Joshie

Water balloon fun!

Playing with cousin Elliott

I really wanted to share a few things Josh has said recently before I forget! We always think we will remember the cute things our kids say and sadly, we usually forget if we don't write them down! So, here are a few of Josh's!

Towards the end of the school year last year, Josh's preschool teacher approached me and shared with me something Josh had said to her. She was very impressed and even got teary eyed as she told it to me. Josh had this conversation with his teacher, Miss Debbie one day.

"Miss Debbie, are you going to heaven?" 
"Yes, Josh, I am going to heaven"
"Is your family going to heaven?"
"Yes, my family is going to heaven."
"I know someone in a wheelchair who's going to heaven....My brother is going to heaven someday"

(I think there might have been more to the conversation....sadly this is all I remember!)

She shared this story with me one day as I was dropping Josh off for class. She said when he was asking her these questions, all the kids had gathered around and it was as if Josh was preaching to the class about heaven. She said it was really cute and that she got teary eyed listening to him. I thought it was so sweet and truly Josh has been listening. We do talk about heaven quite a bit in our home. When you have a child with a terminal illness, it's hard NOT to talk about it. Ryan is not scared about death or dying and neither is Josh! Jorie isn't quite as vocal about it. But, I'm thinking she has a pretty good perspective about it as well.

The other day I was working in the kitchen and Josh said to me...
"Mommy, when I talk to God, He doesn't say anything back"  "I say, God?" 
I tried not to giggle at this. But, explained to him that God speaks to us through the Bible and to our hearts. He seemed to understand as we talked about it again today. I thought that was so sweet.

Pictures in the park

                    Thursday evening, we loaded the kids up in the van; as well as my niece and nephew and headed to a nearby park for pictures! I was thinking back to the last time we had real professional pictures taken of our family. And the last time I can remember, Jorie was a baby! Needless to say, we were way overdue! I had originally wanted this session to be of just the kids. But, the photographer snuck a few pictures in of me and Steve as well. She also photographed the kids with their cousins and I can't wait to see how they all turn out. Here are two pictures from our session. I have to wait a couple weeks before seeing the rest of them. She is so great with kids! We had been going to another place for years (since Josh was a baby) and they recently went out of business. So, we gave this gal a try. She did a great job!

Our journey with SMA

Along the road of this SMA journey, there have been many different heartbreaking moments. Little moments where I am reminded of what my child cannot do. As hard as I try to ignore those moments, they are there and are sometimes impossible to ignore. When he was little, it was recess. I can still remember like it was yesterday, trying to come up with other options for Ryan while the other kids ran outside to play. He would usually stay inside to avoid the cold (even 60's was cold for Ryan) and play board games with a chosen friend who would usually volunteer to stay inside with him. As the years passed, finding that one kid to volunteer to give up their outside recess became more and more difficult. Until eventually, Ryan would spend that time alone.

As he got older, it was sports. All the boys his age seemed to be involved in some sort of sport. When it comes to sports, Ryan can play them on a video game or watch them on TV. We are thankful that technology of today allows him to do this. But, it still stings a little that he can't be outside playing the sports he so LOVES to watch others play.

I would have to stay the most recent reminder of the reality of my son's disease would be the "driver's ed" brochures that are sent to us in the mail over and over again. I am sure they send them to every 15 or 16 year old kid in the school. But, when we receive ours in the mail, I can't help but feel a twinge of sadness for my son who will likely never drive. Or at least not anything larger than his power chair.

I remember there was a time when the kids Ryan's age were first beginning to be independent. I would comment to Steve when I would see them. "Look, they are riding their bikes without their parents!" or "they are at the swimming pool and they are with friends, not their parents!" I remember how odd that seemed to me. Even more so, because at the time, Ryan was maybe 11 or 12 which meant that Jorie was only 4 or 5. Having an independent child seemed so foreign to me. I couldn't imagine having them do anything independent of me or Steve. Now that Jorie is older, I am getting that first taste of what it's like. But, it still seems so strange to have her help prepare a meal or want to be alone with a friend in a store! It does seem to take some of that sting away having 2 children who are not completely and totally dependent on me. I am thankful for each and every ability they are able to do. Because I know that each and every thing they are able to do is a miracle and a blessing not to ever take for granted. I have said it many times before, I am thankful for so many things that I never would have even thought about if Ryan had not come into my life. I can safely say that Steve feels the same.

Bandon Beach trip part 2

Decided to break this post up into 2 different posts as I had so many pictures to share! The weather while there was awesome. Ranging from 60 to 65 for the most part. The last day we were there, it was amazing weather. I think we even hit 70! For the Oregon coast, that's pretty nice. Ryan was unable to go down onto the beach. It has never been ideal for Ryan to get down to the beach. Even when we had the sand wheelchair. He's pretty content to stay in the house playing games with his dad or Uncle Bill or whoever is there with him. The last evening we were there, we convinced him to come out with us on the paved pathways surrounding the house. Got lots of pretty pictures from our walk! It's so much fun just being together with family. We were sad that my younger sister couldn't make it this time. She was missed. 

The whole gang! 

Family photo

And one without sunglasses for Steve and I 

My dad, Ryan and Steve enjoying the view

Ryan with grandma and grandpa

My parents with 5 of their grandchildren. 

Bandon Beach trip part 1

The trip there. Josh with his Burger King crown on. :)

Took a trip to Bandon this past week with my parents and my sister and her family as well. A lot of fun just being together with family in the same house! The only downside to the house is that it was two levels. This meant that Ryan had to remain downstairs for the week. Even with the manual wheelchair that we brought along for him to sit upstairs during meal time with the rest of us....he couldn't tolerate the other chair. He has to be positioned just right for swallowing. Even with all of our adjustments on the chair...in the end Ryan decided to stay downstairs and one of us went down there to eat our meals with him so he didn't eat alone. 

Our first activity was visiting an animal park nearby. My parent's took my sisters and I to this park when we were kids.This place is SO MUCH FUN! Having all the deer and goats walk right up to you is pretty cool I think. In the picture below, we had just entered the park and Jorie had already gotten out her camera to snap some pictures.  Among the animals to see were leopards, lions, baboons, bengal tiger, white tiger, brown bears, cougar, turtles, peacocks, ostrich, zebra, buffalo, antelope and elk to name a few. We also saw many baby animals up close. That was really fun! Who doesn't love anything baby? Jorie mentioned more than once that it was better than Disneyland. She is our animal lover and I'm sure will have a job with animals someday.

Just entering the animal park

Steve surrounded!

Josh really loved the goats. Pretty cute.

Jorie and cousin William looking at the baby bear.

99

So, I thought I'd play along. Found this on a blog that I follow and wanted to give it a try. So, the things I have done are in BOLD writing. :0) 




1. Started your own blog 
2. Slept under the stars 
3. Played in a band 
4. Visited Hawaii (right after Aaron died)
5. Watched a meteor shower
6. Given more than you can afford to charity (Although I don't really see it this way....just part of our faith to give even when we feel we can't afford to)
7. Been to Disneyland ( Yes, and Disney World)
8. Climbed a mountain 
9. Held a praying mantis
10. Sang a solo (Freshman year in choir!)
11. Bungee jumped
12. Visited Paris 
13. Watched a lightning storm 
14. Taught yourself an art from scratch 
15. Adopted a child
16. Had food poisoning
17. Walked to the top of the Statue of Liberty
18. Grown your own vegetables 
19. Seen the Mona Lisa in France
20. Slept on an overnight train
21. Had a pillow fight
22. Hitch hiked
23. Take a sick day when you're not ill (yes, but only when I was a teenager!)
24. Built a snow fort
25. Held a lamb
26. Gone skinny dipping
27. Run a Marathon 
28. Ridden in a gondola in Venice
29. Seen a total eclipse
30. Watched a sunrise or sunset
31. Hit a home run 
32. Been on a cruise
33. Seen Niagara Falls in person
34. Visited the birthplace of your ancestors
35. Seen an Amish community
36. Taught yourself a new language (does sign language count?)
37. Had enough money to be truly satisfied 
38. Seen the Leaning Tower of Pisa in person
39. Gone rock climbing
40. Seen Michelangelo's David
41. Sung karaoke 
42. Seen Old Faithful geyser erupt
43. Bought a stranger a meal at a restaurant 
44. Visited Africa 
45. Walked on a beach by moonlight
46. Been transported in an ambulance (No, but have had to call one several times for Ryan :( )
47. Had your portrait painted
48. Gone deep sea fishing (Yes, a few times with my dad as a kid....got REALLY sea sick though)
49. Seen the Sistine Chapel in person
50. Been to the top of the Eiffel Tower in Paris
51. Gone scuba diving or snorkeling- Yep snorkeling :) 
52. Kissed in the rain 
53. Played in the mud
54. Gone to a drive-in theater
55. Been in a movie
56. Visited the Great Wall of China
57. Started a business
58. Taken a martial arts class 
59. Visited Russia
60. Served at a soup kitchen
61. Sold Girl Scout Cookies 
62. Gone whale watching
63. Got flowers for no reason
64. Donated blood, platelets, or plasma 
65. Gone sky diving 
66. Visited a Nazi Concentration Camp
67. Bounced a check 
68. Flown in a helicopter 
69. Saved a favorite childhood toy (Several of them actually! Still have a few of my old dolls and some barbies and Strawberry Shortcake dolls!)
70. Visited the Lincoln Memorial
71. Eaten Caviar
72. Pieced a quilt
73. Stood in Times Square
74. Toured the Everglades 
75. Been fired from a job (well I was "let go"....not really fired)
76. Seen the Changing of the Guards in London 
77. Broken a bone 
78. Been a passenger on a motorcycle
79. Seen the Grand Canyon in person
80. Published a book 
81. Visited the Vatican
82. Bought a brand new car
83. Walked in Jerusalem
84. Had your picture in the paper 
85. Kissed a stranger at midnight on New Year's Eve
86. Visited the White House 
87. Killed and prepared an animal for eating (only if you count fishing)
88. Had chickenpox
89. Saved someone's life (have saved Ryan's life several times....wish I never had to say that...but that's the reality of his disease!)
90. Sat on a jury 
91. Met someone famous (Screech from Saved By the Bell) LOL!! And several sports stars as well!
92. Joined a book club
93. Got a tattoo
94. Had a baby
95. Seen the Alamo in person
96. Swam in the Great Salt Lake
97. Been involved in a law suit 
98. Owned a cell phone
99. Been stung by a bee


So, I counted 39 out of 99.... Sort of fun to do. :)

Vegas

It has been such a busy past few weeks. Steve and I got to sneak away for an amazing trip to Vegas about 2 weeks ago. We planned it out so that we could meet up with my cousin and her husband (who flew in from Chicago). It was their very first time visiting Vegas. So, Steve and I showed them around a bit. Steve and I drove. Makes for a long day. But, we feel it's worth it to avoid the crazy airports!

It was HOT in Vegas. Most days it was around 110 and did not cool off much at night. It was still nearly 90 degrees at night. We tried to spend the majority of our time indoors because of the heat! When we originally planned this trip, it was supposed to be in November when the weather is a bit milder. But, it just didn't work out as planned. We visited the "Bodies" exhibit, went to the "Blue Man Show", saw a movie and went out to eat at some amazing restaurants! Had a blast! And it was so much fun seeing my cousin! We have so much in common and share similar interests.