"Stop staring at him!"

I want to scream it to the world every day. To the man in the trucker hat at the gas station. To the little black lady at the grocery store. To the lady who has perfect hair at the nail salon. To the little boy wearing Spiderman swimtrunks at the waterpark.

"Just stop staring at him!"

I haven't spoken about this before online.
So this is new territory. For most of you.
But, it is something that is frustrating me to my very core. And I feel like I need to voice my feelings, as well as just ask for prayer.

If you have been hanging around these parts very long at all, then you know this little guy.

Meet Keaton. My 9 year old (in 3 days). Counting the months I held him in my belly, I have known this little person for close to a decade. Unbelievable. A decade full of precious laughs, smiles, and tears.

And my precious Keaton is perfect to me.

So my heart breaks for him. Because of this.

You see, Keaton has Vitiligo....a skin disorder which basically boils down to the fact that some of his pigment cells don't produce pigment, therefore leaving portions of his skin white.

This disorder is not harmful; it is purely a cosmetic issue, which we praise Jesus for every day.


But my heart breaks for my child. Because he has an imperfection....that is only skin deep.

I hate it when people look at him and their eyes drift immediately to his leg. I hate that people stare. I hate that kids ask him if he has a disease. I hate that sometimes adults are even more cruel than that. I hate it that in his prayers he asks his Jesus to take the spots away. I hate that his child heart is fearful that the spots will spread to his face.

I hate feeling like Keaton was cheated. Like I was cheated. Because I know that as I type this there are mothers who don't know if their children will even live through the night. And that there are mothers who are grieving the fact that their children will never live a life that will be filled with what we all call normal. And that there are mothers whose hearts are heavy because they haven't yet been blessed with a child to call their own.

But I can't not voice my feelings any longer. I feel selfish. And insensitive. And greedy. But I made a promise to always be transparent and real on this blog, and I'm lying if I say that I'm okay that Keaton lives every day with questions as to why God made him have spots. And I'm lying if I tell you that I'm okay with being the mom of a kid with spots. I'm not.

It hurts that my child is the one that others stare at.
It hurts that the doctors can't tell me what causes it.
It hurts that there is nothing we can do.
It hurts that there are kids who are cruel enough to exclude him because he is different.

I've cried many a tear over those darn spots. I hate them. I have screamed "Why?" more times than I can count.

Because those spots matter.

They matter to my baby's heart. They hurt his feelings. They hurt his esteem. They hurt his heart.

And I'm doing everything I can to reassure him of his Father's love for him so that those darn spots don't hurt his faith.
Because when you are 9, God is supposed to answer prayer.
And so far, God hasn't answered his.

Because the spots are still there. Every morning, they are still there.

My bitterness is still fresh. My tears still flow freely. And my frustration and anger is still very close to the surface. I'm doing my best to not show Keaton my hatred of his spots. To make our lives normal. To pretend like the stares at the swimming pool don't bother me. To not weep when he prays to Jesus that He won't let the spots get on his face.

But, I ask you for prayer. Prayer for healing, sure. But even more than that, prayer for Keaton's heart. That he will find himself drawing close to the One who created that perfect skin of his. To the One that knows those spots inside-and-out. And to the One that loves Keaton more than even this mama does.


Cathy said...

I will, my friend. I'll pray.
I'll pray for all these things you asked.
I'll pray that he will come to see himself how God and those that know and love him see him...beautiful.
I'll pray that he comes to realize that the other boy that has spotless skin, has something else that makes him "different".
I'll pray that he comes to believe that we're all different, in some way, with some kind of "spots".
I'll pray that his little heart will be protected from those who will be cruel.
I'll pray that he will always know how much his Father in heaven loves him and that he's special because God made him...and God doesn't make mistakes.
I'll pray for your mama's heart that hurts for him, that you will feel God's comfort.
I'll pray that you will have wisdom in how to handle it.
I'll pray that you will continue to entrust these precious babies to Him who created their inmost beings and knit them together in your womb and Who offers that special gift of salvation to them.

I love ya for opening your heart to us. For being honest. I just love ya to pieces.

(There's a book that Max Lucado writes that is for kid's called, "You Are Special" that relates to this. GREAT book.)

Lori Motl said...

I will pray for you both, too, my sweet friend. I want to write eloquent and encouraging words to you as Cathy did, but I'm too tired I can't think straight. I still wanted to you to know that I am praying for you and your precious boy's hearts tonight as I lay my head on my pillow.

Jim said...

Here's a Grandad "Poohpa" who hurts and prays for Kea daily, and for his mom and dad and brothers, that God will grant all that is needed in healing, in comfort, in reasons why, and in future unknowns. It is true that such trials can be a source of strength to those who bear them, and I know you already know that. I pray that Kea will grow to understand it, too. Do you remember this poem I wrote many years ago?

Trial cuts a river channel in each life.
With each stroke of the bruising pick, With every scoop of anguish borne,
The place scars deeper, hinting at an open wound that will not heal.

Oh, how can such scarring and marring of life's land ever bless, or bring refreshing rest?

But yield, oh life, to this great pain,
For through the channel will flow God's rain.
Fountains of His love spring forth to flow abundantly,
Directed through each scar to quinch
The thirsty world that waits,
The depth of the wound controls
How much may flow, or how little may go.

Then miracle of life, the living water borne through the scars, also cleanses and cools the pain.

Sing out for joy, oh life, as suffering digs deep into your soil,
For deeper wounds bring more abundance of life's needed nourishing balm.

Amb, only God's knows the great blessing which Kea may give the world out of his "wounds". I do know that God's design for each is perfect, though affected by worldly sin's curse in the most innocent of babe's, and He will provide only the best of His will and purpose through it all.

Thank you for your heart. With such, Kea has "a lot" going for him to find God's road of joy and peace.

I love you.

buscher3 said...

Prayer is powerful, my friend. But even more powerful will be the moment when Keaton realizes that those spots are part of what makes him Keaton. They are part of the uniqueness that make up who he is. So both silently and with him in your prayers, pray for that...for a change of perspective.

My son has a hemangioma on his head - a strawberry birthmark. These are the ones where periodically you'll see kids with the purplish marks covering their face. It'll grow until he's a year or so and then stop and gradually fade away. Even as a baby...a 3 month old at that...that's the first thing people notice about him. Now granted, right now it looks like he scratched his head. It's still quite small, but it's growing, and I know that fear in your heart that it will spread and that fear that people will be so cruel as to point, stare, and ask bluntly right in front of him. I totally understand where you're at. But at the same time, I have to CONSTANTLY remind myself that one day, that little mark on his head (which may turn into a large mark on his head) can serve as a testimony that my little boy can share - that Jesus cared enough to make him different and special, and that just because he may look different, he's no different on the inside.

mimi said...

I will be praying for your beautiful boy and your family! One of my bff's has vitiligo(on her face)she has often shared with me what she goes through. I have to tell you dear friend, last night I was writing a blog post in my head very similar to what you just wrote(not about V., but something else my boys struggle with physically)The stares and comments I get just about put me over the edge yesterday...and then I read your post. Your son is gorgeous.Truly gorgeous. I hate that people are so ignorant...and it IS mostly the adults. Ugh. I'm going to email you, but something calmed me yesterday. The thought that the Lord chose us to be their mothers...He chose our children for us! He knew we would be understanding, loving, strong warriors..for our children. And you are a wonderful mother to a special and beautiful boy!!

Lindsay said...

Amber, I wept right along with you as I read this post. People can be so cruel. Can't begin to presume why God allows certain trials. Still know He is good and all wise and powerful. Praying for a host of things for you but mainly healing of body, mind and spirit. BTW, love the comments you've gotten so far. Would especially love to meet Jim Dad one day.

Mich said...

I love that little boy more than words can speak... I am going to say I kind of understand his pain right now too. When I was just a little older than he was, I prayed the "why?" prayers over and over because I was stared at constantly and not made perfect by the world's standards... I still have people who notice my little "hump" of grief at times. I wish I had insight and encouraging words, but all I can really tell you is that it has the ability to make his faith stronger and his heart bigger, because he looks at the world through different eyes.

I love you and my heart hurts with you. Praying for one of my favorite little boys ALWAYS!!!

Jo said...

Amber, I feel your pain so much! As the mom of a son that is "different", I can totally relate.

From the time that Richard was born (a miracle in itself), I knew that he was "special". Of course, I didn't realize the extent of it
until a few years later.

He had to endure the looks, the hurtful comments, and even some physical abuse, almost every day, especially during school days. It is so sad, how some kids can be so cruel! Some of the hurt, I never even knew about until long after he had graduated from high school. He told me about some of it later and said he kept it to himself then (which pains me even now), just to keep me from knowing how bad it was.

Although he's grown now, it still bothers him some because he is "different". Not because people stare or make comments (which, to my knowledge, no longer happens), but because he does and always will have to live with his impairments, and it the fact that it does impede him at times. He has turned out to be a fine young man, and is always willing to help people when they need it.

I'm proud of Richard, for who he is, as I know that you are proud of Keaton. Their disabilities (or differences) are part of them, but they do not define WHO they are.

Keaton has an amazing future ahead of him. He is bright and he is a caring individual. You and Kirk have done a wonderful job in raising your boys, and so much good is ahead for them and for everyone they touch.

I love you.

Nina Diane said...

my daughter grew up with a girl who had that. And when she would come over, I would tease her and say please let me see that perfect skin! She would laugh. I would always tell her that she was so lucky that God gave her that perfect skin that doesn't produce pigment. It always made her laugh and she told me I wish everyone could think like that. She has grown up to be such a beautiful girl.

Carpoolqueen said...

I know where you are and have prayed the prayers you pray.

My hope has always been that through the pain in our lives, that God would be glorified, for in THAT, there is consolation. It doesn't always take away the pain, but it gives me reason for it.

lisa@littlesliceoflife said...

Oh, Amb. I'm in tears. I love that sweet boy and I love you!

I share your bitterness that God seems to say "no" an awful lot when we ask for healing.

And you are not selfish or greedy for wanting good things for your child. You're a mom. That's your job.

I have an awful habit of telling people I'll pray for them...but I know I won't because frankly, God and I are still not on speaking terms right now. It just seems like the right thing to say and I always have good intentions. You see, I'm still bitter. It's my problem, not God's. I'll find my way back eventually and when I do, Keaton is on the top of my prayer list!

Tiffani said...

Oh my dear sweet girl,
I'm not sure what to say that hasn't been said here...except that God rejoices over Keaton (and you) w/ singing (Zeph. 3:17) and that I believe every single joy, struggle, pain and hurt is purposeful and multifold.

I believe that this is strengthening you as a Mama and allowing Keaton to learn some tough lessons early on but that he'll be a PRECIOUS gift to some other child/friend one day who feels like the "only" one in his/her situation and Keaton will be a blessing.

I love you for being real, I love your heart, I love how you love those boys...I love you for being my friend.

I am praying for you all!!

Jennifer said...

Oh Amb...this just breaks my heart!! I have spent alot of time with you guys this summer and have grown to love your precious boys as much as my own!!

Not only will I pray for God's will for Keaton and his healing, but I will also pray for peace for both of you!! It is so hard when your child hurts and the normal "band-aid" won't fix it!!

I love you guys very much!!

Glo said...

Oh Amber! I just cried reading what you typed about your little guy. Keaton is a cute little boy, as your other 2 are. I am so sorry that ya'll have to go through that. I will definitely pray for you and Keaton. I am not poetic, or have words of wisdom like dear ole Jim-Dad, but I DO know how to pray. Alison is right by saying that Prayer is powerful! So, that is what I will do for you and your family.

Jessica said...

Boo for spots. I don't have any profound words of wisdom for you, but if it helps, I don't think it's selfish or greedy or insensitive of you to be not okay with it. I don't think I would be okay with it. But on the other hand, your little guy is one cute little dude. and looking at the handsome little face with that smile, makes up for any ol spots on his leg. I will pray for his spots to go away.

Stephanie said...

I love you Amber, because you are real. Not made-up or phony. Just really real.

You are a special person and a special mom.

Jackie @ Our Moments Our Memories said...

Oh, sweet Amber. Your mother's heart just shines through here - the pain you feel for your little one, but the pride and love you have for him too.

It struck me that you said you feel selfish...insensitve...greedy...for expressing this. Oh, girl. I think we've all felt like this at one time or another, because we can always look at someone else's situation and think...they have it worse, so I shouldn't feel the way I do. It's taken me a LONG time to get over feeling like that, because when it comes down to it, each of our situations matters to God. He created us to feel, and so it's only natural that we hurt over things like this. So never apologize for saying what's on your heart. I'll be praying for you.

And that precious boy? He IS perfect. Yes he is.

Gretchen said...

So my refrain after the tears have dried is, "You're amazing because of who you are and Whose you are."

You know this. Keaton knows this. Praise God that he's raised in a family who knows this.

But it's still hard.

Hugs, friend. God, I know it's hard.

Elizabeth said...

It's hard enough that most of us have our own insecurities, but I've learned that it's far worse when it's our children. We become so maternal when we know there are things about them that may cause them pain or heartache, and each kid does. Whether it a physical trait or something else, it's hard to learn to be content with how we were made. It's hard to teach and model, too.

I hope Keaton reads this one day and knows how much you prayed and hoped for him. He is a great kid with a really special mama.

Becca~TimeWellSpent said...

Amber, what a sweet boy you have and I know he hurts when others do and say mean things. I'm so glad he has you as his mom! Your heart is tender to him and I have no doubt the Lord will give you wisdom to help him through how he feels and give him tools to deal with others who aren't sensitive. I'll be praying for both of you!