Friday, October 16, 2015

All I wanna be able to do when I grow up is buy Tide instead of Sun...

The guy on the phone says "So what's your long term goal?". I of course laugh - I try not to think about long term goals too much - there's so much that can happen - I respond "This is the best way I can put this, my long term goal is to be at the grocery store and be able to buy the Tide Laundry Detergent for $7.99 rather than the Sun Laundry Detergent for $1.99 - because Tide really does clean better". He laughs. I say "I don't have lofty goals - I just want to be able to take my kids to the movies once a month, eat a burger at Red Robin once a month, get the oil changed in my car when its supposed to be done - not when the odometer is 10,000 miles since the last change - I want to buy myself a new bra if I need it instead of wearing one until it frays and the underwire breaks". He doesn't say a word. There's a long pause. He knows all about her condition - we had that talk at the beginning of the conversation once I was finished telling him all the details of our financial situation. I laugh. "Ma'am, Danielle, Mrs. Edges, I don't know exactly what to say to you - you have nothing, you have no assets, other than a car which you need to get to work and school and to take care of your daughter, you already spend less than the average American household on everything - your family is in a very difficult situation, yet, (long pause) you laugh. I am honestly baffled. How do you laugh?" Of course I laughed. Partly to cover up the horrendous truth he spoke but also because this is life with a medically complex child. What else can I do? I've shed enough tears over her condition, over the financial ramifications of everything, of my own inability to seem to get along with others - it's enough to fill Crater Lake in Oregon  (I heard Crater Lake is super pretty - so I want to compare my tears to it). What else can you do? What after everything that has happened in the past 8 years has stayed with me (besides my Savior Jesus Christ)?

MY SENSE OF HUMOR. It's that simple.

I reply to this super sweet dude at the debt consolidation company "How do I laugh? Why do I laugh? It's all I've got left. I've got no money, a thankless worthless job, a daughter who I will bury sooner or later, another daughter who still sucks her thumb at age 7 because she has abandonment issues cause she thinks her Momma loves her sister more than her cause I have to travel to take care of her sister...". And then I stopped. I just stopped talking. "Ma'am?" I hear him say. I laugh - I just turned 36 and it almost feels good to be called ma'am - "Oh yeah sorry. Anyways I've got a lot to look forward to - I'll graduate with my Associates in elementary education in May (in my head I'm thinking barring any insane plot the Universe has to bring me to my knees), and at least the 4 of us are still breathing...". "Mrs. Edges my advice to you is to continue to do what you can. Pay what you can. If they send you to collections, so be it. You are doing work that is way above monetary funds. Honestly, off the record, your reward is in Heaven.". I let one little tear drop from my eyes. "Thanks Reese. I am sorry I kinda unloaded on you like that". "Don't be sorry ma'am. You have extraordinary circumstances. You are raising a child who shouldn't be with us anymore. I think you are doing amazing. I wish I could do something for you, but your income is just not enough until you are done with school. But you can't give that up right now. Keep going."

We said another few thank you's and wish you wells and I hung up the phone. 2.5 hours of the most intense phone call I have had since they called me and said she has an "abnormal looking heart". When I hung up I laughed more. Maybe because my life is so filled with intense emotion and hardship that it's like a novel. (Haha secretly as a kid I wanted my life to be like something out of a Danielle Steel novel - now there's irony for ya) And yeah you could say I brought it on myself. But nothing - NOTHING - prepares you for a kid with a rare defect combined with a totally broken and half a heart. I didn't cause that to happen.

Heterotaxy and congenital heart defects along with liver abnormalities have brought me to my knees time and time again. I've lost parts of myself that I can remember implicitly but can't put them into physical action. I have learned to be at the mercy of Murphy's Law.

But no matter what - I never lost my joy. I never lost my laughter even as I helped a nurse pull impacted stool out of my daughter post Fontan surgery. I never stopped laughing for the sheer sake of the insanity of it all.

And I won't. So whatever has brought you to the place you feel worthless, unhappy, unable to see any good in anything - remember your ability to laugh. Even through the tears. Just laugh - I guarantee the heartache will end quicker. Now some people may think you belong in a padded cell - but all the best of us are a little crazy. Come to the side who knows how to party through the pain.

Monday, October 12, 2015

Catalyst for Change ~ Stanford Medicine X and My Unraveling

I woke up this morning and reached for my cell phone like we all do, and clicked on my Twitter app. The usual morning routine. First thing I see is this....a post from my dear Momma Warrior friend Erin Moore.....

It struck me like a hammer. I was speechless and tears welled up in my eyes. I couldn't help but think this was for me. The universe, God, whoever had Erin post this because it was what I needed to see.

I immediately began searching my brain for why this particular quote just resonated so deeply for me. And then it came to me. The past year, what has occurred in the past year. What things have happened to bring me to this point of complete and utter destruction?

For the past year, I have felt like I was coming apart at the seams. Everything inside me, the dread, the worry, the fear, the joy, the agony, was pouring out of me on a daily basis.  It was like a purging. My person was crumbling. Something else was emerging, but the pain of the past terrified me. My marriage was falling apart, my daughters behaviors were out of control. The manager who I worked with for almost 8 years was suddenly fired and I was worried our next manager would not be very understanding of the situation we have with my daughter. and I was worried I would lose the job we so desperately needed to survive.

My entire existence has precariously hung on Alexandra's continued survival. This last year gave us two more denials for transplant for her. One from Boston and one from Stanford.This was the why. this was the reason I was coming apart. It was over. And so I began the cracking, the tearing, because somewhere I had to find meaning in it all. It wasn't even something I consciously did.

I went around destroying others because I was being destroyed. I lashed out time and time again. All because I was so angry. Because here I was, not listening to so many of my friends who begged me in past years to take my daughter to a better qualified facility and now we were stuck. New families wouldn't listen to my advice to leave this facility and I was just so angry. I didn't want another Mother or Father to have to hear the words, "this is it, there is no more". They had missed a gigantic diagnosis in Alexandra, and now she can no longer be saved. All we could do was just keep the full on heart/liver failure at bay for as long as possible. It was over.

A little over two weeks ago, I went to Stanford Medicine X. Immediately I felt deflated, exhausted. Just left with the core essential things I need to survive, nothing else. Why? Because it was the finality of the breaking apart. Med X was where I began to sprout my tendrils of life again. It was when the last bits of the old shell of who I was fell apart. Its why even now two weeks later I am still struggling with this. Med X was my catalyst for change.

It was there that I began the final unraveling of my life. I was with people who got it. People who have stared adversity in the face and said "Boo" right back at it. I have been a part of many groups of people who have children with medical conditions but never have I been privy to such an amazing group of warriors. I think because as parents of children with medical conditions, we feel a certain duty to "keep it all together". But here I was with people suffering from debilitating diseases and they allowed themselves to fall apart. They understood the masks we all wear and said "come anyways, we love you as you". They didn't think my tears of frustration and anger were making me a bad Mother. They felt those emotions were exactly what made me a wonderful Mother.

Stanford Medicine X is a place for acceptance. A place for growth, change and the possibility of a better life. A place where the perpetual grief I have felt for eight years now is cherished and seen as a gift and not a burden. A place that one day I hope to see my daughter attending. I wanna see that daughter of mine give an Ignite! speech. She's got a fantastic story to tell. And its our stories that make us human. Its the culmination of our experiences that make us who we are. Med X is about the story of technology and medicine. Med X is the human condition. Med X is where we go to become who we were meant to be.

Thank you, thank you to the executive board for allowing me to be a part of this community. Thank you to Dr. Larry Chu for creating this amazing experience.  Thank you to Ally, and Kirsten, and Britta, and Kristen, and Cyrena for just being there. Thank you to Marvin for always saying he is going to send me videos of him singing NSYNC but he never does. Thank you to Charlie who is like the cat's meow, and I wanna be like you when I grow up Charlie. Thank you to Abby, for just being the best person at the internet I know ~ and the person who always has the correct GIF to mark the moment. Thank you to Alan, who told me on the first night to "just be you". To my fellow Mommy Warriors Erin and Breck, we got em ~ we can change this world for our kids.

Thank you. Thank you. Thank you Med X for being my catalyst for change. Thank you for being the catalyst for change in the medical community. Thank you for allowing me to bring my crazy world to you and accepting me with open arms. See you next year.....because....

"The Best is Yet to Come"......

Xoxo ~ Danielle

Tuesday, October 6, 2015

Another Road

It's been over a week since I came home from MedX and I've been putting together thoughts as to how I can explain the experience. It is seriously hard to put into words.

Firstly - I have never tweeted so much in my life - and I loved it.

When you spend countless hours of time alone with your thoughts you tend to get this idea of loneliness. I mean - you still go to work, go to school - you do your thing. You continue to put one foot in front of the other cause well - that's life. But you wonder is there any reason for it all? Am I just spinning my wheels? What is it I really want from life? I could go on and on about the countless questions that have gone through my mind over the past 8 years.

8 years ago I gave birth to this little girl. And she was sick. Very sick. She was going to die without surgical intervention. My life took a turn for a different path. I lost all control I had over anything in my life - health, finances, a job, EVERYTHING. She changed everything. But I decided to put one foot in front of the other because her survival is tantamount to anything else in this world. So I put her through 5 heart surgeries, an abdominal surgery and countless other tests and procedures. Then at age 6 we discovered she needed a combined heart/liver transplant. I dug high and low across this country to find a facility that would help her. 3 evaluations later - and 3 No's. What do I do now? I have no more moves to make. I can't take anymore steps forward. 

Then last year I heard about this medical conference - Stanford Medicine X. I applied to be an ePatient and they chose me! I was so excited. But never did I realize the impact it would make on my life. Not until now.

I sat in this hall, this brightly colored hall around people I have never met before. It was like a rave for the practice of medicine. We started to talk to each other. We shared our experiences. We shared the stories that have changed our lives for the better or the good.

You know I've spent 8 years in what I like to consider hell. Stuck in a job I hate - because financially I had to. I did what I had to. 

For almost a year now I have put a job ~ a part time job ~ above everything else, including my children, my Husband, my degree, all above everything else. All because a game was being played for control. I won't stand for it any longer. My marriage almost ended. My youngest child was diagnosed with ADHD, OCD and ODD. All because I was so financially afraid to lose my job. I was a slave, and being told that I should feel lucky to be "put up with". 

MedX opened my eyes. It opened my eyes that there is a world out there that isn't about always about making some sales goal or becoming a robot for some large corporation. I could be respected and understood for my life experiences not for $$ signs next to my name. I was told by a person who has way more education than me that I was an amazing Mother and had a grasp of anatomy better than himself. He was a first year resident doctor. Unfortunately, none of this makes any money, but I will find something else that does. I just can't be forced to literally almost kill myself when there are things I need to do that ensure I finish my degree. 

I know this blog post is long, and its just all over the place but I think its a very good representation of where I am right now. I am lost. I keep getting attacks from every direction I look. I get one fire out, and another begins. This is what I have been doing for years, and its what I will keep doing, but I will be appreciated for what I bring to the table, not for my ability to bow to an entity and do what they desire when they desire it. 

I know I'm angry. I've never felt this way before in my life. I know anger, I've been dealing with various levels of anger for 8 years now. This is different. This is a anger of the realization of what I have done to my family, all for something that should mean nothing in the long run. 

I don't know what else is to come. I can't even tell you how I feel because I don't even have the mental ability to process it. 

I guess this is what happens when you burn the candle at both ends.

But now I know what my priorities are.
1) Alexandra's continued survival
2) Helping my Aria learn to navigate through a life that will always have her feeling as though she is  second in her Mother's sight
3) My Husband
4) My degree/Future Career
5) Part time job 

I won't continue to break little parts of myself apart over the need for control. 

Time to grow. Time to take another road.