Finding the right groove

Hannah has said some pretty amazing things lately. Yesterday at breakfast: "Even though I have a disability, I'm still happy." She's so matter-of-fact about it and meanwhile, my heart is being squeezed so tight I think it might burst. She must be going through an almost-five-years-old phase of realizing differences in other people and herself, and trying to make sense of it but without all the added baggage of that will probably be heaped on when she's a little older (like right now, it's all about noting things but not internalizing them, what a great space to live in, huh?!)

Another one of Hannah's gems: "It's okay if people have a disability. It's not sad, or bad, it just means they need a little extra help."

I'm so glad she is expressing what we try to tell her all the time: that she is different and some things are hard, and that there are other people who are also different and have things that are hard about them. But that there are a lot of things she can do that aren't hard for her, and we all have things that are hard and easy. And that's life.

It's tempting sometimes to take the "you can still be and do anything you want" approach, but I'm very sensitive to the potential perils this can bring. I've read a lot about people with disabilities sometimes feeling like they have to be "super amazing", overcoming all kinds of obstacles to do things people didn't think they could do, etc etc and that some folks just wanted to be an average Joe who didn't WANT to feel like they had to live up to these big expectations.

I also don't want to sweep Hannah's difficulties under the rug so they are not acknowledged. I definitely don't want to be a downer and focus on what Hannah can't do, and we are constantly offering up opportunities for Hannah to try out all kinds of things But I feel like it's really important for her to know that if she decides some things are just too hard to do, that's totally fine and also, to acknowledge that it SUCKS that some things are really hard for her to do.

I do hope that in our quest to introduce Hannah to a world of opportunities, we find something (or things, plural) that she can do with little or no effort, things that are just where her natural talents lie. Because while it's awesome for all of us to stretch ourselves and do things that take hard work, it's also awesome to feel naturally competent and confident in something that we just seem to do effortlessly.

In this process of helping Hannah to find her groove, I'm grieving some for the things that we most likely will NOT do as a family, or do with the ease and regularity I would have liked, if we didn't have a kid with a physical disability. When I fantasized about having kids, I pictured introducing all of my favorite things to them: canoe camping in remote wilderness spots, snowboarding, going on big hikes...things that we could adapt in some fashion so that Hannah could participate, but that will not be like what B and I used to enjoy doing before we had kids.

Maybe all parents have to do this to some extent: you help your kid to find their rhythm in the world, and are super excited when it matches your own lifestyle, preferences, etc. and are maybe not totally psyched, and maybe even a little bummed out, when it is the polar opposite of how you would like them to live their lives.

But through this process I think you also get introduced to new rhythms, new experiences, new ways of moving through the world, and that's pretty cool too.

So that's what I'll focus on, because in the slightly amended words of Hannah, the wise sage, "My kid has a disability, but I'm still happy."

Sum sum summertime

I'm long overdue on a post. Ever since school ended for the girls and the summer travel season kicked off, things have been super busy around here! Sam as you can see in the top photo is growing like a weed. He's only about 3 1/2 lbs lighter than Hannah at this point: he's a big guy! He's also a very happy, smiley guy who is now commando crawling all over the place, pulling up, saying "Uh, oh" and "Dada" and "Mama". He eats anything and everything and has an appetite that rivals the girls at their hungriest. We're having a lot of fun with him although now we're back in baby proofing mode which is a little tricky when you have older kids with tons of small chokable items everywhere. But anyway, that's a bit about Sam.

The picture of the girls was taken just before they left for one week at Grammie and Papa's house. This was the longest I've ever been away from them. I had a conference for work so my parents, who are amazing grandparents, drove all the way up to get them and take them back home for a week. Everyone had a great time and the girls did really well being away from us. I think my parents needed a spa vacation after but otherwise all was well! I definitely had a hard time saying goodbye to them; they've become such big girls, but seeing them drive off that morning, I felt like my babies were leaving.

But big girls they are, in so many ways. It really became evident how much they've changed and grown when we had their end-of-year school conference. First of all, I absolutely love their teacher and feel so grateful that the girls have had her to help shepherd them through their first school experience. It was really hard for us to contemplate the school process: where to send them, what to expect, how would they (and especially Hannah) make out. All of my fears were unfounded and in fact, my expectations totally exceeded. It's so clear that the girls felt safe, secure, comfortable and also challenged, engaged and encouraged to learn and grow at school.

And then there was the added bonus of the many physical changes and improvements they EACH made. Our former PT had told us that we would see great strides once Hannah went to school because peer motivation can be so strong. She was right on the money. Looking at the IEP goals written last winter, Hannah met almost all of them and even exceeded expectations in some areas. Some of the changes we've seen at school and at home:

-Hannah can now get on/off the potty, wash her own hands, get on/off a chair, climb up one of the stand alone slides on the playground, get across the playground grass, pea stone and even snow in her walker, eat her snack in a reasonable amount of time and then keep up with her peers on the long walk down the hallway to the door for recess, draw a picture of a person with recognizable features and other details, put on most of her clothing with minimal assistance, take off most of her clothes with minimal assistance, brush her own teeth...the list goes on and on. It's really been incredible to see how she has progressed over the past year. Of course, having the right set up in the classroom bathroom, at the sink, at the play tables...this has all given her so much more independence than she would have otherwise and we've been working hard to create these same adaptations at home as well.

And Isabelle has changed and grown in so many ways as well. She was really pushed, I think, by her able-bodied peers to catch up in some of the gross motor skills she was lagging in, as her play with Hannah didn't expose her to that. She wears orthotics because she's a toe-walker and she has always been a bit clumsy. Heading to school, she wasn't able to jump with both feet off the ground, she fell a lot when walking and had kind of an immature gait when running, she wasn't very confident climbing on playground structures, etc. She was also kind of shy and quiet and of the two girls, she was the one who cried for a few days at the start of school, not wanting me to leave her.

The changes we've seen in Isabelle:

-She can now climb, jump and run with the best of them
-She is completely independent with things like going to the bathroom, getting dressed/undressed, brushing teeth.
-She has become very social and when I would pick them up at school toward the end of the year, I often found Isabelle yelling to friends to "come play with me!" She made friends other than Hannah and separating from me got much easier.
-She is also able to write all of the letters of the alphabet, can sight read some words, and creates very elaborate and detailed drawings.

I'm so proud of all my girls have accomplished this past year, and I'm really enjoying this new phase of parenting as I watch these changes from a little more distance than when they were home with me all of the time. Now in fact, we're at the stage where being home all the time is not a good thing at all! They need to be kept busy with lots of activities. Hannah asks me every morning, "Where are we going today?" Let no moss grow under their feet!

The challenge for me this summer is to figure out how to meet their needs while also keeping Sam on his schedule. I also need to figure out how to navigate different places with the 3 of them, given both Hannah and Sam's mobility limitations. I did manage to take them all strawberry picking which I was pretty proud of. But there are a lot of outings that would just be too hard for me right now. I remember this phase with the girls, which seemed so long, where I did not venture that far with them on my own because Hannah couldn't sit well in many places and not all places were easy with a double stroller and they were still on a nap schedule. Then we got to that sweet spot where I felt like I could go almost anywhere with the two of them which was so liberating. Now we're back to being a little more homebound because of the little guy. I know this phase will pass quickly but it's definitely my challenge for the summer!

Sedation Sally

I forgot to mention that after Hannah's visit to the Comfort Zone, we came home with two doll "patients" and an IV kit (minus the sharp!) that the child life specialist gave us. Isabelle, our resident doctor and nurturer of all things big and small, immediately decorated her doll (who I've dubbed Sedation Sally) and then gave it a full medical work up as you can see in the photo. Hannah on the other hand was more interested in practicing her cutting skills on the gauze and didn't do any kind of "pretend play" doctoring with her patient. I mentioned this to my dad who said, "Well, why would she? She has to endure the real thing." Hmmm, good point.

March of Dimes: Our 5th year walking

We had a great time walking this year! We weren't sure we were going to make it, as the girls both came down with a nasty stomach bug just two days before and I was waiting with bated breath to see if it tore through the rest of the family. Thankfully by the morning of the walk, we were all fine (albeit a little tired) and the weather was cooperating as well. This was also touch-and-go, as we got a freak late April snowstorm just a few days prior, dumping over 6" of snow on our green grass and budding trees and flowers. But the sun was shining, the temps were close to 70 and everyone was healthy.

Thanks to the generosity of our family and friends, I raised over $1800! Next year I'll have to organize a team so we can have even more people fundraising (and walking) along with us.

If you were one of my donors, THANK YOU for your support. This cause is close to my heart and it means a lot to know you helped contribute to the important work of the March of Dimes.

Happy spring!

Sedation update

Just a quick note to say thanks to those who sent along their support and to let you know that the sedation went really well, Hannah was a total champ. She was fascinated by the IV insertion and watched the whole thing (thank God for Emla cream so she didn't feel any pain). She definitely had moments of being a little anxious as there were so many people coming in and out of her little "pod"--anesthesia resident, nurses, child life specialist and when Dr. B came to test her range of motion before the procedure she kind of freaked out, afraid he was about to do the shots. But otherwise she did fine. When she woke up from her little propyphol (sp?) nap, she said, "Why didn't Dr. B do the shots?" When she realized it had already happened while she was asleep, I think she was pretty relieved.

It was a little more difficult for me...just being in a very hospital-like setting, seeing the heartrate/sat monitors again, seeing one of our former NICU nurses who was our nurse at the Comfort Zone, watching Hannah "go under"; it was definitely a bit traumatic and also made me think more about what it will be like if/when Hannah has surgery, which is a very real possibility.

But overall I think it was worth all of that so that Hannah didn't have to experience the pain of the multiple shots.

Damned if you do...

So tomorrow we try our first round of botax under sedation. We did 4 rounds without anything and Hannah got progressively more anxious before each time. The last time she was in tears just leaving the house and then again when we arrived at the clinic. She has also generalized her anxiety to all doctors' offices/appointments and especially exam tables which she calls "shotter tables." After this last time, her physiatrist said we should consider going to the Comfort Zone, the place at the Children's Hospital where they sedate kids for procedures that would otherwise cause too much anxiety/trauma. They have child life specialists and nurses trained in ways to reduce the stress of the experience by doing things like blowing bubbles and using Emla cream at the site of the IV placement so the kiddos don't feel it going in.

It all sounds great, right?

But there is a downside to everything.

Because she will be under anesthesia, Hannah had to get a physical within a week of the procedure. She also can't eat or drink after midnight tonight. We have to leave the house at o-dark-thirty to be there an hour before the procedure. And it's yet another doctor's appointment, this time in the hospital, and there will still be anxiety and stress as it's new and strange and different. She will undoubtedly ask many times on the ride there, as she does when we go to ANY doctor's appointment now, if she will be getting a shot. And she'll be hungry and cranky and tired because we got up so early and she couldn't eat. And who knows how she'll be when she wakes up.

The alternative?

Another round of 6-8 injections into her leg muscles without any sedation. Five minutes of screaming and crying followed by more anxiety around future appointments.


Neither option sounds so good, does it? And we get to do this 3-4x a year.

Welcome to my world.

Don't forget the siblings

Came across a great article posted on the Sibling Support Project website, "the only national effort dedicated to the interests of over six million brothers and sisters of people with special health, mental health, and developmental needs." I found it very timely as we've been thinking about this stuff anyway, which prompted our visit to the child psychologist a few weeks ago. I share it here so that other parents of kids with special needs, who also have other children, can check it out.