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: email@example.com. 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.
Just wanted to drop you a line. I'm sure you're busy enjoying Summer with your family :) I love summer, it goes by so quickly here in Idaho, but is such a wonderful time of year :)
Have a great day! :)
Thank you for kind words. I do have faith in God and pray every day. I find a lot of strength and hope through this web site by communicating with people like you and reading other stories. I wish Logan's parent shared the same faith in God. Since all of this has happened I have seen his parents spiraling downward. I have to be there for him, he is the sweetest and lovable child I have ever known. He doesn't deserve the cards he has been dealt, but since he has I am going to do everything in my power for him. Thanks again. I will pray for Riley, too.
I've been thinking about the trials that we all go through, and I've got to say, you dear lady, have had more than your fair share. As much as I've hated having certain trials in my life, you're absolutely correct that there are good things to be learned from them if our hearts and minds are open. I lost a sister a month before her 40th birthday to ovarian cancer. I can't believe she's been gone 10 years now. She survived 4 years when the doctors had given her a year. The last 2 years of her life, she and her daughter ,who was 12 at the time, lived with my family. She had a reaction to her 3rd round of chemo and it left her with slurred speech, ataxia, and numerous other problems. She also was wheelchair bound, as she lost her ability to walk as well. She was totally dependent for most everything. It was one of the hardest things I have ever done and those 2 years were very difficult for all of us. But to make a long story short, my entire family and I learned a great many things from that experience. I think my children learned about compassionate service, and the blessings that it can bring into our lives and those we care for.
Cancer seems to touch everyones lives these days :( I'm so sorry that it has taken away so many you love. I'm so grateful that you are a survivor. I know how much Riley and his family are going to need you.
We just had a friend pass away. He was 54, just 6 months older than my husband. July 4th, after enjoying the parade, they went home and he told his wife he was going to lay down because he didn't feel well. When she went in to check on him, he was gone. He hadn't been ill, so at this point they believe it was an anyrsm or his heart . This has been a real eye opener to me. I'm really trying to learn to live each day to the fullest, for Baylor and my family, because you just never know when you will be called home.
I know what you mean about never forgetting the day Riley was diagnosed. I still tear up remembering the day we got the phone call. I knew in my heart already, but to have it confirmed was devastating. My dad was here visiting from California when I was given the news, and I was so grateful for his comforting presence. He held me just like when I was little, and let me cry and cry until I couldn't cry anymore, and then Tim came home from work early and I started all over again.
I was wondering, what the geneticists have said about Riley and the fact that Duchenne runs on your husbands side. That is a huge coincidence, especially if Riley has a spontaneous mutation. There again, it's DNA madness, all that stuff goes right over my head.
Well, I better scoot so I can get some things done before bedtime.
Take care and have a great weekend!! :)
I just read your comment, and gosh, I wish I could just give you a big hug!
I really need to get to bed right now, but I'll write you tomorrow sometime between laundry and mopping floors :) And if it turns out to be a novel, I won't apologize! LOL :)
I'm so sorry that your husband has MD on his side of the family. Is it Duchenne or another kind of MD? Duchenne is X- linked so it definately comes through with a 50% chance of mother to son as the full blown disease, or mother to daughter as a carrier of the damaged X. But of course, it also can be a spontaneous mutation a large percentage of the time. All the genetic stuff is so confusing to me at times. Science is not my forte :( My 24 year old daughter, Maleri, had DNA testing done a few months back to see if she was a carrier. She has type 1 diabetes, and I was so scared that she would be a carrier of DMD as well. I couldn't bear the thought that her and her 2 little girls might be carriers. I was on the phone with her when she opened the letter from the University of Utah and it stated she was not a carrier. I can't even express how I felt. I cried tears of joy for her and my grand daughters. My 16 year old daughter, Jenni, wants to know her status, but they won't test her until she is 18. Not knowing her status has been hard on her. They say they won't test a girls DNA until she is 18 because it may be psychologically damaging to know if she is a carrier. Jenni would rather know now, so having to wait until she is 18 may be psychologically damaging as well. If Jenni isn't a carrier, DMD will finally end in our family. I thought it had already ended years ago, as I truly believed I wasn't a carrier. Five children, three of them boys, and no DMD over a 23 year period. Baylor was a later in life, surprise baby for Tim and I. He made an even 1/2 dozen for us, and after the initial shock that I was pregnant wore off, we were so excited :) Baylor having Duchenne never entered my mind, but when he didn't walk until 19 months old, I started to worry and when he kept falling frequently I feared the worst. I took him to his pediatrician for his 2 year well child checkup, and I started to cry. I asked the doctor to run a CK on Baylor, and told him what I feared. He told me it may just be that because he was a preemie, it was taking him longer to catch up. But he said he would order the test to rule out DMD. When I got the call a few days later from the doctor himself, and not a nurse, I broke down. I already knew in my heart, but hearing the doctor tell me that Baylor's CK was almost 19,000 hurt so much. I'll never forget that awful day. My baby comforted me all day. It was almost like he knew and understood this about himself already. Baylor is my hero and my heart. He, like my nephews before him, have blessed our family so much by being here, loving us, and teaching us so many important things. It's been over 2 years now since we found out, and I won't say it gets easier, but I guess you just get in a proactive mode, and you are so busy with all the different things to help your son, that you don't have as much time to feel sad. My heart goes out to your family. January wasn't that long ago, and there is so much to learn, and so much to worry about, and so many tears. All of us here know and understand that process all to well.
I apologize, I didn't mean to write a novel! I guess it's my therapy :) I
Have a great day!! :)
THANKS FOR INTRODUCING YOURSELF. I'M SOOO GLAD I FOUND YOUR DAUGHTER. SHE'S BEEN A GREAT PERSON TO TALK TO AND LORI ALSO. THEY HAVE BEEN SUCH A BIG HELP TO ME IN THIS NEW ERA OF MY LIFE. YOU HAVE TWO BEAUTIFUL GRANDKIDS. I CAN'T WAIT TO MEET ALL OF YOU. KEEP IN TOUCH.
Hi Marla! This is Marla! I live in a little town of 2500 people, and there are 2 other Marla's that live here (crazy, Huh?!). I had only met one other Marla in my life, until I moved to Malad. Rhi wrote me one night when I was pulling my night owl routine. What a sweet heart. Her 'I will not apologize' blog was so touching. You and your husband must have done an amazing job raising your girls. I love that you are so involved with your grandchildren. My parent's have lost 2 grandsons to DMD, and I know it's very difficult for them to see this happen again. They are as supportive I guess as living 600 miles away allows. They are getting quite old, and are not computer savy, so that also limits their involvement. My 2 sisters lost their sons 16 and 9 years ago, so they were still fairly young mother's going through this. I think now, even though they know what we are going through, it's difficult for them to face this in the family again. The thing I gain strength from, is the fact that there is actually research going on now. Baylor's generation actually has a chance for a cure or treatment, and of course there is always the hope and faith that it will come sooner than later.
I hope your having a great summer!
I look forward to building our friendship :)