73. 402. One of the best nights ever!

Many things lead to the moment I need to document:

1. First and foremost, the feeling when your brother and sister-in-law (and parents) give you one of the most amazing birthday gifts ever. That feeling of being speechless when you seldom find yourself without words.

2. The feeling when you get to take your son, who is one of your best friends and loves the game of basketball at least as much as you. The feeling you get as you watch him Snapchat all of his friends about where he is and what he is doing.

3. Then there is the feeling of being present when Curry hits 10 3’s for a total of 402 in the regular season. As each shot left his hands there was a slight breath in as everyone waited through the flight of the ball. With each 3 made the place got a little louder and excitement grew as we knew he was going to hit 400.

4. And then the indescribable adrenaline rush at witnessing the Warriors go 73-9 for the season, making history, surpassing the Bulls team that I watched (on TV) hit 72 back in 95-96.

Top it all off with this –

Nick is a Heat fan and very specifically NOT a Warriors fan. But you see, Warriors fan or not, any true basketball fan knew that history was on the line last night. He agreed to wear the t-shirt all fans received last night and he cheered his heart out. (It would have been impossible not to in that place!) But he made it known he would never wear the shirt again so we agreed he would give it to Greg. As we left Oracle I noticed Nick looking around closely at seats. I asked what he was doing. He responded that he was looking for anyone that was not taking their shirt. I assumed that he was looking for a shirt to take back to a friend or something. As we drove home I thought of it and asked him why he was looking for another shirt.

He responded, “For me.”

I said, “But you will never wear it.”

He said, “I want to hang it on my wall for the memory.”

Without hesitation I replied, “You can have mine.” The happiness in my heart over a perfect evening was overflowing.

Where were you for 73? I was at Oracle.

“Warrrrrriors, Warrrrrriors, Warrrrrriors, Warrrrrriors…”

Gotta get that merit badge!!

So, Nick has been one 20 mile hike from earning his hiking merit badge. This week I got tired of waiting for it to be completed and took matters into my own hands. Nick and I made plans to go to Feather Falls today. The hike to the falls is 5 miles one way. That meant we would have to hike two complete trips to hit 20 miles. It was a long day but we did it. We did a little exploring and took in the beauty before us making our total time about 6 hrs and 40 min. Not bad.

Nick and I both are terrified of snakes so the little one that slithered right through Nick’s feet woke us up! And I hated the moment that another hiker warned us of the rattle snake ahead on the trail. But thankfully we never saw the rattler although we saw about 1000 newts!

The day was pretty perfect and we got some beautiful pics…

Not going to lie – 20 miles hurts and I’m nervous for how bad it will be in the morning. However, I would not trade the opportunity to have accomplished this with my boy for anything! We had hours to just talk and laugh together!

Priceless.

A birthday for the books!

Literally. My sister got me one of the most touching, wonderful, amazing gifts ever. She had my blog printed into books. My blog is my diary – sometimes silly, simple thoughts, but sometimes it records my innermost thoughts. To have those entries in book form means more than I can say. Thank you Merilynn!!

The next totally awesome gift came from my friends, Jo and Sarah Leigh. They made me Minion cupcakes – aren’t they amazing??

Greg joined me for lunch, my awesome friend Melanie brought me pie at work, and then Greg and the boys took me to dinner. On top of that many countless friends took time to wish me a great day and I was feeling the love.

Thank you everyone!!

You’re a survivor, it’s written all over your body.

It it is a story that most people are at least somewhat familiar with. Almost 16 years ago Nick was born with a congenital heart defect. His first open-heart surgery was when he was 9 months old and his second was when he was 9 years old. This last June he had another pulmonary valve replacement that amazingly was done without the need to crack him open again and had a mere week’s recovery. That is the condensed Cliffs Notes version of a story that could fill pages.

Another version could be told through pictures and we have many from each surgery. Some will just bring you to your knees. Earlier this year I met Jessica – she is amazing, so talented in everything she does – one of those things being photography. She approached me with an interesting idea – she had my full attention.

A photo

A special photo

One that would tell a story

With no words

I had never thought of it

There was a time I may not have been ready

There was a time when Nick wouldn’t have been willing

Times have changed

6 Year Diaversary

You may be thinking, “Diaversary”, what is that?

That is the anniversary of the day that Type 1 Diabetics were diagnosed.

Now is where you think, “Why would you mark, note or (Heaven forbid) celebrate that day?”

The answer is simple, we don’t celebrate the Diabetes. We celebrate, honor and acknowledge Jared. We celebrate what an amazing young man he is and continues to be. We honor him for the different life he has to live while so many around him are so “normal”. We use it to acknowledge all that he has to go through constantly, 24 hours/day, 7 days/week. There is no rest, break or reprieve from Type 1 Diabetes.

First let’s address the most common questions/comments we get about Type 1 Diabetes-

Was he born with it? No, Jared was not born with Type 1.

Is there a cure? No, not yet.

Did he eat too much sugar when he was younger? No, he didn’t get it from eating too much sugar.

Is it the bad kind? Hmmmm. A few years ago we were watching a show where a boy Jared’s age was very overweight, sedentary and ate poorly. He was Pre-Diabetic (meaning Type 2). The boy commendably lost 25 lbs, became active and was eating much healthier. At that point he was no longer Diabetic. Jared turned to me with tears in his eyes and asked, “He doesn’t have Diabetes anymore?” I guess when faced with a question like that from a young child, yes, it is the bad kind.

Does he have to poke his fingers? Yes, he has to check his blood sugar at least 7 times daily.

What is he able to eat? He can eat anything, yes, even sugar. No, sugar-free is not better.

It is not about the sugar, it is about the carbohydrates. Carbohydrates are sugar.

No, he won’t grow out of it.

We know you mean well but the comment, “If there were any child to get it (any parents to deal with it) you are the best ones we know of” isn’t very comforting.

Yes, I still get up every night to test him. There are nights I get up several times. There is a very real fear of “Dead in Bed Syndrome” where a diabetic drops so low during the night that they fall unconscious and no one knows until it is too late.

For 6 years this has been Jared’s world. Making choices based on what will be best for trying to maintain decent blood sugar numbers and trying to stay within a healthy range of carbohydrate intake per meal/per day. Jared, Greg, and I can often look at food and guess the carbohydrate count. People are often amazed but it is a skill I wish we didn’t need. We carry a food scale with us. We carry testing supplies. We carry candy – straight sugar. We are often the ones bugging people at gatherings saying, “When are you planning on eating” “What are you going to be serving?” and often “Oh, pizza? Can you tell me where you are getting it from?”

Jared does not eat a Diabetic diet and he is not controlled by the necessity (or inability) to eat certain things. Everyone should eat like Jared does. Everyone should eat healthier bread/grains and more protein and veggies. Everyone should limit themselves to 1-2 cookies, 1 cupcake or 1 serving of ice cream. He makes those excellent choices and is healthier because of it.

So today we celebrate. We celebrate 6 years – 6 years of our family and especially Jared living life to the fullest, not letting Diabetes stop him or even slow him down. 6 years of being brave, mature, courageous, thoughtful, appreciative, selfless and willing to explain his condition to others. 6 years of having far fewer break down moments than I would have in his shoes. 6 years of being Awesome!

Changed Forever

Sometimes in life we encounter events and/or people who have a big impact on us and change our lives forever. This is one of those stories…

You all know Nick. He is 15, a sophomore in high school and loves to play basketball. On any given day you can find Nick wearing a pair of Nike shorts, a Nike t-shirt and Nike shoes. It is his go-to outfit all 4 seasons. Wearing jeans is almost painful for him and he has been heard saying, “I will never wear a pair of Vans.” (Trust me, this will be important later.) Nick is a sensitive soul who is friends with everyone. He doesn’t care if you are the school’s star football player, the brain getting straight A’s in college level classes or an oddball kid just trying to find his way. In fact, Nick often seems to go out of his way to talk to the oddball in an effort to let them know they have a friend. He is very confident in his own skin and is not afraid of anything, well, except maybe snakes, and who can blame him?

At the beginning of August, Nick met Zack at a church youth swim party. Zack had just moved to Chico and Nick was excited about another friend his age. Nick didn’t know it then but Zack was just 2 weeks younger. They had several similar interests, the all-important basketball being one of them, and Nick came home describing him as happy and fun and looked forward to “hanging out.” Time began moving quickly as school started soon after and days seem to pass in the blink of an eye. Nick and Zack did not get together but in Nick’s mind that was ok, because they had lots of time to do that.

What Nick didn’t know was that Zack’s smile and fun personality were hiding the fact that he was battling depression on the inside. Sadly, on the morning of August 27, 2014, he lost that battle and Zack took his own life. I called Nick as he walked home for lunch that day. I told him that his new friend had died that morning. He was in shock and immediately responded with common thoughts of, “I should have done more,” “I should have called him,” “I could have made a difference,” and “Maybe I could have stopped this.” The next several days were spent discussing suicide and how Nick could not logically blame himself. But as we know, with suicide, logic doesn’t ring out, not with the victim and not with all those that are left behind.

Over the next week and a half Greg and I spent time with the family and struggled to find something to do, some way we could help them through this unimaginable time. We prayed for them constantly and still do. The funeral was scheduled for Saturday, September 6. I thought I would have to talk Nick into going but as soon as he heard the mention of Zack’s funeral he stated, “I’m going.” I hoped going to the funeral would give him some closure by allowing him to see how many people loved this young man.

Zack’s funeral was held on a beautiful day. It was humbling to see how many people came to say goodbye because they loved him so much. These people had been touched by Zack and his family – some had known him his whole life, some through school or church, and some were like Nick who hadn’t known him for long but were touched just the same. Did Zack know how many people loved him? Did he know the impact he had on others? If he did, would it have been enough? Family and friends had a balloon release before the service and it was beautiful.

After the service Nick finally met Zack’s mom, Misty. Nick hugged Misty and my heart broke as I watched a mother dealing with the loss of her son and then my son trying to deal with the loss of a friend – completely new territory for him. The meeting of such sadness was something I will never forget. Later that day Nick said something profound, “Mom, we are going to need to go visit Misty.” My son learned so much that day. He learned a little about the sadness and grief one feels when they lose someone that is important to them, someone they love. He learned a little more about empathy as he wanted/wants to try to be there for Misty. I also think he had a little glimpse at the fact that we can work through trials and sadness and that maybe it will be a little easier if we do it together, if we let others in to help us carry the load.

Since that day we have tried to visit Misty and the family or at least stay in contact. They too are touching our lives daily and it is easy to see where Zack got it. One visit, Misty gave Nick some precious gifts. One was a pair of Zack’s Vans which he loved. Another was a new shirt Zack had worn on the first day of school. Nick accepted these gifts like the treasures they are and that evening he planned to wear them to school the next day. “Nick, it is going to be 100 degrees tomorrow.” No matter – he was on a mission, a mission to honor a wonderful young man and a special friend.

Remember my statement above about Vans??

Zack, you may be right, maybe no one can outshine you but Nick is going to give you a run for your money. Not in a competitive way but with a desire to make you proud, to make sure your spirit lives on and continues to touch others. I know someday there will be a grand reunion, maybe knuckles or a chest bump and a, “Hey, I missed you!”

Hug those you love today. Tell them how important they are. And finally, “Everyone you meet is fighting a battle you know nothing about, be kind.”

Pulmonary Valve Replacement #2

We arrived at the hospital at 6:00 a.m. Checked in and went up to the ICU where they started all pre-op work. Vitals, get comfy, talk to Dr., place IV – WAIT, what!?!? I have to explain that Nick hates needles and the thought of an IV or a blood draw was very upsetting to him. We reassured him that they would use numbing cream and it would be quick and relatively painless. What is it about the medical field that they love to make parents out to be liars? The IV placement was pretty traumatic and painful but the pain subsided and since it seemed to flush they left it. Problem was it wasn’t drawing blood so they had to do another poke for a blood draw – more anguish.

At 8:45 we walked up to the Cath Lab where we talked to the head doctor and then they had Nick lay down with the intent to give him a little Versed to calm his nerves. At that point they realized that the IV was not properly placed and would have to be redone. Nick was less than happy about that so they just put the gas mask on him and in about 15 seconds he was out. We kissed him and left.

By 12:00 he was done and by 12:45 he was in recovery. They said he needed to stay laying flat for 6 hours which was most difficult during the first hour as he was waking up because he was flailing and trying to bend both legs to get comfortable. He was fully awake by 2:15 and he has been the perfect patient since then.

The doctor said the procedure went very well without incident. They placed a 17mm Melody valve. The valve comes from the jugular of a cow and it is sewn inside of a stent. This is a picture –

They would have rather placed a 20mm valve but they were limited by the current valve which was placed in 2008. It would only expand to allow the 17mm.
The following pictures are of the old valve and the new valve and show how much leakage there was before and what a difference there is now.

A normal person has a pressure reading in their right ventricle of around 20. Because of the blockage and the leakage Nick’s pressure was at 60, and that was without physical activity! Now he has a reading of 35. If they could have placed a larger valve we could have gotten a better number but that is still a lot of improvement.

The only bad thing is that because the valve is small because of current restrictions, he will not be eligible for another pulmonary valve via catheterization down the line when this one goes bad. At that time it will need to be done via open-heart again. But we are going to hope for 10-15 years before that is an issue.

Recovery is amazing. We hope to be released by mid-morning tomorrow and by next Tuesday he is free to resume all normal activity. Talk about being thankful! We are once again very touched by the love and concern of all our family and friends. Thank you so very much.

Cardiac Catheterization – Pulmonary Valve Replacement

All my life I have been becoming the woman I am now and likewise, I continue to grow into the woman I will become. The young girl I knew at 16 is long gone although remnants of her remain deep down. She has been transformed by many, many moments, some big and some small. One of those big and memorable moments was on January 15, 1999 at approximately 9:00 p.m. Nicholas Gregory Wright was born, all 8 lbs, 12 oz. of him. Another moment was approximately 13 hours later on January 16, when his heart condition was diagnosed. I will never forget how much I grew in the moment the doctor said, “We can’t estimate his life past his early 20’s”.

September 2, 1999 at approximately 1:30 p.m. and again on January 29, 2008 at approximately 9:00 a.m. were moments when I had to learn about additional strength inside me. On September 2 I handed a crying baby over to doctors and on January 29 I had to pry the grip of my 9 year old’s hands off me so that each time I could stand and watch them walk away with him. Those moments were of great and mighty prayer that the doctors’ hands would be guided, their minds alert and that we would get him back.

Here we are again. Nick needs a new pulmonary valve. We are scheduled for this Wednesday, June 11. It is not open-heart surgery this time and for that I am thankful but again I have to hand over my baby and pray that all will go well. The statement at the top of this blog is so true and applicable for both of my boys. They have both brought me growth and strength on so many levels yet it is through my love for them that you will find me at my weakest. So I will take my own advice – the stuff I say to Nick before a game – “Play strong! Show them what you’ve got! Confidence!”

I love you buddy…

(*Note – Nick no longer has an estimate placed on his life span. Medicine has and continues to advance at an amazing rate).

Nick’s artwork

Nick entered several art pieces in the Silver Dollar Fair this year. He was pretty happy with the results!

Disneyland 2014

Just playing a little catch up here. It has been a rough year!

We made a quick trip to Disneyland in March. We drove down on Saturday, March 15 and stayed the night with Greg’s niece Rachael and her family. On Sunday we drove into Anaheim and checked into our hotel. This time I decided to try and save money by staying a little farther from the park. Along with saving money we were able to get a room with a separate room with bunk beds for the boys and free breakfast each morning. The hotel was the Best Western Plus Raffles Inn & Suites. It is located on Harbor Blvd, about a 10 minute walk to the park. Right next door is the Toy Story Parking Lot so you can take the tram to/from the park if you want. Here are pictures of our room –

Quite sufficient for our needs.

For dinner that night we went to a restaurant I love – Fire and Ice! There are only 5 locations (2 in Massachusetts, 1 in Rhode Island, 1 in South Shore Lake Tahoe and 1 in Anaheim) so this was a treat! It is kind of like the Mongolian restaurants where they grill you food for you but there are so many other options – delicious!!

Then we had to go check out the Lego Store –

Monday was St. Patrick’s Day and our first day in the park.

Completely by luck an old and dear friend was driving through and stopped to see us –

Deanna and Karrie!!!

We got to eat lunch with them and enjoyed every minute.

Next we got Jared on his first big coaster – California Screamin!!

And then his second, and third, and well, you get the idea. He loved it!

We even got him on Tower of Terror which he loved, well, he liked, a little… 😉

Cars ride – several times we went on this ride through the single rider line to shorten the wait. We didn’t always ride together but we had no interest in waiting 90+ minutes! Here is Jared in a line que, alone, ready to get in a car.

And this year they finally got to go on the Rapids ride. I was the party pooper because I did not want to walk around soaked all day. ;(

Nick ended up being the one who got soaked with a wall of water.

The boys once again had a blast trading pins to collect their “souvenirs’ from the trip. One Disney Cast Member had a mystery pin – meaning you could trade for it but you wouldn’t know what it was until you committed. Nick went for it – SCORE!!!