Peace

Before i start this, i need to say how heartbroken i am by the events that transpired on December 14th.  Everytime i look at my children I feel so much sadness for the mothers that arent able to see and hold their children today.  This blog is not going to be my usual rant and rave session today...

I have spent the past 12 months pretty angry and sad.  I have mourned the life I wanted for my child and  also mourned him in a way.   i have thought of years ahead of now and trials my family may face.  i have shed so many tears over what may happen in the future.  It is hard not to imagine what the future holds even as the future for DMD patients is constantly changing and the statistics are slowly changing.  its a hard way to live a life.

For Robbie and my girls i need to start moving past this.  There is much i can't control in life but there is a lot i have the power to change.  I have decided to stop measuring myself by other mothers. Not everyone can run the charities and be the face of dmd families. maybe that isn't the path I go. maybe my contribution will be in fund raising and hugging.  The point is this happens to all sorts of people from all walks of life and we all will react and deal differently.

It simply comes down to i can live my life sad and angry or I can grab on to the hope and love in my life and carve out some happiness for my family.  The love I have for my kids isnt going to be any different if my kids are walking or in a wheelchair.  I need to stop fearing what might be and enjoy what is.

I don't think there will ever come a time i wont have a slightly heavier heart or won't wonder, why?  I have to be able to have those feelings and still be a functional person.  I could literally drown in sadness or I can choose to live w/ the sadness.  Not  in sadness but accept that i feel it but that it doesn't lessen the happiness and love I have in my heart too.

i think it is natural for me to question God, question by faith in a situation like this.  As i told Kelsey though I am sure there is a God and a heaven because i watched my Grandma pass and I knew instinctively it didn't end for her that day.  i know there is a god because i know the blessing of children. 

Last week started w/ Kelsey talking to Shelby and I about Robbie and her standing up to some kids giving him a hard time.  She wrote a speech for her class, checked out some books from the library, and most importantly she talked and she keeps talking.  There were hard questions and some tears but  I am so very proud of her. 

I want end as I stared today.  Kelsey asked me if I thought all those kids in Connecticut went to Heaven.  i told her I like to think that all the moms and dad and grandparents that are up there were waiting for them.  i told her my grandparents and Daddy's grandpa, and Danielle's  dad were all there and that all those children are feeling a lot of love.  I pray that all those families find some sort of peace and i cry w/ them.

A peak inside my head...

when my life became abnormal I became obsessed with normal. the thing is I am not sure normal is even attainable.  I know for a fact I will never be normal again. Of course that isn't all bad. It's just not what it was before DMD was a part of our lives.

guilt isn't something I really got before.  Some days the guilt threatens to completely take me over. I fight it  but it's hard.  I know I didn't do anything to cause this at least intentionally but I can't shake that this happened in my body. that my egg was damanged or  something funky happened when cells divided its was still in my body and that fact is always on my mind.  I know there is nothing i could have done different that it just happened but it happened in my body to my child. 

It really bothers me that I didn't know this could randomly happen to a family. I mean i am not carrier yet thats my kid w/ the exon 45 issue.  No one told me I had to fear this. Hell theres still no one telling moms this is on the scary list for everyone.  this drives me absolutly crazy the randomness, i was blindsided but then I am not sure it would have better another way. DMD is already taking things from me but at least I have all those years when he was just Robbie and I was mom w/ 3 healthy kids.

I have learned how ridiculous it is to try and cherish every moment of any thing. It isn't possibly when you bring a baby home and they puke all over you and it isn't possible when you are given horrific news.  I enjoy what I can, fake what I have to, and cut myself some slack when I need it.  This is an extraordinary situation and I am only human.

I always thought god wouldn't give  person more then they can handle. Now i am not so sure.   I am not sure I am handling any this correctly.  I certainly wish there was a guide book  or a diagram anything.   People all the time tell me how good I am doing. I guess because i am not on my knees railing at God but thats totally whats going on in my head.

Most people don't notice me freeze when I see a wheelchair or notice Shelby grab my hand when theres some dumb commercial about a kid getting cured of something that has a cure.   When Shelby talks about an RV he doesn't hear me struggling w/ whether or not we should do it since a few a years from now it might be too hard w/ a motorized wheelchair.

i try so so hard not to concentrate on the negative and trust me i have heard that advice enough for a lifetime.  i can't do it  though as much as I fight internally to stay positive I really just cant find peace.  

I fear seeing into the future, meeting families w/ boys that are further on their journey.  I know how horrible that sounds and it keeps me up at night.  I know for Robbie I need to get over my issues but I really just don't know how.  Again a guidebook would be fantastic.

My tree isn't up yet.I have a place to put my Grandma's Christmas village but it is still in a box in my garage.  I want to be into Christmas for the kids but wow its hard.  Last year at this time of year everything changed. i am angry with December, with my stupid body for not protecting him,  w/ God for not stopping it.  i want Christmas back but at the same time I want it in a box not reminding me of everything that happened last December.

I don't know how to do this and I hate myself for not instinctivly knowing what to do. i thought if something was ever wrong w/ my kid i would just swoop in and handle it. Be this super mom but I am more like a super emotional shell of a person.  I read all the time these woman who weren't going to give  up that found this strength and did amazing things. What is damanged in me that i am not there? What if i never get there?

I have always hated i when people call children that are different 'special. it always seemed like a condescending thing to me but it's true.  Robbie might have DMD but he is stronger and wiser then I will ever be. not being normal isn't an issue for him it's just his life.  I know whether or not i get it together. Cure or no cure this child will have the most beautiful life he can have. i guess my greatest fear is that he will look back and remember the mom I was before we found out  and be disappointed in the mom i became in the aftermath.  truthfully i guess we all stress about screwing up i just feel like  I have less time to make it right.

awarness

Do you remember after school specials or the this is your brain on drugs commercials?   I'm sure if you were born at some point in the 70's or 80's you know what I am talking about.  they were silly we still make fun of them but they were effective.  Not because they were groundbreaking but because they opened up dialogue.  They put a human spin on very real but pushed under the rug issues.

Same with HIV and AIDS. Molly Ringwald did a TV movie, Tom Hanks did Philadelphia, and Stone died on General Hospital.  Actors wore red ribbons  and the world changed because of awareness.  I know this disease doesnt have a cure yet but people are living long, full lives because people talked about it, people demanded research, and progress was made.

I was almost 4 years old when my Grandpa passed away.  He had cancer. when I was 4 there wasn't a lot to do. There wasn't early detection like there is now and my Grandpa had no chance.  That isnt the case anymore. Don't misunderstand I know people don't always survive, I know the treatments are terrible but I also know that innovation is happening all the time. I know that I buy pink m&m's. I put money in the cancer research boxes and there are break throughs. I know survivors.

This is all i want.  i want my son to have a chance no matter how slim.  i want ribbons and stand up to Duchenne primetime TV specials.   Why is it that a lot of trained Drs and nurses do not know the difference between MD and MS? Why is the MDA telethon regulated to a few hours on labor day weekend on 1 network.  Ask yourself how this disease can afflict 1 in 3600 boys and you didnt know a thing about it until my story.  I dont mean that bad i was pretty clueless myself.

My child is battling this disease w/o a tool.  There is research that looks promising. This is my child that is not enough. I am asking you today to help me. To raise your voice to demand answers.  Talk to someone about this disease.  Tell them about my child and how his future  is threatened.  Awareness leads to money and research. 

i am not asking anyone for money i just want people to talk about this.  Children cannot advocate for themselves. They can't donate money, and they are defenseless.  Don't talk about this because of me or my family, talk about it so this isn't your story or your grandchilds story.  This doesn't just happen to other people this  happens to anyone.

To my son

You turned 6 today.  I can't beleive it has been 6 years since came into this world impatient and using your words "Ready to meet me."  If you ever see this blog I am sure you will see my posts about my broken heart and how angry or sad i am.  I want you to know that it never comes from a place of regret,

Even if I had found out in the beginning that you would have ths disease nothing and  I mean nothing would have made me not want to meet you.  I have hope, Robbie, that there are real breakthroughs on the horizon. 

You have things harder then me but you never complain. You might have to do something a little differently but that never stops you from accomplishing a task. You don't yet know what an awesome trait that is.  You don't realize how far you will go in life because of it. 

You have in many ways united mine and daddy's family into our family.  What a gift that is for all of us.  I never had that growing up and it was something I desperatly  wanted for you and your sisters.  Now when our house is full w/ our family it brings me so much joy. This is something you and i share this need for family around us.  You will see as the years go by what a gift is to be surrounded by people who love you and will catch you when you fall.

Your road might be hard and as much as i want it to be different i can't change this.  I can do everything in my power to give you the tools to be independent.  I will never give up on you.  I really don't know why this is happening to you. People tell me there is a plan but I don't know how much stock I put in that.  i do know there is a God. i just don't know if he really plans things like this.

It's very important to me that you find your own faith and your own way to beleive.  We all get there differently.  I really don't have all the answers and I want you to know a secret...No one has all the answers.  People who claim they do really don't have a place n your life.Life is such a complicated funny thing I just don't think the answers are simple but who knows maybe you will think they are and thats fine too. 
Your values, the things that you choose to put out in the world that is what is important.   There is strength in empathy. Have the courage to stick by your values.  trust yourself and your instincts and you will be okay. Robbie never let this disease define who you are.  You are so much more then DMD.

You are my son, the little boy that loves cowboys and his family.  The child that kisses my head when I have a headache, and questions everything. Happy 6th Birthday Robbie!

Blessings

We have officially known that Robbie is suffering from Duchenne Muscular dystrophy for 10 months. i can't believe we have made it this far, i really didn't think i could live through the news. I thought for sure my heart was to broken the world would end and that would be that.

I have decided to give my self a little lightness as we head into the holiday that will forever be bittersweet for me. The next to months I am going to focus on the happy. I am going to try and post everyday about the blessings in my life. Don't worry  will still share angst when I have it but I think surviving the holidays and stuff is going to take some work for me and my kids are used to me making it special so I am going to do that.

In times of sadness there is almost always someone that takes your hand and pulls you through. so many people have done that for my family it's hard for me to start but i think I have to start at the beginning.

On December 13th 2011, we got a call that was going to break the hearts of a lot of people. We needed a family member and we needed them quick. right away all of our parents starting trying to get to us. it didn't matter how much it cost someone was going to get here. In the end it was my mom that came and 3 parents that had to stay behind. I can't imagine what it was like for the 4 of them.

I mean your kids call and you know their lives are about to be destroyed and you can't fix it. Okay i guess i can imagine that but  it had to be hard. 

When the news came we were all hoping wouldn't come we were lucky enough to spend 2 weeks w/our families. Instantly they  stepped up. Nothing that happened before then mattered anymore. I let go of some grudges well really we all did.

we went so long being alone, and we were pretty good at it, but we couldn't do it anymore. So our family fed us, they cried w/ us, they made us laugh. Some of them bought extravagant gifts,some said come to my house and wrap presents, some were just there. We are loved.

if there is a good thing to take from all this its that it opened me up to give love in places i maybe should have years ago. I am so lucky to have love to be able to love. i feel like my family hasn't grown but it's so much bigger. 

So today I am blessed to be part of the Jones/McGregor/Bates family. I love you all and I hope that everyday you know how much comfort your support gives us. How the days when it gets too much we know you are there. I know all of you are hurt and devastated like we are but you manage to be so strong for us.  i just want to say...
Thank you!

The day she couldn't think of a title

I used agonize over whether or not I should feed my kids organic food.  Stress about whether or not to let them watch TV.  I used to compare my parenting to everyone else.  I would live for the day they were tall enough to ride a roller coaster and I used to dream about a house full of kids, spouses, and grand kids. That is all trivial crap i don't get to worry about anymore.

I understand other people still get to worry about those things and trust me I am so happy for them. having a sick child is much more then you think before you find out. Yes, it is emotionally devastating like we all suspect when it isn't our child. No one tells you how hard it is to force yourself to get through each day. How overcome w/ guilt you can become even though you didn't do this. the physical and mental stress of specialist after specialist. How emotionally devastating it is to sit through IEP.  The insensitive crap people say to you that you have to be gracious about.

Please know if your biggest issue is the height of your child, high fructose corn syrup, or recurring runny noses, I don't think you wrong to worry about those things. As parents we are charged w/ raising the next generation and none of us wants to get it wrong.  I am jealous of you and I really can't apologize for it anymore then you can apologize for having a healthy family.

My prospective is screwed up but that's because something really screwed up is happening to me.  Every day I wake up to this grumpy little boy(not a morning person) w/ the best hugs and i look at his legs hoping his calve muscle have miraculously shrunken.  I hope and pray for a cure and I force myself to be the best damn parent I can be.  it is not easy and when I see someone lamenting about something trivial and every once in a while it  hits a nerve,

i am not trying to play a game of my life sucks more because obviously there are varying degrees of awfulness everywhere.  One persons bad day is anothers good day. My life is hard and it is scary right now. I know their are people in my life that are here for us but it is still so hard to be us right now. I feel like so many people feel a need to lecture me, think positive, gods plan, whatever else I am not getting. it's not helpful, in fact it hurts me.

I am trying so hard to find grace. to be a fighter and strong but I fail sometimes. i get angry, I get sad, and sometimes I want to run away, but I wake every day and I keep trudging through.  I don't need people to judge me, I don't people to make this better for me, or people to try to make it understandable for me.  All i can ask is that people understand that when i am being a bitch I have things weighing on that you maybe can't understand so just be grateful for that.

Cheese

He sat at the table for 10 minute shredding half a block of cheese.  I sat right next to him. He never asked me to step in he just kept going.  i could tell he was struggling and I wanted so bad to take over but he wasn't going to give up so I couldn't either.

When I think about this disease I worry about the future, the scary thing that will happen to my child. It's natural I mean this disease is cruel and it's enough to make me question everything I have ever known.  Robbie deals w/ this disease on a much more personal level every day.

Every night when we go to bed that little boy has worked harder then anyone else in our family. he doesn't stop, he never complains, he just carries on. Truthfully Robbie has been dealing w/ this a lot longer then I have.  Its incredible to me that the little boy that had to have his head glued together after he climbed our entertainment center was afflicted w/ DMD.  He walked ll through Disney(this was before we knew) never once complaining even though we kept saying he was pokey.

He is brave in a way that has to be respected.  He is stubborn and proud. He loves unconditionally.  If you are one of Robbie's family , you are loved its that simple. 

He was so proud when he was finished grating his cheeses for dinner.   It's hard to explain how much he struggled w/ it. he worked hard but he was determined in a way i wish I could be when challenges present themselves.  Is it strange to get inspired by cheese grating?  i don't know it probably is but i have to find a match in the dark, you know?

I have to remember the night he he grated half a block of mozzarella and didn't stop until it was done no matter how hard it got.  i have to remember that no matter how hard this for me it is harder for him.  That there will be days I want to jump in and make it better but I simply cannot do that all the time.

Robbie's life may end tragically but his life is not going to be tragic.  His life is going to full and beautiful, brave and strong, and loving. I might get to see this disease cured or lessened and I might not but I have to, we all have to remember that he is a fighter.

This Weekend.

It doesn't matter what this disease takes from our family because we will always have the little things.  there will always be a hug, a laugh to share, a good meal.  It is so easy to get wrapped up in the unfairness of this disease.  To feel only pain but life just isn't that way.  We have to live even when sometimes it hurts to do so.

It is a constant struggle finding peace and happiness in the face of the hell our life has become.  It is also a gift, allowing us to see the beauty of the little things.  You can't take a walk through the mall for granted when at some point your child may struggle to do so.  A hug because you say, yes to going to gamestop is a lot more meaningful then it was before. 

Saturday we made homemade waffles, saw a movie, hit the mall to spend Kelsey's birthday money, ran by parents, watched the Tigers and the Reds win their games,  and spent Sunday in our Pj's eating nachos and watching more baseball.  it was simple but it was amazing. We laughed and screamed, hugged and kissed, and we were just us. We weren't 5 people living through devastation but a family, a happy family.  For a brief second i forgot I was angry and said thank you, God, thank you for this amazing family.

DMD isn't stronger then the love this family has.  We wont let this take us down.  No matter what the future holds we will have weekends like this. we will laugh even when it hurts.  We will hope and we will pray that this is moment a cure is found, that this is the generation of survivors.  We will hold on to this boy and be his strength when he needs us to be and we will let him fight his battles when he needs too.  we won't let him give up, we we help him find his happy  and  musuclar dystrophy will not define us or him.

What can't be changed still hurts

he's loves me even though I am flawed. I am Mommy even though i can't make this hurt go away.  I am tormented w/ thoughts of a future w/o his hugs, a world still spinning w/o him in it.  If that days comes I don't know if I will be able to keep breathing if i will have it in me to say goodbye to a child.

I try to accept what i can't change. i try to find comfort in the little things but its never enough. there is a part of me that froze on December 15th and I don't know if that will ever thaw.the world looks different to me. colder, more harsh, I find myself craving winter when the world will look bleak and I will feel the same.

My child is sick in his DNA. there is nothing i can do to change that, its part of him like my eyes and his fathers need to know how things work. i cannot have my child w/o this disease. I would never choose not having him although I feel so guilty that by having him he is sentenced to this disease. i wonder all the time would I have attempted having children if I had known this would happen?

Honestly, i don't know.   I can't imagine not being the person to raise these little people but I hate that their world will be colored by this disease.  i have faith in my children. the three of them have a bond I envy i was close to my brother growing up but theirs is stronger different.  I see Kelsey as Robbie's constant support and Madison pushes and challenges him but she will take anyone out if they give him a hard time.

Robbie will be stronger then I can even imagine. he is not going to lay down he will fight and he probably give us the strength to fight w/ him.

My every view of the world has changed.  Some days i don't even know what is that i think.  I don't know how to care about an election, or a policy. I just want my kid better.  i want to vote for the person that will make this go away. i know it's selfish and I know that i don't care that it is.  I know i should be fighting harder, raising more money, but I also know i am a mess  right now and i can't do that until i am more together. 

The world wants me to cherish every moment I have w/ him but that's bull shit. it is simply not possible to cherish heel chord stretches or steroid swallows.  You only say it to someone that is eventually going to lose something. Like  if I cherish every moment it will somehow make it less tragic.  Now I am not saying i don't file away every single happy moment and hold on to it knowing someday it might be all I have. can you imagine knowing that unless something changes all you would have from your childs life are memories? would you be able to dig deep and enjoy every moment knowing they will end in a horrible fashion?

I'll admit maybe I need some faith but i prayed so hard and i am so angry that this prayer wasn't answered how I wanted it to be.   I know god has a plan and all that crap so he gets to do this to my son and I am supposed to bend to his will but i can't.  i wonder if God in enjoys doing this to people or is he is hurting w/ me or am i a barbie doll  and all his decisions have been made and he sits back watches.

Wow i feel like this all over the place today. I have been all over the place this week. DMD is starting to make is presence known in life our again. appointments, IEP's, i wish I could explain the stress of all of it but its hard to explain.  it makes me crave normal whatever that is. it makes me jealous of  other people, it makes me cling to food, to watch baseball games that don't matter 3 times in a 24 hour period, I am desperate to just be like everyone else.  for Robbie to just be a little boy.

100 things that make me...Me.

I have decided to lighten things up and have a little fun today. here's 100 things about me:
1. Every song that I have ever sung a long to is my favorite.
2. You Oughta Know is my favorite thing ever. I love any chance to scream the F word in my angry chick voice.
3. I don'tlike cats. i am allergic which helps but I don't know they always seem snobby to me, like they are judging me. could be my issue not theirs.
4. I still get giddy when i know my husband is on the way home from work.
5. I wanted 5 kids, Shelby wanted 2, we compromised on 3. 
6. I love soap operas and I hate when people get all judgy about it.
7. i have watched General hospital since i was 13.
8. I hold grudges.
9. when I am nervous in a social situations the stupidest things come out of my mouth.
10. i love American History. i love shelby because he does too.
11. i love to have the last word unfortunately I am not good at the last word and usually would have won the argument if I had stopped a moment sooner.
12. i have never had enough alcohol to be truly drunk.
13. i can't dance, not even a little
14.  My single greatest sports accomplishment was making a touchdown in flag football in 8th grade, it was a quarterback sneak and my Gym teacher was so shocked an amazed that I walked around the rest of the day in grass stained pants.
15. I suffered a badminton injury in 9th grade. My parents used to explain my B in gym.  i was proud of the B.
16. I used to write all the time but i quit for years until i started this blog.
17. My mom makes the best chocolate cake
18. I have a really good memory. Like very good.
19. I once walked into the hallway when some idiots were breaking into our house.  i didn't tell my parents for a long time cause i thought it was a dream.
20. I love fishing w/ my dad.
21. i hate peanut butter and jelly sandwiches, american cheese, and ground beef (unless its a burger).
22.When i was 17 i got Mono, and it came w/ a severe case of depression.  My boyfriend did not contract it but my best guy friend did but there was no funky business.
23. i hate to make phone calls to make appointments, or order piza, or anything I get nervous and stupid on the phone.
24. I am pretty liberal and my hubby is pretty conservative.  Election time is kind of tense in our house.
25. I miss the old Tiger stadium.
26.  i love to watch burn notice. things blow up and the good guys almost always win.
27. i think its sexy when my husband tends to a fire.
28. i love my husbands t-shirts
29. I married Shelby and i was 21, my mom married my Dad at 21, My MIL married my FIL when she was 21. 
30. I love being in Michigan but I miss Georgia. especially my friends.
31.  I like to be right,i am bitchy when i am not
32. I love Dog the Bounty Hunter.
33. people are often silent when you announce your 3rd pregnancy.  okay that wasn't so much about me but I am just typing what pops into my head.
34. I love, love,love Grocery shopping and often have trouble sleeping prior to a Costco trip because I am so excited.
35. I usually can't sleep the day before I travel
36. I have wide feet it blows.
37. I am sort of angry w/ God and it bugs me.
38. I am a mom of a special needs child.
39. I have a genetic eye disease no one in family history has, my son has a genetic disease no one in his direct family history has
40. I have been changing diapers for 9 years, madison is almost out of them. i will cry happy tears once i can say she is potty trained.
41. I love to watch gone w/ the Wind, but i Rhett to come back.
42. follow up i actually watched on TV and rented the entire Scarlett movie sequelthing.  i didn't really like it but I wanted a hppy ending.
43. My favorite movie ever is American President w/ Micheal Douglas and Annette Bening.
44.i don't remember what happened in Goonies
45. I listen to country music. shelby said I would never get him to listen to it. he listens to country music a lot. He kind of likes it.
46. I think being a flower girl 3 times somehow cause a karma malfunction making it impossible for my girls to be flower girls.
47.I hate going to bed at night and hate getting up in the morning.
48. I consider my mom my best friend.
49. sometimes I hear the words that come out of mymouth and realize I am very much my fathers child.
50. I love to read.  I am really bad remembering to bring library books back. Its cheaper for me to have a kindle then pay late fees.
51. i wanted to be a special Ed teacher when i was younger but realized i would get to emotionally involved.
52. My child is special needs and I think that is how I will serve the special needs community. Not sure if that makes sense
 53. I really like pizza.
54. I have gained a ton of weight in the last year cementing my hypothesis that I might be a stress eater.
55. My husband is a  "Senior software engineer" because of this once in a while i can explain the build process.
56. i hate how almost every disney channel show has a girl that is not into school. especially the show w/ the dyslexic dancer they constantly protray her as stupid.
57. I facebook spy.
58. i like sex. TMI sorry running out of things about me. !00 is starting to feel overzealous.
59. I love trivia games. Especially ones I win
60. i like to win
61. monopoly bores me
62. I don't have even a little crafting ability. 
63. My kids prefer to not have cake on their birthdays
64. I only had a real relationship w/ one of Grandparents. In all fairness my Grandpa Guenther passed when i was 3.
65. Somewhere in the world I have an uncle no one in my family has ever met.
66.  I had great parents. a pretty idyllic childhood.
67. I went from my parents house to my husbands house which wasn't my life plan but the life turned out better then the plan.
68.  i love Little Women.
69. i don't like the Dallas Cowboys because a jerky guy in my 6th grade class wore a cowboy's jacket.
70. At 15 I had a huge crush on Dennis Rodman. it was the beginning of my bad boy phase.
71. When I was 11 my dad bought me a New Kids on the Block poster. they were kind of not cool anymore but he was so excited about it so I left it on my wall for 3 years.
72. I get jealous when woman call my husband Honey.
73. i cry, a lot, when i am angry, sad, happy, its what i do.
74. sometimes I laugh whens its really inappropriate and I can't stop. robbie's does it to.
75. i was in the room when my grandma passed.
76. My husband apologized after he said he loved me the first time.
77. I have been to Disney World 7 times
78. My favorite meal is shake and bake pork chops and baked potatoes w/ appple sauce.
79. because we are a family from 2 different places we eat coneys Detroit style and Cincinnati style.
80. I love to have breakfast at little greek coney islands
81. i always rinse my dishes before they go into the dishwsher. i feel guilty if I dont. I blame my grandmother.
82. I have the Grease singing and Dancing game for our Xbox. contrary to what I thought I am no Olivia Newton John
83. I hate when people tell me God has a plan/ Although I am pretty sure I have covered that here.
84. i was a bad bank teller but an excellent cashier. i can't figure out why.
85. I love being married.
86.  i don't mind playing Barbies w/ Madison.
87.i can't drive right now because of my eyes and it makes me feel completly useless.
88. i don't like volunteering at my kids school. I know its important to be involved in their educationso i am but not other kids. yes maybe that is awful but it's truthful
89. My dad and I stayed up really late to beat Mario 3 once.
90. I liked baywatch when it was on.
91. i remember every second of my first roller coaster ride at Cedar Point.
92. My husband makes really great bread. i buy really great bread.
93. I love being able to see both sides of our family w/ some frequency,
94. i almost beat up the bus driver today cause i heard yelling for kids to hurry up and I thought he was yelling at Robbie.
95. I relate to taylor Swifts fifteen. its great song and I have totallly been there.
96. i had a magical kiss in the snow when i was 15.  the boy was all wrong but it is a perfect little memory.
97. i never thought i would live far from my parents. I was gone for 7 years but i feel so glad to be back.
98. My brother once caught my head while fishing.
99. I met my husband online but I hate saying that because it was such small amount of time and most of the relationship stull happened after we met in person.
100. Being a mom was my life goal. being the mom of these 3 awesome kids is beyond anything i could find the words to explain.
No way am I editing this. Sorry wanted to post something light today.

Empty

Nothing looks the same to me anymore.  I try find to peace,faith, something to hold onto but I am empty.   I try to care about eating healthy or having a healthy budget but all i can think is that my child is suffering and i cant save him.

I can pretend so well that i am fine. Its almost a game this mask I wear.  I seem strong, maybe somewhat capable but I am a mess.  it's like I'm  numb or cynical but I feel like nothing will ever be good again. I am still so confused that this happening. How can it just happen?  This makes no sense to me. How can their be perfectly healthy murderers and sick children in the same world?

I feel like we are being punished for some reason. Nothing works out anymore.  I don't even remember what it was like to be normal, to have faith in a future.  i was always so certain in my faith, my believe in an afterlife.  Now I just can't find a way to believe in a higher power. Okay i guess i believe in a higher power i just don't know how to faith in something that could allow this to happen to my kid.   I keep reading that God's plan is perfect but honestly I can't say i get that.  In no way can I believe there is some perfect reason for this. I just can't.

Every milestone we pass now is like being punched in the gut.  stating a new school year means we are 1 year older, 1 step  closer to the inevitable. I wish I didn't feel this way that I could find a way to be happy and content but maybe i am just not built that way.  

I feel like a shell of my former self.  some days I look in the mirror and the person looking back at me is so tired, not young or carefree but weighted down and filled w/ venom and sadness.  Sometimes when moments of happiness strike it actually hurts.  it hurts to go through life knowing what I know. I want to give up but i can't because he needs me.

For Robbie, I find a way to fake it when I have to.  i fight the battles I have too and keep my broken heart to myself.  i talk to his doctors and his teachers and i find a way to keep togethe because I have too.  Only here and w/ my mom or shelby do I let my guard down.  Only to shelby do I share the dark thoughts the ugly kind the kind that I hate myself for having but can't escape.

I carry on because I have to but i yearn to be normal, to not have an iEP, to have faith, to look forward to tomorrow.

have you ever started a sentence with:"If it was my kid..." I know have and then one day it was my kid. My kid that was sick my kid the insurance companies would prefer not to cover. You cannot possibly know how you will handle this kind of thing until it is your kid.

I always knew finding out your child had a fatal disease would be devastating but it's so much more then that.  the multiple hours every single day that I have to pretend I am fine weigh on me.  When Robbie is running around playing w/ other kids, I am a nervous wreck. so afraid he will get hurt.   every time he tells me what he wants to do when he grows up my heart stops for a milasecond before I smile and nod my head. I have to keep hoping there really is a future because well the alternative is incomprehensible.

Everyday when I wake up, it hits me again. I have to fight through this feeling of overwhelming sadness and stand up.  I have to go and be mommy and put a positive spin on things like medicine and heel cord stretches.  For the record positive spin on heel cord stretches is pretty  impossible but I try.  I think the real battle in all this inst the fight for a cure because all i can do is  raise money and raise awareness. the real fight is finding a way to smile, to keep my family going, my marriage strong, just keeping the normal in the face of the extraordinary.

i don't always win every battle.  There are days that living w/ muscular dystrophy just hurts.  Days where I can't find comfort in research and hope. days I cry at a drop of a hat. Some times Robbie will be walking and he will just fall. Shelby and I we know when that happens, why it's happening. Our eyes will lock and we look away before the tears come.

Yesterday I stupidly read a yahoo story about a family w/ 2 boy and clinical trials, it wasn't so much the article as it was the comments that bothered me. every time I read "If it was my kid..." i wanted to explode.  Its so easy to speculate what you would do when there is no reality to it.  Honestly, it is my kid and i know don't what to do most days. what battles to fight, which clinical trials to investigate, what misbehavior is from the steroids,  the answers that seem so simple and easy before are just damn hard now.

We never hear the inside story. We always hear about strong moms that fought for their kids education or conquered this law, or whatever but that cant just be what happened after they got their horrible news.  It's hard for me to read things like that, it makes me like I am somehow failing or not strong enough. it gives me a goal.  I want my ugly, scary, angry thoughts out there.  i want other moms to know that i m fighting but I am hurting too.  that sometimes I wake up and I can't force it down and I am hurt. that it is okay for me to be mad and sad and not be able to be wonder woman. Not sure if I am making sense at all today.

Feeling sad...

I thought I would feel stronger by now. I am not stronger.  I have been trying to pretend that I am, to put up a facade. i got it in my head that I wasn't allowed to feel sad anymore.  that i had to be fund raising and helping charities and if I took time to just let myself be sad I would be letting everyone and mostly Robbie down.

I just cannot keep it up anymore.  I am hurting.  I don't know how to fight  this disease because I am still so so angry.  I was afraid I couldn't blog about this anymore that it wasn't fair to anyone that was reading if I said I wasn't feeling any better.  It's not fair to me though if I hold everything in. i cant force myself to be less devastated so that it doesn't make other people uncomfortable. 

Honestly no one around me outside of Shelby can possibly understand what i am feeling.   I am stuck in that day in December. when i close my eyes I hear the doctor telling us.   I don't understand how this can just be randomly happening.  I feel so guilty. I managed to grow both my girls in my belly and they are perfectly healthy, why not Robbie?

i try to take comfort in the research but it's not happening fast enough.  why can't someone just find a way to make this disease go away?

I feel so guilty when I read about other mom's starting charities and fighting when all I want to do is curl up in a ball and cry my eyes out.  I guess grief isn't a paint by number thing.  I can't force myself to be doing better just so I can start fighting.  I have to work through all this on my schedule, my way.  Some days i just can't be strong, I can't pretend every things fine when honestly, I can't say it will ever be fine again.

Sad...

A boy passed away.I don't know him. I don't know his family. I know his disease. I am sitting here on a Tuesday in the middle of the afternoon sobbing.  Sobbing for  a 20 year old taken from his family by a disease in my sons dna. We tell ourselves all the time that it can be different for Robbie. There is progress and research and they are closer then ever but the truth is we are just the newest generation of families fighting this disease and chances are the ones before us chanted that mantra too.

I am not trying to be negative. I'm really not.  I live my entire life looking for a bright side, hoping for a cure, and trying to accept the long, slow break down of my sons muscles. It is for sure a strange way to live life.  Learning to accept the unacceptable while praying and hoping for a miracle. At this stage in the game it is in mine and Robbie's best interest to remain strictly in the present.

It's strange to live like this. I almost never say "When you grow up..." because I am afraid to promise that will happen. I was so emotional yesterday I couldn't finish this post.  Muscular Dystrophy had taken a back seat for a few weeks, finding a home and getting settled had to come first but reading about the death of this boy it just hit me all over again. I read when  Robbie was diagnosed that we should take life 5 years at a time. Its good advice just completely impractical.

5 years from now we may need a  handicap accessible house.  I can't pretend that isn't something we need to prepare for.  The future is a looming black cloud in our lives.  We fight daily to ignore it but it is always there. I said before duchennes is the 6th family member we never planned on.  I see it every day.  I see Robbie slowly conquering the stairs while both his sisters blow past him.  I see the aggression from the steroids and it breaks my heart.  Its not fair.  I still carry so much anger.

I hate that this is happening, I keep trying to find a way to accept it but I just can't.  It's like I woke up one day and everything I had ever believed or thought was different.  I am living my worst nightmare.  some days I am strong and focused.  I read the medical research, I find hope in the breakthroughs, and I can tell my family this could be it we might be the generation to end this disease. Other days I can't stop crying.  Those days are the hardest.  I hate myself for being weak like that because I could miss something some happy thing I will need later.

Later is my enemy right now. Every milestone my children pass now is bittersweet.  Every birthday brings us closer to later.  I am constantly torn between wanting to hurry up and experience everything we can in life before its later and stopping to smell the roses and enjoying the simple things.

I hope the research and breakthroughs that are happening now continue.  That my son will some day get the chance to truly run.  That he will not lose his ability to ride his bike but gain the ability to ride it faster. While later is my enemy hope is my light.

Coming Home

7 years ago we packed up off to start over to see life outside of our safety net. I can honestly say it has been the best and the worst 7 years of my life. I gained a new perspective on life, grew up, built an incredibly strong marriage, went from a mom of one to a mom of 3. Now we are on our way home.

Shelby was laid off about 10 days ago. He is lucky and had another job offer that is taking us back home, it isn't the way we wanted this to happen it isn't all on our terms and it really just feels so unbelievably unfair.  i am so happy to take a more active roll in our family again. I am sad to leave the people that have made this place home for us too. During these last 6 months so many people came through for me, gave me strength when i needed it , hurt for my son with me, and walked with me.

I could name everyone but you know who you are and I hope and pray you know what you mean to me. I don't know if I m the same kind person you have been  to me but I hope someday I have the opportunity to do what you have all done for me for someone else. i feel like this doesn't get expressed well enough here but 1 January night when I was living through a personal hell a group of woman gave me hope. There is not enough words of gratitude to convey the depth of my feelings I honestly believe the world is a better happier place because you are in it.  I will miss you so much.

I want to be clear here, I don't believe we are returning home defeated. Life seems to be throwing the worst at us and miraculously we are still standing. I mean I do wonder when enough will be enough but I have to look at the light because frankly my life has too much darkness. Honestly  I try to put the whole job loss thing into perspective it really was hard for Shelby but we are together, we aren't going to struggle to feed our family, and we won't lose the medical insurance that is so important for our little boy right now. Don't get me wrong this does suck and I am not zen about it all the time.

I have gotten past a lot of my anger though I don't think I would say I have made it to acceptance. I see this smart, curious, loving, active child, and I can almost convince myself that DMD isn't really there, that this was all a nightmare.  That is the worst the moments I forget and then he trips over his feet or something and my heart breaks all over again.  Then to add the stress of relocating and making money last the way it needs too and getting in to see all his doctors, and heel cord stretches, sleep apnea, and well I am human it  all pretty much makes me a little crazy.

So we go home. It is stressful and it is way more work then it should be (turns out we might have been hoarding a little) but it is still home.

New Normal

My normal is not what I planned on it being.   Its not all bad and it's certainly not all good.   I am learning a lot about life that I have been mostly sheltered from.  I don't think you can fully see and understand the healthcare debate until you are in a situation like this.  I am seeing a lot of my views of the world evolving and changing.  I question more and I call bull shit a lot more. I see the way we judge each other and I try really hard not to jump to conclusions because truth is i can't always see what is going on in someone else life. I am just not the same person I was December 14th 2011.

Now I have to force myself to see the blessings in the midst of such soul crushing pain.  I greive for what might have been while finding a way to enjoy what is.  Duchenne can not be everything.  It doesn't get that.  It is already taking too much. While many days I want to i cannot dwell in my personal hell.  I have to carry on.

Robbie has DMD but DMD does not have Robbie.  We can't ignore what is happening in his body.  I wish I could pretend it wasn't happening and go about collecting the memories of happier times i will need later but life doesn't work that way.  This isn't a matter of thinking positive but thinking w/ love.  Wow that sounded corny.   What I mean is accepting this disease does not mean that we are giving up.  it means we know we have to live w this disease but not for it.  As I commit myself to doing my part in the fight I also commit to just loving my little boy.

If Duchenne is going to shorten his life then I am going to do everything I can to fill it w/ love and laughter.  i am not saying that everyone in this house is not going to have dark days.  That we won't collectively and individually rail at the fates.  I am saying the anger the pain is just a slice of the pie.  That for every day we think we can't get through there is a Disney vacation, or homemade cookies, or laughter.

So we slowly adjust to this normal.  We have gone from surviving to slowly living again.  I pray that this new normal includes changes in treatment and cures. that some day my new normal will be just normal.

Silent Struggle

There are things i cant say out loud.  Places I can't allow my  brain to go.  There is a  piece missing from my life something I will never have again.  I have been saying I am so much stronger but really I just force myself to pretend I am. Maybe that is strength but I suspect in these situations we do what we have to survive. 

I have been struggling since vacation to get back into the swing of  doctor visits and therapies.  It all takes a toll on our family.  This constant obligation to this disease. As much as we try to act normal we aren't and muscular dystrophy never lets us forget.  Its the 6th family member we didn't ask for.    I am so sad for my little boy for all 3 of my kids.  i cannot explain how much I wish I could shield all of them from this disease. How much I want to shield myself, everyone that loves and cares for us really.

I never realized how much I would wish for autism or downs syndrome or something that would just make him different not something that would slowly rob me of my child.  I get so filled w/ desire to fight this disease but I have no weapon.  I have no miracle drug, no chemo, no anything. Hope, awareness, and fund raising they just aren't enough some days.  I don't mean to say these other disease diagnosis are any less devastating but please don't judge me if you haven't been here just feel damn lucky you aren't.

i am so jealous of my friends even my own mom.  I love all of them but i am different from them.  I don't want them to have to feel what I feel but my God do I wish I could feel the sympathy they feel for me rather then this raw horrible pain that will forever be a part of me.  

I have never felt such an outpouring of love before yet I feel so alone and isolated.  I am so scared to reach out to anyone dealing w/ this because I can't face what this disease will mean for me and my family in the future.  It is so hard to constantly grab at hope but force yourself not to be to hopeful.  I cant  fully believe there is a cure out there because what if they don't find one? 

My child is losing so much.  Its not just his ability to walk, or his eventual loss of life.  It is the simple things he doesn't get to have.  He cant keep up w/ his friends even now.  He will never be the first choice in gym class. He could forget what it was like to walk or spend his adulthood haunted by the years he walked.  I hate this.

I hate hearing about God knowing best and his almighty freaking plan.   seriously I don't give a rats ass what his plan is, I just want my child healthy and I am not willing to sacrifice this because of some plan. My husband and I made this child. We decided everything for him, God doesn't get to slowly kill him to satisfy a plan. I am sorry I just don't get why this plan should comfort me.If this is a plan I refuse to take comfort in that.

Tomorrow I will wake up living this silent struggle.  I will pick out clothes and tell Robbie to quit fooling around because the bus will be here any second.  I will do some laundry. Go to the ophthalmologist to make sure my 5 year old isn't developing cataracts from the steroids.  make lunch and dinner, curl up and watch TV and force myself to stay in the present because the present is the only thing I can believe in.

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.





s

Field Day

I am considering leaving a day early for Disney so I can avoid sending Robbie to school on field day.  I am just so worried he will get hurt or worst yet have to sit on the sidelines and feel different.  I want to protect him. I just keep thinking what I wouldn't do for a couple more years of not knowing.

I just sometimes can't figure out how to accept this.  He was fine and then he wasn't anymore.  I can't say he's healthy.  I miss saying at least we are together and healthy.  I get stronger everyday, or at least I force myself to think i am. This is so random so unfair I just I  can't believe its happening.

I am so worried that we are going to have to tell him soon.  i don't want to.  Shelby and I are so afraid and sad and I just don't want him to feel that too. He is such a rambunctious kid and even though a year ago that  would  stressed me out now I cherish it because I don't know how long he will be like this.

lately I keep thinking of the time he was born.  We were going through some serious financial hardship and he cried all the time.  Neither him nor I slept much the first 5 months. I feel so guilty that I didn't enjoy that time more that I complained so much about being tired. It sounds silly but i had 5 years where he was just my kid.  There were no labels or IEP's .  No steroids and low sodium diets.  I feel so robbed now.  I think what would I have done if I had known.

I would have taken more vacations.  I would have spent more time w/ family.  I would have yelled less.  I would have played cars w/ him more.  Stressed less about the little things.  I would have made bigger grander birthday cakes (okay not really he doesn't like cake) I would have complained less when he curled up next to me in the middle of the night and stole my blanket.  Not that it matters because I can't go back.

I miss normalcy and I don't think I have the words to explain what I mean by that but God, I just miss it. I am having a rough couple of days having a medical issue of my own, taking Madison for a well baby visit, learning how to do heel cord stretches for Robbie, Shelby having job anxiety,its just a lot. I am not the strongest person and I keep calling on reserves i am not sure I have to get through each day. I'm tired.  Sleep just never seems restful anymore. I just want a cure. I want to watch my baby run.  I want the life we had before. I want life not measured before and after December 15th, 2011. most of all I want a tomorrow for my boy.

Some Times It Just Sucks

We took Robbie to the doctor today because he has a nasty cold.   As we sat in the room waiting for the doctor my mind drifted thinking how much time we have spent sitting in rooms like that recently.  i suddenly had an overwhelming urge to cry. How I miss the days af simple sick visits w/ an occasional well baby visit thrown in.

In the last few months I had forgotten what its like to go somewhere where people know your family a little.  To see someone that seems to genuinely care how my baby is.  As we were leaving we ran into the doctor that ordered Robbie's first round of tests.  She talked to him asked him  how he was.  She looked up  at us and said how are you doing?  I shrugged my shoulders, bit my lip, and said okay.  She hugged me and said"I know, as good as you can be." and smiled a sad smile.

By the time we got to the front desk I was in tears.  I miss being good, I wonder if I will ever be good again or will my life be just as good as it can be considering, for the rest of it?  Some days even though I am feeling stronger I still feel so alone, so helpless.  I stare at other families so jealous they aren't having to fight this battle, wondering if they look at us and can see we are tragic.   The family in front of us was taking forever to check out, I kept staring at the sons calve muscles and I was so jealous that his weren't enlarged.  Then I felt like a horrible person.  I don't want to wish this on anyone else yet a small part of me does.  I am so tired of all of this today.  I just want to be  normal again.

I don't mean to whine but some days I just feel so sorry for our family and my son.Some days I just want things to be different.

Team Awesome

We raise nearly 3000 for the MDA this year. The total from the Atlanta Muscle walk was around 155,000.00. Thank you everyone that supported our team and all the other teams.  Robbie held my hand and walked this years Muscle Walk, Kelsey and her friends carried our team banner.Shelby pushed Madison  n her stroller and I was surround by some of my closest friends.   This was a beautiful and strengthening event for me.  Shelby and i realized we part of a small but determined community now.

Robbie's Team Awesome is not ending here.  I am so ready to fight this disease.  I am so excited about the exon skipping trials I have read about.  i thought I couldn't fight but the truth is I just have a different fight to fight. People need to put faces on this disease. They need to understand the randomness of this disease.  We need to stop this disease. No family deserves this feeling grief Shelby and are I working so hard to overcome.My baby wants to be a cowboy this week and he deserves the chance to do that. All of our children deserve a chance to grow up to reach for the stars.

I am going to hope because Robbie needs me too. I am going to pray even though I am still so angry w/ God.  I am going to be strong when my family needs me to be and I am going to fall apart when I need too.  I am going to demand competent medical care. i am going to try to focus on today and hope for a different tomorrow.  I am going to me involved in saving my son.  When he was that NICU and I had to sleep in that closet on a cot  I didn't back down and I won't now.

I am going to cling to the love and support from my family and friends.  I am going to be thankful for the people we count on.  I am going to forget past hurt and differences and be grateful for the present.  I am going to call my Mom when I need someone tell me I am still normal.  I will call my Dad when I need someone to tell me to think positive.  I am going to stop referring to our families as his and mine and refer to them as ours.  I am going to go out w/ the girls and drink a few when I need it.  I am going to laugh and love.  I am going to cry and yell.  i am going to smile everyday.

I didn't ask for this life and I am pissed it is the one I have but I am determined to make it mean something.  I am going to show Robbie that we are fighting for him.  I am going to help him fight.  i am going to help my girls fight.  My beautiful girls that love their brother so much.   My sweet Kelsey that just when I think she isn't getting it she does something amazing. I love to watch the three of them in the backyard exploring, the girls naturally adjust to Robbies strengths, they are such good sisters.

Please join my fight.  it doesn't have to be money.  tell people about Robbie. Tell them how important those clovers are.   Awareness and research that is what have right now and that is what I am fighting for. Robbie deserves the chance to be a cowboy, all kids o.

Make a Muscle. Make a Difference

Today Robbie wasn't different.  He was special. He wore his favorite color and he grasped my hand.  I thought seeing kids in wheelchairs would be too much to bear but i looked at their faces full of happiness enjoying this day.   I found comfort knowing that even though this world isn't the one i had planned for him its still kind of beautiful.  Hope was boundless today and it felt tangible.

Today i saw Kelsey just 8 years old grasping the enormity of the situation and being damn proud to walk.  She could have just signed her name to the banner but next to her brothers name she wrote, I love you. I was so proud to see her decked out in orange ready to fight w/ us.

Today my family in friends walked in honor of my little boy.  I am so excited that we raised nearly $3000.00. So grateful for every single donation, every dollar takes us one step closer to a cure.  Every person on our team  raised awareness and that is a gift I cherish.

Today I thought of something my brother said a few months ago:"People can be really great when you give them a chance to be."  Some times in life we forget that.

Today when Robbie and i were doing the YMCA, i smiled a real honest to goodness feel it in my toes smile.  He wasn't my son w/ the horrible disease he was just my Robbie and I was grateful to call him my son.

           

The Hand Holding Mine...

Okay please excuse the mushiness i am about to share in this post.
 Robbie's CK levels are extraordinarily high, with the combination of this and his symptoms I feel fairly confident saying we are dealing w/ a case of Duchenne Muscular Dystrophy, said the doctor. I started to feel weak all over i wasn't scream and crying which even then I couldn't figure out where the calm was coming from. Shelby squeezed my hand hard and tight he was willing me to be strong through our hands.  The next few minutes were a blur, his hand holding mine, the shock  just running through me. Eventually they gave us a moment alone...

I sunk into his arms, "not my baby" I whispered.  he held me and we cried the kind of tears you can only have in a minute like that. I looked up at him and I saw my pain in his eyes. he held me while I cried, he cried too.  When i stood up I made some joke.  The tension was so thick.  My mom was in the waiting room.  I wanted to go to her so bad but I didn't because I had to break her heart too,  It was 10 minutes before they came back.  We were calm and collected the rest of the conversation I can't remember.  i know Shelby held my hand keeping me in the moment getting me through it.  I went out to my mom, i could barely talk.  I didn't really have to we all knew what they were going to say and now it was real. we were going to slowly horribly lose this sweet amazing boy.

The next few weeks passed in kind of blur, surround by our family first in Ohio then Michigan we got through those first couple of weeks.  When we got home we had to learn a new way of life.  I am not going to lie I was pretty useless the first 2 months.  A lot of things fell to Shelby.  He never judged letting me find a way to cope.  He encourages my blogging telling me that I am helping him putting my words out there. He gives me strength. I could not have made it here w/o him.

I met Shelby when I was barely more then a kid.  He was older, done w/ college, had an apartment, and for the first time in my life I  felt smart.  He always says people don't know the real me like he does.  I guess that's true.  I never censor what I say to him even if that something embarrasses me.  In him a found a man when before I had only known boys.  Our love was so true so fast a lot of people questioned it.  We didn't back down and we got married quick, had kids quick, and frankly grew up together.

The news of our child's illness could have surely driven us apart.  We fought a ton the first couple of months.  Sometimes all you can do is yell at each other because there's no one else there.  Sometimes we would be in the middle of an argument about politics or something equally stupid and we would just start laughing.  Why are we fighting?  I would ask and we would agree it was nothing and hug it out.  I don't know what the coming years will hold but I do know the hand that will hold mine.

I am sure he's going to be super happy i have chosen to write an entire post about him. I am so in love him even now as I struggle to find happiness every day i am constantly surprised by the amount of joy just being his wife gives me. In a way this horrible  disease has shown us just how deeply we love one another.  I am so grateful he sent me a message on that horrible ghetto match making website.  So glad we met in a steak and shake parking lot .  I love you Shelby.  Whatever else happens thank you for sharing this life with me.

Choice

There is always a choice in life.  Always a a decision that takes you one way or another.  Sometimes we make a choice and we don't even know we made it.  I  have found myself at a crossroads I didn't think i would be at but really why would anyone consider this to be a place to end up?  I have decided that I will fight.  I refuse to be powerless any longer.

I am going to do everything I can to aide funding for clinical trials, research, and treatment.  I don't just want my little boy better. I want no one to ever feel this sucker punch to the gut Shelby and I are reeling from.   It is my goal to not only blog about our journey as openly and frankly as possible but to also make a difference.

I am not going to shy away from the realities of my feelings because I do honestly feel it is helping me and it needs to be said.  I am not going focus only on the positive because I want to be honest and i think you can't have light w/o darkness. Right now I am feeling very positive for the first time in months.  We raised a lot of money this past month for 2 different organizations. I am so proud of my family and friends, and everyone that helped us accomplish this.

i still have moments of darkness, days i don't want to get out of bed.  I am still not on speaking terms w/ God and it takes everything I have not to pull over and let the church w/ the God is Always Good sign know that sometimes god isn't good.  So many people have suggested I turn God right now but I am not sure why I should when he has picked my child for this disease and that this disease even exists. I know that pretty offensive but I mean it when I say I won't sugarcoat what I feel.

I have hope again something I wasn't allowing myself to have at first.  I look at Robbie and my girls and i realize for them I must find a way to hope.  I can't just sit back and let this disease claim my child.  i am not going to accept a shortened life.

In the worst way imaginable I have found a purpose in my life. This is not the cards i wanted but it is the cards I was dealt.   i don't know how to accomplish everything I want to right now but I am going to start researching and finding it out.  My son wants to be a cowboy/police officer/fireman and he deserves a chance at his dreams.  It is my job to give him the chance.  I am ready to fight.

Hero

Last September was the 10 year anniversary of 9/11.  Shelby and I watched a ton of specials about it.  We watched w/ the kids.  I remember Kelsey was scared and so we talked.  I told her how I felt that while this horrible terrible  thing happened and we needed to remember and memorialize the lives lost that day we also needed to celebrate the normal everyday people that were heroes that day.  I truly believe that battles are won by small people making decisions and choices that change the course of history.  There are many heroes in my life and not one of them is rich or famous  but they are all my heroes ,they are making a difference in my life.

The friends that have done so much when they didn't have to.  Honestly, I was terrified of what it would be like when we returned from our Christmas vacation.  The night of the MNO (moms night out if you aren't up on mommy lingo)I wasn't sure I wanted to go I felt so alone and I wasn't sure I could go and laugh and drink, i just didn't think I had it in me.  Then all of you wrote such sweet things, you had contacted so many businesses, you gave me and my kids presents,you  cried w/ me. You got me a free tequila shot.  I have never felt such a genuine outpouring of love and support and i could never use enough words to explain what it has meant to me. You didn't stop there.

You have gotten me through the last few months.  The messages, cards, texts, gift certificates, they always come when i am at the lowest and they always give me a reason to smile.  Anything I have asked of any of you , you have jumped right in and helped.  the fund raising, the walk, the garage sale, you have renewed my faith in humanity.  Thank you, i  am in awe of your awesomeness.

We are just about 1000.00 over our goal for the MDA  muscle walk.  My friends,family, my parents co-workers, the family and friends of my family and friends, you are my heroes.  You have made a difference in my life and the lives countless other families in my situation. Thank you.

Nicole, the pictures you took of my family, the way you captured robbie's personality, your generosity,  your kindness, you are my hero.  I hope that I can find a way to pass that kindness on to someone else and I will always be so grateful to you.

I hope that if there is anything to take from this post its that we all have the capacity to be someone's hero. That simply saying you are thinking of someone or offering your support is enough.  So many times in my life I have stayed quiet when I should have offered a kind word.  Now I know how very important those words are.  How just little things can pull someone through very difficult  times. 

Dream

My little boy dreams of being a cowboy, flying by himself to see his grandparents, and growing up. On December 15th, I feel like he lost those dreams before he even got to reach for them.  I hate feeling this way. Sometimes when we are at a therapy appointment and they are talking about how much he is improving walking up the stairs i cry, because it doesn't matter eventually he wont even be able to do it all.  Then i hate myself because i don't want to give up on him.

There have honestly been moments lately where for brief moments I have forgotten what is happening.  i feel like those moments are are always being stolen by him falling, or call from the doctor, or an ad on a website.  So glad google keeps track of my searches so I can be bombarded with DMD ads all the time.

Sometimes I dream that there is a cure or something that slows this down that gives him more time.  How I wish someone could fix this before he even needs to know.  I still I just don't understand how this happens.  Why it is happening to my family or how I will ever come to terms w/ it.  People tell me it will get easier but right now I can't see that.

It's simple I do not want Robbie to die slowly while I sit powerlessly on the sidelines.  How does a mother accept that?  The little boy that just walked in my room at midnight because he missed me,he deserves a life. How can God not see that? Yes, he can be a pain in the butt, he can push buttons, and he can whine, but he is also sweet, loving, and adorable.

I used to dream of the future but the 1st thing you learn when a simple test takes away your child's future is that your families life is not measured like that anymore.  We don't have a past, present, and future. Only a present.  Life is too short to hold on to old pains and the future is to scary.

I wish there was more I could do then a blog and some charity things.  I wish I had some kind of genius medical gift and I could cure all the little boys and give all the mothers their smiles back.  I know I miss really smiling.  I miss feeling joy.  I miss my faith.  I miss my little dude's future.  I miss the daughter in law I will likely never meet and the grandchildren i won't get to have. Mostly deep down I dread the day he won't be able to offer me his fantastic hugs.

blah...

Some days it takes everything I have just to get dressed.  I know I am depressed but honestly i really am not ready to feel any other way.   i want to care about Robbie's absences, losing weight, and our budget but I simply  don't care.  I am sick of doctor appointments and laundry and cooking and functioning.

Shelby and I are doing a crappy job of functioning.  Seriously we lost a Friday folder which is like a prek crime. We completely missed  permission slip for Kelsey to participate in an activity at school, we never go to bed before 1 am, and sometimes we pick political arguments w/ each other just so we can yell.  I wish we could just snap out of this but i can't begin to imagine how we do that.

I just hurt so much these days, at times it's all I feel. Other times i am so angry it makes me feel sick.  I just really miss happiness, my believe in a greater good. I even miss the stupid stuff that used to make me mad.

It's strange when the future becomes something you can't think of.  The future scares me so much but I miss the hope of the future.  Now it's a dark place I protect myself from.

We are trying to decide if and when to move back home but it isn't an easy decision.  Staying in Georgia offers a lot. Cost of living is way lower, no snow, amazing friends, and this is the place we have raised our family so it's home too.  Home on the other hand has family and you can't really put a price on that. There is a familiarity there that no place else can offer.  I know after we found out both Shelby and i wanted our moms and I don't think that has changed for either of us but we have 3 kids, 2 of them in school and we can't just leave. There is other employment issues at play here and everything is just shaky right now.

I am still in shock honestly, I still type DMD because typing the words is too hard for me because I will say them in my head.  I can't believe this is happening. He had a speech delay.

Sigh...

I never know when the pain will be too hard to push down, what will knock me to the ground. It's almost 3 am. I am watching a repeat of Live w/ Kelly. (Dad, they replay it at 2am, who knew?) it's a wedding episode and I love weddings so i thought this would be good. Then the parents of the groom walked down the aisle. it's very likely i will never be the mother of the groom.

This isn't the way things are supposed to be.

Being Human

I was not going to post about this but after a lot of soul searching I feel it's important that I record this part of the journey just because someday someone might read this while going through the same kind of thing and maybe reading about this will help them. obviously this is my first time dealing w/ this kind of situation and maybe I am expecting too much, although i don't feel I am.

On December 15th our neurologist grabbed my hand and told me they were there to help and would be w/ us every step of the way. he hasn't so much as acknowledge our presence during our last 2 appointment sending in his very nice but very not knowledgeable of DMD nurse practitioner. At the first follow up they almost refused to see us because we were only 5 minutes early and they prefer we be 15 minutes early in case we need to fill out paperwork,which we have not needed to do. Then we sat and waited over an hour in a room. When the nurse practitioner did come into see us she couldn't answer even one of my simple questions. I left very upset. Our 2ND appointment went slightly better this time we were 20 minutes early to not fill out paperwork again and we sat for 40 minutes in the room. Both our pediatrician and nurse practitioner have spent the last 2 months discussing who will do the monthly checks to make sure his steroids aren't causing issues, they have yet to come to a decision but they did read someone should do it. I am not kidding that is pretty much an exact quote. I mean I have read that too, I also discovered that he should be on a calcium supplement, which no one prescribed and when I asked they said that was good idea. when I asked about a medical social worker i was asked to call around and let them know what I found out since other people could benefit from it.

The pulmonologist was especially cruel arguing w/ us that their were several different types of duchennes then realizing she misspoke and said their were several kinds of MD which is of course true but she was really getting nasty w/ us when we had no clue what she was talking about. She then said everything looked good but we needed to do a sleep study to make sure he was getting enough oxygen at night because and this a quote "That's the first thing to go." This isn't a car w/ tons of miles this is my son. I mean who says that? Never once did she say she was sorry or even offer the slightest bit of compassion. Even asking what it was she was supposed to do for us. Apparently she didn't have time to read the referral.

Yesterday we meant w/ geneticist which I was very, very worried about. He was awesome. Asking how we were handling everything ad actually caring about my answer. He was the first person to say that given my family history I am likely not a carrier and that there was nothing I could have done to cause this. he talked to me for 20 minutes, even though my kids were acting crazy, it's was great and above and beyond what I was expecting.

I honestly do not expect everyone to treat us as if we are their number one priority or that their life revolves around what is happening w/ my family but it doesn't take much to act like you care. i realize it is just another day at the office and that doctors cannot get emotionally involved in every case. I think though they could acknowledge that for us our life is currently revolving around this. that our child is sick and as the people we are paying to take care of our kid they do owe us a bit of sensitivity.

I am scared, terrified, unsure, and extremely angry about this diagnosis. I need to know that the people treating my child our educated on his disease. I need the doctors, nurses, receptionists to treat us like humans not numbers. Just because Shelby and I aren't sobbing doesn't mean this isn't still hurting. We have to be as normal as possible for our kids, that doesn't mean that we are indifferent to this disease or that you can talk about my child's body parts like they are car parts. I don't know maybe I am asking too much but am i really? Is it wrong to expect compassion?