Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly

The Story of Joscelyn

on June 22, 2012

My husband Michael is a geek.

 I’m not being mean when I say that. He’s actually a self-proclaimed geek and rather proud of the fact. Actually, he claims that I’m a geek too, just because my degree is in Internet Marketing and I know a few odd Star Wars trivia facts; and because I caught the reference to Captain Jonathan Archer‘s dog in the newest Star Trek film, and because we met at a Renaissance Faire…Ok, so maybe he has a point 🙂 but I still say he’s a MUCH bigger geek than I am!  He’s a computer programmer AND plays online games AND reads books about String Theory… just for fun!

Anyway, when we found out that I was expecting with Joscelyn, we did what most parents do and we bought a baby book in which to record memories and milestones. I guess maybe it was just a little different than the traditional baby book, since it was written by (and for) geeks. It’s called “The Story of You as Told by Nerds” by Tiffany Ard.

(Let me stop for a moment here because I’ve just introduced the term “nerd” whereas before I was speaking of “geeks” and some of you might be thinking, “What’s the difference?” or even, “Is there a difference?” or possibly, “Wow, How much crazier can this woman get?”, all of which are completely legitimate questions. This infographic helps to shed a bit of light on some of the subtle variances, as does this Venn Diagram, but for simplicity’s sake, I’m just going to use the terms “geek” and “nerd” interchangeably here.)

“The Story of You as Told by Nerds” is just like your average baby book in that there’s space to record all the typical baby milestones: first smile, first food, first tooth but it’s also filled with adorable scientific drawings and quotes and includes space to record baby’s “first experiment with gravity” (aka walking), first programming language, etc.

One page, entitled “Methodology” prompts parents to explain how their child came to be. “Families can be formed in many different ways”, it says. “You joined our family thanks to:

A) The Old-Timey Way

B) The Miracle of Modern Medicine

C) Adoption

D) We Constructed You Using Items From Around the Lab

E) It’s Complicated

F) We Found You in a Surplus Catalog”

In retrospect, options B, D and E seemed absolutely hilarious at the time but are now rather eerily accurate!

We bought several other geeky baby items in anticipation of Joss’ birth. A maternity shirt, a set of blocks, an ABC book and this onesie:

 all because we believed that our perfect baby daughter was destined to be a brainiac just like her daddy.

Joscelyn was born in May of 2011. I faithfully recorded the details of her baby shower in her baby book along with a few other facts but then the unimaginable happened and we lost Nick when she was only 6 months old. Her baby book sat gathering dust for months. I wasn’t really paying attention to when she got her first tooth or when she took her first bite of solid food. Much of that period is shrouded in a fog of intense grief and my memories of those important “firsts” are lost forever in the thick of it. 

I realized this morning that I didn’t even know where her baby book was anymore.

I don’t know what prompted me to go in search of it today. Maybe I wanted to reclaim, if only for a moment, the excitement and joy that I felt when we first purchased it and had so many hopes for our little girl. We still have hopes for her of course, but they’re less audacious now, less grandiose. I believe in miracles and I know that our little girl might still grow to be the next Marie Curie and develop a cure for cancer- but really, my greatest hope now is that one day I’ll be able to hear her say, “I love you, Mommy!”

All of the standard milestones that most parents take for granted and dutifully jot into baby books will be minor miracles for us. First steps? Amazing! First words? SO precious! We will hold our breath awaiting those moments and when they come (Dear Lord, let them come!) we will rejoice with each and every one of you who are walking with us on this journey.

As I was flipping through Joss’ baby book today, I came across this quote from Robert L. Park:

“The greatest discoveries of science have always been those that forced us to rethink our beliefs about the universe and our place in it.” We are doing some heavy-duty rethinking of our beliefs these days, quite a bit of which revolves around Joscelyn’s place in the universe. Every parent has hopes and dreams for their children. We naturally want them to love the things that we loved as a child. We want to shape them and mold them into mini-versions of ourselves or maybe mini-versions of who we always wanted to be.

But what if God has a different plan for them? A different place in the universe than the one that we imagined? As Jon Gordon says, “I don’t want my children to be what I want them to be. I want them to become everything God created them to be.”

If you look up the word “geek” on Wikipedia (which is, in itself, a pretty geeky thing to do) you’ll find that the word the word geek is a slang term for odd or non-mainstream people, with different connotations ranging from “a computer expert or enthusiast” to “a person heavily interested in a hobby”. It can be used in a pejorative sense but many consider it a compliment.

“Odd or non-mainstream”? That’s going to be our daughter in a nutshell! The thing is, with us as parents, Joscelyn never stood a chance of being “normal”. The fact that she will have half of her brain missing will likely be the least odd thing about her 😉

We wanted her to be a “geek”, not in the “brilliant but socially awkward” sense but to love to read, to investigate and to be curious about the world around her. (If she had to model herself after a Disney princess, we were rooting for Belle from Beauty and the Beast.) We wanted her to thirst for knowledge, to value the wisdom of those who had gone before her but to also boldly imagine new possibilities. We wanted her to feel comfortable embracing the math and science careers that are typically shunned by girls because our society discourages them from pursuing them. Maybe she would take to those subjects and maybe she wouldn’t, but if she didn’t, it wouldn’t be because they were “too hard” for her.

We didn’t want her to feel like anything was too hard for her.

Now, it seems that even the simplest of things will be incredibly difficult for her.

I believe that God has a plan for our little girl. For sure, she is going to inspire a lot of people! And once you’ve spent your entire childhood having to work so hard for every little thing that comes so easily to others, you probably don’t know how to approach life with anything less than your all. Maybe hard work and creative problem-solving will just be so second nature to her that it’ll never occur to her that she “can’t” do something.

Maybe this condition is the key to her becoming everything that God created her to be.

“We must be willing to let go of the life we have planned, so as to accept the life that is waiting for us.” said Joseph Campbell. And as parents, we must be willing to let go of the life we have planned for our children so as to help them accept the life that God has waiting for them.

I plan on bringing her baby book with me to the hospital. During the 8-14 hours she’s in surgery, I plan to paste photos and answer questions like, “What was the Feature Story in Scientific American on the Day of Your Birth?”. I’ll try to catch up on filling in as many details as I can remember.

And I’ll look at those blank spaces where I would have normally logged her first time crawling and first steps and instead of feeling sad at what I think we have lost, I’ll try to remember that the book in my hands only chronicles her story “as written by nerds”.

What matters most is the beautiful story being written by God.

And I can’t wait to read the next chapter. 


20 responses to “The Story of Joscelyn

  1. Tina Miller says:

    Beautiful Jen. I am sure you will have plenty of “firsts” to record in Joss’s baby book. Cherish each one.

    It reminds me of a post my cousin Twila posted awhile back on facebook. It simply states it all. I hope this is not too long but I felt the need to share this touching post. Henri is 13 years old and has Angelman’s Syndrome. He is a true miracle and amazing 🙂

    BY: Twila Cheatham MacLarion
    Ok my boy never ceases to amaze me, tonight after dinner he had finished his
    usual fruit snacks and I was taking him back into the living room.He headed to the snack cabinet his dad had opened and reached and reached until he touched and grabbed another bag of fruit snacks letting me know for the 1st time in his life that he was not done eating. He brought tears to my eyes. To some mom’s that is just everyday activity but to me a miracle, a long time coming, a dream come true. You really just don’t know how it made me feel. I love him more than words can say!!!!!
    YEAH Henri, I will never stop believeing in you, you can do anything you put your mind to. I LOVE YOU, mom!!!!!

    • Thank you so much for sharing Twila’s beautiful post with me, Tina! I think that we are lucky in some ways, to never take even the smallest things for granted. Every step forward is such an amazing gift! Hugs to you, Twila and sweet Henri!

  2. giazzpet says:

    Shoot, Charlie is now 8, I barely have time to look at his baby book, but I look at him now and wonder how he got so big and funny. We’re nerds/geeks too, but he’s his own person for sure! I know you are having a tough time, but hopefully soon things will turn out better. I send you prayers and healing thoughts from afar. Maybe after the surgery, and we can plan it, we can maybe do a vacation in FL (Disney?) and meet up…HUGS.

  3. Steph says:

    Beautiful! Amazing that I come to your blog and find healing here. That is SO amazing!!!! Your words Jen, are like therapy somehow…there is something “right” for lack of a better word, about your process. Is it selfish to say it is helping ME? Love you!

    • Thank YOU, Steph! I consider ANY good that comes from the trials of the last few months a blessing! It helps me to know that telling our story can help others in even a small way. LOVE you!!

  4. mommasylvia says:

    My prayers go out for a safe surgery and positive results. I am sure that God has a beautiful and special plan for Joscelyn and a wonderful life! It may not be the plan you originally had in mind and it may not always be easy but it will be wonderful because God loves her and so does her sweet mother who will see to it that she has a wonderful life.

  5. Norma Ruttan says:

    God bless you and your family.

  6. Jennifer, know that Gary and I will NEVER take anything for granted again : Each other, Ryder; our very lives. This post was so beautifully written. I smiled knowing that you will have a project at the hospital to help you and Michael through the hours…

  7. Jennifer, I am so touched by your story and am following the surgery details for your little girl. I have memories of my infant son, born 10 weeks early, being in the NICU with all the monitors and tubes. I am so glad to know you are working on your baby book project while your little one is in surgery. I hold you all in my heart as you navigate this incredible time. Thank you for sharing so openly and letting the love pour in for your family.

    • Thank you for sharing your story and words of encouragement with me, Meredith! I hope that your son is doing well now and that those scary and stressful days in the hospital are far behind you! Hugs!

  8. Jennifer, this is Sr. K from Carla’s facebook page. It may just be that Joscelyn will be a conduit of communication for her brother, who still has so much to tell you about life on the other side. Know that thousands of people are connected to you because of her. We send you courage and love!

  9. Jean Bonner says:

    Jennifer, this piece of writing has moved me to tears. My daughter is just a few months older and has the same condition and surgery as Jocelyn. You have expressed everything I feel about the journey that we have also been on. Our hopes and expectations as parents, how they have changed and how this experience has made us better people. Also how my daughter has generated so much positivity and prayer in the world and how she is a continual inspiration to us. Our daughters are beautiful children and will make their mark on this world, that is for sure. I would be very confident your daugter will have that thirst for knowledge, love reading and lots more besides! Jean Bonner

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