When Abby was first diagnosed with Rhombencephalosynapsis the doctors made sure to inform us how incredibly rare it was. They explained that it happens at a certain gestational period but the specific cause is unknown. I have always thought the fact that Abby is a twin and her twin does not have RS is very interesting.
Life with twins is interesting. Life with one twin who is atypical and one who is more typical (although Grace her fair share of developmental issues unrelated to RS...) is even more interesting. We have to make sure we meet the needs of each girl since they are twins. We also have to make sure that the more "needy" twin doesn't get more than her fair share of attention. It has always been a balancing act.
The amazing thing is that Grace has turned into such a caring and nurturing child. She won't let anyone pick on her sister. She will make sure she is included, even though Abby is socially very awkward. She cares so deeply for her sister it amazes me to watch.
Recently we took the kids to the park that has a fair amount of accomodative play equipment. We love this park since the girls can both do their thing without us hovering. The girls were playing when Abby fell off of a climbing ladder. The floor is padded so it wasn't catastrophic but it still hurt. Grace immediately came running to Abby apologizing for "not remembering that Abby has terrible balance"... From the mouth of a five year old.
In that moment it felt so bittersweet. The sweet in that she cares SO MUCH for her sister. The bitter in that she felt responsible. Like if she had slowed down her play than Abby wouldn't have fallen. I don't believe for one second that Abby hold Grace back. They both move at their own pace. That doesn't mean Grace doesn't slow down sometimes to move at her sisters pace. I just can't help but wonder how this will effect them and their development later on. I think being twins makes them stronger. It helps them grow and learn and keep pace. They challenge each other in wonderful ways.
Some day Grace will be writing her own blog post on being an RS twin. Until that time I pray that she will tell us all how enriched her life is because of her sisters diagnosis.