Birthday Letter To My Magical Little Bean

Dear Sammie B,

I find it so very hard to believe that TWO years have passed since you made your entrance into the world. In some ways, it seems like just yesterday, I was sitting in the rocking chair in your room, feet propped up (doctors' orders) while on bed rest, reading the "Little Love Bug" book to you while you were in my belly; but in other ways, it feels like you've been a part of me, a part of us, forever. Daddy and I often say how we barely remember our lives before you. And, we certainly can't imagine our lives without you.

As I sit here thinking about what to type, I wonder what you'll be thinking someday when you read this. What will you want to know about you, about us, about our little family at this very moment?

At two years old, Sam, you are magical. Seriously. When people ask me how you are doing, or how motherhood is, or anything along those lines, the only word I can ever come up with that even comes close to capturing YOU, to capturing how it feels to be your mama, is "magical." Because all the other words, they seem too simple, or too small, to describe the magic that is Sammie B. You are the most loving, sweetest little two-year old I could imagine . . . from your flirtatious little grin to strangers in restaurants, to the way you reach for us when we walk in the door, smiling from ear to ear, to your sweet sweet hugs (complete with you rubbing and patting our backs!), or your constant little kisses and cuddles, you my sweet girl, are magic.

You are also a funny little lady. You have recently started really hamming it up .... making funny faces (like your stink face) to see if Daddy and I will do them back to you. Fake crying. Putting daddy's underwear on your head while he folds laundry. TONS of giggles. That is you. Giggles. If I could bottle up your sweet giggles (or the sweet way you say "Mama" in such a soft little voice) to keep forever, I would. Because I know that someday, your little girl giggles will turn into big girl giggles, then grown-up laughter, but my hope is that you will always take time for the giggles, smiles, and hugs. Because THAT'S where the magic lies!

You love to play with the play kitchen at PT (and hopefully you'll love your new one here as well!). You love babies. You LOVE your "Baby Signing Times" dvds sooo much and you ask for them (via sign) so many times during the day and get so very excited when we put them in. You also ask me to sing you the "baby song" from the end of one of those dvds at night when you are falling asleep: "I know this is where I'm meant to be. I'm so glad that my baby is you." I sing those lines over and over and when I stop singing, you sign "more, more." You don't have many words just yet, but through your signs (which you pick up so quickly) and your smiles and your eyes, you communicate everything to us. Magic.

You are the hardest working little two-year-old I know. You have therapy 5 times a week (plus swimming) and yet, you handle (most) of it with smiles and laughs. You only cry when its really really hard, and we understand. I wish more than anything that you didn't have to work so hard. But this is your story, sweet girl. And though sometimes all the therapies and doctor appointments are a little overwhelming to me and daddy, its only because we care so very very much. Because we want, more than anything, to find a way to make things easier for you. My greatest hope is that WE open all the right doors for you . . . to enable you to be your best self. Your incredible little magical self.

I must tell you I love you at least 20 times a day, and I probably think it hundreds more. My heart is so full of love for you, I can't even put it into words. And just when I think its impossible to LOVE anymore than I already do, I find myself staring at you as you take in the world, or figure something new out, or share a giggle with daddy, and suddenly, suddenly, my heart feels like its going to burst, and I fall even more in love. So though things might not always be easy, they are magical and wonderful and so so full of love.

I love seeing the world through your eyes. Even places we've been before are made magical by taking you there . . . because we get to see them as you do. Sometimes, I look at you, then look at daddy and say things like, "she melts me." You do. In a way I didn't even know was possible until I became "mama."




My sweet girl, I have so very many dreams for you. But I know that YOU will show us which dreams are meant for you, and I can't wait wait to live them with you.

To my magical little Bean . . . Happy Second Birthday . . . I love you with all my heart, and because of you, somehow, my heart just keeps growing.

I'm so lucky to be your mama. I'm so glad that my baby is you.

Love,
Mama

Growing Bean

A TEENY-TINY BEAN: (11/26/08, 2 months, 2 days old)



ONE YEAR OLD:


TWO YEARS OLD!!


So, at this rate, she should have a full head of hair by the time she's 20? Baldish never looked so stinking cute!!

Sweet Reminiscing

(Literally, to the MINUTE as I type) two years ago today, after six weeks on bed rest and FINALLY being released to light activity, I had lunch with a my dear friend T, and my water broke. And I was off to the hospital to give birth to a little girl that I hadn't yet met, but who I was already hopelessly hopelessly in love with.

And two years later, I'm even MORE hopelessly in love with her sweet face, tender hugs and kisses, and magical little giggles and smiles. After what has been a VERY intense week -- with B out of town, busy busy busy cases at work (including a filing and hearing), and endless phone calls to get stuff lined up for our IFSP meeting next week with our RC caseworker -- tomorrow we are off to San Diego and Sea World to celebrate two magical years of our sweet Bean.

Stay tuned for the annual birthday letter to Sammie B (plus some guest writers' letters), the annual "look how much my pink bear has shrunk in the last year" picture, and pictures and tales from our San Diego adventure.

I'm so very very lucky to THIS little girl's mama.

Here's where we are. . . now where do we go?

Making decisions, managing services, appointments, etc. is stressful. I lay awake at night and second guess my (our) decisions and wonder if there's something else we could be doing, or someone else we could be seeing. Something we or (they) are missing. I've gotten better, and its no longer an unhealthy "google-panic" so to speak, but I am constantly looking for more things that could help us in enabling Sam to be her best self. I've found WONDERFUL resources this way (like the JH clinic, or our new cube chair desk, which is Sammie's favorite place IN THE WORLD to sit) and I've "met" so many amazing parents on similar journeys. Moms that are now my friends, moms that just "get it." Moms that I can literally send an email to that says, "I'm having a day," and know that they just get it. Friends I couldn't live without.

With Sam's second birthday just around the corner, we are filled with so much joy. TWO years with this little girl in our lives. Two magical, wonderful years.

But, with the RC program, birthdays also mark evaluations and service plan reviews. SO, there's that. So, in addition to celebrating our magic girl and our magic journey as parents, we are also at a place where we are thinking about what our next steps can and should be, and I'd be lying if I said I wasn't totally and completely overwhelmed at times. Like last night, when I stayed awake until midnight reading about treadmill therapy for kids (which Sam's PT does for her) and its effectiveness (?) and gait trainers and pediatric physiatrists and oh my.

Anyway, here's where we are . . .

We were hoping to get Sam an appointment at the Johns Hopkins Hypotonia Clinic before the end of the year (because we've paid our insurance deductible this year AND because we WANT to go. Like now). I learned about the clinic through one of my mom boards, and I LOVED the idea of taking Sam to a place where the doctors all specialize in hypotonia and a place where specialists from different areas of medicine (they have a developmental pediatrician, an orthopedist, a pediatric physiatrist, pediatric neurologist, geneticist and neuro-muscular specialist!) all work collaboratively to treat each child and come up with a very individualized treatment plan.

We've already seen so many "ologists" - neurology, orthopedist (okay that doesn't end in ology), geneticist (nor does that), neuro-opthamologist, etc. we don't know what to do with ourselves, and things are going really well with Sam (our pediatrician told me we could just stop seeing the specialists and be done with the whole testing thing if we were comfortable with that at this point). And B and I are firm in our belief that because thus far, all of the tests that have been done on Sam (metabolic, genetics, the MRI, etc.) have come back normal (whew!) and Sam is becoming older, understanding more (and looking at us with such fear when she's poked and prodded) that we will NOT put her through any additional tests unless (1) the results of those tests will somehow change the course of treatment (which as you all know, is therapy, therapy, therapy) or (2) it would help her get services/help she would otherwise not get.

That said, although we are "done" with testing (we think) we felt like it would be silly to NOT go to the JH clinic. So, I did the intake and learned that it would be at least two weeks before they even called me for an appointment and probably 4 months until we could get an appointment. I called on 8/31 to do the initial screening and learned yesterday they are still returning calls from the middle of August, so it will be awhile, which is kind of disappointing. We'd gotten really excited about it (well as excited as you can be to traipse your poor tot across the country to doctors), but like everything else with Sam, we'll be patient. Patient.

In the meantime, we are sort of on the fence about whether to just go ahead and follow up with Sam's neurologist and geneticist here (at our last appointments with them, they said to follow up in 6 months, and its been six months, but because of our view, our pediatrician's view, etc. we didn't). And, we've been thinking of seeing a pediatric physiatrist (very few in the country, but there's one near us). I just don't want to feel like I'm leaving any stone unturned. Perhaps because JH is going to take so long, that we should just follow up with these others. . . but fitting MORE appointments in our lives is not easy, and frankly, with all of Sam's therapy appointments (we are up to 5 a week + swimming) I HATE dragging her to MORE doctors, MORE evaluations. But, we'll probably do it. We can stand firm to OUR view and approach to testing, but hear what the doctors have to say. I think part of me is scared to go back. I know (or at least fear) that as she gets older, and the progress isn't as quick as we'd like, that someone (a doctor) will hit the panic button, and I'm terrified. No one has yet, but the thought scares me. But as B said, being afraid of bad news is NOT a reason to NOT go to the doctor!

We are also going to be touring an early intervention pre-school program, which is equally terrifying (to me). I love love love having Sam home with our fabulous nanny, but worry about the socialization and independence aspect. Sam is very very clingy (in a way I love!) to me, B, and her nanny, and once she turns 3, we'll have to transition her to pre-school (where she'll get therapies based on her needs at that time). I don't want that to be a horrible horrible experience for her, and we have some great early intervention pre-school type programs run by OTs and PTs here. . . so B and I are touring one at the end of the month. The program is only for a few hours three mornings a week, but might be great for her. I'm sure that we (B, me, and nanny) all baby Sammie B a bit and I think the program would encourage some independence from her. I don't know. How DO I/we know if we are doing the right things?

We'll see what we think when we tour. Thinking about it makes my stomach hurt as I type. Those programs don't include one-on-one therapies, so on top of those mornings, we'd still have to fit in her current therapy schedule, and part of me wonders if its just too much . . . but we shall tour. With open and excited minds. Because we'll do ANYTHING for this little bean. To the ends of the earth!

We had Sam's 2-year check-up with our general pediatrican Friday and she is very pleased with how we are doing. She said we are managing all the services oh so well, and that she really does support our decision/approach to testing, and that she thinks going to JH is not a necessity, but if we can, might as well. I adore her. I always want to invite her to go out to lunch, to be my friend, but that seems weird. But honestly, she's the BEST pediatrician we could have found. For me.

She has suggested we start seeing a developmental pediatrican. They sort of manage the other specialists, and oversee the "team." She thinks it will help in that (1) I won't have to be the "manager" of all of this and can let the developmental pediatrician do some of that and (2) when we get closer to Sam's third birthday and have to start talking about transitioning from the RC services to the school district, the developmental pediatrician will be her best advocate. Another specialist, another evaluation, another appointment, another tummy ache (for me). We've made the appointment with one she recommended, but its not until January 5th. So, we wait. Patience.

I so just wish I could make things easier for Sam. Could make her little body DO what her mind wants it to do. Wish wish wish.

Only other news from the pediatrician is that Sam has fallen to the 25th percentile for weight (she was higher) in the last year, which the doctor said isn't uncommon when babes become picky little toddlers, as she has, and particularly ones that are on restricted diets (as she is for her wheat allergy). BUT, we are supposed to make sure she's getting more fatty foods . . . olive oils, cheese, yogurt, peanut butter, etc. So, add another thing to think about to our list. Ah, to the ends of the earth!

That's the stressful stuff. The more exciting stuff (if you've managed to read all this, congratulations!) is that Sam is just doing so well. She's starting to take more and more independent steps (with a lot of support in her from her PT) in therapy, and beams with pride when she does. Getting her to stand is easy now, and she rarely protests with the spagetti legs of days past. Her little backward army crawl/roll is nearly perfected, and she's actually really getting around now . . . rolling off the changing table even! A first for us. We've gotten used to her being sort of non-mobile, so her sudden movements sometimes dwarf my reaction speed. But, no serious injuries. We have more and more rockstar-esque PT sessions and way fewer of the whiny kind. The heart to heart with our PT also really paid off . . . sessions have been really really good lately!

We have a busy week ahead--I have a filing on Wednesday, B is out of town for a conference, and Friday am we leave for San Diego to celebrate the precious Bean's birthday at Sea World :)

And another of those moments (the defining kind) - a few nights ago, Sam fell asleep alternating between rubbing and patting B's back while he slept. I laid there and just stared in awe at her. Could she be any sweeter? I think not.

Now to leave you with some recent pictures:

Our sweet little worker BEEEE in PT:



Super duper stoked over her new "desk:"



Just lounging in her pjs in her cube chair (the desk above, minus the desk part) watching some signing times dvds:



And all dressed up and headed out to dinner (and standing oh so well!):



And finally, seeing dada off to his conference this morning:



Sweetness, love and magic. And some worry on top. That's what this week has been.

One of THOSE Moments

In a previous post, I wrote about the moments that define us as a family. The everyday, ordinary, loving, magical, giggling, happy moments . . . and last night we had one of those (not a rarity in our house, but this time, I'm just remembering to blog about it)! I actually laid down with Sammie B with plans to get up to do work after she fell asleep, but she was oh so tired, and fell asleep with her forehead touching my (equally large) forehead and her nose touching my nose, with her little baby doll squished in between us. I laid there, loving the snuggles, thinking, "I could lay like this forever." So, I didn't get up, and the snuggles were well worth the extra work I have to do today. Because those moments are the moments I can't let pass. Three generations of girls (Sam + Me + Doll if you were confused) just snuggling in bed, content as can be . . . THE BEST.

And because I don't have a picture from last night . . . I leave you instead with a picture from her nap today (with her baby). Pure sweetness this one.



When we go to bed at night, she now signs for her baby, and as soon as she wakes up, same thing. Such a little lover. My little lover!

Words to Remember

Listen to Mustn’ts, child, listen to the Don’ts. Listen to the Shouldn’ts, the Impossibles, the Won’ts.
Listen to the Never Haves, then listen close to me. Anything can happen, child, Anything can be.
-Shel Silverstein

ANYTHING.

Stinkage

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.

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.

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.

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.