6 days and Counting...

Who woulda thunk it? Who ever thought that this journey for an ear would have a happy ending? I guess I probably shouldn't consider it a done deal yet...we still have 6 days for the journey to come to a screeching halt. But truly folks, we've never been this close. No surgeries, no skin grafts, no infections, no hospitalizations, no antibiotics, no pain, no anesthesia. Just six days to count down to an ear. Make that, two ears.

And what am I feeling? I'm excited. I'm nervous. I'm overwhelmed. I'm scared. I'm happy. I'm relieved. I'm stressed. I'm sick to my stomach. I'm full of smiles. And I'm hoping that Kennedy is having so much fun at camp this week that she's too busy to feel any of this.

I have to admit that this has hit me harder than I ever imagined it would. When Kennedy first tried the ear mold on a few weeks ago, she cried. I held it together, I got her through the rest of the appointment, I dropped her off at school. Then I lost it. I sat on my porch and I cried all the live-long afternoon. I wish I could explain. I wish I had words. But even weeks later, I don't. I just don't.

Being Kennedy's mom has never been easy (but don't get me wrong, I wouldn't trade it for anything). It has been a journey that has forced me to a be a stronger person, a mean advocate, a better mom (well, I guess to be fair we should probably ask for validation of this from kgg and Katie but for now, I'll go with it). But nothing has been as hard as this journey for an ear. I've said it before and I'll say it again, the life-and-death stuff that we faced in the first half of her life...that sucked beyond words. But those choices were easy. I mean, duh...I'm going to do what my child needs to live.

But this elective stuff? This quality of life stuff? This stuff that could come back to haunt me? This stuff that I constantly second-guess my decisions about? This fine line of you are perfect as you are but let's change you? Let's face it...sometimes it makes me cry. Sometimes it makes me want to punch something. Sometimes it makes me scream "why me? why her?" Sometimes it makes me full of hate that these decisions even need to be made. Sometimes it makes me lose my shit. Then I take one look at that sweet blond, blue-eyed girl, and I carry on. I fight this fight, I make these decisions, I continue on this journey for her and her alone.

And Lord knows that this journey has consumed us. In the last three years, I have lost track of the number of doctor appointments, the pre-ops, the tests, the surgeries, the days spent in the hospital, the number of infections, the number of gifts, of calls/texts/visits trying to cheer her up. And, I have lost track of the number of tears. Not because they don't matter or because they are in the past, but because they matter too much. Disappointment has met us around every corner. Every. Freakin'. Corner. Fortunately, it only has 6 days to figure out which corner we're coming around next...maybe we'll win this game after all!

This last time of trying on the ear, there were no tears. She looked in the mirror and gave her approval. She smirked when her big sister told her it looked good. She even let her take a picture and send it to Daddy. Maybe, just maybe, she's allowing herself a victory. Maybe, just maybe, she is realizing that she will soon have two ears. Finally.

We're about to face a lot of firsts - the first time she wears it in public, the first time she wears it swimming, the first time she wears it to a sleepover, the first picture we take of her wearing it, the first time someone asks something about it, the first time showing up at school with it, the first time she completely forgets that she has a prosthetic ear on. I have no wild thoughts that she will put it on Tuesday and be 100% fine and dandy with this ear. It is a MAJOR life-changing event for her. It will change life for her as she knows it. It will change what she looks like. It may change her confidence level. It will be an adjustment.

But in the long run, it will just be Kennedy. With two ears. Beautiful, as always.

Words of Wisdom

We have been on this journey for an ear for a long time. We've hit many roadblocks, we've had may disappointments, we've cried many tears. Even so, I have an idea that our toughest moments are yet to come. Although Kennedy chose this current path and is very excited to receive her ear in a few weeks, she is eleven. She's entering a new stage of life and emotions are at the surface. She's never had a right ear. This ear will change what she looks like. She has to be a huge part of the creation process and talking to doctors is not her strong suit. She's going to have to show up at school one day with two ears, exciting but anxiety-provoking in a child who doesn't like attention. I recently asked Team Kennedy to share what pulls them through when the waters aren't smooth sailing. The response was awesome, too awesome to share with only Kennedy. In hopes that something here might help you someday...



My dearest Kennedy - There is no promise that life will be easy. Some people may have a harder road than others. And frankly sometimes, for all of us, life just plain sucks. But when life gets you down, when you get overwhelmed, when you just need some reassurance, or just because...some words and ideas from your friends, your family, and Team Kennedy to bring you peace.

Some people turn to something that brings them comfort:

- Ice cream.

- Chocolate fixes a lot of heartaches.

- My pj's, a blankie, and a book to get lost in.

- I play my favorite song, kind of like an anthem.

- I turn up the music as loud as it will go and just let it take over.
- Mindless TV.
- Birthday cake...makes you happy every time.
- Guardian angels.
- My wiener dog! (yes, you know who this came from)

Some people turn to God and the Bible:

- Pray. Just pray.
- Remember when waves are crashing over your head, they're under His feet.
- I can do all things through Christ who strengthens me.
- God doesn't bring you to it if he can't bring you through it.
- So let us pursue the things of peace, and the the things for building up one another.
- In this world you will have trouble; but be of good cheer, I have overcome the world.
- ...tribulation produces perseverance; and perseverance, character; and character, hope. Now hope does not disappoint, because the love of God has been poured out in our hearts by the Holy Spirit who has given to us.
- When the Lord closes one door, somewhere He opens a window.

Some people have their favorite quote (their own or well-known):
- "Sometimes crying or laughing are the only options left, and laughing feels better right now."
- "Everything will seem better after a good night's sleep."
- "Just breathe."
- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain."
- "It's sink or swim, those are my only two options."
- "Just keep swimming, just keep swimming."
- "This too shall pass."
- "You can't have a rainbow without a little rain."
- "I'll think about that tomorrow. After all, tomorrow is another day."
- "Only in darkness can you see stars."
- "It takes rough seas to make a good sailor."
- "What doesn't kill you only makes you stronger."
- "Being strong is something to be proud of."
- "For she was beautiful her beauty made the bright world dim, and everything beside seemed like the fleeting image of a shade."
- "I love you, all the numbers in the world."
- "Courage does not always roar. Sometimes courage is the quiet voice that says at the end of the day, 'I will try again tomorrow.'"
- "Courage is being scared to death and saddling up anyway."
- "Tough times never last, but tough people do."
- "Hard times don't create heroes. It is during hard times when the 'hero' within us is revealed."
- "Keep your face always toward the sunshine, and shadows will fall behind you."
- "Celebrate we will, because life is short but sweet for certain."
- "Celebrate the little things along the way because those are the things that are gonna get you through the hard days."
- "We cannot control the waves but we can learn to surf."
- "Promise me you'll always remember that you are braver than you believe, stronger than you seem, and smarter that you think."
- "Keep smiling!"
- "Try to be like the turtle, at ease in your own shell."
- "Find a place inside where there is joy, and the joy will burn out the pain."
- "Hope is a walking dream."
- "Your present circumstance don't determine where you can go, they merely determine where you start."
- "I can't change the direction of the wind, but I can adjust my sails to always reach my destination."
- "Out of suffering have emerged the strongest souls; the most massive characters are seared with scars."
- "Scars don't dictate where you are going, only where you have been."

And one day I found this on my kitchen table, written by a very wise little soul, only nine years old. 
I keep it handy so I can always pull it out. Your Papa asked for a copy to frame. I've had Team Kennedy members tell me that it has helped them more than once.

Life is a gift
A gift of hope
A gift of happiness
And no matter how
hard or miserable
life is
It can always be worse.

Whatever helps you, hold it close during the toughest of times. You are braver than anyone I've ever met. You are stronger than anyone I've ever known. You are loved more than you will ever know.

Love,
M

Happy Birthday Kennedy!

Kennedy turns 11 next week. And more than ever, I'm seeing signs of her growing up. She's always been mature (thanks to her life experiences), but she's definitely growing up and growing into a very caring young lady. Last weekend, I saw her be an awesome "big sister" to a friend's little boy. She took him under her wing and took care of him instead of being annoyed by little boy antics. This past weekend she made the announcement that she wants to take a Christmas trip instead of Santa visiting this year. The fact that she is picking making memories with her family over asking for material things warms my heart. Today when she noticed that our dog was injured, she dropped everything, squeezed in beside her, and spent the next thirty minutes petting her and talking to her in a soothing voice. In the last few weeks she has started following several kids, via my Facebook, with illnesses or injuries. And she doesn't just read about them and move on...she talks about them, she thinks about them, she revisits their pages regularly, she truly cares about their journey.

Seems like every birthday, we're looking forward to something in the coming year. When she turned two, we looked forward to her growing (kids with her syndrome often have trouble growing in the first year which can lead to more health issues). When she turned three, we looked forward to expanding speech therapy services to give her the powerful tool of speech. When she turned five, we looked forward to saving her life with a titanium rib (okay, maybe not looked forward to it but you get my point). When she turned eight, we looked forward to her going live with her BAHA and hearing natural sound for the first time in her life. We also looked forward to her getting an ear. When she turned nine, we looked forward to her getting an ear (again). When she turned ten, we looked forward to her getting an ear (again, this time a prosthetic ear).

Kennedy is scheduled to receive her new ear on June 20th. So it might seem natural that that's what I'm looking forward to for Kennedy in year 11. But that's not it. Don't get me wrong, that's exciting. And a long-time coming. We're all excited, scared, nervous, proud, eager, and on and on.

But when she turns eleven, I look forward to a year with NO surgeries. I look forward to a year with NO procedures. I look forward to a year with NO major medical decisions. I look forward to a year with few and far between doctor appointments. This year will be like no others.

I look forward to her "graduating" fifth grade, saying goodbye to her elementary school era. I look forward to her embarking on the journey known as middle school. I look forward to her choosing to be who she wants to be. I look forward to her making new friends and to her best friends, becoming a better friend   which only comes with age. I look forward to watching her continue to grow as a person. I look forward to seeing how big her heart is.

I look forward to her being able to just be...

Decisions

So I was scrolling through the Team Kennedy page, updating some information, when I ran across this "note" that I had posted (before I started writing this blog). It was written August 16, 2011...right after finding out that Kennedy needed a second skin graft after the second try at ear reconstruction. A few days after that second skin graft, a MRSA infection landed her in the hospital for 10 days and only ended because her new ear was removed, taking with it our last hope for reconstruction. 

Decisions. Some are easy, some are just damn difficult. But they must be made. I’ve made my fair share of major, life-altering, difficult decisions in my lifetime. Some have been right, some have been wrong. No matter what, the simple act of making the decision usually brings peace…the decision has been made and so be it. But that isn’t always the case.

In my 35 years, the most difficult decision that I’ve ever had to make is to decide what my child’s face should look like. Why should a mother ever have to decide such a thing? Let me answer that…NO MOTHER SHOULD EVER HAVE TO DECIDE SUCH A THING. For eight years, I agonized over the decision. For eight years I found new doctors to consult, conducted hours of research, explored all of our options. For eight years I weighed the pros and cons of “doing something” vs. “doing nothing.” For eight years, I struggled with the balance of letting my child know she is perfect how she is yet talking about options to make her change what she looks like. Then I made a decision.

I found an awesome doctor (truly awesome…I wonder where we would be in all of this right now without him). I decided that “doing something” before Kennedy enters middle school would be best for her self-esteem. We came up with a plan. Then I fretted. And worried. And dreaded implementing that plan.

Then last October, that decision became reality. After Stage 1 of ear reconstruction, her new ear looked awesome. I finally felt vindicated in the decision that I made. After eight years of thinking through the options, I knew we had done the right thing for Kennedy. I was at peace.

Almost three weeks later, that decision came crashing down in a million pieces. A fast-moving infection swept through and ate all of the grafted rib cartilage and a hole through the ear (which fortunately, ended up saving her life by giving the infection an external drain site). Sitting in that doctor’s office at Duke, one of the world’s leading hospitals, I hit rock bottom. No one will ever understand how I felt that day. The decision that I had made was now just a mistake. Who was I to think that I should be deciding how my child’s face should look?

Then on the way home, I heard these words from the backseat, through sobs, “Mommy, remember what Dr. Marcus said. We can fix this. It isn’t the end. I can do this again. It wasn’t that bad of a surgery.” Who was I to hold the trust of this amazing little girl? Who was I to make this little girl be my comfort? My job was to comfort her, not the other way around.

On a Sunday afternoon, Dr. Marcus called to check on us, to reassure me that it wasn’t the end, to let me know that this affected him too. That one phone call, from a busy plastic surgeon, on a Sunday afternoon, is one that I will always cherish. And because of this amazing child, and because of this awesome doctor, I made the decision again…if at first you don’t succeed, try, try again.

Which brought us back to the operating room a couple of weeks ago. Stage 1 plus Stage 2 ear reconstruction. All precautions taken, all systems go. Her surgeon was positive after the surgery…but a mother’s intuition can go a long way. I had a bad vibe, although kept it to myself in hopes that I was wrong. So when a week later we get the news that part of the skin graft wasn’t taking, I wasn’t surprised. Disappointed, yes. But not surprised. And now, I again question the decision. As we wait. And wait. And hope for a happy ending to this journey. This is our last shot at this type of reconstruction. If not a happy ending, I don’t know where we go from here. I don’t know how I find the strength to make another decision.

Someone recently made a comment to me that if it doesn’t work out, at least it is only cosmetic surgery. And I’m sure there are others that don’t understand what the big deal is. But we’re not talking cosmetic surgery here. We’re talking about confidence, self-esteem, stopping the whispers and stares and laughs and harsh words. We’re talking about quality of life and happiness. We’re talking about a little girl who just wants to look like and be treated the same as other little girls.

Unfortunately, this isn’t the end of the difficult decisions. Up next is her cheek/smile and then her jaw, with a spinal fusion thrown in somewhere too.  In some ways, I look forward to the day when Kennedy can make her own decisions about such things. In other ways, I don't want her to ever have to make such difficult decisions. Someday, I hope she can appreciate the decisions that have been made for her. But no matter how any of this turns out, her sweet little face is a face that I will love and cherish forever.

I don't even remember writing this but looking back, a few things strike me: 

1. I should have trusted my intuition and skipped the whole second reconstruction. Okay, I don't mean that...it should have worked and would have been great. But it makes me realize even more that trusting my instinct is usually a smart move.

2. Just when you think things can't get any worse, they can. 

3. A turning point was reached shortly after this was written. After all that Kennedy went through, I couldn't make any other decisions regarding her ear. Although I think it was the right decision to make, the prosthetic process path that we're currently on was Kennedy's sole decision, her own choice. And forever and always, I support her 100%. 

4. This little girl is more amazing to me everyday in her strength. She is truly my hero.

Sister-ship

I've written about surgeries, appointments, and hitting bottom. I've written about who Kennedy is, how much my support system means to me, and what I'm afraid of the most for Kennedy. Today, I'm writing about big sisters (which may seem odd since I don't have one nor am I one). More importantly, I'm writing about Katie. I've shared bits and pieces about Katie, but I haven't shared who she is on this journey. And frankly, she's a pretty important piece of our puzzle not to share. 

I came home from answering phones for the Duke Children's Radiothon the other day to a text from Katie, telling me she had donated money in honor of Kennedy. Her own money. She donated last year too but that was a little different - Kennedy was trying to raise a certain amount and honestly who weren't we begging from then? This year she is a poor college student, hours from home and the radiothon. I mean, we know that like most college kids she would rather spend her money on tutors and study guides and laundry and Friday night pizzas while she stays in and studies (right? that's what college kids spend their own money on, right?). So that she would make the effort this year to donate, to donate her own money, and do it in honor of her little sister? It made my eyes overflow and my heart swell with pride and love.

But should this surprise me? No, because this is who Katie is. From the time she cried tears of joy upon hearing that she was going to be a big sister, Katie has truly been a part of this journey. And mature beyond her years, she has taught us many a thing throughout this journey. She was the one who taught me through a story she wrote and shared with her second grade class, that her sister was born with an ear "that looks like a flower, and that's okay." She's the one that taught me that it is okay to pick on Kennedy, that she needs it to build her self-confidence and it teaches her how to stick up for herself. She's the one who continues to try to teach me YOLO!, that you only live once (of course now that I think about it, this usually has to do with something that costs ME a lot of money in the end). She's the one who taught me that as the big sister, she is the best one to pull out the smiles and laughter when Kennedy turns inward and tries to shut the world out.  

But being Kennedy's big sister hasn't always been easy. She has been put on the back burner while we deal with medical issues. She has had to enjoy vacation excursions without her mom because I was at the hospital with Kennedy. She went a whole month with seeing me only in a hospital setting, and usually crying. She's had to leave a sick and unstable Kennedy a number of times because she wasn't allowed to stay in the hospital with her, not knowing if she'd see her again. She's had to sit through school knowing Kennedy is in surgery and also knowing that surgery can go bad in a matter of seconds for Kennedy. She has had to face some pretty special moments (like being honored on the homecoming court) without me there to cheer her on because I was in a surgical waiting room. She's had to sit back at times and watch Kennedy get presents and attention and extra love. She's had to endure Kennedy's jealousy of her non-medical filled life which only gets worse the older Kennedy gets. I could go on and on. But do you know how she handles these situations? With grace. Because this is who Katie is.

Although I don't have a sister myself, I know plenty of people who do. Some get along, some are estranged. Some fight constantly, some would give their life for the other. Sister-ship is a complicated thing, for sure. Goodness knows that these two have their own moments. But being a big sister on this journey has helped Katie become a good sister, a good friend, a good person. That's one of the positives of this journey...seeing how it has positively shaped this beautiful young woman. 

With all that we've been through, with all that she has seen and been witness too, Katie has decided to follow the dream of a nursing career. And although she is leaning in a different way, I know in my heart that she will end up on a pediatric floor somewhere. Because if you can make Kennedy laugh on the darkest of a hospital day, then you have a calling. No matter what she chooses, both patients and their families alike will be lucky to have her in their life, even if only for a short time. 

As Katie continues to soar through life, my worries about Kennedy making her way through this journey in the future lessen. Because I know that if ever I can't be the one to stand up for her, or pull her up and keep her going, she has a big sister right behind me waiting to pitch in. Because this is who Katie is. 

And whether Katie believes it or not (age 10 brings out the sisterly attitude full-force), Kennedy loves her big sister more than words can say. As do I. 

The End is in Sight...

I recently ended a Team Kennedy page update with the words "the end is in sight." And ever since, those words have been weighing heavily on my mind. In some ways, I truly believe that. I truly believe that we're coming to the end of a very emotional, devastating at times, exciting path in our journey. In other ways, I know that we have paths still to navigate on this journey, and other paths that we will discover in the future. So is the end really in sight? And what end am I really looking forward to?

When you're handed a baby in L&D recovery, you are overwhelmed with love and pride. When you're handed a baby with a medical diagnosis, you are also overwhelmed with caution, fear, uncertainty, and sadness. But within an hour of that medical diagnosis, I was also promised an ending, one that ended with an ear. A promise that the most visible reminder of this somewhat-complex medical diagnosis could be fixed, could be perfected. And honestly, I've held on to that promise for ten years.

One might wonder what the big deal is about an ear? Why make your kid suffer just for an ear? Are you really that vain? Some people live their whole lives without a body part of some sort. Some people have it a lot worse than your child.

But here's the deal. For ten years, I've had to watch my baby girl endure laughs, stares, whispers, rude comments, people pointing in her face, everyone who goes by giving a second glance, pointed questions, and assumptions that she also has cognitive challenges. Ten years. Think about what that would do to your self-confidence level. Think about what that would do to your soul. And you're an adult. Now think about what that could do to a child. A shy, quiet child. When I talk about an end in sight? This is what I want to end. Because after ten years of watching it, it just gets to be too much.

Don't get me wrong, Kennedy handles all of this and her self-confidence is building every day. But her defense mechanism is to ignore it all. I'm the one reminding children and adults alike that it isn't nice to stare or whisper about people standing next to you. I'm the one worrying in new situations about what's she going to face. I'm the one answering the questions. I'm the one worrying about her because even though she "ignores" it all, I know she realizes it all, sees it all, and internalizes it all. And even though I know that dealing with this on a daily basis has led to how strong of a person she is, she shouldn't have to be that strong, dammit.

So yes, I'm looking forward to this whole process being over. Our first ear reconstruction ended with a severe infection that ate all of the implanted cartilage. I literally hit rock-bottom after that one. Our second attempt at ear reconstruction ended with MRSA and removal of what would have been a very cute ear. Those close to me know how devastating that was to all of us and the guilt that I still carry because of it. And now with our third attempt at an ear, a prosthetic ear, we are well on our way to ending this quest.

And I'm looking forward to reaching the point where she can just be Kennedy, with or without the ear as she chooses. She will have the option and that gives both her and I peace of mind. And I'm looking forward to ending this whole balance game of convincing her that's she is beautiful just as she is and she will be beautiful with an ear too. And I'm looking forward to not having to defend my decision anymore of moving forward with this, causing all of this medical drama in her life.

But what I'm really looking forward to is the end of the stares, the laughs, the whispers, the assumptions. I'm looking forward to not seeing the anxiety or sadness in her eyes as she "ignores" the children and idiots (i.e., adults who do this) around her. I'm looking forward to seeing if she decides life is better with or without an ear. I'm looking forward to watching her have a tool to become more comfortable with herself in social situations. I'm looking forward to the end.

So even though we have many paths yet to go, and some that we probably even haven't discovered yet, the end of THIS path is in sight...

Life's A Dance

On a recent road trip, John Michael Montgomery's Life's A Dance came on. I've heard this song hundreds of times (can't take the country out of the girl), but it wasn't till then that the words slammed into my heart. And really gave me some much-needed clarity about this journey we are on. Because as with any journey, when you're in a holding pattern you start second-guessing. You start worrying. You start wondering if you made the right decision. 

Life's a dance you learn as you go
Sometimes you lead, sometimes you follow

I've always been the leader on this journey. Kennedy is just a child, afterall. And Ryan, well he's Ryan (a great dad, don't get me wrong; but major decisions are not his strong suit). For almost ten years I've only led this journey, second-guessing every step we take. But after last year's disastrous ear reconstruction, I started to take more of a backseat and put more of the decision-making on Kennedy. Moving forward with the prosthetic process was her sole decision. I'm simply a follower at this point. But following doesn't come easy for me...it comes with just as much guilt as leading. Am I right in letting her decide? Am I putting too much on her shoulders? She is still just a child. But, life's a dance you learn as you go...

Don't worry about what you don't know
Life's a dance you learn as you go

Don't worry about what you don't know? Is that even possible? The don't knows scare me the most. Just when I stop forgetting all the don't knows regarding this child, one comes barreling at us full speed ahead. However, we can't control life. We can't predict the future. We don't know what fate has in store for us. So at some point, we all just have to stop worrying about what we don't know and move on with what we do know. If it is meant to be known, then eventually we will know it. And will deal with it then. Because life's a dance you learn as you go...

The longer I live the more I believe
You do have to give if you wanna receive

I'm a firm believer in the adage that you have to give in order to receive. And more than anything on this journey, I give my faith to our angels in white coats (well, okay they usually have scrubs on when I'm giving them most of my faith) in hopes of receiving what I've always promised my baby girl -- a healthy, normal-as-possible life. It isn't always easy giving them my baby girl. It isn't always easy letting them have the reigns. It isn't always easy knowing how to give them my faith. But life's a dance you learn as you go...

There's a time to listen, a time to talk
And you might have to crawl even after you walk

Knowing when to listen and knowing when to talk isn't always easy. Especially when Kennedy keeps things so bottled up inside. But I'm learning. And when I start to question whether she needs a professional to help her through this journey, I remember that I am her best advocate. I know her better than anyone else on earth. And I know that even though she's had to crawl after she walks numerous times, she's still a happy kid. This will come back to bite me in twenty years when she send me her therapy bill. But life's a dance you learn as you go...

Had sure things blow up in my face
Seen the long-shot win the race

Could this stanza ring any more true? We've had our share of sure things blow up in our faces. We all know that this journey hasn't been easy, in many different ways. But luckily, we've won races and battles that we never thought we would win. Learning to say the "s" sound. Hearing rain drops for the first time. Raising her arm/shoulder above her head. Holding her head up straight. I could go on forever here. I know we'll continue to see things blow up in our face as this journey continues...but we'll be able to conquer and win the race. Because life's a dance you learn as you go...

Been knocked down by the slamming door
Picked myself up and came back for more

Yep, we've been knocked down. Stepped on. Kicked while down. Run over by a truck. Backed over by that same truck. But here's the thing...KENNEDY picks herself up and continues on. And we have no choice but to follow her. I only find my strength to come back for more through her. How she does it, I will never know. She is keeping her secrets on this close to the vest. But life's a dance you learn as you go...

But I learned something from my blue eyed girl
Sink or swim you gotta give it a whirl

No matter what we face on this journey, I consider myself to be damn lucky. Lucky to have this soul in my life. Lucky that I get to be her mom. Life with her truly is a dance that we are learning as we go. So are we doing the right thing? Am I right in letting her make the decisions? Is it fair all she has to go through to look like her peers? Well, I'm not sure...but sink or swim,we gotta give it a whirl.