A Letter to My Son

Heidi Ferrer Bex

Me and my angel.

(And to my wonderful friends and readers)

Bexon.

You’re three years old now and you know what crying means. You understand the concept of sad and you know what tears are.

So when your Mommy cried yesterday after we removed your medical t-shirt that you wear under your body cast for Infantile Scoliosis, you recognized my tears and said

Mommy cry.

I’m sick of casts. This one is dirty, you’ve been wearing it three and a half months. I didn’t want to upset you, so I forced a smile and you said Mommy happy. Good job, cry! Whaaaa! Good job!

And I laughed and hugged you, getting to touch the soft skin of your belly inside the rough plaster. Your sweet belly button that is always hidden by the cast and medical T.

Then I wanted to start crying again, because I am sad sometimes and I am still angry. The anger is still there, that you could’ve, should’ve been properly diagnosed and treated earlier, younger, before the malevolent curve in your small spine got dangerously out of control.

Bex cast 8

Bex in cast #8 when it was still clean : )

It is now about two weeks until our next cast trip. You are currently in your eighth cast, we are going in December for number nine. Plane rides, full anesthesia, X-rays….radiation…

One precious day of you out of the cast, where I’ll examine your spine and squeeze you all day long. Soft, squishy hugs.

This is why we aren’t traveling to see my side of the family at Christmas. We did it last year between cast trips and it was draining, it was just too much.

Each cast trip is like an emotional roller coaster. The entire week before, especially five days before travelling to Salt Lake City Utah to the incredible Shriners Hospital for Children, I am on pins and needles. I try not to have any expectations, but that has proved to be impossible for me.

My heart swells with hope. I fear bad news. I pray, pray pray that your spine has gotten even a little bit better.

I tell myself it will be okay no matter what. But I don’t really believe myself.

Why is Mommy silly sometimes on her blog? Because I’m scared. Being silly and being funny is a way to lead a somewhat normal life, to be myself, to have joy and thumb my nose at the fear. It lightens me and I hope it lightens some other people sometimes, too. It may not always be everyone’s taste but that’s okay, too.

As a friend said to my husband, about going through loss and serious health problems with our children: What else can they do to us?

They meaning life.

A big reason I started this blog was to write about Bexon’s scoliosis journey. But if I make our lives all scoliosis all the time I will stop living. And that’s not good for Bex. A depressed Mom is not supposed to be on the menu for children.

Put the oxygen mask on yourself first, right? It’s good advice in all areas of life. Hard to implement, sometimes.

I’m terrified that Bex will have to have metal rods implanted in his spine at a young age, multiple surgeries with more than a 100 percent complication rate.

I’m scared of him suffering pain, deformity. My child’s spinal condition without treatment would be worse than the Hunchback of Notre Dame. He could have died.

If we ever have to face the surgeries, I’m scared my precious boy will scream in pain that no painkillers can touch. Not for a minute, for days, for a week…I’ve read the other families’ journals and stories online. They have become my friends. It rips my heart out of my chest to think of a child suffering like that.

I don’t care if I live, in times like these. But I know I want to be here for Bex.

Live through this.

Mommy I just wanna go home….Mommy I just want to see my brother…Mommy I  just want to go swimming…I just want a balloon…

Brave beautiful families and Superhero children who face so much in their young lives. It’s not fair. There is a cure in Mehta Method casts but you must act fast, especially under age two.

I’m not selling anything because believe me, plaster casts are not giving anybody a world of profit. They’re mostly done at charity hospitals like Shriners. Surgery is where the money is.

If you’re reading this as a parent, please consider sharing Bexon’s Story of Infantile Scoliosis with your child’s pediatrician. They are the front lines and can help us stop any other kids like Bex from slipping through the cracks of the medical system.

Just click the Bexon’s Story tab at the top of this page.

Feel free to print it out, email it, Facebook it or forward it in any way. Pass it on and you will likely be connected to a chain of events that saves a child.

So I’m silly, sometimes. No apologies.

That’s why.

Dear brave Bex, my angel. This is all for you.

Superman Bex

Love,

Mommy

Share
This entry was posted in A Very Worthy Cause, My Dark Places. Bookmark the permalink.

14 Responses to A Letter to My Son

  1. Danielle says:

    I love your letter! Of course, it made me cry though. :)

    I’m crying for your son, that he has to go through the casts, and possibly surgery. I’m crying because in a small way, I know what he’s going through. Of course, in many ways our stories are very different.

    You see, I have scoliosis too. Though unlike your son, I was fortunate enough to be diagnosed as a young teenager. One day, in 6th grade gym class they were doing scoliosis screenings. I knew I’d have it, so I was dreading the screening. Even at 12 I knew it was going to be the beginning of a long process; I was right. Throughout my junior high years I was supposed to wear a brace (not a more permanent cast thankfully) during the day, usually for about 12 hours each day. It was miserable. It was uncomfortable, sometimes it even hurt. The worst part for me though, was the social factor. It was mortifyingly embarrassing for 13-year-old me to be in a constricting brace that was very visible, even under the baggiest of clothes.

    To make a long story short, though it wasn’t life threatening, by avoiding my back brace at all costs my curve ended up getting bad enough to need surgery. My top curve, at it’s worst, was around 57 degrees. (The bottom curve always stayed in the high 30s to low 40s I believe.) So, in 2005, the year after I graduated, I went to the hospital on an early February morning. The surgery lasted most of the day, during which I needed at least three bags of blood (2 of which I donated to my own self, I thought that was pretty neat). I was in the hospital for about a week after. I had to do physical therapy to relearn to balance and build back some muscle. I lost a lot of weight and slept a lot afterward.

    I’m not going to lie to you, it DID hurt, a lot, but my point in all of this is to say that surgery was the best choice I could have made. I don’t have to worry about the curve getting worse. Sure, it does restrict my movement, but I’ve got GREAT posture. Sure I’ve set off the occasional metal detector (haha), and my x-rays look funny, but it’s ok. I don’t know exactly what the process would be for your son, I don’t know if the surgery would be a “fix” for him, or if you would need multiple surgeries, but I just want to let you know this about surgery: Though it’s a process, there’s a light at the end of the tunnel, so to speak. There comes a point where it’s not even a factor in your life any more. It’s like having brown hair, or a strangely long second toe. It’s a part of you that you don’t really think about.

    Thank you so much for sharing your story! Your son is in my thoughts and prayers. :)

  2. Heidi Ferrer says:

    Danielle,

    I love your comment and thank you from the bottom of my heart for sharing your story.

    Yes, Bex may need final fusion surgery in high school, also, and not to make light of that in any way shape or form- I know it’s very serious- but that one surgery would be much, much better than beginning growth rods at age 4 or 5, for example.

    As I understand it, they can only do about 5-6 lengthenings- every six months a new surgery- and then they usually have to fuse. As you might imagine, fusing a spine while there is still so much growing to do leads to many problems.

    The chest cavity is shortened and parts of the spine begin to spontaneously fuse sometimes- it’s a litany of dangers. We will do surgery if it’s the best option, of course, though we are going to go to the mat to try to avoid fusing before his heart and lungs have full space to grow.

    I think you are beautiful and brave, thank you so much for reading! Oh, I should mention that Bex will hopefully be switched to a removable brace by this summer, after one more cast. The casts are specifically de-rotating his spinal rotation, the corkscrewing or twisting, which the braces would not have been able to do with aggressive progressive childhood cases of IS.

    Most likely he will wear the brace all through childhood, 23 hours a day. Had we gotten into casts about two months earlier, he may have only had to wear the brace for one year and been completely cured by preschool. I just want to clarify that for any parents reading.

    I’m not looking forward to him hating the brace, as I’m sure he will at least part of the time. What an incredibly difficult time for a young person to have something that makes them feel different. Many parents say the brace is harder than the cast because he will know it comes off! And while lighter, it is apparently hotter temperature wise.

    I’m so happy to hear that you’re doing so well and please stay in touch. Thank you again.

    Warmly,

    Heidi

  3. Tasha says:

    Heidi,
    HUGS to you my friend. What a lovely letter to Bex. You are an awesome mom to that precious little boy and have done and will continue to do everything in your power to help him. And SPREAD awareness!
    Unfortunately I have walked in your shoes down that road and am still trying to find our way. Ryan’s journey is far from over, although I don’t think he will ever have surgery unless that little spine does something crazy. And you know what…..that is what is so scary about Infantile Scoliosis to me…….every little spine is so different and we just don’t know for sure what his spine will do as he grows.
    Loved this blog post Heidi. You keep writing however you see fit and helps you get through this journey.
    I am here for you in spirit, online and always on the phone to talk.
    Love, Tasha

  4. Heidi Ferrer says:

    Tasha,

    Thank you so much! I just read your blog today and as always it lifted my spirits.

    Hey, anyone who’s interested- my friend Tasha is a loving, fun homeschooling Christian Mom of twin boys in Texas, one twin (Ryan) who has IS like Bex. I will post this again soon in the body of a blog post, but check out Tasha’s blog – she is crafty unlike me : ) And she is a super positive person who makes me smile.

    http://www.TheFontenotslife.blogspot.com

    Love ya Tash!

    -H

  5. Dotty says:

    Dear Heidi,

    You are breaking my heart and filling me with joy at the same time. I am so impressed with your strength and honesty and, of course, your humor. Write whatever you feel, whenever you feel it and to hell with the despots. You said it lady. This is for Bex and nothing else matters. And on that note, is there a way I can put a tag on my blog to help raise money for Infant Scoliosis? And let’s get all the other Babble blogger nominees on board too. Am I crazy? By the way you and Bex are in first place and isn’t that the universe saying, “Hells ya?” I think so. Much deserved awesomeness!

    xxoo,

    Dotty

  6. Heidi Ferrer says:

    Dotty,

    You’re making me smile! Hells to the yeah! : )

    Of course I am not worthy to hope for first place, but I do feel like it is these children’s time to be heard. I’ll happily shout that from the rooftops.

    Yes, yes, http://www.infantilescoliosis.org is the tiny, grass roots non-profit directly responsible for bringing Bex’s treatment to the U.S.- and I have to give credit to Shriner’s Hospitals for Children – both incredibly worthy causes and they both need donations to stay afloat.

    You can donate to ISOP at that web address by mail or online, there is a “Donate Now” button on the home page. And on your blog you can copy the ISOP logo by clicking on it with the right side of your mouse and clicking “save this image as” or “copy this image”…and put the web address with it. I’ll work on something more fancy, but that would be awesome, thank you!!!

    XOXO- H

  7. Connie Viana says:

    TEARS!!!
    This one hit me hard today…Getting ready for Halo Traction followed by fusion for my little. Your words rang to true, especially the brother part.
    Thanks for the cry.
    You are such a talented writer and an amazing mom. Cheers to you getting the word spread about ISOP and the world of lifesaving and surgery saving casting.
    Bex, LOVE the superman shirt. You are one QT Patootie!

    Connie XO

  8. sue says:

    Heidi, I can only just type through all my tears. You’ve said everything I feel and voiced all my fears that I try so very hard not to think about. I love my daughter so much and her IS terrifies me. You are really brave to write all about your feelings and increase awareness of this horrible condition. We too are off for a cast change in 2 weeks here in the UK, a whole continent away but with all the same fears, hope, dread….

    Bexon is a very lucky boy to have such a super mum.
    Sue and Abi (in Oxford, UK) xx

  9. Jamie Boros says:

    Wow Heidi. So many emotions. As with many others, I cried my way through. Our casting journey hasn’t begun yet, but the fear is there. In a sense it’s comforting to hear from someone else that it’s okay to be scared, it’s okay to be sad and it’s possible to find your own personal strength and ways to cope in spite of it all.

    “Put the oxygen mask on yourself first, right? It’s good advice in all areas of life. Hard to implement, sometimes.” This hit home with me. I think it’s a good reminder that we do have to make time for things for ourselves even in the midst of a trying battle.

    I will be thinking of Bex and your family as you approach your next cast appt and will be looking forward to a positive progress report!

  10. Heidi Ferrer says:

    Connie,

    You are an inspiration to me and to see your photos and video of your Antonio is to love him! I can still see his Happy Feet Video in my mind. Of course I was crying as I wrote this post- just a puddle of tears.

    I know how valuable halo traction can be and we would surely do it if we need to. Angels wear halos, that is for certain. We will be here for you and you WILL get through this, but I know it is so scary to face. Love to you and to your precious family. I’d love to put up a video of Antonio here one day if you’d like that. The Black Eyed Peas one is awesome, too : )

    XOXO- h

  11. Heidi Ferrer says:

    Sue,

    I feel the same way, we all have a connection that is hard to explain. And for most of us, getting our precious ones properly treated sooner would’ve made a world of difference. I’m not brave, maybe just a combination of mad and also deeply, deeply grateful that we found this casting through ISOP and Shriners. We so nearly missed the opportunity.

    Your sweet Abi is so lucky to have a wonderful mum like you! Please keep me posted on how your next casting goes. We are right there with you across the pond.

    Love, H

  12. Heidi Ferrer says:

    Jamie,

    I don’t want to scare you because most of the time cast life is just normal for us. We have to compartmentalize it and be happy anyway, and there is so much joy.

    Sometimes I get the lows, too, and I’ve also learned from Heather that you must take care of yourself. It’s not selfish, it’s actually giving to your family, because you can come back and be a better Mom when you have given back to your spirit and cellular energy.

    Like exercise, hot baths, or something fun that is not scoliosis related. No guilt allowed! It’s important to do because it allows you to pace yourself through this journey. That’s been my experience.

    It is very do- able! And for me, I’m learning that gratitude and love, when I focus on those two most important factors, pull me back up into the light.

    XOXO- Heidi

  13. It doesn’t fail Heidi, I always end up crying at least a few times a month reading something on your blog. I find myself telling everyone, I’m not expecting much in number change as long has it went down a bit. But It was a punch in the stomach when he only lost 8 degrees in first cast. And I was mad that I was hearing other kids losing 20 to 25 degrees in their first cast. I keep telling myself “every spine is different”. And chase still has a chance of avoiding rods. It is a roller coaster of emotions.

    http://mika-lynn.blogspot.com/

Leave a Reply

Your email address will not be published.

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>