WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Saturday, June 23, 2012

Mito Teaches..






Believe it or not being on the Mito Journey has taught us a lot of really positive lessons.

1) My daughters are my life. I never really bought into that personal fulfillment racket that claims you cannot be a happy person unless you prioritize yourself above your children and spouse. Mito reinforced my opinion.

2) It has made my marriage stronger. Derek puts our daughters above everything else as well- I suppose we always have been aware of that in each other, but Mito brought that awareness and that bond to the surface.


3) I always suspected that Drs. could be wrong and to avoid Drs. that refuse to admit they are wrong. Mito proves that we often know more then they do, and if the Dr. refuses to admit that or brushes aside your methods- you should break up with them and FAST!

4) There are a few Drs. out there that do think outside of the box, and they are rarely the specialists. Our family Dr. who applauds our methods and gains, the podiatrist who has another patient with similar chronic health issues, even the alternative health practitioners who approach health delicately instead of steam rolling. Mito has taught me to appreciate Thinkers- those who learn the rule book, but love to figure out how to work outside the rules-

5) We are what we eat. Food is critical- it is the easiest way to address the enormous energy issues with Mito. If you fuel your body with fuel that it is not meant to have, you will hurt your body. Hands down, the Mito has taught us how miraculous the human body is and that all the chemicals the Government lets manufactures put in our food is hurting all of us, just slower in healthy people.

6) Strengthened my political beliefs. Dependency on the government may serve folks today, but will destroy America tomorrow. From vaccines to FDA approval on medications Mito has made me very aware that we are a nation becoming dependent on the government/Drs to make our decisions for us- when we are quite capable of taking care of ourselves- maybe it is easier to let someone else do it, but the pursuit of happiness cannot happen without the freedom to make personal decisions- and our bodies are kind of number 1 on the personal decisions list.

7)Mito has spotlighted my personality characteristics. I am stubborn, opinionated, determined, different, and intolerant of ignorance. I have always been aware of those "flaws" but Mito has taught me that Abby is lucky I have those "flaws". Without my willingness to challenge various treatments Abby would not be eating normal foods right now, odds are she would be in the hospital violently ill.

8) Mito has taught me I have a lot to work on.. I am not patient, or as tolerant as I should be, I expect everyone to think for themselves despite a culture that discourages it. Just because I am willing to stick my neck out there, doesn't mean everyone else is capable or willing.

9) Conformity can enlighten or kill- depends on who you pick to lead.

10) It is better to think from a stationary position. Over the last couple years I often felt like we were being left behind in a world that values running from sun up to sundown. Up and dressed at 6am- to work or to the gym, to clubs and groups, to the schools, to after school activities, daily social gatherings.. it made me feel isolated that we could not keep up with those who live that life style for a long time. But, Mito has taught us when you are running you aren't thinking. Being stationary has vast advantages once you are willing to let go of the cultural norms. Protecting her energy at all costs has opened a very different but very rewarding world to all of us.

11) I value my friends and family who see that though we live differently, we have a different type of richness in our lives- they share the world they get to explore and we gobble it up, and they see that despite being stationary we have a whole world to share with them too- trade off not judgement makes our worlds and friendships much deeper and richer. I value those who do not look at my life with pity that we cannot live as they do, but see our choices as valuable and rich in our own rights.

12) Generally, as humans, we react violently if our beliefs are challenged. If I have a Dr. that practices medicine in a way that fits with our lifestyle choices, it is very hard to accept that the same Dr. maybe very wrong and bad for the next patient. No one no matter how educated knows everything- and anyone who claims my knowledge has less value then theirs I tend to run from. I have learned to look deeper then what works for me, and acknowledge it likely won't work for someone else.

13) Children do not have the same rights as adults. As an adult I have the right to chose whether to accept a treatment or not, when it comes to children the government and Medical worlds have more rights to those decisions then parents. That is wrong- parents rights need to trump the Government or Drs. Through the Mito journey I have watched children receive treatments that their parents did not necessarily agree with but because they were considered the "gold standard" they had no choice(the fear of courts,judges,CPS prevent many from saying no). Mito has made me very thankful that the first muscle biopsy simply showed undefined myopathy and not Mito- for a long time having an undefined diagnosis seemed horrible, looking back Abby benefitted tremendously from not being forced into that tiny diagnostic box.

14)Mito has taught me that materialism can interfere with prioritizing our families. I have friends who work not just for the personal career satisfaction, but to buy that new car every 3 years.. to have granite counters(is autumn yellow really that bad?)to have that Wii or those family vacations.. I have watched them turn the care of their children over to the schools, the daycares in order to work to buy those toys. If that is the lifestyle you want great- but, what I have learned is a lot of Mom's want to be home with their kids- finger painting, cuddling, but feel too pressured by our culture to do it all. Our value is often tied into being super mom - we call it the "plastic family" ideal. We have plastic family friends who are healthy and loving and we cheer them on! But we also have plastic family friends who feel incredibly pressured to be plastic families when in reality they would be thrilled with autumn yellow countertops if it meant being able to raise their children vs paying someone else to do it. Choosing Autumn countertops over granite left me insecure for a long time.. Mito taught me I am one of the lucky ones. I ignored the social pressure and did what was right for our family.

15)Sometimes we know too much, knowledge can be dangerous. Mito has taught me to trust that good old Mom gut before my brain.

16) The internet was not created by Al Gore- but by God and all those angels to keep all of us Mito families sane and healthy!!! LOL In all seriousness though, I still remember when Abby was 15 months old and Dr. told us they were sure Abby had Muscular dystrophy- I was destroyed. A friend invited me to go on their new computer and see if I could find something on the internet. I had heard of the internet but still had this image of those awful first apple computers where we would spend all semester typing in miles of codes so that at the end of the term we would be rewarded with a dotted smile- that barely replicated a smile!(boy that dates me, doesn't it?) There wasn't much way back then, but the little bit that there was I read in two days and learned more then what I would learn in 30 appointments with different Drs. When Moms all finally managed to plug into the internet the surge in information was amazing! Today, we get 10 minutes with a dr- but we share that 10 minutes with 1000 other Moms who each share their 10 minute experience and we suddenly have 1000's of minutes of knowledge at our fingertips- talk about miracles in my lifetime!

17)I feel very lucky that Abby has stayed this healthy. Our hope is that she stays this healthy forever, but on the off chance she were to get sicker she is old enough to decide whether to get a feeding tube or any of the other highly complex decisions so many Mito families are faced with..In Derek's family they have Huntington's disease. We watched an Aunt in her 30's slowly and painfully starve to death in pain and agony for years. His family believes in doing everything to maintain life- my family is different. Some of us might fight for awhile, but we often chose comfort and peace over fighting once we know the end is coming. I don't want to ever have to make those decisions again- Neither Derek or I believe in prolonging suffering, we decided to let our second child go shortly after birth because of how strongly we feel. Though I feel we made the best decision for our lost daughter, it was the hardest thing we have ever done- I don't want to ever be faced with that decision again, with anyone I love. I feel a bit like a chicken feeling so relieved that with Abby even if she were to get sicker(which we doubt) that we won't have to decide- it is up to her on how she wants to live her life- there is freedom in knowing that and knowing that we will feel very comfortable supporting her individual decisions no matter what she decides to do in her life.

18) Each smile we share with another human is a priceless gift. We play the smile game when we go out and about(we started it when the girls were barely out of diapers)- we all compete on how many people we can make smile back at us- Abby always wins- but it is a valuable game. On my darkest days a single smile or kindness even at the grocery store can completely put me back on the right track- Mito has taught me that basic human kindness is the heart of everything.

19) Mito has taught me that your journey is just as scary,just as tiring, just as draining as mine. A Mom with an asthmatic child suffers the same fears, concerns, terrors that a Mom with Mito does. A Mom with a talented ballerina child who breaks an ankle suffers the same anguish that I suffer. The Mom of a child who is anorexic or bulimic suffers the same emotions and anguish that we all do. Mito has taught we all suffer equally- different journeys but the same emotions.

20) Finally, the truth is, you cannot spoil a baby by holding them all the time. I promise you, love those babies all ya want! Mito reinforced that despite me holding Abby 24/7 and her co-sleeping, she turned out amazing! So pick up those babies!

2 comments:

Jenna said...

So many thoughts, I know a lot of comments I have will be forgotten.
The internet is amazing! At times I do miss the idea of simpler times, but it is truly amazing the connections we can make. I know that I am the type of person if the internet wasn't around I would be at the library researching and making calls constantly. But I am very thankful I don't have to. The information we have gained has been so amazing. Technology is not make for the special needs community, but I know it has benefited us so much! I can't imagine life without it.
I am sorry to hear about your loss. I have friends that have lost babies who had to make impossible decisions and I have friends who have had to hold there dying babies in their arms with no decisions. Either way it is so unfair and so hard, it is something in a perfect words no one would have to face.
You are such an amazing person and amazing mom, I agree that I don't have to put myself ahead of my son. I believe being a parent means he comes first. I also held my little boy so much and co-slept. (he still ends up in our bed most nights. I moved his bed into our room this week, hoping it will help with that. I do have comfort in having him close)
I don't agree with big government either, my political views have changed so much though since having a child. I don't even know where I stand anymore. I would love small government, but really want there help with medical expenses for Matthew. This goes against so much I used to believe but choosing not to to work to be home with him it is hard to pay medical bills, even if I was working medical bills would add up fast.

Circus of 6 said...

I agree with you on all points!! You are an amazing family and may God bless you in your journey together :)

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