Tears, Coffee, & Baking

Since I last checked in on the blog I have sent my husband on his next adventure thanks to the Army. Off he went to Fort Bliss in El Paso to sit through countless classes. I mean seriously he sat through how to exit a roll over vehicle & an IED class. I'm sorry but if you've deployed 5 times in the past 11 years these seem like the dumbest classes EVER to make these guys endure. I think I am only mad because his time for this hardship tour doesn't start until his big size 11 1/2 combat boots hit the ground in Egypt. So thank you Army for wasting ten days of time away from our soldier to make him sit through silly classes that I sure hope he would know by now, most likely by heart!
I think saying goodbye caught us all off guard. We knew he was going but we didn't really expect the sudden tears that spilled down my eyes at the airline gate. My poor husband was shocked. He kept telling me how easy this time was & how different. But in my head all I could feel was sadness that he had another whole year apart from our family. I mean he isn't getting home until January 2015- to me that is just NUTS & I've done a 13 month deployment before. Not sure why this time it bugs me.....

I took the first three days in my usual stride. Thankfully the boys didn't have obligations so I was comfortably in my pjs by 3PM every day for 72 hours. Our 18 year wedding anniversary day came & went with me in my pj's.By Tuesday I headed to appointments with the boys & hit up the gym. Pouting time was over and we all just sort of fell right back into our routine. I told my friend today while at coffee how it just seems normal now when Paul is gone. How sad is that, that the house can just flip a switch and run smoothly, well so far smoothly. Coffee with a friend was a nice break today away from the house. Baking some brownies for the boys & new gluten free muffin recipe for me tonight was also nice. Now we just sit back & wait, wait for the Army to finally get him to Egypt so our year apart can really start.

Keeping My Promise

Making the first Blog entry of 2014- keeping my promise to Blog more.....

Happy 2014, I can hardly believe it's a start to a whole new year already. At times 2013 seemed to fly by and at other times just drag out. I know that is normal for every year , but hear lately it has flown by with lightning speed. The next 48 hours could really seriously slow down to a snail's pace for me & the family. We had a  lot of fun at our annual PJ New Year's Eve party staying in our neighborhood close to home. We had good food, drinks,laughter, & a seriously strange new board game to try last night. The kids loved running around blowing the party horns that once again all the adults questioned "why" we buy them every year, way to loud! I loved that Paul was home and able to spend the start of his year with us & his friends. Overall a wonderful night that was the perfect way to usher in 2014 & all the fantastic opportunities that lay ahead. We hope you all enjoyed your New Year's Eve whether it was spent at home quietly or even at a huge event with fireworks. Remember today is a new start to a new year. You can choose to make the year whatever you like. I plan on making it fun & exciting for our boys while Paul is in Egypt. Hopefully take a couple road trips , pick up Balto from TN, and just enjoy the life God has blessed me with. Blessings to you all in 2014!!

The silly flash got Paul, we had just arrived so it was still way to early for this look he is giving -haha

Year End Review 2013

I am such a bad bad blogger this year. Maybe with Paul leaving for Egypt in a week I'll pick back up some. I know the late nights will kick in & maybe that is when the blogging will happen. I accomplished so much this year & the family time was amazing. I traveled more then I had ever planned to Las Vegas twice, Tennessee, Colorado, & Washington D.C.. I ran not one but two half-marathons and now hope to run my one & only full marathon in 2014. I can train while Paul is gone to help fill the time.

Anyway since I don't make near as many photo albums as I use to for the kids. I have done a quick little video on the computer & uploaded it to YouTube. I love the song & each picture holds a special place in my heart. We were blessed to have Paul home for almost 19 months now, Jeremy is out of the hospital feeling well, & Balto is almost ready for us to travel back to TN to pick him. Life is good my friends. Here's to a great 2014 Happy & Merry!

Tic-Tock

I woke up at 1:50AM and rolled over to stare at the clock. I was not sure why I was awake so I laid in bed for a few minutes then gave up the fight to go back to sleep. I decided to come lay on our super comfy couch thinking I could fall back asleep with a change. Now it's 3:42AM and I am still awake, yawning wishing I was asleep but realizing it's going to be a super long day ahead. I've traced it back to the source though of my restlessness. 64 days, tic-tock is the clock going through  my head all the sudden. Life has settled down and my brain has finally caught up with what I have tucked away for the past 6 months in hopes to have a somewhat normal family life.

64 days until sleepless nights are normal again. Until waiting by the computer and never leaving my cell phone more then an arms length away is normal again. I think the knowledge that time was drawing near pushed itself to the front of my mind on Saturday evening. I listened as Paul said goodbye to a friend after our annual Halloween party. His words jolted me out of my false sense of normalcy. He said " we have to get busy, we have to get this done. I'm short on time dude and I want to make this happen before I leave.". That right there, those simple two sentences knocked me right back into pre-deployment mode.


I can't complain we've had a nice ride of having Paul home this time. We will have had 17 months and 2 weeks this time with our family together as a whole unit. That is the longest stretch of time together since 2006. I also can't complain because I have packed a lot into these 17 months. Paul and I went on our first vacation alone with out children in 16 years. We did small family trips to the beach to enjoy time together. Paul & Matthew spent a week in Colorado with his family camping. I made my first trip to Las Vegas, the Sturge-Weber conference, & completed two half-marathons. Paul was able to partcipate in several Project Healing Waters trips that he loved. The kids enjoyed having their dad home for consecutive birthdays and holidays. So no I can't complain about losing sleep or the fact he is leaving again for twelve months. But I can see that my mind & body have started the prep me for the sleepless nights. How it creeped up on me almost makes me feel like a rookie at this deployment thing. But the calm, the family time, the alone time with my husband those memories will be in my memory now to help on these up coming crazy sleepless nights. Now I am off to lay on the couch and hope that my brain shuts off & my eye lids get heavy. That the thoughts of what we need to do before he leaves evaporates and I can just enjoy the next 64 days before a new countdown begins.

Hello Fall

Oh my goodness summer came to an end & I realized I have been the worst blogger for awhile now. I have just been so busy with life that blogging took a back seat. I decided I would try to do a once a week post until after the husband deploys. That way I can stay focused on our family time before he goes. Then once he is gone & sleepless night prevail I can be a better blogger I promise.
We welcomed the first day of Fall with our second annual walk for The Chelsea Hutchison Foundation. Jeremy along with his team mates Holly & Alaska over at Holly-Through the Eyes of a Service Dog worked tirelessly for about 5 months towards their goal of raising $3500.00 to help others. Not only did we make our goal we surpassed it by $100.00!! Thank you to all of our supporters who donated to a great cause! Now other families can get a grant to help train their own service dogs. We also helped spread the word about Sudden Unexplained Death in Epilepsy. It was windy & rainy for our walk in WA, but the boys had fun anyway.

We then came home to make some yummy Fall caramel apples to eat.

Now we are about to head out to a fellow friends & BEARS fan house to eat chili to watch the big game. I just love love love FALL! I hope you all are enjoying your Sunday & I promise to try to be a better blogger again soon.

 

 

Everybody Wants to Be Loved

I am not exactly sure how to start this post about the time Jeremy & I spent in Denver over the past weekend for the Sturge-Weber Conference. We were so excited to attend & the excitement just mounted as we arrived in Colorado last Thursday. Jeremy kept asking if I was sure other kids would be there with birthmarks like his? I assured him that there would be a lot of children attend who had similar birthmarks & who all had Sturge-Weber Syndrome (SWS). As we got onto the shuttle for the hotel we met another family from all places Seattle, WA! They had their nine year old daughter with them attending their first SWS conference as well. Both the kids were excited and were chattering away when we arrived at the hotel with anyone who would listen. Once we arrived it was time to check in but before we could Jeremy saw two or three others with birthmarks. All I heard was "WOW mom they look like me!". I tried very hard at this point not to cry but my eyes were very misty as I could only nod in agreement.

I knew Jeremy was at the age that people asking or staring all the time was starting to bother him. Some days he would answer the questions of on lookers other days he would ignore them. But always I see the regret in his eyes that he has a birthmark & no one else he knows does. Now as we stepped into the hotel he had the biggest smile on his face. No more did he feel different he felt included , the same as his peers. This was a huge moment for us both.I will never forget it as long as I live.

The first stop after checking into our room was the dinner & registration portion of the conference. Once again everyone was so welcoming , children were laughing together. Teenagers were huddled together talking & parents were all smiles. Our kids finally felt like everybody else & the love in ballroom D was palpable. We sat with some lovely ladies who had come from Canada that night during dinner. Jeremy laughed & giggled with the table behind ours as the dad made silly faces through the boring parent parts as Jeremy kept saying. After all the formalities were over it was time to hit the pool!

Here is were I met Josephine & Jeremy met her daughter Julianna.

 They became fast friends while the moms chatted in the hot tub. We learned we had a lot of similar medical things with the kids & a lot different. That is the crazy that is SWS, no two cases are the same ever. The kids swam until they were ready to head to bed. We had an early morning ahead so sleep was needed.

 The next morning Jeremy was so excited for the kids camp I barely got him to take this picture with me. Off he went to spend the day making new friends. Off I went to listen to the most fabulous speaker I have ever heard Kathie Snow who wrote Disability Is Natural. She made us parents laugh, cry, & feel like we are normal in this crazy medical mess we deal with daily. I am telling you folks go check her out if you have the chance, it will change the way you think about your children who have disabilities. I met more wonderful parents during the day with our break sessions about parenting. I discussed options for childcare, parenting, & in-laws- yes folks we went there! HAHA!

The hotel kept us stocked up on tables of any kind of snack you could possibly want. Jeremy had so much chocolate milk I thought he might float away. When I picked him from camp he was tired but happy. He was also ready to swim again!

So we went to the pool dressed as a cowboy of course. I mean we are in Denver after all. My heart just exploded as we entered the pool area and all the kids start yelling " Jeremy. HI!! You made it come swim with us!". Some were kids from camp some were sibilings, all were brand new friends he just met that day. Kids who looked similar to him, who didn't notice he can't see well & who didn't care. I almost cried again for the hundredth time that day. It confirmed in my heart what I already knew. That everything we had put into getting Jeremy to this conference was worth my energy. He was blossoming right before my eyes. After swimming it was time to meet in the lobby for the SWS Miracle Mile Walk to downtown Stapleton. We also finally got to met Julie & Doug Hutchison . They are some amazing folks who braved Denver traffic for over an hour to come meet us & walk.

The Chelsea Hutchison Foundation helps families receive grants for service dogs like Balto. They will in fact help give us the money we need to pay for Balto's training when he passes his final tests. We have been chatting with Julie for over a year now & were so glad to meet them during our time in Colorado.

They braved the heat and walked the mile to spread awareness about SWS & a route to a cure.

The next day brought more kids camp for Jeremy were he played with new friends Jesse & Madisynn . I got to listen to the doctors explain how they found the gene that causes SWS. I tried to understand it all but some was over my head. What I did understand is that it's nothing I as a mother did while pregnant, it's not genetic, it's just something that happens like a lighting strike! They still don't have a cure but with this amazing discovery we hope one day we will have a cure to SWS.After all the medical talk it was time to meet up with Aunt Stephanie who had recently moved back to Denver. We were lucky enough to get a few hours to visit.

Then it was time for the best part , wait I already said other parts wer the best. That is because the whole conference was amazing! It was time to dress up a little, kick up our heals and celebrate the new friendships we had made. It was dinner & dancing time!

This is were another first for Jeremy happened. After dinner a mom came up to me that I had met earlier in the day. We had no idea while we were chatting away that our children were also playing at camp together. What's more we had no idea that they really liked eachother. Once we made the connection we exchanged address's so the kids could become pen-pals, as she lives in Utah. That's right folks SHE, a girl!! Her name is Madisynn and she is very lovely. Jeremy was excited to ask her to dance. Something he has never done before. I & her mom were almost in tears as he went up offered her his hand and they went to the dance floor. I have some video but have no clue how to post it here. I have a few pictures but the photographer Rick who was running around got some amazing shots & I can't wait to see them.

They never stopped smiling the whole time they were twirling away. I never stopped tearing up! It was just an amazing time that is so hard to capture on a blog . Words will never describe the range of emotions that went on last weekend. We made new friends across the country . Jeremy feels so great about himself. His self esteem is through the roof! I know we will try to make another conference happen in his future. The sacrifice is worth it all to see his smile & know he feels the same as all his peers. Even if it only lasts a brief moment in time. I say "a brief moment" because as soon as we were back at the airport a lady stopped and starred for what felt like minutes. Jeremy turns to me with his first small smile of the weekend and says " back to normal, huh mom?". I smiled back and told him we are always normal dude & offered some gum.

I will leave you all with these parting words from this wonderful experience. Never think oh, poor Jeremy, if he only looked like everyone else. If he didn't have so many medical issues. We don't need pity we need acceptance that Jeremy can do all the same things you can it may just take him a different route to get the same results.

  I heard this song over the weekend then again when Julie put it in a slideshow. It really does hit the nail on the head with these amazing children,teens, & adults who go through life with a grace, happiness, & love that only the rest of us could dream of having. I am blessed to have Jeremy & I am blessed to have been lucky enough to meet other amazing SWS families.

I don't want to leave out Rick from Positive Exposure he made Jeremy laugh & gigggle so much! He is an amazing person who decided beauty comes in all shapes & sizes. He has made it his mission to show the world that everyone is beautiful, not just who the fashion magazines say are beautiful. He took some amazing photos & I can't wait for him to post them all. I'll do a whole blog when he does of those pictures. Jeremy has his own series by Rick called "Hats"........