Thursday, December 31, 2015
I am beginning to believe that to get past everything, I have to lay everything out. I have to say everything I think and feel.
I don't believe a word you say. I'm not sure I ever did. What I hear is stories. And they aren't real. There is no proof of them. The older I have gotten the more I believe in proof. In the cold hard facts. I see none of these.
What I do see is the man I married. A man who had a tortuous childhood. And for that I am truly sorry.
I love you. I do. But I can't keep living with the stories. I just want the truth.
When our 8 year old daughter asks me "so if Daddy is a doctor then why can't he help me?" ~ I don't know how to respond. All I could say is "Daddy isn't a doctor." Her response "Well he gave up, so he gave up on me.". I defended you. I told her "No no Daddy did not give up on you, he had no idea he would have a daughter like you back then.".
Aria asked me yesterday while at the grocery store "How come I see Grandpa holding Grandma's hand but Daddy never holds yours?". I didn't even answer.
You say that it goes both ways. And it does. But what you don't understand is my need for you to be the man. For you to lead. I'm tired. I am really really tired. And I know you are too.
You called me a lovesick bitch for doing what my boss at work asks. For a mistake in the schedule that I had made. As if I could love a misogynistic pig like him.
I told you I don't believe your past. And I don't. And I don't care what your past was.
What I want is you. I don't give a care about what happened before there was us.
If she doesn't make it, both of us know this marriage won't survive. And you know as well as I do what that crow in the backyard yesterday meant. It may not be her ending, but it was the sign of a possible ending ~ of a death of something should we allow it to happen.
There can't be any more excuses of "We never have the time" or "I'm so tired".
I need you to love me. In more than just words. Like a man loves a woman. And I know you have never had an example of that, and I am so so so sorry for that. But I know you know what to do.
The girls are gonna be loud. They will scream. They will get annoying. But we can't let it ruin everything. We have let it ruin us. Now I don't know what we are to each other anymore. All I know is we are not lovers, or confidants anymore. We are friends yes, friends with a mutual interest in our family. But there is no interest in each other anymore. It's why I seek out others to connect with. There's a wall between us.
I'm so sorry. But I want you to know I love you. And I love you in the way a woman loves a man. I want to feel the way I did when you moved down here from Minnesota and I had rug burns on my legs. I want us to be us again. To laugh. For you to smile like I said you used to smile like David Tennant did as the Doctor. (Why do you think he is my favorite? Because he looks like you! Why do I love Loki? Because he is tall, thin and mischievous like you!)
I want our children to see affection and love from and between their parents. I want them to tell me about things you did with them. Places you took them while Mommy was at work.
I know you will be mad I put this in the public realm. But I think ours is a cautionary tale. It needs to be heard, to be read.
I don't want others to fall prey to this. To lose sight of one another because of the addition of a medically complex child. I gave my everything to her, while you shut down and retreated. Its neither of our faults.
Come with me ok? I want you to come with me. Come with me. Be that adventurer I knew you as. Hear the joy in the annoying noises our children make. Be my lover, my confidant again.
Come with me.
Monday, December 28, 2015
Sunday, December 27, 2015
Tears, I heard that line and tears. A teacher of hers had mentioned how they wanted to make Christmas extra special for us because we never know if this will be the last Christmas we share with Alex. What a cold hard truth. And when I heard those lines.....it hit me. Christmas night she cried, she didn't want to go to sleep because she didn't want Christmas to be over. Did she know something I didn't? Sometimes I think she does. Then I go to sleep and dream it was Last Christmas. I know it's totally stupid to believe in dreams but I think it gives insight into what is occurring in the bottom of my sub-conscious mind. It is insight into my soul, the entity that animates me and makes me who I am. And while I am many things, the one thing that has truly defined me as what I am is her ~ her existence in this world. What I do, and what I do best, is be her advocate. I manage her. I make sure she takes her meds, eats, drinks, I monitor her vitals. Even as I sit here typing this I turn around (for the umpteenth time this hour) to remind her to 'DRINK YOUR FLUIDS ALEX!". It has defined my days, my nights, my inner self. I do other things ~ I have a job, I sell diamonds ~ I go to school ~ I teach ~ but what I really do is do everything for her.
Because without that every single minute of every single day of my existence devoted to everything Alexandra Mae ~ I have nothing left. I gave it all to the continued survival of her, and nothing else matters.
What many people don't understand is that this fact of giving everything to this one calling is dangerous. I have isolated myself from my Husband, my other child, even isolated myself from myself.
My Husband and I exist as ships passing in the night ~ a hello and then a goodbye, with a few "oh yeah we gotta pay this bill or don't forget Aria's Christmas concert on Wednesday". We don't talk. We don't touch. We don't kiss. We are nothing but worker bees devoted to the grind of ensuring we can continue to travel to Boston to take care of her.
Am I mad that this has become our existence? Not really. Its all I've known now for 8 years. I got over that anger a long time ago.
But when the idea of "Last Christmas" comes to my mind, and the fact that should that come to pass, I will be left with nothing to continue on with ~ I worry for the survival of this family.
I worry for my Husbands mental health should we lose her. I worry for mine. I worry for the look on Aria's face as she sees her sister in the casket. I can visualize it. I can see and hear Aria cry out "Sissy! Wake up sissy!" Would I be able to be the Mother Aria needs me to be should we lose Alex?
I try to live in the moment, I do. But the moment is oftentimes tainted with the tears of tomorrow.
Alex and I leave in a week for Boston. Is this Christmas "Last Christmas"? Can I spend the next year with the sword of Damocles perched above this families head? Do I even have a choice?
Every Christmas is Last Christmas. Clara lost her love Danny Pink. Danny told her that each day she could give him 5 minutes to grieve, to mourn, to be sad, but that was all she can do. She has to give every other minute of each day to growth, happiness, and truth. Can I do that? Can I give myself 5 minutes each day to mourn the what ifs, the how comes, the whens? (did I just create a New Years Resolution for myself?) Can I live in the moment without those tears of tomorrow?
I don't know. I don't even know if I want to. Melancholy has always suited be better.
Every Christmas is Last Christmas.
"Do you know why people get together at Christmas? Because every time they do, it might be the last time. Every Christmas is Last Christmas"
Thursday, November 26, 2015
"I don't know how to reconcile my anger."
Those are the words that came to my mind while in the shower this morning.
Isn't it funny how the best ideas come while showering?
All morning I had this pit inside me.
Alexandra was refusing to drink, refusing to eat - I had to pack up everything for her to spend the night at my folks - because I have to work til past 1am.
I shook with anger. I was having a mini panic attack.
So when I finally began to get myself ready - I started reflecting on what drives me to this point - it happens often. Why do I get so angry?
I don't know how to reconcile my anger.
Even as I sit here I catch a side view of her belly - full of ascites from her liver - and I fume. If I was in one of those cartoons I'm sure you'd see smoke coming from my ears. Anger. It consumes. It destroys.
Yet I don't know how to control mine. I don't know how to resolve it. It just perpetually eats at me.
I hate everything.
It's mentally exhausting - the trying to hold it together.
How do you resolve anger? Pray? I've been doing that for years with no change.
I'm angry that I'll lose her. I'm angry she isn't doing as well as other kids like her. I'm down right pissed other kids with this condition are suffering and on the brink of the unthinkable. I'm so angry that some of these children have suffered the unthinkable and now their parents arms are empty.
I'm not Thankful. How can I be anything but angry over this life I live?
We're facing financial ruin - again. She has got to get to Boston again in January - I have no clue how I'm going to pay for it.
I work, I go to school - but I have nothing to show for any of it. I keep putting one foot in front of the other looking forward to the future but all I see is the never ending financial battle for survival.
We can't even pay the mortgage in full every month. Who knows how much longer we can keep this up?
So yeah I'm not very thankful. Call me names - call me negative, but I'm not thankful today.
Anger still rules my heart - even as hard as I try to see the positives in each day.
Anger. It's what's left of me.
Friday, November 13, 2015
I watch her do the walk/run thing she does with the most gigantic smile on her face. Her left leg and foot turn in from the curve in her spine. She hobbles along oblivious to what the rest of us see. "Dream Team, Fun Run" - the words that come out of her mouth. She dances while she hobbles along, blissfully in each step she takes towards completing another lap. She is beautiful. And I wish I was her. I wish I was the one smiling and ignorant to the real reality that exists below the surface of her life - of our life.
It's the first time (and this has been coming for some time now) that I have seen the physical ramifications of her condition. Before she looked normal - besides the purple lips - now the bone deformities are beginning to show and her ability to move is becoming more difficult. The curve of the scoilosis is above 40 degrees now. The left leg turns in at about 20 degrees. She spends time in pain after physical exertion. I am beginning to see the signs of decline. Her belly is filled with the ascites from her liver. I want so desperately to get rid of her GTube - she will be 9 next July - but I know her decline will increase rapidly if I change her nutritional intake.
But the answer still remains at no. No transplant. "She'll bleed out on the table". Words that echo in my mind. "It's just too risky, 5 heart surgeries of scar tissue to go through - she's gonna bleed out before we can remove the diseased organs". The answer remains no.
But today I saw the future. I saw my Big Girl as she would be in the near future. Her endurance small, her physical pain increased but still mighty in heart. Still alive with a smile while shaking her "booty" as she calls it.
Alexandra - you are mighty. I wanna be just like you. I want to take this burden from you.
But our answer will remain no. And we will keep going cause that's what we do. But I will continue to carry that image of her - hobbling and swinging her little frame around like it's no one's business - with me everywhere I go.
I can't change this path. The words I once said "Well how is sats of 80 gonna feel like at 15! She will get winded getting out of bed!" still echo so loudly.
Those words are coming to pass. Her body cannot do what it used to. She is in pain.
But the answer still remains no.
Wednesday, November 4, 2015
I have dreams. Lots of dreams. Not the "I'm asleep, dreaming" kind of dreams but the kind of dreams that live in your heart.
Someone asked me the other day "What's your greatest passion?". Honestly at first I thought to myself "sllleeeeeepppp", but I replied "Keeping my daughter alive".
What a loaded answer.
I'm passionate about many things - its whether or not I will have the opportunity to accomplish those things that really comes into play.
My life isn't easy. But no one's life is easy. We all battle something.
So what do you do when the support needed to accomplish those things isn't there? I don't know. And its where I am now.
I don't want to give up on my dreams. But there are some that may not get accomplished. I can't continue to berate myself for those things. Circumstances just won't allow them to work. So in a way you give them up and put your energy into something else.
It won't be a wasted life leaving some of those dreams behind. It will be working with what I have.
I've learned so many things about myself in the past month or so. And I've realized how I really feel about the world and my place in it.
I've come to terms about the way I feel about my personal relationships and how while they are not what was originally intended I will continue to honor the promise I made. I made the decision to carry more than my share and I know I can do it.
It's gonna be what it is. I may not have control over some of it but I can decide how I will react. So I react with grace, strength and fortitude for the continued fight. I have learned to sway in the gusts of the wind and not break.
My heart is still broken - yes. It always will be. But that's how pain shapes you.
I've got a story to tell. It's sometimes beautiful, joyful and other times its down right horrible.
I am what I am. I'm a product of the environment in which I live in.
Take me as I am.
Also this is the kind of blog posts that get written when you have had no sleep.
Friday, October 16, 2015
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
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
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.
Saturday, September 26, 2015
These people GET IT. They think like I think. Our humor is the same. We find the joy in every detail. They laugh majestically. But most of of all these people LIVE. They live fierce. They live real lives. Lives full of pain, heartbreak, loss, but so much HOPE.
I found my tribe. I found my tribe in Palo Alto, California, and I can barely keep the tears inside me.
When you have an experience like this, its like all the light bulbs have come on. I can sit with these people for hours and the conversation just continues. And its not shallow conversation. It is serious, REAL LIFE talk. And the laughter never ceases. We share, we laugh, we even cry. We just feel. And it is so amazing. I am just in awe.
I am just in awe, I had to write a little bit about it. So thanks to my newfound tribe. Thank you for welcoming me into your arms. MedX peeps rock.
Monday, August 17, 2015
I'm a caregiver, but I'm also a patient thanks to that job of care giving. I come to MedX seeking to relate the two worlds, and how we can improve the lives of the family and friends we care for as well as our own lives as caregivers.
I'm a pediatric caregiver, which is a very special sub sect of the caregiver role. I'm the caregiver, but I'm also the parent. I'm the cook, the maid, the nurse. I'm her medical coordinator. I spend countless hours scheduling appointments with doctors and case managers.
With all that I do to just "keep her alive", it can easily be seen how I myself became the patient, in the form of mental illness.
So what can I bring to MedX? What can MedX teach me? I am so excited to find out. I'm looking forward to the Ignite! talks and speakers. I am so very excited to meet Dr. Larry Chu, and thank him for this wonderful opportunity!
I plan to come at each and every discussion from direction of the caregiver and how it associates to my role as caregiver, and also my role as patient. I will especially look to how we can relate this to the world of pediatrics.
In my workshop, I plan to discuss how we as caregivers, parents, and medical professionals can have easy access to data on our patients, whether they be lab results, radiological reports, and anything pertinent to the daily care of the individual. By allowing caregivers, and patients access to their own data, we can encourage active participation in health care, and have better outcomes as a result. eHealth is the future of all aspects of health care, and it is a vital necessity for medically complex children.
Medicine X is just the place to do this. I am so excited to have been chosen as a delegate this year. I have spent the last few years working to change the world of medically complex children, with special emphasis on children born with Heterotaxy Syndrome and Complex Congenital Heart Defects.
I also want to bring the issue of mental health as a caregiver to the forefront at MedX. So many of my fellow delegates not only have chronic health issues, but most of us suffer from some kind of mental health issue. Be it depression, anxiety, or the like, we all have been through the mental and emotional trials our condition or our loved ones condition has brought upon us. It is time to stop the stigma and embrace mental health.
I cannot wait to meet my fellow warriors at MedX. Together we will merge health care, social media, and technology into the best year for MedX yet!
I close with my utmost favorite quote that describes this band of warriors known as MedX delegates and Alumni.....
Friday, August 7, 2015
We get so wrapped up, so into everything we do to keep our special needs kiddo alive, that we just assume the sibling is okay. They may be like my youngest, they have their moments of breakdowns, but you figure they will grow out of it. And then, in the blink of an eye they are 7, and that breakdown they are having is not appropriate for a 7 year old. In fact, much of their behavior is quite scary.
Here comes the guilt. Mommy guilt. I ignored her, I abandoned her.
I began noticing that Aria's behavior became much worse in the last two years. Ever since I began to travel to take care of Alexandra. The intense thumb sucking at all hours of the day. the breakdowns, the hitting, spitting. I almost decided to not travel anymore. Then that created more guilt that I wasn't doing enough to ensure Alexandra's survival. Fact of the matter is, Alexandra is not going to get any better, she is only going to get worse. My need to care for Alexandra is only going to grow. How can I choose between my children? Aria throws guilt and hate at me constantly. She says I love Alexandra more than her. Of course none of this is true. None of it at all. But one child does require more attention than the other. It is just the way it is.
So now, after realizing that Aria has become prone to panic attacks, OCD moments, and possibly, SPD, she will be evaluated for these behaviors in early September. I feel like the most gigantic failure in the history of failures.
I have failed my oldest child because I can't find anyone who will give her a transplant. I am exhausted from doing the daily coordination of everything that comes with managing her, working part time, and going to school that I can't help her do her homework because I just don't have the mental ability to sit and fight with her on it because the fight of just keeping her alive is overwhelming.
I have failed my youngest child by not attempting to get her help earlier. I repeatedly have asked her to be quiet or give me a minute before attending to her needs because I was busy attending to her sisters needs. I have constantly asked her to take a backseat to her sister. I have consciously, and unconsciously put her behind her sister. Why? Because no matter what I figured she would be at my side. And because I put every single ounce of my sanity, my strength, my will, my time, my own soul into Alexandra because nothing matters unless she lives. Without Alexandra, I am nothing. Every bit of strength and fortitude comes from this battle with Heterotaxy/CHD/Abernethy. All the knowledge, every breath I take is made for Alexandra. Its almost as if she stops breathing, I stop breathing. I gave her my own will to live because nothing else matters except for her survival.
So I had nothing left to give Aria. Its the truth. I had nothing left to give. I didn't hold her like I held Alexandra. I didn't talk and spend time with Aria. Because I had to quickly get Aria taken care of so that I could attend to Alexandra's care because it was much more time consuming.
So whats the moral of the story? What piece of advice can I give you? Your child without special needs is actually more in need of you than the one with special needs. The special needs child is resilient, strong, they have been through tremendous things that give them their fortitude. The sibling has been left behind. The sibling has been pushed aside. And while you may think you are doing a fine job of ensuring the non special needs child is getting their needs met, you aren't. I guarantee you aren't. I know its daunting. I know its sad. But it is the reality of the world we live in. Its the reality of the family with a child with special needs. But what occurs is, the entire family becomes special needs. And that's what we ignore.
Be aware of your other children without special needs. Don't let yourself become like me and awake up one day and realize this is what is happening. Get help. Don't be afraid of the stigma. You are living an extraordinary life. This is not normal. Don't try and make it normal. You will kill yourself trying to make it be normal. I know, because I've tried.
As always friends, take care of you.
Monday, May 25, 2015
I just went blank, then began to cry.
I was just done, just so over it.
When you hang the successes of life on the idea of a child surviving ~ this is what happens.
Because without her, life is nothing. It would be nothing. Every single step I take, every thing I do is in support of keeping her alive. I don't do things for the sake of my younger child, I don't need to. I do everything for her. And it's killing me.
I work more hours at my job ~ because its nearly impossible to make their standards working only 15 hours a week ~ I do this so that I make my standards and maintain my job security. I try getting other jobs, ones that don't require sales goals ~ but they don't pay enough. I have to work. I want to work. I am better when I work.
My job isn't the problem. Its my life as a whole.
Almost 8 years ago now I made a deal ~ a very important deal. I agreed that I would take on this complex child and do whatever was necessary to keep her alive. I had to, I'm her Mother.
I am left wondering at this point ~ 8 years into this ~ where I went wrong. I did exactly what was necessary to keep her alive. And look at her she is thriving, but I am dying. I am drowning under the weight of traveling 3000 miles for medical care, figuring out how to pay for the expense of travel and medical costs, and all the other necessary things that go along with getting medical care out of state.
My youngest is a terror. An absolute terror disguised as a joyful child. Her eyes could kill you.
I am dying because every single day is a fight for food, fluids and meds. For getting her out of all the TV's in her head and to focus on the things I am saying so I can help her survive in this world.
I feel so horribly selfish. I am a Mother, I should be completely without self. But what I have learned is that without the self the Mother cannot exist. The Mother becomes a robot filling meds, making numerous calls for med refills, doctors appointments, therapists, and the like. She continues to put one foot in front of the other ~ while highly medicated ~ just to find herself at the end of the day frazzled and exhausted.
I do nothing for my youngest, and when I do, I get exhausted from it. Because I am already exhausted from taking care of the oldests needs.
I am dying and I don't know what to do to stop it. My family vacation turned into a trip for surgery. We can't afford to do both. This entire household revolves around her condition. So it defines us. We don't have the means to not make it our entire life. Everything we do is in response to what she is able to.
I have hung my hopes of a future on Heterotaxy. I have hung her future, mine, my Husbands and my other child's successes and future on her hopeful survival. What concerns me? What would happen if she didn't survive. I would be left with nothing, because she is everything.
Even my youngest told my Mom that Jesus sent her to me to help me. How sad!!?!? She thinks her purpose is to help me with her sister! She doesn't even have her own identity. Heterotaxy has become the identity of everyone in this house!!!
I sold my soul that day. When I called out to her on her date of birth "Cry for Mommy, Cry for Mommy Alexandra", I signed my name in blood over to Heterotaxy. Because without her, I am nothing.
This is a gift and it comes with a price. I continue to pay that price. Sometimes I just wonder how much more I have to give. My coffers are almost dry. How much more can I take? Only time and God has that answer.
So tomorrow, I will get up and go to work, like the catatonic state I was in today never happened. I will put my smile on, and the show will go on. Cause I have no other choice. With her I am nothing and without her I am nothing. I have never loved so deeply in my entire life. I have never felt so selfless and so selfish at the same time in the whole of my existence. I have never felt more empty yet so full I could burst all at the same moment. The world is ending and beginning all at once every single day.
All we can do is hope. I hang all myself on hope.
Friday, April 24, 2015
I've learned a lot about the human condition thanks to social media. Some of it good, some of it bad. I've seen it turn me into a raving lunatic, and then seen it give me some of the most heartfelt and beautiful declarations of thanks I have ever received in my life.
Last October, I went a little crazy. Not like totally crazy, but I was in quite a state of panic. My long time manager (and friend) at work had been demoted, and I wasn't sure if the new manager would keep me with my limited availability thanks to the demands Heterotaxy/CHD puts on me to keep my daughter healthy. All I knew was I had to work to keep food on our table. I lashed out. I told people about a good friends past transgressions, all because I felt left out. Because I was not able to go down to the hospital and support a Mom who desperately needed it. And because this other Mom had the ability, (she didn't work and go to college like I do - lucky lady) I was upset. I thought we were working as a team, but it seemed like that wasn't happening anymore. And you know, we probably both were wrong. I know I was. So I, in a drunken stupor, told fellow Mom's like myself and this friend of mine, about her transgressions. This got back to her because of another Mom who was at this "night out". It was deemed as me trying to spoil my friends successes, which was not at all the case, but people can think what they want to. I was drunk, upset that things were being kept from me, and concerned that the local hospital would tell a family that they could not publicly announce that their child receiving a heart transplant. I don't care if they did it out of respect for the donor family, no other hospital I have ever heard of has asked a family who is receiving a donor heart to not tell anyone. It just seemed fishy to me. I was mad. I felt the local hospital had no right to operate on this child, and has no right to operate on any child with Heterotaxy and Complex CHD. I projected this anger on everyone. And for that I am truly sorry.
So about a month ago, I left the Heterotaxy Community at large. I had become so involved in others lives, that I lost my own. Let me tell you something. People will believe what they want to believe. It won't matter if you shove data, mortality rates, or even the known history of a facility in peoples faces, those people will do what they want. Its not even worth it. So I gave up trying to help other parents like myself. I couldn't do it anymore. I figured if they really wanted my help and advice, they knew what information I had and if they wanted it, they could find me. And one did.
A friend told this Mom about me, and we began discussing. It was wonderful. And I helped this Mom. I helped her navigate this new diagnosis, and she publicly thanked me. I didn't try to shove anything down her throat. She understood my knowledge of the situation.
I left the Heterotaxy Community because I felt left out. Because I do not have the capability to give freely of my time. I felt so horribly left out. I was jealous. Jealous because I have to work. Some of these Mom's don't so they have the free time.
What I have learned is ~ I am glad I work. I am glad I go to school. I have never felt better and more at peace with my situation. Not letting Heterotaxy be the end all be all of my life has helped me so much. I have a child with Heterotaxy, Heterotaxy is not the sum of my existence. For my own mental health, all this was necessary.
Now I can hear God speak to me again. Before I couldn't hear Him. The cacophony was so loud, the tearing up of myself to get others to see the light was destroying me. It is not worth it. I will never be Ghandi. or Mother Theresa. I'm just Danielle. And Danielle is much more than a Mother of a child with Heterotaxy.
And to that old friend that I "betrayed" ~ I am sorry. But as you can see, you have the success you desired. I am so very glad that you do. Thank you for being there for our rare and precious children.
My plan for the future ~ begin to work with the medical professionals that help these children. That begins with the Stanford Med X conference. Either Med X will change my life completely, or I will know that professional advocacy is not in the cards for me. If that is so ~ then I know exactly what I am to do ~ teach.
Thanks to everyone for the support, love and well wishes over the years. I will still be around. The pulmonary AVM specialist will still be available should you need her, but she won't chase you down and try and convince you to go to Boston, CHOP or Stanford. Crazy Danielle is gone.
Thursday, March 5, 2015
So please, why won't we ask those questions? Are we afraid?
Why am I the only one that is so concerned over what is going on? How come we suddenly have a ton of patients with never before discovered AVMs? Patients with PVS? Sudden transplants on Heterotaxy patients? Not even the most experienced centers in the country are performing transplants at this rate on these patients.
I know everyone just hates me cause I ask these questions. Why continue to go there when you know how many times a person has botched a surgery? We are all human, but seriously, there is some gruesome details about these things out there. And then when a surgeon refuses to apologize for his mistake.....
And can we realize, that even when we ask these questions, we may get answers which are lies? This is a business, I run one myself everyday. I will tell you whatever I need to to get you to choose me. I will tell you everything you want to hear so you will give me your money. Its a game. Is it a game we play with a child's life? I think not.
We have to demand more. Ask more. And then ask again.
If you have private insurance, you have nothing tying you to this facility. And if you do not have private insurance, by you asking these questions, these hard questions, you force them to realize their inadequacies and then they are forced to send more complex patients out of state for care. Then your Medicaid has to pay.
Ask the questions. Don't let it go. Don't take yes. Scream no.
Sunday, February 8, 2015
I was thinking about this post I had read the other day on Facebook, a blog about overcoming a crisis, and how you may not be still in the exact crisis, but you are still "burnt" from that crisis. ( I will post the link below) It was extraordinarily profound. I didn't even have words for it. But my soul, my mind wanted so bad to make sense out of it. How can this blog post connect to the world of CHD? How can this post speak to us as parents, caregivers and loved ones of children affected by CHD?
Collaborate and listen, here we go.
We are firefighters. Us parents, and caregivers of children with CHD are firefighters. We put out little fires every single day. Every single dose of lisinopril, lasix, aspirin, warfarin, we are putting out a little fire that could rage into a full grown wildfire if it attended to immediately. Every single time we drive to the insane amounts of doctors appointments, IEP meetings, we are putting out fires. Its no wonder we are still burnt! Our child may not be in the gigantic risk zone of say an interstage HLHSer, but we still are burning from that moment, that crisis. We are firefighters.
Think about what a stressful job being a firefighter is. Alarms going off in the middle of the night for a call waking you up out of a sound sleep. For some of us that alarm is the sound of the feeding pump going off, or the sound of the pulse ox. We live in a constant state of alarmedness. I know thats not a word, but that is what it is!
Sometimes, the fire we currently fight is bigger than the little fires of everyday. Our child is inpatient, post Fontan, or post Glenn. Or post Rastelli, or Norwood. Or post full repair for ToF. Or they have just had a heart transplant. At that point, we are in the crisis. We are deep in the wildfire of our childs fight for life.
Sometimes when we are deep in that fire fight, we breathe in the smoke, and it burns our lungs. But we go on, we have to. Its our child. But that burnt taste in our mouth perpetually lingers. It never goes away. It gets easier to deal with, but the damage is already done.
So yeah, we are like firefighters. We battle fires everyday. And it takes its toll. I see your dark circles. You see mine. We can look at each other and not say a word and just know what the other feels.
So suit up Heart Moms and Dads. We got this. Put your respirator on and get ready to put out those fires. I've got 5 syringes of meds to administer right now, so here I go!
To read the blog post about crisis, and remaining "burnt" follow this link below....
Friday, January 16, 2015
We have had some tragedy here locally over the past year, And I for one, cannot ignore tragedy. We all know some patients just aren't going to make it. But these issues, these issues resulting in loss were not warranted. They could have been better managed patients that would have resulted in a better outcome. So how can we better manage patients with these complex conditions? Its really simple, a multi disciplinary approach. Ensuring that these patients are seen by a myriad of specialties is the only way to get better outcomes. Proactive care is what is needed instead of reactive care.
These children need to be cleared by all indicated specialties. Not just cardiology. Hepatology, Nephrology, Immunology, Neuro, Endo, GI, and so many others.
Patient presents, patient is seen by cardiology, and surgery is done if needed. Then the patient goes through the "roadmap" of sorts, they see general surgery to discuss malrotation, GI, Hepatology to look at any liver issues as well as liver vasculature issues, Immunology to discuss vaccinations, and to discuss immune issues.
No patient should be 3 or 4 years old and not been seen by general surgery to rule out malrotation. No child who is a single ventricle Heterotaxy patient should undergo a Kawashima or Fontan without proper mapping of the liver vasculature.
Fact is this ~ we MUST know the child's anatomy, in its entirety. The only way we can properly manage and care for these patients, is to proactively image and monitor these children.
I dont want another parent to have to bury their child. I dont want another parent to have to hear the 3 no's for a transplant, and theres nothing else they can do for your kid like I have. We can make it better. We can advance the practice of medicine. With parents as partners in the world of complex pediatric medicine, we can improve outcomes.
I'm ready, are you?