I have tears today...

"The Special Mother" by Erma Bombeck

Most women become mothers by accident, some by choice,
a few by social pressure and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how these mothers are chosen?
Somehow I visualize God hovering over Earth
Selecting his instruments for propagation with great care and deliberation.
As he observes, he instructs his angels to take notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint, Matthew."
"Forrest, Marjorie, daughter. Patron Saint, Celia."
"Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."
Finally he passes a name to an angel and smiles. "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who knows no laughter?
That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.
Once the shock and resentment wear off she'll handle it."
"I watched her today.
She has that sense of self and independence so rare and so necessary in a mother.
You see, the child I'm going to give her has a world of its own.
She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time, she will be witness to a miracle and know it.
I will permit her to see clearly the things I see--ignorance, cruelty,
prejudice--and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life
Because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air.
God smiles. "A mirror will suffice."

hmmm sleep would be nice

Well it is about 3:22am and I can't sleep! I wish I could blame it on Scarlett but she is actually sleeping right now...hopefully.I just gave Owen some tylenol to help bring down his metabolic fever...yep that's right wierd I know.He played alot the day before yesterday and now he is fighting bad stomach pain and a fever that goes up to 103. He is dealing with a chronic stomachache for over a month now and we are waiting to have him scoped.I can see his body fighting itself and it scares the crap out of me, but this is his reality. Yep...his reality you play like a healthy 5 year old and your body goes haywire. So what are my choices be a overbearing,suffocating mother..or let him do it and pay the price. The scary thing is if his energy gets too drained he could regress or lose more healthy mitochondria and then what? Let's see end up in a wheelchair sooner, or maybe start having seizures. I don't know the answer that's why I am writing this at 3am in hopes of my brain relaxing a little.
Scarlett is still helathy as a horse and as beautiful as they come. We are having alot of sleep issues since moving her into her big girl bed. We seem to spend alot of time together around 2am or so. I almost dont mind in the sense we can bond be together just her and I. She makes my world alot brighter that is for sure:)I can't believe she will be 2 soon! Ok with all that said I hope my mind can now ....nope Owen just called me, no sleep for mothers right?

Mitochondrial disease symposium...

My husband and I just returned today from 5 days away from the kids. I know we both really neede it but it was a bit too long. We actually spent 3 days in Phoenix at a mitochondrial disease symposium.. It was a great experience with people that actually understand our situation and live it everday themselves. There were doctors and families who came together to learn more about this disease, I felt at home. It was a truly remarkable and I am so thankful we were able to attend. Mike and I then ventured to Vegas for a couple days, the whole trip brought us closer together. Owen is hanging tough, although the summer is kicking his butt. He has developed alot of stomach problems lately, so he will be scoped in the near future. Scarlett is growing more beautiful with each passing day and her smile gives me strength to move forward. I am blessed, I realized that while I was away. My path may be a little different than others but I own it....

from graduation to hospitalization.....

Owen graduated from preschool this week yeah.......next day we landed inpatient for dehydration..... All my mito mom friends can tell you as well summer is the enemy for most of our kids. Owen is having a hard time regulating his body temp and can't cool down easily. He will go outside for 10 minutes and sweat for a good hour after causing him to lose alot of fluid. We are looking into getting him a cooling vest so he can play outside a little bit. I am trying to pick a school for Owen for next year and this has become a real challenge. I would love a private lutheran school but alot of them do not have enough resources for kids that need extra help. The public schools offer that but the class sizes are so big and Owen would get lost in the crowd. I am glad I have the mother I have at times like these, we can both be hmmm a little vocal at times. I can fight the fight to do what is right for my children and people usually listen. It seems MY daughter has that quality too.....god help me!

Happy Mother's day

I am finally realizing why we learn certain lessons in life and why we have the parent's we do. As I was growing up my mom represented strength and wisdom to me, with that no nonsense kind of love. I remember going to her work and feeling so proud of all she did there. My mom lead a group of nurses like no other, she offered mentoring support to everyone and changed lives. I remember sitting on her bed watching her get ready to go out with my dad and thinking wow is she beautiful. As I grew up and became a teenager my mom gave me my own identity but made sure I knew SHE was the boss. I now know during these times my mom struggled with depression, taking care of her sick mother and working full time. I would have never known because she made all look so easy. In my child eye's I thought everything was great and never realized how much she went through. My mom didn't bake cookies, wear an apron or attend to my every needs. She gave me something else I would need later and life, strength and perserverance. I did not know I would have a child who would be sick. I know she gave me the tools I needed to be able to take care of him and not feel sorry for myself. It's funny I look in the mirror and she looks back at me now. I am slowly evolving into her and that makes me proud. Happy mother's day mom, I love you!

My heart is full of love!

I know it's been awhile but I have been working through some things. Today I want to talk about my amazing group of family and friends who came out and walked for the MDA in honor of Owen. I am so proud to be part of this circle of people, they are awe inspiring! I finally feel like I am making a difference in this world and working towards a brighter future for Owen. I fell into the MDA and am now welcomed into a whole new family fighting to help cure neuromuscular diseases. My beautiful boy had a grin from ear to ear today as Owen's team Super Mario walked to raise money for his cause. This illness has brought me friends I did not even know I had and closed in my circle of the ones I did have. Today made up for the previous one, and the one before that,etccc....My last few weeks have been a struggle but not today,not today! My heart is full of love and I am too...

Mito taking a toll..

it has been awhile since I wrote and I need to express alot on here today, I am angry. I am angry at this ugly disease that is trying to damage my son. My beautiful 5 year old boy who does not know the fight he is up against. We have recieved our results from Cleveland Owen has Encephalopathy in his occipital lobe of his brain. What the hell does that mean....his brain is being affected now too. We also went to the Dr last week and Owen is not gaining weight and he has developed an "extra heartbeat", so we go back to the cardiologist as well. In the words of Owen's doctor this disease is now affecting all of him. WTF...seriously mitochondrial disease...seriously lets go you and me. I will take you down one day, you will not harm my son or any other beautiful child ever again. How dare you make kids sick,tired,weak,have seizures,fail organs,not grow,dehydrate etc..., how dare you. I promise you this I will fight with every ounce of me to beat you once and for all, until then go pick on someone your own size..