There was soooo very much excitement and energy around Enler making his appearance into the world, when I saw and then heard Graham saying something like, "oh goodness, does he have a bruise on his face?" In the businesses of all that was happening the physicians and nurses took a look and said something to the effect that, "it may be a bruise or a birth mark." While the whole process of checking him, weighing him, cleaning him and taking care of his Mom went on, it became clear that it was a birth mark of sorts. I could tell that Graham was worried and Juliana was concerned and I shared the worry of something unknown. I was so caught up in the miracle of it all, and the fact that with the confidence Juliana had in her doctors, the feeling of it would be okay, surely was okay.
Honestly, writing now at 6 months all I can think of was what a perfect baby he was. What a miracle and how lucky we were and what a wonderful delivery team Juliana and Graham were. Seeing all of him and holding him he was that...our perfect miracle.
I was so in awe of the birth and of Enler and happy when we kept getting scores and reports of his perfect health. So the birth mark was something that would be explored and understood and dealt with at a later stage. It would take some time, a few days, before we got all the information to realize that he had a Port Wine Stain. So we had a name of what it was and gradually the whole story of what his journey could have been and what it would be.
When his Grandpa John and I talked about it he said that he knew that the birth mark was of concern when he first looked at his grandson. His thoughts were immediately for Juliana and Graham that they not feel disappointed that he had it and that it took away from him. He also said that he wouldnt want them to worry what people would say about Enler. In fact, all along he has said to leave it (except for the medical reasons) because it was a part of him.
The face that Juliana and Graham presented to the world was the face of a beautiful and completely loved baby boy. Their words of adoration, and their posting of the photos of Enler on Facebook made such a huge statement: Enler is so much more than his birthmark. He is a joy and he is ours and we love him.
ReplyDeleteIt was a perfect introduction!
It may seem strange to those who have never known someone with a challenging physical appearance, but getting to know them makes it fade into the background. It becomes a part of who they are, just like John said, and not a distraction. My son's hemangioma was small, but it still received comments and questions. We answered openly and matter-of-factly, letting them know that this was just another step in the journey. My son was soon able to answer the questions himself. Can you just hear a sweet little 2 year old saying "hemangioma?"
My son had about 10 laser treatments. We were fortunate to have a doctor who was one of just a few in the country to have a laser machine, and the knowledge and courage and skill to pioneer this new field. The treatments became routine: topical anesthetic, funny glasses to protect the eyes, and all that attention! Wearing a bandaid was even cool, with all kinds of cartoon characters on them. It's been 17 years since then, and I'm confident that Enler's experience will be professionally and compassionately managed.
I admire the attitude that the whole family has. It will be the biggest factor in how Enler copes with all that comes his way.
I love you all,
Margie
Thank you for the beautiful comment Margie. Your words mean so much and we really appreciate you sharing your story.
ReplyDeleteMiss you.
Love,
Jewel, Graham and Enler