Sweet Bean:
In 2008 and 2009, we celebrated many of your "firsts" -- your first Thanksgiving, Christmas, New Years, Birthday, etc. And now, the "seconds" have already begun -- we've had your second Thanksgiving and Christmas already and tonight marks the second time that we've rung in a NEW YEAR with you. And, what a year it's been! I think back to last year at New Years, when you were just a tiny little bean in our arms (sleeping soundly through everything):
Mama and Dada were just a mere three months into this parenting journey, just fumbling along as new parents, enjoying EVERY second of it (of course) but still, we had no idea what was in store for us. We were still getting to know our Bean. In many ways, we are still those new parents, fumbling along . . . trying to figure out how to be the very best parents we can be to you, but at the same time, we now KNOW you. We know what your cries mean, we know what makes you laugh, we know you. We aren't just a couple of new parents and their baby . . . we are a family. It's incredible.
As we sat holding you last New Years, we had no idea what 2009 would bring. We didn't know we'd start early intervention services with you, that you'd have eye surgery, or that you'd be our lovely lady in lavender glasses! What a year! While I wish things were easier for you (and for us) I cannot imagine a happier little girl than you! Your giggles have gone from sporadic baby laughs to real little girl giggles, and there is nothing on earth that we love more. You are our favorite thing. In your short 15 months on earth, you've enriched our lives in such deep and meaningful ways. You are our hearts!
So, while I am hopeful that 2010 brings less struggle, I hesitate to say that I hope it also brings more laughter & love (because I'm not even sure that's possible) but I'll say it anyway. We will love you endlessly, and will laugh with you forever my girl! May 2010 bring so many wonderful things to you and to us. You've taken over our hearts (and our bed, but that's for another letter ;o)), shaken our world and turned it upside down. We can't imagine our lives without you.
Tomorrow, we will celebrate the first day of the new year (new decade!) in a traditional southern way -- with black-eyed peas and collard greens and all the things that your southern ancestors insisted bring good luck in the new year . . . I don't always do it, but this year, I'm not taking any chances!
In 2010 and beyond, we can't wait to celebrate the continued "firsts," as well as all of your seconds, thirds, fourths, and so on with you. You just started "dancing" with us in the last few days, and we can't wait to dance through a whole new year, new DECADE, with you! We adore you. Here's to you in 2010 my Bean! May 2010 be the Year of the Bean! The Year of YOU!
Your ever lovin' Mama
*And a note about the pictures . . . let's all rejoice that Sammie B's hair has filled in some . . . and that Mama's not quite so "filled in" with post-babe weight this New Years!
Thursday, December 31, 2009
Thursday, December 24, 2009
Holiday Cheer (finally!)
Despite my earlier blog, I'm finding it hard not to be hopeful and happy tonight, on Christmas Eve. After working a little this morning, we've had a nice, relaxing family day, including dinner out (I decided this year, I'd rather spend all my spare time playing, not cooking so we are eating out tomorrow too!) After dinner, we all put on our matching Cmas jammies (unfortunately, we couldn't find matching ones for Sam this year, but we made it work!) and opened ONE present. We had a nice evening!
We couldn't get a good picture of Sammie B sitting under the tree because she was way too distracted by the presents:
Her super cute jammies ("What Santa Doesn't Bring Me Grandma Will" which is perfect because my parents arrive in three days for a belated Cmas celebration):
Brian picked one gift to be opened tonight (I wrapped them so he picks!)
B and Bean sat and stared at the new toy while I ran to the store and got batteries (we have TONS of batteries here, but no Ds!):
And finally, our family picture:
And now, we flash back to last year:
And because I love these comparisons, here's last year just before we went to see Santa and this year before seeing Santa:
She was just a PEA last year, and now she's a LITTLE GIRL. These pictures blow me away. What a year!
Looking at these pictures really reminds me that this year has been filled with so much joy and love. So tonight, I hang up my worries and fears for the holiday, and enjoy some quality time with my wonderful little family. So, here's to wishing and hoping, and above all, loving. Merry Christmas!
We couldn't get a good picture of Sammie B sitting under the tree because she was way too distracted by the presents:
Her super cute jammies ("What Santa Doesn't Bring Me Grandma Will" which is perfect because my parents arrive in three days for a belated Cmas celebration):
Brian picked one gift to be opened tonight (I wrapped them so he picks!)
B and Bean sat and stared at the new toy while I ran to the store and got batteries (we have TONS of batteries here, but no Ds!):
And finally, our family picture:
And now, we flash back to last year:
And because I love these comparisons, here's last year just before we went to see Santa and this year before seeing Santa:
She was just a PEA last year, and now she's a LITTLE GIRL. These pictures blow me away. What a year!
Looking at these pictures really reminds me that this year has been filled with so much joy and love. So tonight, I hang up my worries and fears for the holiday, and enjoy some quality time with my wonderful little family. So, here's to wishing and hoping, and above all, loving. Merry Christmas!
Labels and Wishes
Christmas cheer will come tomorrow, but for today, I have too much to spill. First, I'm working on Cmas Eve, and second, I just have a LOT on my mind.
I've been struggling a ton with the various labels attached to my Bean . . . hypotonic, developmentally delayed, not "typically" developing, special needs. Really? Is she special needs? That's the one I struggle with the most . . . I mean, yes, she has special needs right now - she gets PT twice a week and OT once, but I don't think of her as a "special needs" child. She's just my Bean. My Sammie B. Sweet Sweet Samantha.
When Sam first got approved for regional center services, and we started all of these therapies, I felt like immediately B embraced the 'special needs' label and ran with it. He was thinking of up ideas for a non-profit (one we still hope to form) to help other special needs kids get therapy equipment and resources. Everytime he brought it up, inside, my stomach did a flip. I hated that it was so easy for him to just accept it, hated myself for not being able to, and hated the words he used "special needs." I remember him telling me he met with a politician from our city (as part of a volunteer project he does) and that they were talking about the lack of playgrounds for special needs kids, and he said "I told her that we have a special needs child . . . " and inside, I thought "no we don't" and my gut fluttered again.
But lately, I understand more and more . . . he needed those things to throw his energy into because it was easier to dream and plan for some not-yet-formed non-profit or for playground renovation than to worry about what the future would hold for the little Bean that we love and adore. But lately, as we get further and further into this process with Sammie B, he's struggling more and more . . . His struggle of course is not blog material - it is his story to tell, not mine. [Though I have to say that even B's "struggle" is somehow more sane than mine. He doesn't allow himself to fall into despair the way I do.] Anyway, by seeing him struggle, I feel like I'm backtracking. That suddenly, the fear and the worry that I'd managed to (sort of) overcome is trickling back in, in more powerful ways than ever before. And again, I find myself consumed with questions and worry about what is to come for my sweet sweet Bean.
The doctors continue to tell us that "she'll be fine." "Lots of kids with low tone go through this and are fine, even ones that don't receive the therapy she's receiving." But as the milestones fall further and further behind us, the less comforting these words are. We are "need to know" not "wait and see" people and this is harder than anything EVER. So, we decided we will just be more adamant that the doctors look for answers. They've always said there's no reason for more tests b/c its just "low tone," but I think we now know that we NEED them to try to rule out other things that could be causing the low tone. Then, once we've exhausted those tests living with the "its just low tone" would be easier. Living in limbo with wonder is hard. So, we made another neurologist appointment in the next month, even though the neurologist said she didn't need to see us again until March. This appointment is for us. WE NEED IT.
We have also known for awhile that low tone kids often have speech issues. (Tone affects oral muscles as well). We'd hoped we'd escape that, but at 14 months (adjusted age) and with only two words (though tons of babbling and gesturing), we are beginning to realize we likely won't. So, that's on the list to talk to our doctors about. So, suddenly we find ourselves faced with the possibility of adding ANOTHER weekly appointment. Which stinks.
One thing I've said (and B has said too) over and over is that this is Sam's story. We wouldn't change it for the world. We wouldn't change her for the world. She's our Bean. But lately, B and I both are starting to realize that its OKAY to admit that if we could (which we can't) we'd take away her struggle. That doesn't discount the incredible little person she is or how much we adore her. I hope that someday I DO look back at all of this and realize that it was just a struggle that made her (and us) who we are, but for now, struggling sucks. (and fuck whoever said there's growth through struggle. . . right now, we are just sort of tired of struggling!). Admitting that we'd take away her struggle if we could doesn't mean we want to change her. Of course we don't.
I've actually found some other blogs of mothers of hypotonic children, and that helps A TON. One mother said that she watched as her hypotonic child learned to crawl and realized that unlike her typical children (who found the crawling position one day, rocked for a few days, then took off), it happened in many many more small steps for her hypotonic child, and that she had to learn to appreciate each little step as a milestone. We are trying to. Really. And, we do appreciate the progress . . . more than words can express (and there IS progress, however slow it feels at times) but somedays we just wish it were easier. For her, and for us. I want with every fiber of my being for her to be able to explore her world through movement. For her to see something across the room (which she would now sort of gesture toward to indicate she wants) and be able to just take off and get it. I can just imagine the little gleeful smile that would spread across her face as she went for it.
I've resorted to begging my "higher power" (which many who know me know I'm generally ambivalent about) for SOMETHING. Give us something to make this easier.
And, while I'm not much of a praying girl, those who know me also know, I am a wishing girl. An eyelash? Yay - a wish! 11:11? A wish! TWO RED CARS IN A ROW (I made this one up)? That's a wish too! As a wishing girl, I (of course) WON'T dislcose my wishes, but I'll just say that lately, I jump at every chance to make a wish, and to make a wish for my Bean. (Oh, and I'm pretty sure that wishing on her eyelashes is even better luck!). But the wishes aren't coming true as fast as I would like, and with that comes more struggle, more panic, more fear.
I know that the labels don't matter. She's just our Samantha, and she brings more depth and meaning and happiness to our lives than we ever knew possible. She may not have found all of her words yet, but her "mama" is the sweetest sound ever, and her personality POURS out of her. Things may not come easy to her (at least not now, maybe later) but that will make them oh so much sweeter when they come.
Sammie B, I adore you. My every wish is yours.
I've been struggling a ton with the various labels attached to my Bean . . . hypotonic, developmentally delayed, not "typically" developing, special needs. Really? Is she special needs? That's the one I struggle with the most . . . I mean, yes, she has special needs right now - she gets PT twice a week and OT once, but I don't think of her as a "special needs" child. She's just my Bean. My Sammie B. Sweet Sweet Samantha.
When Sam first got approved for regional center services, and we started all of these therapies, I felt like immediately B embraced the 'special needs' label and ran with it. He was thinking of up ideas for a non-profit (one we still hope to form) to help other special needs kids get therapy equipment and resources. Everytime he brought it up, inside, my stomach did a flip. I hated that it was so easy for him to just accept it, hated myself for not being able to, and hated the words he used "special needs." I remember him telling me he met with a politician from our city (as part of a volunteer project he does) and that they were talking about the lack of playgrounds for special needs kids, and he said "I told her that we have a special needs child . . . " and inside, I thought "no we don't" and my gut fluttered again.
But lately, I understand more and more . . . he needed those things to throw his energy into because it was easier to dream and plan for some not-yet-formed non-profit or for playground renovation than to worry about what the future would hold for the little Bean that we love and adore. But lately, as we get further and further into this process with Sammie B, he's struggling more and more . . . His struggle of course is not blog material - it is his story to tell, not mine. [Though I have to say that even B's "struggle" is somehow more sane than mine. He doesn't allow himself to fall into despair the way I do.] Anyway, by seeing him struggle, I feel like I'm backtracking. That suddenly, the fear and the worry that I'd managed to (sort of) overcome is trickling back in, in more powerful ways than ever before. And again, I find myself consumed with questions and worry about what is to come for my sweet sweet Bean.
The doctors continue to tell us that "she'll be fine." "Lots of kids with low tone go through this and are fine, even ones that don't receive the therapy she's receiving." But as the milestones fall further and further behind us, the less comforting these words are. We are "need to know" not "wait and see" people and this is harder than anything EVER. So, we decided we will just be more adamant that the doctors look for answers. They've always said there's no reason for more tests b/c its just "low tone," but I think we now know that we NEED them to try to rule out other things that could be causing the low tone. Then, once we've exhausted those tests living with the "its just low tone" would be easier. Living in limbo with wonder is hard. So, we made another neurologist appointment in the next month, even though the neurologist said she didn't need to see us again until March. This appointment is for us. WE NEED IT.
We have also known for awhile that low tone kids often have speech issues. (Tone affects oral muscles as well). We'd hoped we'd escape that, but at 14 months (adjusted age) and with only two words (though tons of babbling and gesturing), we are beginning to realize we likely won't. So, that's on the list to talk to our doctors about. So, suddenly we find ourselves faced with the possibility of adding ANOTHER weekly appointment. Which stinks.
One thing I've said (and B has said too) over and over is that this is Sam's story. We wouldn't change it for the world. We wouldn't change her for the world. She's our Bean. But lately, B and I both are starting to realize that its OKAY to admit that if we could (which we can't) we'd take away her struggle. That doesn't discount the incredible little person she is or how much we adore her. I hope that someday I DO look back at all of this and realize that it was just a struggle that made her (and us) who we are, but for now, struggling sucks. (and fuck whoever said there's growth through struggle. . . right now, we are just sort of tired of struggling!). Admitting that we'd take away her struggle if we could doesn't mean we want to change her. Of course we don't.
I've actually found some other blogs of mothers of hypotonic children, and that helps A TON. One mother said that she watched as her hypotonic child learned to crawl and realized that unlike her typical children (who found the crawling position one day, rocked for a few days, then took off), it happened in many many more small steps for her hypotonic child, and that she had to learn to appreciate each little step as a milestone. We are trying to. Really. And, we do appreciate the progress . . . more than words can express (and there IS progress, however slow it feels at times) but somedays we just wish it were easier. For her, and for us. I want with every fiber of my being for her to be able to explore her world through movement. For her to see something across the room (which she would now sort of gesture toward to indicate she wants) and be able to just take off and get it. I can just imagine the little gleeful smile that would spread across her face as she went for it.
I've resorted to begging my "higher power" (which many who know me know I'm generally ambivalent about) for SOMETHING. Give us something to make this easier.
And, while I'm not much of a praying girl, those who know me also know, I am a wishing girl. An eyelash? Yay - a wish! 11:11? A wish! TWO RED CARS IN A ROW (I made this one up)? That's a wish too! As a wishing girl, I (of course) WON'T dislcose my wishes, but I'll just say that lately, I jump at every chance to make a wish, and to make a wish for my Bean. (Oh, and I'm pretty sure that wishing on her eyelashes is even better luck!). But the wishes aren't coming true as fast as I would like, and with that comes more struggle, more panic, more fear.
I know that the labels don't matter. She's just our Samantha, and she brings more depth and meaning and happiness to our lives than we ever knew possible. She may not have found all of her words yet, but her "mama" is the sweetest sound ever, and her personality POURS out of her. Things may not come easy to her (at least not now, maybe later) but that will make them oh so much sweeter when they come.
Sammie B, I adore you. My every wish is yours.
Friday, December 18, 2009
And All Are Well Again
Despite a crummy "when it rains it pours" kind of week (literally AND figuratively) things are returning to normal at our house. Sammie B was a little under the weather from Saturday until Tuesday. Her fever never got very high (99.5) but she just wasn't herself. She was a bit tired, a little weaker than her norm, and a lot whiny. And then Tuesday, in OT, she just had a rough time. She cried and whined through ALL of it. I think its probably b/c our OT scratched Sam's head with her watch at the beginning of the session, so things just got off on the wrong foot between the two of them, BUT, I called our doctor. She wasn't concerned, and said to give it 24 hours to see if she was back to normal. I waited and worried (per my usual) and decided to call Wednesday morning and get an appointment because I'd feel better if her pediatrician saw her. I had to bail on a work conference call but we went to the doctor Wednesday (after what was surprisingly a great PT session at our house that morning). . . and the doctor said Sammie B was a-okay. Probably just had a little bug OR maybe got a little symptomatic from her swine flu shot last week AND she's teething like mad. So, that explains the tired, the whiny, the weak, and the waking up during the night.
In the midst of the sickies though, we had LOTS of great cuddly moments, since our Bean was so so tired, she needed lots of snuggles. We loved them!
Wednesday night, I was determined that this little Bean was going to get TONS of sleep and sleep off her ailments. . . so I gave her teething tablets, and B took her to bed with him while I stayed up and worked. When I got to bed, they were sleeping nose to nose with her hand on his cheek. Melted.My.Heart. I tried to snap a picture, but this is what I got (an irritated dada and no-good-but-funny-nonetheless picture!):
Good stuff. As I climbed into bed, I took off my glasses and laid them on the night stand next to her tiny purple ones, and climbed into bed with B and Bean. And my heart smiled. Big.
And, IT WORKED. Sammie B slept 13 hours straight and woke up a NEW BEAN . . . back to her old self. She woke up smiling and happy and had a great day with our nanny. They also went to their music class together, and this was the first one where Sammie B joined in on the clapping. Pretty stinking cute! (Wish I'd been there!).
On the work front, things are still a bit nuts. Which means, I haven't put up a Christmas tree YET (will I?). . . sigh. I'm also having a love-hate relationship with the "flexibility" offered by modern technology. We can now forward our office phones to our cells; we have blackberries; etc. So, the up shot of this is that I can take my Bean to the doctor on a Wednesday morning and still manage a filing by berry, but the DOWNSIDE is that I'm feeling lately like I'm never "off." That even while sitting at the doctor with my sick little Bean, I don't have 100% of me to give to her (and she deserves that) because this part of me (say maybe 5%) is "at work" -- checking the blackberry, taking calls, etc. It made me grumpy and sad. BUT, at the same time, I know I'm lucky to have the type of job where I can do this . . . I didn't have to call in "sick" or lose pay to take her to the doctor, I just did it. AND, as B reminded me, I COULD have let our nanny take her and I could have gone to work . . . but that's NOT who I am. It's not the mom I am. If she's sick, I WANT to be the one at the doctor with her, and I'll do anything to be there. Maybe eventually, I'll learn to let go a little, but to be honest, I'm just not sure that's who I am.
In the midst of the sickies though, we had LOTS of great cuddly moments, since our Bean was so so tired, she needed lots of snuggles. We loved them!
Wednesday night, I was determined that this little Bean was going to get TONS of sleep and sleep off her ailments. . . so I gave her teething tablets, and B took her to bed with him while I stayed up and worked. When I got to bed, they were sleeping nose to nose with her hand on his cheek. Melted.My.Heart. I tried to snap a picture, but this is what I got (an irritated dada and no-good-but-funny-nonetheless picture!):
Good stuff. As I climbed into bed, I took off my glasses and laid them on the night stand next to her tiny purple ones, and climbed into bed with B and Bean. And my heart smiled. Big.
And, IT WORKED. Sammie B slept 13 hours straight and woke up a NEW BEAN . . . back to her old self. She woke up smiling and happy and had a great day with our nanny. They also went to their music class together, and this was the first one where Sammie B joined in on the clapping. Pretty stinking cute! (Wish I'd been there!).
On the work front, things are still a bit nuts. Which means, I haven't put up a Christmas tree YET (will I?). . . sigh. I'm also having a love-hate relationship with the "flexibility" offered by modern technology. We can now forward our office phones to our cells; we have blackberries; etc. So, the up shot of this is that I can take my Bean to the doctor on a Wednesday morning and still manage a filing by berry, but the DOWNSIDE is that I'm feeling lately like I'm never "off." That even while sitting at the doctor with my sick little Bean, I don't have 100% of me to give to her (and she deserves that) because this part of me (say maybe 5%) is "at work" -- checking the blackberry, taking calls, etc. It made me grumpy and sad. BUT, at the same time, I know I'm lucky to have the type of job where I can do this . . . I didn't have to call in "sick" or lose pay to take her to the doctor, I just did it. AND, as B reminded me, I COULD have let our nanny take her and I could have gone to work . . . but that's NOT who I am. It's not the mom I am. If she's sick, I WANT to be the one at the doctor with her, and I'll do anything to be there. Maybe eventually, I'll learn to let go a little, but to be honest, I'm just not sure that's who I am.
Saturday, December 12, 2009
Crazy Comes & Crazy Goes
Just as the wave of panic and worry came, it went. I don't know what happened. I just got all worried and panicky about Sam's "plateau" and allowed myself to lapse into "google-panic" and felt completely crazed for a little day or two. But, the wave went back out to sea, so to speak, and I'm feeling so much better. "It" is what "it" is whatever "it" is . . . we are not on the precise path we envisioned, but we are on OUR path, and we'll make it. All THREE of us.
Sam's done better in PT this week . . . she's tolerating the quadruped (or crawling) position REALLY well. I remember now that this is exactly what sitting was like -- she hated it. But over time, she'd tolerate it for a few seconds, then seconds became minutes, and now she just sits. She sits. I snuck away from work to attend her Friday afternoon session, which I don't usually do, and was so glad I did . . . it was a GREAT session and we had a world record -- her longest time EVER in quadruped independently (three times through our "Sammie B Rocks" song we sing to her during PT). She's also now rolling on command, which is sort of funny. Poor kid has heard, "want to roll?" so much that she now just does it ;o) She does the same thing for "cobra" and our PT loves it. It indicates incredible things about Sammie B's receptive language skills/cognition, and makes us giggle too ;o)
I've been getting lots and lots of "mamas" lately -- and my heart melts with each one. Sammie has the sweetest, softest little voice! After our nap today, I woke up with her next to me, and she just popped her little head up, looked at me and said in the softest little voice, "mama." That's pretty much the best thing ever! And B is getting "dadas" too, which makes him the happiest guy on earth. We laugh because she says "mama" in this sweet sincere voice, but "dada" is always in a more sing-songy excited little voice. Cuteness.
I found that there's a hypotonia clinic at John Hopkins, and I read a lot on their site (occasionally, google-panic can turn up something positive). Anyway, EVERYTHING on their site is completely consistent with what our neurologist and our OT and PT have told us, which is all encouraging. We just have to be patient, and strong. Easier said than done, but we will do it. I think B and I were both also just glad to learn of such a clinic . . . we feel like IF we reach a point where we feel like our own doctors aren't being aggressive or proactive enough, there's this other option -- we'd figure out a way to get an appointment with the clinic, travel there, whatever. Whatever it takes! That's certainly not anything we are considering now (we love our doctors and trust them implicitly), and we of course hope we never need that option, but its nice to know that there are these "experts" out there.
I mean, really, for this little girl . . . anything!
Mom'ing aside, its been an absolutely INSANE week, life-wise. I'm totally exhausted, so I'll do this part in bullet-points:
- Tons of rain --> huge leaking roof. Got it fixed (temporarily) and after the rain stops, the roofers will come do a permanent fix. We also have contractors coming to do the internal repairs. It's not pretty, and these are the times that being a homeowner sucks.
- Trip out-of-state to hearing was canceled, and at first I was relieved, but the reason I had to stay back is that we got served with yet another stupid expedited motion, and I had to write the reply. So, I ended up working MORE than if I'd gone out of town, but with the distractions of family that I wouldn't have had traveling. It was an EXHAUSTING week with several long, long days and two ridiculously late nights.
- Christmas is coming and while I've done all my shopping for Sammie B (I did it all online), we haven't put our tree up (and now, we likely won't this week b/c we will have construction going on in our living room where we'd normally put it) and I still need to shop for other people. We also need to fit a picture with Santa in (which by the way, because Sam has quite the stranger-anxiety as of late, we are pretty sure this picture will be of a SCREAMING Bean and the jolly red guy, but we have to have it).
- My parents are coming b/t Cmas and New Years, and I'm so excited. It has been too long, and I need some mama-time. I've been all over the place emotionally with Sammie B lately, and I know spending some time with my mom will be comforting and wonderful for my soul. Funny how after becoming a mom, I value my own mom more than ever.
-I'm tired. So tired. And tomorrow is Sunday but I'm going to have to work because I have two huge deadlines Monday. Just hoping hoping hoping I get to NOT work on Tuesday. Unfortunately, it will likely be spent taking everything out of my closet so that the ceiling can be repaired. (All of the internal damage is in my closet upstairs, and right below it in the living room downstairs). Boo. I texted B today (after the fourth leak started) with "being an adult sucks."
- This MIGHT be the worst blog entry ever written, but I must.get.sleep. I stayed up until 2:30 am writing a brief, and B woke me up at 6:30 am to tell me there was yet another leak, and I immediately got up and on the phone with the emergency roof people b/c he had to go run. I DID get a TWO hour nap snuggling with Bean this afternoon (pure fabulousness), but I'm still totally wiped out.
So, I'll end with a few pictures to make the awfulness of this entry seem a little less awful:
Sam's done better in PT this week . . . she's tolerating the quadruped (or crawling) position REALLY well. I remember now that this is exactly what sitting was like -- she hated it. But over time, she'd tolerate it for a few seconds, then seconds became minutes, and now she just sits. She sits. I snuck away from work to attend her Friday afternoon session, which I don't usually do, and was so glad I did . . . it was a GREAT session and we had a world record -- her longest time EVER in quadruped independently (three times through our "Sammie B Rocks" song we sing to her during PT). She's also now rolling on command, which is sort of funny. Poor kid has heard, "want to roll?" so much that she now just does it ;o) She does the same thing for "cobra" and our PT loves it. It indicates incredible things about Sammie B's receptive language skills/cognition, and makes us giggle too ;o)
I've been getting lots and lots of "mamas" lately -- and my heart melts with each one. Sammie has the sweetest, softest little voice! After our nap today, I woke up with her next to me, and she just popped her little head up, looked at me and said in the softest little voice, "mama." That's pretty much the best thing ever! And B is getting "dadas" too, which makes him the happiest guy on earth. We laugh because she says "mama" in this sweet sincere voice, but "dada" is always in a more sing-songy excited little voice. Cuteness.
I found that there's a hypotonia clinic at John Hopkins, and I read a lot on their site (occasionally, google-panic can turn up something positive). Anyway, EVERYTHING on their site is completely consistent with what our neurologist and our OT and PT have told us, which is all encouraging. We just have to be patient, and strong. Easier said than done, but we will do it. I think B and I were both also just glad to learn of such a clinic . . . we feel like IF we reach a point where we feel like our own doctors aren't being aggressive or proactive enough, there's this other option -- we'd figure out a way to get an appointment with the clinic, travel there, whatever. Whatever it takes! That's certainly not anything we are considering now (we love our doctors and trust them implicitly), and we of course hope we never need that option, but its nice to know that there are these "experts" out there.
I mean, really, for this little girl . . . anything!
Mom'ing aside, its been an absolutely INSANE week, life-wise. I'm totally exhausted, so I'll do this part in bullet-points:
- Tons of rain --> huge leaking roof. Got it fixed (temporarily) and after the rain stops, the roofers will come do a permanent fix. We also have contractors coming to do the internal repairs. It's not pretty, and these are the times that being a homeowner sucks.
- Trip out-of-state to hearing was canceled, and at first I was relieved, but the reason I had to stay back is that we got served with yet another stupid expedited motion, and I had to write the reply. So, I ended up working MORE than if I'd gone out of town, but with the distractions of family that I wouldn't have had traveling. It was an EXHAUSTING week with several long, long days and two ridiculously late nights.
- Christmas is coming and while I've done all my shopping for Sammie B (I did it all online), we haven't put our tree up (and now, we likely won't this week b/c we will have construction going on in our living room where we'd normally put it) and I still need to shop for other people. We also need to fit a picture with Santa in (which by the way, because Sam has quite the stranger-anxiety as of late, we are pretty sure this picture will be of a SCREAMING Bean and the jolly red guy, but we have to have it).
- My parents are coming b/t Cmas and New Years, and I'm so excited. It has been too long, and I need some mama-time. I've been all over the place emotionally with Sammie B lately, and I know spending some time with my mom will be comforting and wonderful for my soul. Funny how after becoming a mom, I value my own mom more than ever.
-I'm tired. So tired. And tomorrow is Sunday but I'm going to have to work because I have two huge deadlines Monday. Just hoping hoping hoping I get to NOT work on Tuesday. Unfortunately, it will likely be spent taking everything out of my closet so that the ceiling can be repaired. (All of the internal damage is in my closet upstairs, and right below it in the living room downstairs). Boo. I texted B today (after the fourth leak started) with "being an adult sucks."
- This MIGHT be the worst blog entry ever written, but I must.get.sleep. I stayed up until 2:30 am writing a brief, and B woke me up at 6:30 am to tell me there was yet another leak, and I immediately got up and on the phone with the emergency roof people b/c he had to go run. I DID get a TWO hour nap snuggling with Bean this afternoon (pure fabulousness), but I'm still totally wiped out.
So, I'll end with a few pictures to make the awfulness of this entry seem a little less awful:
Saturday, December 5, 2009
Waves
Sometimes it seems like everything in my life comes at me in waves . . . waves of satisfaction, waves of dissatisfaction, waves of working way too much, waves of working much less, waves of feeling like I'm doing everything right, waves of worrying that I'm not. I'm in the midst of a wave of worry. I knew it would come . . . When we had the surge of motor development for Sammie B a month or so ago, with the rolling, cobra, etc., I knew that child development happens in peaks and plateaus, and since we'd hit a peak, I knew what was coming. I thought by expecting it, I could prepare myself. (Someday I might actually learn that my control freak, prepare myself, defense mechanism ways never ACTUALLY "prepare" me; when life throws something sucky at you, it doesn't matter if you saw it coming . . . IT STILL SUCKS).
Anyway, per my usual, I thought that if I prepared myself for the plateau, that I wouldn't allow it to worry me. But, no such luck. Maybe it was the bad experience at the mommy & me group that threw me into this state of worry again. I don't know. I hate it.
When we realized Sammie B was motor-delayed, I sought out SO much information. We found fabulous doctors, we found fabulous therapists, and I learned as much about "low-tone" kids as I could. I tried to throw all my expectations out the window, but sometimes I discover that I just rewrote my expectations, subconsciously, based on what I was learning. So, I knew she wouldn't be walking at 14 months, but I figured "okay, so she'll be a late walker, we can deal, she'll probably walk by 2." I didn't tell anyone, but I guess I'd written some stupid imaginary time line for her in my head -- I figured she'd crawl by 15 months, walk by 2. She'll be 15 months (actual, not adjusted) on Christmas Eve, and as that date gets closer, I feel a bit discouraged. We don't seem to be that close to crawling. I hate myself for having these expectations, and for feeling let down that we aren't meeting them. It is destructive to me, and not fair to Sammie B. She's on HER TIME LINE, and I do know that. But I can't help it. At the end of the day, I KNOW it doesn't matter when she does these things, but sometimes, the waves of worry come at me and I can't stop them.
We actually are starting to think Sammie B will just not be a crawler. She HATES that position (though she's tolerating it better these days) and her shoulder girdle is where her tone is the weakest. So, she may go straight to walking. So be it. But then, I find myself wondering, in spite of myself, WHEN that will happen, and writing those damn time lines in my head. And then rewriting them. It is a terribly vicious and destructive cycle. I told B tonight that maybe I needed to do something symbolic -- write "time lines, expectations, etc." on a piece of paper and rip it into tiny pieces -- to symbolize purging those thoughts from my life, but easier said than done. The Buddhists may have it right . . . desire just may be at the root of suffering.
B and I talked a lot tonight about how I'm feeling, which was good. I think sometimes, we are afraid to tell the other when we have these moments of fear and worry, because we don't want to drag the other one into it if the other is in a better place. That's not good for either of us, and we know it. Tonight, he reminded me of all the things Sammie B is doing that once felt impossible. God, I remember the day we left our first evaluation with the PT from the Regional Center. . . she couldn't sit unassisted, even in a tripod for more than a second or two. Slowly, those seconds turned into minutes, and now . . . she can sit with NO hands. Things like holding herself up in cobra used to be IMPOSSIBLE and now, not only can she do it, she enjoys it, and smiles from ear to ear when she does it.
Our nanny told us that Sammie B did fabulous this week tolerating the quadriped (crawling) position, and she did great in PT with it too. But then today, she would NOT let me put her in it, and I felt so defeated. I HATE those moments of defeat. I HATE that I let myself feel defeated, and I get so angry at myself for looking at my beautiful little Bean, smiling her brilliant smile (well, not so much during the quadriped attempts, but otherwise, smiling) and feeling "defeat." It is an ugly word. I don't like feeling it, and I don't like admitting I felt it.
I wish I knew more moms going through the experience we are going through. Because it is HARD. I'm sure some of the worry and questioning and panic is normal for any mother. I'm sure some of my feelings are unique to me and my personality (which makes me feel like, "okay, I've worked hard for this, why can't I MAKE it happen." . . . that what I struggle with sometime, I feel like we work little Miss Sammie B so hard with all the PT/OT and exercising, and I just WANT to make things happen FOR HER and it stinks that I cannot.). Its a shame the mommy & me group flopped. I thought that would be such a wonderful support system for me. My only real daily connection to moms like me now is that I have found many many great blogs about other kids in various types of early intervention therapies, and I am finding great comfort in them. It is almost like my own little support group, only I guess it is a little one-sided! I have met a few moms whose kids are also in PT, and those are relationships that I value. . . but life gets busy, and sometimes its hard to find time to connect.
I'm trying to just think of the worry as a "wave" like other things in life, and know that this too shall pass. It will.
Anyway, per my usual, I thought that if I prepared myself for the plateau, that I wouldn't allow it to worry me. But, no such luck. Maybe it was the bad experience at the mommy & me group that threw me into this state of worry again. I don't know. I hate it.
When we realized Sammie B was motor-delayed, I sought out SO much information. We found fabulous doctors, we found fabulous therapists, and I learned as much about "low-tone" kids as I could. I tried to throw all my expectations out the window, but sometimes I discover that I just rewrote my expectations, subconsciously, based on what I was learning. So, I knew she wouldn't be walking at 14 months, but I figured "okay, so she'll be a late walker, we can deal, she'll probably walk by 2." I didn't tell anyone, but I guess I'd written some stupid imaginary time line for her in my head -- I figured she'd crawl by 15 months, walk by 2. She'll be 15 months (actual, not adjusted) on Christmas Eve, and as that date gets closer, I feel a bit discouraged. We don't seem to be that close to crawling. I hate myself for having these expectations, and for feeling let down that we aren't meeting them. It is destructive to me, and not fair to Sammie B. She's on HER TIME LINE, and I do know that. But I can't help it. At the end of the day, I KNOW it doesn't matter when she does these things, but sometimes, the waves of worry come at me and I can't stop them.
We actually are starting to think Sammie B will just not be a crawler. She HATES that position (though she's tolerating it better these days) and her shoulder girdle is where her tone is the weakest. So, she may go straight to walking. So be it. But then, I find myself wondering, in spite of myself, WHEN that will happen, and writing those damn time lines in my head. And then rewriting them. It is a terribly vicious and destructive cycle. I told B tonight that maybe I needed to do something symbolic -- write "time lines, expectations, etc." on a piece of paper and rip it into tiny pieces -- to symbolize purging those thoughts from my life, but easier said than done. The Buddhists may have it right . . . desire just may be at the root of suffering.
B and I talked a lot tonight about how I'm feeling, which was good. I think sometimes, we are afraid to tell the other when we have these moments of fear and worry, because we don't want to drag the other one into it if the other is in a better place. That's not good for either of us, and we know it. Tonight, he reminded me of all the things Sammie B is doing that once felt impossible. God, I remember the day we left our first evaluation with the PT from the Regional Center. . . she couldn't sit unassisted, even in a tripod for more than a second or two. Slowly, those seconds turned into minutes, and now . . . she can sit with NO hands. Things like holding herself up in cobra used to be IMPOSSIBLE and now, not only can she do it, she enjoys it, and smiles from ear to ear when she does it.
Our nanny told us that Sammie B did fabulous this week tolerating the quadriped (crawling) position, and she did great in PT with it too. But then today, she would NOT let me put her in it, and I felt so defeated. I HATE those moments of defeat. I HATE that I let myself feel defeated, and I get so angry at myself for looking at my beautiful little Bean, smiling her brilliant smile (well, not so much during the quadriped attempts, but otherwise, smiling) and feeling "defeat." It is an ugly word. I don't like feeling it, and I don't like admitting I felt it.
I wish I knew more moms going through the experience we are going through. Because it is HARD. I'm sure some of the worry and questioning and panic is normal for any mother. I'm sure some of my feelings are unique to me and my personality (which makes me feel like, "okay, I've worked hard for this, why can't I MAKE it happen." . . . that what I struggle with sometime, I feel like we work little Miss Sammie B so hard with all the PT/OT and exercising, and I just WANT to make things happen FOR HER and it stinks that I cannot.). Its a shame the mommy & me group flopped. I thought that would be such a wonderful support system for me. My only real daily connection to moms like me now is that I have found many many great blogs about other kids in various types of early intervention therapies, and I am finding great comfort in them. It is almost like my own little support group, only I guess it is a little one-sided! I have met a few moms whose kids are also in PT, and those are relationships that I value. . . but life gets busy, and sometimes its hard to find time to connect.
I'm trying to just think of the worry as a "wave" like other things in life, and know that this too shall pass. It will.
Wednesday, December 2, 2009
One BIG Love
We've expanded our bedtime song repertoire. I don't always sing to Sammie at night when I rock her, only when she needs help relaxing. But when that happens, I sing "Itsy Bitsy Spider" (mostly because it was literally the only kid song I knew all the right words to before she was born). When try to joke or change up words, she whines. One night when I was singing it to her, and changed the words, she whined and B said, "don't change it. those words comfort her." Realizing that made me FEEL like such a mommy (in a most fabulous way).
Anyway, I've thrown a new song into the mix, and she likes it. We play these lullaby rendition cds for her each night for bedtime. (http://rockabyebabymusic.com/). Anyway, my favorite is the Bob Marley rendition. And now, I've added my own words to the instrumental version of "One Love."
One Love
Mom, Dad and Sammie have one big love.
That's it . . . those are all the words, but I like them. And so does she. Sweet girl.
(Have I mentioned I can't carry a tune? Sweet Sammie will someday be saying "MOM STOP SINGING" but for now, she likes it, and I like that.)
Anyway, I've thrown a new song into the mix, and she likes it. We play these lullaby rendition cds for her each night for bedtime. (http://rockabyebabymusic.com/). Anyway, my favorite is the Bob Marley rendition. And now, I've added my own words to the instrumental version of "One Love."
One Love
Mom, Dad and Sammie have one big love.
That's it . . . those are all the words, but I like them. And so does she. Sweet girl.
(Have I mentioned I can't carry a tune? Sweet Sammie will someday be saying "MOM STOP SINGING" but for now, she likes it, and I like that.)
Opportunity Knocks
At least I have a record (through this blog) of all of that stuff I said a few weeks ago about wanting to seize the day career-wise, return to my ass-kicking lawyer self, and stop being apathetic about work. So far, returning to my ass-kicking self has been EXHAUSTING.
And, today, the true test (or at least, that's how it feels). Partner called and said he was thinking I would probably need to go to a hearing in another state next week; but that he'd let me know when he decided for sure. He asked what else was on my plate, and I reminded him I am drafting this other huge brief. He said, "oh yeah, so maybe you shouldn't go," and we ended the call. I breathed a sigh of relief, and went back to work. But then, later Partner called back and said, "I really hate to do this to you because I know you have that other brief, and that's really important, BUT, I think you are the best person to go next week" (flattery!) So, ultimately, he left it up to me . . . I have to tell him tomorrow if I think I can do both -- hearing + brief. The thing is, I KNOW I CAN. It might require some longer days, but I CAN do it. But, I would rather not. I CAN do it. I don't WANT to. But, I had a talk with B tonight, and we agree . . . I SHOULD do both. I knew I SHOULD the second Partner gave me the choice. So, I will. Opportunity has knocked, and I'm siezing it. This is where the "reduced schedule" really gets tricky. If Partner had just said, "I need you to go, you have to go," it would have almost been easier. I could have hung up the phone, cried, called B and exclaimed about how I didn't want to go, etc. But instead, its "supposedly" my choice. Anyway, the up-shot is I fly out Tuesday and back Wednesday night, so not the end of the world. BUT, remember Tuesdays are SUPPOSED to be my days off . . . and with this brief, its not likely I'll get a work-free weekend in the interim either.
In other shitty news, I quit our mommy & me group for reasons probably not worth going into (but I'm going to -- briefly). The group leader has ZERO qualifications to be running such a group. I thought it was pure cheese from the beginning, and light on substance, but figured I'd give it a shot. Its basically turned into just an infant play group, which I don't need. Sam and I have friends we can play with. Yesterday, the group (all FOUR of us, including babies) sat for an hour doing "in and out" with boxes and blocks. And, the stupid leader, who apparently has an OT degree in another country (but can't practice here) starts essentially 'evaluating' Sam. She's asking me all sorts of questions. Does she have feeding problems? NO. What does she eat? Whatever I feed her. Does she giggle? YES BITCH SHE DOES. ALL THE TIME. JUST NOT AT YOU. SHE JUST DOESN'T LIKE YOU. So, after about the 10th question, I said, "you know Sam has been evaluated by the Regional Center, including at this very facility. She has an OT, and she has a PT. That's not what we were looking for in this group, and if you are going to turn it into that, we would rather not participate." After we left, I went to my car, called B and told him about it, and cried. [Note theme here - B gets his fair share of crying phone calls. He's a good man mostly!]. Last night, I wrote a very diplomatic letter to the person who oversees all the programs at that place, and just told her I thought the group had gone from a mommy-and-me group to a playgroup, and that the substance was a little lacking, and I wasn't going to spend my ONE afternoon off work at a group that I didn't feel like I was getting a lot out of and that I had to pay to belong to. Sam and I would be better off at the park with friends for that hour. Anyway, I'm disappointed, but oh well . . .
Sam and I followed the shitty mommy group experience with our first of what I hope are MANY "margarita" playdates with a friend and her baby. We met at mine and B's favorite mexican joint, and babies noshed while me and friend gabbed and ate and drank our 'ritas. Good times, and JUST what I needed after the crappy group experience.
But because no blog is complete without photo, here's a pic of Sammie B staring out the restaurant window at the boats while we waited for our friends:
She's growing up so fast!!! I was able to back away to take the picture, and leave her there standing, watching boats.
And, today, the true test (or at least, that's how it feels). Partner called and said he was thinking I would probably need to go to a hearing in another state next week; but that he'd let me know when he decided for sure. He asked what else was on my plate, and I reminded him I am drafting this other huge brief. He said, "oh yeah, so maybe you shouldn't go," and we ended the call. I breathed a sigh of relief, and went back to work. But then, later Partner called back and said, "I really hate to do this to you because I know you have that other brief, and that's really important, BUT, I think you are the best person to go next week" (flattery!) So, ultimately, he left it up to me . . . I have to tell him tomorrow if I think I can do both -- hearing + brief. The thing is, I KNOW I CAN. It might require some longer days, but I CAN do it. But, I would rather not. I CAN do it. I don't WANT to. But, I had a talk with B tonight, and we agree . . . I SHOULD do both. I knew I SHOULD the second Partner gave me the choice. So, I will. Opportunity has knocked, and I'm siezing it. This is where the "reduced schedule" really gets tricky. If Partner had just said, "I need you to go, you have to go," it would have almost been easier. I could have hung up the phone, cried, called B and exclaimed about how I didn't want to go, etc. But instead, its "supposedly" my choice. Anyway, the up-shot is I fly out Tuesday and back Wednesday night, so not the end of the world. BUT, remember Tuesdays are SUPPOSED to be my days off . . . and with this brief, its not likely I'll get a work-free weekend in the interim either.
In other shitty news, I quit our mommy & me group for reasons probably not worth going into (but I'm going to -- briefly). The group leader has ZERO qualifications to be running such a group. I thought it was pure cheese from the beginning, and light on substance, but figured I'd give it a shot. Its basically turned into just an infant play group, which I don't need. Sam and I have friends we can play with. Yesterday, the group (all FOUR of us, including babies) sat for an hour doing "in and out" with boxes and blocks. And, the stupid leader, who apparently has an OT degree in another country (but can't practice here) starts essentially 'evaluating' Sam. She's asking me all sorts of questions. Does she have feeding problems? NO. What does she eat? Whatever I feed her. Does she giggle? YES BITCH SHE DOES. ALL THE TIME. JUST NOT AT YOU. SHE JUST DOESN'T LIKE YOU. So, after about the 10th question, I said, "you know Sam has been evaluated by the Regional Center, including at this very facility. She has an OT, and she has a PT. That's not what we were looking for in this group, and if you are going to turn it into that, we would rather not participate." After we left, I went to my car, called B and told him about it, and cried. [Note theme here - B gets his fair share of crying phone calls. He's a good man mostly!]. Last night, I wrote a very diplomatic letter to the person who oversees all the programs at that place, and just told her I thought the group had gone from a mommy-and-me group to a playgroup, and that the substance was a little lacking, and I wasn't going to spend my ONE afternoon off work at a group that I didn't feel like I was getting a lot out of and that I had to pay to belong to. Sam and I would be better off at the park with friends for that hour. Anyway, I'm disappointed, but oh well . . .
Sam and I followed the shitty mommy group experience with our first of what I hope are MANY "margarita" playdates with a friend and her baby. We met at mine and B's favorite mexican joint, and babies noshed while me and friend gabbed and ate and drank our 'ritas. Good times, and JUST what I needed after the crappy group experience.
But because no blog is complete without photo, here's a pic of Sammie B staring out the restaurant window at the boats while we waited for our friends:
She's growing up so fast!!! I was able to back away to take the picture, and leave her there standing, watching boats.
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