Yesterday was Seth's 6th birthday. As I wished him Happy Birthday as he climbed into bed with us that morning, I hugged him. And as I did a wave of emotion suddenly engulfed me and it was all I could do not to cry.
Six short years have gone by and during that time Seth has undergone fifteen or so treatments. His birthmark has faded significantly although it comes back after long periods of no treatments.
He had a treatment in September. Shortly after school started. I was a little apprehensive about how the other kids would react to the spots of the treatment. I talked to Seth before he went back to school and told him to tell a teacher if anyone said anything that hurt him or made him sad. After he got home he told me he had a happy day. He climbed into my lap and we snuggled. After a couple of minutes he told me that a boy had asked him why he had spots on his face. I asked him what he said. Seth said he didn't say anything he just turned around and walked away. He then looked at me and said "Mommy, why do I have spots on my face?" Right then it dawned on me that I had been so preoccupied with making sure that the other students understood why Seth has spots on his face that I forgot to explain it to Seth. I also realized that he probably had no clue what he looked like to other people. I pray that he could always have that innocence. Even though I know it can't be.
My heart aches for him today. I was standing in the shower & suddenly I started sobbing. My body shook & I fell to the floor of the tub. Begging God to keep his life full of love.
I am so used to seeing Seth with his birthmark that I don't even notice it. But I see how other people look at him & hear the remarks. Mostly innocent ones. I know that he doesn't hear them or have any idea what they mean by them. But they cut me like a knife.
I want to protect him forever. To steal him away so that one one can ever hurt him. So that one day when he does understand the remarks, he is not there to hear them.
But I know this can't be so.
His birthday brings back all the emotions. That first night in the hospital after he was born. Sobbing in bed by myself holding him tightly. Wondering what I had done wrong. The nurses and visitors noticing but not wanting to say anything. The barrage of questions we all had. But most of all "Why?"
I ask God that ever so often. Why? Why him? What plan could you possible have in store for him, that is so important that you have to mark him? Why must my child live with the stares, glances and remarks?
I can't begin to understand. I hope that someday God reveals his plan to me. I hope it is worth it.
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2 comments:
Hi Jessica,
I have never left a comment for you, but occasionally read your blog. Just wanted to say that I think Seth is adorable in the picture below. He seems like such a smart little guy too from that post. I am sure God does have big plans for him! I also understand that it must be hard for you as a Mommy. I completely get how you feel about wanting to just protect them. I worry about this too, just not the same issue. We deal with comments like "is he really 5?" or "He's so tiny..." I just wonder why stupid people open their mouths :)! Not nice, I know, but oh well.
~Jeni
I came across your blog form your etsy store. First off, your products are wonderful. You are an an amazing woman with all you do -- very inspiring!
Second, this blog really hit home with me. I have two little boys, * and 2 who were both born with what is called Ocular Albinism. If you google it, you can read more about what it is. i knew that if i had boys, there was a 50/50 chance my boys would inherit this eye disorder. To everyone around them, they look like normal kids however there are limits for them as to what they can do such as sports, seeing distance and one day, having to face that they will not drive. Kids don't understand why they don't see the things they do, why their eyes move back and forth from the Nystagmus that goes along with this, etc. If you look at my boys (www.stachomas.com) you will see that they look like normal kids but having to tell my boys one day that they can't drive still kills me. What teenage boy is going to accept that? I have 20/20 vision and feel that I should have been the one to have these issues and not my boys. i pray that they will come out with a cure for OA soon enough so that they boys can see everything the way I do. My dad also has OA, has never driven a day in his life however; he has been successful as a computer programmer and has a large family that loves him unconditionally. I pray that my sons will see my dad and realize that no matter, they can be anything they want to be and do anything they set their minds to and be successful. I too have had the moments of weakness where I fall to my knees and ask God why. Right now we don't have answers but one day we shall all have those answers when we meet in heaven. I pray for you and your little man and hope that he will be a confident little boy and realize that he is amazing and beatiful no matter what!
God bless - Jennifer
(fellow Etsy friend at Penelope & Buster)
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