Hurt

I am introverted which is honestly the worst thing you can be when your child is battling something like Duchenne.  I used to have all these notions about the person I would be if one of my kids were sick but those were the miscalculations of a woman with healthy kids. The truth is it's so staggeringly painful that I struggle to put words to it.

To most observers Robbie seems fine and we seem happy and I guess in some ways that's true but in others it's not.  Every day Shelby and I are watching him slowly lose abilities we watched him struggle to gain. Maybe to other people it's not dramatic but to us it feels like we are slowly, painfully watching him go. He is dying.  There has never been a person to beat Duchenne, it has always won the war. 

We feel alone, all the time, even when surrounded by the people that love us. Most people don't understand and I never want them to but it's lonely and isolating. We don't ever have the luxury of denial. We don't get to pretend everything is okay. We have to figure out accessible housing and a van. We have to buy a house with a ramp and 36-inch doorways because someday Robbie will be confined to a wheelchair. There isn't a chance he won't. There is no beating the odds, I'm not sure zero percent survival is even considered odds.

People tell us all the time that we make it look easy which I'm never sure if that's a compliment? I mean it is not easy. We don't have to together. The last 5 years have been survival for us. We are in debt because it's really hard to keep your shit together when your whole life becomes about this illness. I keep gaining and losing the same 20 pounds of the 50 I gained when he was diagnosed. I try so hard to be healthy but I keep going back to food. Food is a comfort and there is so very little to take comfort in anymore.

I told my husband last night that I sometimes feel like I'm not allowed to say this is freaking expensive.  Like because we have pretty decent insurance I can't say we are struggling financially.  I can't say I don't know how we will get into this house we need 4000.00 for, or that once that happens i don't know how we will get a ramp.  I can say we should have got our shit together a while ago but our life became about trying to emotionally survive.  I can't justify every penny we spent on vacations and eating out, and movies. I mean I can say we have to get in as much as possible because we have limited time but that is hard for people to understand, i think.

December is not a great month for me. I feel like every December picks the scab and makes it hurt all over again. I have nightmares where I relive those weeks over and over again. I can hear the doctor, my mom's sob when I called her after the first visit, when my aunt called me and I just couldn't speak, and the silence when I told my brother. Shelby and I collapsing into each together when the doctors left the room. Taking the kids to see Santa. That last one I still do not understand what I was thinking. Like I would want a picture to commemorate that day. 

Anyways, those weeks play like a loop in my head. November 8th, when we realized what the doctors were testing for. Honestly, that was a dick move not telling us.  Thanksgiving terrified but trying to hide it from everyone. The Christmas parade in Winder what we deemed to be possibly our last weekend as a normal family.  December 8th, going to the neurologist and realizing he thought Robbie had Duchenne but he didn't have the lab results. December 13th when they requested we come to the neurologist and bring another adult to sit with our kids. December 14th, my mom got there and the 3 of us stayed up talking trying to pretend we weren't going to hear Duchenne the next day. December 15th, the words, the feelings, all of it, I can still word for word describe most of the day.  I'll never be able to forget that pain. It will always be a part of me.

So I don't even know where I was going with this. If I have seemed cold or distant to everyone lately I'm sorry, this time of year is really hard for me. I often wish i could hibernate after Robbie's birthday until January. 

Imagine

I am sad and angry. I'm not fun to talk to me right now and basically, I am licking my wounds. People hurt my feelings a lot this past week. My fear about my ability to pay for child's healthcare has fallen on a lot of deaf ears. I want to share little about how I am feeling. A little bit about why the result of this election is so terrifying for me.

Imagine being told your child's body was slowly going to break down until he lost the use of every muscle in his body. That eventually he wouldn't be able to breathe on his own and his heart would stop beating likely before he was 25 or 30. Imagine there is absolutely no cure, no treatment, nothing you can do to stop it. Your child's life will be a slow agonizing march to death.

Imagine then that someone found medicine to slow everything down, to give a few more years, a few more good years. Years he can play his Xbox and hug you. Years he can breathe without machines. Then imagine that it cost $300,000.00 a year. You need to pay 10% or $30,000.00 a year. You make after  taxes maybe double, maybe triple that but you have to pay all your living expenses too. Imagine you have to say no to that medicine because you simply can't afford it. Imagine not being able to provide your child life into his late 20's. That is what repealing Obamacare is asking of Shelby and me, this is our greatest fear.

Before Obamacare insurance capped our yearly out of pocket but that didn't include prescriptions. Now prescriptions are included in this cap. I believe our family max is $2000.00 which is a lot less than $30,000.00   Tell be how the hell should I feel okay about repealing Obamacare? How am I supposed to not feel betrayed by the people that voted for the guy that wants to repeal it and then try to replace it. He says with something better.

What is something better? Everyone keeps telling us to wait and see. Seriously? This is our child. His illness isn't going to wait. It's not going away while we argue whether healthcare is a right or a privilege.  Then what?  Hope it gets replaced with something that includes all the same language that was already a law?

Am I being annoying and angry? Hell yes, I am. All I hear all the time is ,be angrier Nicole. Advocate. This is me advocating. This election was a lot of people ignoring that.

I accept the results of this countries election. I will not, however, stop talking about this. It is important. We have to decide what kind of country are we going to be from here? What messages are we going to send to our children about inclusion and taking care of those less fortunate than ourselves?

He Fell Down

I don't know how to do this.  It's so hard to be okay when I'm hurting so much.  It's not supposed to be like this.  I shouldn't be awake on a Friday morning at 2:30 am  terrified his leg pain is a break.  I shouldn't be freaking out about wheelchair ramps, and car loans, and doorways.   I shouldn't hear the word terminal over and over in my head.

It just feels like all of sudden it's happening. The Duchenne isn't some day in the future but right now, right this very second. It's like I'm screaming but it's silent, and no one can hear, or no one wants to hear.  He's going to be 10 we are running out of "normal" years.  I'm not ready. I don't know how the hell to do this. How do you slowly and methodically lose your son a little at a time until your grateful he doesn't suffer anymore? 

It hit me earlier this week just watching T.V. "Are we  going to have to lose his smile too?"  I mean smiles use face muscles. It's too much. There's no way to bright side my way out of that thought. It f%&*ing  sucks.

We talk all the time about how weird it is to walk around grieving what you still have.  Sure we can find things to be grateful for and we do but that fear of what's inevitable, it's always there. Every smile and laugh, every picture, every memory, every moment of happiness, it almost hurts. Like that happiness is a band-aid that's going to be ripped off.

I was trying to avoid this but I am really frustrated. We don't have a doctor for Robbie that we really trust. We took Robbie to the ER Wednesday night and I feel like we were kind of pushed out of there w/o really making sure he was okay. I want to call my pediatrician and ask him what to do but I don't trust him to actually care.  I know I sound crazy but it's making me feel so alone.  I feel like I am failing Robbie. I mean do I need to be more hysterical?  Do I seem so calm that people aren't taking us seriously? I won't go into details but it's frustrating to say he has Duchenne Muscular Dystrophy and the response be any serious medical history we need to know about?  Nope, just the one terminal illness.

It's been a frustrating 2 days and I am tired and scared.  I feel a little beat down and I'm struggling.

Extraordinary

Extraordinary has always been one of my favorite words. Of course I like it use  when describing my mom extraordinary yummy chocolate cake, or the extraordinary view, or someone's  extraordinary show of courage, but unfortunately, there is a flip side to extraordinary.

Mine and my families life is extraordinary. It's not at all the ordinary life Shelby and I mapped out, it's not a gothic tragedy, it's not all rainbows but not all clouds either. We are living life under an extraordinary burden. I think sometimes it feels like we are spinning our tires stuck in the mud trying to make extraordinary fit in an ordinary box.

It's hard to be different, it's hard to explain how different our life is even to the people we are closest too. Sometimes it's easy to articulate other times we are sad or angry because we don't know what to say or do to explain what is going on.  Being extraordinary can be isolating. Being isolated is draining.

We have reached the point in this disease where Shelby and I have to start making hard decisions. We are making housing and  medical decisions that I won't bore you with but they are certainly not the decisions we envisioned making at this stage in our life but again extraordinary lives mean extraordinary decisions.

There is so much the rest of the world doesn't understand about living with Duchenne. The toll it takes on a child and their family.  The guilt a mother feels, the frustration a father feels, the responsibility siblings feel, the anger and fear Robbie feels. It can feel like an extraordinary weight at times. It's easy to get caught up in that and truthfully we do have those times.

It's hard sometimes to admit the pressures illness can put on a family, on parents. The times my girls want to do something but know they can't because they can't do it with Robbie.  The way Shelby and I have been cast in this role of like case manager. We are always fighting or discussing, or explaining, and it can make us feel so incredibly frustrated.  I know it's not the fault of other people that they don't understand the unique intricacies of this rare disease. I just wish people.myself included, could muster just a smidgen more empathy.

I didn't intend to make this super sad although that seems to be where most of these posts go. Our life is also extraordinarily beautiful. Every day Shelby, Kelsey, Madi, and I get to witness strength and courage in the flesh. We tell each other "I Love you" all the time. We laugh as much as possible every single day. We fight an extraordinary fight everyday. It can be exhausting,frustrating, beautiful,sad,happy, and always extraordinary

14 Years

I didn't know when I pulled into that steak and shake parking lot looking for a red car (maroon is not red) my life would be forever changed. I never planned on finding my forever before I was old enough to drink but there you were.  Actually, that day when you hugged me goodbye I was sure I'd never hear from you again. Seriously, worst date ever. 

Life threw so many curveballs at us. So many times we could have given up but we just kept trucking on. That day, the one that changed everything, I remember your hand. I remember gripping it so tight and you were doing the same thing. The months that followed were the roughest months of our marriage. I never thought it would be the end but I remember feeling like the joy was gone. I remember asking you if we were still allowed to be happy.

I used to think we were lucky to have each other. That us finding each other on that stupid website was somehow the fates aligning or some shit. I know destiny may have played a hand but that you and I have done the work. I'm not giving that credit to anyone or anything but us. We aren't lucky to have each other we damn well earn each other every day. I'm proud of the way we have raised our kids, of the love they know,  of the love they see their parents share.

Knowing

I don't know what its like to have a childhood under the shadow of terminal illness.  I will never what it's like to ask my mom if people die from this thing happening in my body. I don't know what it's like to take steroids and have them make my life miserable while they work to prolong it. I don't know what it's like to watch steroids ravage my brother's body changing his appearance and his moods. I know my kids have a bond few get with their siblings, I know my girls have shown grace where they could rightfully be jealous and I know my son has a strength few adults possess.

I know what it's like to be given only hope in a hopeless situation. I know what it's like to hold a marriage together when a diagnosis breaks you in places you didn't know could be broken. I know how hard it is to hold your spouse while they are racked with sobs and have no words of comfort and I know what it feels like to be the spouse racked with sobs.  I know what it's like to sit in a meeting knowing all these people talking about helping your son will need to be reminded at least once a month about what you agree on.  i know what it's like when you are suddenly cast in the role advocate with no warning and no training.

I know what it costs this family every time we have to explain steroids to people that don't live this life every day. I know to respond with a hug when the world says "spank that child." I know what it's like to hold my tongue when someone tells me now is not the time to think of Duchenne, the future, the deep dark abyss of sadness, steroids, because it is not reality for them.

I know I can be annoying and loud. Selfish and unbending in my desire to be honest but I know it's Robbie's only chance. I don't share my families pain because I enjoy the world seeing my ugly parts. I share our pain because it is real. It's not an inspirational story of finding strength. It's 5 people connected my marriage and love not rising from the ashes but existing in the ashes.

Birthday

I found myself dreaming today about the 2 story craftsman house we used to plan to get. I remembered thinking about whether the cost of granite counters was justifiable. i remember vividly touring the models and going home and planning out the life we would have.  The 3 kids, the work from home job for Shelby, finishing school and getting a degree once our kids were is school full time. It was never grandiose. It was simple. I wanted a degree in history who knows what kind of career that would lead too but it was only a dream.

it's hard when dreams die. When life takes shape in a million ways you never saw coming. I never imagined our marriage would be this strong. That as much as I loved him at 20 it was nothing compared to my feelings at 35.  I didn't know how amazing and difficult it is to have more kids then hands. How proud and amazed you can be by these humans you made and how totally frustrated they can make you. 

I never thought we would change Michigan for Florida. That we would trade Florida for Georgia. It was in Georgia that we had the best of times and it was in Georgia that we were broken.  Ask Shelby or I and we will tell you that leaving home and starting over so far from our families was the best thing we ever did. It was hard and scary but twice we built a life for ourselves, Twice we started over and twice we survived. We depended so wholly on each other and we grew up, and we became stronger together.. 

The craftsman with the 4 bedrooms upstairs is never going to happen.  The college degree while tempting is just not worth the time away from my family.   My dreams aren't simple anymore. I want a cure or treatment for duchenne muscular dystrophy. I want my son to still be able to hug me 5 years from now. 

I don't know if it's really dreaming I do these days. Honestly my life occasionally feels like this horrible nightmare I should wake up from, but I don't.  I'm not the mom or wife I was all those years ago. In some ways that's good. I can communicate with my husband better. I don't white wash life for my kids, although its certainly tempting from time to time. I love harder and more honestly and I try, I try so hard to let go of old hurts even if if just so there's room for all the new hurts coming my way. It's not all good  I'm quick to anger and quick to dismiss.  I'm jealous when I don't want to be and crying when I should be smiling.

Today is my birthday, if you know me you know I'm worse then a 5 year old. I love Happy Birthday, cake, and balloons. This year doesn't feel celebratory. The duchenne community is scared. We've watched as clinical trial hopes have been dashed one by one.  We've heard emotional testimony from people we don't know yet somehow we do know. We all know how precious little time we have to save our sons.  I trust the FDA to make valid reasoned decisions, yet I fear they are making decisions based on old science and old testing.

For my birthday this year I hope the dream of this 35 year old to be hugged by her son at 40 doesn't die. i can live with out the craftsman, I can watch enough history documentaries to compensate for that degree, but i don't know if I can live w/o my child's hugs.

Insurance

Today I asked my husband and his brilliant mind to write about health insurance. It's a post i struggled to write because it's emotional for me. Shelby is always good at translating Nicole and also getting out what he needs said as eloquently as possible. I'm not saying I agree 100% with all of his opinions although I think this is one instance our shared experience leads us to the same conclusions. Neither of us want to turn this blog into a political argument but we do feel our voice is getting lost in the anger of 2016 politics. Take it away, babe...
It is going to be a long post so if you don't feel like reading here is the overview, it is about health care, I feel both parties have it wrong, and I hate the fact that 10 sec sound bites are the "solution." It is a complex issue that will never be solved with rhetoric. This post is from my view point navigating the system with a kid with a rare terminal illness so every one's mileage will vary. That being said the long form is below if you decide to read it.

A Full Pantry

So I'm not sure if I've been clear enough here but I've never intended for this blog to be inspirational or inspiring. I know there are many people in the duchenne community that fill that need. Me? Nope I'm angry,sad,agnostic,and just trying to get through this and figure out what it means for my family.

That's not to say I'm angry all the time but I just can't say this is just God's plan and accept it. If I'm being honest I'm kind of jealous of those that can find peace there.  I can only tell you what I'm feeling and where my mind goes too. It's not always going to be comfortable or inspiring but it is as real as I can be. It helps me to say what is going on in my head. I honestly hope that some day we can live in a world where being sad and angry or even crying isn't seen as a weakness.

So now that that's out of the way let me tell you about a small moment of peace I found at 5 am Tuesday morning. I couldn't sleep something that has plagued me my whole life and especially when I'm dealing w/ happy or sad things.  Or in this case just the bittersweet knowledge that Robbie is eligible for a wish from Make a Wish of Michigan. It's awesome and amazing and I am so excited for him on one hand. On the other hand honestly none of us have these kids hoping they qualify for a wish. I am so touched by what this organization does for children but so sad one of my kids fits the "life threatening illness" eligibility guideline.

Anyway, 5am and I can't sleep. Staying in bed isn't helping. I decide to pack lunches that way at least I will have a head start on the morning. I go into the pantry and it hits me. Though our challenges are many and our family faces a lot things that are frankly unfair, I have a fully stocked pantry, I can walk into my pantry on nearly any day and make my kids a meal. No, it won't cure my baby but it's something to smile about.

That's the real challenge,right? It's not about strength or weakness. Sometimes it's just about finding the small happy thing to get you through the damn day or a few hours of sleep in my case. I think Shelby and I have worked very hard to keep my kids life as happy as possible. We don't lie to them or shy away from the harsh realities in their lives but we freaking laugh and smile as much as we can even when we are crying.

So my full pantry won't cure duchenne. It won't  cure my emotional insomnia. It won't change my children's harsh realities. It will only give meals to share together and when your time w/ kids is threatened to be shorter then most, you share whatever you can for as long as you can.