upcoming appointments/talks/etc. have me all worked up. On a day I have a ton to do at work, but can't seem to focus. Oy. Boo. Hiss. All that jazz.
And when I have these negative nelly moments myself, when the worry and fear overtake my optimism, I feel guitly. Like I'm discounting who Sam is. It's insane, I know. Because, I don't for a SECOND want to change Sam. It's her story. And we've learned more about love from her in her 23 months of life than I learned in the other 30 years of mine. She's magic. PURE magic. But if I could make things easier for her, to make things come more effortlessly to her, I would. In a heartbeat.
I love her so much my heart hurts. And that's why, just sitting at my desk, thinking about doctors' appointments, therapist changes, etc., and HOPING BEYOND HOPE that we are making the right choices for her, opening the right doors, panic sets in, and tears STREAM down my face. Being a parent -- one of the two people making the decisions for someone as magical as little Sammie B -- is a heavy burden. But one I wouldn't trade for the world.
Just a day. A moment. This too shall pass.
- To Hopkins or not to Hopkins?
After Sam was "diagnosed" with hypotonia (low-tone), I immediately hit google. Sometime along the way, I learned about a hypotonia center at John Hopkins in Baltimore. I told B about it and we sort of kept it in the back of our heads as an option for later. Then, recently, someone I connected with on my mom's board wrote about taking her son to the clinic and for the first time feeling like someone -- a doctor -- was going out of his way to proactively LOOK for answers. So, B and I started thinking about it again. We did a whole lot of talking, thinking, thinking, thinking and ultimately, we decided we want to take Sam. We can afford to. (Well. . . with the generous help of grandparents!) So why not? Why not take advantage of this center of experts? The whole theory behind the clinic is to have--in one place-- working collaboratively -- a multi-disciplinarian approach to hypotonia. The geneticist that started the clinic works with a developmental pediatrician, neurologist, neuro-muscular specialist, orthopedist, etc. to make sure each child is evaluated fully and completely and that their treatment course, whether it be PT, OT, or something else -- is tailored to the individual. So, why not go? So our minds are made up. We shall go.
Then, I started the intake process, and suddenly, I feel scared. Like my tummy hurts just thinking about it.
Things are going well. Really well. Sam's doing fabulously. We skyped with her nana and papa the other night (who hadn't seen her in a few months) and they were literally BLOWN away by the things she was doing. And I can feel SO fabulous about that one minute, and seconds later, b/c I have to order medical records, or schedule an appointment, or whatever, suddenly, I'm all tummy ache and worry. Maybe that's just who I am.
The thing about taking Sam to the clinic is that (well there's two things) first, things ARE going well. We aren't taking her b/c things suddenly are bad or we are more scared or anything. We are just taking her b/c we can't really justify NOT taking advantage of this exceptional center (or what we hope turns out to be an exceptional center!). And second, well, we aren't taking her because we NEED a label, which I know is the reason for some (they WANT some official diagnosis other than hypotonia). I don't want a label just to label, and B and I are simply not interested in chasing genetic answers if it won't change the course of treatment. I think more than anything, we just want to know that we've left NO stone unturned. We don't care about (and quite frankly, won't put Sam through) tests that the results of which wouldn't change or add to Sam's treatment. But, we have to feel like we've exhausted everything else to know that we are doing the best jobs possible as her parents.
So, we've started the intake process, and its scary (well, the intake process isn't scary; its my own worry that sets in that is scary!). Can't help it. Even when things are good . . . great even . . . there are moments of worry and panic and fear. Moments I want to RUN from my desk (b/c I'm not getting anything done anyway) and go home and just sit and hug Sammie B. Watch her. Giggle with her. See the progress with my own two eyes, just to remind the crazy me that there IS progress.
- PT issues.
We've been . . . erh . . . frustrated with Sammie B's PT for awhile. She came highly recommended, and she's always been a big part of Sammie B's "Team" BUT at the same time, there are things about her that urk us to no end. She's consistently 10 -15 minutes late for every appointment, yet ends at the normal time. That's cheating Sam out of therapy time (and frankly, robbing the state of funds!). She chats to us through the entire session, while working with Sam, and we wish her focus was less on us and more on Sam. She's also kind of a negative nelly . . . and has this "I'm the only one in the world that knows what I'm doing attitude." Like when we told her Sam went from laying to sitting solo in OT, her first reaction was that she didn't like how the OT was showing Sam how to do it. Hello? TEAM? Part of us wants to give her the benefit of the doubt and realize that she probably thought (or hoped) Sam would be further along in her motor skills now so she does feel discouraged, but that shouldn't show in appointments, right?! (Other PT/OT moms, I really want your insight here!).
Then, B's dad and my mom BOTH got to come out (at separate times) and go to both OT and PT appoinments, and BOTH commented on how impressed they were with the way Sam's OT worked WITH Sam and how the session was clearly ABOUT Sam and how different that was from the PT. I think the fact that we have such a young, excited OT has made the irritating qualities even more apparent. I mean, maybe the OT doesn't have the YEARS of experience that the PT has, but maybe there's something also to be said for enthusiasm over experience.
Part of us felt like we'd be crazy to move on from this PT that has so much experience, came highly recommended, etc., (A friend surmised that reputation may be a few years old, which may be true). Then, we felt like we had to change. NOW, we are at a point where we've decided that we've worked with this person now for over a year, and maybe just maybe we can TALK through these issues (constructively) with her in hopes of moving forward together. I emailed her and we plan to have this talk soon. That too makes my stomach hurt, but I know if I let things keep going as they are, I'm not doing my job in being Sammie B's best advocate. She deserves more from her PT and as it is now, she's being cheated. But . . . not going to be a fun or easy conversation.
So all of these "to-do's," and upcoming appointments/talks/etc. have me all worked up. On a day I have a ton to do at work, but can't seem to focus. Oy. Boo. Hiss. All that jazz.
And when I have these negative nelly moments myself, when the worry and fear overtake my optimism, I feel guitly. Like I'm discounting who Sam is. It's insane, I know. Because, I don't for a SECOND want to change Sam. It's her story. And we've learned more about love from her in her 23 months of life than I learned in the other 30 years of mine. She's magic. PURE magic. But if I could make things easier for her, to make things come more effortlessly to her, I would. In a heartbeat.
I love her so much my heart hurts. And that's why, just sitting at my desk, thinking about doctors' appointments, therapist changes, etc., and HOPING BEYOND HOPE that we are making the right choices for her, opening the right doors, panic sets in, and tears STREAM down my face. Being a parent -- one of the two people making the decisions for someone as magical as little Sammie B -- is a heavy burden. But one I wouldn't trade for the world.
Just a day. A moment. This too shall pass.
Thursday, August 26, 2010
A Love Affair
Sam has fallen in love. Head over heels. Unfortunately, he's green. Cute, but green. And ogre'ish.
I guess its always funny what kids get attached to or what toys they love or hate. She really likes farm animals, so I bought her one of those little people farms, thinking she'd LOVE it. I even kept it in my car for days because I wanted to get it out when I had time to sit and play with it with her for awhile. Didn't want anyone else to have that honor. I was so excited. Guess what?! Her -- not so excited. Kind of luke warm about it actually. And another time, B was at Target and decided he wanted to bring a surprise home for her. He was actually deciding between Elmo and this "Little Abuelito" doll (can't find an online picture to link to, but its a little old man with glasses), and because the latter had glasses, he thought she'd LOVE him. He came running in the door, ecstatic to show her what he'd found. A DOLL. WITH GLASSES. She burst into tears. Scared to death of the Little Abuelito. Abuelito went back to Target (maybe many kids had similar reactions and that's why the little man is not available anymore?!), and we got a tickly Elmo instead.
But this shrek. Wow. She got him when we were at B's cousins' house in Northern Cal on our little vacay earlier this summer. Their kids weren't into him, and Sam fell for him. Hard. So, we got to take him home. Her face lights up when she sees him. And, if you look back at this blog over the last few months, you'll see Mr. Shrek has made many appearances. It's love.
I guess its always funny what kids get attached to or what toys they love or hate. She really likes farm animals, so I bought her one of those little people farms, thinking she'd LOVE it. I even kept it in my car for days because I wanted to get it out when I had time to sit and play with it with her for awhile. Didn't want anyone else to have that honor. I was so excited. Guess what?! Her -- not so excited. Kind of luke warm about it actually. And another time, B was at Target and decided he wanted to bring a surprise home for her. He was actually deciding between Elmo and this "Little Abuelito" doll (can't find an online picture to link to, but its a little old man with glasses), and because the latter had glasses, he thought she'd LOVE him. He came running in the door, ecstatic to show her what he'd found. A DOLL. WITH GLASSES. She burst into tears. Scared to death of the Little Abuelito. Abuelito went back to Target (maybe many kids had similar reactions and that's why the little man is not available anymore?!), and we got a tickly Elmo instead.
But this shrek. Wow. She got him when we were at B's cousins' house in Northern Cal on our little vacay earlier this summer. Their kids weren't into him, and Sam fell for him. Hard. So, we got to take him home. Her face lights up when she sees him. And, if you look back at this blog over the last few months, you'll see Mr. Shrek has made many appearances. It's love.
Sunday, August 22, 2010
A SUPER Fabulous Saturday
I NEVER fly by the seat of my pants. I'm a planning type of girl. Not spontaneous at all. But this weekend, B and I both needed to do a ton of work, so we made a deal -- I got a Super Sammie Day on Saturday while he worked, and he got the same on Sunday while I worked. (I'd hoped to finish in time for us to go to a local outdoor concert, but that didn't happen . . .). I know, how 21st Century parenting of us . . . splitting up the weekend to work (boo). We even made the negotiations via blackberry ;o) Anyway, although we both would have preferred family time, we take what we can get, so each of us made the most of our Sammie days while the other worked.
For my Sammie Saturday, I planned to just stay home and play and work with her all day, but after breakfast, decided to walk to the park to look at boats. I took a blanket and toys, and figured Sammie B and I would do her "work" there. Then, as we were walking around the park, and I was showing her boats (and after she tried to say "boat" -- "bo"), and she was enjoying them so much, I saw the water taxi, and decided we'd jump on. I happened to have enough cash, and I'd never been. I figured if she hated it, we'd hop off at the next stop and walk home. Well, she LOVED it, so we road to all the stops -- we were on for about 45 minutes. She stood the entire time, just looking over. We both had a blast! I also taught her the sign for boat, and she was doing it all night . . . We gave her a toy boat we have at home, and we looked back over at her, and she was just holding it, signing "boat." It was truly a perfect Saturday. Sunday was less perfect (I get super bummed when B and Sammie B are playing while I'm working . . . a life-long problem, I can't STAND to miss a party!), but a good weekend!
It was so fun having a "first" with Sammie on Saturday, and experiencing this short little $1 boat ride through her eyes. I even got a picture of both of us, even though I was make-up-less and messy-haired!!! As silly as it sounds, I talked about it the rest of the day, telling B how nice it was (and how much I surprised myself) by doing something so spontaneous and fun for the little Bean!
We can't wait to go again!
[Oh, and for B's Sammie Sunday, they went swimming . . . I could hear her shrieking with joy from the pool as I sat in our home office and worked . . . adding to my "hate to miss a party" problem but happy for B that he was having such a blast with our Bean.]
Tuesday, August 17, 2010
The Human Brain is INCREDIBLE
When I was driving home last night, I heard something on NPR about a story of a woman who had monocular vision due to strabismus until she was in her late 40s and then re-trained her brain to have binolcuar vision . . . which is sort of counter to most expert's thinking on the brain and vision development (most believe binocular vision has to be developed in childhood or is lost forever). I heard the name of the book, and couldn't wait to tell Brian about it. Then, after dinner, we turned on NPR and the full story was on, which is very random b/c whether I admit it or not, I'm more of a Ryan Seacrest radio girl than an NPR one so the fact that TWICE in one day I happened to be listening to NPR and heard this story is incredible enough ;o) Anyway, more to the point . . .
The interview on NPR was with the author of the book 'Fixing My Gaze: a Scientist's Journey into Seeing in Three Dimensions.' Fascinating! The author had been cross-eyed as a child and had three separate surgeries to straighten her eyes. Then through therapy in her late 40s/early 50s taught herself to see in 3-D. Oh, and while she was doing this she was a professor of neurobiology! We were obviously interested because of the relevance to Sam's eyes but you should listen to the interview (or read the book, which we plan to do) because she does a good job of explaining strabismus and how the brain and body adapt to the condition. Not to mention the fact that it's just plain interesting.
The NPR interview (on Fresh Air) can be accessed from the author's website - www.fixingmygaze.com.
So, it was fascinating, and also a good reminder of how malleable (and incredible) the human brain really is. We are told that Sam's binocular vision is fine (and the doctors credit her early surgery with this) but we know her tracking and depth perception is a little off . . . but again, the doctors tell us those pathways will form in time. This story reminded me that we don't have to be in a rush! Sure, we'd like for Sam vision to be perfecto asap, but really, the brain is incredible, and she'll get there (wherever "there" is!). . . in her own time.
The interview on NPR was with the author of the book 'Fixing My Gaze: a Scientist's Journey into Seeing in Three Dimensions.' Fascinating! The author had been cross-eyed as a child and had three separate surgeries to straighten her eyes. Then through therapy in her late 40s/early 50s taught herself to see in 3-D. Oh, and while she was doing this she was a professor of neurobiology! We were obviously interested because of the relevance to Sam's eyes but you should listen to the interview (or read the book, which we plan to do) because she does a good job of explaining strabismus and how the brain and body adapt to the condition. Not to mention the fact that it's just plain interesting.
The NPR interview (on Fresh Air) can be accessed from the author's website - www.fixingmygaze.com.
So, it was fascinating, and also a good reminder of how malleable (and incredible) the human brain really is. We are told that Sam's binocular vision is fine (and the doctors credit her early surgery with this) but we know her tracking and depth perception is a little off . . . but again, the doctors tell us those pathways will form in time. This story reminded me that we don't have to be in a rush! Sure, we'd like for Sam vision to be perfecto asap, but really, the brain is incredible, and she'll get there (wherever "there" is!). . . in her own time.
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