I was never one of those mothers who wished for a moment of peace and quiet. Well, maybe I was, but that was long before the birth of Shalebug. When he arrived everything shifted. The absence of normal that came with his disabilities had me longing for the mundane. I longed to hear a baby cry. To see him scrunch his face up in anger and to see that same face smooth out with a big baby grin. I longed for spit up and messy diapers. As he grew I longed for squabbles over dinky cars and watching episodes of Thomas the Train over and over again until I thought I would lose my mind.
I longed for a regular kid. I felt jipped that I was missing out on all the experiences that culminate in parenthood. His brother and sister were such fabulous little pains in the ass, I was heartbroken that I wasn’t going to experience that type of childhood all over again. I felt robbed. And more so, I felt that Bug was cheated in the cruelest fashion.
Those feelings lasted for a while, clinging like a sock to a towel after being pulled from the dryer. I don’t know when exactly my perception shifted, but suddenly I was no longer grieving his (and my) losses, I was celebrating his gains. When Fric and Frac learned to sit, stand, speak, and most of all, potty in the big person’s toilet, I celebrated. Boo celebrated. We felt the parental high that comes with watching your child grow and overcome the milestones before them.
With Bug, there were very few milestones. I was given a calendar to mark his first year. First smile, first grab of rattle, first step, first word, first shots. I didn’t even get to use his first tooth sticker. His tongue was stitched to his bottom lip, pulled over his lower gum, so that he wouldn’t swallow it or choke on it. It was surgically released when he was 13 months old. When I saw him for the first time after that surgery I was amazed to see two white little teeth staring back at me. Hidden this whole time, under his tongue. I never even knew.
Instead of the traditional milestones we ended up making our own. The first time he didn’t have cardiac arrest during surgery. The first time he went through the night with out his oxygen saturation monitor going off and scaring the shit out of Boo and me. The first time he’d let me suction his drool without him biting down on the hose. Sounds scary and foreign, I know, but it really wasn’t. It was just different.
Instead of looking forward to his first step, we looked forward to him holding his head up. (18 months.) Instead of toilet training we celebrated him being able to sit on the floor with pillows around him. (25 months.) Instead of words we celebrated a tentative high five. (37 months.) And when I say celebrate, I mean break out the balloons, phone the in laws, pour the wine and raise the rafters celebrate. No one thought we were silly or overdoing it. Because for this small, wee man named Bug, it was a milestone. Overcome with a grace and perseverance that I have rarely seen in a human being. It overshadowed his siblings accomplishments with quiet dignity. A little boy who struggled to breath, to eat, to move, but never gave up.
It was, and is an amazing testament to the human spirit. It became addictive. Not just for Boo and myself, but for Fric and Frac as well, who revelled in watching their brother take tiny steps towards independence. For Boo and me, we marvelled at how lucky we were, to be given an opportunity to witness these small little children morph into people. We were blessed. Not only did we get the experience of watching Fric and Frac conquer the world of toddler hood, but we got to enjoy the journey that Bug took, a journey most people never witness or understand.
It was very addictive. And our family is suffering the symptoms of withdrawal. For a boy who never spoke, he made so much noise. He filled up the spaces in our lives. His absence is deafening. Fric and Frac miss him, in a way I will never understand. Boo says he feels as if there is a hole in him that will gap open forever, a wound that will never heal. For me, it is all of this and more. When Bug died, he took my heart with him. I have had to relearn how to live, love and breathe again. And every morning, I have to start all over again.
When Boo was home this past weekend, we dumped the kids on the in laws got a babysitter, and went for some mommy-daddy quality time together. That’s right, we went shopping. The true romance of being married almost a decade. Nothing says love like being able to walk hand in hand in a crowded mall and oogle the younger generation and their perky boobs.
As we sat and licked a frozen yogurt cone and discussed the merits of diamond wedding bands versus bigger diamond wedding bands, a young man and his aide wandered through our line of vision. His gait was halted, he stuttered and his hair was slightly greasy with a rooster tail sticking up in the back. His aide was a middle aged woman who refused eye contact with the shoppers around her. She looked tired and haggard. The young man was enthused by the life buzzing around him. He and I made brief eyecontact for just a second, and the hairs on the back of my neck stood up. He smiled widely before his aide hurried him past us.
My husband was watching me and him thoughtfully, and when the man passed Boo noticed a tear welling up in my eye. He grabbed my hand and squeezed. I licked my yogurt, trying to quell the rush of emotion that threatened to break past the dyke. After a moment, he commented that when he sees a handicapped person he wonders what Shalebug would have been like at that age. Would he have worked as a greeter at Walmart? Would he have been able to cobble steps together or be pushed around in chair. He just wonders.
I digested this for a moment. When I see a disabled person, I too, wonder about Bug and the life he was shorted. But mostly, when I see a disabled person, I find myself blessed to be able to see them. For before my boy, I wouldn’t have made eye contact. I would have felt pity for them and more so for their aide; I would have felt slight disdain and a sense of relief that I didn’t have to shoulder such a burden.
As I watched that man and woman slowly shuffle down the mall, I felt awe. Awe for the obstacles that man overcame, and awe for the obstacles he still faced. I envied that man, and his life and wondered briefly why he made it to adult hood and not Shalebug. But mostly, what I saw was a little boy with long wavy blonde locks wobble his way around his mom with obvious delight. I remembered letting him roam in the mall and him losing his balance and faltering against an attractive woman. Him steadying himself with his small chubby hand on her ass. Her look of surprise and my embarrassed laughter as I scooped him up and apologized for my little ladies man.
When I see a disabled person, I see all the joy my boy gave me and my family. All the hope he inspired and still inspires. All the love he blessed us with. I see the possibility for greatness, even if it’s a quiet greatness, one not readily acknowledged by the masses.
I squeezed my husband’s hand and shook myself out of my reverie, and told him, “I see grace.”
And I do.
Thank you Bug.
54 Comments
Thanks to your blog and others like it on the Internet, I see grace too, where before I looked away.
Thank you for sharing your pain and your love with us.
Wow. You’ve made me speechless again.
You just keep amazimg me. You have opened my eyes to a life on the other side of the fence. Thank you.
That is beautiful. Thank you for sharing it!
Iwas a respite carer for many year to so many beautiful babies and children, many who lived only months, it was such an honour to be in their lives, my heart would weep when I saw people pretend not to see these children and some of the comments that were thrown our way, shattered and enraged me. To be touched by children like these is the highest honour. Beautiful post.
Just found your blog through a complicated linkage chain…
Your post, and your boy, are both so beautiful. Thank you for sharing him with us.
It’s amazing how grief can inspire creativity. I like to think of it as a gift from those we have lost.
T, what did I tell you about making me cry at work? Naughty, naughty.
Good thing I heart you so much. And this post. Thanks….
Growing up in the summer months Jamie and I always worked with kids with special needs. I looked forward to my summer months and being with them. They were such a joy. I’ve always wondered what happened to those kids.
I have friends who work in group homes and I love going to visit. They are some of the funniest guys I’ll ever know. They’re such a family…and of course they love me. I mean, seriously. What’s not to love?
Just discovered your blog.
What a beautiful post.
If it wasn’t for someone like you, or for my son going to a school where half the children are handicapped, I would probably be averting my eyes still.
I don’t know why we do it? Is it because it’s unfamiliar? Is it that it makes us so uncomfortable to think about a person drooling and shuffling and moaning their words out that we’d just rather pretend they’re not there?
No longer for me. I see the beauty and grace (as you so eloquently put it) in them. I view them as I’d want to be viewed: alive, full of sass and free!
Thanks to your blog, I have perfected the art of typing through tears.
This is a piece that should be published so that even more people have a chance to read it.
We all should be grateful for those “little” milestones, even in our typically developing children — It was my joy and pleasure to work with parents of kids with special needs because they never let anything go by without praise. It was a head nod — an arm raise — and it was MAGNIFICENT.
Oh how loved they are. Oh how loved your bug is.
Grace, indeed.
Being relatively new to your blog, I didn’t know. Now I do, and I think you’re even MORE amazing than I already did.
Simply beautiful post.
That was beautiful. Too beautiful for me to make some off-color comment, which is saying a lot. You know, thanks to you I don’t see the handicapped the same way as I used to. Thank you for that.
This is beautiful. So is your Bug. *hug*
**Big hugs for you**
Beautiful.
Oh T, what a beautiful post! ecr is right, it should be published but since I am not a publisher I’ll just send the link to a few of my friends.
Big tearful hug to you and your family!
T, I had never seen pics of your Bug before - he is absolutely beautiful. And the writing he inspires in his mom is beautiful, too. Someone needs to give this a perfect post award…
I am a recovering Band Geek, and each year in high school we did a concert for a large group of people with various disabilities, and every year, it was both the most meaningful to all of us musicians and the best concert we ever gave. Since then, I ALWAYS look in the eyes and smile, and even say Hi when I can. Thanks for reminding me what a great gift the ability to do that is.
Interesting. I’ve never actually met you but I certainly see grace every time I visit here. Thank you so very much for choosing to continue living your life an an exceptional parent.
Oh yeah! I love the pictures showing the Shale Bug with his beautiful feet. I only know of a little about how difficult it was to get them that way.
Wow T, you amaze me. That woman at the mall had a very lucky ass to have propped up somone so special even if it was only a second. I recently read your other blog and was humbled by the fact that you could even be coherent enough to have written the things you had. Reading your journey with Bug, I have not only learned not to avert my eyes, but to really see behind the physical. Thank you.
thank you for sharing Bug.
thanks for letting his beauty grace us, too.
For you to be able to live your life this way shows the kind of woman you are. You, my dear, are absolutely amazing. And so inspiring.
Every time you write about Shalebug, about your loss, your family’s loss, I feel honoured. Honoured to be able to read about it, to share it with you, to know what it’s like. It’s hard to write like this, I know. But thank you for these posts, T. Thank you.
Wow. Thank you for that. I’ve never met you yet your words have tears streaming down my face as I read your beautiful words about your son. Thank you so much for sharing that.
Picture him dancing now and waiting for you later.
It’s all a circle, you know? And one day the circle will be complete again and fric and frac will be on either side of him, right where they wish to be.
You were a lucky family to have such a treasure, yes?
Oh, T. You are amazing. Amazing. Bug gave you that grace to pass along, and you do it so well.
You made me cry! I am always amazed at Katie as well. She gets up every morning and tackles the day, even though she’s often unsure of why things happen around her. She always smiles and waves at people and people usually smile and wave back at her. She brings sunshine into the world and it sounds like your little guy did too. I’m so sorry you lost him. I can’t imagine my life without Katie.
Amazing. Thank you for passing that grace along. Thank you for seeing and for allowing us all to see a little better through you and The Bug. He’s beautiful.
What an amazing gift you all shared.
Beautiful.
In the words of the kitty blogosphere… I’m leaking now.
I’m not sure Grace could be better defined…
Oh, T.
My nose is already so wicked stuffed from a cold and now I’ll never be able to breathe.
Your way with words paints such a picture of your experience. It helps so many to relate. It is a gift and a blessing.
Shalebug was with you and your family for a reason - no doubt about it. I’m so sorry he couldn’t stay longer.
I love the photos! Your Bug looks so lovable, and Fric and Frac are so cute, too.
A brilliant, touching, wonderful post, T.
Thanks. You made me cry. REALLY CRY this morning. I need to do that from time to time.
Oh, Jesus, you’ve done it again. You’ve gone ahead and made me cry. Your paragraph about finding Bug’s two little teeth did it, sending those hot salty tears right over the edge.
Thank you for sharing, your words AND your pictures. I’ll say it again: I simply cannot fathom the loss, can’t even try because the trying is too painful, but here you manage to take your grief and wonderment of the miracle of your son and turn it into the highest art.
Again, thank you.
I lurk on your blog frequently and I think this is the second time in a week that you’ve made me cry. Thank you for sharing your bug with us.
Thanks for sharing your bug - I’d have proudly propped him up for that brief moment! You were blessed to have him and he you. I too see grace and beauty where others are sometimes afraid to look - its good to know I’m not alone. Right on T! (now I’ve gotta go wipe my eyes..)
Thank you for another great reality check.
Reading this, I can’t say that I felt grace because I don’t think that kind of grace can be experienced by someone who has never walked in those shoes, and I haven’t firsthand, only vicariously through your blog(s). But I do know now that when I see a handicapped person, I will not look away. I’ll smile and think of their milestones, and of you and your family.
Publish this.
A lovely tribute to your son and people with disabilities. Truly moving.
That. Was so beautiful.
Thank you so much for sharing Bug with us. For sharing teh love your family has for him and his memory and what he meant and still means to all of you.
His spirit lives on and benefits anyone who reads your loving words.
[wipes tears]
oh honey, you have so done Bug proud. He was a fine little man and had fine parents.
Sometimes our bugs are taken early - mine didn’t make it to birth.
Keep making eye contact sweetheart.
Oh, and I LOVE the piccie of Bug with Fric and Frac.
[hugs from across the pond]
cq
Oh, T.
When Mr. C and I see such sights at the mall, we find each others hands and squeeze, knowing we are blessed.
Thank you for showing me that the loving parents attending those children are also blessed.
Blessed with grace, indeed.
This was fabulous! Such a wonderful sharing.
You are wonderful, RNM, thank you so much for this beautiful post!!
The smartest thing I can do is bookmark this post for all time. We were faced with some tough challenges - and I regret to say this, but I feel blessed that our toughest challenges were all trivial in comparison. I pray your creator brings you a million times rewards for every day of your journey.
You will never know how many lives you touch with your words. Beautiful…thank you.
Carrie
You should write a book. You speak the plain and simple truth and do it well.
Mimi
You have such a way with words T.
And you make me bawl everytime you write like this.
you really did it to me this time, t.
you are grace.
This was just so beautiful. What an amazing mom you are. I am at a loss for words, and that rarely happens.
Thank you.
I need a tissue. That was just beautiful.
coming to this much much too late, but cannot leave without leaving a comment, a touch.
thank you for this. thank you for letting me see and understand grace. your writing is beautiful and a testament to this lovely boy.
Easily the best, and most touching post I’ve read on any blog. Thank you for sharing your words and your memories.
Thank you for a different narrator in the corridors of the mall and sidewalks of the world.