I have a friend whose infant daughter just got a DOC band. Until I had a niece who also required one two years ago, I thought those were "helmets" for babies who had flat spots on their heads. Having now known a few mothers whose children required them, I flinch at my own ingnorance.
In any event though, now being four weeks and one day on the other side of Sadie's surgery (not that I am counting or anything), as I hear my friend go through the worry and grieving process knowing that her daughter will be wearing the band for months and months, full time, I have had lots of memories of when Sadie and her birthmark were very new... and overwhelming. Sadie's mark was much smaller than the DOC band, but she too was going to be wearing it "all the time" and it garnered lots of comments by observers. And we didn't know if it would last a year, less, or more, or what we would do to remove it. I certainly don't feel like we spent five long years worrying about it, but it was an underlying concern, to state it mildly.
I told my friend to make sure that she takes pictures of her daughter, for her benefit and for the benefit of her five year old daughter who needed her parents to model that this was not a tragedy. I remembered that there were a few weeks when Sadie was a newborn when I didn't take any pictures, when the birthmark was growing every single day and I was terrified. My parents visited one time in that period and my mother took my father's digital camera and insisted that he take several pictures of Sadie. She had funny faces in each of them -- and just looking at them now makes me recall that she always had so much personality. She then printed them out and gave them to me in a small photo brag book album. "Take pictures of your beautiful daughter!" she admonished me. I did again, and again, and again! In the very room where I am typing this, we have 27 80-page albums for Sadie's five year life. I am definitely not short on pictures of her life.
It is a different kind of challenge that I have faced this week, since Sadie's derma bond (layer of superglue that was applied on top of her suture in lieu of stitches) peeled off last Friday. Along with the derma bond, off came the thin red line of dried blood from the incision as well as the purple-ish hue that used to be her surface birthmark. Kind of like when you first take a cast off your arm or leg and the underlying skin is pale and almost new looking? We were stunned, Sadie's birthmark is all but gone. And there is no "angry red incision" that we had been expecting to be dealing with for months or even a year.
And my, has the camera been snapping. I can't get enough pictures of it, to be candid. I can't stop looking at the pictures. I can't stop looking at both cheeks and seeing how similar they are now. It is stunning to see her face without that birthmark. Sure, from day to day you can see more or less of the scar or the surface birthmark. But most of the time, in natural sunlight, there is nothing there. For the first time in five years, one cheek looks like the other.
This makes me want to laugh and cry at the same time! How silly am I? I mean, I am completely neurotic here. But it is so weird to feel this way. And Mark and I take great lengths to try not to express this in front of Sadie... but she will catch us looking at her, eyes kind of squinty in deep concentration, wholly focused on her cheek. "Stop looking at my cheek" she will say. She never said that, ever, in the five years that she had the birthmark... when every child and adult was looking at her cheek! She never ever uttered stop, then. Now she is older. And it is gone.
I am not sure what to make of all of this.
So I am thankful that the days pass, and with each new day we see so many changes happening right outside our doors. Every morning and every night after dinner we check the progress of the red bud tree we have in our backyard. The purple flowers on each branch were quick to pop out and had the most lovely hue, but now the little tiny heart shaped leaves are replacing the flowers. It is still stunning to watch, with our bright sunshine and recent rain, the tree changes before our very eyes. It has been a great study for all of us. We look forward to the next change, but are also taking the time to talk about the beauty in what is there right then. Living in the now.
Leave it to a five year old to teach a nearly 43 year old some important lessons.
Check out my 8 year old daughter's story below (she also came up with 5 illustrations to go with the story). She wrote it for a PBS contest and it recently was highlighted in the morning announcements at her school. I'm proud of her. Isn't it great to have kids who really do put things in perspective!
ReplyDelete"Linear Morphea: How it Changed Me for the Better
I have a medical issue called linear morphea. It is a rare autoimmune disorder. Linear morphea causes dark spots on your body. For some people it can affect the muscle under the skin. Mine is on my right leg and on part of my belly. It does not hurt me.
I do not remember when I found out that I have linear morphea. My mom thought I had a rash when I was six. She was worried about it so we went to the pediatrician. We saw three pediatricians that day! They did not know what the rash was. Eventually, a dermatologist figured out what was going on.
I do not like having linear morphea because when I go swimming or have shorts on people always ask me what are the dark spots on my leg. I used to tell them what it was, but then everyone started asking me about it. That really annoyed me. So I started telling people to stop asking.
Another thing I do not like about linear morphea is that I used to get IVs every Thursday when I was in kindergarten. I also used to get my blood drawn every week. Now I get it drawn once every four months. I have one dermatologist named Dr. Vernon and one rheumatologist named Dr. Buckley.
Linear morphea has changed me for the better. It has made me realize that people who are different are still good people because it is not their fault that they are different. They are still good people inside. So please remember I told you about linear morphea, but that is not the most important part of this story. The most important part of the story is that people who are different are really the same inside."