Wednesday, January 9, 2013

Children Like Your Own

Lydia is two months old today.  She seems to do everything that she should be doing, and she certainly does things that Naomi did not do.  She smiles back at me if I smile at her, she engages in reciprocal cooing, she rolls over from her belly to her back, she holds her head steady, she can stand if I hold on to only her hands, she makes sustained eye contact we me, she stares at my face.  These are all things Naomi did not do. Some of these things Naomi still does not do.  Some of these are things she never will.  All of these are things  that Naomi will someday not be able to do again.  I have longed desperately for so long to have a baby who develops as she should.  I have craved it.  I have coveted it.  Lydia is a wish granted, a dream come to life.  And I am reveling in her.  But I am also grieving anew.  When Lydia and I lock eyes and chat there is a very vocal part of my heart wishing it were Naomi, or rather, that it had been Naomi.  I don't know if I can ever find the words to describe or explain how deeply I wish, wish, wish that Naomi did not have Batten's disease. I think sometimes that I will go mad with longing for her health and well being.  It is a wound that just does not, will not, heal.  And I know about wishing.  As my grandmother was fond of saying, wish in one hand, shit in the other.  As quickly as I wish it, I strike the thought from my mind and force myself to think more practically.  That I love the Naomi that I have; I love every bit and piece of her.  I love her and who and what she is.  I love each and every one of her ways.  I am proud of her.  And I am cognizant of the fact that Batten's diesase makes her, well, her.  But that doesn't stop my heart from feeling differently.  It doesn't stop my heart from wishing that it didn't have to be so.  I have often said, I don't want to change the past, I just want to change the future, that I want tomorrow to be the first day of her getting better.  Of her being cured.   I say that, and I feel that, because I don't want to lose the child that I have had in order to gain the one that I wish I had had.  And I understand that those feelings mean that when her life ends I will not want to change one single day.  But my heart wishes otherwise.  My heart is wise enough to know that if she'd never had batten's disease in the first place, if Rob hadn't given her a sporadic fatal mutation on the same gene where I carry a fatal mutation, that I wouldn't be in this position of both wanting the child that I have and  wanting the child that she would have been had this ugly disease not gotten in the way.  Here's the thing about batten's disease.  It's a serial killer.  It's a murderer. It's a drunk driver.  It's a pointless war.  And it has taken from Naomi and each and every one of its victims their potential and their futures.  Go to and look at face after precious face of batten's victims and think, know, really try to understand, that all were children like your own, much loved, much wanted.  It makes me sad that Lydia now too, like Naomi, causes both joy and sorrow.  

Naomi turned two months old three days before Christmas.  Her early infancy was much like an Edgar Allen Poe story, a blissfully happy time with an a weak undercurrent of disaster growing ever stronger and stronger until it washed the foundation of our lives right out from under us, a soft tapping on my consciousness gradually turning  into a jackhammer of fear and doubt.  At two months old, Naomi was still young enough, and had been born early enough, that we could ignore the sounds of moving water and boring doubt. But the awareness was there and growing.  In my moments of weakness, I wish for a lot of things.  One of the things that I wish for is that I could go back and relive her early years again, that I had then the sang froid I have now, that I didn't have to go through the grieving process during those same, precious, early months.  I just don't think there is any way around that, that when your child is diagnosed with a horrible illness you have to both grieve her life and enjoy her life at the same time.  It's very hard. 

Naomi at two months old.

Naomi at 4 years, two and a half months old.


  1. This all rings so true.
    Your writing has been so powerful and so poignant lately.

  2. I say that, and I feel that, because I don't want to lose the child that I have had in order to gain the one that I wish I had had.


    Really true - yes, I agree with Jenni. Your writing marks my soul.

    Thank you,

    Cathy in Missouri

  3. Hi there.
    Jenni directed me this way and I'm so thankful. Our daughter, Mabel (2 1/2), has an unspecified type of NCL although her symptoms started right away so they assume she has an infantile or unknown type. Anyway, I am so glad to meet you and hopefully connect more with you. Feel free to email me and visit our blog at Hope to hear from you!