Forgetting and Remembering: The Dark Side

Let me just say upfront that in today’s post I will bare a bit of my soul that I have a hard time coming to grips with.  Part of me is terrified as I sit here with fingers anxiously tapping away at the computer keys; scared that you will judge me, afraid that I’ll expose a few of my weaknesses and you will think less of me, worried that admitting these feelings out loud will make them real and I’ll no longer be able to shove them aside like outtakes from an otherwise great movie.  However, they are undeniably part of me and part of my experience as the mother of a special needs child.  And maybe, just maybe, one of you needs to hear this.  So, I give you my darker side…

98% of the time I completely forget that there is anything different about Rachel.  She is just Rachel; silly, giggly, loving, funny, playful, sometimes ornery, willful, independent, compassionate.  There’s not a lot that sticks out about her when you see her playing with a group of children.  She is very “normal”.  We deal with typical parenting struggles like bedtimes, tantrums, time outs and learning to obey.  Most of the time, being a mom to Rachel is just like being a mom to any other child. Most of the time.

Rachel with her best buddies a few years ago

However, the 2% of the time when I remember that there are a few things different about Rachel is the time that tears my heart apart.  When I learned that my best friend’s little one who is 9 months younger than Rachel began walking about a month after Rachel figured out how to crawl, I cried for the better part of a dark and dreary night.  When toddlers at church were knocking Rachel over because they could all run and she could barely pull up to standing, I wanted to scream at them and run crying from the nursery with Rachel in my protective arms.  When my friends’ children all started potty training at 2 years and my efforts with Rachel only ended in both of us being overwhelmed with frustration, I was embarrassed and cried nearly every time a mom shared her joy over the accomplishment.  When I observed a group of children Rachel's age playing together at a play date and then noticed Rachel playing alone because she wasn’t quite cognitively or physically ready to engage in what they were doing, I had to excuse myself to the bathroom to sob silently while the other moms sipped their coffee on the couch.  Just the other day Kaia commented, “I can talk a lot.  But Rachel can’t talk very much because she’s Rachel.” This sent me into and immediate torrent of tears and I had to hold my tongue to not ruthlessly chastise my sweet little 2-year-old for being insensitive to her sister’s speech delays.

Eating a birthday cupcake at school last year

I hate that I have negative feelings about Rachel’s development.  I want to live in a bubble where I can reject reality and substitute my own perpetually happy version. My brain knows that Rachel is perfect and that she is developing in exactly the way that God so carefully and lovingly designed her to.  I know that all children are different, all children reach milestones at different times whether they have a disability or not.  I know that she is on the high functioning end of the Down Syndrome spectrum and I am so proud of her and her astounding accomplishments!  I have all the positive answers to every question about her development on the tip of my tongue at all times and love to gush about how well she is doing…but that doesn’t mean that I don’t have dark, weak, vulnerable tides.  Moments where I worry that the chasm between her and the “normal” kids is just going to continue to widen as she gets older…worry that once the other children actually begin to notice differences between them and her that she’ll only have “pity friends” who sacrifice time out of their day to play with the “special girl” because they’ve learned that it’s the right thing to do.  I worry that she won’t get asked to prom, that she’ll be lonely, that she’ll be excluded.  I worry that she’ll notice that she’s a little bit different and that it will make her sad.  I worry that one day she’ll just be another special needs adult that the public sees in a large group of “special” people at the mall food court on their field trip every Tuesday; that in the eyes of the world she’ll lose her identity as Rachel and just become “one of them”.

To deepen the pain of these awful thoughts, I place the burden on myself to make everything better.  I have had these thoughts on numerous occasions: “Terri, if you just work hard enough you can help Rachel to be just like her peers.  If you just spend time teaching her everything she needs to know in life, she will be able to go to college and blow everyone out of the water!  If you are just a good enough mom she will be….normal.”  Ohhhhh, and then the guilt takes over.  I berate myself, “Terri, what is WRONG with you?!? You LOVE Rachel, you know that she is beautiful, smart, friendly, happy.  She is perfect the way she is, how can you think these things?  What a terrible mother you are!”  The pit of despair deepens.

Rachel and a friend on Christmas Eve

This is ugly.  I know.  I wish with everything in me that this wasn’t part of my emotional journey, but it is.  Why am I baring my emotional nudity?  Because I know that I am not alone.  I know that I am not the only mother—father, grandparent, person—out there who deals with these same sorts of emotions and it is my hope that by sharing my entire journey, shadows and all, that perhaps someone will feel the warm embrace of similarity and find solace in knowing that they do not struggle alone.  C.S. Lewis says, “Friendship is born at that moment when one person says to another: ‘What! You too? I thought I was the only one.’” I have a dear friend who, to be honest, I’ve only actually met in person twice, but she and I share the blessing of having little girls around the same age with Down Syndrome.  Our friendship lives mostly on Facebook and we no longer even live in the same state, but the fact that we can drop into each others’ lives unannounced to cry together about vulnerabilities that we both understand so well is priceless.

Anyone who knows me will attest that it goes against my very being to say anything negative without bringing in a positive note—it’s absolutely my modus operandi. I really was going to try to leave this blog entry as is, fearing that if I wrapped it up with a nice pretty bow at the end the impact would be lost.  How modern and edgy that would be for me!  But, alas—that’s just not the way I roll.  J  So, I must take one last moment to share with you how God uses Rachel to reach out to me in these darkest of times.

I do my best to keep my blubbering and crying to myself when I go through periods of darkness, but sometimes I just can’t contain my emotion.  One evening a number of months ago I was really struggling with the reality that Rachel’s speech so clearly lags behind her peers, and I broke down sobbing on Rachel & Kaia’s bedroom floor.  The girls were playing quietly and mommy was curled up in the fetal position crying those breathless, ragged, sorrowful sobs that we save for solitude—I must have been quite a spectacle.  In the midst of my anguish I felt the gentle brush of Rachel’s hair on my arm and opened my eyes to see her beautiful, compassionate and concerned face leaning over me.  I will never in all my life forget the depth and wisdom that shone from her sparkling blue eyes as she studied her mother’s tear stained cheeks.  Cupping my face in her tiny, soft, little hands she pulled my face close to hers and said, “Mommy—it’s OK” and kissed me on the cheek.  In that moment I knew that God Himself was comforting me and kissing me on the cheek using the lips of my own personal little angel.

Yes, my journey does include darkness.  But God has provided me with a light and her name is Rachel.