Our Story on 9NEWS

9NEWS in Colorado where we live did a story on our family and Exceptional Family TV, it aired last night :)

Here is a link to watch the video if you are interested

I wanted to post a quick update from my Vlog last week.
We went back to the doctor today and found out that we will not be having a baby right now. I am now officially waiting to miscarry.
I thank everyone for their kind words and prayers this past week, they really do mean more than you know.
We will hold fast to our faith in God and our family during this time. We will continue to remember all the blessings we have in our life right now.
I was reminded today of a song that has always helped me through hard times.

VLOG-Update

The story of the Butterfly

A man found a cocoon of a butterfly.
One day a small opening appeared.
He sat and watched the butterfly for several hours
as it struggled to squeeze its body through the tiny hole.
Then it stopped, as if it couldn't go further.

So the man decided to help the butterfly.
He took a pair of scissors and
snipped off the remaining bits of cocoon.
The butterfly emerged easily but
it had a swollen body and shriveled wings.

The man continued to watch it,
expecting that any minute the wings would enlarge
and expand enough to support the body,
Neither happened!
In fact the butterfly spent the rest of its life
crawling around.
It was never able to fly.

What the man in his kindness
and haste did not understand:
The restricting cocoon and the struggle
required by the butterfly to get through the opening
was a way of forcing the fluid from the body
into the wings so that it would be ready
for flight once that was achieved.

Sometimes struggles are exactly
what we need in our lives.
Going through life with no obstacles would cripple us.
We will not be as strong as we could have been
and we would never fly.

So have a nice day and struggle a little and teach well.

Staying Sane and Feeling Good (TIPS)

Keep you nails painted.  I know this can be hard because polish chips and wears, and you end up looking like a 14 year old girl, but I have found something that works wonders. It is called Shellac http://www.cnd.com/Consumer.aspx

Learn the side swept bun. I do this as least twice a week, when I don’t have time to shower before an appointment or just don’t feel like “getting ready” this is so easy but still cute. Check out directions on how to do this on a friend of mines site http://saraduffeyartistry.com/beautycentral.aspx

Dress nice at least once a week. Even if it is just to take your child to a therapy appointment, looking cute always makes me feel confident, and I just feel happier.

Wear perfume. If you or your child can’t handle the smells, find a really gentle mist. Just smell good!  I found a perfume I love that is really light, most people think its my soap. I FREAKED OUT when I found out they discontinued it. Thank goodness we have Ebay!

Get a pair of shape-ups. They may not be the cutest shoe but they sure do keep a mom’s back, hips, knees from hurting. I love my new pair. I wear my really long jeans with them so you can’t even tell and even if you could they are totally worth it.

Read books.  Find something that interests you, even if you can only read 5 or 10 pages a day. It is fun to get wrapped up in something that is outside of your world for a while.

Workout. Even if you can only take a 10 minute walk, try to do it everyday. I have found I cope with life in general so much better when I am working out on a regular basis.  I like to lift weights because it builds muscle and that helps out with having to carry Zach so much.

Try to get at least 2 massages a year. I am really bad at this but I recommend it to myself all the time. Every time I get a massage I say “I am going to get one once a month from now on” ... that doesn’t end up happening, but it would be wonderful if it did.

Burn natural soy candles. I like to burn them all over the house, but if that’s too much, get at least one for your bedroom. It is so nice to have your house smell yummy. Smell is our strongest sense tied to memory. (I still hate the smell of the soap they have at Children’s Hospital).

Have adult conversation. At least once a day, even if you have to call someone or chat online. I thank God for the internet for the times Nathan is out of town for work.

Hang out with friends. At least once a month, even if they have to come over after your kiddos are asleep. If we can’t find a babysitter we have friends come to our house so that Zach can still go to bed and we can keep hanging out.

Have a glass of wine. If you don’t like wine, drink something (even juice) from a wine glass! It just makes you feel good, not drinking from a kiddie cup. A friend of mine got me a handmade wine glass for my 30th Bday!

Get your Vitamin D. When the weather is nice, sit in the sun for 10-15 mins a day.  When it starts to get too cold outside, I like to sit on the floor by my sliding glass door and feel the warmth from the sun.

Jeans. Own one pair of jeans you think look AMAZING on you!

Take a nap. Even if its only 10-15 mins it will help if you are struggling through the day.

Be healthy but cheat. As a general rule with food, be healthy, but take one day a week or one thing a day that you eat because you love it.

Laugh. As much as you can laugh with those in your life. Laughing burns calories and makes you feel happy.

"The days are long, but the years are short." Always remember if you are having a bad day that everything passes and you will look back and wonder how it all went by so fast.

My 30th-Best Yet. We are all created to be different.

In our house we like to call it your birthday weekend, where you get to have a whole weekend to celebrate your birthday.

My 30th birthday weekend started like this, Saturday morning I got to sleep in and when I got up and came downstairs there were flower and gifts waiting for me. From there Nathan, Zachary and I went to Zach’s friends bday party. We stayed there for about an hour then I got dropped off at a spa to have a manicure and pedicure, which was wonderful by the way. I was picked up from there and brought home to pick up my gift cards to go shopping for as long as I wanted! After shopping for a few hours I came home and we got ready to leave for our close friends annual Jimmy Buffett party. It was a full day and I loved it.

Sunday Nathan arranged for me to go with my best friend, to look at her wedding photos (she just got married this summer), I knew I needed to be back by 2:45pm or so to get to my parents house by 3pm to have dinner and cake to celebrate mine and my brothers birthdays as a family. When I got home around 2:45 it all made sense why Nathan had been acting so strange and my house was so clean this weekend, my house was filled with all my family and friends!!!

Nathan didn’t miss a thing and with help from my family and friends every detail was covered. There was my favorite food; burritos and they called them REN-I-TOS. Chocolate Martinis, called CHOC-NAY-TINIS. My favorite wines that he made labels for and called REN-EE-SLING. Chips and salsa from Chili’s. Snack-mix, and the most AMAZING cake ever made by my friend Jess.

There were poster boards filled with pictures of me and timelines about what happened the year I was born. People took a quiz about me, wrote funny memories of me and made silly comments about pictures of me. Nathan also created a “mixed tape”/play-list for my iPod, it was 2 of the top songs every year from 1980-now. It was so much fun to hear the evolution of music. Nathan also arranged for everyone to get me the gifts I really wanted!!! I absolutely loved my weekend it was amazing and I could not have planned it better.

This weekend really did open my eyes to so much. I got to see how loved I am, first by my husband, then my family, and all of my friends. One of the things that jumped out at me about my party was, as I have gotten older I have come to realize that a small quality group of friends means so much more than being popular. I may have not had 100’s of people at my party but all the people that mean something to me (and could make it) where there and that means more to me than any large number of people could.

I also learned that we all see our journey through life differently. One of the things Nathan had people do was write down memories about me, they then read them out loud to me. It was interesting to see how people saw me and what memories stuck with them. I couldn’t even remember some of the things people wrote about me, which opened my eyes to how differently we all see life.

We were all created to be uniquely different in so many ways; none of us are the same. The world may look at our kiddos and see something visibly different but they really are no different than you or I. Just because people may look, move, sound or act like each other doesn’t mean they are, we were all made to bring praise, glory and honor to God in a way that the person next to us never could. We need to remember and know this to be true about our children weather or not they can walk, talk or feed themselves. Our children bring praise, glory, honor and joy to others and to God in ways we will never fully understand.

Extreme Home Makeover...for EVERYONE!!!

  

There are so many overwhelming things when you are raising a child with special needs, the actual weight of Zach is one of my biggest concerns.

We bought our house a year after getting married when we thought it would just be us for awhile and we thought it would be perfect for a small family when we decided to start one. A month later I found out I was pregnant. We thought this little house would be perfect; it had 3 bedrooms, plenty of room for lots of toys and a big yard for our coming little one to run around.   

It all seemed perfect. We got a great deal on the house (or so we thought before falling house prices the last few years) and we were now ready and starting our family, but life can flip on you in a moment. I now see my house as a burden. I see it as an obstacle for Zach. Our little house and all its levels makes for small spaces for Zach to move around and explore. He has to be carried from floor to floor, and each floor is a small space so moving things around like walkers and wheelchairs just isn’t effective. 

I pray he will one day walk and be able to get up and down stairs, but for now he continues to get bigger and our house is not losing any of its 38 stairs (20 inside, 18 outside) to maneuver in/out and around our house. 

It’s pretty amazing how life works. The way you think you are making plans for the future, and God decides He has a different way, a better way, a way you may never understand.   

You start to realize how even the things you never thought about before, like stairs, can make every thing ten times harder. How liking your neighbors just doesn’t matter when your child only has one small room they can get around in your home. How having a big yard doesn’t matter when your child can’t run in it. How you never thought God would need to work on your character in this way. How you didn’t realize you needed to be ready for change in every area of your life. Even the small things that didn’t seem to matter before, like the floor plan of a house, will need to change.

It seems so simple. It’s just a house, but what are we supposed to do now? What is best for our family? How will we afford to change it? Life comes up with so many questions, some of them easy and some of them hard. Whatever life throws at you it’s up to you to make the best of it. I have figured out how to make the best of this one…Extreme Home Makeover, for everyone!!!

Nathan's (part 1) blog about our trip to Palo Alto, CA to discuss Infantile Spasms/West Syndrome

Renee and I were invited to participate in a parent advisory board/panel on Infantile Spasms (IS). It is a rare disease and according to InfantileSpasmsInfo.Org it’s “an uncommon epilepsy syndrome that typically begins in infancy. Also known as West syndrome, it was first characterized by Dr. William James West in the mid-19th century as he sought help for his own affected child. Infantile spasms is considered to be a “catastrophic childhood epilepsy” due to the difficulty in controlling its symptoms and the developmental problems that can occur as a result of IS. Infantile Spasms typically begins in the first 4 to 8 months of life and is characterized by flexion (bending and jerking) of the trunk (torso) or neck and extremities (arms and legs). An episode can range from a subtle head jerk to a flexion that lasts for a few seconds. Most often, the spasms occur in clusters.”

The Parent Advisory Board Meeting was organized and funded by Questcor Pharmaceuticals, the makers of Acthar gel (ACTH), which has been considered the “gold standard” of treatment in the child neurology community since the 1950s. I clearly remember Zachary’s neurologist and the head of the neurology department at Children’s Hospital Denver telling me personally about the “gold standard” treatment consideration for ACTH when Zachary was in the hospital for his seizures.

The discussion and parental input focused on several issues - raising awareness for Infantile Spasms, considered a Rare Disease; creating a community for those who have a child with IS or are considered IS “graduates”, those whom medication helped stop the IS; spreading education and information about IS to parents, pediatricians, and child neurologists; giving back to the IS community; and discussing creative efforts surrounding Infantile Spasms Awareness Week in October.

The panel took place over the weekend of July 31 and August 1 in Palo Alto, CA. There were a total of eight families in attendance. The first evening, we all went out to a dinner to have a casual “meet & greet” experience. Family friends (and fellow Coloradoans) Matt and Tamara Cochran (Episode 10 & Episode 11) were in attendance as well as Chris and Megan Daniel who we met at the FDA hearing.

On Sunday, the formal panel took place, opening up with each family sharing their particular story and journey with Infantile Spasms. It was very interesting to hear each family’s story as each shared a common tale of what they experienced with IS exhibiting itself in their child – a quick spastic movement, bobbing of the head, jerk of the arms/legs, body moving in jack-knife fashion – and these movements happening in succession for a time, called clusters in the IS community.

What surprised me was the vast difference in outcome with the families who had success with IS medication stopping the seizures. Several families’ children developed normally and would be considered “typical” on all levels of development today. Others had underlining conditions such as cerebral palsy (like Zachary), or other brain issues.

Although IS was first medically chronicled in the 1800s, there still is very little information on it. As a rare disease, it affects about 1 out of every 3,200-3,500 children.

On average (45 out of 50 children affected) spasms appear for the first time between three-months to a year-old. According to the InfantileSpasmsInfo.org website, about 70% of IS cases are caused or linked by something to do with the Central Nervous System, brain development abnormalities, or genetic abnormalities.

For Zachary, the underlining cause was the severe brain damage (cerebral palsy) that occurred around his difficult birth.

But in 30% of cases, there is no known cause, and these children have the greatest odds of living a developmentally normal life.

Regardless of the cause, once diagnosed with IS, the goal of any neurologist is to get the seizures stopped as soon as possible. With each “cluster” of seizures, the child is experiencing some additional damage to their brain.

Our personal journey with IS, brought us to a neurologist who was very good and very professional in his care of Zachary. The neurologist wanted to take an aggressive approach to get them stopped immediately, but also be safe in medicating our child. We started on a three-week stint of Vigabatrin/Sabril (recently approved by FDA, but at the time Zach took it, 2007, it had to be purchased through Canada). This did nothing for his seizures. Our neurologist advised us of the “gold standard” for IS treatment, an injectable hormone called ACTH or Acthar gel, as labeled by Questcor Pharmaceuticals. We were advised of the side affects – significant weight gain, possible elevated blood pressure, and I think they told us diabetes too, but our neurologist assured us Zachary would be strictly monitored during treatment to make sure he would be safe.

It was a daily, one-shot injection. After the sixth one, Zachary’s seizures stopped completely. That was Nov. 6, 2007. To this day, he remains seizure free.

After the family stories, the panel switched gears to discuss the history of Questcor as a company, their commitment to the IS community in raising awareness, and ideas for Infantile Spasms Awareness week coming October 11-17, 2010, and for future years.

…to be continued…

SEARCHING

I have been searching for a way,
A way to have a voice.
A way to be a voice;
A way to hear his voice.

I have been searching for a way to figure out what it is I am feeling.
To figure out if I am happy, if I am sad or if I just am.

I have been searching for a way to be the woman I want to be,
The wife I know I can be,
To be the mom he deserves me to be.

I have been searching for a way to be a friend again,
One who laughs and loves with all her heart.

I have been searching for a way to know myself better,
To love who I am and to learn from my past.

I have been searching for people who know and understand things I go through everyday,
people who understand the loss of dreams, yet always search for hope.

I have found hope.

I have found it through the people who open their lives to us,
Through the families who have become the voice for their children.

I have found it through the strength I see in mothers who never leave their child’s side; Through the friends who are always there no matter what you’re going through.

Through the people who have experienced tragedy and have come out on the other side filled with hope and love.

I have found hope through all of you,
And I thank you so much for the love and support everyday.

Vlog-Zachary's Lying

So I did my 1st Vlog.  It's about Zachary and even though he is functionally non-verbal at this point, he can still lie to me.

Check it out at http://www.exceptionalfamilytv.com/blogs/producers/nathan/renees-vlog-zacharys-non-verbal-lying

Excuses

I don’t know what to do with him?
I am just so tired.
He works so hard all the time, I just want to give him a break.
My back hurts from carrying him.
He can’t just go run and play so I have to do everything with him.

These are just a few of the excuses that run through my mind when I know I should be working with or playing with Zach but I’m not. 

I struggle all the time with guilt.  So the other night when Nathan brought up that he noticed I wasn’t working with Zach like I used to, it hit me like a Mack truck.  It is really hard to hear things from other people that you know you should be doing in the first place.  I knew that I had not been spending as much time as I used to with Zach, that I had just become complacent and lazy. 

Having children can be a tough job already, but when you have a child who you want to let run around and play at the park and they can’t, it can be even harder.   You have to do EVERYTHING with them.  I have to play in the sand, go down the slide, sit on the swing and run around while holding him if I want him to enjoy what going to the park is supposed to offer. 

I am selfish; I know this, but having to do all the activities a 3-year-old likes to do at almost 30-years-old is exhausting.  When I get tired or overwhelmed I start to complain or I just shut down.   I think this is what Nathan was talking about when he brought it up,  I had just shut down.  I had gotten so tired and overwhelmed with just the idea of what it takes to play with my little man that I had stopped paying attention.  I just stopped trying.   I still spent time with Zach and was always around, but I was not interacting the way I should.  I was not helping him to learn and be the 3-year-old I know he is capable of being. 

Even if being reminded of something is painful sometimes it is just necessary to allow you to wake up and change your behavior.  I know that I will have many times in my life where I will need to be reminded again and it will be just as painful but I am grateful that I have a husband I know only wants me to be the best women, wife and mommy I can be.

Who is Really in Control

It still amazes me how two people who are so different can get married and really make it work the way Nathan and I have.

Nathan LOVES being outdoors and being active.  I LOVE just hanging out indoors and doing nothing.

This past week we went on an 8-day vacation (thanks to Nathan’s parents) in Estes Park, CO.  We hiked, shopped, tasted wine, ate yummy food, fished, hiked some more, shopped some more, drove through Rocky Mountain National Park and had a little bit of time to just hang out.

Something about me (everyone who knows me is aware of this) is that I have a very abnormal FEAR, FEAR, FEAR of bears and mountain lions.  This makes hiking or camping in the woods very difficult, if not impossible with me.  Nathan and I have been married for over 5 years and together for over 6 and we have never been camping together, something Nathan LOVES to do. 

I am amazed at how God works on me every chance He gets and shows me that He is in control, not me.  When I am forced out of my comfort zone, He always shows me that I can trust Him because He is in control.

I prayed for days, if not weeks, before the trip that I would feel a peace and not have fear while we were there.  I was blown away there was not one moment of overwhelming fear. I will not say I did not have moments of worry, but I never had a panic moment that I was expecting to have. 

This made me think about our life in general - no matter what happens or where I am, I am not the one in control.  I feel so blessed to have reached a point where I do feel a peace in most areas of my life.  I would have NEVER thought after getting Zach’s diagnosis that this was possible.  I never thought I would be able to say having a child with special needs really has been a blessing in ways hard to put into words. 

I would never wish the struggle Zach will have in his life on anyone but then again who am I to say that his or our struggle is any more than the girl who has a hard time making friends, or the single person who feels lonely everyday, or the child with cancer who is cured after 2 years of treatment never to look back, or the widow who feels sad every time she sits down for dinner with no one to talk to, or the teen who started doing drugs to be cool and now can’t stop.  Who am I to say that God did not ALWAYS know exactly what Zach’s brain would look like and every struggle that his body would have to move in a “typical” way. 

As hard as life can be I have no doubt in my mind that where I am at any given moment is where I am supposed to be, hard or easy, happy or sad.  My worries for Zach and what our life will look like in the future will always be there, but I am reminded at every turn that there is always a light at the end of the tunnel or a positive that will come from a negative, even if we don’t want to see it in the moment, it will come. 

Knowing good can come from any situation has nothing to do with understanding why. I believe it comes from trust that Someone knows much better than I do what is good for me in the long run.  We are all here to help each other. this life is not about us; it is about showing a love everyone longs for.