Thursday, January 31, 2008

Tuesday, January 29, 2008

A Breeze on My Face

You know those blue skies I was talking about? The sunrises and sunsets? The sand slipping through my fingers? The breeze on my face?

We have had some of those around here lately.

Over the weekend Eden was playing under my bed (her idea, not mine) and doing such great tummy time, pushing up on her arms so effortlessly. Then, during PT on Monday she did the very best floor sitting she has ever done, using a SWASH orthoses.

Today she was doing so well sitting on the floor independently with her legs crossed and propping with her hands. She was really sitting there. Holding herself up and weight bearing with her arms.

This is all pretty awesome to me. I was beginning to imagine it might never come.

It's hard sometimes, balancing vicariously in that place where you don't want to give up hope, but you are so afraid to hope.

Well, here we are. Eden is prop sitting on the floor for a good minute at a time completely on her own, and for up to 15 minutes with a little support from the SWASH. There is nowhere to go but forward.

How's that for a nice fresh breeze?

Thursday, January 24, 2008

It's not Holland

Have you read the piece Welcome to Holland, by Emily Perl Kingsley? If you haven't, you should. I have come across this piece many, many times, and recently it has shown up in the comments section of my blog a few times.

When I first read it, back when H and E were still in the NICU, I cried, and I loved it. It really helped me to understand, that although things had not turned out as we had planned, there was still so much to be thankful for. Even now, when I read it, I can appreciate it...especially the ending when it says, "if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland." I think that is true and poignant.

But, over the years, as I have read it and thought more about it, I have come to the conclusion that it just doesn't capture the reality of having a child with a disability, at least not for me, and I am sure for many others. It is almost as if the author is saying that although the experiences are different, they are equal. In many ways I suppose they are. For example, the love that we feel for our children is no different. The fact that we make sacrifices, and put their needs first is no different.

The problem with the analogy of Holland is that I feel like it really minimizes the blood, sweat, and tears, that go into caring for a child with a disability. We didn't end up in Holland instead of Italy. We ended up in the wilderness.

There is so much hard work that goes into having a child with cerebral palsy. It takes strength on many levels, emotionally, spiritually, and especially physically. A year ago, Eden was 18 pounds. Now she is 23 pounds, and while still too small, it is hard on me. I don't have the stamina to tend to her physical needs that I did a year ago. She is always on the move and I have a hard time keeping up with her. I am constantly hunched over helping her walk, lifting her into and out of equipment, in and out of the tub, holding her up so she can see what is going on. More and more, John is having to do most of it because I get so tired so quickly, and it makes me sad. Not just sad, but afraid...because I will only get older, and she will only get bigger.

In addition to the physical demands, there is so much more. There is a constant fight for resources. A never ending quest for information. Nothing is ever easy. There are IEPs with dissenting reports, bills that come in the mail that require hours on the phone, struggles with getting equipment covered by the medical insurance, keeping track of therapy, appointments, and recommendations. It never ends.

This is not Holland. It's the wilderness. We thought we were going to Italy, and instead ended up here. We have to rough it. We have to find our own food and shelter. We never know when we'll end up having to cross another river, or climb another mountain, or when another severe life-threatening storm might blow in.

People come to visit us in the wilderness, and they think they could never live like we do. But if you hang around long enough, you may learn what we have learned. In many, many ways the wilderness is even more beautiful than Holland or Italy. When you have to work so hard for what you have, you appreciate it that much more. Some days are hard and we have to seek shelter, but on other days there are clear blue skies. There are awesome, mind-expanding sunrises and sunsets that bring tears to our eyes. While everyone in Italy is enjoying their posh hotel rooms, shopping for high fashion, and marveling at the architecture, we are enjoying the way the sand slips through our fingers, or the feel of a soft breeze on our faces.

We can appreciate the calm after a storm, even knowing another storm may be brewing.

Tuesday, January 15, 2008

On a Roll

And today makes three days in a row:O)

No pee though, which I guess is kind of unusual??? But hey, I'm totally okay with pee in the diaper, and poo in the potty. Makes it a heck of a lot easier...

Oh, and Holland has completely lost interest in potty training. She was pretty jealous of all the excitement with Eden the past two days...but today she seemed over it. Don't know what we'll do with that one.

Sunday, January 13, 2008


Eden went poop in the potty!!!!!!!!!!!!!!!!

I am so excited I can barely contain myself! Lucky for me there are about 1,000 of you out there to share my excitement with!

She told me three times today that she needed a "diaper change." I could tell she had to go, so I tried twice to put her on the potty. The third time, just after dinner, she actually said "poo poo potty, let's go, RUN!" We had a huge potty party after, which she thought was AWESOME and very "fun." She was VERY proud of herself, and needless to say, we were very proud of her!

So, Eden...this is for YOU! (Thanks Melanie and Jacqui for the idea:) Holland and Eden could seroiusly watch this 100 times!)

Update (1/14): She did it again today by golly! On the first try!

Friday, January 11, 2008

A Little Pick Me Up

And short but sweet...

Friday, January 04, 2008


So, this is what we did on the very first day of 2008.

I know, I know. I really should get over myself and stop my whining!

Thursday, January 03, 2008


Just a shadow of what I was,
Less than that of what I thought I could be.

This is something I jotted down on a piece of paper when the girls were in the NICU. It was stuck in my head for a long time. I thought I was moving on, but lately it's back and I'm feeling kinda lost, and well, just blah.

I think it has to do with the new year. You know, a new year, a fresh start, and new beginning...all that jazz. I'm just not feeling it this year.

I feel like I've lost myself. Where am I? Who am I? How did I get here?

I don't like the person that I see myself becoming, but I don't know how to stop it. I'm so sad. I feel like I am carrying a huge cloud of gloom over my head. There is always so much work to be done, and I'm not good at doing any of it. I'm tired.

I think about what my NEW YEAR'S RESOLUTION should be, and the list is so long that it is overwhelming.

I need to eat more vegetables.
I need to keep up with my housekeeping.
I need to cook more.
I need to spend less time on the computer.
I need to drink more water.
I need to spend more time each day working on Eden's PT...get her in her stander, get her in the Creepster, do more stretches, more tummy time, more time in her Benik.
I need to keep up with the grocery shopping.
I need to shower at LEAST every other day...I mean, come on.
I need to quit sleeping in with the girls. If I got up an hour or so before them I could get so much more accomplished.
I need to go to bed earlier.
I need to be a better friend. At least RETURN my phone messages.
I need to answer the phone.
I need to quit procrastinating about making appointments.
I need to start thinking about preschool and researching our options.
I need to get out more often.
I need more time for myself.

I start thinking about all of these things, and I get so irritated. Who MAKES these rules? Why do I do this to myself? Why do I put so much pressure on myself to be so perfect? Why do I care so much about what other people think?

I can't do it all.

The worst part of all of this, is not all the petty things that I don't want to do, it's that I am not sure I like the sadder, more introspective, heavy-hearted person I am becoming. I long for days past, when I felt so much lighter, without a care in the world. When I could rejoice with the people in my life, and share in their happiness, rather than always feeling that stab of nagging jealousy for what I will never have. I don't want to feel this way. Will it ever go away? Will I ever feel like myself again?

My life is SO busy now. I am always taking care of someone else. Always worrying about making other people happy. I feel so guilty for the snippits of time that I get for myself.

I feel selfish for wanting so much time to myself. I feel sad, and guilty for feeling sad.