Friday, March 26, 2010

More moving and grooving

With a little bit of help, Hannah is continuing to do some great things. B was able to install some bars in our bathroom and now she can get inside, on the stool, and get herself to the sink to wash her hands or lower herself to the potty without help (just some spotting to make sure she doesn't hurt herself!) Check her out in the video below-and a note that the spots on the toilet are just where the potty seat has banged into it-our bathroom is really not THAT dirty!!!

The second clip is of Hannah coming up the ramp from our driveway to our back door doing a side step. Usually we leave her walker at the bottom of the ramp and then get her out of the car and place her in the walker and up she goes. Every once in awhile, she decides she would rather leave the walker behind and so she walks up sideways on her own. This is SUPER because it really works a muscle group that I can't remember the name of right now, but that is pretty hard to work unless you do this kind of motion (same one that you do when you make snow angels, and a muscle group that's notoriously tight in kids with CP). And what's more super is that when she goes up this way, she has to lead with her left leg which is the weaker/tighter of the two. LOVE when she gets those great PT exercises in all by her own volition! That's what it's all about...

Monday, March 15, 2010


I think post-trauma and grief are like this: you go along feeling fine and then all of a sudden, something hits you like a ton of bricks and you could, if you let yourself, go back to the hard, sad, overwhelming place that you were in when you first experienced a loss. It's hard to know what will set it off, but it's like your grief and trauma have these land mines scattered around your life and sometimes you unknowingly step on one and set it off.

The two triggers that got set off most recently:

The girls' (and especially Hannah's) medical files: I usually avoid reading through them unless I need to. Recently I had to go digging in Hannah's because we are seeking a consult for selective dorsal rhizotomy (more on that another time!). All I had to do was look at the copies of her quick brain MRI and I was immediately launched back to that day in the NICU when they told us about her PVL (brain injury).

Any meeting with a new therapist/medical professional: We are looking into getting a new PT (more on that, too, some other time!) so we had a consult with someone last week. Despite the fact that this PT was a very warm, kind, and seemingly knowledgeable person, I felt naked as I introduced her to Hannah, anticipating her judgment like we were getting a CP diagnosis all over again. I could barely hear her positive comments about Hannah and focused instead on what she said about "lack of protective reflexes" and "may not stand independently."

I can bounce back pretty quickly from these triggers but it still surprises me, the strength of their power.

sometimes all you can do is breathe

I took a Hatha yoga class with a good friend last weekend. I haven't done yoga in a looong time. I'm still sore! I realized how out of wack my body is from my pregnancy with Sam. I was proud of myself for not trying to push through all the poses and be comfortable with taking the easiest option for many of them. And it was good to try to relax although it was hard for me to turn my brain off (probably shouldn't have had that second cup of coffee right before class!)

One thing the instructor said that stuck with me. She was reminding us to stay present, focus on our own experience, and breathe. She extrapolated from yoga out to the rest of our lives and the various things that might cause us anxiety and stress. She talked about how in the midst of those moments, sometimes the most important, and only, thing we can do for ourselves is breathe.

This really resonated with me. I've had those times when I am so overwhelmed by one thing or another and I am barely breathing. It's a shallow, chesty breathe that just barely sustains me but does not energize me in any way, and might even make me more anxious or stressed. This instructor reminded me of the power of a deep breath, even when it's the only thing you can do.

So here I go...gulp...BREATHE.

Tuesday, March 9, 2010

Moving and grooving

Hannah has been working so hard on this for such a long time. I'm so proud of her!

Wednesday, March 3, 2010


Our guy will be 6 months old in 2 days; where has the time gone?! He is such a fun little person to have around. He has a really great demeanor; he's very happy and easygoing and can entertain himself well. He LOVES his big sisters and is happiest when he's near them and watching them play. He's sitting up on his own now, rolling all over the place, and making tons of baby cooing sounds. He has a tooth, drools constantly and has been eating solids since he was 4 months old because he is such a big strapping young man! (I'm guessing around 19lbs but we'll know for sure in two weeks when he has his next well-baby appointment).

Anyway, I spend so much time on this blog talking about the girls, and mostly Hannah, but Sam deserves a post of his own because he is very much a part of our happy family of 5.

seeking guidance

I just got an appointment for us to see a child psychologist. Having a degree in counseling myself, I feel equipped in some basic ways to help myself and our family work through our thoughts and feelings around Hannah's CP, but as she becomes more aware (and Isabelle, too), I think we could use a consult and some more tips/tricks. Especially because it's always easier to counsel someone other than yourself, and things are also different when it's your own kid. And, we are considering some surgical options in the next year or so, which is going to up the ante in terms of how Hannah's CP affects all of our lives.

I'm looking forward to our appointment: first B and I will go, then hopefully the girls will have a session as well. But I'm also anxious: every time I find myself in a "therapeutic space" I do a lot of crying. It's like I know I can let my guard down and I just can't hold back the tears. I know there's nothing wrong with that, but I am a bit afraid to let it all come out, as it's been awhile since I've done any down and dirty grieving and it takes a lot of energy. But I guess if it has to come out, it will, and then hopefully there will still be time after the tears stop to get some good information, suggestions and ideas.

My biggest concern is finding a way to help Hannah accept her disability without having it crush her self-esteem. I remember having pretty wounded self-esteem myself as a teenager, and I don't have a disability. I envision tough times ahead for our girl and I want to do all I can to ensure she makes it through those challenging years with a strong sense of self and some skills with which she can handle the insensitive people and situations she will surely encounter.

My second biggest concern is how all of this affects Isabelle. There is no doubt that Hannah gets more attention and there's not much we can do about that. I can also see that this extra attention does not go unnoticed by Isabelle. I would love to find a way to ensure that despite this, Isabelle still feels loved and listened to and cared for in all of the important ways, and does not resent Hannah too much.

My third and most recently emerging concern is how Hannah will react, if at all, to Sam's increased mobility. He is sitting up, poised to crawl and will be walking before we know it, all with the ease and smoothness of a typically developing child. I wonder at what point Hannah will see this happening and realize he can do things she can't do, even though he's much younger than her. I want her to know that she will always be the big sister who can teach Sam many things, even if he can move his body more easily than her.

The poor psychologist we have our appointment with; I think I'm handing her a pretty tall order: ensure the total psychological well-being of all of my kids, please. With a side of fun and happiness sprinkled in.