He asked me.... and I froze.. And dealing with sibling anger.

So it's cuddle time last night with my son Kyle (7, diagnosed at age 5), this after an already exhausting day, and I get, Mom, why do I have to keep wearing my braces, my friends don't wear braces.  Why am I shorter than all my friends?  Second graders shouldn't be shorter than first graders.  (He was around 95 percentile in height pre-diagnosis/pre-steriods - he is now in the 15th percentile)  Mom, why can't I lift my friend Trevor, he can lift me, he said I'm too weak.  I had no answers - I froze - I'm just not ready.  He didn't push it, so neither did I....

 

On top of that - like that's not bad enough - we've been struggling a bit (okay, alot), with Kyle's 14 year old sister.  The fact that she's a teenage girl is tough enough, but throw in the fact that she has been doing research on DMD and that she is now a very angry girl (quite honestly, with good reason), the tension has become extremely thick.  My heart breaks for her - she shouldn't have to deal with those emotions, being a teenager is tough enough, realizing what is going to happen to your pride and joy - her little brother - is tearing her apart.  I can't convince her she needs to get herself out of this stage.  She's smart, usually quite funny and silly, but she's definitely not herself - will she ever be?  Honestly, I didn't stay there long (ie. angry) - I didn't let myself - what good would that do for Kyle - or anyone in our family. 

 

UUGGHH - just venting...

 

Views: 54

Reply to This

Replies to This Discussion

Donna,

so sorry you are going through this. and you are right...no one should.  My daughter just turned 15 and knows the whole DMD truth. I am sure she would love to be friends with your daughter if you think that would help her. Honestly, the best thing for my girls (I have a 16y/o too) was to take them to the summer conference. They met so many siblings and several boys with DMD their age. My 15 y/o still texts one of them on a regular basis and his parents have asked her to come visit over summer....don't know if that will acutally happen, but.....

 

As for your son; I just answer what mine asks (he will be 9 in March). I recall a while back, he asked me what all his meds were for. I told him, well this one makes your bones stay strong, this one gives you energy, this one helps your muscles not feel so tired and weak. Don't know if that will help you at all. Seph did ask about his braces...he said "mom, how do boys who don't wear braces keep their bent straight up when they are sleeping?" I just said they don't...he didn't ask more.  I dread the day the BIG questions come....if we can help with your daughter, let me know. They can connect on FB or by texting....

 

Lori

You might consider looking into the JettRide for your daughter.  It's all siblings of kids with neuromuscular diseases.  4 week bike ride from Minnesota to New Jersey this coming July.

 

Contact me if you want more info.  My 14 year old son is going this year.

http://www.siblingsupport.org/

 

Hospice may know of programs for sibs in thi situation.

 

Ginny

Broomfield

I know it is hard when they start asking questions. I dreaded the day he knew the words "muscular dystrophy". However, it was not that bad ! It was actually helpful to him because he knew he had something specific wrong with his muscles. He was not just slow or lagging behind his peers, he had a reason for it and it made him feel better !
4 WEEKS!!!  I don't know if I could let her go that let alone her wanting to be gone that long.  Do they have to do the whole length or can they just do a piece of it? 

Keith Van Houten said:

You might consider looking into the JettRide for your daughter.  It's all siblings of kids with neuromuscular diseases.  4 week bike ride from Minnesota to New Jersey this coming July.

 

Contact me if you want more info.  My 14 year old son is going this year.

Reply to Discussion

RSS

Need help using this community site? Visit Ning's Help Page.

Members

Events

© 2020   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service