Wednesday, November 30, 2011


Some days (most days?), I feel inadequate as a mother. Here I have this amazing little girl who needs so much from me, and I always feel like I'm coming up short. Am I her therapist or her mother? There simply aren't enough hours in the day to work, take care of school stuff, clean the house, cook dinner, and take care of her every need... So sometimes I skip out on one the therapeutic activities I had planned, or I let her play in her room alone too long while I write a paper instead of playing with her, or I can't do much more than feed and diaper her because my head and my emotions are in too much turmoil, and I can't function at a higher level.

C's overall "umbrella" problem is that she has an unbalanced translocation of chromosomes 7 and 8. She has a partial trisomy (extra material) of 8, and she's missing genes on 7 that are crucial in spine and brain development. Because of that tiny little chromosomal mix-up, she has a whole slew of medical problems encompassing every major system in her body, and those have resulted in physical and developmental disabilities. There is no name for this particular genetic anomaly because it's incredibly rare--something like 15 recorded cases in all of recorded medical history, and 4 of them are in my family. I was told by doctors that there was no way I could be carrying the anomaly that my older brother carries, and yet, after C was born, BAM! Reality smacked us in the face. I had defied all odds and brought into the world a little girl whose chromosomes are all out of whack, and we have no idea what to expect from that, medically or developmentally.

In short, it's MY FAULT that my daughter has disabilities. MY chromosomes were the ones that were screwed up and passed on this anomaly. It wasn't just this pregnancy, it was the two pregnancies that miscarried (presumably because they were missing a huge chunk of genetic material), and it's 75% of any pregnancy I could conceivably carry. I didn't choose to carry this or to pass it on, but it's really hard not to feel responsible when it was your body, as a mother, that failed your child. Then there are the added bonuses like C's bilateral colobomas, which happened during fetal development and don't appear to be linked to the chromosomal situation. Just a fluke because, yet again, my body failed her.

Being bipolar is a daily struggle. With the right combination of medications, you can go days or weeks without even remembering your diagnosis, but then a day comes along where you're just disproportionately sad for no reason, or you have a manic episode and spend too much money and can't sleep and talk too fast because your brain won't slow down. Those days, it feels impossible to keep your head above water, much less take care of a completely dependent young child. The PTSD hits even harder, hurling me into flashbacks or keeping me up all night with night terrors, leaving me walking around in a raw emotional state and a complete mental haze. I just pray that my screwed up body didn't pass along the mental illness along with the crummy chromosomes. I wouldn't be able to take knowing that she suffered emotionally in addition to the many other challenges she faces.

Then there's the anxiety. I know I have to be her strongest advocate in healthcare and education, but it's tough to be assertive when calling a doctor's office triggers a mild panic attack and pushing people has never been your forte. When people aren't cooperative in getting my daughter what she needs, I have to fight every instinct in my body and, against my nature, insist that they listen to me and take care of my daughter. I have to hold my breath and pray sometimes that they won't see me shaking, because I have to appear calm and tough when fighting for her. It's really difficult!

She's an awesome kid, and I love her with all my heart. I treasure her every action and sound, and I melt when I watch her sleep and listen to her slow, steady breathing. She is my baby, the love of my life, my world... But sometimes the outside world steps in and makes showing C what she means to me a nearly impossible task. I don't want her growing up with a mother who is sometimes emotionally vacant or distant. I want her to feel loved at all times and to know she can count on me for anything and everything. But can she? I doubt my abilities as a parent, because I made her this way and can't fix her, and because I'm struggling with so much of my own, it's more difficult to be the mom that she needs. Of course, her needs always come first... But sometimes, I just feel I don't have enough to give. Sometimes, I feel like I'm failing... And that's a tough burden to carry.


  1. I'm sure you are doing so much for your child.

    I get it, though- I'm having my own moment of feeling like I'm not doing enough.

  2. Oh honey...

    You are doing so much, and you will forever feel inadequate-because that's what we moms do.

    Before I had a non NT kid, I felt the same way. Even when I just had one kid, I felt that way.

    Yes, you are her parent. And yes, you are her therapist. You wear many hats as her mommy, and many more as a student, a wife, a friend on Twitter. The one thing you are not, is perfect, and that's not for lack of trying.

    It's OK to feel this way. It's HEALTHY to feel this way, because, frankly, none of us can master the many hats that being a parent of any child, much less a Special Needs child, requires.

    The truth is, though, you are not failing. You are getting an education so you can be an awesome teacher, and take care of C if needed. You are meeting her therapeutic needs, and trying your hardest to juggle those with your own needs. You are doing the best you can, with what you have, and I, for one, think you deserve applause for it!

    Please know that you are not alone. There is a world of people out there who will lift you up and support you during your times of need. You have only to ask.

  3. Thank you so much for the words of support. I know parenthood is among the hardest and most important jobs out there, and everyone feels like they've bitten off more than they can chew from time to time... Some days, it's just more of a struggle than others. :)