Baby Raymee Girl- One Year Older, Our Journey with BPES
It’s late. I can’t sleep. Something keeps running through my mind. May 9. My dear Raymes, you are turning four?! I can’t believe that little nugget that you were has turned into such a burst of personality and sass. You have no idea what you have done for our family. You bring so much joy to your brothers lives. You have taught them tenderness, patience, and a side of them they never would have known without you.
There is something so special about this little girl. She is magnetic. To say that she is favored would be a true understatement. She is the right amount of sass with mixed with a unmeasurable amount of love and tenderness. She is my shadow, my firecracker.
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.
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What a wonderful post! Both my girls have BPES – as does their dad, his dad and their paternal great grandmother. While there may be rough spots in the road ahead (children can be mean) just keep reminding this sweet gift from God that she is beautiful and He makes no mistakes. ❤️❤️
Really lovely reading your blog my husband and three children all have this syndrome. My 15 year old daughter is begininning to research for her own information and we came across your lovely blog, your daughter is gorgeous and we are very lucky to have special strong children , would love to hear from you. Sara x
Its so great to hear from someone else that has this in their family! I am so glad you found me! Have your husband or children had surgery?
Its so nice hearing other stories. My daughter was born 5 months ago and just found out 2 months ago she had bps..
Id love to keep in touch. How is your daughter doing? Is she going to have surgery?
I LOVE your post!! I’m from the UK. My daughter is 16 months and has BPES. Your words ring so true for me. She had an operation at 4 months, at that young age it was hard for me to know how BPES might effect her, it felt like such a big thing. Fast forward to now – she’s feisty, has the biggest heart and is a force to be reckoned with, it’s such a small part of her and I’m confident it won’t define her. Thanks for sharing your story xx
This is awesome! Yes my daughter too is so very feisty! Thank you for reaching out!
Thank you for sharing your story. My 8 month old son has BPES and one of the things I have found most helpful is seeing that other kids with this condition grow to be healthy, normal, rambunctious kids. Your daughter, and family, are beautiful
Hello hope you are doing well
I have BPES as well only learned that now while checking online eye makeup for ptosis ?
I am 27 years old ?
Wow, so happy to find your post today. We are going for surgery in a couple weeks with our daughter that we adopted from China a few months ago. She just turned 3 years old. I am kinda nervous about the surgery, but feisty would be a VERY good description of our lovable Isabella too!? Your post encouraged me so much in knowing our sweet girl will be just fine. Thank you.❤️
So glad you found me too!! Good luck to you!!
Three of my four children have BPES and my oldest child with the condition was 19 before we ever had a name for why they had “little Asian eyes” as my son called it. It’s been enlightening to learn what it is and especially the other possible side effects for daughters born with the syndrome.
Thank you for sharing
Hi! Thanks for reaching out! Its so nice to hear from other families with the same situation.