A flare by any other name is still.. well A FLARE

Nothing is more frustrating than the unknown. The uncertainty of unpredictability of a disease that no one has really any control over. It leaves you powerless and spinning like the tidy bowl man round and round down that endless drain of despair of flush. We all grasp for the golden ring of hope, the positive behind every situation. The strong arm to hold us up over the hump to make it through but glooming over is always the thought will it happen?
Well that is exactly what happened. I had been making it along rather well. TOO well I guess you say. beautifully. Eating good. Exercising. Getting to do so much I have missed. Beach time with my girl (HEAVEN)                                                                                                                                    me john bella at the beach Being able to drive again and work out (LIKE A BEAST MIND YOU!) Being able to feel like myself again. THE NANCY I know I AM. Not this person that is in a wheel chair or on a walker. on massive doses of ridiculous medications that make me feel like a zombie. It is like a light switch popped on and I came out of a coma. It has been so wonderful for my child and for my husband especially for my self and my psyche.

I have enjoyed every second

checkers with daddy

going and doing as much as possible. You can’t help but have the thought, though, of  how long will this last?
I know, I have been eating good and proper  with LOTS of help!
helping mom eat healthy
and exercising

and trying to keep my stress down to a minimum but hey LIFE HAPPENS. You know how some people just live to PRESS your buttons and see if they can set you off by beating dead horses. Bringing up everything in the world they can to see if they can bring you down.

 That is what I need to work on.  How to not let it get to me. How to deflect it and understand why they have to be that way. It is so hurtful and makes no sense why. breaks my heart. I still don’t understand that. What do they gain in my being sick?  Instead (dr orders) I have to separate myself from it. This is life or death.  yes I have heard this many times but he is NOT PLAYING now. He wrote it on paper. This is Not just oh I feel bad. This is not swallowing face going numb losing eyesight. major organs can fail. I don’t think some people get it. NO I am not whining or complaining just want people to leave their drama over ~~~~~~> and their nasty comments away. If you can’t be supportive. Then go away. simple as that. I don’t have time to be anything but happy.

 Sometimes I wish there was a switch in my brain I could click off to make me just not care. It would be so easy. Especially when it involves my baby girl.
she is my world.

charlie and bellabug bw

My husband’s and my responsibility  solely is to protect her and to raise her in the way we promised before God. We stood in a church and vowed we would raise her to not take up to ungodly means.  We were blessed with this child we thought we never would have, It was our duty to return our blessings and thanks to God that promise  and we will keep that promise. NO MATTER what. No one will get in the way of that. Nor will a disease.
so Do you have a happy place?
We sacrifice whatever to make her have a better life than we did.
Having said that. She has gotten very used to me feeling better so this flare up is hitting her very hard. She was getting used to the mommy that got to play. That was getting out playing outside. Going to the beach, at the gym all the time. I was making her so proud. She is NOT NOT NOT happy right now. she is struggling. It hurts her heart. which in turn breaks mine. Disappointing this child is the biggest issue I have. I want her to be proud of her mom. Not to be embarrassed her mom has ms. I want her to see her mom as a fighter that doesn’t let it stand in her way. That will fight the dragon and not just fight it BEAT IT. I had a very strong example growing up. I guess I want to pass that on to her. NEVER give up. I don’t want her to know the word quit. I want her to know a strong sense of self as well as will power.

She can do anything she puts her mind to.

I know it is ultimately her decision. She is her own person. We can only be the example. I just can only pray I give her a good one to follow. That she knows we are relying on the good book, the man upstairs for answers,and each other to keep it real. Staying positive. Never quitting and giving her all the possible love and opportunity we can muster in our beings                                     .

face i get when daddy and I are singing and dancing

Truth is, A flare is a learning experience. set backs happen. It doesn’t mean its the end it just means its time to regroup back up re evaluate and try again. Dust yourself off and get back up. that is the important part. GET BACK UP. Never stay down keep going my dear. keep fighting. Keep dancing, keep singing, keep smiling. Things happen. Life will throw curve balls we just have to learn to adjust the way we swing the bat.

dancing at the electical parade
This is only temporary. You are forever. We are forever. Us 3. No matter what comes up we got this. no worries Bella and lulu chillin
Stay focused on what we know… what we know works. What we know doesn’t work, we will  leave outside influences where they are. BE POLITE but,  concentrate on our goals and keep focusing  on the challenge before us. we got this.  Love you with all my heart and soul ,

Love your mommy and daddy and yes charley and the 4 cats!
fun charley pictures


Growing up too soon…

My sweet Bella,
You are growing up much too fast to suit me. So much has been happening in your little life around you.  Scary things.in the world , How do we explain this cruel world to you. We as parents struggle so hard with giving information to you so you will know more how to handle things than we did, but then we are faced with our babies dealing with adult situations and growing up too early. I just want you to be 8.

 You have so much to deal with in your life already you shouldn’t have to have all the rest of the crapp that this world is dealing out, ya know. You seem to deal with it like a champ though, I have to tell you.
I fear some day you will need to discuss all this with your counselor and say yup back in 2012…. or whatever they call them when you hit 40 and have little kids running around of your own making your hair need “highlights.”

You are wise beyond your 8 years. Although, you are quick to let me know You are almost 9. You worry. ALOT. about everyone, especially me. I try to keep you from doing that. I hide I guess you say, maybe too much from you, about what is going on.  Which makes your mind wonder the worse. Maybe I should explain more about what this is. Shingles scare you more than anything. My shots terrify you. I have tried to explain them that they are no big deal but you see the repercussions.To and 8 year old a shot is horrible and upchucking and a horrific rash well… ya.  How do I get it to make sense to you when We can’t make it make sense to us?

You are very intelligent. I know when you are scared and worried.  It shows in your school work. It shows in your behavior. I try to make up for it extra when I feel better. No amount of time, hugs, kisses or words can take it away I know. Maybe that’s why I scrapbook so much for you. Just to be sure you know?
You are growing up. You don’t need me to buckle your shoes any more. I made this realization today. It hit my heart. You are growing up so fast. Im so very proud of you.I hope you know that.  You are such a smart girl. A brave girl. You make good decisions. You are so helpful and kind. You have such a beautiful heart. I don’t want ANYONE to change that. You do have your spunky side too. I like that too. You are funny. Very quick witted. You make me proud to be your mom.

You have always been independent. From the get go. The first look on your face when you came out was one of “OK where am I and lets get this show started.” You are so much like me there. Maybe that is why I am so protective of you in some aspects. I don’t want you to make the same mistakes I did. Daddy and I also try to filter away the things that are damaging. I didn’t have that luxury.  Maybe thats why we are so particular on the school you go to, the people you hang around, The things you do.. If we seem overly crazy on that JUST KNOW there is a reason. There is a method to the madness baby. It stems from the fact we love you and want the best for you.

I have been down some roads and made a lot of mistakes, have had a lot happen, seen many things,   I do not want you to make those mistakes. I plowed those roads I experienced them. I don’t want you to. SO I put up the great big “DANGER DANGER SIGNS” so you won’t go there. NOT because I don’t want to be mean no wire hangers mom or for you to not have any fun, but, I don’t want you to experience the heart break, the pain, the disappointment. Yes I want to protect you. Its mothers instinct.  
Did these experiences make me stronger? yes, Did I learn things from them, OHHHH yes, I can tell you a lot of things that DON’T work… But, I would much rather you learn from my mistakes and the mistakes of others than having to learn from the experience it yourself..the hard way. But if your anything like me you are probably going to have to take some of those bumps just to find out for yourself. KNOW your mama will be right here. waiting for you. Ready to listen and beat the bad guy with her shoe. dry your tears, whatever it takes.
So My sweet Bella.. all of 8 years old.. growing up way too fast.. my sassy little mini me. Slow down… Don’t be so closed off that you miss the point,  open minds will open hearts,  and just pass by that road  there thats so bumpy that has been down by all of us. . Your mother has already been down that road. It is dark, it might look like it is lots of fun, (and at times ya it kinda was) but in the end… trust me. The one on the right… is the smart decision. Not because I said it was.. Because I lived it and have the battle wounds, scars, memories, and ya Im sure there are photos out there somewhere to prove it.
I love you baby….


never forget…. you can always come home no matter what.