Bedridden and Sad (and a lot of talk about lady parts)

She's tickled by breakfast in bed . . .



Mama's heart is oh-so-heavy (but her smiles help).

Over the weekend, I was feeling a bit of pressure in my lower abdomen. I (of course) hoped beyond hope that it was nothing, that I was just being paranoid because of my history of pre-term birth with Sammie B, but I did remember that feeling of "pressure" as one of the first signs I had of pre-term labor with Sammie B. And, I was worried, even though I told myself *not* to worry, even though B told me *not* to worry.

So, Monday morning, I called my perinatologist and went in. I generally love him, but I think he'd woken up on the wrong side of the bed that morning. . . and I fell a little out of love. Every time I've seen him thus far, I've asked about activity, I've asked about lifting Sam (and he's said "women were putting their kids on their backs and working in fields for generations, so while it may not be ideal that you lift her, it is reality, so try not to worry too much,"). So, his optimism has comforted me up until now and I have been living my life as normal.

I told him that I had a busy weekend, and that I had this slight, occasional pressure in my lower abdomen and he started lecturing me about how I need to slow down, B needs to help more, and that I *need* to remember I'm a high-risk pregnancy. I was sort of blindsided by that, since he's never acted worried before. Anyway, so then he had a look at my cervix. And, for those-in-the-know on cervixes, you know that funneling/shortening means you are *maybe* having signs of pre-term labor (the predictability is difficult, many women might have shorter cervixes in the beginning and go to term, but since it is hard to predict, short cervix = precautionary measures). Anyway, my cervix was "intermittently" shortening and funneling. Bad news. Doctor went into super-cautious mode, told me he wanted me on bed rest for 10 weeks, talked about how if I went into labor now, the baby wouldn't make it, etc. etc. Me = sobbing mess. I texted B "bed rest. can't talk, sobbing."

I just felt, in that moment, the weight of the world. The same weight I felt the day I got put on bed rest for Sammie B. Like this other little person is counting on me, and my body is failing us. Just like it failed Sammie B. Only now, I feel like it is failing this new life AND failing Sammie B all over again. Because she needs a mama that can be fun, that can play in the floor, pick her up, go swimming. And, I can't be that mama if I'm stuck in bed for 10 weeks. It also hurts because everyone keeps telling me that I HAVE to, just for now, put the new baby first. Before me, before Brian, before Sammie B. And, to be honest, in the last nearly three years, Sammie B has been our number 1, she just has. And, right now, putting anything as a higher priority than her just kills me. Guilt that I can't mom up for Sammie B. Guilt that I guess my body isn't meant for gestating. Fear that we'll be on that same familiar NICU roller coaster again. Fear that we won't even make it that far. Guilt, fear, worry. And, just a general longing to pick up my girl and do the things with her that we do.

So, after destroying me emotionally (or maybe just doing his job and putting the fear of God into me), my peri sent me to my regular OB. She'd already talked to him. She said she needed to see my cervix for herself. (Again, for those in-the-know, when the peri had measured, it had intermittently shortened to as short as 1.7 cm, but then lengthened again to over 3. Apparently, 1.7 is bad bad bad (1.5 = hospital bed rest); 3.3 is good good good (above 2.5 is normal)). She measured it at 4 cm, and said she'd swear on her life his measurements were wrong. The thing is though, he showed me the shortening/funneling, so I know he wasn't just making it up. Anyway, the OB mentioned a cerclage as a precautionary measure, but she'd talked to the peri about it and he disagreed. So, she wanted me to see another peri and I went to him immediately. He got the same great measurements she'd gotten, and he took several . . . all above normal. So, he explained that the cervix is dynamic and can literally change in hours or days or weeks, particularly when "maternal stress" is lessened or increased. Because he got normal measurements, he just wanted me home on bed rest for a week, and then to re-evaluate in a week. So, that's where we are. Home. Bed. Sad. Worried. Guilty. And trying not to stress. I'm working from bed this week, our nanny and B are doing all the Sammie B lifting, and well, that's that. It stinks. Pure and simple. But we are optimistic that when I see my peri again Tuesday, things will look better.

And, all my amazing mama friends have already rallied around me, reminding me that Sammie B doesn't care if we are playing in bed, playing on the floor, or playing at the pool. That, "working with her" on her PT *can* (and for now, has to) be left to dada and our nanny, and that this is my chance to spend time cuddling and giggling and playing in bed. That lessens the guilt, though it is still there. Ever so slight.

I know that even if I do end up on long-term bed rest, this will just be little blip in our family's history. I know that. Yet, I feel like all I want to do is hold my girl, and apologize to her little 2.5 year old self, and tell her that mama is so very very sorry if she's not being the mama that she needs me to be.

To my Sweet girl - my first - the magic little girl that made me "mama," I can promise you this . . . every single day I wake up with the number one goal to be the best mama to you that I can be. To be the mama that you need me to be. And, even if the ways in which I can do that (or the location from which I can do it from) is a little limited for this short time because I have to also figure out how to be the mama that your little sister needs me to be, it is still my goal. To be the mama you need. I love you with all my heart, and your magic and your smile comfort me and soothe my soul in a way that nothing else can. I love you.

This is hard.

Her Dada (In Honor of Daddy's Day)!

Ellen, over at Love That Max, recently did a post on the topic of Why Dads of Special Needs Kids Rock . . .

I read the post and while many of the comments resonated with me (Ellen had dads themselves write in with their reasons why they rocked), I thought this one summed up my B the best (and I hope its author doesn't mind me pasting here - I'm linking up!)

"Mothers are nurturing, healing, comforting and when needed, can be a ferocious mother bear. Fathers are the rock. The source for strength and leadership. The father's role is to lead by example. To instill values, morals, determination and will without having to speak a word about them. When our children are diagnosed with a special need, that strength is greatly challenged. It's in these times that the father either falters or shows his greatest strength stands up to the challenge. When that happens, you know, without a doubt, that his child will turn out just fine. That father has taken the hardest, biggest and most important step to being the rock, source of strength and leader that the child will grow up to learn from. That's a comforting thought." —Stuart Duncan, Autism From A Father's Point of View

B doesn't just rock -- B IS my rock. Our rock. He's the wind in my sails when life sucks it out of me. He's the calm to my storm. He's the one who can look at me and say "I'm not worried," and somehow, my own worry melts away.

But, here's the thing . . . B doesn't rock (and isn't just my rock) because our kiddo has some different needs. He rocks because it is who he is. "Dada" just fits him. And oh how our girl loves him. (She said this morning he's her best friend . . . I didn't cry toooo much because I know that on another day, she might answer "mama," but really? Their relationship is pretty magical, like her.).

I've said it here before, I'm often amazed and envious at B's ability to roll with the punches, to put worry aside and just play and have fun and live in the moment. I'm lucky to be traveling this road beside him, because he's the one that continually reminds me to do the same. And for that, and for him, my rock, I'm oh-so-grateful. Sammie B is lucky to call this man "dada," just as we are lucky (beyond lucky!) to call her "ours."







To B - there's no one else I'd rather walk this journey with. And to our sweet Sammie B - your dada and I are so very blessed to walk YOUR journey with you. To hold your hand when you need it, to giggle with you, to hold you, to love you. To be YOURS.




To my rock, and my bee - you both rock. And I love you both with all my heart.

Our Right Now

So I admit, the first few months of this pregnancy were hard for me. I was tired. Like falling over tired. All.the.time. I was nauseous. All.the.time. The nausea medication I took with Sam that proved MIRACULOUS then did nothing to stop the nausea this go-round. I was (to be frank) a little surprised to find myself pregnant and truthfully, a little overwhelmed by it. I had to immediately go off of my anxiety medication, which on top of the nausea, exhaustion, etc., was sort of recipe for a me that was just barely functioning. I worried non-stop about how we'd make it all work. How we'd fit this extra little person into our insanely busy lives. I wondered how on earth I could possibly love any other little creature as much as I love our Sammie B. Overwhelmed.



But now, at almost 20 weeks pregnant, that fog of yuck has (thankfully) lifted. I feel JOY about being pregnant. I love talking to Sammie B about how she's going to be a big sister (to a little sister!) and all the things she'll teach the baby (right now, "eating" and "playing" are her top agenda items). While I'm not necessarily eager to meet this new little one anytime super soon (we'll take full-term please!), the thought of introducing MY girl to our new girl is pretty freaking exciting. Sisters.

When I think about our right now, there are, of course, some things that weigh on my mind. Upcoming doctor's appointments (seems there's always someone to follow up with . . . ), the transition in September from the Early Intervention program to the school district for Sam's services, changes in therapists, the 'what ifs' about the future, etc. The thing is, though, those things sort of "flutter" through my mind occasionally throughout my days. I feel a moment of worry, and I move on. The "what-ifs" that I feel like used to knock me over are just "flutters" these days. And that's good.

As I was driving Sam to her little school the other day and we were happily singing and dancing along with our radio, I felt so incredibly happy. And then I had a moment. One of the fluttery worrying kind of moments. But then, just as soon as it came, it left, and I was back to singing. To happy.

Our days are not always easy. Particularly in weeks like this -- where for the first time in awhile, I'm ridiculously slammed at work (15 hour day yesterday) . . . but then, there are evenings like tonight, where I left work at a decent time, met Sammie B and B for dinner, we laughed and talked over dinner (and B and I finally had the opportunity to chat about our weeks!); we came home and giggled and played together, just the three of us; then I laid with Sammie B until she fell asleep. And, as I laid there with her, watching her little eyelids get heavier and heavier and heavier until she finally gave into sleep and let out her little "I'm asleep" sigh, I thought about our "right now."

And this is what I realized . . . I have my flutters. I have worries. But mostly . . .

Mostly, our right now is amazing. We have this amazing little girl who shows us love and magic and wonder on a daily basis. We have good jobs that allow us to provide for that magic little girl. We have each other. We will soon welcome another little someone to our world. And, we're happy. So, yeah, tonight, my "right now" feels amazing.




And, coincidentally, after that fabulous, "my right now is amazing" moment, I tried to slip out of Sammie B's bed (as we do each night) and I accidentally rolled onto her Dora doll and made her talk . . . and the second Dora started talking, Sam giggled, in her sleep, and said, "Hola Dora!" With that, I smiled. A really big smile, and slipped out of her room to get back on the computer and do more work. Feeling oh-so-grateful for my life, my right now.

I leave you with another picture . . .

Long time no post. Truthfully, this pregnancy fatigue is just kicking.my.butt. I fall into bed as soon after Sam's asleep as possible and that sort of nixes much of my free blogging/surfing the internet/etc. time. I really, really, really hope the fatigue passes (I'm having my iron tested because my doctor thinks this level of tired could = anemic) because frankly, a girl needs more energy than THIS to do work + mom + life.

Other than that, life is good. We've been busy just "being." Sam's still the most loving little girl EVER. She's obsessed with Dora. Her vocabulary seems to expand every day. Her memory astounds us. (It's going to come in handy later - she remembers WHERE she last left things . . . I lose stuff a lot, so I think we are going to be a good team). She makes us giggle A LOT. Pure magic.

And here's a picture of her sweetness (and me).

My Most Favorite Picture Ever (Of My Most Favorite People Ever)

Last month, Sammie B was invited to a little Easter Egg hunt/birthday party for one of the other kiddos at her school. It happened to be the same night that I had tickets to see ROD STEWART (a dirty secret - I adore him. And yes, I was the youngest person at the concert that wasn't drug there by much older parents), but I didn't want Sammie B to miss her party.

Like the fab dad that he is -- B agreed to take her to the party and I went to the concert with a friend. (Since he was raised Jewish, and we don't really do "Easter," I think it was his first Easter Egg hunt too ;o)) He did comment on his way out the door, "I hope you do appreciate this - its such a 'you' thing to do." It is true, I usually work the party circuit and let him stay home. Anyway, I said, "Just make an appearance, you don't have to stay long." So, after we snapped some pictures of the two of them looking ADORABLE, off they went.

He'd be mad at me for telling this, but it is too endearing not to share . . . he went and bought that shirt special for the occasion because he wanted to look more "grown up" than he does in his usual weekend attire - trendy t-shirts and cargo shorts (a look I like much!). It worked. Doesn't he look so grown up?

I texted him a little while into the party asking, "are you having fun?" and got this back:



I took that as a "yes."

They indeed had tons of fun, and stayed for the entire party . . .

I enjoyed every second of Rod and Sammie B and B had a fun-filled day as well, and now both have their first easter egg hunt under their proverbial belts.

I'm lucky to call those two "mine."

"Happy Mommy!"

My Mother's Day could not have been more perfect. I slept in . . . my girl came and cuddled with me in bed (and I tried teaching her to say "Happy Mommy Day!" but she just kept saying "Happy Mommy!" which I thought was even better), B and Sammie B surprised me with a gift card for a FULL day at my favorite spa, which I've never had before and can't wait to redeem, we rented a boat and went motoring around the marina/ocean that I often forget is less than a mile from our house (!), Sammmie B and I took glorious nap, and then we went out for a fabulously yummy dinner.

Totally totally totally made up for my working Saturday. As I told B before I drifted off to sleep last night, Sunday nights have a lot less "sting" when I know I've made my short weekend with the family count. Every second.

To Sammie B . . . who will always be the little girl who made me "Mama." There's no role I've ever filled that felt so perfect and wonderful and right. Each moment I spend with her is filled with more magic and love than I ever knew possible. Sweet girl, you make me a "Happy Mommy" every.single.day!

Lighter. So Much Lighter.

Remember how we had to re-do some of the tests that were done on Sam when we were at Johns Hopkins? Well, finally, finally, all are re-done and we have the results. Normal. No "answers" so to speak, and it feels so so good.

To re-cap, some of Sam's metabolic tests came back a little "off." Results that we were told could mean something (some of which were very scary) or could have just been fluke results because her diet was likely off while we were traveling. Truthfully, I could have taken her for the re-do right away, but I kept putting it off. Because I didn't want her to miss school, because (of course) taking your kiddo in for blood work sucks big time, but also (mostly, I think) because I was terrified of the results. Terrified.

But, we finally redid them, and got the results last week. Normal. And, we got the official word from the Hopkins people that we could just chalk the earlier results up to a fluke thing and dismiss some of the possible things - the scary things - we had worried about after seeing the report. I don't think I even realized how much those tests were weighing on me. Because even though my gut told me that it was just a fluke thing, I would still have moments of panic worrying that my gut was wrong. But after hearing "normal," I literally felt 1,000 lbs lighter.

I also felt a huge dose of perspective. Huge. Along this journey, what many of our friends (and even some family) may not realize is that we've had some pretty scary possibilities thrown at us. Because Sam has always been in good health, they were always presented as very remote possibilities, but still . . . possibilities that no parent would ever want to consider. And now, we finally, finally feel like we can "officially" shut the door on those possibilities. And, suddenly (or again, because damn this journey ebbs and flows) "developmental delays" and even "mobility disabilities" just don't feel so big or scary. Those things we can deal with. The scary possibilities put that into perspective in a way that is just impossible for me to put into words.

And, the genetic testing similarly has been chalked up to a fluke. As it turns out, further testing showed that I have the exact same chromosomal abnormalities (both the deletion and the duplication) that Sammie B has. And since I didn't have the same mobility issues or delays that Sam has, the geneticists have said they are pretty darn certain that these things are not causative of anything. There is a very, very remote possibility that Sam is just affected differently than I am by these abnormalities, but both the geneticist and the high-risk OB I'm now under the care of has said they are 99% sure that's not the case. Just a fluke. To everyone who knows us, they know Sammie B looks exactly like me. Now we know - she's no doubt a "mini-me" -- with our unique chromosomes and all . . .

So, ultimately, five months out, the Hopkins journey is officially behind us. It didn't lead to answers for Sam's delays, but as I've said before, we've grown comfortable in this grey area of no diagnosis. Some of the possible things thrown our way were MUCH scarier than grey. And, without a diagnosis, the sky truly is the limit. There's no label or prognosis telling us what Sam is or isn't likely to do. And, so, we will continue to imagine all the things our magical little girl WILL DO in her lifetime.

There is a possbility that we'll wind up with a cerebral palsy diagnosis - as sort of a generic, umbrella term for a "movement disorder," because we've ruled the other possibilities out. Funny thing is, when we started this journey, the term "cerebral palsy" scared me to bits. If a doctor then had suggested it as a possibility, I'd have been a puddle of tears. Now, after the stuff we've considered (and ruled out), its sort of no-big-deal. Just some words. Some words that don't change who Sammie B is. Some words, though, that would help us get and keep services for her, which is particularly important now that she'll be transitioning out of the early intervention program in the next six months. Anyway, we aren't even sure of any of this - just another possible thing our developmental pediatrician mentioned - that although her MRI was normal, she certainly fits the clinical definition of hypotonic CP, so we could fall back on that . . .

In other news, I'm officially in my second trimester, and thank goodness . . . the godforsaken nausea and fatigue that nearly knocked me out of commission for the first few months has passed. I'm still not 100% but finally, finally feeling more like myself again. March and April were tough, tough months for me. I felt like for much of it I could barely function. I fell behind at work and I just felt like all my to-dos - for both work and life were piling up. So, B and Sammie B are spending a fun day together today and I came into the office to try to organize things a little and knock out a few (or a lot) of my to-dos without the normal weekday disruptions. (Um, except that I'm obviously on a blogging break now!)

I also have a tiny little baby bump, and I love it. (I'll eventually capture some photos - the problem is that B leaves for work long before I'm up and ready, and I never feel photo-ready by the time I get HOME from work and see him, and the self-taken shots in the mirror just don't do the trick). This week we are going to a charity dinner to benefit Sammie B's early intervention preschool program and some other organizations that serve kiddos with special needs. It's at a fancy pants hotel in Beverly Hills, and the attire is "club lounge." Yeah. On a weeknight?! Needless to say, nothing in my maternity wardrobe (which I've enjoyed pulling out again!) fit that bill, so last night the three of us hit the mall, and I ended up with lots of fun new goodies, including a pair of designer maternity jeans, a sassy short black mini-dress, and a super cute swimsuit. When I was pregnant with Sam, since I had to buy an entire maternity wardrobe, I wouldn't let myself splurge on good jeans. This time, I decided since I had so few clothes I'd need to buy, I could do that. I can't wait to wear them! Sometimes, its the small pleasures in life :o)

After working all day today, I plan on enjoying my Mother's Day tomorrow. My last Mother's Day to a mother of only one . . . I try to look ahead and imagine my life at this time next year, and I just can't. Just as I don't think pre-Sam I could have imagined how much magic and joy and love she'd bring to our lives. I can't wait to spend the day with her tomorrow. My magic little girl.

She made this at school, and I swear, it melts me everytime I look at it! I brought it to work with me today and just seeing it on my shelf makes walking into my office a happier thing!



Finally, I have to just share my favorite recent "Sammie'ism" (there are so many) - when B throws Sam into the air, he's taught her to say "one-two-three-four-go!" So now, anytime he does it, she yells "more please!" and then "one-two-tee-por-dough!" Only many times she gets so excited so it all runs together and comes out -"one-tee-por-dough!" It's really the cutest. Trust me. Those are the little moments of perfection in life that I hope stay etched in my memory forever.