The Mom I Would Have Been

I first saw this  blog post on April 1st of this year while enjoying one of my very needed nights off.  It had been a very tough week emotionally.  I was alone and as I began reading this post, I realized that I could have been the one to write it (although not as well).  I was only able to read part of it that night because I began crying too hard and emotionally I just couldn't handle it that particular night.  During the previous week, Annalise and I had experienced all but one of the things this mom had written about.

A couple of days later, I wanted to go back and finish reading it and I could not find it anywhere.  Today it has shown up again and I am posting it here on our blog so that I don't lose it.  Over the past almost 4 years since Annalise began regressing, I have shed many tears over the mom that I would have been with my little girl.  I don't dwell on it, but there are moments when something happens and there is a little pain that hits my heart and I have to catch my breath.   I love my little girl for who she is, but I can't help but miss the Mom I would have been to my one and only daughter if things had been different in our lives. 

http://themighty.com/2014/08/the-mom-i-would-have-been/

"The Mom I Would Have Been

Yesterday I met a friend for coffee.  We each had our babies in tow (both little guys, 6 months old and 10 weeks old) and our big girls were at school.  Both of our older children have special needs, and the conversation ebbed and flowed from special needs school stress to sleep schedules for new babies.  As our visit ended, she mentioned getting a group together of moms with little ones, since it can be isolating to be at home with a baby.

Something in me clenched.  I hesitated to say yes, without knowing why.  And then it clicked: here I am, starting again.  This time with a different child, one unencumbered by differences and appointments . . . with him I am just a typical mom.  An average mom of an average baby with universal “problems” (nap schedules, pacifier addictions).  A mom who can watch other babies crawl around and pick up toys and think oh I can’t wait for that instead of oh . . . should that be happening already? I guess we’re late on that one, too.  The mom that I would have been, if things with Maya hadn’t been so different.

And it made me realize that parents of children with special needs suffer a double loss.  The first, the one most often discussed, is the loss of the-child-that-you-imagined . . . the loss of future dreams that might not happen (college? who knows), the loss of skills that you thought would be a given (stairs? maybe someday), the loss of health that people take for granted (I would list specialists here, but I don’t have space for another paragraph). 

But the second loss, you don’t hear as much about.  It’s more personal than the loss of the child you thought that you’d have . . . it’s the loss of the parent that you thought you would be. Where the-loss-of-the-child-you-would-have-had says I wish that my child could play catch with me, the-loss-of-the-parent-you-would-have-been says I wish that I could play catch with my child.
While I’ve shed a lot of tears over the past four years, I’m not sure that I ever realized that some were for Maya and some were for me.  But now that it’s come to mind, I’m going to sit with it long enough to mourn the mom that I would have been. 

I would have been a mom who took her baby to music class and clapped and played happily, without the little clench in my stomach as I wondered if the other moms and nannies were wondering why my baby couldn’t sit unassisted or clap or crawl like the other babies could.
I would have taken pictures of my baby’s comically messy attempts at self-feeding, and scolded her for throwing food on the floor . . . instead of giving bottles for years, doing countless oral motor exercises, and battling to get food in and swallowed, sometimes through mutual tears.

I would have had time for more playground trips, or coffee dates with other moms & little ones . . . instead of being trapped at home by our tight schedule of feeding-therapy-nap-feeding-therapy-nap-feeding-bed.

I would have set my girl loose at the playground gate and sat down to enjoy a moment to myself, watching her run and climb but giving her some space to be independent . . . instead of guiding her safely to the equipment, positioning her feet and hands and prompting her to step-and-pull-step-and-pull.
I would have watched her run up to other kids and start playing, and wondered what they were talking about . . .  instead of holding my breath when she approaches age-appropriate peers, wondering if they will shun her, if she will notice, and how I should react. 
I would have yelled after her to be careful as she took off running with friends  . . . instead of watching her giggle as children run past her so quickly that she doesn’t have a chance in hell of keeping up (and so I laugh with her and say wow! They’re fast! and pretend that watching them and laughing is just as much fun as running around).
I would have reminded her to use kind words while playing . . . instead of standing behind her and translating her noises and gestures for other kids.
I would have met and chatted with other moms, making small talk about the kids and preschool and playdates . . .  instead of shying away because I didn’t want to talk about our life of doctors and therapies with them, I didn’t want pity, and I didn’t want to make them uncomfortable.
I would have taken her on more fun outings . . . instead of taking her to so many specialists.
I would have gone to birthday parties and socialized with other parents . . .  instead of dreading the moment when I walk into the room full of same-aged children and think oh my god, that’s what 2 years old is supposed to be like?
I would have played with her and thought about playing, or maybe let my mind wander to other things (errands or what’s on tv tonight) . . .  instead of thinking about therapy goals and how to position the toys and then move her legs just so, even though it-hurts-a-little-but-it’s-just-for-a-minute-I-promise.

I would have walked her to her to preschool in the neighborhood, meeting local moms and chatting outside . . . instead of loading my tiny, nonverbal three year old onto a bus to ride to a special needs preschool downtown, then walking up to my apartment and worrying about the long ride, and hoping that the matron would be nice and take care of her if she was tired or sad.

I would walk with my girl, or sit in a coffee shop with her, or take her shopping, and pay attention to her and talk with her and never give a single thought to if people were looking at her, or wondering about us, or staring.

I would talk with her, and enjoy the often humorous observations of a toddler/preschooler . . .  instead of spending (literally) countless hours researching, developing and teaching a variety of communication systems, each time hoping that she would be able to learn how to say more things and that I could get a glimpse of what she thinks about.
Parenting would have been a much easier job . . .  but, then again, I wouldn’t have appreciated it.
I would have lamented over seasonal colds and illnesses, saying things like we just can’t catch a break! when we were hit with a few in a row . . . instead of knowing that we were kind of catching a break the whole time by not having any larger issues to deal with.
I would have celebrated milestone moments with enthusiasm and pride, but lost the magic of those milestones quickly . . . instead of marveling at the unbelievable motor feats involved with something like sitting up unassisted, or jumping. (Seriously---jumping----did you ever think about how crazy it is?  Somehow you just will yourself up into the air and your legs make it happen. Unbelievable.)
I would have complained about the hard work of progress---potty training woes, a willfull child who dresses themselves in mismatched or seasonally inappropriate clothing, a kid who jumps off furniture or climbs onto countertops . . . instead of recognizing the feats of strength and coordination and development that underly each one of those things.

I wish that I could have been that other mom with Maya.  We would have had a ton of fun, I think, the Maya-that-she-would-have-been and the mom-that-I-would-have-been.   But I certainly love the Maya-that-she-is . . . and without her, I wouldn’t have become the kind of mom that she needed, a mom better than the mom that I would have been.

The mom that I didn’t know I could be."
            Dana Nieder