To All of You

This is to all of the people who are working hard to take care of their bodies!

I saw all of you in the wellness center today and I admire all of you.  There's so many different types.  There are elderly there that are just trying to keep at it by moving.  I also notice that you are the most innovative.  You come up with your own routines and don't use the equipment the way it was intended, but that great that you're creative.  Also the overweight ones, I notice you too!  I'm proud of you for making a change!  You could be ignoring the fact that you need to exercise and lose weight, but your not.  You are in there sweating like everyone else.  The young boy that had a trainer and was learning how to life weights the proper way - amazing.

I like how I was riding bike and happened to finish the same time that they guy next to me did.  He was an older, black man with nothing in common other than exercise, yet we locked eyes as a props to your workout and enjoy your happy day.

I love how I have friends that have set accomplishments and are achieving them!  I never really thought of exercising as an achievement, but it is!  Props to Bridgette and Erin for losing all of that weight,  Laura for taking up running and taking on a 5K, Linsey for running after knee surgery and not giving up, and Brandy for teaching Zumba.  I know there's a lot more friends that have made goals and accomplished them and I don't mean to leave you out - I'm proud of you all!

To my amazing husband that looks so different in just a month!  WOW!  I can't believe how much better you feel and how much healthier you look.  It's crazy how you can get that muscular.

I've always had bigger thighs than what fits my body - from gymnastics as a kid.  It was the one thing that I didn't want to get bigger, and of course it did.  But it's just more muscle, so how can it be that bad.  I had to buy new jeans because my body is changing!

I know some of you are probably thinking that I'm skinny and how does this matter.  I have become better as a whole - mind, body, and spirit.  We believe in the Holy Trinity - and we also need to focus on our body trinity!  Working out is giving me more energy and a much better spirit.  I was on medication for years due to being bipolar.  I haven't taken it in 3 months.  Moving to Phoenixville, going off birth control, and exercising has made my head clear and realize that I'm not bipolar.  I just needed to be where I belonged.  My friend, Ellen, recently wrote on Facebook that if she knew that exercising was therapy, she would have started a long time ago.  I agree with that to some degree.  I tried exercising 2 years ago and it didn't work.  I wasn't in the right mind set or the right place.  So I wish I could have done it right a long time ago.  I was always worried that it was taking up too much time since I'm always needed, being a parent of a special needs and medically needed child.  But now, I'm empowered!

I beat 2 goals today!  I ran a mile in less than 9 minutes straight through and a cardio challenge that the Y posts for the month.  My goal is to outrun zombies for a 5K in Nov - and I can do this!

Thanks to the Y for having child care for my kid that can be hard to take care of - but you take on that challenge so I can improve myself!

Good luck to all of those that are taking that initiative to making a health change!  It's our health and lives - seize it!  I'm proud of you all!

Another Horrible Vaca

I don't know why I always insist on "getting away" when I know it doesn't work for our family unless we have a nurse and Olivia can stay in another room.

It started off great.  She behaved so well when we met up with friends and sat on the beach.  She was great the whole day.  The the evil bastards decided to come around as she falls asleep.  Between running her feed for the night and the multiple seizures, this momma is exhausted.

We decided to take our 2 night beach trip down to one.  I immediately contacted the nurse this morning to see if she could work.  Luckily she's still available.  I will get to sleep tonight.  It just sucks that I never get to have a vacation.  I know that God has a plan for us, but this really sucks!  I hate being face with a daily reminder that my daughter can die with any of these seizures that she has.  I knew becoming a mother would mean giving up a lot of things in order to raise her, but I had no idea that I would have to give so much!  I need a break!  I need to be able to go away with my husband and connect with him!

Well for now, I'll take that sleep tonight!  And of course a Lucy hug when she gets home!

Make A Wish Trip

We have recently found out that Make A Wish is taking us to Disney World.  We are over the moon with being able to go.  They have brought me to tears twice and we didn't even do the planning yet.  Olivia has no idea what's going on either.  We have been talking about Mickey a lot and she probably has noticed that, but she has no idea what is going to happen.  Even when we are there, she won't know until she sees Mickey.  It is so wonderful to have companies that want to help sick children.  With all of this being said, it puts everything into perspective of how dangerous my daughter's condition actually is.  This is what it states when you want to refer a child:

"A child with a life-threatening medical condition who has reached the age of 2½ and is younger than 18 at the time of referral is potentially eligible for a wish."

I decided to sign her up and at the time, I didn't really think she would get approved for the trip.  I had no idea that my daughter's condition is life-threatening.  I've been increasingly scared that she will experience SUDEP (sudden unexplained death from epilepsy) due to having many tonic clonics throughout every week.  She has trouble breathing during them too.  And yet I never considered her seizures to be life-threatening.  After you refer the child, they send paperwork over to the pediatrician to fill out.  We never see this paperwork.  I have no idea what is said on it and I'm extremely curious.  Every doctor has told us that she can't die from seizures (even though we know that isn't true).  Even though we get to take this wonderful trip, we are now fully aware that our daughter has a possible terminal condition.  I hope my daughter can live a long, happy life.  

They are coming on Tuesday to plan the whole trip.  This will be a wonderful gift to give to my child.  She deserves it!

Off to a Rough Start

I went into Liv's room to relieve the nurse this morning, only to find Liv sitting on the floor quietly.  That struck me as odd for a minute and I moved passed it when she reached for me to pick her up.  The nurse tells me that she had no fevers, no seizures, and slept well.  The three things that I love to hear.  But she was still quiet.  I know she doesn't talk, but she babbles and loudly, at that.  

She didn't let me out of her sight and wanted to sit with me the whole time.  She didn't want to watch Mickey Mouse or Sesame Street.  Again, I thought something was going on.  Those are the only two shows that she will watch in the morning.  This time, she wanted to watch It's Always Sunny in Philadelphia.  Yes I'm aware that it's not an appropriate show for a little kid, but she likes it and doesn't understand it.  I'm not really sure why she likes it but it's the only adult show she lets us watch.  

She started falling asleep for her nap at 8:30 am.  She usually doesn't fall asleep until 9.  She just laid on me and I cuddled her.  About 10 minutes later she started twitching.  I thought she was having a dream or a sleep seizure.  I look down and notice that it's a seizure with her eyes wide open.  It lasted about 1 minute and then 2 more followed.  I had to give her emergency meds today and it wasn't even 9 am.  I was worried what would come of the rest of the day.

The Diastat is usually potent and wipes her out for a long time, but not today.  She only napped for an hour and a half and woke up ready to go.  She became extremely attached to daddy and wouldn't let him out of her sight.  When he left for the bathroom, she screamed bloody murder.

After my migraine dissipated, I decided to go to the grocery store as planned.  I offered to take Liv with me.  I don't usually do that but I knew that if she didn't get out of the house, we would be in for it later.  So off we went.  I was so scared that I would be alone with her and need to give her emergency meds in the store.  She didn't have seizures, if fact, she had a blast.  I put her in the cart that has a car in the front.  She loved it.  She was still quiet but she did make herself at home by taking off her right shoe and sock.  She beeped the horn at least 100 times before leaving the store.

Then it was dinner, bath, and bed.  What started off to be a rough day, turned out to be ok.

Some People Just Don't Get It

My husband and I are feeling like we have to keep a lot of our decisions and information about Olivia to ourselves.  We are constantly being judged by what we do.  Not from people online, but people that we know.  The funny thing is that we never put our suggestions on parents because it's not appropriate for parents to tell other parents how to do things with their child.  I can't believe what some people say to us when they have no idea what it is like to raise a special needs child.  I really appreciate the people that look to us as if we are knowledgeable and are making the best decisions for our family.  I guess I don't know when I gave everyone a signal that I want to be ridiculed about the way I run my life and family.  My husband and I have harsh decisions to make weekly, life changing decisions.  No one is with us when that information is gathered and presented.  So how is it that people feel they have an educated decision in our lives?  Yes it's easy for everyone to say to just ignore the comments, but it's much easier said than done.  Remember, these comments are coming from people we know.  None of them have a special needs child or have any clue what it takes to raise one.  I just wish people would keep their rude thoughts to themselves.  Sorry for the rant but sometimes I have to let it out or I'll explode.  This was brought on by a comment made today while I was resting in between my daughter's grand mal seizures and needing emergency meds.  We are also hoping that we don't have to go to the hospital today.  I wish people would just take a minute and think before they talk.  I really didn't need the comment on what I should do with my daughter in the midst of chaos that's happening in the home.  I could see if this was a one time occurrence, but many people feel that they should have a say in our lives and they have no idea what is even happening at the time that they are saying it.  I need a vacation.  Sorry if the pictures on Facebook and the updates have offended anyone, I won't be posted them anymore!