My son Tyler has Duchenne MD, and will soon be turning 12. He is usually a pretty happy kid considering, just seams lately he has been so depressed with the every day issues of dealing with his disease. He also has a learning disability with his Duchenne, so he's more on a 6 year old level rather than 12. He has been asking me more and more lately why he can't walk like his siblings, and it's not fair and will break down in tears. I am usually the strong one and will always let Tyler know that it's okay to be sad and frustrated, but that he is very special and God made us all special in his own way. I just don't know what else to say or do to help him feel better and that he belongs. We were watching an old family home movie on a DVD last night and were all laughing at how funny we all looked at Christmas parties, etc. We get to one part in the movie where it shows Tyler running to the door to see if he could see Santa, he was about 5. It was soooo cute, I said, hey look Ty how cute you are as a little boy. He got really quiet and turned away from the TV and just sat there in his wheelchair at the table staring out the window. Me and my husband said "hey Ty, what's wrong, it's okay". He just lost it, he was so upset and sad, and said he wishes he could walk or run like that again. It just tears my heart up inside, I of course hurried and turned the movie off, I felt terrible, I thought we were all having a good time laughing at the movie, I was trying to make a fun family night, but instead I broke his little heart watching himself being "outside the dreaded wheelchair".
I was just wondering how other mothers, or family members help their sons deal with the depression that comes along with having this disease in their lives.
Thanks!
Holly Kimball

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Comment by Stacy Anderson on August 9, 2009 at 11:05pm
I totally understand what you are going thru. My son, Sean, is 11 and also has been affected mentally. He is at the age equivalent of a 5 year old. He had surgery on both of his legs last March to help stretch some tendons and release some tension off of his hamstrings and his ACL's. It was so hard for him and then he started thinking that maybe he would be able to walk again after the surgery with extensive therapy. It has been over a year now and Sean has gained even more weight and still can't stand or walk. He's get very upset and cries now. He wants to know why he can't run and lift weights like his daddy or play football like his older half brother. It breaks my heart but I let him know it's ok to be angry and no matter what, I will always be there for whatever he needs. I have always taught him about Jesus and how special Sean is but lately he just crys more and says he doesn't want to be special anymore! It's so sad but I know he's having a rough day and there will be better ones to follow. Keep your head up and know that you're not alone!
Comment by Holly Cahoon on January 26, 2009 at 7:40pm
Yes it does. Thank you! That is very true, this age is hard enough in a sons life any way without having to deal with DMD on top of it. My daughters have their moments too with my Tyler, they see him struggle and it really upsets them, they are so cute with him and help me out so much, even though they are younger than Tyler they are truly sent from God to be my little saviors and to help me so much with my Tyler.
Comment by Tracy on January 26, 2009 at 8:17am
My Tyler is going to be 11 in April. I have an older son that is going to be 13 next week! (He does not have DMD) I think we also need to remember this is the age of hormone changes as well. Our boys have to deal with so much at this age because not only is it the time for puberty changes but also the average time our boys go into a wheelchair. They have so much more to be struggling with at this age. My Tyler has had his moments but few and far between but I look for that to change in the next couple of years. My oldest Cody was a blast at 10 but this last few years have been hard on him. He's going through his physical changes and also watching his brother go through some pretty tough changes as well. He (Cody) has been struggling with panic attacks since he was 11. I didn't realize it until last year. He now has them pretty much under control from seeing a counselor. I have found giving the kids an outlet such as a counselor so they can get things off their chest and making sure it is a Christian so they are also getting Godly advice really helps them a lot. I have yet to do this for Tyler but I want to since I know things are going to start coming up. I think also it is important for our kids to see what we do in times of desperation or need such as praying, leaning on a friend/spouse/ reading our bible, making sure we stay connected.

I hope this made sense sometimes I can just ramble. I also hope it helps. I'm here anytime!
Comment by Holly Cahoon on January 22, 2009 at 6:03pm
I love all the comments I have gotten back. Yes it definitely helps. Thank you so much for sharing. We praise him all the time too and tell him how proud we are of him. Some days are just harder than others. He is a strong little boy in his own ways.
Comment by Jeff Connolly on January 22, 2009 at 11:59am
Hello Holly,

I stumbled upon your post today and although I usually leave the replies to those wiser than myself, I felt compelled to share. My son Cullen turned 11 last month and sounds remarkably like your description of Tyler. When he's feeling depressed, Cullen can find a cloud inside any silver lining. He usually only gets like this late in the day when he is fatigued and tired. When these moments happen, I often find myself (as we all do) scrambling to try to make things better. I tell him all the time (in his rested moments) how proud of him I am for his "real" strength.....the kind that isn't found in his muscles......I praise him for his courage in the way he deals with all the things that "aren't fair" in his life.........I tell him he's my hero........and he is!! I have found, that if I praise and reassure him when he is happy and coping, it is easier to comfort him and bring him out of it when he gets depressed.

Hope this helps.
-jeff
Comment by Holly Cahoon on January 21, 2009 at 6:55pm
Thank you for your comments. I really does help to know their are others out there going through the exact same situation. God bless you.
Comment by Samantha Dearing on January 21, 2009 at 5:59pm
My son Justin will be 13 in April. We have been going through this. Night after night he would cry. It is always worse after we put him in bed. i think because he cant get up and move around, so he thinks about it more. Justin would tell us he hates his chair and why is he like that and he just wants to walk one more time. We tell him how God made him this way and he has many things to be thankful for and so on, but it doesnt work most time. He just gets angry. He is now seeing a therapist twice a month and seeing the school therapist every week. It has really helped him to be able to talk it out often. Hang in there!

--Samantha
Comment by Kari on January 21, 2009 at 3:50pm
God did make him special, He never makes mistakes. Have you read to him Isaiah 40? It is a great chapter and I read that to my son when he kept saying how much he hates having MD. So, I said, you know honey, I hate it too and if I could take it from you I would. But this is not what is and what is is that you do have it and then I took him to God's Word and had him read this chapter. It really helped. I know for you, you son is not doing quite as well as my son is, so I imagine it must be so much harder for you and your family. Take it one day at a time, even moment by moment. I wish I could wave some magic wand and make it all go away as it breaks my heart to see each and every boy like this and each and every family coping. But I do know this: my son will one day be perfect in Heaven with Jesus, and we have been so blessed with this trial. If I could only show you what Jared having MD has done for us, you would be amazed. Now, there are days and moments I wish he did not have it. But, I cannot tell you how much more the blessings have been and how much we have grown in character and with our walk with God. I am so glad you joined PPMD Community. You will be blessed and be understood.

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