Our life continues to have the brightest of brights, the darkest of darks and whole lot of bittersweet in between.
It's been ages since I've posted and, once again, I have limited time on my own laptop to update you all. I'm not promising any inspiration here, but I'll simply let you know what's been "up" with the Mulders since March.
How about that picture to the left to start?? Good heavens, have the Detroit Red Wings been good to us and we love them for it. In March they hosted a "Wings for Wishes" night to raise money for the Make-A-Wish Foundation, which has blessed our boys with two wonderful wishes. They invited us to come watch the game that night from the Zetterberg Suite along with a few other Wish families. Then, our facebook feeds blew up the week beforehand because they were featuring a picture that was taken during Jarod's wish with Jimmy Howard (their starting goalie) as their facebook cover photo!! Look at that precious face! Jarod was famous once again. :) We had such a great time at the game: being spoiled in the suite, gifts for the boys, a surprise meet-and-greet with Henrik Zetterberg and then another tour of the lockerroom. We had posed Jarod in front of Jimmy Howard's locker for a picture when the goaltending coach walked by and said "Hey, buddy! You're back! Does Jimmy know you're here?" Are you kidding? Then he went back and got Jimmy and Jarod got to meet and talk to him all over again! He was so excited he could hardly speak, just sat there smiling. What an experience! They have blessed us three times now over the last three years. Boy, do we love our Wings!
Then on to May, when Caleb got his wish from the Make-A-Wish Foundation to go to a Star Wars Weekend at Disney World. If you know Caleb, those two things together definitely make the perfect weekend for him. We were spoiled for five days at Give Kids the World (a resort for Wish kids), park passes every day, free meals, gifts each day when we returned to our suite, ice cream any time we wanted and fun themed activities every night. We needed a vacation to rest after that "vacation". With our wonderful Fast Passes we got to skip every line, which meant that Caleb was able to meet all his favorite princesses. :) The highlight, though, was the day we spent at Hollywood Studios for his Star Wars wish. He trained as a Jedi, got to fight Darth Maul, got behind the scenes meet-and-greets with characters, had is very own VIP escort the whole day (yes, we were big time), rode all the rides he wanted, and had his favorite lunch and free snacks and ice cream throughout the day. He was in his height of glory all day. Make-A-Wish is such a fabulous organization. We will treasure those memories forever.
So how about our day to day?? That's a different story. Our kids are challenging, especially Jarod, and most days they wear us out. We had a really rough summer with Jarod. I swear I only remember bits and pieces; we were so tired. Jarod never sleeps through the night and we were working with his psychiatrist last spring to try new meds to get him to sleep all night. Our experiments seriously backfired. Jarod had what we now understand were bad reactions to the medications and we went through a month and a half of him raging for hours each night. Some nights he would fall asleep more easily and then wake up in the middle of the night in a rage: throwing things, kicking things, yelling, screaming, crying. The worst part was that he would smack his hands or bang his head against windows, so we had to move all of his bedroom furniture to block them. We were zombies. There were nights that we were up for 2-3 hours trying to settle him down. Mark found that driving him in the car would calm him down (just like when he was a baby, go figure...) and would have to do this for hours. I would be too wound up at home to sleep. After trying to few different meds and not getting any improvements we finally scrapped it all and went back to just the Melatonin that he gets every night. Slowly, but surely, over the course of the next two months we have been able to get nighttime back to a somewhat manageable status. He still gets up at least once every night, but I'm not going back to those horrible nights again, so I'll live with it. I credit God above with giving us the stamina to get through every day and the ability to hold down jobs. I truly believe that's the only reason we've been able to.
As for Caleb, he is still his vivacious self. However, we've been noticing more changes in him and it scares the crap out of me, to be honest. I think I've allowed myself to live in denial when it comes to him because he's been so much more "normal" than Jarod ever was and has been able to achieve more in school that Jarod did. But, this last year we've noticed him really struggling more. His body is in constant movement, his attention span is non-existent, his social skills are really immature and his behavior has gotten worse. He's throwing tantrums and is so much more defiant than he ever used to be. Sitting is his IEP recently I learned that, although he is still in a gen. ed. classroom, he has started doing some activities with the CI class. And I started to cry. I was so embarrassed, but it overwhelmed me and I couldn't stop. It honestly felt like the beginning of the end for me. Then we just recently had some neuropsych testing done at a local hospital to monitor his cognitive abilities and the key words I came away with were "losing ground". And again I cried. I keep hoping by some sort of miracle that he will be spared from this stupid disease, but that won't be the case...
So what do we do now? And what about that big news I mentioned?? I put out a cry for help last spring and it was answered. I said I wanted to raise money for research and people stepped forward within 24 hours. A big thank you to John and Sheryl DeJonge for donating money to pay for state and federal fees to get incorporated and non-profit status and to Karen Rowlader for helping get all of the legal paperwork done! I'm happy to announce that, after six months of preparations and getting our board members together, we are incorporated and have mailed in all of the paperwork to the IRS to become an actual 501(c)(3) non-profit called THE SANFILIPPO HOPE INITIATIVE, DBA Team Jarod/Team Caleb!! We can now receive tax-deductible donations and are going to find a cure for this disease!! Do you have a way to help? Email us at teamjarodteamcaleb@gmail.com. Do you have ideas for fundraisers? Email us! Have a skill that we could use? Email us! There is good research being done, but because of big pharma's disinterest it is being funded primarily by family foundations like ours. We need your help!