There is an opportunity for healing here.
Recently I began following the amazingly beautiful blog of, Kelle Hampton. She’s a professional photographer. Her pictures are gorgeous. She has a little tow-headed three year old daughter, and the most exquisite baby girl born just a few months ago, with Down Syndrome. The story of Nella Cordelia’s birth sucked me in completely, and I’ve been reading Kelle Hampton’s blog ever since.
This mom is way more insightful than I was at her age. She is doing motherhood her own way, not listening to people who warn her how hard DS is going to be. She is a positive person. I believe in that, you know? It’s like, my thing. Law of Attraction. What you focus on gets bigger. My success is measured by my joy.
But lately, when I read her blog, (and seriously this has nothing to do with her) I can’t stand her. And not just because she looks great in a bikini a few short months after giving birth. Her beautiful story is bringing up so much pain for me.
Her little three year old, and the fun they are having, the sweetness and light of their relationship. It makes me cry. Because I wanted that. I wanted a happy little three year old girl. And my sweet little girl mostly just screamed at that age. And sometimes it is hard not to think about how much we missed. We weren’t having faerie parties. We were at occupational therapy, and autism doctors, and dozens of other therapies(not covered by insurance), etc. I wanted to be that mom. All laid back and fun, and crafty. But I was wasn’t. I felt like I was racing for my daughter’s life at the time. My brow was permanently knit. I wasn’t at the beach “sucking the marrow” out of life. I was worried. I was swimming in fear.
And then here is Nella. The most adorable little baby. I don’t know this family at all, but that little baby has my heart. I believe she will have the heart of every person she meets, her entire life. Her sweetness just oozes off the page of her mama’s blog. And it brings up another hurt.
Riley will never get the instant benefit-of-the-doubt Nella will receive.
It took years to get a correct diagnosis for Riley. I was so very alone as a new mother. No therapists coming to the house. No support from our pediatrician. No support from anyone, really. We had moved to a new state, and I hadn’t one friend nearby to bounce things off of. When Riley started having severe meltdowns, there was no one to hand her off to. How do you ask a casual friend, a neighbor, someone you don’t know well, to look after a child, who by the way, won’t stop screaming?
And this other blogger? She has such a solid support system. She has a whole huge community both physically where she lives, and on-line, celebrating her very special baby.
No one ever celebrated us. No one ever said, “Hey, you have a kid with autism, and it is going to be such an amazing ride if you allow it to be.”
No circle of women gathered around, treating me with reverence.
Todd did his best to support me, but he hadn’t a clue either. Both of us, relatively well adjusted ’til then, had panic attacks for the first time in our lives by the time Riley was three.
Oh how my heart goes out to those younger versions of ourselves. Oh that we managed to be kind to each other, under those circumstances, it just brings a lump to my throat.
And I thought I was okay. I thought we were in a mostly good place. But when I start finding fault with people, I have to stand back and ask, what’s hurting? Seriously, what’s going on? Especially if my fault with someone is that they are “too positive.” That’s just kind of funny, given what I believe. Oh ego, you are so very clever.
If given the choice, I wouldn’t trade the daughter I have for anything. She is mine and I am hers, and I do believe we’ve been together for lifetimes. She is the exact daughter I was supposed to have. I was meant to be her mother.
I had this very vivid dream back in 1994, before Todd. Six years before Riley would be born. A baby sea otter was taking me on an ecstatic ride, gliding me through the ocean. The love I felt for this little otter was pure God force. I’d never experienced anything like it. The love was so vivid, so powerful, so raw and wild, I woke up, my heart beating fast, and wrote it down. The next day I took the only medium I had at my disposal, and drew the feeling in crayon.
I forgot about the dream, tucked the drawing away somewhere, but the instant Riley was put in my arms it flooded back to me. It was her! The baby sea otter I loved. The baby that would take me to wild and amazing places. The soul friend-sister-daughter-mother who would lead me through the fire. I thought the drawing got tossed, but found it last year in a box that hadn’t ever been unpacked in several moves.
I have it framed in my office now. This drawing reminds me, Riley and I are doing important work here. We’re doing things I can’t even wrap my mind around yet. Kelle Hampton is doing her own important work. To entertain the thought that her life, is somehow better than my life? Source does not agree. And when we think thoughts that go against the truth of the Universe, it hurts! When we forget how absolutely vital each one of us is, to All That Is, that’s when we suffer. And when we suffer, we start finding fault with others.
And you know what? I never could have figured all of this out, if not for Riley and the places she has taken me. Loving her, has caused my heart to shift and open a million times wider than it ever would have. My compassion muscles are really big now. This includes having compassion for myself, even when I’m ugly. Even when I make mistakes. Even when I think petty thoughts. But I can no longer leave things there. My soul won’t tolerate it. I have to dig deeper now.
So, my apologies to Kelle Hampton. Thank you for giving me this opportunity to grow. Keep “sucking that marrow” Kelle. You and yours are so very beautiful.
And we are too.
” My compassion muscles are really big now. This includes having compassion for myself, even when I’m ugly.”–
This is JUST WHY I believe Source put you on my path. Just so you know. This is something I also have needed to learn, and you have helped, because you share in such a brave and open way.
You have such a beautiful mothering heart for both your kids. And you have such a beautiful, striving heart for understanding life. But what I love most about you, is that you have that striving heart, AND you are willing to say when you fall short of what you are striving to be…Because being perfect is not the goal. Being perfect is not what is so honorable about you, friend. It is all the rest. It is the way you keep SHOWING UP– with your beautiful, strong, fragile, willing heart.
That is the damn truth.
🙂
I would never had been courageous enough to write this before but there was a period during which I felt the same about your blog entries. They were so positive and full of gushy news about all of Riley’s accomplishments. My child is younger so it’s not fair to compare (or compare any children for that matter) but it is so hard not too.
Ditto Amber. Love this post. I’ve been following Kelle’s blog, too, since you introduced me to her. Envy? Hell, yeah…and I don’t even have a special needs child!
i have always LOVED riley’s smile.
So beautiful indeed. I love these sorts of realizations – and you describe them so well. I had a little grief pang this weekend when I saw my sweet toddler nephew – such an easy, typical child. I am so, so happy for my sister, and relieved, but there was that little grief inside me, gnawing away. This post helped me to put that in perspective – thank you. And love.
Your beauty goes deep, my friend.
You bare your heart, over and over, even the petty thoughts and less-than-perfect moments. Laura Munson says sometimes you have to be willing to be misunderstood. That’s not easy, but you forge ahead, lighting the way for others.
EVERYBODY has ugly moments, they just may not blog about them.
My ugly moments come right before and after right heart caths for Parker.
And you can bet your ass you are beautiful.
And a bikini? Yeah, I’d all kinds of envy about that too. ;D
I’m the editor over at 5 Minutes for Special Needs. I’d LOVE to have you share this over there.
There are more Mama’s who feel like you than you may realize. Your post gives permission for all Mom’s to let these feelings be validated, right along with the love they have for their child.
Tammy and Parker
http://www.prayingforparker.com
http://www.5minutesforspecialneeds.com
@ParkerMama on Twitter
YAMH.
There is so much beauty in this piece. Your honesty. Your love. The beating of your very compassionate heart. Your daughter. You. The love that shines through it all. Thank you one more time for your truth and the courage I know it takes to not only know it, but also to share it.
omg-i am totally freaking out right now bc I could have written this post! i think ive been writing something similar in my own head for weeks. I too got sucked into kelle’s blog after reading nella’s birth story and i find myself obsessing/stalking her blog and HER… loving her photography and writing. She’s addicting as is nella. then, recently, i had similar reactions as you describe: why is it that she had umpteen friends and family piled in her hospital room, staying overnight with her after nella’s diagnosis and i had no one? why is it my own family cares so little about me and even less about my daughter who has autism and severe cognitive impairments? why is it that im bat shit crazy while kelle is pedicured with her cute shoes, 100$ hair cut, photography career and stunnning sense of style? And the final shame: why am i so jealous like a highschool drama queen with nothing better to think about?
Theres always something bigger to it…as you described in this post. It was so weird that you wrote about and felt the same way. But I know this: nella will not be an infant,cute and tiny forever. Someday, she’ll be 13, 18, 32… life will get really hard for kelle and i dont really think she knows yet how different it gets once they start growing up and the differences are more highlighted. My heart breaks forher and i hope she carries the same positive spirit with her when the reality of the situation really sets in.
thanks for always keepin’ it real…:)
Umm, yeah, umm, haven’t been to Kelle’s blog in a while. Loved the birth story, but like you, the happiness and ease of just living makes me so sad about my own life. My now 20 year old daughter was so hard at 3. Seizures all the time, no diagnosis, no friends, no parties, no nothing. She’s only been invited to ONE birthday party her whole life. ONE. It hurts like crazy if I think about it, so I just shove it back down and wait for heaven.
I never have or never will look good in a bathing suit, so that’s why I live in Iowa, and not in Florida.
Anyway, keeping it real, that’s what you do, and I miss you guys.
And your photos are very nice, I always love to see your beautiful face and those of your family and Jingle.
Love.
Love.
And more love.
Rich. This post. Rich, rich, rich. So much to absorb, so much deep marrow richness. Thank you.
Your drawing reminds me of something Lewis Thomas said in Lives of a Cell–that we humans are the otters of the universe. It is our job to play and be happy. And for the umpteenth time this week, I’m reminded of that long-ago academy-award-winning film, Life is Beautiful, and all that man endured while insisting on being not just happy, but joyful. How did he do it?
I wonder, does Riley enjoy water? I’m sure you’ve posted on that before, but I’m drawing a blank just now. Does she find comfort in water?
Your words are very poignant. Thank you for being raw and real and coming back to a place that is challenging and good. Your family is beautiful! We all have ugly parts that come out now and then…and that’s so very necessary. It’s what we learn in the end. My heart goes out to anyone who is on an unexpected journey…they are all different, but we all learn so much along the way. Riley is beautiful!