Rare Disease Day 2015

Merriam-Webster defines rare as a :  marked by unusual quality, merit, or appeal :  distinctive

b :  superlative or extreme of its kind. 

Dictionary.com defines it as "usually excellent; admirable; fine."

Discovery.com states that it takes millions of years for crystals to form in nature and only a fraction of those will ever be found, mined, and cut into gemstones. 

The rarest gems tend to be valued the highest.  We can search nature, and may never find one of these rare, precious stones.  In fact, wealth used to be measured by the amount of these precious gems that one possessed.  

The first time I held my precious baby in my arms.
She was 5 days old. 1/20/03 

When I began the journey of motherhood, you could compare it to a fisherman.  Here I was, dragging my net, and when I finally opened an oyster, it held inside that rare, precious pearl. 

My rare gem came in the form of my Ashlynne.  Twelve years ago when she was born with a rare disease called Ichthyosis en Confetti, I didn't realize the wealth she would bring to my life.  I thought of all of the things that she might not be able to do, rather than all of the things that she could do, and all of the greatness and awe she would bring into my life.

Fewer than 20 people are documented to have this particular type of Ichthyosis.  Ichthyosis is rare enough, and Ichthyosis en Confetti has been considered one to be extremely rare.  Many people tend to be leery of things that are rare.  "Fear of the unknown" is a common phrase most people are familiar with.  But through life experiences that I have learned from being Ashlynne's mommy, I have come to embrace rare. 

Today is Rare Disease Day.  And today, I am celebrating rare.  Rare is beautiful.  Rare is anything but typical.  Ashlynne is rare, but that's not what makes her extraordinary.  She is special because she is Ashlynne!

Alone we are rare.  Together we are strong!

Celebrate rare with us! Celebrate You!!!

Tiptoeing around words...

"Oh she's gorgeous!" and "Oh... how precious".  As a mom, you know the difference in these two phrases when they are used in reference to your baby.  Especially when you have a child with a visual difference, or special needs.  And of course, I was and sometimes still am, super sensitive to the differences in wording.  Looking back, I almost feel sorry for the people that were caught off guard, and didn't know what to say.  They were trying to be polite.  But it was there.  The akwardness they felt, and them choosing their words carefully when seeing my baby for the first time.  But "It's ok", I wanted to say.  "It's ok that you don't know what to say, I go home every day and tell her how beautiful she is."  Yes, she is precious, and she's beautiful too!

Ashlynne with our friend Bailey, who is an
absolute beauty, inside and out

Of course my friends and family knew before they met her that her skin was going to be a little redder than most, and that she would have dry flakes of skin, and gobs of lotion on.  People were nice enough to let each other know, so they weren't caught off guard, and they were prepared.  But what was I supposed to do, put a sign on the front of her stroller to advertise to strangers before they approached?  To warn them of my child's visual difference?

It used to hurt so bad, cut deeper than they knew, to hear people tip toe around their words when asking about Ashlynne's skin disorder.  "JUST SAY IT!!", I wanted to scream.  Just ask why she's so red, ask why she has such dry skin, ask why she has little skin flakes on her clothes, ask about the lotion!!  It's not like I haven't noticed myself.  Sometimes I just wanted to yell at people and ask them to stop treating it like the giant elephant in the room.

I've heard it said before that the quick look aways hurt more than the stares, and the comments.  I had never thought about this, but once I did, I realized how true it was.  How hurtful it can be that people would rather look away and pretend she doesn't exist rather than just ask tactfully what she is afflicted with. I want to show her off to the world, because I am proud of her.

She was, and still is, my miracle baby.  When I look at Ashlynne, or any other child with Ichthyosis, or any other visual difference for that matter, there is nothing to me that is more beautiful.  Some of them are lucky to be alive.  They are fighters.  She came into this world fighting.  First, fighting for her life, and now fighting for a "normal" life.  And they have now taught their mommies and daddies, and siblings to be fighters as well.  And so much of their beauty lies in how much they are teaching those of us around them.  They are teaching us patience, acceptance, and understanding.  They are teaching us to look deep inside ourselves and reevaluate what we thought was important.  They are teaching to really, REALLY look at what it means to be beautiful.  They are true INSPIRATIONS!!

My goofy, funny, beautiful, precious daughter

My daughter has a shock of golden blonde curls, and strikingly blue eyes, and lips that are oh so kissable.  But these are just her physical features that make her beautiful.  She has compassion, a sharp sense of humor, she is a good sister, and a great friend (just ask her best friend).  She loves babies, and animals, and sports.  She likes to pull pranks, and tag me in silly Facebook posts, and fight with me about clothes.  She likes to do chores to earn money, and she has started to love cooking.  She is patient, and loving, and FUNNY!  And all of this, is beautiful to me, and to many others that have been blessed to know her, or any other special needs child.  Special needs kids tend to look at the world in a different light.  The slower pace of life helps the people closest to them "stop and smell the roses".  To me that is beautiful AND precious.  So I no longer choose to take offense to the careful wordage people have used.  You're right, she is precious, and so many other things.

I'm close enough to perfect for them

Sometimes, to call me a good mom would really be stretching it.  I slip, and have potty mouth moments in front of my kids, I laugh at inappropriate jokes in front of them, sometimes I'm even the one cracking them.  I break my own rules, I over sleep, I forget what day it is, I boycott cooking on Sunday nights, I forget to sign homework, I sometimes make them pack their own lunches, and sometimes I have my lazy days where I don't want to play outside.  On some of my days off, I'm lucky if I shower by the time I have to pick them up from school.

I won't even try to deny the fact that I have bribed my 3 year old with candy.  I have had countless moments where I had to eat the words "my kids will never do that", and I have been that mom with the screaming toddler walking through the mall.  I have also, in some of my weaker moments, given in to them because it was the "easier thing to do" and to keep them from a meltdown.  And, I have most definitely been embarrassed.  In one of my most embarrassing mom moments,  the baby pool was actually shut down and drained because my child used it as a toilet and shared his digested corn with all of the other swimmers.

But I try my hardest.  I do whatever I feel in my gut is the best decision at the time.  Sometimes it's not the right one.  That's the beauty of life, you live and learn.  And you know what?  So far, that's always good enough for them.  They have nothing else to compare me to, so in their eyes, I'm the best mom ever!  And I try my hardest to live up to the image they have of me in their eyes.  They're alive, and healthy, and well taken care of.   And I know that I'm at least doing an "ok" job, when at the end of the night, my nine year old boy wants to cuddle with me for the last few minutes before bed time.  Don't get me wrong, he would NEVER do this in front of his friends, and he will probably want to strangle me when and if he ever goes back and reads this, but I'm still his safe place.  And that makes my heart happy.

My dad loves music.  And I, ever his sidekick growing up, became a huge music fan myself.  There is a song by Alabama called "Close Enough To Perfect" that I have always loved.  Because if you really listen to they lyrics, it doesn't have to be just about a romantic love, it really could be about anyone you love. None of us are without fault.  And this song hits the nail on the head.  We are full of faults, but we are all worth loving.  Even us moms that mess up from time to time.

But even with all of my faults, my kids know I love them.  I tell them every chance I get. I know no matter what, I always have to keep trying to show them.  Because I will be the standard by which they parent.  Good or bad.  If nothing else, they will know what not to do because of my mistakes.  And I let them see me make mistakes.  I screw up, and they need to know that.  They need to know that it's ok to not be perfect.  It's ok to have squabbles with people you love, and resolve them, and at the end of the day, you still love each other.  I am not scared to let my children see me mess up, because even with all of my faults, I'm still close enough to perfect for them.

Here's to you mom, because a Facebook status update just wasn't enough!

My mom's birthday was Sunday.  For fear of getting in trouble (yes, I am still a kid at heart) I won't tell you her age.  But I have been thinking these past few days about just how much our relationship has evolved over the past 12 years or so.  Becoming a mom myself has made me appreciate her so much more, and has made me realize the selflessness with which she raised my sister and I.  Here are a few of the "AHA" moments I had with my mom.  Some firsts, but certainly not lasts.

The woman who has always held my heart in her hands

*The first time I looked into Ashlynne's eyes I finally understood just how much my mom loved my sister and I.  I finally understood what a mother's love was all about.

*The first time I was able to call her a friend was a moment I never saw coming.  My mom had fairly high standards for us girls, so there were just certain things growing up that I couldn't talk to her about.  Things I did that I wasn't necessarily proud of, or things I knew she would disapprove of, I never felt I could talk to her about.  I was so scared to let her down.  But as an adult, that relationship has changed to the point where I can talk to her about anything, my kids, my finances, and even the talk I NEVER would have had with her 13 years ago... sex.  Yes, when my mom and I finally breached that subject I knew our relationship had evolved into a grown up one!

*The first time she cried to me.  Finally, after all of the support she had lent me over the years, the countless times she held me when I cried, I got to return the favor.  And while it hasn't happened nearly as many times as I have cried to her, I am glad to know that she knows she can count on me as much as I have always counted on her.

*The first time I drank alcohol with her.  I can't describe how guilty I felt!  I felt like I needed to hide my beer!  But the fact that she had a wine cooler in her hand eased my nerves some.  This was a night on her patio I will never forget.  But don't worry, she stopped after two.  She had reached her limit!  Just and FYI for those of you who have never witnessed it, she's very giggly!!!

*The first time I confessed to her some of my teenage transgressions.  What surprised me was that she wasn't nearly as surprised as I expected.  Although we did have some good laughs, there are still some things I kept to myself!! (She doesn't need to know EVERYTHING! And I'm sure she doesn't want to!)

*The first time I realized just how much I had hurt her with my words and actions as a child.  Moms are human too.  And contrary to popular belief, we aren't super human.  Looking back, the way I treated my mom in some of my more rebellious moments are some of my biggest regrets.

Some day, I will have to help care for her, just as she did for me when I couldn't care for myself.  This will be a first I will not be looking forward to, however, I will step up and do it without hesitation, just as she did for me when I was a child.  I hope that I am able to do it with the love, care, and patience that she has always, and still continues, to show me.  They say life comes full circle.  Well, here's to many, many more years, and many more firsts before the circle is complete!  Happy Birthday Mom!!!

My bonus child

My "Bonus" kid 

One of the most challenging relationships I have in my life is the one with my step son.  When I say challenging, I don't mean bad.  It's just that as a step parent, I am constantly walking that proverbial "tight rope" or walking a fine line that I have to be careful not to cross.  It is, thus far, the hardest thing I have done in my life.  But it isn't without reward.  I love this little boy with my whole heart.  Logan came into my life when he was only 9 months old.  For a while, until his dad and I married, I was kept at arms distance from him, and it was hard to form a close relationship with him.  As time has progressed, things have gotten so much better, but it can still be hard.  And when things get challenging with him, my mind floods with all of the things I wish I could just explain to him, but don't, because at six, he would look at me like I grew another head when I was done with that conversation.  And also, I don't think it's anything he could begin to understand until he is a parent himself.  But if I could sit down and have that conversation with him, here is a bit of what I might say:

Son,

I never planned to have you in my life.   When I pictured my white picket fence life, I will be honest, you were never a factor.

I guess you could say you were a pleasant surprise in my life.  You didn't get to pick me, but I got to pick you.  When I chose to be with your dad, I chose to be with you as well.   And I don't know if you would have picked me, but you're stuck with me.

I do love you, so so much.  And I do consider you one of my kids.  But it isn't the same.  And it isn't the same for you either.  I wish I could say it was, but it is a different kind of love.  I didn't feel your every move inside of me.  I didn't know you before you ever took your first breath.  I didn't get to watch you take your first steps, or see the love in your eyes the first time you said "Mommy" and know that it was meant for me.  In fact, I know that love is meant for someone else.  I know that it isn't me you want when you are sick, or hurt. I know that when you come to our house, it is your dad that you're excited to see.  I have heard the comments about things being better at your mom's house, and I'm sure for you, they are.  And even though it stings a bit, they should be.  Because nothing is better than your own mom.  And I'm not her.  Nor will I try to replace her.  Just as I know my other childrens' step mother will never replace me.  I would never attempt to hurt your mommy like that.  There would be no greater pain.  I know my place.  Believe me, there are several people that like to remind me that certain decisions are up to your parents, and I know by they way they stress that word, that I am not included in that equation.  Don't get me wrong, sometimes it hurts.  Yes, I can admit, that as juvenile as it sounds, that even as an adult, I do get my feelings hurt.  Just as I'm sure that unknowingly, I will sometimes hurt your feelings.  Most days, I hope for the best, and pray that you just won't end up resenting me, but what I really WANT, is to some day have you look at me as someone you know you can trust, and someone you can count on, maybe even call me a friend.  Your triumphs, and all of your victories, I will have to cheer from the sidelines while your "real" parents get recognition for raising such a good young man.  By the same token when you mess up, (and you will, because you're a kid!) I won't get blamed!  You will be with your mom every Mother's Day, on your Senior Recognition Day, it will be your mom you give the rose to, and it will be your mom you dance with on your wedding day.  And I will cheer silently from the sidelines, still wanting you to succeed, and watch you soar.  And I will hurt for you when you hurt, knowing that more than likely, it isn't me you will come to for comfort.  But just know that if you do, I will be here waiting with open arms.


Cinderella ruined it for us step moms.  Because of that story line, step mothers have been viewed as evil for years now!  And I, like many others out there I'm sure, are extra conscious of making sure that we aren't viewed as the "evil step-momster".  There is this impression that we treat our children so much better, and the step child is pushed to the side and pales in the light of our natural children.  This is not true.  Most step parents I know spend time trying to make sure that they don't do this, in turn, walking on eggshells, or actually catering to the step child.  Every other weekend, we have to try to win you back over.  And by the time you finally warm back up to me, and start letting me back in, it's time to go back to your other home.  However, I know by catering to you, this isn't doing you any favors.  I tell your dad this, and I tell myself this countless times.  But sometimes I still find myself doing it despite my own advice.  I'm human.  I mess up.  And if you bear with me, I will bear with you, and we will figure this out together.  See, this is new territory for the both of us.  I have never been a step mom before, and you have never had one.  So this is a journey we will go on together, and we can learn from each other.

But just because it is a different kind of love, and a different relationship, doesn't mean that it isn't a special one.  The beauty of it is, there aren't any certain boundaries we have to have in our relationship.  We get to define it on our own.  So let's make it a great one.  Only you and I can decide what our inside jokes are, or what our special memories will be.  Just as I said earlier, you are a bonus kid in my life, and I can be a bonus mom for you.  And I promise to keep trying my best, as long as I walk this earth.  Because after all, that's what moms do for their kids.

Love,
Mommy Cora