Friday, November 26, 2010

Lead Balloon

I've been collecting Willow Tree angels since I was 15. Back before they were sold in Hallmark and every other store imaginable, this little florist by me sold them. It was one of the few places where you could find them, and I just fell in love. I haven't gotten any new ones in the last year or so, due to budget and Shane never remembering which ones I need, but this little boy with the Hope balloon is one of my favorites. I bought him for myself ages ago and I bought him for Sara Joy on sweet Joel's first birthday.
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I love him and his hope balloon, but lately, my balloon has felt a little deflated. Like the helium has all gone out and instead of holding it aloft, I'm just dragging it after me.

I'm trying. I'm really, really trying, but there are so many heartaches with work and I wish I could talk about them, but you know I can't, life, love, everything. The dumbest things hit me and hit me hard, like realizing that for the rest of Tommy's life with me, I'm going to have to write epilepsy on his medical forms. When he starts school, his teachers will get medical info from the nurse stating that he has epilepsy. I drag that little hope balloon behind me with wishes and prayers that he will outgrow them, but how it was burst and drug down a little further when he had another seizure Monday night. As I type this, he's sitting on the floor with shoes on his hands clapping them together and how can I feel anything but hope when he's so healthy, so normal all the time, but. When people ask how he's doing, I never know how to answer, shuffling my feet and words, because of course he's fine when they ask. Of course he's a normal, healthy one year old, but. The seizures and the images I can't get out of my mind, his blue lips, twisted in a silent scream. I hate it. I know that blue lips are normal for his seizures. I know that they don't mean that he isn't breathing, but my heart shuddered on Monday while his little body shook in my arms and thought, nononono, this is wrong, so wrong.

Someone once told me that you can't rank pain. If you're having a bad day, a really bad day, you can't allow yourself to brush it off and say, Oh well, at least I still have a house/job/family, unlike some people. And while you should of course remember to count your blessings, you can't brush off your pain because someone else's pain is worse. I've caught myself doing that, thinking that I have NO RIGHT to be sad or upset at everything, because it could be so much worse. I know this. I do. But in the here and now of my days, I roll the word epilepsy across my brain a million times a day and it makes my heart hurt because of all the I don't knows. Will he outgrow his seizures? Or will he learn someday to tell when he's going to have a seizure? My brain misfires, too, with migraines and sleep paralysis, are his misfires related? Is it my fault? Will he have another seizure tomorrow? Next week? Next month? Never?

When will my heart heal?

24 comments:

Sara Joy said...

I love you.

InTheFastLane said...

I don't think mom hearts ever really heal. I think we carry around those days forever. We just kind of patch it up and move on, or try to. But those things will never leave us, they change us and become a part of our ever evolving selves. I don't think it is healing as much as we eventually get to a place of acceptance.

Kate at Big City Belly said...

I'm going to give you a big hug next time I see you, which I hope is very soon.

I think you should LET yourself feel the pain and sorrow for as long as you want, then let it go. "Let it come, let it go," is what my favorite yoga teacher always says. xoxoKate

Megan said...

First of all, so much love. Second of all, if you are sad, angry, in pain-- feel it. Don't dismiss it. Don't ever do that to yourself. Yes, someone else may have a different path than you. It doesn't take away the pain of your path that you are on. And sometimes, if it feels like you are running out of hope, that's okay too. Feel that moment. You have to do that.

Love you and am here for you always.

Adventures In Babywearing said...

The heart heals in its own way... but it never forgets. Scars are funny that way.

You know I'm allowed to say this: it gets better.

And after all we went thru with Noah & the holiday anniversary, the year after Noah's seizures started, on Thanksgiving Jeff and my mom surprised me with the entire Willow Tree nativity set from Carson's.

Love you, our souls are bonded in a rare way now, you know.

Steph

Adventures In Babywearing said...

PS I like Kate's comment.

S.

Sara said...

You have been on my mind so much the last few weeks. I wish there were something I could say that would make you feel better. :( I wish there were a way for me to lift the burden off your shoulders for even a few moments. Sending you virtual hugs.

Bacardi Mama said...

I think Kate is right. You just have to let yourself feel for as long as you need to and then let it go. This isn't something you did or have any control over. I pray every day for you and Tommy and that he will grow out of the seizures or never have another. he is so lucky to have as his mommy. I'm sorry that this is your new normal, but I have great faith that you can adjust and learn to go on from here. You're the best Erin! Don't let yourself think you're not. XOXO

Bacardi Mama said...

p.s. I collect Willow Tree angels too.

Becky said...

I had a Willow Tree Mom and son. And then a cleaning lady came to my house, dropped it and our heads fall off.
Ben screamed, I was sad and the cleaning lady fired.
So it could be worse.

KIDDING! Love you and am thinking of you and Tommy.

anymommy said...

Grief isn't relative, it's just yours. Grieving loss is what we do, we grieve it and rage against it and kick and scream. You've lost a lot, peace of mind, lack of fear, so many other emotional and physical changes. My heart hurts as I read about you finding your way through it all and I have no doubt it is a grieving process that will take much time. It doesn't mean your gorgeous heart isn't grateful for all you have.

Kaycee said...

Thinking of you.

Jen said...

Oh Erin! Give yourself permission to feel what you feel right now. It may come and go and that is okay.

My heartache over my lost babies has been like that in waves. While very different kinds of heartache...it is much the same in how the scar can be ripped open and we are back feeling it.

This heartache has changed you...how you live, love and breath.

I have willow tree angels too...When I lost my 2 yo's twin a friend gave me the statue of Angel of Mine and my daughter Abigail Eden that we lost this spring, her ashes are in a willow tree keepsake box of the same name.

Bless you on this journey. I pray for you and your family often.

pinkflipflops said...

(((((()))))) I love willow tree angels as well and I think I need that hope balloon boy!

Heather said...

i am so sorry you have this heartache in your life. and what you wrote about having and embracing your own pain, is so true and well-written.

ugh, life. that is all i can say. and the longer you live the more you realize no one gets by unscathed.

but i am so sorry you have this heartache.

Lindsay said...

I know what it's like to carry that lead balloon. I know what it's like to wake up and wonder, "Will this be the day he has his next seizure?" We're approaching the date of Burke's first seizure one year ago, and I find myself getting really anxious, even though we haven't seen a hint of abnormal neurological activity for more than six months.

I'm so sorry you're experiencing this. I will honestly be praying that you are able to learn the new normal quickly and that, as you do, the lead will be replaced with helium. This way, one day soon, your balloon will fly high and carry your dreams for Tommy with it. :)

Jacki said...

Love Kate's comment and admire your bravery.

xoxo

Cameron said...

I, too, love Kate's comment. And I love you and am praying for you and Tommy and his doctors. xoxo

ZDub said...

Love you. This is so hard.

Just hang onto that balloon, no matter how hard it is.

Sharon - Mom Generations said...

I have no words other than the loving words already here. Let time and love and love and time heal your heart as your beautiful child shows you the way... xo

Momma Good said...

I was at my MIL's house last night for dinner and saw that she had the same little hope balloon boy you and SaraJoy have. Seeing it made me think of you and your Tommy. I hope today the sun is shining for you (in more ways than one).

Nichole said...

Erin, you have the right to feel however you feel, whether it be happy or sad or frightened. Count your blessings, yes, but it doesn't mean your pain is meaningless. You are allowed.

Thinking of you. Maybe we can get together one day and do something. Cook dinner for your family?

Life with Kaishon said...

I am so sorry you are hurting Erin. I am going to pray your lead balloon starts floating again soon. XO

Ceci said...

OK, you don't know me at all, and I'm not sure how I got to your blog, but my daughter, who is now 5, was diagnosed with epilepsy when she was 15 months. I know what you're going through. She's been seizure free for about a year a half now, and I'm feeling hopeful. We'll see. Hang in there. The epilepsy monster sure does suck.