This post will be a doozy. A whole lot of thoughts and worries and wondering in my head and heart these days, and it is time to just sit and pour them out. As I start to type, I already feel the tears welling up in my eyes, so that probably means this (not-so-little) little blog post is long overdue.
We have hit a rough spot with our little lady. Our usually sunny, laid back little lady has been . . . a bit contrarian lately. Much whining, more crying than normal, and a whole lot of “no’s.” She just seems so frustrated. Her PT has noticed. We have noticed. I’ve gone around and around and around in my head trying to put my finger on what “it” is. What “it” is that’s bothering my girl, and well, I think there’s so much going on, that I’d need multiple fingers to put on “it,” and oh how I wish I could just “fix” it all for her. To get inside her little head and hear her inner thoughts, to wrap myself around her heart and just somehow make her struggle less. I’d give anything. Absolutely anything.
In December, we fired our nanny of over three years. Sam’s best friend. It all went down in an ugly, ugly, here-today-gone-tomorrow kind of way (it had to be and to protect everyone’s dignity involved, though I’m not sure said nanny deserves that favor from me, I’ll skip the details). She left on a Thursday afternoon, and that was that. I worked from home for a month while we looked for a replacement, and well, it was a hard month. For the first few weeks, Sammie B was just digging having me at home, but then, as time went on, she missed her friend, particularly when school started back after the holiday (remember that our nanny goes to school with Sammie B as her one:one aide). Then she was just sad. One morning before school, she asked me if her nanny was coming to school and when I said “no, love, remember we talked about this?,” she said, “well can you stay? It’s a little bit hard for me.” And my heart crumbled. We found a replacement in early January who just did not work out, so then we found another. . . so Sam has been through a lot of transitioning. It has not been easy. And while the person we found is great with Sammie at school and therapies, she’s not as active or engaging as we might like, and, well, I think Sam is struggling. Struggling with the transition, struggling to learn to trust this new person, struggling with missing her old person. And as a result, so am I. This job of mine is not easy. And truthfully, I haven’t come to work and truly had peace of mind that my girl was happy and in the best hands -- the hands of someone who loved her -- since December 12. That’s a long time of worrying and wondering. But we continue to work at this, to talk to the nanny, to try to make it right. To talk to Sammie B about her days, to talk to her about how her nanny helps her, etc. And, just to figure it all out. This short paragraph does not even begin to describe the feelings behind all of this stuff but it’s the best I can do while not giving too many details. I lost a friend in all of this, my girl lost her best friend, and well . . . it just plain sucked. People are disappointing sometimes. Hugely disappointing.
We’ve also noticed for awhile that Sammie B seems to be having a harder than usual time with her eyes. She had strabismus surgery as a baby because her eyes were going in (esotropia) and we always knew with that that there was a risk of being overcorrected or otherwise needing a repeat surgery. Well, so it goes. She needs it. We suspected it for awhile -- her eyes go out a little bit and you can see her making a concerted effort to bring them back in, but we tweaked her prescription and hoped that would do the trick, and it didn’t. So, we go back in for surgery. That makes me sad. As I type those words -- “a concerted effort to bring her eyes back in . . .” I'm acutely aware that this is something we all take so, so for granted, and yet she has to make a “concerted effort” to do. That plain sucks too.
As I said in a recent post, Sammie B has just taken to her walker and is doing really well in it in the house and for short distances. And that makes our hearts so, so happy. But lately, even though her Kidwalk is an incredible source of freedom, it has also been -- at times -- a source of frustration too. She gets stuck sometimes turning corners, or drops something and can’t bend down to pick it up, or can’t get quite close enough to something she wants, and she gets frustrated. Crying, upset, frustrated. And, it so, so hurts my heart. I watch her watch her sister and try to go after her, and she gets frustrated when she can’t go fast enough. I hear the absolute heartbreak in her voice when her sister takes something from her and she can’t chase to get it back. I hear her sad (and angry) little voice say “NO MIA, YOU CANNOT HAVE THAT!” as Mia so easily takes something from her sister’s hands and walks away . . . (This, will, no doubt, be better in time as Mia matures and understands her sister better). I hear an almost desperation in her voice when she wants us to help her get into the Kidwalk and we take too long. “I want my walker right now!” I struggle between knowing we have to tell her not to be too bossy, too demanding, and realize that . . . that walker is like her legs.
I think all of this has contributed to a very contrarian little girl who is also just fed up with therapies. And frankly, I cannot blame her. Since she was six months old, she’s been in physical therapy, then occupational therapy was added, then speech therapy. Having an adult tell her how to play. Making her work to play. (Imagine coloring a picture and having to walk ten feet every time you want a new marker so that play is also "work.") And so, now, at four, she’s just asserting herself and flat out refusing to cooperate in PT. It is tough because we know she needs it. But at the same time, it may be time for a (short) break. Which would be an easier decision to make if I knew she was getting enough active play with her nanny, but I don’t. We know that she has not plateaued physically -- we are seeing so much more movement than ever before at home -- but it may be that she’s plateaued a little with her current therapist. She’s literally played with every stinking toy in that clinic now, and well, as her therapist said, “I’m just having a really hard time tricking her into working . . . . “ Sammie B is not easily tricked, we know that. And, ever since the beginning, one therapist after another has told us “she’s too smart for my usual tricks -- they don’t work with her!” I honestly don’t know what direction to go on this one, but we are thinking and ruminating and trying to figure it out. We drive an hour each way for PT, though, and I have always been able to justify that (since we switched to that clinic almost two years ago) because they are so amazing there, and she was getting so much out of it. Right now, though, she’s getting less and less out of it (by her own doing!) so maybe it is time to rethink it all. To recognize a new “season” in our lives and look for a change. I trust those therapists implicitly so this one is hard for me.
On top of all of this, I’m also working more than I have in a very, very long time. It is terrible timing because all I really want to do is stick by my girl’s side and help her through this time. And, I can’t. Because of the childcare situation, I worked from home all of December so my hours were low. I’m (hopefully) up for partner this fall, and well, we need my income in the most desperate way. So I work, work and try to balance it all. I try (and somewhat succeed) at letting the “overtime” so to speak only spill into my sleeping time and still stay afloat with the girls. Still being “mama," but I only succeed sometimes, and the work calls and emails invariably spill over into my “mama” and family time and so in the car to and from appointments on my Wednesdays “off,” I do conference calls and let Sammie B watch movies in the van, and I feel so, so guilty, and I long to be able to just be present in the moment, wherever I am. . . present at work and not worrying about the nanny situation, present at home and not worrying about work. Being "present" has turned out to be something so very elusive.
And, in the midst of all of this, we are in a tough spot with school for next year. Sammie B’s birthday is Sept. 24. A mere seven days before the kindergarten cutoff for our district, which means, come IEP time, they are going to push for us to put her in kindergarten next year, before she’s even five. If we were not in the public pre-school program, it wouldn’t matter -- we’d have the choice of keeping her in preschool another year, but because we utilize the special education services (services that just are not available in a private preschool setting) we may not have that option. We are sort of beside ourselves trying to figure out what to do. Sammie B tests ahead of age cognitively in a one:one setting (e.g., with a developmental pediatrician) but that is not translating into the school environment, even now, in a preschool class of just 12 kids, she gets overwhelmed (we think) and just sort of shuts down. She’s quiet, does not participate that much and hardly talks. At home, she’s counting to 30 and recognizing letters, asking questions questions questions, and spelling her name out loud, but at school. . . . she will not do any of those things on demand. We know she’s paying attention and taking it all in, because she demonstrates what she’s learned to us at home, but it is not showing at school, and we don’t know what to do about it. The special education-only placements seem inappropriate, yet, we can’t imagine putting her in a kindergarten classroom with 25+ kids who are all older and faster and bigger than her. Just can’t fathom it. We could push for another year of pre-school, but she's now done that curriculum two years in a row, so that may not be the best option either (though we think that year could benefit her in terms of social and emotional development). Not knowing what to do, we have entered the “lottery” for some amazing public transitional kindergarten programs (one of which I toured and literally cried during the tour because I knew it would be so perfect), and we pray and keep our fingers crossed and hope beyond hope that it all works out. That we “win” this lottery. That one of the "one in fifty six" chances of getting in is OURS. The thing is, I’m an incredible advocate (and with B by my side, even a pleasant one most of the time). I feel like if there was a perfect program, I could fight and get her in . . . but when there is no perfect program, or even a “great” program that seems like a fit . . . when there just does not seem to be a fit at all, I don’t even know what I want to advocate for and I just feel lost. Lost. So, back to waiting and hoping. On a silly lottery that is so, so out of our control.
I have said before that I wish, wish, wish I had the power to make things easier for Sammie B. I’d give up a limb or organ to make it so. But I can’t. And honestly, that part is heartbreaking. The part where I watch my girl work so stinking hard to do what comes so easily to her peers -- that part, we have dealt with for awhile, but this new thing . . . watching as she realizes and processes how hard things are for her -- watching as she watches her little sister do those same things with ease and she gets frustrated because she just wants things to come easily to her -- seeing how her frustration is mounting -- this is what is just tearing me to pieces.
We can’t make things “easy,” we can’t make it so that the “easy” to others is “easy” to her. So instead, we think, we ruminate, we research, and we lean on the experts in our lives to think of how we can at least make them easier for her, We talk to her about how even though some things are hard, we don’t give up and sometimes, we have to just find different ways of doing them.
And, as is sort of typical of my thinking process and how things work in this journey for me, as I research things and think through things quietly, often staying up late to read about a new therapist or therapy or email our amazing physicians to get their thoughts or schedule an appointment with her orthopedist to check in and get his thoughts too . . . It is always after a long period of doing those things that it is as if my heart just speaks to me when it is the right “season” for change. And, then, I go to B with all the ideas that have been swimming in my head, we research some more, we keep talking to the experts in our lives and Sammie B’s life, we tweak therapies or therapists, we freshen things up and try new things and we keep on, keeping on. You know what? It is exhausting. But she is so, so worth it. So worth it.
Some of the changes are little, others bigger, but we do it - we keep on keeping on. We tweak therapies, schedules, equipment, all to find the right balance for this “season” in her life and ours.
As a small change, I went to Target over the weekend and stocked up on cheap princess trinkets for a treasure chest. And, this morning, we had a heart to heart where I told her that as long as she worked hard in PT, she’d get a surprise after, and so, we’ll see. We’d done that for a long time right around the time she turned three, but she really had gotten to where she just worked and had fun with her therapists, and I’d spent what felt like 8 trillion dollars on little trinkets that were strewn about our house and car and in every crack and crevice of our lives, and so we backed off. But, ‘tis the season again for bribery. Frankly, the little lady works so hard that she deserves a million little trinkets.
We are also trying to be diligent again in having some alone time with each girl every weekend, where either me or B has Mia and the other has Sammie and we just spent some one:one time with them. Where Sammie B can play with one of her games with one of us without Mia swiping pieces, where we can sit and read with Mia or go out for a walk and let her wonder about . . . . that too has fallen by the wayside as I have had to work weekends (particularly in December when I was not getting much work done during the week days) and while we were getting the house ready to sell. We know they each need and deserve that alone time so, so much. Sammie B and I kicked off this weekend with mama-Sammie time (pedicures!) while B and Mia went out to breakfast and for a walk.
We also tried our first CME (Cuevas Medek Exercises) therapy session. This is one of the things I have read about for years, but listened to our original PT (mistake) and never tried (remember, she’s the one that was adamantly opposed to gait trainers too). But lately, I came back around to it in my head when I learned of a clinic so close to our house with CME practitioners. Another mom from my delayed darlings board started doing this therapy with her child and said great things, a friend from Sam’s early intervention program was doing it, we went to see a session, and I was blown away. So, we tried it. And, I liked it. It is hard. I could tell that Sammie B was working so, so hard, and I was blown away by her. And what she was able to do with the facilitation of the CME therapist. She’s a kid that generally does well when she knows exactly what is expected of her in advance, and we’d talked about how she’d do a few of each exercise and we told her how many she had left each time, and her determination was unbreakable until just at the very end when she was ready to be done (and earn her new princess dress we’d bought earlier that morning!)
Unfortunately, B had a work emergency and could not make it to that appointment, but we have another one scheduled for later this month, and if all goes as it did last week, we will likely be doing a CME intensive session this summer (with some additional other types of therapies thrown into the intensive). It makes me nervous -- CME is not a therapy that can really be done in a way that makes it particularly fun for the kiddo -- it really is like exercising (and the therapists say they will keep going even if the child is crying and not cooperating, which is not how we roll, and something I likely won’t compromise on), but I’m cautiously optimistic that we’d be able to push through with the help of an iPad and Dora and some breaks in between the work. This clinic is also less than five miles from our house, so that's also a bonus.
The more we learn about Sammie B as we go through this journey -- that her challenge is primarily her balance, and is cerebellar in origin, and the more we learn about what that means -- the more these other therapies make sense to me. We can do traditional PT until we are all blue in the face, but that is working on strength and showing Sammie how to move her body, and she knows and understands what we want her to do. But her brain isn’t wired to do it. . . . not in the way that a typically-developing brain is. So, with that understanding, the more we are convinced that we have to try some of these other therapies (like CME and a few others we are researching and spinning our wheels over) in conjunction with some traditional PT as well. . . because we know --science has shown -- that the brain is plastic. That it can be “rewired.” The two best neurologists we have seen -- both the one specializing in movement and cerebellar disorders and the neuro-ophthamologist whose had my trust since the beginning of this journey -- keep emphasizing this to us -- the idea of neuroplasticity. Science has shown that kids can be missing their cerebellums completely and that the other parts of their brain can be “rewired” to compensate. It’s all so fascinating and promising. As I told the new CME therapist, though, I am not looking for a magic solution. I will not put my child through anything that remotely feels like boot camp in hopes of her walking. Yes, the world is more convenient for walkers, and I’d LOVE for her to know that convenience and ease. . . but at the same time, my goal here -- our goal -- is just to help her be her best self, whatever her ultimate form of mobility is. With that back drop, we move forward in trying new things, mixing new things in with our more traditional PT, and just keep plugging on. Cautiously and optimistically.
We also have an assessment coming up in April for a power chair. To see if Sammie B could drive one. (Yes, a four-year-old little bee, driving, and I have learned these things are NOT easy to maneuver, so it may be too soon, but we shall try). We have tossed this idea around with her PTs for a long time. We know she can *sort of* drive because she does pretty darn well in her little power car as long as we are giving a little bit of direction (you know like, “don’t drive into the wall!” . . . though she does, but only because she thinks that’s hilarious . . . ). We spent the last year focusing on progress in the gait trainer, and she's made it (and continues to). She has made much, much progress in her ability to move around in our house. She’s started scooting all over, getting herself safely from the couch to the floor to scoot, etc., which is incredible. We know that her ability to do all of those things is only going to continue to improve. But right now right where we are, those two forms of mobility are simply not practical ways for her to move about in the community -- she still goes just short distances in her gait trainer -- and we don’t want every ounce of her energy being spent getting from point A to point B. I think of a day at Disneyland, and I *know* that a gait trainer (or even walker) would not be practical in that sea of thousands of people. So, for the last year, even though we have made tremendous gains in the gait trainer and at-home mobility, we still push (in her stroller), pull (in our awesome wagon) and carry her out in the community.
A very long time ago, I read a blog post by a mom about her little boy getting a wheelchair. I honestly don’t remember where it was or I’d link it for you. But, one of the commenters, an adult in a wheelchair, said, “when a stroller is no longer age-appropriate, he needs a wheelchair, so his peers see him as just that . . . a peer.” That really stuck with me. And, so I have spent the last year sort of thinking and processing and ruminating . . . through the logistical (selling our house with its four flights of stairs, converting our van, which you would NOT believe the cost of -- we still have to figure that one out -- an expense for which there is no help -- one that isn't covered by insurance, even though it is, no doubt, a medial one) as well as the emotional.
I am determined that even though all of *this*is hard for me, I never, ever, ever want her to feel like I attach anything but positive to her chair - if she winds up with one. If that winds up being her primary form of mobility. It does not matter. Yes, I know this world is built for walkers. I am reminded of it every time I leave the house and struggle to hold a door open as I also push my stroller or wagon, or every time we go to look at a house for rent that was advertised as a “single-level” but has a step down or up somewhere in the interior . . . reminded of it. And we want our girl to know “easy.” So, yes, walking would be nice. Convenient. For her. But if that’s not to be, that’s not to be. Our goal for her is for her to be her very best self. To reveal that very best self to the world -- to reveal her destiny -- as only she can.
Anyway, as all of this was ruminating in my head, as B and I talked about selling the house, put the plans into action, etc. there was a day that my heart just spoke to me . . . and I knew . . . it was time.
During that month of working from home when we were without childcare, I took Sammie B to school and picked her up every day. Pulled her into the classroom in her wagon, helped her walk over to her seat, and then left the wagon outside for pick-up time. At pick-up, all the kids sit on a bench, and the teacher/assistant walks each, one by one, out to the gate to their parent or whoever is picking them up. Sammie B was sitting on the bench and spotted me and kept yelling, “MY MOMMY IS HERE!” but they brought all the mobile kids before loading her into her wagon and bringing her to me. I knew in that instant, that if my girl had a power chair, she’d have zipped over to me in an instant. And, I knew. She needed that. For her.
I realize that a power chair will be a STEEP STEEP learning curve. We may go for the assessment and them tell us “not yet.” But we have to give her this chance, whether now or later. (And, if she does not yet have the maturity required for the power chair, we’ll likely get her a sport chair/manual chair because we know from how she uses the Kidwalk that she could propel that with her arms for short distances). We have to give her this chance. At independent mobility.
This does not mean we give up on other forms of mobility. At continuing to progress with the gait trainer. At trying walkers out down the road. At hoping -- for her -- that one day she is able to walk independently. But it does mean that, right now, we want to give Sammie B every chance we can at independent mobility. At lessening her frustration, at interacting with her peers in an age-appropriate way.
Now, I will be honest. On the day that I finally said to her PT, “let’s start the (long) process of getting a power chair,” after the appointment, I sat with Sammie B to have a snack before heading to our car, and I put my big sunglasses on so that she would not see the tears forming in my eyes (just as they are right now) while I processed it all. I just wish things were easier. For her.
But as I sat there, texting my sweet friend H, who is almost always that friend, Sammie B had managed to take both shoes and both socks off, and put one sock on her hand. I had not noticed until she said, “can you please put my other sock on my left hand?” Stopped in my tracks, I realized . . . how did she know left and right? That little girl is magic. And, even though my heart is hurting and my mind is literally reeling from everything that is going on, she heals me, in her most magical way, every single day.
And that night, as I checked into my twitter account, which I so rarely do these days, I saw the following quote, retweeted by some CP organization I follow:
“I am not trapped in a wheelchair, I am liberated by it.”
[Source unknown, but whoever you are, I am so, so grateful for those words.]
We cannot give her “easy,” but what we can do is teach her, by example . . . . to help her understand her body, to help her understand and process the differences and her challenges. To hopefully hopefully start instilling in her an inner voice of love and pride. To make sure we give her every shot at independence, no matter what equipment or adaptations that requires. And, just to love her to bits while she processes it all.
Here’s to you, Sammie B. Know this, my girl, you amaze me and inspire me every single day. Nothing about you, nothing, disappoints me. If you need some wheels to get around, so be it my girl. You will rock those wheels. Just like you have rocked everything else you touch. I am so, so proud of you and I love you more than you could ever know. Just as you are. Perfectly Sammie B. I am so, so lucky to be your mama. You are determination, grace and perseverance defined. You are mine. And for that, I count my blessings every single day.
