Sunday, February 28, 2010

The flu and then some..

It has been a rough couple of days, I woke up Friday with the stomach flu...ughh! I swear that is the worst,especially when you really can't rest. I had too much time to think and I am worried about the kids getting it. If Owen gets it, he would have to go back in the hospital and he could have a regression of some kind. People with mitochondrial disease can have neuro regression or lose more strength that they cannot get back when healthy again. Owen is getting weaker and we are going to up his physical therapy to 2x a week and they want to fit him for a special suit. We are calling it his superman is supposed to help the muscles stay in their proper posistion and be used correctly. I just want to do everything possible for him and feel like making him live in a bubble. Ok enough aabout that can't wait for the smell of spring and sunshine, like I said it's just beena rough couple of days.

Monday, February 22, 2010

What to do...

It's a snow day for me today. I was supposed to teach a class today for Wella but it's a no go, roads are pretty bad. Hmmmm now the kids and I are stuck in the house
AGAIN! I really need the weather to break, so I can get some vitamin D. I took the kids outside and they actually played on the swingset and I enjoyed the sunshine. Owen can swing by himself this year!!!!!!! I love seeing him hit these milestones and it is good exercise for him as well. I can tell he is getting weaker in some parts of his body and it makes me sad. I sometimes feel zapped by this disease like I want to say ok you win. My mental strength has not been what it used to and I feel overwhelmed.My day usually includes phone calls to insurance,specialists and researching different ideas of managing the disease. I need to regroup myself and push forward past this. It is not about me anyway, it is about perserverance and determination. We will win or at least know what to do..

Monday, February 15, 2010

This is it...

Mike and I watched the Michael Jackson movie This is It last night and it touched me on many levels. It reminded me of my youth of course but it also gave me a new perspective on Michael Jackson. I felt I actually got to know him a bit and learn what he may have been like as a person. I know many people thought he was a "freak" and were digusted by who people accused him of being. I always wondered what did Brooke Shields or other women see in him? I watched this film and he dripped with talent. I mean to the point where it is almost unreal that one person to be that much of a musical genius. The way his music and dancing could make people feel was almost like he cast a hypnotic spell. I know he dressed wierd and had plastic surgery till his nose almost fell off but it still did not change him inside. I hope I can touch just one person like that in my lifetime. I want to be impressionable in the world and make a difference for myself and my family. I am constantly searching for my path and I hope to one say this is it.......

Friday, February 12, 2010

Think about it....

The following poem was written by a boy who suffered with Mitochondrial Disease, and even lost some siblings to it. His strength was truely amazing and it shows especially when you read his poetry.

If they would find a cure when
I'm a kid
I could ride a bike and sail on rollerblades, and
I could go on really long nature hikes

If they would find a cure when
I'm a teenager
I could earn my license and drive a car, and
I could dance every dance at my senior prom

If they would find a cure when
I was a young adult
I could travel around the world and teach peace, and
I could marry and have children of my own

I could... If they would
I could... If they would

If they would find a cure when
I'm grown old
I could visit exotic places and appreciate culture
And proudly share pictures of my grandchildren

If they would find a cure when
I'm alive
I could live each day without pain and machines, and
I could celebrate the biggest thank you of life ever

I could... If they would
I could... If they would

If they would find a cure when
I'm buried into heaven
I could still celebrate life with my brothers and sister there, and
I could still be happy knowing that
I, knowing that I, was a part of the effort

Monday, February 8, 2010

Peace and quiet..

I had a good day today, the sun was shining and all was quiet on the home front. Owen and Scarlett are returning to their" normal". I say that only because everyone's normal is different and I am truly learning that. It is ok that not everyone is the same and no two kids are alike, especially not my two. I love the fact that they look so much alike on the outside but are not even close to the same on the inside. Owen is my sensitive, careful and laid back child. Scarlett is my in your face,climbs on everything, nothing scares her child. I love them both with all my heart and they teach me amazing life lessons everyday. Today was a great lesson, learn how to be ok with the most basic days. I did not work,call doctors, or overthink life itself. I lived in the moment surrounded by peace and quiet...

Sunday, February 7, 2010

New day, new hopes, new thoughts...

Ok, so Scarlett slept till 7am this is gonna be a good day. Owen slept till 7:30am, so the steroids must be making their way out of his system. I was looking at Scarlett this morning and thought, wow your beautiful. She is such a sweet looking little girl, with a devil of a personality. Mike and I went out to dinner last night and had a really nice time. We had normal conversation not involving doctors and fears and tears. I really love him and I am so happy he came into my life. There are not many men that rate high in my mind besides my dad but Mike is up there. I hope to have a better week and return to"our" normal, so Owen can go back to school. I think the pit in my stomach is subsiding pushing thoughts of negativity away and inviting positivity in. I need to make a turn around for my family and myself , I am looking forward to this new day.

Friday, February 5, 2010

Bad couple of days...

Well, I think everyone at work is officially concerned for mental health. I had a mini nervous breakdown in the back room and have not cryed that hard for awhile. I love my girls for being there even when they feel at a loss for words. Owen's doctor called me and let me know she spoke to his specialist. Every time Owen gets sick he will have to be hospitalized to prevent dehydration. Dr. Cohen the specialist said he does not what form Owen has yet because he fits in all the categories. We also have to put him on a weight gainer because he has not gained a pound in over a year. The brain mri isn't "terrible" but it did show something. He was also have an inpatient 24 hour eeg to see if we can catch seizure activity. Yesterday I felt defeated like this disease is gonna I know I have a great challenge ahead of me. Mitochondrial disease vs my family, I am going for the knockout.

Tuesday, February 2, 2010

Hospitals,doctors, albuterol oh my.......

Well, Owen was in the hospital again a nasty bug took him down hard. I love when people say oh yeah my kids have been through that,breathing treatments, nebulizers and what mitochondrial disease. Oh really do you wake up every morning hoping your child has not regressed physically or mentally. Do you talk to your doctor about placing j tubes for hydration and brain scans that may or may not show something? No,no most of you do not so pleaseeeee quit telling me you know how I feel. Ok, now I feel better not great but better. I do not feel sorry for myself, really I do not. Today I am a mother and I am angry. I am angry at the healthcare professionals for not knowing enough about my son's condition to help him. I am angry that I have to force my son to take 6 supplements multiple times a day and hope it "protects his cells". What a load of crap he is not supposed to be sick, he is a beautiful 5 year old child with hopes and dreams. Today I am a mother who will not take no for an answer and won't ever stop to the hopes and dreams come true...