SAM!

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

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

seeking guidance

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

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

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

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

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

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

Cut me some slack

Today after I picked up the girls from school, I was driving out of the parking lot when I heard a whistle and saw two people running toward me, trying to get me to stop. I immediately realized that I had forgotten to put Hannah's walker in the trunk of my car before driving away.

This is the second time it's happened in a month.

I also ran over her walker a few weeks ago because I did the same thing at home, but that time I put the car in reverse and just drove right into it.

I think I must be losing my mind. Or just acting like the frazzled mom of a special needs kid who has 2 other kids and a part-time job and is trying to keep her head above water.

Either way, when I put the car in reverse to retrieve the neglected walker today, I was totally embarassed and said sheepishly to the person who had flagged me down, "I can't believe I did this AGAIN." Her reply, "First of all, she NEEDS her walker and second of all, someone could come around the corner and pull right into that spot and run it over." (Little did she know it has already survived one such encounter). It was hard to tell if she was truly giving me a hard time or kidding around and lately, I take everything personally (being super-sensitive seems to be a major by product of sleep deprivation, at least for me). I kind of think it was the former, because as I drove away, I felt like an even bigger heel than I already did.

I know it's completely ridiculous that I can't learn my lesson about putting the walker in the car. I also think it's a symptom of what's going on in my world right now. I've been trying hard to be gentle with myself and not beat myself up over this and my many other shortcomings. It would be nice if others could cut me some slack as well.

Reclaiming winter

I think I have a post from last winter with the same title, posted after we took the girls skiing for the first time. Well, we went again this year. Actually, we went cross-country skiing one weekend and downhill two weekends later. Cross-country we did on our own and downhill was with the help of the local adaptive skiing program, which totally rocks. Both activities were so much fun and made us yearn to go again. We still need to figure out the equipment thing and we realized that at this stage, both girls are such beginners that they really just need some time to stomp around on skiis in the backyard without us shelling out a whole bunch of cash for lessons. We just need to get some gear for them. Of course for Hannah, going downhill is much easier if she has the adaptive equipment offered by the program, but even for her, just getting her on her feet on skiis is exciting for her and a good experience. It's nice that at this early stage, both girls are almost equal in their abilities (except that Hannah can't stand on her own unless her poles are firmly planted in the snow)! So there is not a great sense of someone being left behind. I love that there are so many options for Hannah especially with downhill as she gets older. If she is interested and into it, she can probably be an independent skier some day, with outriggers or a snow slider. Exciting to think that we might truly be a skiing family, despite Hannah's CP.

So if you're a snow-loving family and have a kiddo with a disability, don't despair. It's amazing what opportunities are out there. Where there's a will,there's a way!

Mean kids

I have often said that I worry about what Hannah might face when she gets older, because I know kids can be mean. But up until today, I have not witnessed this meanness and have instead been pleasantly surprised by most interactions we've had with other kids. I have come across curious kids, interested kids, kind kids, kids who are oblivious to her difference, kids who are drawn to her because of it...but I had not yet witnessed what I would classify as a mean-spirited kid.

The girls' preschool is an early education/intervention program which is housed in a classroom in the elementary school. So we often encounter older kids in the hallway or on the school grounds. Depending on the time of day, sometimes we can get caught in the middle of a major traffic jam of kids walking in the halls. Today as we were leaving their class, another class of older kids (probably around 8-10 years old) was in the hall. There was the usual gawking at Hannah that happens, especially because when there are that many other people around, Hannah gets really distracted and tends to stop in her tracks and stare at them like a deer in the headlights. But then one boy leaned into his friend and said, "Hey, look at THAT," as he kicked at her walker wheels with his foot.

I looked right at him and said, "This is Hannah." And he said, "What's THAT THING for?" in a loud and not-so-nice voice. And I said, "It's her walker, and it helps her to get around." And he said, "Why does she need THAT?" and at that point, the snake of kids he was a part of continued on its way and he was past us and walking down the stairs so I didn't answer. I also didn't answer because I thought I would not be able to do so calmly anymore, as his nasty tone and inquisition was starting to get on my nerves.

In so many other ways and a different tone of voice, this kid's questions and comments would not be so unnerving. But it was the WAY he said it that really got under my skin. I had the urge to smack him upside his head. I also wanted to know where his teacher was, and why she wasn't stepping in to use it as an opportunity to teach some manners and respect for differences.

This little interaction soured my whole day. It made me frustrated with Hannah as we were leaving the school and she was refusing to walk because she didn't want to go home. It made me frustrated with her again tonight when she was difficult to stretch. And it made me frustrated with myself because life is so crazy busy right now and I feel like we have so little time to do for her what we need to help her progress.

So there it was: our first mean kid.

I'm sure it won't be the last.

Conversations you don't hear in every house

I was helping Hannah practice walking with her forearm crutches tonight (which she asked to do) when she turned to me and said, "Mommy, I just REALLY want to walk without any adult's help. I have a walker and crutches and glasses, and it's taking SO LONG for me to learn how to do it on my own." And then she added, "And my belly hurts, too."

I'm so glad she added the belly hurting part because it made me realize that for Hannah, at least right now, she sees her limitations as a frustrating obstacle like a belly ache, and she doesn't attach all the other emotional baggage to it that we (the adults in her life) all do. I know this won't last forever but I'm glad that for now, this is where she's at with it.

It's so tempting to respond to these comments by saying, "Well, if you work hard enough, someday you WILL walk on your own without anyone's help" because this may not be true, and it won't be because she didn't work hard enough. So I try to tell her that we are working on getting her stronger and more independent using her walker and then maybe someday, using crutches. And I acknowledge that it stinks and is frustrating that she can't do it on her own right now.

I so admire her four year old approach to her disability, because from the outside it does not seem to cause her to act victimized, defeated or discouraged by her limits. It is simply the way it is for her. I want to try to be more like her.

It's the little things

Watching Hannah move through different stages of development, these little things pop up now and again that remind me of just how much of an impact her CP has on every aspect of her (and our) life. And a lot of the time, it's these little things that can really get me down much more so than the big picture.

The big one lately is shoes. Shoes are a MAJOR issue in our house. First of all, finding shoes that can fit over orthotics is no small feat. And then there's the fact that sometimes very independent four year olds don't WANT to wear their orthotics. So it's nice to have a pair or two around that can work without them, for those hanging around the house days when we just want to take a break from strapping her feet into the hard plastic forms. But that's another feat of the feet because Hannah's are so narrow and small, and because when she walks, she doesn't plant her feet firmly on the ground and they just kind of float in space sometimes. So if a shoe is not totally snug on her foot it falls off. And if it doesn't have a good tread on the bottom she slides all over the place. So most slippers are out.

When you look around at the average preschooler (at least in our neck of the woods, anyway) one of the most popular shoes are those really cute kiddie mud boots with fun prints of animals or other cool things on them. So what does Hannah want to wear? Without her orthotics, they are a total no-go because they fall off. And with orthotics, she can't fit into mud boots at all. So in the land of "mud season" we are very ill-equipped.

Then there's dress-up shoes. All kids love to play dress up and tromp around in their parents' shoes. Hannah just can't do it. She tries, oh she tries. She has tried on almost every pair of my shoes in an effort to find one that will stay on so she can walk around in them like Isabelle does. But she can't keep them on her feet long enough to give it a try. We also have a box of plastic dress shoes B got at a yard sale. Silly, fun high heeled shoes that are made for kids to play with. Again, Hannah can't keep a single pair on her feet. Thankfully in this box of shoes is also a pair of red sparkly buckle shoes just like Dorothy's in the Wizard of Oz. Without orthotics they fall off, but with orthotics they fit well enough that she can stomp around the house.

She is NOT happy at all at having to wear her orthotics with these sparkly dress up shoes. I don't blame her. It sort of defeats the purpose. Dress up is all about becoming someone else and leaving your regular orthotic wearing self behind. But today I convinced her that the best way to experience the magic of these shoes and keep them on her feet was to wear her orthotics, and how wonderful that the shoes fit with them on. She begrudgingly agreed and now wants to have them on 24/7.

Today it's shoes, tomorrow it will be something else. These little things are hard in a big way.