stress

One day the inconceivable (Princess Bride!) became my reality. A year ago at this time we thought we were starting an amazing year. We were quite wrong. 

The weight of DMD is so unbearable. I never have a minutes peace from it. There is not a point in any day where it isn't lurking in the back of mind even when I force myself to not go there.  It's a pain that is indescribable yet I feel called to describe it. I try to find hope when there ins't much. I try to believe it will be different for Robbie that they will find something and he will get a normal life. The darkest truth though is that I also have to accept my child's inevitable death from this disease.  I can't pretend it will all be ok because right now barring divine intervention it will not be okay.

I want to face this w/ a combination of grit and grace but there are times I have neither. There are moments it takes all I have to not dissolve into a sobbing, screaming, mess.  Every view I have ever had of everything is different now.  I am the mom of a handicapped child.  I am different from most people. Instead of watching my children grow stronger I will watch one of mine grow weaker.  

To be perfectly honest I am terrified of the future. I don't know how I will handle caring for him.  Am I really strong enough for this? Why didn't this happen to a boy w/ a more organized less scatterbrained mom?  Why are we so far from our family? There was a time I relished the freedom of being so far away. When we left I needed to take that step of independence now I wish I hadn't taken it. Wow that sounds pretty selfish.  I love my family I just have a very hard time saying no and moving afforded me the luxury of no. 

I feel guilty now because my little boy loves family so much and he has missed so many family things because of the choices Shelby and I made.  Then at the same time I absolutely love living where we are. I love my kids school and my kids pediatrician.  I like my low rent and barely there winters. My kids have friends and a life here but they miss their family and between school and rising fuel costs we can't bring them to visit their family as much as I'd like too.

On top of all that Shelby's job has become very unsecured at a time we need it to be secure. The added stress of this is just I mean it's incredibly unfair.  We have a job offer near my parents and money wise it works except they are barely going to help w/ moving and I just don't think we can make it work on our own dime.  How do we walk away from that though?  I hate making decisions out of fear. We had decided to really give ourselves time to adjust to this diagnosis before we made life changing decisions but now we are forced w/ a choice.

I don't know what to do. Nothing feels right. My gut is staying suspiciously silent. I just want one thing to be easy. Just one part of our life to feel normal.

Reality

We had hoped Disney would allow us to escape the reality of our life and this disease but unfortunately even amazing vacations include DMD.  I couldn't help but be jealous of other families.  How come the grumpy lady on the bus got 3 healthy kids and my son is sick?  I can't help feeling that way and there isn't an answer.


When we got this diagnosis Shelby and I said well we have 7 years before the wheelchair so we will live it up in those years.The problem is we get 7ish years of a slowly progressing disease. It isn't just that one day he wont be able to walk. The disease is already happening and as much as we want to pretend it isn't, in a place like Disney filled w/other 5 year old boys we can clearly see it is.

Robbie is sick all the time, everyday things are a struggle for him.  I nearly lost it a few times watching him struggle up stairs. Its the small simple things that break my heart.  Seeing a brother and sister in their teens going to Magic Kingdom at night by themselves and realizing Kelsey and Robbie will likely never have that. Watching a big brother helping the mom while holding on to the little sister and knowing Madi can already over power her big brother.  Seeing 8 and 9 year olds run on the pool deck. Watching Robbie's joy when I let him stand on the bus. the thing that is the hardest is seeing people that just don't seem to appreciate how lucky they are.  People wasting precious time on grumpiness when they have healthy wonderful children drives me crazy.

I cried when we left Disney. Knowing we were coming home to 3 appointments this week and a sleep study next week it just seems so overwhelming again.  I hate this disease. I hate what it is taking from my family.  I wish it wasn't part of us.

I had a great vacation but DMD was ever present. It cannot be escaped or forgotten  It is always our reality.

Break

We are leaving for Disney World Saturday morning.  I won't be posting anything until after we get back.  We all need this so much I am so glad Shelby and i decided to spend this money now. i am going to try my hardest to put DMD on the back burner.

The hardest thing about this disease right now is living in the moment while living in the shadow of tomorrow.  Every day is a struggle to keep my head in today. To not ache when he smiles but to savor it. I really have a hard time articulating this. It is so hard to put into words and so hard to understand if you haven't walked this walk.  It is very hard to feel anything else but sorrow yet we have to for him.

Disney World  is something all 5 of us love. I mean crazy Disney people love. Like if I would let him my husband would make us all matching shirts.  This year I think Disney is an escape. I think sometimes in life you have to just step away. We have been living DMD nonstop since December 15th. We are tired, wounded,and stressed out. So even though i don't like going when it's hot or crowded this year we are. We are going to relax, enjoy, and laugh.  DMD can wait a week.

Faith

I have always had a strong sense of faith.  No I don't go to church and well when it comes to the bible I know the basics. I know for some that's not enough but since it's my faith  and all  it works for me.  I have been so angry.  I still am, this anger is just probably part of me now. Iit was so easy to put the blame w/ God and sometimes I still do.  I have learned through talking w/ friends and family and even God how to believe again .

I have alway believed in a greater plan but in no way do I believe sick children are part of it.  I don't believe that I was blessed w/ this child just for him to suffer.  I can't put this on God because I don't think i could find it in me to faithfully follow a God that planned this for my son.  One of my very dear friends told me she doesn't believe God micromanages.  I don't think I could say it better.  Those words typed in a facebook message really gave me a chance to believe again.  Thank you so much Bethany for giving me back a little faith when I probably needed it the most.

I am a little stronger today even if the part of me that broke on December 15th never mends.  I know in my heart I have the strength and the compassion to handle this.  I feel that is God's plan that I was destined in some way to be there for a special needs person.  I was always pulled to do something maybe special education or something but I never figured out where I was going. Now I know. I don't think God planned on this happening to Robbie but I do believe he made me the kind of person that can be his advocate..

Advocating for your child is not for the weak at heart.  I have to go into every Dr appointment, every  IEP meeting, every aspect of his life ready to fight for him. I have to be the one to draw the line between DMD and childhood.  If his time is limited then it is up to me to make sure he isn't a science experiment that he is a boy not just the boy with DMD.

I have already changed some things.  He was receiving therapy outside of school every week and that just became too much for him.  I said we will do it every other week.  I didn't wait for a yes or no because it wasn't a question.   I decided that he can do his blood pressure checks at the pediatrician. This all sounds little but for me its a big step as I am not in any way described as assertive by well anyone.

This is a journey we can never be prepared for.  No one makes a baby with this as their plan and thankfully most parents will never face this battle.  It is really important to me that we remain normal.  That no matter what this disease takes from my family we stand strong together. I want my kids to have a childhood full of smiles and it is my job to make sure that is what they get.  I had such a happy blessed childhood and I want my kids to have that too.

Please don't let me mislead you I am still hurting and really I don't think there is going to ever come a time I won't.  Well once they discover a cure maybe but honestly I am different now.  I am equally more forgiving and less forgiving if that makes sense.  I have learned the power of the word no.  I have seen what happens when compassion is not offered and I have vowed to try hardest never to miss a chance to offer compassion.  I have always used the saying "Life is Short" now I understand the truth in those sentiments.  I don't break down  often.  That is so strange to me.  I thought if I was ever faced with something horrible I would be a mess but somehow I am not.

I guess the most important thing I have learned is to embrace whatever I am feeling.  Sometimes I am a bitch and that's okay because how could I not be angry sometimes?  If I feel sad I feel sad.  Sometimes at  Dr appointments I think they look at us funny if we aren't crying but we are like everyone else we have a family to raise and we can't lay in bed crying all day.  We do have times when we are like that but we have to be aware and remember what Drs say so we  listen intently and we cry about it later when the kids are sleeping and we can hold each other. They don't understand because most of them haven't been where we are.  Thank God they haven't because this is a place no one should ever be.

Better?

People think I am doing better. Truthfully I am just a lot better of an actress then anyone was previously aware of.  I am mostly a shell  of a person forcing myself through the days. I live in fear of missing something happy and amazing about my son, missing some memory I will need later.  How I hate later now.

In September Shelby and I made the decision to stay here and build a house. We talked to builders about these gorgeous 2 story houses w/ turning staircases and 5 bedrooms so we had a guest room.  Then December 15th 2011 changed every dream, every goal, everything.  I refuse to even look at houses now because that dream is dead to me.  That was the dream of a mom that thought she had forever.  A mom that thought she was one of the lucky ones.  One of the ones that got to have healthy kids.

It is so hard to articulate what this feels like, truly I don't think it's understandable.  There is this huge sense of loss , then guilt for wasting a minute of what time you have feeling sorry for the yourself. It is such a struggle all the appointments, the sense of hurry up and enjoy today and then hating yourself for having that thought, the IEP's the explaining what this all means to people.

He has been tardy 10 times since school started they tell me one more time and we have to have a meeting.  Seriously bring it on.  I mean we are dealing as best as we can. Sometimes Shelby and I, we miss the alarm because we were up late talking or crying . I want to know what the school would suggest?. How they think we should be handling this? Don't get me wrong I get they have jobs to do but you see right now I just don't care.   I think we are doing the best we can and that is all I have to offer anyone.  My child is sick and somethings suffer.

Shelby and I are hurting but we still have to be mom and dad.  He has to work and care about build processes and I have to fold clothes and wash dishes.  We are so bad at budgeting right now.  i mean how do you care about paying the garbage bill when your kid is sick?  I don't cook like I used to because I am always tired, always carrying this huge heavy grief is exhausting.

I want to say this because I think it is important I don't want to offend any one so if you think I am attacking you I am really not because unless you have been where I am right now it isn't understandable.. Please never stay quiet because you don't have the right words to say to someone in my situation.  Finding out your child is sick is instantly isolating.  It is scary and terrifying and thankfully unknown to most people.  The words people have said to me they give me strength they tell me I am not alone and that is a precious, priceless gift.

How are you?

seriously the worst question ever.  When someone asks me, I freeze.  I  am  okay  I mean i'm breathing, I remember to brush my hair, and no headache or colds or anything.  I'm not okay either, I am completely indescribably devastated.

We went to the MDA clinic yesterday.  I don't know why I am having a hard time explaining it.  I feel like a lot of people wanted it to be all better for us after we went there but that is diffidently not the feeling I have now.  I do feel a lot more supported and it was nice to have everyone be genuinely nice and understanding. I am not going to lie though it was hard to be there, really hard.

While we waited Robbie was playing xbox.  I looked up and a boy maybe 12 wheeled up to the game next to Robbie's and started playing.  I am pretty sure he had DMD but I cant say for sure.  I am warning you i am about to sound like a bad person here.  I was panicking, he had the same hair color as Robbie's and Robbie he kept looking at the chair.  I was trying so hard not look.  I was fighting my urge to cry so hard I have a sore on the inside of my lip.  I don't want my baby in that chair, I didn't want that boy in a chair.  I wanted to run away. Just grab Robbie and run. I have been very good at avoiding the realities of this disease. I have kept myself in the present forced myself to be hopeful. Suddenly  reality and the future were slapping me in the face.  I want to say I handled it well but that would be a lie. Then Robbie farted...

The boy looked up i said excuse you to Robbie and they giggled.  Two boys giggling, playing xbox. 2 beautiful sweet amazing boys laughing.  Life is being so cruel and unfair to them and they are giggling about farts.  It was a good lesson to me that while this is going a hard road for Robbie he will still be Robbie. I  will be able to handle this because well, I really have little choice.

Anyway today we went back to the neurologist where we were asked no less then 10 times how we were.  Honestly I have no clue how to answer that.  "Well my heart is broken, I am surviving on coffee and adrenaline, and I eat all the time." just didn't seem the answer they were looking for. my favorite is Are you handling it okay? I want to ask what is okay? Is there like a way to do it where you get a gold star?

Our life is just so different now. Our child is sick and we are powerless.  My husband is worried about his job, I need to have surgery, and we miss our parents.  I miss my brother. I am actually closer to my friends that are absolutely hands down the most amazing women.  I am raising money and desperately hoping for a change. In the midst of all that I am just simply hurting.  I never knew pain until now.  I don't know where I am getting the ability to still function and sometimes I feel guilty that I am.  How can spend time w/ my friends laughing, have sex with my husband, or plan a vacation, or enjoy a glass of wine while my kids play outside?  Joy feels wrong and necessary at the same time.

One thing I am really trying not to say or think is things like we better go on vacation before we can't anymore. Or talking about getting through this because this is Robbie's life, not some financial hardship or something. I refuse to "get through" my child's life. On my last post there was a comment and what she said about how this is still her child's childhood spoke so powerfully to me.  I will find joy in my soul for them.  I will smile even when it hurts.  I wont lie to them, we will face this honestly with humor and I hope grace. I honestly feel there are times in our lives when we are given the choice to merely survive or the choice to live and for my kids I choose living. i choose to tell them life is hard because it is,some times life is cruel, but that is what makes the good times so good.





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