Magical Monday: A Day in the Life

Step 1:

Wake up, put on a super cute outfit. Flash a winning smile to the camera. check.



Step 2:

Off to PT. Practice some standing, maybe a little walking. The usual. Hard work.



Step 3:

Now on to OT. Practice lots of stuff there too. More hard work.



Step 4:

Catch a quick nap in the car on the way home from OT; eat a quick dinner, then ST!!! This one doesn't feel like "work" though . . . its just fun!



This little girl works harder than any two-year-old ever should . . . and makes us oh so proud. All the time.

Sam and I are off to StL this weekend to see my mom AND for Sam's big StL debut - she hasn't met any of my high school, college, or other hometown friends, and I can't wait to share her with them. We leave Friday, so I had to move some of her therapies around this week . . . resulting in the kind of day she had today - PT, OT, and ST! Kind of intense for a two-year old, right?! Yet she did fabulously all day :o)

Her schedule is a bit insane! We've got more updates coming, but those must wait for a night I don't have work awaiting me. But, the great news . . . the RC approved Sam for a center-based therapeutic pre-school program (an EI program for those that know the lingo!). They have a super-low ratio of children to adults (2:1) and PTs and OTs on staff and teachers with masters degrees in child development. We are SUPER excited. We (me + B + our nanny) toured three different places, and agonized (okay nanny + I agonized, B was less tortured by the desicion, b/c that's just who we are). We really feel like this is just going to be a GREAT fit for our girl. The most important thing for us was finding a place where we felt like they would work on her weak areas (like her motor skills) but also address the development of her stronger areas (cognition, social, etc.). I feel like we spend so much time in therapy, working on the areas where she's struggling, that sometimes, she doesn't get to JUST be a kiddo. We also worry that because of her speech/motor delays, she's underestimated in other areas . . . or that she's treated like she's younger than she is, which stinks. So, we wanted a program that would truly truly address her as a "whole" child, not just one with delays. We think we found JUST that program, and we are super excited. So, here's to hoping that it is indeed a perfect fit!

She will be going three mornings a week, and whoever takes her (depending on the day, it will be either me, B or our nanny) sticks around for circle time - the first 45 minutes of the day. . . then leaves for two and a half hours before coming back to have lunch with her there. So exciting! I fought (um, advocated) HARD to get her in this program because we KNOW she will benefit from it. This will help her be better prepared for the inevitable transition to school-system based services next year, and we HOPE she's just going to flourish in this environment. It is, of course, going to add to her already insane schedule, but we'll make it work. Somehow, someway, we'll still manage to fit in her other SEVEN appointments each week (2 ST, 2OT, 2 PT, and alternating weeks swimming/hippo (horses) therapy). . . . Seriously, we may need some magic to make this schedule work!

Friendsies

A few weeks ago, Sammie B and I had a playdate. With a mama who I met in one of those meant-to-be kind of ways. And even though it was our first in-person meeting, we talked non-stop for hours, stopping to talk to (and sign with) our ADORABLE children without ever skipping a beat. It felt so good to be with someone who just gets it. Someone who doesn't bat an eye at the signing, the facilitated standing, etc. Who had fantastic advice on things like hand-over-hand OT skills, etc. Someone who truly truly understands what I mean when I say some fears just take my breath away. She gets it. No doubt.

So so refreshing. I called my mom on the way home and said, "oh mom, we just met some 'good for our soul' kind of friends." And I meant it. We hope we are friends for a long-long time, and Sammie B and I are eager to follow H and her sweet L's journey in life. If things work out as planned (ahem, if the RC stops being so darn difficult and approves funding for it) Sammie B and L may be classmates at the center-based program we've picked!

Our playdate was a good day. One of the best kind of days.



In other friendsy type news, Sammie B's theratog has now made its way across the country to this amazing little man in Michigan. We are so hopeful that it helps him master the art of independent sitting, giving him a new perspective on the world. I look at my sweet Sammie B and I wish she didn't have to work so stinking hard, but if there are things that make things less work, we try them. The theratog was one of those things, and we hope little William finds it just as helpful. He's a hard-working little man as well.

And finally, B and I are planning to fly into Baltimore with Sammie B a day before our JH appointment so B can ride the train into DC to see a friend. I know I'll be a basket case that day worrying about the appointment the next day, so I'm going to need a distraction. And now, this little guy is going to help with that! His mama and I have connected via our message board, and I can't wait to meet them. I'm not sure though that Baltimore is big enough to handle so much four-eyed cuteness. ;o)

This world -- the SN world -- is not one we ever envisioned ourselves a part of. But here we are. Amidst so many many wonderful amazing fabulous souls. Friends we are oh so grateful for.

And then there's this . . .

Just when I think I'm going to drown in the wonder and worry and stress, I get a picture like this. My little rockstar. Standing. Alone. With only the help of the wall for balance. Dear sweetie, keep rocking life. Your daddy's right . . . none of the other sh*% matters . . . your possibilities are endless.

This life is a roller coaster, but I'm hangin' on.

Wishing

It's sort of been 'a week' and if I don't memorialize at least part of it here, I might explode with whatever this emotion is I'm walking around with.

- Wishing life wasn't so darn complicated. Wishing "services," and "IFSPs" and "regional center funding" wasn't so much a part of my every day.

- Wishing my heart didn't rise and fall with evaluations, funding decisions etc. Hating myself for the fact that I let the worry ruin moments of my life instead of just enjoying every second of my life with my sweet girl and the sweet daddo too.

And just to remind myself of some awesome words of wisdom I need to be reminded of often (stolen/adapted from this blog): Evaluations only tell us what Sammie B is doing RIGHT NOW. (Hell, not even "right now" but rather during that one day, that three-hour testing window); the evaluations say NOTHING about what she will do. And NOTHING about her extraordinary personality. Her magic. On those points, the damn evaluations are curiously silent.

- Wishing EVERY life decision didn't have to take into account the things listed above that are part of our lives. It really makes life oh so complicated.

- Wishing that I had a mama-gut that could be trusted, instead of the 100% certifiably insane one I have (the one that for weeks has been telling me things will be "ok," whatever that means, or whatever life brings our way, but the one that is now getting anxious and nervous about upcoming doctor's appointments . . . like the JH appt in December; and terrified that we'll end up with a "label" none of us want).

- Hoping that if Sammie B ever reads this (or any other "worry" filled blog post) that she'll know that NONE of this is about ANY desire AT ALL to "change her." I adore her. Her giggles, her smiles, her hugs, her fabulous sense of humor; BEAUTIFUL BEAUTIFUL HER. I don't want to change her, not even for a second. I don't want her to be anything or anyone OTHER than exactly who she's meant to be. But (probably like every mother) I just wish wish wish that I could make things easier for her. That in the snap of a finger, I could make it so that her eyes and her body worked a little more smoothly and she could jump up and start exploring her world. So that's really what this is about. Wishing I could make things easier. Like the gut-renching sobbing, my heart feels like its broken into a million tiny pieces kind of wishing.

-Wishing this week hadn't "beat me up" on EVERY single front. Or at least it feels that way. Wishing I'd had more time to retreat from worry and just snuggle with my bean and my hubs. Wishing work hadn't been 100% chaos, because then, maybe I could have.

- Wishing I was home right NOW, snuggling my sweet, perfect, wonderful Bean. Even if sometimes, "snuggling" ends up looking kind of like this:

The last of the birthday letters (for this year!)

I asked B and the grandparents to all write letters to Sam for her birthday this year. . . my idea is that someday, I'll have all the letters to Sammie B from this blog made into a little book for her! Here's the last of the letters for this year! Now, I'll get back to my normal blogging:o)

Hi Sammie!

We are writing to you on your second birthday to let you know how very much we love you! You are a very special and very precious young girl. Sometimes we see you when we're in California at your home, sometimes we talk with you and see each other on the computer by way of the internet (thanks to Skype!), and sometimes we see you in pictures that your Mom, your Dad or your Nanny send to us. But even if we don't see you every day, you are always in our hearts. As each day, week, month and year have passed you have grown in so many ways. You have faced many obstacles that have been put in front of you – and you are becoming stronger all the time. But you are not only becoming stronger, you are also becoming sweeter and smarter with each passing day. We are so taken by who you are and who we see that you are becoming. You are such a wonderful, bright, life loving young girl. We are looking forward to seeing you more and to watching you grow in so many ways.

So much has happened to you over the past two years...there have been so many challenges and you have done so much to get where you are – from your corrective eye surgery, to the physical and occupational therapy for your low-tone muscle issues, to the restrictions on your diet to accommodate your allergies. You deal with these issues and, in the end, wind up with a precious smile on your face. A smile which warms our hearts more than you can possibly imagine. There are so many people that have come to know you and have been taken in by your sweetness and the beauty of your personality and the intelligence that we all see showing itself and growing – more and more with each passing day. We know that this will continue through your life.

We live far away from you and we see you as often as we can - but that is not often enough. We wish that we can see you more. The older that you get, the more that we see you enjoying your books, brimming with excitement at the zoo, creating art at your desk, or playing with your toy kitchen - and the more that we miss you and the more that we want to see you and to be a larger part of your life.

Samantha Abigail – please continue growing into the very wonderful and special person that we see you becoming; please continue loving and learning from your Mom and Dad; please continue enjoying your life - meeting and moving beyond the challenges that are in front of you. You are a special person with so much to give to others and there is so much for you to see and experience. Know that you are deeply loved by us and by so many people around you who will always be there for you.

We love you,
Nana and Papa

Another Special Letter!!

Dear little Sammie B,

There are really no words that can express how much you mean to us! From the moment that we found out that you were on your way to us, we have been totally, head over heels in love with you.

I will never forget the phone call that your mama made to tell me she was expecting you. While walking around shopping at a teacher’s conference, I had longingly looked at baby toys wishing I had a reason to buy for a baby. Just a few hours later, your mama called and told me the wonderful news about YOU! Honey, I started shopping for you the very next day (and have never stopped!)!

Your PawPaw was just as excited as I was and even more thrilled to learn that you were going to be named after him. It wasn’t long before he was on a plane to your house to help your dad paint your room that lovely shade of lavender that has since become your signature color ;o). After you were born and it was offically a "Sam," he called everyone he knew to tell him that his precious little namesake had arrived. And he's never passed up a chance to tell a stranger either!

While we were waiting for you to arrive there were other phone calls. When your mama got put on bed rest and was so so scared, I rushed to California to give her (and dada) the TLC THEY needed! I made them my famous chicken and dumplings and my special PBJs (don't worry I'll teach you the trick to those someday!).

Finally, we got the phone call that you were on your way. I so wanted to be there to welcome you to the world in person but didn’t quite make it in time. However, I was there before you were even one day old. When your dada walked me down to
the nursery to meet you I thought my heart would burst! To me you were (always will be) the most beautiful baby in the world. It was scary for mama and dada (and all of us) to have you arrive early, but I knew, just looking at you, that you would be fine. With all of my heart, I just knew.

PawPaw and I have made several trips out to see you over the past two years. We even got to be there to celebrate your HUGE first birthday part, that your parents MAY have gone a little overboard with (live music, 50+ people!). But really, each trip is more special than the last because we keep falling more in love with you each time. You have amazed and inspired us in so many ways. You are a hard little worker and you can be quite the little entertainer as well. Each visit brings new tricks. Your little stinky face is so adorable, when you shake that little butt I laugh out loud, and oh my goodness, when you reach out for me to hold you, I am ready to leave everything behind and move to CA!

We wish there were words to convey how truly special you are to so many people. Your mama and dada have taken on the role of parents with just as much drive and enthusiasm as they do in every thing they undertake. In your dada’s letter he said that he wants you to remember that life is a journey and that it is! We want you to remember that is more than ok to travel at your own speed and make stops along the way to enjoy the small things. You have quite a group of supporters, in your parents, in us, in your Nana and Papa, and we will all do everything we can to make your unique journey the best it can possibly be.

When I think about you part of a song often comes to my mind, “On the day that you were born the angels got together and decided to create a dream come true,“ that angel my darling is you!!!

Happy Second Birthday!!!
Hugs and Kisses,
Gigi and PawPaw

From a VERY Special Guest Blogger (DADA!)

"Prepare the child for the path, not the path for the child"

Sam,

This is my first time writing a letter like this to you (unlike your mother who has now written a few letters) so please allow me to start at the beginning. The past two years (officially now two years and 7 days) has been intense. I have felt the highest of highs and felt more pain and bouts of worry than I have ever experienced previously. But through it all, there has been one constant, and that is my absolute and undying love for you, my daughter. No one knows what the future holds, anyone that claims to know is nothing but a charlatan and you would be wise to turn and walk the other way. (One day you should ask your mother and I about the fortune telling cat on the 3rd Street Promenade in Santa Monica). That being said, there is one certainty in your life; your future will be bright and limitless.

You see, in these past two years you have taught me to rethink my measure of success. You have taught me to rethink what's important in life. You have taught me to rethink my understanding of my own personal limitations. You have taught me to rethink what I thought I knew about how the world works. Through your eyes (and through your delicious purple specs) I have seen that the journey is what matters. And in the end, it only matters where you end up on that journey, not where you started. All we can do, and indeed all we have been doing to this point, is to help you find your way on your own journey.

I titled this letter, "Prepare the child for the path, not the path for the child," because as the author of that quote wisely understood, in life, we can not plan for or control everything for our children. In fact, when it comes right down to it, we can not plan for or control most everything in our our own lives. Yet what we can do as parents is help our children be the best they can be so that they are prepared for whatever lies ahead in their own journey. And believe me little girl, life has already thrown quite a lot at you, leaving no doubt in my mind that you will be prepared for any bumps, twists or turns in your path.

Your mother and I may never be able to get you to understand how much you have meant to us and how much we have learned from you. To be honest, we may never fully understand ourselves what we have learned from you let alone be able to adequately express those things to you in spoken or written words. Which is why this letter or any future letter can only ever scratch the surface of how much you have changed the world around you for the better. You see, part of the fun of being magical, and you are most definitely 100% pure magic, is that with your magic you get to change the world and the people around you. Believe me when I tell you that all the people you meet on your path will undoubtedly be affected by your magic. Just ask those that have already been touched by you. And although you may never be able to change water into wine (has anyone ever been able to do that?) you have already put your spell on me. I am spellbound by all of the big and little things you do. From the inch-stones today to the milestones of tomorrow, I am along for this magical ride.

The best I can describe it is that in your own way, you have helped prepare me for my path and allowed me to stop trying so hard to prepare the path. You have accomplished this in only two short years. Imagine what you can accomplish in a lifetime. I can, can you?

I love you lots and all over the place.

Dad