We both work for Lafourche Parish School System. I am a middle school principal and love that age group! Vaughn works for the maintenance department and has been a Master Mechanic for 30 years. I love to read, camp, and fish. Vaughn invests a lot of time in building and flying remote control planes.
About my family:
We have two wonderful daughters Rhiannon and Lauren. We also have two wonderful sons-in-law, Ray and Brad. Our three beautiful grandchildren are our hearts! Rhi and Ray's children are Reagan, 9 years, and Riley, 5 years old. Lauren and Brad have a son, Sawyer 4 months old. Our grandson Riley was diagnosed with Duchenne in Janurary 2008.
Name(s) of child(ren)/individual(s) with Duchenne:
Age(s) of child(ren)/individual(s) with Duchenne:
Comment Wall (33 comments)
You need to be a member of PPMD Community to add comments!
My name is Marharita. I am from Ukraine. I have a son with muscular dystrophyDuchenne. He is 9,5 now. I want to invite you with your family in our country. I am 42. I work an economist. My husband works too. He is 47. Yet I have a daughter. She is 18. I would like how you live and will lesten how you live in your country with your problem. My email: firstname.lastname@example.org. I will ready you connect on scype: Alina. phone: +380504870457
I think Lori or one of the other Moms tailgating with us that weekend told me about Riley being sick. I emailed Rhi after we got back and she said that natsy bug got the entire family. So far we've been very lucky with Nicholas only getting a few colds. We had a great time getting to know the other families and being at Tiger stadium except for LSU losing the game. Several of the Moms were very creative and the kids had a blast. Our associate pastor, Rachel Poysky, brother (Brad) was the person that made the pitch to the AFCA and got us on board for the next three years. I had the opportunity to meet him this morning since they were in town visiting. I hugged him and told him how much all of us with DMD boys appreciate his efforts. I think 'Coach to Cure MD' will be even bigger and better next year.
Hope you and Vaughn had a good Thanksgiving. I spent it in Shreveport with some family. Both my sons go to the in-laws (Lafayette and New Orleans) for Thanksgiving. I couldn't wait to gsee Nicholas after church today and him and his little sister came over to spend the day with me. We are very lucky to have our grandchildren so accessible. How is little Sawyer doing? Is he trying to keep up with his older cousins?
Erin & I are planning on going to PPMD's annual conference in Atlanta next year. We've never been to one because we're always traveling and vacationing somewhere but I'm hoping it all comes together for us to attend next June. Brett, Nick's Dad, said he would take care of the children if we wanted to go so right now that's the plan. I think Rhi said she went last year. Boy, that girl doesn't waste time. I admire her so much.
In case we don't talk, I'd like to wish you a Merry Christmas and Happy Holidays! Hope we'll be able to get together before too long.
Sure hope you are coming to Baton Rouge to tailgate with us this weekend. We're leaving Friday afternoon and will be setting up Sat. morning early. I'm looking forward to meeting your family.
Hey there Marla!
So good to hear from you =)!!
I'm so glad that things are getting back to normal for you at home and school =) I can't believe what you all go through down in that part of the country with those darn storms!! Bless your hearts!
I know what you mean about the technology. We really are spoiled now with all the gadgets that have made life so much easier. My kids just shake their heads when I tell them that we never had a microwave until 1988! They just can't imagine a life where you couldn't 'nuke' leftovers. I say to them, ' tell me about it! Reheating spaghetti was a nightmare!' LOL!! But of course, PC's, the internet, and cell phones just to name a few, are amazing!! I don't know how we got along!! I guess it was doable because we just didn't know better back then. We've all become techno junkies!!! LOL
I bet you had so much fun with your grandsons! You are one brave Grandma(and a wonderful mom) to have both boys overnight at the same time! =)
Well, I guess I better get Baylor bathed and into bed.
You take care, and please keep in touch =)
Just wanted to say "Hi!" and say how happy I am that Hurricane Gustav came in with much less fury than was anticipated. I hope you all weathered the storm well in your neck of the woods.
Have a great week!
Hi Marla and Vaughn, My name is Sylvia Gilchriest and I am the Mother of the cute girl in the picture (my daughter Wendy) I am the grand-mother of the cute little boy Nathan. Thank you for the welcome letter. I am so sorry to hear of the discovery of Duchene's for Riley. I know the feeling of the arrow that pearces the heart with news like that. I try real hard to live in the present and know that it is called the present for a reason. You sound like a real active fun lady. I hope to meat you at some point. Love and best wishes for you and your family. God Bless!! Syl
Hi Marla and Vaughn. Thank you for joining our Community and supporting Rhi. Thought you might be interested in joining Family and Friends Group.We are hoping to get a great start there even though you joined the Grandparents group, it could still help us all.
Hello, thank you for your sweet welcome. I am actually joining the community on behalf of one of my students and his family who invited me to join the Ally group. I am so glad that there is so much support here for everyone.
It was so good to hear from you :) How wonderful that you and Vaughn are getting away! :) I believe that is so vital to a marriage.
I'm really glad you are able to vent. I think sometimes we have to talk about it more than at other times. It seems like, in me anyway, that the sadness and pain tends to build up, and it overflows to the point that it can be toxic to my health if I don't have a good cry, or vent session with a dear friend. My best friend has a 12 year old son that had cardiac failure when he was five years old and they almost lost him, but thankfully the Lord watched over him. He was diagnosed with Long QT syndrome and had a pacemaker put in. Although it is completely different than MD, she understands the frustration, anger, sadness and hurt of having your child have a serious illness, and is so supportive and understanding when I need to cry on her shoulder, and vise versa. I have other friends that I wouldn't turn too, but thats OK, I've learned that some people don't know how to react, or what to say, it doesn't mean they don't care, just that it is difficult for them.
It is so hard to see the weakening in our boys :(
Baylor knows his limitations, but I don't think he realizes yet that he is different than other kids his age. I'm grateful for that. I dread the day that he comes to us and wants to know why he can't run or jump like the other kids do :(
Has Riley asked any hard questions yet?
I pray every day that the Lord will bless the researchers to find a cure for all our boys . Hope, faith and prayer, I don't know what I would do without them.
Anyway, you have a good week, and have a great get away in New Orleans!
Talk to you soon.