One of the hardest parts about having a child with RS is that not only do I have to meet her individual needs but I also have to meet the needs of her more "typical" twin sister AND THEN I have to find a way to meet their specific "twin" needs. It can feel like a full time job. Our life has become a series of coming up with strategies of making our way through the world. When we go to the playground most parents of two years olds can watch their kids run and climb and play. We, on the other hand, have to juggle both kids while also finding ways to let Abby play and simultaneously keep her safe. So we "hover parent" and follow her every move? Do we let her have the freedom she wants so badly but risk her safety? What is the best middle ground?
For the most part we find strategies that work for us. We use "backpacks" (baby leashes) for both girls. We find playgrounds with Abby friendly equipment. We avoid situations where her special needs will be glaring. But then there are those things you can't get around. We, as a family, will brainstorm for weeks in advance of some things. We will pay high prices to make her life easier. My parents will devote an entire day to figuring out the best way to take Abby to the beach or get her up the stairs.
Our dilemma right now is our upcoming vacation. There are a few conundrums. How the heck can we keep her on her feet in the uneven sand? How do we keep her highly sensitive skin clear when we have to use at least a tiny bit of sunscreen? How can we avoid pizza and ice cream when the boardwalk is full of it? How can she go on rides when she is too tiny to meet the tiniest of height requirement?
This is our life. Always bunting, always figuring and planning and plotting. I guess in some respects it has made us better thinkers and more clever. Sometimes it can feel downright exhausting.