Hey everybody. Les here. I just want to thank Mary, Jenny and my wife Denise, whom I love with all of my heart, for developing this awesome medium to communicate with everyone about the challenges that our family is dealing with. I have always felt blessed to have such a wonderful family and community of friends who are sincere in their dedication to the well-being of our family. I am not the most expressive or touchy-feely guy but I want everyone to know that I appreciate your support and friendship and sincerely extend my love to you for your compassion.
Throughout my adolecense and young adult years my younger brother battled leukemia and our family experienced the ups and downs of a young life in jeopardy. This experience steeled me to probable tragedy and because of this I find it impossible to consider what horrible thing might happen, conciously I am aware of all of the possibilities but I refuse to dwell on the negative. I can seem cold at times but I refuse to entertain any delusions about the reality of this situation and the reality is that we really don't know what Ryder's condition or prognosis is. Because of this I will move forward as if the best possible scenario is the reality and raise my boy as if he is the next Chuck Yeager who only needs my high expectations and some wrestling on the floor to realize his potential.
Thursday, September 2, 2010
Reaching Out for Help
We've had tremendous support so far and family and friends asking how they can help. First of all, I have been in your shoes before. A good friend lost her baby about 4 years ago. My heart broke for her and her family. I felt helpless and wasn't sure what to say because I thought nothing I could say or due could ease her pain. I was wrong though....my support made a difference. She actually lost some of her friends because they stopped calling her or talking to her not knowing what to say. I appreciate your support! I appreciate hugs, chats about Ryder and what’s going on in your life too!!!! I always appreciate a good laugh:) Please don't worry about saying anything to upset me--I just need to know you are still my friend and I can lean on you. That being said----here are some ideas that would help us out....leave a comment if you would like to help w/one of these—maybe a way for others to contact you too so everyone is in the loop! I am spending my time bringing Ryder to doctors, working on his development, teaching Noah (preschool) and enjoying my family. I may not be able to help w/fundrasiers or talk on the phone like I used to---but I still LOVE YA:) I'd love it if we can make this a site where all Ryder's followers can work together and figure this out with us.
1. Meals for our family…Lori Finto has set something up at Sousa
2. Raffle at Seton Reunion—talk to Renee Rosner
3. And fundraiser would be greatly appreciated
4. I won’t be able to afford clothes/toys for kiddos or us---if you or kids outgrow stuff, we could use it! Tyler size 7, 2 in shoes, Noah size 5 or 12 in shoes, Ryder 12mo
5. Visits or playgroups---I’ll get bored
6. Research (Leukodystrophy/ specialist, financial support, insurance) I’m getting a lot of helpful ideas---please keep them coming!!!
7. We are really trying to keep the boys lives as normal as possible. Les would like to get a bunch of kids together to play sports. Since we can’t afford putting them on a team Les is willing to coach and I am sure some of you might be willing to also. If we get enough kids together it would help all of us----kids playing sports, interacting, getting exercise—FREE for us ALL!!! Some ideas…soccer, tee-ball, flag football---and anything else out there (I’m sure Les can coach it and other parents help and take turns this will be fun We can include all ages and if we get enough kids we can have practice and games)
8. Occasional babysitting. For example—we need to take Noah out of Toybox/preschool. When I have appointments, it would be great if someone could watch Noah for me. I know Amy and Carrie have offered this. If I get a list of people willing, I can have backups.
9. Any side jobs I can look into for extra income
10. CHEAP/SAFE place to rent……On a very personal note: Our house is up for short sale (offer is being processed and should clear soon). I have had 6+ surgeries including a hysterectomy last year. That all really made us sink financially as you could imagine. We are in the final stages of declaring bankruptcy We were planning on renting after we have to move---but me not working anymore is going to put a damper on that as well. Any housing ideas would be appreciated.
11. PRAYERS
12. We’re open to any ideas you guys have as well!
Just want to give a HUGE THANKS for all the help so far!
1. Meals for our family…Lori Finto has set something up at Sousa
2. Raffle at Seton Reunion—talk to Renee Rosner
3. And fundraiser would be greatly appreciated
4. I won’t be able to afford clothes/toys for kiddos or us---if you or kids outgrow stuff, we could use it! Tyler size 7, 2 in shoes, Noah size 5 or 12 in shoes, Ryder 12mo
5. Visits or playgroups---I’ll get bored
6. Research (Leukodystrophy/ specialist, financial support, insurance) I’m getting a lot of helpful ideas---please keep them coming!!!
7. We are really trying to keep the boys lives as normal as possible. Les would like to get a bunch of kids together to play sports. Since we can’t afford putting them on a team Les is willing to coach and I am sure some of you might be willing to also. If we get enough kids together it would help all of us----kids playing sports, interacting, getting exercise—FREE for us ALL!!! Some ideas…soccer, tee-ball, flag football---and anything else out there (I’m sure Les can coach it and other parents help and take turns this will be fun We can include all ages and if we get enough kids we can have practice and games)
8. Occasional babysitting. For example—we need to take Noah out of Toybox/preschool. When I have appointments, it would be great if someone could watch Noah for me. I know Amy and Carrie have offered this. If I get a list of people willing, I can have backups.
9. Any side jobs I can look into for extra income
10. CHEAP/SAFE place to rent……On a very personal note: Our house is up for short sale (offer is being processed and should clear soon). I have had 6+ surgeries including a hysterectomy last year. That all really made us sink financially as you could imagine. We are in the final stages of declaring bankruptcy We were planning on renting after we have to move---but me not working anymore is going to put a damper on that as well. Any housing ideas would be appreciated.
11. PRAYERS
12. We’re open to any ideas you guys have as well!
Just want to give a HUGE THANKS for all the help so far!
9/2 quick notes
FMLA is definitely out. After looking into it more, you can only take 12 weeks in a rolling year--which I've already used. I'm looking into Aflac, APIPA and long term care, SSI social security now while Ryder is asleep. He gets services (PT) through RISE and we will be having a meeting and see if he can now qualify for DDD.
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