Thursday, January 24, 2008
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.
Posted by Billie at 10:15 PM