Does Your Sibling Accept Your Disability?

This is a question I see on many social media posts on special needs children. There is usually a yes but sadly there are nos. Not all siblings deal with a disease of their sibling well. Some rally with them. Some pretend it isn't happening, and others are just mean.

As a parent of a special kid, I have both. I have one of her siblings that is her best friend and really tries to help her. And she has two sisters that have completely left. I mean, no contact at all. As soon as they were old enough to leave, they did.

My daughter tried to keep in contact, but it was hurting her so much that she had to give up. It was affecting her health terribly. She was diagnosed at 11. At the time she had 8 months to 2 years to live. (that was 11 years ago) A severe, rare, aggressively progressive heart/lung disease. In the beginning, all I could do is try and keep her alive while being a single mom of four daughters. Needless to say, it was a bad year for us all. The oldest was starting high school, third was going into 5th grade, and the baby was a 2 year old baby. The blessing was that the baby has never known her well so she has never looked at her different.

I did the best I could not to obsess but I did. How do you not when you think your kid is dying? I still (so I thought) did what had I to for the other girls. It was the 5 of us against the world for a couple years. Then the panic died down and we were left with a disease. An everyday thing that is very unpredictable. There were times I had to leave a recital early, times I had to stay home with her, Dr appointments lasted all day. But I still thought that I stretched myself enough for all. I apparently did not.

The oldest pushed her away when she became a teenager and was isolated in the house and home schooled. She just wanted friends and to hang out with her sister. Her sister was mean. She verbally abused her by making fun of her. What's worse is she got her friends to do it as well. Most of this was kept from me because she didn't want her sister mad at her. I had talks with the sister about it. I asked if she needed more time with me. We were always really close. She used to sit in bed with me and talk about life. Never talked about her sick sister though.

Fast forward.....the sister goes to boot camp and gets hurt. Cannot complete it and was honorably discharged. The year she was there she wrote and called. Then something happened when she got out, no one knows what and we didn't here from her again. My daughter tries to keep the peace. Tried too many times to call, to be ignored. Tried to text, to be ignored. The last time they spoke the older sister asked what was going on and she started to tell her (her health was super bad at the time) She was interrupted by, "why do you always have to be sick and talk about it". It was devastating! They haven't spoken since. That was months ago. This has been going on for 6 years.

Her younger sister just turned 20 and hasn't spoken to anyone in 2 years. We were close as well. Her sister wasn't living at home anymore. But then she found out she was coming home. She had been in Ca talking to Drs and becoming a part of a research group for this rare disease. Just before she made it home, she left. Sister tries to keep the piece and asked why. She really thought something was going on with her. She got told "I wish you would have died so you didn't ruin my life". Cannot express what that did to either of us.

The horrible thing about this is that the baby has lost two of her sisters and doesn't know why. She is 13 now. Great kid. She doesn't know her oldest sister. She tried calling and texting when she got a phone and was ignored. She deleted the number. She doesn't think highly of the other one because she just left. No goodbye, nothing.

You can't talk to people who don't want to talk. I don't feel bad. I did my job as a mother. I am sorry they don't appreciate what I put myself through. But that's ok. I am sorrier that they don't respect what their sister has gone through and is going through. That is the one thing I question, what could I have done different? They are responsible young women, they have jobs, cars, they are independent. I did my job. I kept my kid alive when everyone had her dead. I did my job. And the baby is thriving. I'm doing my job.

My daughter has gotten over it. She is strong in so many ways. It's not that hard to move on from the past. But some things can't be moved from. This disease is here and always will be. Ignoring it won't make it go away, ignoring the person who has it will not make it go away. Accepting it would be ideal. It is the one thing I wish for those two.

If you have a story you would like to share about this subject, I would love to hear it.