Wednesday, March 14, 2012

Dead Babies

That's right.  I said it.  DEAD BABIES.  Because if you are going to understand every aspect of our new life, this reality is a huge part of it.

As I conducted my last Facebook spot check of the night before turning in last night, I noticed several friends posting updates asking for prayers for one of Anabelle's friends who is not doing so well.  This is at least a weekly occurrence in our new world.  Before having Anabelle, I knew ONE family growing up who had lost a child to cancer.  And it was always said behind your hand, "Their little girl died from *whisper* cancer."  I now know dozens of people who have lost their children.  And I know hundreds of children who are almost guaranteed to die before reaching adulthood.  My own daughter is one of them.

And I am not typing this through tears, and at this point, there is only a little anger (which flairs up, of course, any time one of the babies actually DOES die), but I want you all to get it.  Because unless you are the parents of one of Anabelle's friends, you may just not have any reference TO get it.  I know I didn't.  Sure, I was aware that kids died of diseases.  I was aware that children in Third World countries were dying of starvation.  I know about accidents and murder and suicide.  But it lived in my periphery.  Now, it is everywhere.  And not just among the special needs families that I know.  I have become acutely, painfully aware of ALL dead babies.  I feel like Cole Sear: "I see dead people...walking around like regular people...all the time.  Everywhere."  And with apologies to M. Night, my dead people really AREN'T dead yet.  I am just disgustingly aware of their imminent demise.

Even from the beginning, I was able to see that there were situations that were far worse to endure than ours with Anabelle.  Losing a healthy child through disease or accident seems impossible.  Watching your child starve to death with no ability to help them is torture I cannot imagine.  And since I'm pretty sure that 99% of you reading this are adults (and that the other 1% is comprised of my teenage cousins), I want you to participate in a little exercise with me: Close your eyes and replay your life in your mind, from your earliest memory to this very moment.  Now do it again, but stop at age 10.  Now imagine that was it.  10 years.  That's all you got.  No high school, no college, no career, no marriage, no first house, no babies.  No 21st birthday, no ruby wedding anniversary, no father of the bride.  10 years is a long shot for some of Anabelle's friends.

My intention is not to disgust you, upset you or guilt you.  I decided when I started this blog that I was going to be as open and honest as I possibly could be, so that Anabelle's journey brought as many of her loved ones along with her.  I assume that if you are reading this, that is what you are here for.  And while I marvel every day at the amazing blessings Anabelle has brought into our lives, and the lives of so many around us, I am also constantly aware of where this journey ends.  Of course, it ends where everyone's journey ends, the road is just a little shorter.  Watching babies suffer and die is a regular part of our new life.  It is what comes with the amazing support and camaraderie of knowing so many special needs families.  If you want to take this journey with us, you need to know that the scenery is always breathtaking...but not always in a good way...


  1. You just made my day! Thnak you for opening up eyes of others! It is hard for a parent to know how you or I feel with a child who is likely no goign to see their 10th birthday or ear a wedding gown. Ruthi is our biggest blessing and without her I would of never had as much compasion about the things I do without her. I look up to you and Annabelle for adive and imformation about this journey that has been chosen for us. Thank yoy!

  2. This blog entry is so visceral. It speaks to a sadness that is almost beyond description. It also serves as a reminder that although we feel we know and certainly fear what the future holds, it is important that we live in each moment. In those moments and days when the children are well, we can be at peace. When Anabelle smiles or shares a song with us we know that she is HERE NOW and our hearts are full.

  3. I am fotunate to have been brought up in a family of a special needs person. And yes I say fortunate because it taught me at a young age to appreciate the life that God gives us all. My uncle was not supposed to live to see adulthood, but not only did he live, he lived a very fulfilling life and meaningful life. He died 8 years ago close to 70 yrs old. he was instrumental in getting Pennhurst State hospital closed. In visiting the Pennhurst as a child we saw every kind of handicap possible. And again I count my self fortunate not because I was so called "normal" but it gave me an appreciation and respect for all life.

    When I look at Anabelle, I don't see her handicap, I see her beautiful smile and I see a pure spirit and most of all I see LOVE. She is loved and she loves too. So I understand, although I don't have your understanding as her mother. I have been praying for you and your family and though I don't know you personally, I know Mrs. Harper. Life tells us that we all have an appointment with death and to think diffently is folly. But I get what you are saying and I am praying for all the "dead Babies" too. Jacquie Wilson

  4. One of my best friends has had cancer for several years now and has said to me, "It seems strange now to be with normal people who aren't actively dying." Strange enough for young(ish) moms to be the ones dealing with truncated life expectancy. Kids are a whole different ball game. Thanks for sharing your stories with the rest of us.