acceptance is a fickle beast

Sometimes I'm totally okay with my ::ahem:: curves...

and I think to myself that I'll single handedly bring the sexy back to the my-hips-don't-lie-when-they-holla-I-birthed-three-kids-one-without-anesthesia-against-my-will juicy look! Well...me and those hot Lane Bryant girls...

Other days...

I'll most likely be hatin' on every blessed with a fast metabolism chick I see. And start leaving "how to become a plastic surgeon in 6 months or less" brochures on Jonathan's pillow. I ain't too good for lipo, ya'll!

Cause acceptance is fickle like that.

Some days I'm strolling the aisles of Target and think to myself that I totally belong here. America. The beautiful. The world class medical. The gobs of clothing to try-on-ible!

Other days my heart clinches as I'm haunted by memories of Swahili voices...belonging to dirty. Lovable. Little. Tanzanian faces. And I just want to scream with all my might that I belong THERE! My life wasn't supposed to include unlimited Target time! And gobs of clothing. And the need for world class medical care. My little girl dreams never included any of that! I was meant to bronze under the African sun. My skin tone is perfect for that! I should be hugging dark skinned children. Singing pambios. And I want to scream that I'm not okay with how the Road has turned.

I'm telling ya...acceptance is a fickle beast.

Some days I think I'm finally. At last. Moving towards Surrender. Quietly. Gracefully. Willing to embrace each day as it was
Written. And on those days I may even think to myself that all I really want is for Trevy to be happy. If he's happy...that's enough.

Only sit on the bleachers the next night. Playing cheerleader for Toby's team. And find myself concentrating on the cute little guy toddling around. A teammate's baby brother. I can tell by his size that he's close in age. To Trevy. Actually...younger by two months. I know because I asked his mommy. And I tell myself not to. But it's like a magnetic force that I can't resist. And so I start mentally check...check...checking...just how behind Trevor is. And my heart is breaking inside my cheerleader facade. Even as I toss the baseball to the little guy. Because he asked me to "fro it" to him. With the bat cocked & ready. And I sit there hoping to God that I can keep it together for the next five innings. Because as it turns out happy may not be enough after all.

And acceptance shatters into a million tiny little pieces.

One day I told Ms. Speech that I didn't care how. Picture Exchange. Sign Language. One of those new gizmos where you press the button and it's your voice for you. I didn't care how. I just want Trevor to be able to communicate with me. Ms. Speech was moved. Inspired...she said.

Of course...she didn't see me later. On a different day. In a puddle on the floor. That I had just punished with my fists. Because I want...crave...to hear his voice. I want to hear him say "mama". And know without a shadow of a doubt...that he knew what he was saying! That he meant to say it! I want to know that he clearly understands when I say "I love you, Trevy". And I want to hear him say it back! With words! Is it so wrong that I want to hear his voice?

And I can't help but wonder if Ms. Speech would still be inspired if she knew that acceptance is a virtue that comes & goes? Ebbs & flows...

Some days I feel a sense of Peace. The kind that Passes Understanding. Even as I know deeply that Trevor's miracle may not be here. It may be There. With Babu. And Jesus. And I can mull it. And roll. Around and around in my mind. And not once feel angry. Or bitter. Or sad. Just Peace. Sometimes there's Peace...

But I can't seem to convince Peace to hang out forever. And pretty soon I'm a sobbing crazy mess at the computer. Researching for hours. Writing gloomy posts. Emailing wild ideas to Dr. Neuro. And even Dr. Rockstar. Because I'm consumed with passion to find Trevy his miracle NOW!


I started this post last week. During a pensive swing. Ironically...today has been a nice day. Topomax is being kind to Trevy. We're seeing a decrease in seizures. And an increase in happy babbling Trevy. And skills that have been lost in seizure land for months...are finding their way to the surface again. Each one making the happiness bubble and gurgle from the heart up to the corners of our mouths. Making my crows feet squawk.

It's amazing how a simple "awww duuuuuh" can have me floating on cloud nine! That was "all done" for those outta the baby talk season of life. He hasn't said that in MONTHS! And he's never said it together before. We've always just got the "awwww" or the "duuuuuuh". Today that changed.

Being all sappy. And feely. N' stuff. I did a happy dance in the kitchen that shook the house! Trevy loved it!

The thing is. And this is going to sound entirely too melancholy. I took a personality test once...and it told me I'm Sanguine. Just so you know...

Anyway...the thing is...ever since Trevor's diagnosis the joyful seems always to be shadowed by the sad. It's not that I don't feel joy. I do. Thus the happy dance in the kitchen. I just wonder if my heart lost the ability feel...really...truly...deeply...unadulterated-ly...light-hearted?

I would love the wrap this post up in a nice little life lesson. Give you the key to the hows...and whys...and whens...of acceptance.

But the truth of it is...I haven't figured acceptance out yet. I'm not really sure what it means for me. In this situation. Particularly because this situation is SO unknown. Some kids do, you know. Overcome all the odds. But what I don't know...is will Trevy? Or will he be stuck cognitively at 15 months forever? Or 3? Or 10? Limbo is a sucky place. Which is why I laughed and cried my way through this post. Plus...I'm not sure where "giving up" and "acceptance" meet. Part of my struggle is just that. I don't want to give up. I've always been the passionate (fighter) type. But nor do I want to miss the joy that Trevy brings...because I'm so focused on the battle. If that makes any sense at all...

But I promise when (if ever) I finally grow into acceptance...I won't be greedy...I'll share what I've learned...

Until then...I'm going to (try to) make the best of happy Trevy that Topomax is giving us. And just keep breathing...


JSmith5780 said...

So where did the confident Mommy go who wrote Ken to tell him it gets "better"?? OK, so I am further than you both. Don't either of you give up. Look how many years Austin has fought. It's a darn slow climb, but he keeps climbing. Your boys will too!

baby trevor's mommy said...

I know..right? I should probably see a doctor about this! *smile* But seriously Jen...I love you! You have been such a faithful friend...and support...and well of encouragement. Thanks...


JSmith5780 said...

You're entirely welcome :)

~Mama Skates~ said...

makes total sense - hard balance, but u're doing it gracefully! i love reading ur thought - ur true feelings...hearing the truth when i come 2 ur blog, not just reading what u think we want 2 hear...keep it up girl - i hope finding a balance gets easier 4 u - i can't imagine how hard that is!


Tara - Aidan's mom said...

I know where your at danille - I'm still there myself. It's hard when you have a 14 1/2 year old that still is undiagnosed and keeps the medical world totally stumped plus trying to figure out what's constantly going on with Aidan. What's the chance of having 2 kids that the medical world CAN'T figure out??? With those odds I probably should play the lottery more often :)

blogzilly said...

Had a super long response. Then thought about it, saved it, then deleted it. I'm wishy-washy today, because my anxiety is in overdrive.

But it was a WOW blog today D, you done good.

Word Verification: glarize

Adesta said...

Yeah for Trevy saying Awwww Duuuu. *doing a happy dance with ya* This is great. I'm glad to hear that the Topomax is giving Trevy some relief and allowing things that were repressed from the seizures re-emerging.

I'm sending {hugs} to ya D...it sounds like you could use a few of those today. *smile*

Sophie's Story by Elaine said...

You made me cry on so many levels. Your feelings are so real to me. As if I could have wrote that post (if I was half the writer you are). It is so hard not being able to verbally communicate with your child. To watch other children around you surpass your child. Our children aren't the only ones entitled to meltdowns. I have them. The feeling of helplessness, frustration and everything else. It's hard to deal with EVERY SINGLE DAY. Because it is hard to accept what is unknown.

And then I cried when you wrote that Trevy said "awww duuuh". He put 2 words together!!! That is simply amazing!!! A huge milestone!!!

Liz said...

I totally agree with Elaine.....like I could have written that post if I were a good writer. We are not all that far into this yet, but all I feel right now us that I know I will never be able to "give up" the fight, and does that mean I will never be able to enjoy her as she is? I feel like I know I enjoy our time together, but I will always be trying to figure out how to make her "better". And for who? Will she know?Anyway I need to move on now as I am bawling my eyes out while she sleeps off a cluster in my lap.

Thanks for sharing so much of yourself.

Andi said...

Oh my. How I broke down when you compare Trevy to others. I have the hardest time just seeing my nephew who will be 1 in July. As much as I love seeing him, it's like a big glowing sign how much he excels at things that should be so easy for Emma. It can make family get-togethers difficult for me.

Topamax has been what Emma's been on since 12/07, right after her IS diagnosis, among other things. So far, it's worked pretty well. Glad it's working so well for you!!!!

Holli said...

I don't think any amount of communication can replace the longing to hear our babies' voices.

It's horribly real. And totally valid. We had that dream before we even knew them. Before they were even diagnosed.

Just like you, I'd love ANY type of communication. But to hear a true Mama. That will be a dream that won't stop 'til I hear it.

AND...it sounds as if little Trevy is well on his way to the verbal world!!! Go Trev!!!

Katie Ireland said...

Just keep breathing is right! I am glad that Trevor is having some good days with the Topomax.

You amaze me with ALL of the people you touch through the whole IS world. You have shared so much with me and what you have learned. That little man of yours is blessed to have you...


Anonymous said...

Love and hugs! Mom

Colby said...

You have me thinking...(As you always do!)...I guess I am going to have to write about what I know (or DON'T know) about acceptance on Colby's blog...When I read all of you newbies' posts, I feel like I am reading our own lives' stories!!!

I want to shout out "This was (or still is) ME!!! YOU are NORMAL! Which means I am NORMAL!!!" (Yay me!)

All of you precious parents are doing, behaving, reacting JUST LIKE YOU ARE SUPPOSED TO!!! (I have to keep capitalizing for effect...SORRY!)

Trevor is making wonderful progress...NOT at OUR pace, maybe, but it is HIS pace and is right for HIM....And he WILL keep going!!

Love you!!


Melanie said...

Oh I laughed and cried and happy danced along with you. I so love it when there is someone else out there who feels the exact same way I do.

All I can say is, do those happy dances at each and every little thing, and enjoy Trevor. He is on his own schedule. (I know I say that but I also do what you do and compare.)He will do his stuff on Trevor time, and no one elses!!! :)

Anonymous said...

You are REALLY good, Baby Trevor's Mommy. For whatever time acceptance embraces you, I am grateful.

I cannot help but be my practical self. That is, I probably do the same when I am not in acceptance. I try to problem solve and move-on.

Are these words hollow?
"Living with the emotions related to non-acceptance is equal to be emotionally disabled yourself. Your ability to care for your different child is impaired while you are angry, in denial, or bargaining for a cure from the medical maze or God."

They are from a post I wrote a while back.

The meeting place I would choose for 'giving-up' (aka doing nothing) and acceptance (could also be called doing nothing) is being open to what comes, responsive to what is offered, and not needing to know the future.

I also prefer action over fighting.

And I hope you find some meaning in UP. Take some tissues. Hugs, Barbara

Shanna Grimes said...

Agreed, it is a tough balance sometimes. Having hope, but also accepting the reality of the situation. I try my best to take it in stride, but there are those days. Those days when Javi is flapping his brains out or having a megameltdown. Kaylee not being able to tell me at almost two years old that she wants milk.

I think, I, for the most part try to just keep moving. Set attainable goals, move at their pace and just love them to pieces. The "when" has become irrelavant. When will Kay talk? When will Javi be fully potty trained? I know we'll get there someday, and so will lil' T-MAN ;)