Sunday, June 9, 2013

Denial - Not Just a River in Egypt

Over the last 9 years several people have told me that I'm "in denial" about various things. When Kennedy was born and we found out she had Down syndrome, after an initial grieving period, I jumped in with both feet into the world of "Down Syndrome Awareness". I chose to look at the glass half full... sometimes even overflowing. Skeptics told me I was "in denial."

"Oh sure, she's cute NOW," they would say, "but as she grows her delays will grow too and she will be a burden." So far, not a burden. I guess I'm still living in denial.

As she faced surgery after surgery with complications, I asked for prayers as we went through each one and saw the looks and heard the whispers... "This is serious. She's in denial."

When she was diagnosed with Leukemia our world shattered. But I climbed out of that pit and looked into the future as poison dripped into my baby's veins... one year, two years, five years down the road when she would be cancer free. As we went to funeral after funeral for her little friends, I heard people whisper, "What makes her so special? She's living in denial." And perhaps I was.

A year later as we faced Kennedy's 9 hour spine fusion surgery, people once again thought I was living in denial. They thought I was oblivious to the risks, never knowing that in the back of my mind I was planning her funeral, just in case. Not many people knew that I had a tear-filled conversation with Kassidy's soccer coach, who also happened to own a funeral home, so I would be prepared, should the worst happen. Because just maybe, I wasn't living in denial after all. But no one wants to hear those details.

The next people to tell me I was in denial was a school system who told me that my child wasn't like other children (duh). That I was an over-involved parent in my child's education and that I should just lock her into the "special education box". When I argued back that my child WAS capable of so much more than they were giving her credit for, and that special education is a service and not a place, I was told, very emphatically by a rude lawyer that I was in denial. And so we bucked the system and moved to a place where they believe in my girl as much as I do. (Thankfully here, no one is telling me I'm in denial now except for maybe a few blog readers and a couple skeptics from an old school system.)

A few weeks ago, we went to an ENT appointment for Kennedy. She's seen the ENT literally hundreds of times over her life. It's one of the routine appointments for kids with Down syndrome that became even more routine after she had leukemia because, you see, when your child survives cancer, you get to think about the long term side effects from that poison that dripped into their veins to save their life. Kennedy's first side effect - hearing loss. We've battled it for years with multiple sets of ear tubes that keep falling out because her little body doesn't like having foreign objects in it.

And now it's time. On Thursday, Kennedy will be fitted for a hearing aide in her right ear. Her ENT and audiologist talked to me about it at length at her last appointment. They told me why she needed it (because of the chemotherapy), and they brushed it off like it was nothing and smiled and said they could make it any color she wanted - bright pink if she chose! (To which I balked and politely declined and asked for skin color, thank you very much.) I sat there and took in all the information they threw at me, accepted the paperwork for her surgery (they're replacing her tubes as well), and I smiled and said ok and walked out. I've only told a few necessary people because this time - at least for right now - I'm in denial.

It's such a silly thing in the grand scheme of life... a hearing aide. Lots of kids have them, a couple of Kennedy's friends have them in fact, and I'm sure in time it will no big deal at all. But it's one more thing. One more thing to think about and deal with... and while I'm sure she will rock that hearing aide and it will help improve her speech and it will just become part of our routine and be totally FINE... right now, this second, thinking about Thursday, I am in denial. And I hate it.

18 comments :

Tamar SB said...

I'm sending you a hug from Boston! I wear hearing aids (I went through a wear them in bright colors phase) - I was 10 and my favorite color changed by the day but my ears didn't grow that fast - yep...I was stuck with one green "ear" and one blue "ear for 2 years....smart choice mama going with skin color!

I am sure this will be one part of Kennedy - the Kennedy we all love b/c she is amazing!

FBF Rothkopf said...

Yeah, I think DENIAL really is just a river. 'Cause we know all about this stuff, and YET we continue, and our kids thrive and conquer.

K will totally ROCK the hearing aids. Like she does everything else. And you will mostly forget about them, except as another piece that can be lost or broken, another thing to keep track of (I have lost count of how often I have to ask Sofia "where are your glasses?" each day).

I think Denial is way better than Woe-Is-Me land. Denial lets us keep going. Woe-is-me land is a place to wallow. A place to freak out. A place to stop and not make any progress. Denial means always moving forward.

(I'm still in Denial. The hubs is still in Woe-is-me land. It's not going well right now. GRRRR.)

Hugs,

f.

mamabearbrooks said...

Sincess Kennedy will rock her new ears like everything else she does! Once she realizes how differently things sound from what she is used to, she will be asking for it! Just like with needing glasses to realize what you are missing that the rest of the world sees!
She is an amazing child- being raised by an amazing family!

Shari Funkhouser said...

Renee:

Honestly, I never thought that you were in denial. I saw a passionate mother who was being a strong advocate for her child.

The hearing aid will take some getting used to but just think about what she will hear that she may not now. It will be amazing.

Kennedy has been through a hell of a lot of stuff and I am confident that she will continue to progress and blossom.

KateK said...

She'll be fine! If she wants 2 rock pink hearing aids, let her!!

My godson who's about her age wears them and gets a kick out of getting ones with dinosaurs on them. They're sooo little (the kind that hang behind his ear with a clear tube-y thing) that unless you're staring at the back of his head you can't even see them. He puts them on without a fuss (its great to hear, even he thinks so lol), goes to the audiologist once a year and its sooooo not a big deal.

Heck, a little girl who has been his classmate since kindergarten has the same kind and he had no idea she wore them lol. She had no idea he got them til, like, a year later.

Lauren Shapiro said...

My dad recently got hearing aids (too many rock concerts in the 1970s!!) and he can answer his phone through them like a blue tooth. They are creating some incredible inventions these days!! :):)

Lynn said...

What do people think you're denying? You've had tons of things thrown at you and you've handing each and every one of them the best way you could being Kennedy's champion and cheer leader! You're doing an amazing job!
Praying right now!
Psalms 31:1-3 In thee, O LORD, do I put my trust; let me never be ashamed: deliver me in thy righteousness. Bow down thine ear to me; deliver me speedily: be thou my strong rock, for an house of defence to save me. For thou art my rock and my fortress; therefore for thy name's sake lead me, and guide me.
My email address

Warrior Mom said...

Renee, you can get them beautifully and tastefully hand painted with anything you like. Skin tone with just a hint of Sincess!

Anne B. said...

I don't think denial has to necessarily even be a BAD thing. I think it works well for self-preservation as we work through the hard realities. I was once told that I had a "Pollyanna" attitude toward my daughter's genetic disease which would surely take her life, but no one knew when. So I decided to live each day to the fullest and not worry about what was to come. We had 15 beautiful years and if I lived them in denial then it sure was a better place with all of the happy moments and memories than a place spent worrying and giving up! GOOD JOB MAMA RENEE! I say keep on swimmin' in that river!! ((((BIGGEST HUGS))))!!!

Emma Stormy said...

Renee,
I still don't see you in denial. I see you as super mom that simpy handles each and every 'thing' that life throws your way.....and I see you handling it with grace, peace and confidence. YOU, my friend, are amazing.......and if what we see in you is 'denial', we should all want it.

Love you!!!

Lynn said...

Know that I'm always praying!
Psalms 31:5, 7-8 Into thine hand I commit my spirit: thou hast redeemed me, O LORD God of truth (7-8) I will be glad and rejoice in thy mercy: for thou hast considered my trouble; thou hast known my soul in adversities; And hast not shut me up into the hand of the enemy: thou hast set my feet in a large room.
My email address

BridgetPirie said...

Renee, I totally understand about denial. I am in denial about Pete dying. I know his oncologists roll their eyes about me not giving up. They all think I am living in dream land or something.
These are our babies and we love them so much. I would be upset if Pete needed a hearing aide too. Our kids go through so much. Sometimes just one more thing is one thing too much.
I know that Kennedy will be great with the hearing aide when she gets used to it. But I undertand you not wanting it and grieving a bit about just one more negative thing.
Hugs to you all. You and your family are all amazing.

my family said...

hugs renee
sometimes denial for a bit can get us through the rough times until we are able to pick ourselves back up to get running

Cindy said...

I'm completely niave' when it comes to things about cancer, I had no idea hearing loss is a side effect! Oh my word! Praying for you, Kennedy and the family.

JB said...

I think the denial makes perfect sense in this case. Dealing with this is not going to directly affect her life span. But it is now one. more. thing. to deal with. One. more. doctor to add to the team. One. more. expense to wrangle. There is one. more. thing. to add to the list of worry and prayer. This may sound silly but embrace the denial for a little bit. You have earned it! You will deal with this, you will incorporate this into your life, but if you need some time before you begin that journey, take it.

Following Closely said...

Girl, My daughter has 2 plastic things in her eyes (contact lenses) to help her see (legally blind without them). Your baby girl will have 2 plastic things in her ears to help her hear. She is going to totally rock with class and style. You're an amazing mom and what you are calling denial is determination to help your daughter reach her greatest potential. Keep up the good work! Praying the surgery goes smoothly and that she adjusts easily to her hearing aids.

Mary Carrigan said...

Hi Friend!!! Think about you guys all time and decided to peek into your little world and see what all is going on. Guess I am right there in the Big River Denial with you :)..... if people had had to swim upstream in the rapids that we have had to swim in and fight our way throug ... they would never say a single word ... It is called coping ... and doing it pretty darn well if you ask me!! It is called fighting for what we know is right for our children!!would love to talk sometime!!! Have sweet, sweet memories of your sweet family ... love you all! praying for safety with all of these fires!!!!

Monicas Mom Musings said...

How could anyone say you're in denial? If that were true then you wouldn't be doing anything to help her and would be saying there's nothing wrong with her. Instead you have done nothing but fight for what she needs. That's not denial, that's advocacy and it's one of the things I admire most about you. Your ability to fight even when you're thrown the massive amounts of curveballs you have been thrown.