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Comment by Loretta Smith on September 12, 2008 at 7:46pm

Dear Jacobs Mommom,

I am sure that most of us understand how you feel. It is almost like a security blanket when we are with our grandsons. We can interact with them and do not feel so helpless. When we do not have them close, the thoughts of hopelessness and feelings of guilt can overtakes us. Sometimes I allow myself to have a good "cleansing" cry and then I get up and get going. I think that one thing we can give our grandsons is to seek joy in other things and ways. It is not good for us or our grandsons to only concentrate on their disease. My Zachary is 14, he spends a great deal of time on the computer. It is awesone the things he has taught himself to do. He is a big stay at home person. I think his sense of security is there. I have found that this does not mean they love us any less, it is just that they are growing up and like most kids doing their own thing. Your Jacob could also be experiencing some fears, especially if he is becoming physically weaker. You might want to talk with your doctor about your feelings. I did mine. I will keep you and Jacob in my prayers.
I understand what you mean about being a soul mate. My daughter-in-law said that Zach and I have always had a special relationship. I am so fortunate that she knows that and is happy about it.

Loretta Smith

Comment by Jacobs Mommom on September 9, 2008 at 10:13am

I'm having an extremely tough time of it right now. Any suggestions?
Jacob is my soul mate and we are together mostly every weekend. He stays overnight Friday and then I take him to special equestrians and in the winter we go to the YMCA to swim after that.
Lately Jacob has wanted to stay home or is torn between home and staying with me. I understand that he's into computers now and there's more to do at home especially with the way the weathers been lately. I do okay when I have Jacob with me on the weekends and we have things to do but when I don't get him it's very hard for me to stay positive and the negativity comes rushing in and all I want to do is sleep.
I have friends that I could go see but even though they say they understand they really don't and it's not their fault. This feeling of dread is with me all the time anymore.

Comment by Loretta Smith on August 27, 2008 at 6:03pm

Our grandson, Zachary, is 14 years old. I can remember so well when we were told of his diagnois of Duchenne. We have watched him go from a little boy sitting on the floor to one who spends his life in various wheelchairs and a recliner. I can only tell each of you that as you go through this experience with your family, that you will gain so much encouragement and strength from your gransons who are suffering from this horrific disease. Just three days ago, Zachary said, grandma I don't want to h urt anymore. I want to do things like the other kids. I try not to cry so nobody will be sad. I told him how special he is to us and how happy I am to be his grandma and said why don't we just cry together for a little while. Well we did. Sometimes we just have to join them in knowing this isn't fair. After that, I talked with him about all the things he can do and that he needs to let the others know at school just how smart and capable his is. I will never give up hope and belief in God for our grandsons.

Loretta

Comment by Sylvia Gilchriest on August 4, 2008 at 12:48am

Our Grandson Nathan was diagnosed with Duchenne's just before his fourth birthday. He just turned 7 in June. We where devastated with the news and I just remember going to our church and cyring and crying for hours. I still tear up if I let my mind go there. We are a very close family and try and help our Children as much as possible especially with the care giving.
Josh is Nathan's brother and he has opids syndrom so between the two we are kept pretty busy. We live in Carmichael, California and our kids are only 3miles from us. Nathan and Josh are droped off eac morning around 8 am. and we have lots of fun with them until Mom picks them up around 6pm. I need to go get my rest as tomarrow they will be here full of energy ... Sylvia

Comment by Janet Moses on July 3, 2008 at 9:49pm

My beautiful grandson, Logan, was diagnosed with DMD today July 3, 2008. I can't stop crying. We live near Kansas City so he will be going Children's Mercy Hospital for his medical needs.
I never even thought anything like this would happen. Logan's Mother is adopted so we don't know about her family medical history.

Comment by Marla & Vaughn Tabor on June 24, 2008 at 9:33pm

Hi!
Our grandson, Riley Traigle, was diagnosed with DMD on January 24, 2008. As you have already experienced, our world came crashing down on our heads with the news. Fortunately, our family is strong so we have pulled up our bootstraps and are ready to do whatever it takes to help Riley and all other children with MD.
We live in southeast Louisiana (cajun country) but will travel to Cincinnati for Riley's medical needs. Hopefully, his first visit will be this summer.

Comment by Jacobs Mommom on June 18, 2008 at 11:25am

Hi Anita:
My grandson, Jacob, will be 8 in July and was diagnosed with DMD in Feb of 07. We live in Lansdale, PA and have been to Cincy twice but mainly use CHOP in Phila.

Comment by Anita Bullers on June 15, 2008 at 1:55am

My grandson, Nicholas, is 5 and was diagnosed with DMD shortly before his 4th b/d. We live in Houston and he goes to Cincy to Dr. Wong.

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