Sunday, May 3, 2015


I have been doing a lot of thinking regarding Becca lately and what she must feel having Ian as a sibling, not just any sibling but a twin sibling to boot. I know what it is like to be Ian's mom and I have shared that many times I am going to try to share some of my thoughts on Becca.

I did a little bit of reading on the internet as well as some books I have purchased over the years. How do you think you would feel, how do you think your children would feel if the other one had a disability. I am not sure if matters the severity of the disability, more just the fact of having one.

From reading things there are good and not so good times with having a sibling with a disability, yes just like with having a sibling in general. I remember when I sent a photo to Becca at camp this summer of Ian swimming for the 1st time in years. From what I was told by those who showed it to her, her reaction was priceless, extreme happiness and joy, so proud of him. Then there are the times when Ian goes into the hospital or just had his surgery...extreme fear and worry, along with anxiety of the unknown and if he would make it through.

Then there are the feelings of anger, resentment, jealousy, embarrassment, guilt, sadness, scared, anxious, loneliness and stress. Yes, I know that other pre-teens and siblings have the same feelings regarding their siblings, however, in most situations others can understand why they have those feelings. Having a sibling with special needs makes it harder to find others who can understand your feelings and have some of the same ones. 

With anger, resentment and jealousy...Becca feels that Ian gets all the attention, or that the rules and responsibilities aren't fair. She is sometimes resentful because she can't do things she wants with Brian or I. While we do our best to explain to her why things are the way they are, sometimes we don't even understand them so getting her to understand...yea doesn't happen. In addition, we do our best to get her to places if we can't be the one to take her but as we all know having mommy or daddy there with you is better.

Embarrassment and guilt...there are feelings which Becca has not actually shared with us but I can only imagine she has them...most of the people who come to the house are people who have grown up with Ian and Becca, so they have seen the changes and know what we have been going through. Becca has not brought any new friends home since starting middle school, there is always a reason why not too... can see this on her face from time to time...trying to have some family time is hard. We can't play games like others, whether or not they are board games or Wii games. We can't go for walks and play outdoors like other families. All of our family time has to revolve around Ian and what we can manage with him.

Scared and anxious...this has changed over the years as Becca has developed as well as Ian's disease has progressed. It took a while for us to help Becca realize that she was not going to get PCH1A, that being a carrier of the VRK1 mutation is different then getting the disease. There have been times when Ian is having a rough morning and getting Becca to school is hard, she is afraid and anxious to leave the house for what could happen. Both kids are completely aware of what is going to happen to Ian, and that has all of us scared about what our family will be like in the future.

Lonely...."no one understands what it's like" these words have come out of her mouth, many, many times.

Stress...all of the above adds to stress as well as feeling like you have "to be good and not cause any trouble". Brian and I have tried to make Becca's childhood as "NORMAL" as possible, but is that really possible. 

All is just too much for a child to have to handle...but there is no choice but to handle it, for her and for us....we just do and continue to move forward. 

1 comment:

Anonymous said...

Amanda Menke I can completely relate to this blog post. I am still willing to meet up with you guys to talk to Becca if you want
Marci Weinberg Scher Amanda Menke, we will figure it out.

Heather Schmidt Young Hugs to Becca. I can only imagine how, as a twin, she must feel. A whole gamut of emotions has got to be normal. I bet she's an awesome sister to Ian.

Connie McElroy Lippenholz Hugs hugs hugs!

Annelise Sullivan She's a rock star! I hope she does bring some new friends home soon.

Marlene Ettlin ❌⭕❌⭕

Debi Gersh Van Camp Hugs

Monique Erdos-Gertner And you do well!

Anne Polakoff King Your insight and words continue to inspire.

Ruth Cohen Ross So much to deal with---one can only do her best, and it has to be good enough! So try to relax and enjoy as much as possible--I know you do that! XOX