It's been awhile...

I have had several people ask me why I have not written in so long. I think Owen's situation overwhelms me at times. When you have mitochondrial dysfunction there is not 1 doctor that does everything. We are always seeing our different specialists to keep tabs on how he is doing. Owen is doing extremely well, compared to other children who have this disease. We have had another muscle biopsy at the Cleaveland Clinic, its showing his mitochondria do not work right. There are only 2 places in the country to have a correct biopsy done Cleaveland and Atlanta. We did not know that, or we would not have done the one here orginally. Owen still fights his battle with fatigue, "tired legs", chronic headaches, chronic stomach pain etc....BUT he does not let it stop him as some of you saw during the holidays. I want to stop him but I am learning to let him make decisions for himself. He is looking at possible sinus surgery coming up because he is on a constant antibiotic for sinus infections. The ENT did an extensive workup, his immune system works but at the very low end of normal. He was also tested for cystic fibrosis due to slow weight gain, chronic sinusitis and it came back borderline. I do not quite understand that but he is being restested. We are going to Cincinatti in Feb for a week to find out if we can help his stomach condition "eosinophilic esophagitus"....biggg word huh? It is basically chronic stomach pain due to an allergis response from food etc. I guess this is why I have not written. I feel defeated some days because he lives at the doctors. Alot of people do not understand this but when you have a multisystem disease, you see the specific doctors for that condition. We see neurology, allergy, ENT, GI,cardiology,endocrinology etc...
Owen is kind of "done" in laymen's terms, no more he wants to scream. I scream it too when nobody is around but what am I supposed to do????? I have learned this is what we have to do, to stay on top of this illness. I have also learned it could be worse and be thankful it is not. Owen is an amazing,smart, beautiful child! I am proud to walk this walk with him and fight this battle.

I know it's been a long time...

Sorry it has been so long, we had a rough summer with Owen. The heat took its toll and we spent most of our days indoors. Owen was also diagnosed with a stomach condition called eosinophilic esophagitis....basically every food he eats makes his stomach feel "pukey and pokey" in his words. We are now battling chronic stomach pain and headaches, he also had his diet restricted more so now we are dairy,egg,soy,beef,all nuts and gluten free. On the positive side of things he has started kindergarten and is doing awesome, I do have one smart little boy I must say. We went back to our mito specialist at Cleaveland Clinic and he wants to do another muscle biopsy there on him. We are awaiting insurance approval our it would cost 22,000 dollars. The reason for another biopsy is the first one is so abnormal he wants to get more and better info. They are also doing a blood test to rule out Myotonic Muscular Dystrophy causing his mitochondrial disease. We are waitng for insurance approval for that test as well.....if you know me I HATE WAITING.
Scarlett turned 2 and is fiesty as ever. She is my beauty and I love her so much. Her health has been fine so far. We sleep on the floor of her room together alot and I look over at her and my heart melts. God delivered this special little girl to make me smile when I need it most.

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..

Back home..

We are home from Cleaveland Clinic and we are all still alive. Yes, after Owen, Mike and I being stuck in a 2 by 2 hospital room together for 2 days. Owen did have an "episode" while we were their by we can't confirm it was a seizure. He was being videotaped and Mike had just scooted him up to eat when it happened. The brain waves showed slowing but they could not see his face........ughhhhhhhhhh talk about frustrating. Anyways, we will hopefully find some answers when they comb through the EEG tommorow. I am slowly but surely learning life IS really what you make of it. No, it is not fair and yes curveballs are a part of our daily lives. When I am walking through the children's hospital halls I feel a mixture of emotions,. I know our situation could be worse and believe me it could be alot worse. I also feel fear that one day it will be worse and that scares the hell out of me. I looked into the innocent eyes of my son this weekend and know he's ok with where he is right now, so I should be too......

Cleaveland Clinic here we come...

Ok, so the past week has been hell trying to get all the insurance stuff straight. I finally got everything figured out and we are going to Cleaveland Clinic Thursday- Saturday. Owen is having a 48 hour EEG to see if we can catch seizure activity. Seizures are very common with mitochondrial disease and Owen was always thought to have them, we just never caught them. I am praying for an "episode" while we are there so we can indeed figure out what is going on. I feel bad because once again Scarlett gets left behind but she is way too little to bring. We did get approved to get the rest of the genetic testing done for Owen as well!!!! I pray we find the mutation that he has so we can test Scarlett and other family members.I have been searching for balance lately between doctors,therapy,work etc..., but I have to realize it will all work out. One day at a time and with patience and perserverance all things are possible. The perserverance is right up my alley, now the patience part I need to work on a little..

Thoughts for the day

Ok here are the things I need to accomplish this week for Owen.....
1. set up a 504 or IEP plan for school next year
2. Physical therapy 2x
3. talk with Children's Special Health to see if they approved us for Cleaveland and the rest of our genetic testing
4. Physical med doctor on Weds am
5.love him, hug him and remind him how special he is
Scarlett needs her mom to be mentally here, not everywhere when I am around. My beautiful strong little girl needs her mom to relax and remember to live in the moment more. My husband needs his wife to come down from the edge of the constant annoyance and have more patience. I also need to tell him I love him more and know that I appreciate what a great husband and father he is. I need a nap....dear lord get me through this week.

Where's the beef...

The kids both went to the allergist yesterday to be retested for thier food allergies. We had our hopes set high for Owen to be able to have beef now because that would be the next thing for him to outgrow. It was lovely being in a room as small as a closet with two screaming kids with hives on thier backs for the test. I swear I was in hell for just a minute, anyway it's over now. The doctor came in looked at Scarlett's back and said hers looks great no allergies but he wants to blood test just to double check peanut. Owen turned around so the doctor could see his back and I knew we were in trouble. He took one look and said all his food allergies are still severe and beef was one of the worst.....ok our bad day now got worse.The doctor left for a minute, Owen had big tears in his eyes and said I am still allergic to beef? I guess this broke my heart for alot of reasons...
1. he can't catch a break
2. we hyped it up because we really thought he was gonna be able to eat it
3. he has a horrible progressive disease and he does not even know it
The disease part because this broke his heart and he kept on saying Scarlett is not allergic to anything , how comwe I am. I thought of this conversation in relation to mitochondrial disease down the road. I actually cryed in the allergist office yesterday while holding him. I thought this isn't fair, maybe he was crying for the beef and I was for the injustice. We have decided we can at least make this change for Owen at home. With spring approaching if you come to our house for a bbq you too will be asking where's the beef?

Just what the doctor ordered...

What a welcome sight the sun has been the last couple of days,we are so ready for spring ! It just seems everything is better when the sun is shining and we could all use that. Life has been good the past week at the Gervasone household everyone is holding thier own. I went to register Owen for kindergarten yesterday, very exciting and nerve racking. I sat in the principal's office, funny it actually made me feel like I was in trouble.We have to set up a 504 plan for Owen which will list everything he will need for school(snacks,extra hydration,rest periods,physical and occupational therapy). I am very nervous to have somebody else take care of him when he is at school. What if they don't realize when he has had enough and push him too hard...I just figured I go to school with him everyday...not. I know he is growing up and I have to let him be like the other kids. This is all part of the growing up process with or without a disease and I have to step back sometimes and let go a little bit. I guess it's easier said then done but for now I will loosen my grip a little bit but I will never let go.

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 suit....it 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.

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..

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.......

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

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...

New day, new hopes, new thoughts...

Ok, so Scarlett slept till 7am this morning...today 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.

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 win...today I know I have a great challenge ahead of me. Mitochondrial disease vs my family, I am going for the knockout.

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...

There is a seal in my house...

Well here we go again, Owen woke up with a hideous cough that sounds like a barking seal....ugh!!! Oh and Scarlett was up the whole night, let's remember the fact she is 18 months old. Only a couple more years and she will sleep through the night. Today I am a mother and I am glad, till about 6pm right??? Happy Birthday to my mom!!! Today I hope she knows how much I love her and feel blessed for all the gifts she has given me over the years. Ok so anyone reading this and knows my mom would think I am talking presents actual gifts. I am talking about strength, love, guidance and support. Everyone says how do you stay so strong through all this, that is what I was taught. My mom gave me the skill most women never give their daughters, survival skills. You learn to deal with your circumstances and move forward. There is no time for feeling sorry for yourself. maybe mitochondrial disease took her strength from the outside but not the inside. I hope Scarlett recieves these skills from me, ok she already has them.There is no room for weak women in my world, man up or move on. Thanks mom , I love you. I have to go take care of the seal now....

Hmmm...

I really wasn't around yesterday because I worked all day. I stood behind my chair for 9 hours and attempted to make people feel better and look better. I have been doing this for about 15 years now and I sometimes wonder is this for me still? I still enjoy most aspects of the profession but my favorite part is mentoring and teaching. I like to help guide young people into making the best life choices for them. My clients come to me for guidance also ,which in turn takes away from my creativity. Beauty,fashion, makeup is a selfish industry. I am now more self less than ever, I almost feel I have grown beyond that. I want to make a bigger diffference in people's lives. I am not sure , maybe I should just move in a different direction......Today I will be a hairdresser again for most of my day but i would like to be a mentor all the time.

Afternoon slump...

Ok, well I have not decided if I will write once a day or more. Today is my first day so I have alot to say or write, well both. I would like to talk my 17 month old's daughter obsession with the toilet ...omg what the heck? I swear I cannot keep up with this kid, now I know why women have kids in their early 20's not mid 30's. Everyone says she gets her stubborness from me but really it's her grandma Jan. My mom was one of the stongest, smartest, toughest women I have ever met. My mom would walk in a room and people knew she meant business. Now mitochondrial disease has taken most of that from her. I guess you could say the stubborness is still there but her mind and body will never be the same. Mitochondria are the powerhouse of our cells, have heard it compared to a city in brown out. I am gonna leave it at that for now, the rest of the tutorial will come later........

Oh my why so early?

Sooo...today is the day. I have been thinking about doing this for so long and I am finally making it happen. I guess this gonna be my outlet and believe me I need one. I am also hoping to raise awareness about mitochondrial disease. Mitochondra-what if I hear that statement one more time I will scream. Mitochondrial disease the illness that took my grandmother's life, has made my mom non functioning most days and now the big whammy my son. That's right I said my son, how dare this disease affect my family so much. I will fight with every ounce of my existance to raise awareness about this genetic disorder. Ok more on that later ,I am also to here to talk about everyday trials and tribulations of being a mother, wife , hairdresser and still knowing who I am in this thing we call life.Today I am mom and our day started way to early......