Friday, June 22, 2012
I found out earlier this morning that Crystal has passed on and is now in a better place. She left our world around 1:30 this morning. I am beside myself, even though it seemed inevitable with the quick turn of events, she was surrounded by family the past few weeks waking for kisses and smiles. I know she is in a much, much better place but can't help but shake my head at the amazing woman, mom, and friend this world has lost. I know we've spoken so many times about how she wishes she had met Josh and how great the reunion will be when I get to hold him again, I am comforted to know that she has probably already grabbed him and spun him around upside down style like many CHARGE kiddos, and one of Eva's favorite pastimes. To say Crystal is an amazing person only touches the surface, she has given nothing shy of everything for her family and friends. Thank you for sharing so much love and life with us. Please keep the Masionis family in your prayers and give them comfort and support, I am constantly in awe of how much the human heart can handle, and this family has endured so much. Crystal and Eva this past Mother's Day
Friday, June 15, 2012
This past weekend Jessie, Grandma's dog, yes the one that just turned 1 in April had her first Dock Diving competition at Riverfest in St. Charles on Saturday and Sunday. On Saturday Jessie took 5th and 9th place with jumps over 16 feet. On Sunday she got 3rd place with a 17 feet, 8 inch jump. She also was kicked out of Amateur status which meant she was not in the finals--had she known she'd have saved that jump for the finals, but she jumped so far in her last jump before the finals that she went from Amateur to SemiPro with a jump of 19 feet, 11 inches! Jessie made her way out of Grandma's hands a couple times and headed straight for the dock, she loves the water and is totally in a zone up there. Grandma and Jessie did a great job, even with the heat! You can go to You Tube and search Jessie Dock Diving for 2 short videos from Saturday! Since Jessie jumped out of the finals by jumping into the next level of competition we were on our way out to see her, but she was not in the finals. So we were more than halfway there and decided to stay out at RiverFest and have some dinner and walk around. Of course that meant the kids first hand at some fun rides!
Per transitofvenus.org What is a transit of Venus? When Venus passes directly between earth and the sun, we see the distant planet as a small dot gliding slowly across the face of the sun. Historically, this rare alignment is how we measured the size of our solar system. The view is like a front row seat to the transit method, by which we now find planets around distant stars. When is it? Observers in North America see Venus on June 5 around 6:04 p.m. EDT until sunset. The entire transit lasts over six hours. This will be the last transit of Venus to occur in your lifetime. Next chance: December 2117. So, if you know Phil you know he knew all about this well before hand and had purchased some viewing glasses where it gives you the reverse image. The glasses kinda looked like 3D glasses but allowed us to look at the sun. We took a picture through the glasses, so here is our view of the Venus transit:
Saturday, June 9, 2012
Thursday, June 7, 2012
Why? Seriously, why? That is all I am asking this morning as I shake my head. You have most likely heard me speak of Crystal in the past. She was one of 4 people that came to Joshua's wake that were complete strangers. There was a mom that had a child with CHARGE syndrome that had passed away as well and came to comfort and I would later meet up with again at the CHARGE conference and learn her full story and how she deals with grief, another father in the area that has a son with CHARGE that was trying so hard to hold himself together until I went to hug him and he started to cry saying "It could be any of our kids right there." And then there was Crystal. Crystal drove from Round Lake Beach with her daughter, Eva a CHARGEr, and was there to let me hug her daughter, see what Josh would be like in a few years, and to be of great support. Our friendship only grew from there as we met up again at the CHARGE conference in Bloomingdale, had a mom's night out dinner with a few other CHARGE moms, one being the other mom that had a child that passed as well as a few others that I still keep in good contact with. Crystal and I have e-mailed, talked, met up, gone out, and have been to each others kid's parties, etc. She has made so many wonderful photo montages of Josh, always set to perfectly picked out music, remembered him at her Bowling Fundraiser, and has come to every CHARGE run we've had. We met up in Orlando at the conference last year as well and her son Alex (who shares the same birthday as Jill) loved playing with Joey and Jillian, as did Bailey his brother, and of course Eva too. Dan works very hard for his family and still has been Crystal's glue through thick and thin. I spoke with him this morning and the numbing sound in his voice brought tears to my eyes. How can so much tragedy strike one family? Why do bad things happen to good people? All I can do is pray, there are no words, and that is something I know Dan knows too well, he is there for his wife, for his family, and waiting for what may come next. 2 years back, Crystal found out she had melanoma cancer in her leg. Undergoing surgeries and treatments. We had a celebration downtown with just the girls (my first time stepping into an American Girl store, as well as having a drink at the Hancock Observatory!) to celebrate the end of her treatments--June 12, 2011. (The bracelets shown in the one picture was from Crystal to all of us, as she made bracelets in memory and in honor of different CHARGErs and would sell them to raise money for the Foundation.) Shortly thereafter, cancer was back and she was starting treatments again. She had a few scares where she thought it was moving to her lungs, was back on treatments, and as recent as May 13 posted on her blog: This past week has been a pretty good week, for about 3 weeks after my last treatment I have had to have blood and platelets every week. BUT NOT THIS WEEK!!! This week I got news after my blood work and CT scan, my blood work was finally back to normal and the cancer is gone from my lungs and almost all gone from my leg and its still breaking down I am almost in complete remission. I got 4 weeks off of treatments, doctors, scans, blood work.....I am so excited and finally getting some energy back. I don't know every single detail so the specifics here are not exact, but from what I understand 2 weeks ago Crystal had a seizure. All seemed to be ok afterwards, and she was home. She was a bit forgetful during the week and according to Dan just seeming completely run down. After forgetting her words a bit more during the week Dan's mom asked her if she wanted to go to the doctor, and Crystal said no she wanted an ambulance. Apparently the cancer had moved to her brain and they have tried radiation but to no avail. Dan and Alex are at her side each day, and Dan said he is hoping to come home today with her and place her under hospice care where they will come in and care for her needs but so that she can be comfortable at home. I found some information out from Ellen, thank you!, and spoke with Dan this morning who said he would keep in touch as well as I will be sending meals, and may be heading out there to help with the kids or whatever is needed. All that we can do is keep Crystal and their entire family in our prayers. Please do so, and don't take a single person in your life for granted. Life is a gift, we never know how long we have or if we will see someone tomorrow, don't be afraid to say I love you, to give a hug, and to pray.
Tuesday, June 5, 2012
Our friend was so nice to allow us to use her camper for a weekend. It worked out well since they were camping the weekend of Memorial Day and then could store their camper and allow us to use it the following week. Friday before leaving I searched and put on some Yogi Bear Cartoons, and Joey and Jillian loved it and now request it regularly! They loved the camper, when I asked Joey at one point what his favorite part about camping was he said napping! He thought it was awesome to sleep in the camper in his sleeping bag, next to Jill, and with his lantern! We had lots of campfires, yummy campfire food, tie dyed some t-shirts, played at the big park they had, went mining for some cool rocks, walked around a lot, went on heyrides where they sang some good old camp favorites, had cartoons in the morning at the activity center, Jill and I did morning exercises with Yogi, other crafts during the day, an outdoor movie, a hilarious show where the workers danced and we saw lots and lots of Yogi, Boo Boo, and Cindy Bear! We even tried out a pedal cart which was quite a workout, Joey loved playing ladderball at the campsite, both kids loved the fish on the wall in the camper that would sing a very catchy song, and everyone seemed to enjoy the fun of camping for the first time. Although as Daddy said to Mr. Engler it was far from roughing it with all the amenities they had with the camper! We have tons more pictures, but here are a few of our festivities:
The kids are now starting their second week of summer vacation! The last week on Thursday was an all school picnic, and while I was chasing after both kids playing with their classmates, visiting with their friends' moms, and teachers I got one pic of Jill with her Johnny. Johnny's mom was taking a picture of them when I was wondering where she ran off to. I had taking Joey potty and found the two posing for a picture together with arms around each other. Of course when I went to go snap my picture they stopped, but Mrs. Kurtz one of their teachers was passing by and commented how that picture will be worth a lot in 20-sum years when they are getting married. The two are inseparable and when I ask what she did at school she'll tell me she "played with my Johnny." Mrs. Kurtz will testify that the two play very well together and are the biggest goofs! Memorial Day was the midpoint between Uncle Chris' 40th birthday and Daddy's birthday. Our patio was done so we hosted the birthday gathering...of course our patio furniture was not going to be delivered until Tuesday though! But we made due and the kids had a blast in the blow up pool, Uncle Chris had Christy pulling him with a string on the hammock to rock him, and the weather was great! Happy Birthday boys!
It was time, we had debated summer after summer, and finally bit the bullet. I am so glad we did, and so glad we went with a stamped concrete patio instead of another deck. We are very happy with the design, the seat wall, the firepit (that Phil and I glued and put together after the patio was done, but the workers cut it and numbered it for us). The kids love playing on it and we can't wait until we have our first fire, which will be soon! Of course the kids loved watching the construction take place as well, and even though it seemed to take a while to get started the process did go quickly once they started it.