This past month is usually really exciting... spring starts and everything is blooming - yes, even in the desert. AND every day that passes brings me closer to my birthday! This month, however, all I seem to think about is that my birthday will forever be over-shadowed by my BP anniversary. (April 1 & April 5) So, in short, this has been a hard month.
I have nothing new to report…but I do have a lot of fears. Obv. the BP side of my face will never look/be the same. Because it doesn't move, it already droops some… so what will this look like as I age? Will I ever be able to chew food on the right side of my mouth? Will I ever be able to whistle? Blow bubbles for my kids? Will I ever be able to rub my lips together to smear lipstick onto both lips? Will I ever be confident drinking out of any glass…and not worry that I will spill it on myself because my lip didn't work on that particular glass? I could go on and on… but perhaps the biggest fear… if I get pregnant… will this happen again?? ( because It is more likely). It brings me to tears just thinking about it…
Being that this is my last post (presuming this doesn't happen again) on this issue, I figured I should do my "final" recap. I'm definitely not "back to normal" or "healed" in entirety … in all honesty.. my face returned to 65% movement wise…but probably 90% looks wise (if I make no expressions). I have 4 major facial groups that do not work or move AT ALL… I can't move my forehead, my nose, my lip (top or bottom), or my chin…. so I guess the positive side is that I look decently normal for having so much still paralyzed! All neurologists told me most people last 4-6 WEEKS paralyzed… and I went 4 MONTHS fully paralyzed… so I guess it makes sense that I would have such long lasting BP effects. **Side note** For anyone who has ever struggled with long term BP… I have learned that the physical therapy stretches 3x a day that I have to do… are one of the main reasons my face looks somewhat normal. I've also been told that no matter if you've been fighting this for 30 years or 5 months… the exercises can still help you after all this time!
 |
| My poor face the day after the paralysis hit ( Imagine your face looking like this everyday for 4 months with no guarantee it would ever improve). I had no idea that the excruciating pain I felt all over that side of my face for a whole week, was my nerves dying & that it meant I would have long lasting effects of BP - And of course I couldn't take any medicine to alleviate the pain b/c I was pregnant. (This is also the reason my face is so swollen) |
Today/Residual Effects
 |
| Some face expressions I can't do.. on the left, I'm trying to puff my cheeks like a monkey… I can't do it on my BP side, and I can't even keep that eye open when I make this movement! The righthand picture, I'm trying to pucker/make a kissy face & I obv. can't do that either. This eye closure thing also happens when I chew/yawn/say any "m" words etc. So if you ever see my close both my eyes - this is why! I'm avoiding the awkward eye thing. |
 |
| The left picture I'm using the good side of my face to show how I can move my lower lip/chin… the righthand picture I'm trying to duplicate this on the BP side and can't move it at all/it closes my eye |
 |
| No forehead/eye brow movement |
Before BP, with BP, and After
 |
| I know I need to count my blessings for the healing I've had, but I do miss the face I knew for 30 years |
 |
| One of the only family pictures I took while 100% paralyzed… July 2013 |
 |
| And I finally took a new one… March 2014 |
To Maree & Ellie
It has been so hard trying to teach you girls to talk this past year… I still can't make my mouth work completely… Maree, between your ear issues and my mouth not working/having a lisp for 4 months, your speech has been really delayed - and I feel like I will probably forever carry guilt over this issue… your speech evaluation is April 9. Miss Ellie, I will never forget your first smile..and the smilies for the next two months… because sadly they were met with my awful paralyzed smile… but it didn't deter you from still smiling anyway. I am sad you girls will never know mommy's original smile, but I'm so happy to have a smile to give you none-the-less!
To Marc
You have been the most amazing and supportive husband -- I don't even have words to describe how grateful I am to you and how much your love for me always showed - no matter if I was paralyzed or not. My favorite Marc quote during BP - (Once recovery FINALLY started happening) Me: "Look at this picture of how terrible I looked when my face was fully paralyzed" Marc: "You never even looked like that - that must have just been a bad camera angle" (And clearly I did look "like that"… and I looked like that every single day for 4 months) - So thank you for always seeing me as you did when we got married… I love you.
I also am not sure I have worlds for you either - Now that I'm a mom myself.. I can't quite imagine the emotion you must have felt/feel since I'm your kid… I can't imagine feeling helpless for one of my girls.. and I'm sure you felt that way with me at times. One of the biggest things I can thank you for… is for ALWAYS, ALWAYS, ALWAYS letting me complain, cry, rejoice, etc. without any judgment. You never tried to tell me "oh, it will go away soon" or "oh, it will be fine"… probably because you've dealt with cancer… and no one knows any of those certainties… so false positivity statements like that only ended up discouraging/angering me because at that moment… nothing felt "fine"... What you did was SO much more beneficial… you listened and sympathized…you were my cheerleader. Having someone tell me that I was doing a good job (when I had a colicy newborn, a 19 month old terrorizer, and a completely paralyzed face) I felt like I was barely surviving.. but your "cheerleading" was immensely helpful. You were the only person I felt like I could really tell how hard this ordeal was on me… because everyone else gets tired of "woe is me"… but sometimes… you need to cry.. and you always were there for me. So thank you, I love you.
 |
| My whole family has been amazing- and group texting through this provided me with much needed laughter - so thanks to my siblings ( & Tara and Sara) for that too! |
To the blog followers: For those of you that have been following my blog this past year.. thank you for your support, prayers, and encouragement. PLEASE, never take for granted your smile… or the joy your smile can bring someone. And simple message of "I'm thinking of you" can make someone's an entire week.
To end on a positive note - I'm starting to finally allow my picture to be taken…. I have hardly been "in" any pictures for 1 year now because a "freeze frame" shot of my face looks worse than what I really look like… but cheers to a new year!
 |
| A new smile, a new year, a new perspective |
Ellen u have always been such a beautiful person inside and out. That post about your mom, well u sure got that trait of hers. You were always a great listener in high school and didn't pass judgement.
ReplyDeleteYou are a great person and reading your posts and seeing pictures of yours and your family's milestones is so beautiful, even with the hardships you've faced.
You have an amazing looking family and blessed you are. Happy birthday to a beautiful tough women & sweetie you don't look a day over 25 :)
Ellen, you're a rock star. Your blog this past year has been inspirational even during your toughest of times. As a mom now, I have a new found respect for everything you went through before you add on top BP. The good news is that even though your girls will not get too see your 100% smile, your "paralyzed" smile will mean the same thing to them when they see it: pure, unchanging, and unending love. And THAT'S what matters. You're a great momma and THANK GOD they have you! They're going to grow up to be awesome little ladies with their priorities in life straight because of what you teach them. Or just let them read your 2013 blog. That'll show them too. It's been a pleasure knowing you and reading your blog Ellen! (P.S. some shameless compliments: You look amazing. Every time I see pics you post I'm like: I love Ellen's hair, eyes, ripped arms etc. Gude picked a cutie for her BFF :-) Also, thanks for encouraging me to take some mommy time--- been doing cross fit! Will take a bit to lose the baby pouch but we're moving in the right direction. Thanks again for your encouragement!
ReplyDeleteI love reading your blog entries, you have given your readers raw emotion and your friends and family even more reasons to love and admire you! I appreciate the friendship we have developed and I look forward to our future friendship. Through it all I have always and overwhelmingly seen your beauty.
ReplyDeleteEllen,
ReplyDeleteYou have a beautiful spirit …… and, yes, I AM your biggest cheerleader!!! To persevere in trial takes a lot of courage each and every day. And you have done this. It also takes a lot of faith in our Holy God….who is ABLE!
Mom