In a funk . . .

I feel like most of the blogs I read, and everyone I know on facebook, has been listing the things they are most thankful for this month, in the spirit of the holiday. I didn’t. I don’t know why, but those facebook status updates irked me this year. I’m all about being ‘thankful’ but I find it odd to do it on such a public forum. Like, can’t people just be silently grateful for what they have? I feel like too many of those status updates are really just people’s way of shouting to the world all the wonderful things in their life . . . e.g., “My husband is so freaking awesome; my life is so awesome; etc.” I posted once about being thankful that my blackberry allowed me to work remotely and travel to see family, so I guess I’m guilty too, but I got sick of logging into facebook every day only to see/feel like people were just using the month to brag about the awesomeness that is their life.

I may just be being a big fat scrooge. I’m in a funk. I thought about writing a Thanksgiving blog post about how grateful I am that Sam is constantly making progress (she is, lately more than ever) or how grateful I am that we get to start the EI preschool; or how grateful I am that we have such supportive friends and family; how thankful I am that I have a magical little girl (I do!). I AM thankful for all of those things, but truthfully, I wish that my “gratitude” could be a little less delayed-centric, if that makes sense. Somedays (like today) I just wish our world didn’t revolve around measuring and worrying about “progress;” I wish that our circumstances weren’t so that I feel like we are constantly looking for it; that the first things our families tell us or say about Sam is “how far she’s come,” that we didn’t know what a damn EI program is; etc. I mean, yes, I’m grateful we have that program to help her, just like I’m grateful we are able to take her to the Johns Hopkins Hypotonia clinic next week; but frankly, I’m just having the kind of a week where I wish we didn’t have a reason to go.

Sometimes I feel like I just want to live in a bubble of happiness with my family of three . . . where milestones, IFSPs, progress reports, etc. didn’t happen. Because when it is just the three of us? I am so able to focus on the cans. On the right now. But then things happen -- like being around other kids near her age -- or younger -- and as much as I don’t want it to, I feel like I’ve been punched in the gut with reality . . . that things like kneeling, pulling to stand, climbing, etc. are EFFORTLESS to other kids, but not mine. Yes, I’m so very thankful that my child is happy (there’s no doubt she is that), safe, and loved (oh so much); that she’s not on a feeding tube, oxygen, etc. We can always find someone “worse off” to put things in our own lives into perspective, but the truth is, its okay to just be pissed that things aren’t easy sometimes too. And that’s where I am. Pissed off and a little sad that it is my kid that is struggling with the things that come so easily to others. Wishing I could make things easier for her. I’d cut off my left or right leg or any other body part to make it so. That’s how I feel today, and I’m going to let myself feel that way. I’m going to let myself be mad that I did EVERYTHING I was supposed to while pregnant . . . and that my child is still “struggling”. To be pissed and throw the “it’s not fair” card that women can snort cocaine or meth or whatever while pregnant, and yet have “typically developing” kiddos. To just stop and wish for one second that our road were easier. That my sweet Sammie B didn’t have weeks filled with therapies.

I’m very very careful as I write this blog to think about how a 15 year-old or 20 year-old Sammie B might somehow interpret it. I would never ever ever want her to feel like I mourned HER; like I somehow wanted to change her. That’s not it. I don’t mourn her. I adore her with every fiber of my being. But today, today, I am mourning a little bit that she has to do PT, OT, etc., to learn to do the things other kids seemingly learn by osmosis. Today, I’m allowing myself to just sit and think that it just f’in stinks that she’s not running around, effortlessly, like her peers and cousins. I want that for her. For her. Not for me. For her. So badly. So very very badly. And that’s how I feel today.

But tomorrow is a new day. A very big new day. The day that Sammie B goes to “school” for the very first time (her EI preschool). And in line with my family's tradition, I'm planning a small celebration for her first day (cake! presents! and of course, a new outfit). My mama always did that for me, and I'm so excited to do it with my girl! (Even if my cake is from a fancy pants bakery and not homemade :o)).

And this funk? It shall pass. Because I have this sweet face to look at and love and smother with kisses. And that always helps a funk to pass more quickly. Now if only this day would end so I could get home to my sweet girl, her sweet smile and give her a ton of hugs.

Wall Standing Rockstar

While I was laying in bed sickie sick yesterday, Sammie B had THREE therapy appointments (I know, what am I whining about, right?! This kid works so stinking hard!). Because of the holiday, we moved appointments around this week so she could still get as much therapy in as possible . . . resulting in a three appointment day. And, despite therapy overload, sweet Sammie B had a rockstar day in therapies! Here's my favorite picture from the day:



Wallstanding! Sammie B can't quite stand by herself yet -- she just doesn't have the balance -- BUT she's now standing with just the wall behind her for support. And as you can tell from the picture, she's not really using the wall to support her weight, its just sort of there for balance. And, look at her knees! Not locked! Weight supported through her entire foot! This is good good posture from my sweet girl! Friends see these pictures and say she's "so close" to walking . . . and sometimes all I see is how far away it still seems (and I feel guilty and hate myself for always being such a negative nelly), but then a picture like this reminds me . . . the progress hasn't stopped. Not at all. Each day (each moment really) we are moving ahead, inchstones at a time. I see this picture and I can tell how FAR she's come. . . which accomodative behaviors she no longer needs to stand (like locked knees) and just what a rockstar she really is.

So, here's to Sammie B and her inchstones. Slow and steady.

And a quote I saw on a friend's facebook status today that I just love love love:

"Toughness is in the soul and spirit, not in muscles."-Alex Karras

I've got a tough little girl, but you already knew that.

Sickie Sick

I hate being sick. I hate admitting defeat, retreating to bed, and missing out on life. It probably sounds silly, but I really really hate being in bed and feeling like "life" is going on without me. I also have a hard time admitting when I need to stop and rest to get better. But this last week has been a bear. I got a cold. It kept getting worse, until I had (have) no voice and an atrocious cough.

B and I had a date night planned Saturday, and though I KNEW I should have cancelled and B kept saying "we can stay home if you want," I didn't. Because I hate admitting defeat. I hate disappointing and I knew B would be disappointed if I cancelled. This was his belated birthday dinner AND our much much loved nanny was going to care for Sam -- its so rare that we have weekend childcare that we love and adore (and someone who I know gets Sam's "essence" as I like to say . . . someone that just "gets" her; knows her signs; her smiles; her laughs; HER), so I went. I probably wasn't much fun. I couldn't talk a lot, but I tried. I really, really tried to rally.

I finally took myself to the doctor Sunday (I can't deal with making appointments, etc. and THOUGHT I'd be back to business and back at work on Monday so I didn't want to wait) and he gave me an antibiotic but said he thought it was a virus so all I could really do was go to bed and sleep it off. And, so now it's Tuesday, and I still feel crappy. I worked from bed yesterday, and plan to today as well. But it stinks.

I don't like handing Sammie B off to our nanny in the morning and going back to bed, hearing them playing downstairs. I don't like sitting in my jammies all day. I just hate feeling like I'm on "pause" while the rest of the world is not. Melodramatic, maybe, but I've always been this way. I'm also very bad at asking for help, and B isn't always the best at just giving it without being asked (this is part of our venus/mars differences, I'm convinced; we've (I've) been working a lot lately on saying what I mean . . . i.e. no subtle hints when I want him to do things and then being mad that he doesn't, but really, just saying, "can you please do x?") and so being sick magnifies that a ton. I really just want someone to say, "go to bed, I've got everything else." And, I want to be better in like 5 seconds flat, but so far, it hasn't happened.

I also have been keeping my fingers crossed Sam doesn't get sick, but she didn't sleep well last night (nor did I as a consequence) so here's to hoping that was just a fluke. Being sick as a mom REALLY sucks because its hard not to think about how crappy you feel and how horrid it will be if your little one catches it and feels just as crappy. I always feel like I CAN'T miss work when I'm sick because chances are, I'll need (and want!) to stay home with sweet girl when she catches whatever I've had. So fingers crossed for a happy, healthy Turkey Day for this little family.

Mischief!

Yesterday, Sammie B discovered a new form of mobility -- the butt scootch. There's a bunch of debate amongst PTs about whether you should encourage or discourage these sorts of non-traditional (i.e. not four-point crawling) forms of mobility, but we are in the "whatever works for her" camp, and well, we'll take it. With huge smiles.

She's been rolling and sort of backward army crawling for awhile, but adding this to her mobility options is pretty cool. Her OT happened to be there when she started doing it and is thrilled. She said this is so good for Sam's confidence, shows that she's motivated to move and motor plan, and will strengthen her arms and body.

The best part is how proud my sweet girl is of herself. The second I suggest doing something (like a diaper change) that she doesn't want to do, she smiles and scootches away. I think she's hilarious.

Last night, I sat in her room and watched her scootch over to her dresser, open the drawer, and take every single thing out. I sent the picture to the grandparents with the caption "mischief," and I think there were a few wet eyes amongst us. See, since Sam has been largely non-mobile, she hasn't had the same opportunities to "get into stuff" that mobile kids have. One of us is almost always right there with her. So, watching her just taking each thing out of her drawer, putting it into her pile, and smiling -- getting into stuff -- made my heart just SOAR.

Of course, being the sweet bug that she is, after she'd made a big mess, she put everything back herself. She truly is magic.

Picture Carnival!

Ellen, over at Love That Max, is hosting a "Picture Carnival" today and asking bloggers to post their favorite picture of their kiddo and explain why it is their favorite. I wanted to participate, but truly, I've agonized over what my favorite picture of Sammie B is . . . there are so many fabulous ones that capture her fabulous fabulous smile and magical personality, so choosing one was quite hard. Do I pick one of her rockstar PT moments that made me so proud? One of her tender loving sweet hugs? One of her cuddled up on me or next to me, sound asleep? One of her watching the animals at Sea World on her birthday completely and totally captivated by them?

So hard to choose . . . but I did, and here it is:



Sam's First Christmas, 2008

I love this picture because I think it was one of the first we captured of Sam and I just gazing lovingly at each other and smiling. And it captures that sort of oogly googly love shared between mama and child. I LOVE this picture. My dreams for her on that day were so so big. My heart was so full of love. My first Christmas as a mama. Her mama. My first time being "Santa." What a day. What a wonderful wonderful day.

And if you look closely, you'll see Sammie B has a HUGE band-aid on her tiny tiny finger. Because that morning, when clipping her nails (a scary task for new mamas), I clipped too far down and it bled. She cried. I cried even more. I felt like such an imperfect mother! But we wrapped her wound in a band-aid and went on with our Christmas.

In looking at this picture and thinking back to this day, I also realize how far we've all come as a family . . . and reflect on our journey since this day. This picture was taken before I even knew what a pedicatric PT did, or what "gross motor delays" really even meant, and certainly before we knew we'd go through an eye surgery, so many specialists appointments, so many weekly therapy appointments, and the worry and wonder we've had.

On the day this picture was taken, we'd known Sammie B for exactly 3 months--we were just rookie parents. Still learning just who our little girl was. What her cries meant. What would make her smile and laugh. It seems so long ago. Because now, we just know her. So very very well. And it feels so fabulous. And, though I probably couldn't have though it possible on that day . . . today my heart is even more full of love for her. My dreams for her are just as big as they were that day. That won't ever change. And I've learned so very much about myself as a parent and person since that day. I've learned that I have the ability to love someone so much it hurts. For my heart to rise and fall with that other little being. To worry so intensely I think my heart will explode. To hear the sound of another little creature's giggle and have my heart just soar with happiness. To have her reach for me, and to feel like I'm literally going to melt into a puddle on the floor. That's what she does to me.

I've also learned that I'm more patient than I ever knew possible, and that my only job as a parent is to do everything possible to enable my little girl to be her best self . . . and that only she can define that "best self" for me. That I can't write her story; only she can, but that I'm so very very lucky to be a part of that story. That magical story.

Her magical smile -- captured on this day, is still just as magical, and my love for her (and hers for me!) is just as oogly googly warm and fuzzy as it was that day.

And, I'm still an imperfect mother (Sam's eaten more chicken nuggets for dinner than I care to admit), but I now know "perfect" mother isn't the goal. I wake up everyday and strive to be the best mother I can be, hoping beyond hope that I while I may never be a perfect mother, that I can be the mother THIS little girl needs, and to enable her to be the best Sammie B she can be.

I love her. Oogly Googly Words Can't Even Describe It Kind of Love Her.

Happy Birthday Maddie!

Had she not been taken from this world way too soon, Madeline Alice Spohr would be three years old today. Please consider donating to Friends of Maddie in her honor. Though our stay in the NICU was a short one (compared to many), it was an experience that changed me forever. I will never forget the feeling of leaving the hospital without Sammie B . . . we are so greatful that she did eventually get to come home to us, and can think of no better cause than supporting families of NICU babies.

For Madeline.

Perspective

My anxiety is at its worst lately. Our trip to Johns Hopkins is now just about a month away, and I find myself calm one minute, and panicking the next. From smiles to heart-pounding fear in moments. Fear that we'll walk away from the trip with an answer we don't want. But, I keep on keepin' on, and somehow, we'll get through it. And sweet Bean does (and will) keep me smiling.

I realize I don't always write about the tiny everyday kind of inchstones. The progress. I tend to come here . . . to my outlet . . . my blog, when I'm feeling tortured and scared and worried, and so the smilestones get left off. I think sometimes I'm afraid I'll jinx myself or jinx us. With delayed kids, "firsts" are so very very exciting, but sometimes, there's weeks or months in b/t the first and a second, so its scary. I worry that each "first" is a fluke, and that I'll somehow jinx myself if I shout it to the world. Silly.

Anyway, a few things that have given me some perspective this week. Friday, we went to Sam's new pre-school (a center-based developmental program she'll attend 3 mornings a week for 3 hours) to meet her new teacher. It went REALLY well. Really well. She warmed up to her teacher within just a short period, and by the time we left, they were quietly playing with a shape sorter together. We are so very excited for her to start this program, and to (hopefully) watch her just flourish. Before the meeting, I was going through the evaluations of the last few months, gathering the paperwork they needed, and I found her first speech evaluation. From May -- just FIVE months ago -- where we reported she had a "few words" (I think we counted five then, being generous) and two signs. TWO. Now? About thirty signs. And, a "few" more words. The words are coming slowly, but they are coming. This week, we've added some verbal approximations for "more," ("muh") "no," ("no") and "me" ("me"). It is hard sometimes to see the progress when we are with her every day, often thinking about (and unfortunately, focusing on) the therapies and how far we have to go, rather than how far we've come, but looking at reports from five months ago? So encouraging.

Gross motor still is her worst area, and the area that we truly are just inching along on. And the damn evaluations won't "advance" her developmental age there unless she's gaining skills that are measured on the evaluation. Like crawling (army crawling doesn't even count), cruising, etc., so those reports make me cry. Every.single.time. And scare me. Like heart-pounding panic scare me. But, when I look at her, I KNOW the progress is there. The inchstone progress.

The PT that will be in her preschool classroom was also at the meeting Friday, and she pointed out so many wonderful things Sam IS doing, and was encouraging about the rest too . . . we really are excited for people with a fresh perspective to be working with Sam, trying new things, and working collaboratively with us and her other therapists.

No doubt, the progress IS there. She now stands for longer than she previously would, and often with less support than ever before. So slowly slowly, we ARE moving forward, even if on some days it feels like we are at a standstill. Even if those evaluations don't measure the inchstones as "progress." (And this is where I remind myself of one of my promises to Sammie B -- to look at her, not the evaluations. To look at what SHE'S doing.).

Today, I was flipping through the pictures on my blackberry from the last week (I'm sharing the highlights below), and I was just awe struck by my sweet girl. The things she's doing today that she couldn't have a couple months ago. And then? Then I'm sure there's progress. So, here's to the inchstones I have to periodically remind myself of, and here's to making it through the next month before our appointment at Hopkins, and the wait thereafter for any test results, and here's to making it through ALL of that with optimism (something that doesn't come easily to me), perspective, and some smiles along the way.

This little girl amazes me. Every single day. Now, if only I can do a little better at doing what my sweet friend H has reminded me to do . . . living in the right now. Not the yesterdays or the tomorrows. The right now. The RIGHT NOW that makes me smile so much.







(And let me just say, in that standing in the high chair picture, we put her like that to clean her up, and B was standing RIGHT in front of her; no need to worry! But we have been standing her like that and giving her rides around the house, which she enjoys immensely!)

Rockstar!

Sammie B was a rockstar for Halloween, as was I. It was a super fun evening. B didn't dress up, so I just said he was our body guard. We'd had a busy week, and wanted to keep things low-key so went to a little local "parade" for little kids . . . we were the parade. Basically all lined up and walked around with our kiddos in costumes and stopped at a few local businesses for candy. We were gone from our house less than an hour. Perfect for the tiny kids and the parents who don't want tons of candy. It was funny . . . I think Sam "got" the whole costume thing. When we were at home, she kept taking off her Madonna-esque lace headband (as I expected) but once we got to the parade and she saw everyone else in costume, she left it on. And, carried her microphone. She was a rockstar, just like she is every other day of the year.

And, just for fun, flashbacks from the past two Halloweens with our sweet Sammie B!!!