Sunday, December 27, 2009

The In-Group

When my son was first diagnosed with an Autism Spectrum Disorder (later Asperger's) in 2000, I was devastated.  I remember being in the shower the next day and falling to my knees, sobbing, thinking that this beautiful, smart 3-year-old was never going to love, get married, have a family...  What was there for him?  A world of never understanding others, of aloneness.  I think I might have even journaled reams for several days.  Not too long after that, I came to a realization:  He was the same kid on September 14th, 2000, as he was on September 13th, 2000.  But now we were armed with the name of the road we had to walk.  And so began the journey...

The above isn't the point today.  Today the point is what developed in one area of my life:  friendships.  I don't really make friends easily or quickly -- I'm much more of a tortoise -- and my list of friends has always been small.  Having moved to a place near none of my friends, having no job anymore, and having no such thing as Facebook, I lost contact with most of my friends.  Taking care of a child with an ASD is very time consuming and stress inducing even without caring for his toddler sister.  Autism is so very different from most other disabilities.  Parenting is so very different.  Sleeping is so very different.  Meal planning is so very different.  Schooling is so very different.  Therapies are so very different.  It isn't called a pervasive developmental disorder for nothing:  There is no part of his life, or ours, left unaffected by his autism.

About a year into the diagnosis, a local parent of another child with an ASD put out an ad to start a support group.  This was a pool of people, all mothers, who understood what it meant to be the mother of a child with Autism, the stress, the interrupted sleep, the battles with school, the battles with insurance.  Looking at other children the same age and grieving that he'll never be like that.  We didn't need to explain why we had to hang up the phone; it was enough to say, "Gotta go -- Bye!"  We never said to each other, "Let me have him for two weeks.  I'll make him straighten up and fly right."  And no one would think to say, "He'll eat it if he's hungry enough."

Behold my new friends!  How could anyone else understand what I was going through?  What it was like to have a child with Autism.  The broken dreams.  The grim future.  The heartbreak.  The fights with school.  These people never said to me, "God gives special children to special people."  Or, "Was it something you did when you were pregnant?"  Or, "I don't know how you do it.  I couldn't do it."  (FYI:  You do it because you have no choice.  You can't cure them, and you can't give them back.)  When the elementary school principal called me to tell me that my son was running around her office and spitting on her, these people applauded the accomplishment of his spitting right along with me -- if he could now spit -- a heretofore unmastered skill --  he could have toothpaste on his toothbrush!  Oh, happy day!

My son is 12 now.  He's doing reasonably well.  (There's a lot to be said for better living through chemistry.)  He's in a program that, though not fully appropriate for him, is the least inappropriate that the school system has available.  We still have battles with school and insurance.  We still have battles with my son.  And I would never wish puberty on anyone.  But all in all, today, he's doing reasonably well.

He's doing so well that last year I took on my daughter's Girl Scout troop.  I love Girl Scouts.  I was never one as a child, but I think it's a phenomenal organization.  I also volunteer with AWANA.  And you know what?  I found that I could find friends among mothers of neurotypical children, too.  My world doesn't have to consist of the world of Special Education.  While I'll probably always be involved in the ASD Support Group of SoMD, I just don't feel like being an officer of the Citizens' Advisory Committee for Special Education and sitting on the board of the local Learning Disabilities Association and, and, and...  I'd like to get on with life.

So why am I talking about this now?  Well, it's because of my dear friend who is now a member of the baby-loss group.   I look back to that paragraph above, How could anyone else know what I was going through?  I know that parents in the baby-loss group will be my friend's new set of friends.  Everything that happens will be measured against the life of her son, the life not lived, and that group of people will understand every emotion that grips her, every tear that she sheds, every milestone not met, the heartbreak of every holiday and birthday with an empty place at the table.

I'm not a member of that group, and I can't compare my situation to hers, but I can understand surrounding yourself with the In-Group.  I so want to comfort my friend.  Will she let me?  I'll just make sure that I stick around just in case...

Friday, December 25, 2009

A Letter to My Dear Friend

My heart is so full for my friend whose beautiful, much-anticipated, much-loved son is now an angel in heaven. I have so many things to say to her that I'm full to bursting, but they're about me, not her, and now is just not the time... So here's a "letter" to my dear friend...

Dear L--,

I knew from the first time I saw your million-watt smile at my Natalie's Open House that you were going to make her year. It's so nice to be right. You took care of her, saw to her considerable needs, and along the way, you became my friend. I think you've never met a stranger, but to me, this is no trivial matter.

Becoming a mother has been so important to you. I remember walking past your door one day to find you beaming through tears at the "feeling" you had that your daughter was that day now in the world and would soon be with you and J. I felt your frustration and saw your heartbreak as the international adoption situation caused you to close that door.

I witnessed your walking a new path to your family. You chronicled the IVF procedure along with your hopes and shared with us the miracle of M's conception and growth from your "little jelly bean" to the fully developed, yawning, breathing, kicking, squirming, "stubborn monkey" inside you.

When you went into the hospital, the good wishes poured in. J. kept us all updated on your status. We all waited to hear, "He's here!!" I never once anticipated that the words would be, "[L] needs your prayers....emergency c-section and M[--] flown to GW NICU...he is fighting for his life. Here's where I pray stubborn will make a life's difference." Natalie and I prayed. I prayed again and again. In the morning, I expected to read that he had passed the crisis, whatever it was -- I thought it must be his kidney issue. Instead, I read, "[L]'s little boy passed away early this morning." My devastation, though nothing to yours, brought me sobbing to my knees.

I knew that you needed to be alone for awhile, and I felt helpless to do anything for you. So I checked in on FB, and I watched your blog. I felt sure that you, a public journaler, would need to write it out. Sure enough, your "Goodbye my angel" letter to M. appeared, and you touched us all with your love and your sorrow. You then gave us something tangible to do with your "Thank you friends" post: We were able to donate to help the children in Kyrgyzstan with an EKG machine and to fund the Now I Lay Me Down to Sleep foundation's mission. And you gave us M's pictures -- all the beautiful photos of him outside the womb, fighting for his life or resting in his father's arms. I look at them often; I find myself stroking the screen. They will be cherished.

The funeral service was a beautiful tribute to a beautiful soul, a soul created by two loving hearts and God's miracle. So many people were there to support you and J. and your family. That your aunt read your Goodbye letter was a fitting tribute to the power of your words and to your ability to love and to share yourself.

You loved M. fiercely. You allowed us to love him, too.

Now I think about you almost constantly; I grieve for your son, but more, I grieve for your grieving. I read your blog and cry and pray. I have "conversations" with you all the time, trying to help, trying to hold you up to the Lord. I want to be able to offer you comfort, but there is no comfort that I can give for this pain, these expectations not met.

Natalie and I bought M. a Christmas ornament on the day you went into the hospital for the induction. We searched through the Christmas store in the mall and found the perfect one -- a little blue "sock monkey" wearing a Santa hat. A monkey for L's monkey, I thought. I have it on the tree now, and I smile and I feel sad every time I walk by it. And I think, "How much more does L. feel, she who had all his Christmas shopping done weeks before he was born, she who had such plans, hopes and dreams for him." And I grieve for your grieving.

Your "New Normal" is a horrific thing, but I can't rant and rave and shake my fist at the fates. It only makes me more upset, and it does no good. So I pray and I search for comfort, for you and for me. While I don't understand God's plan and don't pretend to, I have found solace in this: "For the Lord does not abandon anyone forever. Though he brings grief, he also shows compassion according to the greatness of his unfailing love." (Lamentations 3:31-32) Brave words for someone who hasn't lost a child, aren't they? But they aren't my words, they're God's.

Oh, L., I believe in my heart of hearts that you will hold M. in your arms again in Heaven. It saddens me that it won't be before then, but I believe it will happen. I believe in my heart of hearts that you will have more children in your family to join the cherished memory of your first-born son. And I believe in my heart of hearts that God is a loving God even when I don't understand.

With love and prayers ongoing,
Terri