Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly

Sign Posts on the Journey

on June 1, 2012

There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.- Albert Einstein


Every journey is marked with a few sign posts.






The hospital just called with a date for Joss’ surgery. Everything is a “Go”.

She will be admitted on July 2nd for a few days of intensive pre-op testing, then the surgery will take place on July 5th…

or possibly 6th.


Nick’s birthday.




Prior to Joscelyn’s HME diagnosis, we had made plans to go camping the first week of July.  I knew that it would be difficult getting through this next “first”: the first observance of Nick’s birthday since his passing. I reasoned that doing something to help take our minds off of everything would be really helpful.


So after I’d hung up the phone with the hospital representative this morning,  I prayed the following:


“God, I know I asked for some sort of distraction to help me handle this milestone this year… but this wasn’t exactly what I had in mind. Nick’s birthday?!! Really, God? What are you thinking?!”


So, it would appear that I’m faced with some decisions now.


I could choose to believe that God hates me and has a really perverse sense of humor. (It wouldn’t be the first time I’ve thought so, believe me!)


I could choose to believe that the date is just a coincidence and means nothing.




I could choose to believe that just as one of the greatest gifts of my life was birthed into this world on July 6th, 1997, another great gift: a new seizure-free, limitless life for my daughter, will be birthed into existence on July 6, 2012.


Nick won’t be standing here on this earth beside us on his birthday, won’t be blowing out any birthday candles, won’t be opening any presents-

but he WILL be with us!

Oh yes, Nick will be there with us in spirit on the 15th anniversary of his birth into this world;

loving his baby sister with that sweet heart of his and wishing all the best for her as she begins her life anew. Just as he did when he was alive.


Happy Birth-day.







18 responses to “Sign Posts on the Journey

  1. And Nick will be a lot less anxious than all of us will be, because he can see the big picture. All of us here in the Wayne house miss him so, so much, and we will continue to do so, more rather then less. But I try to hold on to the reassurance that the circle WILL be unbroken, by and by.

  2. giazzpet says:

    I am a really spiritual person and believe this is Nick’s way of trying to help his baby sister from above. G*d be with you on this journey of love and I send you lots of hugs and prayers from afar.

  3. Tiffany says:

    Wow. I like to believe that you will forever be able to celebrate Joscelyn’s re-birth day and that it will also lessen the sadness you feel. Also, didn’t know Nick and I shared a birthday! :0)

  4. Can’t believe how many years ago it was now that I met your sweet family and fell in love with 4 yr old Nick and all his brothers! Praying, praying. P.S Sorry I think I was so emotional I forgot to sign my last comment…this is Meredith (Kerger) Morgan

    • 5thmonkey says:

      Thank you, sweet Meredith! We love you and still think of you often! Thank you for your love and prayers!

  5. I believe Nick will be there guiding and loving you. Love that darling picture of you with your boy!

  6. Pam says:

    This is very profound. God is in control on this journey. He will be with you…and yes, Nick will be watching along with the angels in heaven. They will be cheering on the Dr. and sending warm comforting hugs your way…through the nurses and the people here who gather round you and your precious baby Joscelyn. You are not alone in this journey by any means. Be comforted.

  7. Cynthia Greenly says:

    Jen: I believe life comes full circle and this may be yours. I don’t even have words to say to you except to let you know I am here and I care. I left you a voice mail but realize how much you have going on right now. Just know I am willing to do whatever you need to help you through this difficult time. I am only a phone call away. I know Nick will be right there holding Joss’ hand and she will be fine. He loved his baby sister and is her guardian angel.

    Hang in there and just believe!


  8. Tara Morales says:

    My heart goes out to you and my prayers are with you all. I know God has his hand of protection, strength and comfort all over your beautiful little girl and your family. Love you

  9. Sue Moyer says:

    Wow, I don’t know what to say. As a mom of a Nick, the same age as your Nick, I am in tears. My thoughts and prayers are with you, your family and the medical staff as they take care of your beloved daughter. We had a sweet pup who had grand mal seizures in clusters for five months. It was heartbreaking. I can understand your feelings of helplessness. May you find comfort and peace every single day, one by one. I also have Ann Voscamps book. Bought it a year ago and haven’t cracked it open.

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