Baby Raymee Girl- One Year Older, Our Journey with BPES

Those who know us personally, know Raymee was born with an eye condition. Blepharophimosis( BPES )…. try saying that 3 times, or just typing it. Basically she was born without the muscles in her eyelids, a smaller eye opening, and Epicanthus Inversus. Basically she has droopy eyelids and the fold on her inner eye is reversed.  To be quite honest, most people that meet her think she has some sort of Asian heritage. Which is ironic. When Lance and I wondered if we would ever get a girl after having three boys I told him, if I didn’t get a girl, I would adopt an Asian one. Not a joke, I was completely serious. So, other than this eye condition, she is a completely normal girl, feisty, healthy, happy, and strong. Girl, you will move mountains.

This eye condition does not define my Raymee. It does not limit her. I believe she is stronger for it. With one surgery down, when she was only 6 months old, and a few more on the way, she has already shown her bravery and strength at this young age.

This condition shortened to BPES, it quite rare. In fact, it’s the first one our pediatrician has ever seen. However, we were extremely lucky to find a specialist, not far from us, who works with this condition on a daily basis. He is a true angel in our lives. We have been well taken care of. Yes, we… He has helped us all!

To tell you the honest truth, most days I forget that there is something different about Raymee, because in truth there isn’t. Just like her love for clothes and accessories, BPES is just an accessory to her full and vibrant life.  She has so many strong people on her side who have given her so much confidence, I wonder if she will ever even notice herself. That does not stop people from having a curious nature about her circumstance.  Her vision is perfect, she meets with her doctor every six months to check her vision and measure her eye to make sure her pupil is still at a certain measurement…. This is where I just trust the doc. Over my head.  Believe me, though, there are those times when we may get comments or stares from younger children.  This has to be the most painful of it all.  I never want her to think she is less than what she is.  She is more, so much more.

I mentioned she had surgery. She had slings put in her eyelids to help them open. Go ahead and Google that. I had no idea how intense this surgery was. She will eventually have it done a second time, and they will actually do some surgery to open her eye. There are many people that never have any surgeries and live completely full, happy, normal lives. But I decided long ago, if I could improve her vision and quality of life I would do anything I could!

This picture is one that our doctor sent as a comparison. He was over the moon happy with the results, as we. So, in a nutshell there it is. But that’s not all SHE is. Raymee loves my little pony, hello kitty, and her brothers. She loves painting her nails, getting her hair done, shopping, playing in the mud, wrestling her brothers, loving in her dog Bruin, and generally bossing everyone around, especially Bruin. She rarely gets any resistance to the latter. I might be the only one that fights her on it. I come by it rightly. You know the saying takes one to know one??

There’s another thing about this Raymee that’s got a special place in my heart. She was named after my late sister Aimee.

About 8 years ago, we lost my oldest sister Aimee suddenly. To say that losing her was hard is an understatement.  It’s the hardest thing I have yet been through in my life.  So almost 4 years ago, when I found out I was pregnant and was finally having a girl after all boys, we were over the moon! I knew then she needed a name that represented all I knew she could be.  We named her after my sister.  Raymee has been a light in that darkness for me.  She is so much like her namesake.  I truly believe that my sister had something to do with this little girl.  She is a true reminder of life’s mysteries and tender mercy’s.
My sister was strong, brave, stubborn, creative, and never let anyone tear her down.  I see all of these in my little girl.  I believe her small trials as a young girl have and will make her stronger.  At only 4 years old, she has miles ahead of her, and I am excited to see what marks she makes on the world.

 If you’re wondering why I decided to post something like this today. Well, designing, creating, and DIY, these things make me tick   They fill my thoughts. But for one very good reason.  My children.  They create a desire in me to do better, try harder.  From their examples, I have learned it’s okay to put myself out there, to try something new.  You won’t know unless you try, right? I am always telling these things to my kids, and pushing them to be better.  Why not push myself a little out of my comfort zone.  This right here is doing that.

One more reason for posting this personal part of our lives is to help even one other family with questions of their own about BPES.  This is a rare condition, one that I spent countless hours searching for information on, and coming up quite short on anything remotely helpful.  Without the blessing of an incredible doctor that has been there every step of our journey, we would still be lost.0000

One of my favorite quotes is

“She believed she could so she did”

 I don’t want my little girl to be limited by BPES.  I believe she can, so she will.  And while there are many days I’m predominantly pulling my hair out because she really believes she can, there are just as many days when I am in awe and amazed at the confidence and strength she possesses.  Like I said, she WILL move mountains.

 

My most favorite days are the ones spent on the couch, where this often demanding girl sweetly requests the ever so present cuddle time.  With her on my lap and an “I love you” in my ear, I could not find a better place to be.  I am so grateful for the last 4 years we have spent with her and look forward to many, many more.  You are my best friend little girl.

Happy Birthday my little Raymes…may you get all you ever desire.

Love,

Mom