Are You Wearing Your Jeans?

Rare Disease Day is TODAY February 28th. Not a lot of people may know the struggles of having a medical life day in & day out. This day is set aside for those that not only live with the medical world daily, but live with a rare disease that most others will never understand.

Our Jeremy has Sturge-Weber Syndrome and I've often spoke about SWS on my Blog. In doing so I hope that our family has helped shed some light on SWS and a little of what Jeremy lives with for the rest of his life. We know a few families with SWS who have a much different version of SWS & that is only one of the reasons it makes SWS unique. If you would like more information please go take a look at Sturge-Weber Foundation.org. We live with the unknown daily, but the point is we LIVE, we Laugh, we Love just like any other family.

Now we want to share some of our friends that we have met on our journey that also have a Rare Gene. They celebrate each new day as well.  We hope you may take the time today to reflect on those who may not be "normal" whatever that word means. Remember that they have a wonderful & great life that God gave them. That God made them just the way he wanted & in his eyes they are all beautiful.

Mom & Son who share a Rare Gene

Cup of Noody

Go check out our friends on Facebook to learn more

Love for Lily

Kaid's Krusaide

Kaid has a whole beautiful a photo album you can look through that showcases some wonderful children.

There are so many more children, teens, & adults with a rare gene. Take the time to get to know them on the inside not just on the outside. You will see the wonderful spirit that lives in each & everyone.

 

We're Okay With Rare

It just so happens that on Monday bright & early Jeremy heads in to Madigan for another laser surgery / eye exam under anesthesia. I have lost count now of how many laser treatments & eye exams he has had since our world changed when he was born in October 2000. I know some medical moms keep up with it all, I choose to celebrate that each procedure is over and move on to the next.

Sturge- Weber Syndrome is considered a Rare Disease, which just so happens to have it's own day of recognition on February 28th. The very first ever Rare Disease Day was started on February 29,2008 in Europe. Eventually the US caught up and now we recognize all those rare diseases around the globe as well. I hope by reading my Blog & getting to know our family you learn a little more about Sturge-Weber Syndrome then you knew before you logged on to the web. If your like me when Jeremy was born I had never heard of SWS. I had seen a young man around my college who had a PWS just like Jeremy has, but I had no idea what it meant. I thought it was just a birthmark. I had no idea that not very many people had SWS or how much it would truly impact our lives from that moment forward.

A little short paragraph that can get you started on your journey to learn more about SWS:
Sturge-Weber Syndrome is a rare-disease that affects less than 5,000 individuals every year. The predominant hallmarks are a port-wine birthmark over one or both eyes, glaucoma and seizure activity. Although not every individual has all three hallmarks most do. The range in severity and ability is unique to every individual: some are born blind or go blind, some have brain surgery to stop seizure activity and experience body and speech weakness as a result, some have low mental functioning while some have Master's and Doctoral degrees, some wear make-up to hide their birthmark while others wear the birthmark proudly. Just as every person is different so are Sturge-Weber patients.

Thank goodness we have Jeremy's pretty well controlled with his medications. We do the hospital & doctors like they are a normal activity . We are friends with other families who speak the medical language & don't think it's crazy when I cancel at the last minute because something came up with Jeremy. We are Okay with being "Rare", because we think that Jeremy is a one of a kind young man. His smile & laughter are infectious to all he is around. Those who take the time to get to know him & move past the outer appearance are blessed to have him in their lives. I won't count every doctor's appointment or surgery but I will take a moment to help spread the word about SWS. These amazing kids, teens, & adults are so strong that they deserve their own day. I hope you take the time to learn more & spread the word. Just because they may look different or have their own version of normal doesn't mean they are any less of a person or have any less love of their lives.

Jeremy's Journey 

The Sturge-Weber Foundation

Re-Capping the Week

It has just been another crazy busy week of kids, puppy training, & race training. My highlight of the week had to be my Tuesday workout with my old trainer at her new gym. I loved the extra push, the fun atmosphere and the two days of sore legs afterwards. Oh, how I want to join that gym now but must wait for my current gym membership to run out :0/ I didn't log all my miles that I had hoped so I just know my March 3rd Hot Chocolate 15k is going hurt. But I figure I can do it & just enjoy that feeling of accomplishment at the finish line. Who says it has to be painless during the process. Hopefully these next few months the crazy calms down & my training for my first half in June can get done. I am so excited to run the Seattle Rock n Roll in my blue- that some people think I'm nuts-haha But it'll be nice to mark it off the list 7 know what my body can accomplish.

Puppy training was in full swing all week. Balto is getting bigger and turned 13 weeks old. He is still got the sharpest teeth ever! He still misses potty outside some of the times. But he still is fun to play with most days. He worked hard at puppy class two night this week. He went to the bank & the mall for the first time. he rocked them both! But he has officially warn this lady out. I can now hoenstly say I know why the puppy raiser asked us to take him until he was older. Puppies are a ton of work. Thank goodness they are so cute.

Today found me waking up to Panzer our almost 4 year old Weimaraner puking non-stop. Heading to church went right out the window as worry set in that he could be seriously ill. Sure enough after a few hours at the Vet he is home feeling better but not before a diagnosis of pancreatitis. Between him & Balto have potty accidents all day I opened my first bottle of wine in months at dinner. Exhausted just doesn't cover it at this point. Thankfully Panzer seems to be on the mind tonight.

This afternoon during a rare moment of quiet in our home.

I sure hope this week looks better. I know we are swamped again with appointments & training. I can only pray that God let's it all go smoothly and that I get a little rest fit into the crazy.

The Best is Just Starting

 We Say it with Cake

 Beautiful job by my friend Ashley on my cake.

This past Friday on the 8th of February found me waking up and turning 40 years young. As I thought about the day and were all the time had gone I could actually say I was happier today then in my 20's or 30's. Those were some fun & memorable times but also years filled with abundant stress. My 20's found me wrapping up my college degree, marrying Paul, moving half way across the US to become an Army wife, & starting our family. The fun was great but the lack of sleep & my body tripling in size were not! No one warns you about the crazy that is motherhood. My mom tried, but until you experience it yourself you just can't begin to understand.
 
My 30's found me living in the Pacific Northwest with four small boys kissing my husband goodbye for year long or longer deployments to Iraq or Afghanistan multiple times. It found me grieving for lives lost to a War that is still going on today. It saw my children starting school & gaining their independence. It meant learning to care for Jeremy & all his special needs. Towards the end it also meant gaining some of my self back as my children are older and more independent.

My 40's find me in a healthy happy body I love and enjoy taking care of as much as possible. Gone are the days of eating whenever & whatever I could because the children needed me so much. No more chicken nuggets on the fly or spoonfuls of leftover mac & cheese while loading the dishwasher. I find that our home although very cramped at times with four growing boys is comfortable. It's were I love to spend time & always relish walking through the door after being gone for an extended time. I know longer stress if the laundry is piled up , or the floor doesn't get vacuumed daily. I find that Paul is home a little more this past year and that helps with my stress level going down. He encourages my running with my girlfriends as he likes having the " hott wife" with a wink he says this-haha I enjoy girls games nights more then nights out in town for drinks. I love doing hikes with the family or walking the dogs to the lake. Life is just a little more easy going then in our early days of marriage. So yes I am fine with turning 40 & have enjoyed a whole weekend of fun.

It started with getting my 6th tattoo on my left forearm. I know thanks to several remarks from cherished friends that they think I'm nuts for doing a tattoo . But I also know I love all 6 of mine and they all have special meaning. I do not regret a single one & no I do not think I am going to Hell for getting them. The bible says dust to dust folks- our bodies do not go with us to Heaven our souls go back to God. But that is a whole different conversation. Here is my  new ink, the picture just does not do it justice. In person the contrast of the shades of gray, black, & white just pop. I think it's beautiful. Plus it's a scripture I read a lot in times of crazy in my life, which can be often.

Next came a fun dinner with a couple of my dearest friends as well as a couple of new girlfriends.

 I was able to work in a run on Saturday so that I could eat my delicious cake on Saturday with the family.

 Then later Saturday night was date night for Paul & I. We enjoyed pigging out on popcorn we didn't have to share with the boys while at the movies. The movie was okay, we mostly enjoyed the time together and yes even the talking during the movie. I'm pretty sure the couple in front of us didn't enjoy that.

I think my 40's are going to be great! I'll see all four boys graduate from high school and move into adult hood. I'll enjoy Paul retiring from the Army at some point and hopefully starting the next chapter in his career. I'll see Jeremy gain more Independence with the addition of Balto to his life. Yes folks, 40 is looking as good as I feel these days.

Proverbs 31:25

 "She is clothed with strength and dignity;
    she can laugh without fear of the future."

A Bit O' Crazy

It's been a minute since I wrote about the puppy updates this week. Sorry folks, but it's like having a toddler in my home again. An unpotty - trained toddler, uggg. I've been working hard with Balto on going to the door so we know when he has to go outside. Some days it seems like we got it down pat only to have evening accidents. I think the evenings are harder because I'm exhausted at that point. All I want is to sit in my chair and relax like the good old days before puppy arrived by 7PM. There will be none of that so called relaxing while he is in the house. Don't get me wrong we are having a blast with little man, but it's a whole lot of work.

He has been doing so good on our little outings that I can't really complain to bad. He made it to Jeremy's school several times. We took him to Boy Scouts on Pinewood Derby night & he was awesome! That gym was loud and crazy with little boy excitement. He laid by me or Jeremy & only barked at the very end. He was good for two hours!

Panzer is tolerating him most days. Sometimes he is fed up with the sharp puppy teeth, but has done relatively well considering his world was turned up side down. We are all adjusting and just enjoying this time with little guy because April 11th will get here way to soon. That is when he goes to our puppy raiser in Nevada.

Now you may wonder as well how has having puppy worked into my workout routine. Not so good-lol I ran a couple times this week but can't leave him in his crate for more then an hour right now. Thankfully my son got sick two days this week. I know I was actually glad I had my fourteen year old home to puppy sit so I could sneak out to do errands. Poor guy didn't mind though, he laid on the couch & took him out when he needed. While mom got a much needed puppy break. I squeezed in a few workouts but not as much as I usually manage. Monday starts running boot camp since I am officaly four weeks out from my first 15K. My Saturday run of 5.92 miles was hard and by now it should not have been.

We are all adjusting and super happy to have Balto. But this mom will be even happier when he figures out how to sleep past 5AM & potty outside. Have a great Sunday everyone. I hear there is some football game today- but since the Bears aren't playing not sure why anyone would watch-hehe