Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly

The Lucky Fin

on June 20, 2012

Yesterday, the kids and I visited Animal Kingdom at Walt Disney World.

As a Florida native, I’m well aware that summer is one of the worst times to go to Disney. It’s hot, the parks are crowded and the lines are long, but I also know that Joscelyn is going to be getting the lion’s share of my attention over the next few months (no pun intended) as she recovers from her hemispherectomy surgery, so I wanted to fuss over the boys a little and give them some good summer memories while I had the chance.

Our morning started with me posting this pic of Joss on my Facebook page:

The caption read,

“Announcer: ‘Joscelyn, You’ve just discovered that you have to have half of your brain removed. What are you going to do?’

Joscelyn: ‘I’m goin’ to Disney World!'”

If we can’t laugh, we’ll just go crazy, right? 😉

Animal Kingdom turned out to be a great choice of parks! Joscelyn’s anti-seizure meds make her susceptible to heatstroke but we found lots of shady spots in which to rest and there were several shows in air-conditioned theaters for us to enjoy in between the rides. Even the crowds weren’t too bad!

We also learned one of the BEST Disney “insider” tips EVER!

The boys were really looking forward to riding Expedition Everest, a really popular roller coaster. In years past, if I was unable to ride on an attraction with the kids (which happened quite often since I was frequently expecting or subsequently caring for a young child too short to ride) I’d just wait in line with the other kids, duck out right before they got on the ride and wait for them where they exited. For whatever reason, this wasn’t an option at Expedition Everest and there was no way I was going to let my 9 and 10 year old stand in line for 50 minutes without me. The ride attendant suggested, “Why don’t you try the single rider line around the corner? The wait is shorter there.”

Shorter? Try non-existent! Instead of waiting 50 minutes, the boys walked right on! They couldn’t sit together but they were only a few seats apart. I met them at the exit and was immediately greeted with, “CAN WE GO ON AGAIN?” Which, of course, they did! 🙂

I’m not sure how many of the coasters offer this option but it’s definitely worth inquiring about!

Another great tip we received was to go on the Kilimanjaro Safari first. The animals are more active in the (relative) cool of the morning and we were able to see hippos, giraffes, gazelles, lionesses, rhinos, elephants, and a host of other animals on the ride. Animal Kingdom is full of educational opportunities, including some special “Kids’ Discovery Club” areas where kids can pet, handle and discover more about wildlife.

Joscelyn was fascinated by everything and kept craning her neck so she could look at all of the sights, sounds and activity.

She especially loved “Finding Nemo: The Musical”. Aside from the great music and fabulous special effects, the performers carried HUGE puppets on large poles and danced among the audience members. Joss spent most of the performance with her left arm outstretched in the direction of the stage and her hand opening and closing as if to say, “GIMME!” 🙂

I always liked the movie “Finding Nemo” but I find that I relate to the characters in some very special ways now.

For those of you who haven’t yet seen the film (which I highly recommend doing even if you have to borrow some one else’s small child to feel good about doing so), it begins with a happy pair of expectant clownfish parents surveying their new home in the ocean. They cuddle sweetly, speak of exciting future plans and pick out names for their babies. Sadly, tragedy strikes in the form of a barracuda and all of their children are struck down with the exception of one. Nemo survives but he is born with a badly damaged fin which he and his father Marlin refer to as his “lucky fin”. Marlin coddles and babies Nemo as he grows, always fearful that something terrible will happen to him as it did his other children. Eventually, father and son are driven apart by Marlin’s lack of confidence in Nemo’s abilities and by his own reluctance to let go.

I fear that Marlin and I have a lot in common.

Nick’s death last fall was completely unexpected and traumatic. I had no idea when I hugged and kissed my sweet child goodbye on the evening of November 26, 2011 that I would never see him again. Later, in counseling, one of the main topics of conversation would be my anxiety that something would happen to one of my other children. Meanwhile (unbeknownst to me at the time) my children were drawing pictures in their counseling sessions of their deepest fear: that something would happen to me.

The malformation in the left hemisphere of Joscelyn’s brain is already affecting her mobility. She never uses her right hand for anything. It’s like it doesn’t exist to her. At 12 months of age, she isn’t crawling, isn’t pulling herself up to stand and isn’t walking. The crookedness of her smile is even becoming more pronounced as the months progress, something we’re beginning to attribute to weakness in the muscles of the right side of her face.

After surgery, she will be effectively paralyzed on the entire right side of her body. The many therapies she will be receiving post-surgery are designed to awaken her senses to the knowledge that she has a right arm, right leg and right hand. Once she becomes aware of them, she will spend the rest of her life building and strengthening her controlled use of them.

She’s going to have some “lucky fins”.

And I’m going to have to overcome some deeply seated phobias.

I won’t spoil the end of “Finding Nemo” for you and tell you what happens to Marlin and Nemo but I will tell you that it’s going to be a movie we plan to play over and over again for our little girl.

I want to be Joss’ biggest cheerleader. I want her to look into my eyes and see reflected there, the image of a strong, capable young woman ready to take on the world. I don’t want her to misunderstand my fear or mistake my reluctance to let her go as a lack of faith in her ability. It’s just fear. Unreasonable…and yet in light of what has happened, perfectly understandable fear.

Lord, let me be strong for my daughter’s sake! Help me to quiet the tormenting thoughts that would cause me to hold her back from achieving her full potential! Give me the strength to bravely paste an encouraging smile on my face when she wants to move beyond her comfort zone (and mine) into the deep of life, when every fiber of my being wants desperately to keep her in the shallow end where I know she’ll be safe. Never allow my enormous love for her and desire to protect her become a wedge that drives us apart.

I Googled “lucky fin” earlier in hopes of finding a YouTube clip from the movie to share with you. I couldn’t find the scene but in true “It’s a Small World After All” fashion, I did find another mother who has also embraced the concept of the “lucky fin” for her daughter.

The Lucky Fin Project is a nonprofit organization that exists to raise awareness and celebrate children and individuals born with symbrachydactyly or other limb differences. I’ll be ordering Joscelyn one of the small bracelets they sell to wear when she’s a bit older. Lucky Fin Project founder Molly Stapelman says, “I believe everybody is different. Some people’s differences are on the outside and easier to see than the differences others have on the inside.”

This is a valuable lesson I hope to teach Joscelyn. None of us are perfect. We’re all wounded. Those who would mock her for her differences are maybe the most wounded of all.

Our daughter is going to grow up with huge amounts of  love, acceptance and encouragement. And that’s lucky, indeed.

As a reminder, Today is Day 2 of Joscelyn’s Blood Drive. You can read more about how to donate here: Blood Drive Info

We’re also excitedly anticipating the Hat Party that our loving friends in the community are hosting! Please join us if you can! Hat Party Info

In the meantime, we’re going to follow the wise words of my favorite character in Finding Nemo, a little blue tang fish with short-term memory loss named Dory:

“Just keep swimming.”


10 responses to “The Lucky Fin

  1. simplytrece says:

    There is an awful lot of wisdom in Finding Nemo. It comforts me a lot.

  2. debbie says:

    Every time I think I have reached the depth of my admiration for you….I hit even deeper waters!!! I love you my friend!!

  3. Steph says:

    Love this. I cannot help but always keep thinking about what plan must be in store for you…how it still looks so BIG and so SCARY and so TRAGIC, yet, we as Christians know that always, even in the midst of the big and scary, there is always this KNOWING that there is an important reason, that He is sovereign, that there is good that is coming from it…and I think, “Jen is the right person for that job, Lord! She’s the one. You picked well- to use her so mightily in your plan that right now we cannot see but somehow, someday, we will see. Because only BIG things come out of BIG sufferings. Your thoughts as you travel this road are telling the story of a stellar processing…an amazing one, the likes of which I have not seen. Your pain processed into reasoning it out and your reasoning it out processed into strength and your strength processed into wisdom that every person should hear. We are rooting you on! We are rooting Jos on! We are yet thinking of NIck..We will push through the waters with you and support each Lucky Fin of Jos’…and your own lucky fins of your heart- when they are too weak to hold you upright. You are causing a great life change in many through your endurance of what no mom should endure. I admire you so! You are a life giver.

  4. Everytime I read one of your posts I can’t help but laugh and cry at the same time. You have been given an amazing grace in all of the things that are happening in your life…only a loving heavenly Father could have accomplished that in you already. Thank you for opening your heart to us with all of your fears (understandable), concerns, insights and tears…and all sprinkled with laughter and love. God is truly working through you and in you…and we are fortunate to witness this transformation. Your little girl has a wonderful life ahead of her…you won’t allow it to be anything BUT wonderful…and that’s a God thing undoubtedly. All I can say is, Thank you, Jesus!

  5. scrappygrams says:

    I have never seen Finding Nemo; now I must rent it. Maybe my 20 month old great-granddaughter would now enjoy it. When I read your posts, I can’t help picture my dumpling going through Joscelyn’s journey. II pray that God continues to strengthen you for the difficult times ahead. I’m praying for Joss daily and for her surgeons’ hands to be guided by the Spirit. (I presume more than one will be involved since it’s such a lengthy procedure.)
    What fun for the boys! God bless you and yours! May you have a restful weekend. ~hugs~

    • Thank you so much for your prayers! I’m sure that your great granddaughter will enjoy the movie very much. Please post again after you’ve seen it and let me know what you thought of it! Blessings!

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