Monday, December 22, 2008

Solstice thoughts

We trudged through the deep snow up the hill to a Hanukkah party yesterday, pulling the girls in their sled. We were invited by some new friends of ours so a lot of the folks there were unfamiliar to us. It turned out to be a very welcoming and warm group and the girls were way into the dreidels, the chocolate gelt and the challah bread. These were familiar items to them since we'd done some boning up on Hanukkah with a few books from the library. They were excited to see the manorah being lit and listening to how Hanukkah came to be. As we left the party one of the other guests light some sparklers that her kid had stuck in his pocket on their way out the door. We watched them flash and sparkle and then die out, and then we walked home through the dark of the early evening, pulling the girls in the sled right in the middle of the road because it had not yet been plowed, feeling the fat flakes fall on our cheeks and lips and hearing the quiet of a snowy night.

It was in many ways the perfect way to acknowledge the solstice. I have been kind of grumpy lately about the snow we've been having as I spend most of the time trying to find ways to navigate through it with two preschoolers and Hannah's walker. In my pre-kid days, I would be buckling into my snowboard and floating down the mountain on the fresh powder, whooping with delight. Now I wonder how we'll ever incorporate snow sports into our family routin, which can feel pretty isolating as just about everyone we know does something to commune with the powdery white stuff: snowshoe, ski, backcountry ski, snowboard...

But last night I realized we can still find ways to be out in the beauty of a fresh crisp snow. It might be different than it used to be, but there is magic to be found on a quiet snowy walk. The girls felt it, too. They were giddy and giggly and pink-cheeked and happy the whole way home.

So with the passing of this solstice I'm going to try to welcome the new ways we appreciate winter in our family (even if I still curse it occasionally!:)

Sunday, December 21, 2008

Four boots are better than two?

At Hannah's last visit to the physiatrist, I asked him to also take a look at Isabelle because she is a toe-walker and has been for awhile. It's difficult to stretch out Isabelle's ankles, especially on the right side where she is almost always up on her toes. And it seems like the structure of her foot has been changing as she spends more and more time up on tiptoe. We've tried cueing her to get down on flat feet but within seconds, she pops right back up.

The physiatrist said there are a lot of kids who toe walk for no reason at all and they often stop on their own. But sometimes they don't and their muscles get tighter and shorter and they develop structural, orthopedic problems. He suggested we consider orthotics so we can correct the problem early on. I'm hoping this will have the added benefit of making Hannah's orthotics more desirable to her as well (Hannah has been in a real "no boots! no boots!" phase lately). The flip side could be that I have TWO kids who fight me to put their orthotics on rather than just one. Oh the fun we will have!!!

Friday, December 19, 2008

Chatting with Hannah

video

Winter blues

It has been doing a lot of snowing up here. Big accumulating snows just keep ripping through, one right after the other. It's beautiful and very "Currier and Ives-ish" in our quaint New England town and makes things pretty festive for the holidays. But it's getting a little old, and the first real day of winter hasn't even arrived yet. Oy.

I'm trying to get out in between flakes as much as I can and am starting to get creative. Today we scored big when we went to the field house of the college where I work and took advantage of the wide open hallways, the raised platform around the ice arena, and the indoor track. It was a great place for Hannah to practice her walking and both she and Isabelle got some of their ya-yas out. It was also the perfect attitude adjustment: the walls of our house must emit some kind of toxic whine fumes because when we're home for too long, both of my lovely ladies seem to whine, complain and crank most of the time.

It's been awhile since I've had the chance to watch Hannah walk so much at one time and I noticed she had to stop often to uncross her feet because her left foot was turning in and tripping up her right. She's always had a problem with that foot but it seemed more noticeable this time. I'm not sure if it's because she hit a growth spurt or because it's another example of how her physical limitations become more obvious as she gets older and tries to do more.

Whatever the reason, it's good timing that we just recently decided to take the plunge and get Hannah her first round of botax injections in early February. We saw her physiatrist this week and while her range of motion was good and her tone had not changed since the last visit, Hannah has plateaued in her walking and hasn't been pulling up much anymore. I brought up the dreaded "B" word because I realized that it might be time to go for it and see what it does or doesn't do for her.

I'm nervous and hopeful. It is a toxin after all. And it will be 6 injections into her muscles. And she'll probably have some soreness and muscle weakness for a little while after. But hopefully the botox will relax her muscles enough so that she doesn't have to fight them so hard to get around and can use the time to make more progress with her walker and with pulling up, two areas we're trying to focus on right now.

It will be interesting to see how it goes. I hope it helps. But then does that mean we've jumped onto the botax bandwagon and will be subjecting her to regular rounds of injections so that she can keep reaping the benefits? And what does that mean? (Again, it is a toxin after all)

It's so hard to know the right thing to do some times. I feel like I have pretty good instincts and it seems like it's time to give this a whirl. But who knows? What if I'm wrong?

Sunday, December 14, 2008

Wish I would've said...

A woman came out to appraise our house the other day (we're hoping to re-fi) and she had her 6 week old son with her. The girls were ga-ga over the little guy and Hannah was sitting at the play table craning her neck to see him, so I got her out and brought her closer for a better view.

The woman turns to me (while Hannah is in my arms and Isabelle is standing right there) and says, "What's wrong with her legs?"

OK, so first let's just acknowledge that this woman was totally clueless, ignorant and oblivious to the fact that this is not the most appropriate comment to make.

That aside...

I so wish my response to her inane question was different.

It's funny, I don't really wish I had said something nasty to her. I wasn't in that kind of mood and didn't feel like that would have been very effective. But what I do wish I had said is something along the lines of what we regularly say to Hannah and Isabelle. Something like, "Well, some people's legs are not as strong as others and so we're working on building up Hannah's strength and right now she using a walker to get around. Right, Hannah?" Something that brought Hannah into the conversation instead of talking about her like she wasn't there. Something that was inclusive, respectful and considerate.

Instead I blurted, "She has cerebral palsy. The girls were born premature."

The woman went on to tell me a story about a kid in her daughter's class with some kind of condition (she didn't know what) who was now walking but took awhile to do so. And not long after that, she left.

I wish I could rewind that conversation for so many reasons. Both of my girls have big ears and pick up on just about everything that is said. I can only assume Hannah heard me say "cerebral palsy" just as she heard that woman ask what was wrong with her legs. At what age will she start to internalize these comments as part of her sense of self. When will they start to make her question who she is and why she is different? And what will Isabelle think of all of this?

At this point, I just hope that if they did hear this, they did not internalize it or think much of it and that it didn't make a dent in the more positive ways we've been portraying Hannah's differences up until now.

I also hope to think before I speak next time and do Hannah the justice she deserves.

Thursday, December 11, 2008

Overheard

Hannah: "I like your PJs, Isabelle."
Isabelle: "Thank you, Hannah."
Hannah: "Do you like mine, Isabelle?"
Isabelle: "No, I don't."
Hannah: "Why not?"
Isabelle: "I just don't. That's why."

Friday, December 5, 2008

Brokeback mama

I am beat down. My back, knees and tailbone have seen better days. Sure, some of it is that I'm closer to 40 than 30 and also that I was a long-distance runner for many years before I had Hannah and Isabelle. But a lot of it is the physical aspect of caring for the girls, particularly Hannah.

I find myself complaining about it a lot to other people and then I feel awful because if I were Hannah, I would hate to think that my mom was suffering because of me. I do try not to talk about it in front of either of the girls. I guess that all parents suffer to some degree because of their kids, right? (Let's pause as we all reflect back on the teenage years and the torture we put our own parents through...)

In any event, my body is in pretty rough shape and depending on what we're doing during the day, sometimes I'm so uncomfortable that I get really cranky and short on patience with Hannah and dread helping her with some of the things she wants to do because I know how much pain I'll be in after. For example, she isn't able to do things like push her baby stroller without my help because it's not sturdy enough to hold her weight when she leans on it. She also loves to help me clean the kitchen but she can't push the broom on her own and walk at the same time. Both of these things are back breakers for me, because I'm trying to both help her walk and hold onto whatever the item is at the same time. I sometimes try to engage her in a different activity and then I feel badly that I'm choosing what she gets to do. And she gets frustrated by that as well.

Trips out with the girls are rough also. I'm often holding Hannah on one hip (she's about 22 lbs), her walker on the other hip (probably around 15 lbs), the diaper bag is strapped across my chest and Isabelle is trying to find some part of me to hold as well. I feel like I am perpetually hunched over with arms flailing. I know this is a position familiar to many parents: we're like domestic sherpas, schlepping kids and gear in the most anti-ergonomic ways possible. But usually those phases where you are doing the most carrying and bending and straining don't last more than a year or so. With a kiddo who has mobility difficulties, the phase can last a lot longer and sometimes it never ends.

It's so frustrating to me sometimes because if things were different and Hannah were more mobile, I would be so much more inclined to be out and about with the girls in all kinds of weather. By nature, I'm a pretty active, outdoorsey kind of person. I wouldn't hesitate to bundle them all up and take them on adventures all over the place. But because I know how much effort it will take and how many Advil I'll have to pop afterwards, I find myself being much more of a homebody or gravitating toward more sedate activities.

In a funny way, it's almost harder now that Hannah is getting more independent. Before she was using a walker, she was more content to sit in a stroller and I didn't feel bad if she wasn't out walking. But now I want to bring her walker everywhere we go, to help build her endurance and confidence.

In two weeks, I'm scheduled to go see the same physiatrist Hannah sees, so that he can assess what's going on with my various aches/pains and give me some recommendations. I'm pretty sure I know what I need (massage, adjustments, yoga/pilates classes) but realistically, I don't have the time or the disposable income to do any of those things on a regular basis.

I guess I'll have to figure something out though, because I owe it to myself and to the girls.

Thursday, December 4, 2008

Merry merry








Bring on the holiday cheer! We got back on Friday night from our Thanksgiving travels (had a great time visiting everyone and Hannah and Isabelle LOVED playing with their 12 cousins!) and we spent the weekend getting a jump on the Christmas season: we went to a tree farm and picked out our tree, decorated it and then baked and decorated Christmas cookies. It was such a fun weekend and the girls were so into it this year. When we finished everything late that afternoon, we all squeezed onto the couch and watched the lights on the tree and I said to B, "I love our family."

Tuesday, November 25, 2008

Grateful


We have much to be thankful for. We are well-fed, housed and clothed. We live in a peaceful place with kind people and the beauty of nature all around us. We have a lot of love, laughter and fun in our lives every day. We have each other.

Happy Thanksgiving.

BRRR!


This picture was taken last Sunday and when we woke up that morning, it was only 4 degrees out. Not 24, 0r 14. Just 4. F.O.U.R. That's crazy for November, even in these parts!

The girls were not deterred and had big designs on the snow outside (yep, we had also gotten about 3" on Saturday) so off they went-bundled up and ready to rock while B pulled them around on their sled and I watched, warm and cozy, from inside. I'm no dummy!:)

Sunday, November 16, 2008

Going Home


Three years ago today, our girls were discharged from the hospital after 54 days in the NICU. They were around 35 weeks when they came home, each weighing just under 5 lbs. It was a really warm day for November but we had them bundled to the hilt and they probably sweat bullets the whole drive home! There was no room for me in the backseat with them so I basically just rode backwards in my seat the whole time, obsessively checking them to make sure they were okay.

We got home, I got settled into the glider rocker in their bedroom and Brendan put them each in my arms. Finally we were all home.

Some days it feels like this was a million years ago. We've come so far since then. And yet other days, I can be back there in an instant in my mind's eye.

Welcome home my sweets. What a journey it has been. We love you so.

Saturday, November 15, 2008

Want to be inspired?

Click here to read and watch a quick video about ABC's latest "Person of the Week." Get the tissues ready!

Wednesday, November 12, 2008

Brag fest

It's always good for me to note Hannah's progress periodically so that I remember how far she's come and can extrapolate out to where I imagine she might be in the future. It keeps me hopeful and positive.

So here's my brag list of some of the new and exciting things Hannah has accomplished in the past 9 months or so:

  • Walking in and steering her walker
  • Cruising
  • Standing independently for several seconds at a time
  • Getting from the floor to sitting
  • Pulling to a stand
  • Climbing several stairs in a row with assistance
  • "Wall walking" (walking with one hand on the wall and the other hand holding mine)
  • Taking a step or two holding just one hand
I am so incredibly proud of how hard she works and how motivated she is. Hannah, you're my hero.

Tuesday, November 11, 2008

Squeaks and scratches

A lighter post to bring some levity to the blog after yesterday's downer:

Living in the north country, once the weather settles into a regular routine of cold snaps and hard frosts, all living things seek shelter. This includes mice. If you live in an old house like we do (circa 1900) there are all kinds of points of entry for these little critters to come on in, so we have a regular routine of setting traps this time of year.

But one place where we always forget to set a trap is the car. It's the perfect spot for a mouse, what with the cozy car seats and the leftover cracker crumbs everywhere. And the napkins and tissues in the glove compartment make for a perfect nest.

Today on the way to hippotherapy, I opened the glove compartment and saw the telltale signs of torn up napkins and mouse turds. Sweet. I also heard scratching and squeaking. I just prayed the bugger wouldn't pop it's head out and race across the dashboard before I could get home.

I'm sorry to say that once B gets home tonight with some more traps, your time will come my little friend. Such is the way of life in these parts...

Monday, November 10, 2008

Today I'm weary

I haven't felt this way in awhile. Not sure if it's the gray November day, or the fact that Hannah has been pretty tough lately, or because it's Monday. Whatever the reason, today has been a hard day.

It started when we got up. Lately, mornings have been a real trial. The girls are whiny, crabby with each other and needy. Makes it hard to get them organized to start the day. For awhile, Isabelle was giving me a run for my money but now Hannah has taken over the reigns. Hannah expresses it in different ways: where Isabelle is defiant and disobedient, Hannah is super emotional. She got absolutely hysterical at breakfast when she spilled some cereal. The way she reacted, I thought for a minute that she got badly hurt somehow. She was that hysterical.

We muddled through the morning and managed to get out the door for story time which we haven't gone to in awhile. I was so excited to get out of the house and connect with some other moms about the challenges we've been going through related to the "terrible threes." I also thought the girls would enjoy the change of scenery, the stories and the craft project we always do at the end of story time.

Ah well...

We get to the library and the elevator is not working properly. I have to run upstairs to ask the librarian to help us while the girls wait and whine for me on the middle floor (story time is in the basement of the library). It takes the two of us 5 minutes or so to get it working, all the while kids and parents are streaming in behind us, kids begging to "go for a ride," parents trying to shoo them downstairs, me just wanting to make a quiet entrance and not a major event out of it.

Already, instead of feeling relaxed I'm tense and annoyed. Wishing we could just go someplace and have it be easy. Then there are the other moms. I recognize a lot of them and they're all friendly and it's nice to see them. But I'm too preoccupied trying to get Isabelle's boots off and encourage Hannah to walk so that the people behind her can get inside, so there isn't any chance for the mutual mommy-venting that I was looking forward to. And the moms are too preoccupied with their own social time to realize that they're blocking Hannah's way so I have to keep saying "excuse me, excuse me" while I'm hunched over Hannah trying to get her to walk.

Story time itself goes okay. The girls are pretty quiet, as they usually are when we have a somewhat new experience (we haven't been there in awhile). I'm aware that Hannah is drooling a bit and her mouth is sort of hanging open and between that and the fact that she's not saying much, it crosses my mind that people probably think she is cognitively as well as physically disabled. I just wish they could hear her at home, talking up a storm.

After story time and the craft project, I have to get the girls bundled back up and out the door. It's a task I dread. I usually carry Hannah so she's easier to extract but Isabelle takes advantage of the fact that my hands are full to linger and dawdle since she knows it won't be easy for me to just pick her up. I get Hannah to her walker and again there are parents and kids everywhere, blocking Hannah's way. I start to get frustrated that no one makes any effort to clear a path for her. With all of the people in such a small space, it's hard enough to get Hannah to walk. When she does get her feet moving, she crashes into the knees and feet of the oblivious. Too bad, I think.

The girls get on their coats and hats and we make our way back to the elevator. I struggle to open the door since Hannah has walked right up to it and it opens toward you (what a lame design) No one offers any kind of help. We get into the elevator and I glance back to see a crowd of kids watching us with a wistful look, some asking their parents again if they can take a ride. I don't say goodbye to anyone and don't look back again.

By the time we get home, I'm totally exhausted and we've only been gone for a little over an hour. I'm cranky, my back hurts, and I feel sad. Life has gotten easier to handle in so many ways, but some times I still get weary from it all: from the physical effort it takes to get the girls out the door and ensure Hannah can get what she needs, and from the emotional effort it takes to ignore the stares and try to act like everything is totally normal and fine in my life.

Friday, November 7, 2008

New Boots



Hannah got her new orthotics yesterday: these are the hinged, articulating AFOs which will give her greater range of motion in her ankle and foot. She seems to be doing great in them so far and is actually asking to put them on which is a first (Mommy, can I wear my purple boots today?) Not sure if it's just the novelty of the new floral pattern but I'll take it!

I'm excited to see how she progresses with her walking, cruising and standing in these, as those are the big things she's been working hard on right now. I didn't feel any of that crushing sadness that I felt when we got the first pair, which makes me realize I'm getting used to my new reality. Now, I'm just happy to see that she'll have another tool in her toolbox to help her get what she needs.

Sunday, November 2, 2008

Trick or treat

This year, the girls really got the idea of Halloween. We talked for a few days before about going up to people's houses, saying trick-or-treat, and getting candy. Hannah was especially excited about it and kept asking me when she could go get candy. They've never even had candy before so I'm not sure why she knew to be so excited about it, but she was. There were some battles about costumes but they eventually embraced what my parents' bought them-thanks Grammie and Papa! Hannah was a dragon and Isabelle was a sheep. B and I even got in on the action thanks to our babysitter who brought over a whole suitcase full of costumes for us to chose from.

We had friends over for dinner and then all went up into town to trick-or-treat. We live in a small village with about 6-7 streets in a grid that make for perfect trick-or-treating. Our village is surrounded by lots of rural towns so people from all over drive in to cash in on the bounty. When we got up to town there were hundreds of people out and the atmosphere was so festive. It helped that it was a pretty mild evening. Houses, churches, the library and fire station were all decorated and handing out candy.

The girls were wide eyed, taking in all of the sights. I think they were so caught up in the action that initially, they even forgot about getting candy. But after we went to a few houses and they got the hang of the whole "put out your bucket, say trick-or-treat and get candy" concept, they were pretty hooked. Every time we stopped for a minute, Hannah would say, "Let's go to another house and get more candy."

We brought Hannah's walker and I had visions of her cruising around in town in her costume, but there was just way too much going on for her to focus on walking. We wound up walking holding her hands or carrying her the whole time. I was kind of bummed but she didn't seem to mind and was having so much fun that I realized I need to just stay focused on her and not on my own expectations of what constitutes a good time (something I always struggle with). I definitely had some moments of sadness as I watched all the kids racing around with their friends, realizing that Hannah might not ever be able to do that. But the more I stayed focused on Hannah, the easier it was. I also saw a boy who was maybe 10-12 years old and was wheeling himself around in his wheelchair. He was with some friends and seemed to be having no problems keeping up with them in his chair. It made me think more about the difference between "walking without assistance" and "independent mobility," and the fact that for Hannah, there will probably be a time and a place for both of these means of getting around.

Anyway, we lasted about a hour before everyone started to peter out. We let the girls try a few different kinds of candy and then told them we'd put it away and they could pick out one piece each night until it was gone. Once they went to bed, I fished out all of the choking hazards and divided up the loot so that they each had 5 pieces of the exact same kind of candy to chose. Last night as soon as dinner was over, they asked for their candy. Tonight they didn't. Who knows, maybe they forgot about it already (here's hoping!)

All in all, it was a great Halloween and I'm so excited for more fun holidays with the girls now that they're old enough to really understand and enjoy them.

Wednesday, October 29, 2008

Winter came early

We had our first snowfall last night...barely more than a dusting but just enough to cover the lawn and provide some wet, sticky snow to play in. The girls were so excited to get out in it...I was less than excited to get back into dressing for winter weather (especially since it isn't even November yet!)

It took me about 45 minutes to get both girls bundled up and ready to rock (I'm a little rusty!). This is the first year that Hannah is walking in the snow with her walker so her first steps were a little rocky. It was so slushy and wet that I think she was having a hard time pushing the wheels through the snow so she wasn't that psyched about moving around. But I figured out that I could pile snow up on their sand/water table and Hannah could stand at it with some sand toys and play with the snow that way. Of course with her big bulky mittens on, she was getting really frustrated trying to figure out how to pick up and play with her toys.

Hopefully we'll get our winter groove on soon and find the best way for both Hannah and Isabelle to enjoy the snow, since it seems like we might be getting a lot of it this year! We did manage to make some snow "busts"--not the full snowman, just the heads!



Saturday, October 18, 2008

Notable Quotables

The girls have SO much to say all of the time and I keep meaning to write some of the funnier/cuter quotes down but time gets away from me.

Here are a few of the more recent ones:

ISABELLE
  • Mommy, listen to my words. Understand what I'm saying.
  • I'm angry about that so I can't sit on the potty right now.
  • I want to go to India and help the Bengal Tiger. You can come in my airplane to this country (This one's the result of the one Wonder Pets episode the girls have seen about 20 times).
  • If I go to preschool and feel sad and only, I'll hold Hannah's hand (Isabelle says "only" instead of lonely. I love it.)
HANNAH
  • Did you cook this chicken, Mommy? Thank you for this dinner, Mommy (What a kid!)
  • I work up in town at my preschool. And I take care of the kids when they're sad.
  • Isabelle is my favorite sister.
  • I have a baby growing in my belly but it's not ready to come out yet.
  • Maggie is a good dog. She's an old girl.
  • Oh, there are so many things to look at here and fun projects to do!
There's so much more where that came from...it's just all I can think of right now. My girls are CHATTERBOXES. They may be able to sit in one place and play for long stretches of time which is great, but MAN can they TALK!

Birds' Nest Swing

Check out the cool swing Hannah's OT loaned us. You can get them at IKEA. We hung it in our kitchen and it will give Hannah opportunities for "rebalancing" her sensory systems. Our girl gets overloaded easily by different stimuli so things like swinging, massage and other techniques help her to dump out that extra stimulation and be better able to stay calm and focused during the day. When we put her in this swing, Hannah definitely seemed to get right in her "zone" so I think it will work. It's like what happens to her when we go for walks in the stroller. She just kind of checks out/zones out/takes a sensory break. I think we could all use the birds' nest swing now and again, don't you?




video

Friday, October 10, 2008

Big stuff

I caught Miss Hannah standing by herself today, totally unsupported, on two different occasions!!! This is such huge news that I'm a little afraid to believe it's true. The first time, she and I were playing and she let go of her walker and reached for one toy with one hand and another toy with another hand. I checked and sure enough, no part of her body was touching the walker. Then tonight after dinner, a similar thing happened. She was in her walker and listening to some music. She had her feet firmly planted in a good supportive stance and she started to clap her hands to the music. I checked again because she often looks like she's standing without support but in reality, her hip or her bum will be resting on the back of the walker. But just like earlier in the day, no part of her was touching it.

For awhile now (maybe I posted about this already?) Hannah's been playing around/trying out the notion of standing on her own. She'll be standing in front of me and just barely holding on with one hand on my shirt. Or she'll be in her walker and one teensy part of her hip will be resting on the back of it but otherwise she'll be unsupported. So now she's doing it on her own! B tried to get her to do it again outside of the walker and she did manage to stay up for a few seconds before she got too excited and arched her back and lost her balance. The best part is that she wants to keep trying and she is really so proud of herself.

I can't wait for the day when she can just stand there on her own two feet. We're getting closer, I can feel it in my bones!

Tuesday, October 7, 2008

Apple picking

Last weekend we took the girls apple picking at an orchard near our house. It was a warm but misty/rainy day and we weren't sure we were going to brave the elements, but I'm so glad we decided to go. The girls had a great time picking. eating apples and cider donuts, and getting pumpkins to bring home. Later that day we made a yummy apple pie. All in all, it was a really nice Fall outing with the family.







Sunday, October 5, 2008

Terrible Threes

What a misnomer: the terrible twos. At least in our family. The emotional ups and downs, whining, tantrums, frustrations and defiance have not abated since the girls turned 3. Don't get me wrong, it hasn't been ALL bad. Hannah and Isabelle are more and more fun to be around as we watch them become their own individual people with their own individual personalities, wants and needs.

But...

Interspersed with this fun are some moments of misery. And God love her, Isabelle seems to be the one most striken with these fits of "terrible-ness." You could say that she just feels everything in her world with such passion and intensity. Yeah, something like that...

Isabelle's battleground for control often centers around the potty. I'll tell her she needs to go potty, because she really does need to go, and she kicks and screams and refuses to sit down to do her business until I all but strap her onto the seat. Or after she goes when I tell her to wipe, she says she's still going and refuses to get off the potty. Won't get on, won't get off. Pretty much she won't do whatever it is that I ask her to do. It's always great fun when it happens in a single public restroom with a line of people waiting outside for their turn.

We're trying hard to teach the girls to use their words to express themselves instead of hitting, biting, pushing, etc. It's coming back to bite me in the keister now as Isabelle is also fond of telling me, "I'm very frustrated right now, Mommy, so don't do that to me," when I take her away from something she's doing. So I'm stuck: great that she's using her words, but not great that she's using them to get her way. Argh!

A lot of this drama is related to the fact that I can't remember the last time Isabelle took a nap. I think maybe it was last week some time, but I'm not sure. I keep telling myself she is no way ready to be done napping, because we've been through stretches like this before where she doesn't nap for over a week and then gets herself back on track. She is so much happier and easier of a child when she naps, and I'm a much happier mama. But I know many kids drop their nap around this age so I'm preparing myself for this possibility. If it is part of a permanent trend though, I think things around here are going to be pretty ugly for awhile until she gets used to having less sleep.

HELP!

Friday, October 3, 2008

Health care policies and the presidential candidates

As a parent of a child with special needs who depends on the health care system to maximize her quality of life, I found the following report by The Commonwealth Fund to be very informative. It's so difficult to parse through the specifics of each candidate's policies amidst all the spin, but this report and the interactive Web feature make it so simple that even I and my addled brain could make sense of it!

The report, The 2008 Presidential Candidates' Health Reform Proposals: Choices for America, describes how each candidate would seek to expand health insurance coverage, improve the quality and efficiency of the health system, and control costs.

The interactive Web feature allows you to compare the Obama and McCain plans side-by-side in 24 different areas.

Check it out!

Wednesday, September 24, 2008

And then they were three

Hannah and Isabelle turned 3 years old on Tuesday, September 23 at 12:49 and 12:52 pm.

Wow.

Three years old.

How far they have come.


Wednesday, September 17, 2008

Dodging the botax bullet

Hannah had another appointment with her physiatrist yesterday. We last saw him in July and every time we go, he talks about botax injections being an option we'd most likely explore at some point in the future. So I always steel myself before these visits, expecting him to say "OK, let's go for it." Although I realize it's pretty likely she'll need botax some day, my goal is to avoid it for as long as possible.

Yesterday we learned that we dodged the botax bullet again-horray! Dr. B was really happy with Hannah's tone and range of motion, and the mechanics of her stride when walking with her walker. He said her AFOs were looking a little small so I made an appointment for her to get fitted for a new pair and this pair will be hinged/articulating so she can engage her ankles and feet instead of being locked into a stiff brace. We're going to continue with hippotherapy and regular PT and OT as well as try to get some warm water swimming into the mix for the colder months.

I've been watching Miss Hannah and have known that she is getting stronger, more fluid with her movements and staying flexible but it's great to have "the expert" say the same thing. She continues to amaze me every day with her motivation, determination and spunk. Hannah's personality and our efforts to keep her moving and grooving are definitely making a difference!

Tuesday, September 2, 2008

Awakening to differences

I think that Hannah is starting to become more and more aware of her differences. In the past week, she has said to either B or I, totally out of the blue, "Sometimes people have trouble walking." The first time she said it, my heart jumped into my throat and my eyes welled with tears. I tried to keep myself composed and said, "Yes, they do. And sometimes people have trouble with other things like seeing, and they need glasses. Or they can't speak so well and they use sign language to talk." She has said it several times since then, and we tell her some version of what I said that first time. One time I also asked her, "Hannah, do you have trouble walking?" And she replied, "Yes, I do." And I said, "And you use a walker and that helps you to walk and get strong. And you're doing such a great job with using your walker." And she said, "Yes, I am," and then she was off to do something else.

One time Isabelle piped in with, "If someone is pushing Hannah in her walker she can just say to them 'No thank you, I can do it myself.'"

Clearly both girls are thinking about the fact that Hannah can't get around like most other people they know. And I'm trying hard to figure out the best way to deal with this. My main goal is to make sure that Hannah has a strong sense of self. I want this for both of my girls and often tell them how proud I am of them for one thing or another, and how they have big strong bodies and big strong brains. But with Hannah, I want to be sure that I also acknowledge and honor her disability and her struggles and frustrations with it, without making her feel inadequate because of it.

Recently I told her, when she seemed to be losing her patience with not being able to get where she wanted to go, "I know how frustrated you are that you can't get over to the table as quickly and easily as you want. It stinks, doesn't it? But you're doing such a great job with your walker and you are getting stronger and stronger all the time."

The other thing Hannah has been doing a lot of lately is asking for her walker so she can walk around. We were at the lake with some friends and she was playing in the sand and she looked up and said, "Mommy please get my walker so I can walk around."

I am so glad Hannah is not afraid to ask for what she wants. I only wish I could give it ALL to her.

Wednesday, August 27, 2008

Easy riders

Hannah and Isabelle are now the proud owners of their very first tricyles! Both of them came this week; Hannah's is an adaptive tryke from Ambucs.org, a very cool organization which provides these amazing wheels for kids who need a little extra help to get peddling.

With the help of Hannah's PT, Barb, we got them out on our road today, which is a really quiet dead-end road with a slight slope to it so it's perfect for letting them get the hang of it with the help of the hill to give them some momentum. Barb was really impressed with how quickly Hannah got herself moving with the hand pedals and that Isabelle could peddle with her feet so easily. Go girls go!

Below are a few pictures and a quick video of the momentus occasion. The whole time I was watching them, I just couldn't get over the fact that my girls are old enough now to be riding bikes. Where has the time gone?!






video

Saturday, August 23, 2008

seeking a reverse kaye walker with wings

The other day I was watching Hannah make her way around the house with her walker and it really struck me, how much it must SUCK to have to drag this big metal thing around with her all day when all she wants to do is get quickly from point A to point B and keep up with her sister, have her hands free, and not keep crashing into the walls or getting stuck trying to go around corners. It made me really sad. I keep myself so focused on Hannah's progress with her walker (now she can lift the front wheels, now she can steer, soon she will be able to lift herself into and out of it safely...) that I don't allow myself to stop and look at exactly what it is that she's walking around in as she tries to go about her day like a typical almost-3 year old. I haven't looked that closely at her walker, in fact, since we got it. I've chosen instead to look past it, toward the potential it holds for Hannah in terms of independent mobility.

Ultimately that independence, in whatever form it takes, is what is most important for Hannah. She tells us regularly that this is what she wants. "I want to go on the potty. I want to climb into my chair myself. I want to walk around. I want to push the baby stroller...." and so on.

And I want this for her as well. I just with she could attain these goals without needing to lug her walker around with her. Grateful as we are that she has one and has figured out how to use it, it weighs her down and holds her back. And Hannah's spirit, well it's light as air and just wants to FLY. Maybe her next walker model after she grows out of this one will come with wings.

Friday, August 22, 2008

Roid Rage

If you've ever had to give your kids prednisone (steroids) for croup/wheezing/asthma, then you know what I'm talking about. It's true...even in small doses this stuff is EVIL. Poor Hannah started wheezing on Sunday night, followed Monday morning by a bad cold and cough. We thought we had the wheezing under control with albuterol and flovent, the two inhalers we have around the house for just these occasions. But on Wednesday even after a breathing treatment she was still really tight in her chest and wheezing. Off to the pediatrician we went and he prescribed prednisone.

It's been awhile (probably about a year) since we've had to give this to them so I forgot or blocked out what the side effects are like. Well I'm here to tell you that they suck. First off, Hannah has had a really hard time settling down for naps and bedtime. It takes 4-5 tries with lots of screaming and crying and requests for milk, songs and stories before she finally crashes. She's also woken up from her naps thrashing around, hitting and scratching and crying like she is pissed like nobody's business. I figured out yesterday that if I danced around the room with her really fast while shushing her and patting her back, she would settle down after a few minutes. It was like going back to the colic days. Other fun side effects include Hannah's immediate frustration and anger when she doesn't get what she wants, her constant whining and crying, and her urge to quickly lash out and scratch, pull hair or hit anyone in her path when she's upset.

It's awful.

Sunday is the last day we have to give this to her and I CANNOT WAIT. I want my girl back.

Wednesday, August 13, 2008

Stall Tactics

Isabelle is all about stalling before bed. It's gotten pretty bad. A friend of mine said she's started bringing a timer into the room with her when she puts her son to bed and that seems to have put a stop to it. I think we're going to have to try that tomorrow. Here's an ABRIDGED version of what went down tonight (with each sentence, I attempted to walk toward the door to leave but then she started up again with another request which, if ignored, would cause her to scream and cry):

"Mommy fold my blanket. Mommy wipe my eyes. Mommy wipe them again, they're still wet. Mommy I want green and blue and red candles for my birthday. Get my blue egg, Mommy. I want it with me. Mommy tuck me in. I need to kiss and hug you again, Mommy. I have to do it again because I missed. Daddy tuck me in too."

I almost threw myself out the window. Seriously.

The virus blues

So we had a relatively healthy summer, all things considered. The girls have steadily built up their immune systems and are less prone to catching everything under the sun. But all that fun at the Ranch took its toll and Hannah was down for the count most of last week. Nothing major, just a virus that lingered. In general she tends to get hit harder and for a longer time when she gets sick, as compared to Isabelle. So now, a week from the onset, Hannah is still not herself.

She doesn't have a temperature anymore or any other noticeable symptoms, she's just very clingy and cranky, doesn't have much of an appetite, and has little desire to do much in the way of independent mobility.

It's SUCH a bummer after the progress she's been making; she's been on such an upward trajectory lately that to see her stall out again is kind of crushing. I have to remind myself that Hannah works SO MUCH HARDER to do the things that most kids her age take for granted: sit, stand, walk, kneel, pull up...so she definitely deserves a break sometimes. In some ways, it gives me new respect for her perseverance and determination. It would be so much easier for her to just sit back and let the world go by while someone else moves her body for her. But she keeps pushing herself to do these things and I guess it's inevitable that eventually, her body will take charge and say, "OK kid, let's just chill out for a bit."

So we're chilling out now and watching a lot of Thomas the Train and dealing with the constant rain in our neck of the woods and basically, we have the virus blues...

Monday, August 11, 2008

The Ranch

We've been busy around here; we had family in town and then we went with B's family to this great family resort in the Catskills of New York: Rocking Horse Ranch. It was chock-full of nonstop activity and the girls absolutely loved it. Pony rides, two outdoor and one indoor pool, bonfires, a lake with kayaks/paddleboats/waterskiing, horseback riding for the older kids and adults...TONS of good food...very friendly staff...and all 12 of the girls' cousins plus aunts, uncles and Grandma.

We're still recovering a bit: poor Hannah caught some kind of bug and is still not quite herself. But despite that, it was so nice to get away, hang out with the rest of the family and also enjoy the girls at this amazing age of discovery and fun. I know I'm biased, but they're both really cool kids to hang out with so having this time with them was really special.

And now it's back to the grind...







Wednesday, July 30, 2008

Universal playgrounds

I've posted a few times about the playground issue because it's one I grapple with regularly. Playgrounds are such amazing resources for kids to develop all kinds of important skills and abilities, and most communities have them in one fashion or another. But so few of them are designed with a disabled kid in mind.

Now that we are raising a child with a physical disability it's hard for me to fathom that an inaccessible playground would ever be created in the first place. But like most people, until I got up close and personal with what it means to be physically challenged, I didn't spend that much time thinking about how inaccessible the majority of our communities are, not just playgrounds.

So now that I live in this world and am faced with it regularly, I feel compelled to try to do something about it and the playground piece is one I think I'd like to try to take on. I started to do some research and found out about this cool organization, Boundless Playgrounds, with the mission to help people like me get started on the road to building a universally accessible playground in their community.

If you go to the section of the site which lists Boundless Playgrounds across the country, you will find some amazing spaces that have been created for kids. It's incredible how even simple things like installing sand tables instead of sand boxes can make a huge difference for a kid in a walker or a wheelchair. Perusing the links to the different playgrounds is like visiting Santa's workshop. I'm so excited about the possibilities...and also totally overwhelmed at the idea of trying to make something like this happen around here.

I'm not sure where I'll go with this, but if anyone out there has ever tackled a similar project in their own community, I'd love to hear your story.

Potty time!

We're happy to report that Miss Isabelle is marching her way toward a diaper-free life! She is now wearing underwear all day except for naps/bedtime and has had few accidents. We've been "dabbling" in potty training for awhile now and just finally decided to take the plunge and let her go for it, and she's done great. I can't get over seeing her running around with her little bum in underwear instead of a big bulky diaper. It's all I can do to not give it a big squeeze every time she runs by.

Hannah expresses a lot of interest as well which is great. She definitely wants to try and knows when she's going/has gone. She just hasn't quite figured out how to hold it until she gets to the potty. We'll get there!

Wednesday, July 23, 2008

I can fly

Hannah decided she wanted to wear her butterfly wings to hippotherapy last weekend. She hadn't been in a few weeks and seemed kind of anxious about going ("I don't want to go see Tara, Mommy") so I told her that the wings would give her courage and strength.

She was still pretty tentative when she was up on the horse but she did manage to whisper a few commands to Tara and give her a hug at the end which was great. And of course as soon as she got off the horse she was talking a mile a minute again. ( "I did a good job, Mommy. Where did Tara go? Where's the other horses" etc etc)

I can see the value in consistency with hippo, because when we haven't gone in awhile it takes Hannah almost the full session to get warmed up and relaxed enough to gain something from it. But even when she's tense, her posture still looks great and she is able to straddle Tara pretty easily.

Hannah the courageous butterfly perseveres!

The wonder of imagination

Hannah and Isabelle are such a trip lately. This is such a fun age (they'll be 3 in September). Right now, they're big into comparing and pretending and imagining. For example, we 've been eating a lot of watermelon and I cut them into slices that are in the shape of triangles. Isabelle decided they look like sailboats so now when they eat watermelon, they each hold up their slice and move it around in the air and chant, "Sail away, sail away, sail away..."

They also take great pleasure in realizing things that are similar, like the same color or type of object or shape. One or the other of them will spot something in a crowd, like someone wearing a blue t-shirt, and yell out with glee, "That's a blue t-shirt, like the blue in the sky! They're the SAME!"

As it's high summer in these parts, we also have a lot of thunder and lightning storms. Isabelle has become a weather forecaster in the making, built largely upon her fear of thunder. When we go outside to play, she nervously scans the sky and asks me, "Are they dark clouds Mommy, or white puffy ones?" "Is it going to rain?" "Is Mother Nature going to make loud thunder, Mommy?" (My explanation of thunder has been that it's Mother Nature saying "it's too hot outside" and clapping her hands together to make thunder and rain to come and cool us off. B on the other hand, ever the engineer, tries to explain the science behind cloud formation, warm and cold fronts, etc.)

Isabelle has also gotten waaaay into her baby dolls lately. We don't have a lot in the way of doll accessories around here as I tend to choose more gender-neutral toys for them. But despite this, she is all about acting out the mother role, especially with her favorite and largest baby doll, aptly named "Big Baby." Big Baby comes pretty much everywhere with us now and the other day, as we were getting ready to leave our friend T's house Isabelle cradled Big Baby in her arms and clucked, "It's okay Baby, I know you don't want to leave T's house. But we'll be back again, I promise. It's ooookaaaay."

Isabelle has also gotten into this thing where when we brush her teeth, she first lists off all of the different items that reside in her mouth which we have to acknowledge when we brush. So tonight before I start to brush she tells me, "In my mouth there are two bunnies and a teddy bear. And, and, and a puppy dog. And a marching band! The marching band is playing and they are all dancing."

Hannah has her own toothbrushing routine which involves one of us identifying the various instruments in a marching band (we've been to a lot of parades this summer) and then humming some military march or another while we brush.

I could go on and on...the list of funny and quirky and weird things that they say and do is endless! I wish I could remember to write them all down when they happen so I can recall them when they're surly teenagers who won't even look me in the eye.

Saturday, July 12, 2008

More summer fun

I haven't posted any pics of the fun things we've been doing lately, so I'm going to try to catch up a little.

At the end of June, we did the Relay for Life with B's family in honor/memory of his dad who died of a brain tumor 8 years ago last December. This was our third year doing it; we do it every other year and the whole family participates (his mom, 4 older brothers and sisters and all of their kids). The girls were really into it and kept calling it the "big relay race." Hannah wanted to spend the whole time doing laps around the track which was great. Isabelle was more into learning how to use a hula hoop!

But most of all they loved hanging out with all 12 of their cousins and their Grandma!


Two weekends later, it was the 4th of July and we got to spend more time with B's family and all the cousins at the lake. This was the girls' 3rd year going and this time, they were old enough to really take full advantage of the summer lake experience. They stayed up late, swam, played, watched a parade, ate ice cream way past their bedtime, went in a paddleboat and a kayak...needless to say, 5 minutes into the trip home on Sunday afternoon, they were both asleep. This is saying a lot, considering they almost never sleep in the car.



Summer rocks!

Wednesday, July 9, 2008

Hannah's on fire!

Our girl continues to do amazing things. She is the Queen of Transitions lately. Her latest trick is that she figured out how to get off the couch (safely!) Now she wants to apply that skill to slide herself off any chair she encounters, including her high chair. She is definitely NOT content to sit and watch the world go by, thank God.

I found her standing up in her crib again this morning; this is the 3rd time it's happened so I think we can safely say that she's got that skill down pat. Last week, with a lot of cheering and prompting from us, pulled herself up into her walker, turned around in it and started walking. Independent mobility, here she comes.

She also asks to go up and down the stairs "by herself" constantly and she can make it all the way up just holding onto one of my hands. Going down is a little more tricky but she is just as determined to keep trying.

She's a regular pro at getting up from the floor into sitting now (well, she gets into a "W" sit which is not great on the knees/legs but gives her a solid base of support and some nice independence so we'll take it!) So now that she can get up, she is much happier crawling around from toy to toy since she knows she isn't stuck in that position.

Cruising laterally is getting easier as well. Little Miss H can cruise from one end of her play table to another, or from the play table over to the window.

And you should see her in the kiddie pool. If it's possible to do laps in a kiddie pool, she will do it. She starts out sitting nicely on her bum with her legs crossed, then flips over into a kneel, than back on her bum, then laying with arms dangling over the edge of the pool and legs kicking out behind her. All the while she and Isabelle are hysterical laughing.

All of this work and newfound skill is changing her body shape as well. Her little legs are becoming really defined and muscular and her thighs even seem to be developing some bulk to them. She's still our peanut to be sure, but she looks like a peanut who's been working out a lot!

Suffice it to say, I am THRILLED beyond belief with all that Hannah's accomplished lately. She is so determined and each success gives her that much more confidence and independence. As a result, she's been a lot happier and less frustrated. She and Isabelle can really play well together now too.

I know that Hannah has a long, hard road ahead of her and that some things will always be challenging. But she is still so young and has accomplished so much that I have very high hopes for where she's headed. You go, girl!

Tuesday, July 1, 2008

Paste on your happy face

After our appointment today we told the girls we'd go get a bagel. They were really excited because this means walking down the marketplace, a cobblestone pedestrian walkway with lots of interesting things to see. Last time we had an appointment we did this, and they loved it. Hannah cruised up and down the walkway in her walker and was a total champ. So we thought it would be a good idea to do it again.

It was another beautiful day so there were a lot of people out and about and thus, lots of people staring at Hannah with her AFOs and walker. She did great-not quite as good as the last time but she still made some good progress. But it's very stop and go and it requires infinite patience to wait with her while she walks a few steps, stops to check something out, asks to be held, walks a few more steps, and so on. All the while, people are stopping to look at her and us.

Most people smiled and were friendly, some just looked at her curiously. Several looked at us and said, "she's so cute," or at her and said, "you're doing great!" One woman let out a kind of screech and said, "Oh, looook at her! She's so cuuutteee!" And then she turned to me and asked, "Do they think she will walk someday?"

It takes SO much emotional and physical energy just to get out there with Hannah and her walker and some days it's even more of a challenge. Today was one of those days. I just was not in the mood to paste on the "I'm so okay with this" smile and humor people who approached us. I'm glad they aren't mocking or making fun of her, but it's attention nonetheless, attention we never would get if Hannah were a typical kid. And it really wears me down.

Maybe next time we will skip the walk down the marketplace for a bagel. It's a lot to do after an already taxing appointment. Or maybe next time the happy face will paste on a little easier.

The W word

We took Hannah to the physiatrist for another appointment this morning and anticipated making a plan for botax. Good news: he thinks her range of motion is really good and doesn't think there's a big need to do it right now! The other good news is that if/when we do go the botax route, sedation is available if we decide we want it for her. He gave some solid reasons for/against which made a lot of sense to me, such as:

-Sedation can help a lot if a kiddo is super anxious before and throughout the procedure
-Doing it without is a 20 minute procedure in his office versus 2+ hours in the hospital and with nothing to eat or drink at least 12 hours before
-Whichever route we choose, he'll support it and be happy to do it for us

My feeling at this point is that we'd try to do it without sedation first and see how she does. If it becomes a nightmare for her and us then the next round we'd sedate her. I'm just glad we have options and don't need to travel to Boston to have it done, which is what I was afraid might happen.

The other good news that came out of the appointment is that he thinks because her range of motion in her feet/ankles is so good, the next AFOs Hannah gets will have hinges. This is great because it means she doesn't need that added support.

I think all the work we've been doing with her must definitely be contributing to how well she's doing, because at our last appointment he thought we would definitely be ready for botax but now he said we can wait. Stretching, strengthening exercises, hippotherapy and swimming are worth their weight in gold around here! Summer weather definitely helps also. We're a pretty busy, active family.

The hard part of the visit (and there's always a hard part) is when the PT asked about our equipment needs which led to a discussion about adaptive strollers which meandered into the talk about the "w" word: wheelchair.

It even takes my breath away to just type the word so you can imagine how I'm feeling about it.

The physiatrist was quick to jump in and say that first of all, this was not something we needed to think about right now. And second of all, it might be something to consider only if we got to the point where Hannah was doing great with walking indoors or at school or short distances, but needed extra help when going longer distances and would rather propel herself versus be propelled by someone else (like in a stroller).

It all makes sense but I never in a million years thought we'd be talking about wheelchairs. For me, that feels like the last frontier, the "yes your daughter is handicapped" place. More so than the handicapped placard, the walker, the adaptive seating.

I will have to do a lot of processing, mulling over and crying about this before I can come to a place of acceptance. For now I think I'm just going to put it on the backburner and focus on what great things our girl is doing now. And hope that somehow either she can manage to make her way in the world without one, or I can figure out a way to be okay with it if she does need one.

Tuesday, June 24, 2008

Grief and loss

In my effort to share my experience as a way to raise awareness and get support for myself, I am passing this article on. It was posted on another mom's blog and does such a great job of describing both the grieving process in general but also the process as it relates to having a special needs child.

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The Impact of Childhood Disability: The Parent's Struggle by Ken Moses, Ph.D.

I was taught that the way to deal with adversity or pain was to "tough it out." If you could avoid showing the pain, then you had "beaten the rap," and dealt with the problem competently. I am a psychologist who works with people who are grieving over profound losses. Few would argue that facing the devastating and continuing loss of having an impaired child is among the most painful experiences that a person can confront. After working with parents of the impaired for many years, I have come to believe that I was given bad advice. I have come to believe that pain is the solution, not the problem.

Parents, all parents, attach to their children through dreams, fantasies, illusions, and projections into the future. Children are our second chance, our ultimate "life products," the reflection and extension of our very being. To know that a human life exists that grows from our genes, our bodies, that is a result of our existence, brings a measure of spirituality into the most hardened individual. Something basic to our sense of being is stirred when we witness the miracle of the continuity of life. What happens when this core experience is marred irreversibly by disability? How does a parent survive the devastation of a handicap in their child that shatters their heartfelt dream? How do they go on? How can they help their child, their other children, themselves?

Before I started working in this field, I noted that people who faced adversity basically became better or worse; none stayed the same. What made the difference? Some parents seem to pull their lives together around their child's impairment, others go to pieces.
Over fifteen years ago, I ran my first parent group comprised of mothers of children with special needs. These people helped me enormously as I started to answer some of the important questions that relate to coping with childhood impairment.

I began the group using traditional group psychotherapy methods, an approach designed to intervene on psychopathology. That approach did not work for a simple reason: those mothers were not suffering from pathologies, they were reeling from the impact of having disabled children. Gradually I let go of the old way of doing things and permitted myself to listen and learn from this courageous group of parents. Slowly, a pattern emerged that surprised me. It became evident that these people were manifesting a grieving process. This left me confused. It was clear that they were alternately anxious, angry, denying, guilty, depressed or fearful, but they were not internally "disturbed" people. Conversations focused on experiencing regrets, being overwhelmed, and other feeling common to people who are bereaved. My puzzlement: "Who died?" At that time, my understanding of grief was simple, concrete, and exclusively tied to death.

What followed was a remarkable process. The group members struggled with a number of concepts that led us all to some powerful contemplations about parental grief. Is it the loss of a "normal" child? Is it the disruption of one's "normal" lifestyle? Is it the sense of shame or humiliation that is experienced with family, friends, or other peers? Is it the profound disappointment that some experienced with the ineffective responses of their ostensible support group? We might have shared such thoughts endlessly, until I formulated a key question that helped to bring these diffused feelings and thoughts into focus. It came out innocently enough: "Think back to when you were anticipating the birth of your child. Who (or what) was this child to have been for you? What followed was a remarkable outpouring of poignant, anguished human sharing that, to this day, serves as the foundation for understanding and working with parents of impaired children.Parents attach to children through core-level dreams, fantasies, illusions, and projections into the future. Disability dashes these cherished dreams. The impairment, not the child, irreversibly spoils a parent's fundamental, heartfelt yearning. Disability shatters the dreams, fantasies, illusions, and projections into the future that parents generate as part of their struggle to accomplish basic life missions. Parents of impaired children grieve for the loss of dreams that are key to the meaning of their existence, to their sense of being. Recovering from such a loss depends on ones ability to separate from the lost dream, and to generate new, more attainable, dreams.

As disability bluntly shatters the dreams, parents face a complicated, draining, challenging, frightening, and consuming task. They must raise the child they have, while letting go of the child they dreamed of. They must go on with their lives, cope with their child as he or she is now, let go of the lost dreams, and generate new dreams. To do all this, the parent must experience the process of grieving.

Grieving is an unlearned, spontaneous, and self-sufficient process. It consists of states of feeling that provide the opportunity for self-examination, leading to both internal and external change. The grieving states that facilitate separation from a lost dream are as follows: denial, anxiety, fear, guilt, depression, and anger. The word "states" is used instead of "stages," to emphasize grieving is not a step-by-step process that evolves through discrete stages. This depiction of what a parent goes through is a presentation of theory, not irrefutable fact. It is meant to help people find their own ways of dealing with the unspeakable. I look at it as a map, not a recipe. A recipe tells people what to do if they desire a particular result. A map, on the other hand, is one person's partial impression of reality that can be used by another to help them get to where they wish to go.
When theories of grieving are used as a recipe to produce acceptance, two false premises are inflicted on parents. The premise that grieving should move through a specific order is flatly inaccurate. A consistent pattern is not evident in people dealing with loss! Worse, when people believe that they are supposed to grieve in a certain way, they often end up thinking they are doing it wrong. Secondly, the concept of acceptance is totally unfounded. In almost twenty years of working with bereaved people, as well as dealing with my own losses, I have never seen anyone achieve acceptance of loss, only acknowledgement. Belief in the concept of acceptance leads parents into feeling like failures for not being able to attain it. Any use of grieving theory as a recipe is strongly discouraged.

Though the feeling states of grieving do not adhere to any strict order, there is a loose pattern that can be detected. Denial is always first, but may reemerge again and again, as often as the parent needs to experience it. Anxiety generally follows denial, but it can follow other feeling states as well. It is not uncommon for two or more feeling states to be experienced at the same time. Different families are more or less comfortable with showing certain feelings while discouraging others. In short, each person who goes through the grieving process experiences each of the feeling states, but does so in their own unique manner and order.

It is clear that this spontaneous, unlearned grieving process is central to the well-being of the child and parent alike. It is the only way that one can separate from a lost cherished dream. Many people do not make it. They have their dreams shattered by disability and collapse emotionally under the assault. Resisting the grieving process, they hold feelings in, blame self or others, become embittered, dependent, or even bizarre in their interactions. They can range from the selfless crusader to the deserter, from the alcoholic to the workaholic, from the outrageously high strung to the person who barely moves or talks. However they manifest their stuckness, these are the people who have become worse, not better, in response to loss. These are the people who could not or would not experience the feelings of grieving. Many of them resisted the process because their subculture (their family, neighbors, church, schools, and friends) sent out a consistent message: the feelings of grieving are not acceptable! Others foundered because they were stuck emotionally before they had their impaired child. Regardless of background, people become worse if they resist experiencing and sharing the spontaneous feelings of grieving. Each feeling state, no matter how negative, serves a specific and helpful function. To separate from a lost dream, one must experience and share denial, anxiety, fear, guilt, depression and anger in whatever order or manner the feelings surface.

The Feeling States of Grieving

1. Denial. People who deny are considered stupid, obstructionists, dull or deliberately irritating by many who have to deal with them. None of that is true. Parents of impaired children manifest denial as a normal course of trying to deal completely with loss. It is impossible to live life fully while maintaining an awareness of the awful things that can happen to people. Most people routinely shield themselves with such thoughts as "The terrible things that happen to other people can't happen to me, because... “

This system works fine as long as nothing terrible happens, but when it does, no one is prepared to deal with it. This is where denial in the service of grieving comes in. Denial buys the time needed to blunt the initial impact of the shattered dream, to discover the inner strengths needed to confront what has really happened, and to find the people and resources needed to deal with a crisis for which one could not be prepared.

2. Anxiety. When a person loses a dream that is central to their being, they are forced to make major changes within themselves and within their environment. To deal with having an impaired child, parents go through dramatic changes that affect their attitudes, priorities, values, and beliefs, as well as altering day-to-day routines. Such changes require a great deal of energy. Anxiety mobilizes the energy needed to make these changes. Further, it gives focus to that energy so that the changes can be actualized. Anxiety is the inner source of the need to act.

Anxiety is generally seen as hysterical, inappropriate, and unacceptable. The culture's message is clear. As a rule we advise anxious people to "calm down," to take medication, or to use alcohol as a "solution" for the "problem" of anxiety. These unsolutions keep the parent from changing and often make things worse for all concerned. Realities must be faced, stressful as they might be. It does not take long for most parents to become aware that they, not some professional, are their child's medical, educational, and therapy managers, even though they may have minimal knowledge of these areas. That alone should drive home the urgent need for energies to be mobilized and focused by the crucial feeling of anxiety.

3. Fear. As anxiety mobilizes people to deal with change, fear is a warning that alerts the person to the seriousness of the internal changes that are demanded. One's sense of balance and order are dramatically challenged when one confronts a meaningful loss. The parents experience the terror of knowing that they will be required to change on a fundamental level, against their will, with full understanding that the process of internal change is very difficult.
Significant losses produce a profound sense of abandonment and vulnerability. We have a number of sayings to cope with this level of fear, e.g., "It is far better to have loved and lost, than to have never loved at all." Each person must find their own words to confront the sense of abandonment and vulnerability generated by a significant loss. Most parents experience the fear of vulnerability about having more children after they have had an impaired child, or about "over-protectionism," the gut-wrenching fear of permitting their impaired child to do anything that feels risky. Given the ways that this part of grieving is manifest, it should not be difficult to see that fear is the medium that encourages the struggle to reattach, to love again in the face of a loss.

4. Guilt. Parents of impaired children manifest guilt through the normal course of grieving and are often criticized for doing so. Guilt is a feeling state that has become so identified with being neurotic that people feel guilty about feeling guilty. Since sharing such feeling often evokes negative judgments, it can be difficult for a sophisticated parent to talk about guilt freely. On the surface, guilt-ridden people may appear not only neurotic, but superstitious, ignorant and primitive. They are often viewed as unpleasant, uncomfortable people to be with and therefore are dismissed or treated harshly by friends, family, and professionals.
Generally, parents of impaired children express guilt in one of three ways. One way is by telling a story that explains how they are responsible for their child's handicap. Their story is often accurate and, on the whole, persuasive. The current emphasis on the prevention of birth defects has brought many parents to feel that they caused their child's impairment. The issue is not the logic, but the feeling of guilt. Another way that guilt is manifested is in the conviction that the child's impairment is punished for a past inappropriate thought, feeling, or action. One of the more common "guilt thoughts" is regretting the pregnancy sometime during gestation. When something goes wrong after that thought occurs, "it's all my fault" becomes a natural outcome. Lastly, guilt can be expressed through the parent's belief that good things happen to good people, and bad things happen to bad people. Because parents have an impaired child, they must be bad people. Because they have an impaired child, they must be bad people and consequently feel shame and guilt. How can such painful explanations of tragedy be useful to bereaved individuals? Simply by being explanations. Guilt "explains" the unexplainable.

Human beings began to question the "why" of things from very early on in their lives. What are the rules which govern the way of things: cause and effect as well as right and wrong? A most important "why" concerns how one's "right" or "wrong" actions effect one's life. What difference does it make that a person is moral, ethical, legal, caring, ambitious? How is it that one does or does not influence the events of one's life? Some of us found early and easy answers to these questions and have not considered them since. After a loss, such questions cannot be answered in an ordinary fashion. Rather, they must be addressed through the kind of grief-related struggles addressed here. When people confront a loss, the beliefs they held regarding cause and effect, right and wrong, and their impact upon life are deeply shaken. The order of things is totally upset when an innocent child suffers. The parent experiences deep pain, pain that can be used to reorder the rightness of the world. Guilt is the feeling state that facilitates this struggle to reorder. Basically the guilt-ridden person is saying that they are accepting responsibility for everything. It feels better to do that than to believe that they have no influence on anything! Guilt, in this sense, helps one to redefine the issue of cause and responsibility in the light of loss.

5. Depression. A common response to loss often is characterized by profound and painful sobbing. Parents report that at times it feels as though the tears will never stop. There is a rest, but then for no apparent reason, waves of despair and anguish wash over the parent once more. Between the tears, one can sit alone, staring silently. Those periods of silence can last well beyond the periods of tears. The thoughts of depression take over, thoughts like: "What's the use of trying, it's all over," or "Nothing I do matters, because nothing will change what has happened to my child!" Depression is subtly rejected and judged as pathological by much of our culture. When people display such feelings, they are often told to "cheer up", given medication, or offered distractions. Such responses are inappropriate, for depression is part of normal, necessary, and growthful grieving. It attends to another aspect of a basic human struggle that loss stirs.

As we mature, we develop and modify our definitions of the following words: competence, capability, value, and potency. They are words of profound personal significance. They are the criteria that people use to decide if they are OK or not. What criteria does a person have to meet to feel like a competent parent, a capable worker, a valued friend, or a strong person? Each person determines these standards privately, even secretly. When parents are confronted with an impaired child, whatever definitions they held for competency, capability, value, and potency usually no longer apply. How does a mother feel competent when she has a retarded daughter? She can't use the measures of her peers, like having a daughter graduate from college, or become homecoming queen. What is the worth of a father who cannot "fix" what is broken in his impaired son? Out of this struggle of defining one's worth come the frightening feelings of helplessness, hopelessness, and haplessness. Faced with loss, a parent feels unable to act effectively (helpless), unable to imagine that things will ever get better (hopelessness), and unable to believe that their lives are touched by good luck (hapless).

Such feelings are terrifying for both the parents and those around them. For that reason, it is hard to see that depression is a normal and necessary part of the grieving process. Depression is the medium that helps parents come to new definitions of what it takes to be a competent, capable, valuable and strong people, even though their child has impairments that they cannot cure.

6. Anger. Anger, for many people, is the most disconcerting of the feeling states. It too is a natural and necessary part of the grieving process. Parents feel anger at the harm done to their child and the shattering of their dreams. When one encounters a significant loss, it is likely that one's internal sense of justice is severely challenged. To continue to trust in the world, one must have a sense of justice that confirms an orderliness and fairness to the way the world works.

A parent can righteously demand to know why he or she has an impaired child: "Why me, why not you!" Implicit in the question is the notion that there must be good reason that such a thing happens to one parent and not to another. A parents'concept of justice, like value and worth, is another unique product of that individual's thinking and development. When confronted with the traumatic loss of a dream, that internal sense of justice is violated. Crying out in the face of injustice, the parent develops new ways to look at justice in the world. "What, after all, is fair, if this can happen?" Anger is the medium through which a parent redefines fairness and justice. It integrates new beliefs within the deepest emotional levels of the grieving parent.
Unfortunately, anger is an emotion that is actively rejected by the culture at large and by people closest to the parent. The angry parent experiences rejection by others, confusion about feeling anger and acting out the feeling, the feeling of being out of control. All of this makes it very difficult for this important feeling to run its course.
Anger also poses other dilemmas. Unlike the other feeling states of grieving, anger is directed toward someone or something. Who (or what) is the object of parental anger? This question deeply distresses most parents, because the honest answer is often so troubling that many people avoid asking themselves the question. The unacceptable answer, of course, is that the impaired child is the object of anger. After all, who has entered this parent's life, disrupted it, caused immeasurable pain, and drained the parent's time, energy, and money.
Most parents were raised to believe that feeling and expressing negative feelings about one's child is taboo. "The child never asked to be handicapped, let alone to be born. How can one be reasonably angry at this child?" If the child is blameless, than it must be unreasonable to feel anger toward the child-even though one does! The conflict between what parents feel and what they can permit themselves to express can cause a return to denial. Another outcome of this conflict is that the parent can displace the anger onto others. Spouses, non-impaired siblings of the impaired child, and professionals are all possible targets of this displaced anger.

When considering the feeling states of grieving, especially the feeling state of anger, logic and reason are irrelevant. Where is the logic behind cursing a rug that one has just tripped on? What is the purpose of kicking a flat tire? What good does it do to admonish anyone after they have already done the wrong thing? Expressing simple anger clears the way to getting on with the task at hand. Expressing anger opens the way to address the meaning of justice (though enacting angry behavior sidetracks the parent from the task at hand). While there is no logic, there is purpose and function to the expression of angry feelings. As events occur that violate one's sense of justice, the outrage must be expressed. Those expressions help to redefine one's concepts of fairness and justice.

The parent of an impaired child separates from dreams that were shattered by impairment through grieving. Denial, anxiety, fear, depression, guilt, and anger all emerge. If they are shared with other people, these feelings help parents grow and benefit from what might be the worst tragedy of their lives. Grief must be shared deeply and fully until the underlying issues are revealed. The reopening of these issues changes the parent's world view. New perceptions of themselves and their world serve as a solid foundation for coping with the disability and for personal growth. Yielding to the grieving process helps parents find the inner strength and external support needed to face profound loss; to mobilize and focus the energies needed to change their lives; to reattach to new dreams and loves in spite of feeling abandoned and vulnerable; to redefine their criteria for competence, capability, value, and potency; to reassess their sense of significance, responsibility, and impact upon the world around them; and to develop new beliefs about the universal justice system that makes the world a tolerable place to live, even though terrible losses can occur. The culturally rejected feeling states of denial, anxiety, fear, depression, guilt, and anger may be used in surprisingly positive ways when the feelings are fully shared. Perhaps you can see now why I think that experiencing and sharing the pain is the solution, not the problem. Through my life I have experienced many losses. For many years I dealt with these losses by stifling feelings, workaholism, toughing-it-out, and innumerable other ways that kept me from experiencing what had happened to me. I became one of the "walking wounded" that I was committed to helping. Ironically, it was not until I myself had a child with impairments that I began to take the advice that I had so freely given to other parents. I started to yield to the natural and necessary process of grieving. Like everyone else, I discovered that only now am I growing with the impact of the loss. I will continue to grieve and to grow as my child and I develop and experience new losses and new strengths.