Proof that Spring is around the corner: the sun has actually been shining in the Pacific Northwest! It's still cold but we don't even care. We have been taking advantage of the sunny days every chance we get! We love to explore different parks/playgrounds in our area. Joel always has a blast. He would stay outside all day long if we let him, so we definitely need to find a house in Ohio that has a big yard!

 

Our monkey--always climbing! He is brave but his mama is usually a nervous wreck! HA!

. . .

 

Today we went to the Point Defiance Zoo & Aquarium. Joel and I have been to the PD Zoo once before with my friend & her little girl, but Jeremy has never been [other than today]. The last time I brought Joel he was only a year old.. It was fun to see how he reacted differently to everything this time. He seemed to be more aware of the animals today which was fun. I think he really enjoyed the aquarium because he made us walk around it three times. :-) It was exciting for us to see him point at the fish and then actually say the word "fish!' {Joel has speech delays caused by tuberous sclerosis complex.} He also liked seeing the elephants and the tigers.

 

 



Seabee Ball 2013



Jeremy and I attended a military ball tonight. Joel stayed with a sitter for the first time ever. It was hard for me to leave him but we definitely needed the alone time. I know date nights are important for our marriage.. it's just hard to leave Joel because of the seizure fear. He hasn't had any seizures in months but there's always the fear that it could happen at any moment. I almost talked myself out of going--I stayed up late the night before crying to Jer about all of it. In the end I'm so thankful he talked me into going! Joel did great at the sitter and we had a wonderful evening with friends. +It's always fun to get dressed up! 

My Trip To DC & The Flu

I had a great time in Washington, DC for March The Hill! I was only able to meet with 10 Legislative Assistants but it still felt very empowering to be there & to be able to share our story. Overall the meetings went well, and I think we will definitely have lots of support from Congress to continue the funding for the Tuberous Sclerosis Complex Research Program.

Meeting everyone from the TS Alliance was bittersweet for me. It was awesome to be surrounded by people that understand exactly what we are dealing with and have felt the same fears we do.. but it's also heartbreaking to know so many people are suffering from TSC. I made lots of new friends though, and I hope I will be able to see them all again this summer.

I was worried about how Joel would handle me being away (because I had never been away from him overnight) but he did way better than I ever imagined! I was gone for three days and I think it was harder on me than him. I arrived back in Seattle on Thursday morning and I was so happy--I couldn't wait to see my little man and his daddy! Unfortunately I woke up yesterday morning with a 103.5 fever and had to go to the ER.. I have the flu so Jer has me quarantined to our bedroom. Poor Joel doesn't understand why he can't be in here with me so he knocks on the door and cries for me. It breaks my heart! :-(

March The Hill here I come!

Ever since Joel was diagnosed with tuberous sclerosis complex I have prayed that God would help me be an advocate for Joel + others that are suffering from TSC. And oh man, He definitely came through!

Last summer, after participating in our first Step Forward To Cure TSC walkathon, I was asked if I would be interested in becoming the Chair for the TS Community Alliance of the Pacific Northwest. Of course I said yes! (Volunteering for any and all things TS related has been my therapy. It makes me feel like I'm making a difference, even if I can't physically heal Joel.)

Every year the Community Alliance Chairs, Board Members and other supporters and volunteers gather in Washington, DC from across the country to meet with their House of Representatives members and Senators to ask for their support for Federal TSC research funding. This year I will be going and representing the Pacific Northwest (Washington and Oregon)!

 

If someone would have told me a few years ago that I would be going to Washington, DC to have meetings with Representatives and Senators inside the Capitol, I would have laughed and walked away saying "bless your heart!" I never in a million years thought I would be doing this. (Then again I never thought I would have a child with "special needs" either.) ME.. a stay at home mom..!!!

 

 

I have collected letters to give to the Representatives and Senators. The letters are from people in the PNW that are struggling with this horrible disease. I can't even begin to explain how honored I feel that I will be able to hand deliver their letters and advocate for them! I just hope and pray I will find the right words to explain how important federal funding for research to find a cure really is!! 

 

So, next week if you think about, please keep me in your prayers.. I'm definitely going to need it!

 

Seattle Space Needle, Gum Wall, & A Few Other Tidbits

On Tuesday Joel had his last appointment at Seattle Children's Hospital. We are moving in April (yes, soon!!) so his next appointments will all be in Ohio. All of his doctors have said the hospital in Ohio is awesome, and that just confirms to me that we are making the right decision. The Ohio hospital has a small TS clinic which is a huge plus!

Things are slowly falling into place which is very exciting! Jeremy had a few phone interviews but only one company has called back to schedule a second one, and they also want to schedule a face-to-face interview in our area. According to the hiring manager he can't formally offer Jeremy the job yet but he is definitely the top choice for the position. So we're praying, crossing our fingers and toes, and hoping that no one else will come along and snag it up!

Anyway -

Before Joel's neurology appointment (which went great by the way, only had to increase his medicine because he has had a couple staring spells again) we went to the Space Needle for the first time. When we arrived at the Needle the lovely fog rolled in.. huge bummer. Well, bummer for Jeremy.. not so much for me. I was excited about the fog at first because I thought Jer would change his mind and I wouldn't have to go up! (Fear of heights anyone??) But.. he didn't. So up we went! The fog was thick and we couldn't see a thing but it actually helped calm my fears. Since it was early during the week we were the only ones there and Joel had a blast running around. Right before we had to leave the fog went away and we were able to get a couple pictures to document our adventure!

After our appointment at SCH we headed over to Post Alley, under Pike Place Market. It was time for me to face another fear.. GERMS! (Y'all think I'm kidding huh? HAHA!) We put gum on the famous gum wall. It was super gross but also very cool!

I love the market! I wish I could go there once a week.

Headed home on the ferry

I can't believe I ever hated living in this state!! {I think part of the reason why I hated it so much was because I was not feeling well. I was suffering from depression during that time.} Over the past year I have definitely grown to love it and I'm super sad that we have to move away! Jeremy and I have talked about taking trips back here when Joel gets older so we can show him where he was born and spent the first two years of his life. We will always consider Joel our little Washingtonian no matter where we live! :)

Big Boy Bed

I breastfed Joel for 18 months and during that time I would always rock him to sleep while he nursed. Even though he no longer breastfeeds I have continued to rock him to sleep every night. It's just our thing. I rock him and pray and he holds my hand until he falls asleep, and then I put him in bed. I cherish that time at night because I know I won't be able to do it forever.

He has already grown so much that it has become much harder for me to lift him up over the side of the crib to lay him down.. So, we decided it was time to make the switch to a big boy bed. I was nervous about how he would do.. mostly because it took forever & a day for him to start sleeping through the night and I didn't want to ruin that. But thankfully we haven't had any issues. Every morning when he wakes up he runs straight down the hall to our room, swings open the door, and jumps into our bed with a huge smile on his face. It's one of those moments I wish I could record in my memory forever.

{I bought a pillow for him but he doesn't like it so it usually ends up on the ground at the foot of his bed.}

Two Years Old

Joel turned two years old on Sunday, February 03!!

We had a party to celebrate with friends on Saturday (Feb 02). We had so much fun!

For months I had been planning to have a train themed party, but Joel obviously had other ideas... We took him to the store to buy decorations and he picked out Sesame Street "Melmo" (that's how Joel says Elmo). And just like that all my cute train party ideas from Pinterest went down the drain! HAHA! Joel loved his "Melmo" party though, and that's all that matters!



 

 

Since Joel's actual birthday was on a Sunday this year we couldn't really do anything fun other than go to a park. That was fine with him though! He LOVES being outside and playing at parks. We decided to bundle up & walk to a park so we could break in his new wagon. Needless to say he had a blast!

 

. . .

I love to compare photos to see how much our sweet boy has grown and changed..