Thirteen Going on Six

I never got to experience the trepidation and excitement of waiting for lines to show up on a urine stick with her. I didn't go through all those months of carefully watching everything that went into my body to ensure her optimal growth and health. I didn't feel her very first flutters of movement, nor did I get to hold her close to my chest as she drew her first breaths. We were never truly 'one', but still, she is mine and I will love, nurture and defend her to my dying breath.

It's probably a good thing that she can't read my mind. Thinking of her short life thus far and trying to picture her future makes my head spin and my heart hurt. She has no clue.

I try to imagine what it must be like for her, but my perspective is tainted. I could never really know what her heart goes through, but I try. I will never forget the woman that carried me in her womb, and couldn't dream of how it must feel to grasp hopelessly wishing to picture your mother in your mind's eye and simply drawing a blank.

She knows that I am her grandmother, her father's mother. She spent the first 22 months of her life in her mother's care, mostly. Even after she came to live with us there were visits, phone calls, and video chats. Then when she was only 8 years old her mother died of a drug overdose. That was just 5 years ago.

The day that I told her, was the first time that I was stricken with shock, realizing just how differently her little brain worked. She had been trying to call her mother for 3 days. I'd already gotten the news, but it was Easter weekend and we had a houseful of company, so I decided to wait. When I told her the news, instead of being grief-stricken, she was ecstatic. 'Now you REALLY are my Mom!' she said as she hugged me tight enough to crack my ribs. My breath caught in my throat, as I fought back tears.

Her brain plays such cruel games with her memory. I knew it could happen, but there's no way I could ever prepare myself for the false memories. She's adamant that the picture her memory has painted is fact and yet it couldn't be further from the truth.

It had long been suspected that her mother also had FASD, but she refused to ever be assessed. She feared that if it was ever determined that she did have it, that she would be deemed an unfit parent. She'd had 3 other children after turning my granddaughter over to me and she had no idea that CFS had already decided that she would never be able to raise them on her own. It wasn't that she was a horrible person, she just often forgot little things that could end up being quite dangerous with children around.

FASD, or Fetal Alcohol Spectrum Disorder, is 100% preventable, caused by the consumption of alcohol during pregnancy. Consider the variables that can come into play with that. When was the alcohol consumed? What parts of the baby were being formed at the time? How much was consumed? How often? Were other drugs also being used during pregnancy?

The most commonly recognized effect is on the development of the brain, but it can also impact other parts of the body. There are over 400 other conditions that are recognized as potential FASD co-morbidities. Brain damage often makes communication and diagnostic testing extremely difficult for children with FASD, so one can go an entire lifetime trying to figure out all of the health issues they face.

As a child grows and their brain develops, the damage becomes more and more apparent. Typical milestones are not met, or if they do reach them on target, they may have lapses where the skills are lost momentarily. Behavioral and learning issues start creeping up and as time goes by, they just get worse.

Her mother had admitted that she didn't find out that she was pregnant until she was 16 weeks. She had partied every single one of those 16 weekends, drinking, smoking marijuana, and doing ecstasy. She was so thankful that her baby had been born 'normal'.

Unfortunately, that wasn't the case at all. At 2 our girl was diagnosed with ADHD - Attention Deficit Disorder, PTSD - Post Traumatic Stress Disorder (at 2!), and SPD - Sensory Processing Disorder. At 10, her professional team was finally willing to add the dreaded FASD diagnosis.

She's the sweetest little girl, always eager to make new friends. She chatters constantly, usually about nothing of consequence. It's all about the noise. Silence is an assault on her senses.

She desperately wants to be in the limelight. At first blush, she seems like any other thirteen-year-old girl. Then you hear her babbling excitedly about how she wants Santa to bring her a baby doll for Christmas.

As much as she wants to make other people happy, she cannot fathom the nuances of relationships. She gets an idea of what should make a person happy and is crushed by any kind of unexpected response. She firmly believes that when somebody likes you they want to hear from you constantly. She'd phone 10 times a day if I would let her. If you say you'll call her back, it had better be within the next 3 minutes, otherwise, she'll think you don't like her anymore.

This is where things get really interesting because somehow it is all MY fault.

'If you hadn't drank when you were pregnant with me, I wouldn't have FASD and people would like me more!'

'Ummm... Honey, I was never pregnant with you.'

'You're my Mom, so you had to be!'

There's no point in arguing. In the heat of that moment, I will never convince her otherwise. So I bite my tongue and quietly ride out the storm that rages on and on.

Once she is distracted and has moved on to some other activity, I find a picture of her with her mother and frame it. I hang it on her wall right above her bed.

When she sees it, she asks about the stranger in the picture with her and my heart shatters into a million pieces. I've tried so hard to keep her mother's memory alive for her. I recount stories from their time together and talk about how much her mommy loved her. In her mind's eye, she sees me, not her mother.

I hold her tight to my chest, wishing I could somehow fill her mind and heart with memories of her mother and the love she had for her, but knowing that I can't.

All I can do is brace myself for the storms that are yet to come. She's been abandoned and she feels it to the very core of her soul. Her heart is broken, not having her real mother here. There are so many emotions... anger, sadness, abandonment. Her brain keeps telling her it's all my fault, after all, I AM her Mom.

The last thing I ever wanted to do is replace her mother. I know I can never fill that void, but somehow we are going to have to try to find a way to mend that broken heart. I'll hold her close as long as I have to and let her know that my love for her will never die and I'll pray that it can be enough.