Tuesday, May 14, 2013

Am I Really THAT Strong?

Am I Really THAT Strong?? The answer is Yes and No I guess.  Some days I wake up and feel I can take on anything.  Some days I wish I could stay in bed and miraculously it will all get better.  I can say the Yes happens way more than the No.  I wish I could say I am strong all the time, but I’m just not.  I fight hard.  I love even harder.  I appreciate every day.  I take nothing for granted.  I can adapt to change.  My faith is strong.  I am a Mother Warrior.

I am weak.  I am vulnerable.  I do cry.  I do scream.  I’m tired.  I do feel anger.  I do feel resentment.  I am not perfect.  I never will be perfect.  I love with a love so strong that I’m not sure anyone else has ever felt.  I am blessed.  I’m lonely.  I’m happy.  I’m grateful.  I’m real.  Writing all of this down makes me feel good. 

This is all still so new to me.  How can it be new, because it’s so old?  I feel I’m not supposed to feel any more feelings about everything that’s happened in my life because it’s been too long.  I shouldn’t, couldn’t, still possibly feel the same feelings.  Why do I?  Am I weak?  It will never be okay, it will never go away. 

I’m sad.  So very sad.  No matter how long ago I heard the words Mitochondrial Disease they won’t go away. The words There Is No Cure, There is No Treatment still echo in my mind every day.  I have tried so hard to beat it – but it keeps winning.  Why can’t I win? I’m scared.   

I’m angry.  I feel guilt because of my anger.  Why do I feel guilty for feeling angry?  It makes me feel terrible that I feel anger.  I should never let anger get in the way of happiness.  So I try not to let it overcome happiness.   I try.  I focus on happiness and joy.  I focus on love.  On hope.  I focus on the courage to fight each day with a smile on my face.  I have faith to help me through all of this.

I’m tired.  So very tired.  But not near as tired as he is.  His little body fights so hard every day just to be here.  I can’t be tired, I won’t.  He fights so hard.   How can I complain that he hasn’t let me sleep one single night in the last five years?  He hasn’t slept one single night in the last five years either.  It has to be so much harder for him.  I can’t be tired.  I’m so happy he’s still here with me to wake me up and feed him during the night.

I want to fix him.  I can’t.  It's the worse feeling.  The sick truth – Mito will most likely take my sons life.  A crash could happen at any time that he may not be able to bounce back from.  Mito will be the reason my son leaves me to be with Him.  That’s something no parent wants to hear.  It has made me view life entirely in a new way.  A better, more appreciative way. I never knew children who died before.  I never thought of it happening to me.  It’s the worst thing anyone could ever experience.  I’m not saying losing a loved one is easy, it’s just horrific to lose your own child.  I’ve seen too many little ones get their angel wings way too soon.  Mito is life changing for the better and for the worse.   

I try to be as proactive as I can when he is ill.  It’s the only thing I can do to help him, but is it enough?  Sometimes I wonder if I’m being too proactive, to the point I feel crazy.  Should I take him to the hospital, should I not??  I pack a bag, I wait, and then we always end up going.  When I get there I realize I shouldn’t have waited.  I should have had him there sooner.  If I did maybe his stay wouldn’t have been so long.  I blame myself.  Always, everytime.  A simple thing as vomiting twice in 4 hours can dehydrate my child for 23 hours.  I wish I could give fluids at home to keep him out of the hospital.  Who says that?  What is sane or even close to normal about that?  Nothing.  I have another child who vomited for 2 days straight and never even got close to being in the hospital.  Her body can fight back.  My son is there every single time he gets the smallest illness.  I have to face the reality it is the best place for him.  No matter how many sticks he has to endure.  It’s worth it in the end to help him get better.  He can’t get better on his own.  He has to have help and it’s my job to make sure he gets it.  I know I can make it through his tears, his screams.  Because at the end of it all, he looks at me and I see how much love he has for me.  He always hugs me.  I am his mom and I just helped him feel better at his worse.  It’s truly rewarding, even in the worse of circumstances.

He fights for his life. Every day he should receive a gold medal for dealing with “his normal”.  Every child with Mito should.  Every special needs child should.  Life should be fun.  His fun is so different.  But he does have fun.  He has accomplished so many things I really didn’t think would be possible when he was diagnosed.  He gives me hope.  His smile lights up my world.  His life is hard, but he just doesn’t seem to let it get him down.  He is an example of extreme joy.  I am here to make every single day the best I can for him.  No matter what.  No matter how hard it is.  No matter how many doses of meds he fights, no matter how abnormal it really is. No matter how much he cries.  No matter how hard I cry.  I will make it the best I can.

I pray.  I have faith.  I believe in the power of prayer.  I believe God chose this life for our family.  I have to.  It helps me make sense of all of this craziness.  I don’t blame God, I don’t blame myself.  At least not anymore.  Yes, I’m guilty of asking God why he would do this to my child, to anyone’s child.  I have felt guilt that I had to have done something wrong to cause this horrible disease for my child.  I didn’t do anything.  God knew Trace could handle this. He knew his strength before he was born.  He created him.  He put him here for a much bigger purpose than playing baseball, running, talking or any other normal child things. I’m not downplaying those things.  They are wonderful.  I have a child without special needs.  I push Peyton to excel in everything she has ever done.  I will never stop being proud of all of her accomplishments.  Peyton is just as special to me as Trace.  Just as loved.  I am so blessed to be her mother.  I have received the greatest of gifts.  I am a mother to a special child and a special needs child. 

It’s not easy.  Nothing as amazing and rewarding as being a mother should be though.  I am not your typical mother, I am a Mother Warrior.  I will fight until the end. 
Happy Mother's Day to all Mother Warriors.
Hope, Love, Courage &Faith,

Thursday, May 2, 2013

Catching My Breath

There have been so many changes happen in our family the last couple of months.  I'm still trying to catch my breath.  Change is good - well most of it is good. 

We have decided to sell our home.  This decision wasn't an easy one.  I live in my dream home - I designed it and my father built it.  It is on a tranquil few acres and I have loved every minute of living in our home.  Unfortunately all of our plans we had for our future when we built this home have changed.  Our children were going to enjoy the country life.  Playing sports outside, fishing and building hideouts in the woods.  Only Peyton has truly been able to experience those things and now I guess she's too old to build hideouts anymore.  Trace's mito doesn't allow him to enjoy being outside but for very short periods.  Thomas' job is 3 hours away and he is only here a few days a month.  Peyton will be leaving for college after next year.  I don't want Trace and I to be all the way out here alone.  It's so lonely sometimes.  Trace is in bed by 6:30 and that makes for a long evening all by myself when Peyton is at friends or dance.  I can't image that everyday - I'm just not that type of person.  So we are moving closer to family and friends. 

I was laid off from my job of 17 years in March.  This was sort of a surprise, but I sort of knew it could be coming too.  I had a really hard time with not having a job at first.  I felt inadequate and worthless.  Like I couldn't provide for my family.  I have now decided it wasn't such a bad thing after all.  I'm not really sure how I worked full time, managed Trace's care and all the other regular mom and homemaker duties.  Guess that's why I was so forgetful, to the point of embarrassment sometimes.  I have decided to take this time and really focus on Trace's care and have volunteered to help with the UMDF.  It has really been a blessing.  There's a reason for everything and this was just part of a bigger plan.  Loving my time with my little Mister!

We found out last week that Trace has immune deficiency.  He can't and hasn't been able to fight an infection without being admitted to the hospital.  As Dr. P said to me "he's so lucky he has not had a severe infection such as pneumonia".  I do feel so lucky in that aspect.  However, it's still a big let down.  Dr. P doesn't know why his labs were good in November, but had non-existenet titers this month.  She expressed her concern and we chose to do another pneumovax shot to try and get them up.  He had one over a year ago and it should of lastest longer - like 5 years.  Nothing goes as it should when Mito is in the picture though.  He did good with the shot and we're hoping to see improvement with it.  If not IVIG is another option to keep him healthy.

We met with the pediatric neurologist Dr. S last week to discuss placing a Vagus Nerve Stimulator (VNS) in Trace.  He said Trace is a good candidate.  Trace's seizures do not just affect one part of his brain.  If that was the case he could remove that part and Trace could be seizure free.  Since Trace is taking 7 doses of 3 seizure medications per day and is still seeing seizure progression this is our best option.  He also told us Trace was not too small.  He said he can place the device under his pectoral muscle so that it doesn't protrude too much from his body and bother him.  This was a concern of Dr. K's due to Trace's severe OCD.  We were told to have a contingency plan in case Trace completly flips out and was constantly tugging on it. Dr. S told us there are no guarantees with VNS - it can greatly improve seizure activity, improve it slightly or not at all.  I would be so grateful for even the slightest improvement.   

We are still discussing VNS with Dr. P and Dr. K.  They have both expressed concern with infection.  Due to what we found out last week, we are waiting to see if the pneumovax brings up his titer levels.  Dr. P and Dr. K have sort of approved, pending the new labs.  Dr. P will run either IVIG or IV antibiotics during the procedure to help prevent any infection.  We meet with his epileptologist Dr. V in 3 weeks to discuss everything further with her. 

Some other things going on - Peyton was a mentor at Special Olympics.  I'm so proud of her for volunteering her time for others.  It was a weekend event starting with a send off parade at school, dinner and dance that evening and events the next day.  She said it was so fun.  Her student was a beautiful sweet girl.  Peyton said she could relate to her easily because she was a lot like Trace.  Loves the IPad, movies and had some of the same issues.  Peyton was requested by the girls parents to be her mentor again next year.  Proud mommy moment!

Another proud mommy moment - Trace has began to use a fork to feed himself.  Trace doesn't like eating and only eats certain foods.  He doesn't self feed much yet and only uses his fingers.  He doesn't eat at the table much either.  He may be 5 years old and this usually happens when children are about 2.  It doesn't make it any less spectacular though.  It's all about the little things right?  Maybe we can try to potty train this summer??  This is an amazing achievement for my little Mister! 

We also attended the UMDF Family Day at Morgan's Wonderland a couple of weekends ago.  It was so much fun as usual and we met lots of new families.  Trace had an amazing time but was so tired by noon.  So we went on one last train ride before leaving.  Here are some pictures! 

I'd like to ask you to pray for some of our Mito friends.  They are very sick and have been in the hospital this week.  Please pray for them to quickly get better and be able to return home to their families.  It breaks my heart to see these children in so much pain, they already go through too much.  Thank you!

Hope, Love, Courage &Faith,