August 6, 2014

What Could Have Been






Jelly deserves a big brother she can play with.
Why can't we take a family vacation to the beach?
This is how how life is supposed to look.




But it isn't easy. 




  1. Oh, how I can relate to this post. I am struggling with this. I have always said that I wouldn't leave my older daughter (with a disability) at home- she'd always come with the family. Lately there have been a few situations where I, like you, HAVE left her home. Oh, the guilt. Just today I left her at home and took my youngest (3) to the fair with her cousin, who's the same as as my oldest (7). It's tough. But one thing that I've learned is that not everything is about my oldest daughter's disability. If my oldest were typical I would leave her at home in certain situations and would feel no (or little) guilt about it. But because of her disability I automatically feel guilty. It helps me to reframe things. For example, I am not leaving her at home because of her disability. I am leaving her at home because she doesn't like the noise and the heat of the fair. I am leaving her at home because I need some 1:1 time with my youngest. This helps me remember that even in families without special needs kids, family members all have preferences about what they do and don't want to do, and that's ok. It's late and I am rambling... Just wanted to let you know that this post hit home for me, and that you're not alone. You and your daughter got to spend a wonderful time together, and that's extremely important. All children (whether they have a special needs sibling or not) need that special time with mommy. Congratulations on giving it to her. Hugs!

  2. I can relate to this as well. It's SO hard to not feel sad and resentful that we can't take the same vacations my brother and his kids take. It's also awesome to go to the beach with my ASD son but terrifying because he runs into the waves, too!! And doesn't know how to swim. Even with a life vest that's tethered to me with a yoga strap... it's stressful and I usually end up crying. I'm so happy for you that you're learning something from this book and am a HUGE advocate of self compassion. I'm not good at it or anything, but I'm trying to be learning, too. Thanks for the honest words and for the reminder that the feelings of loss and grief are normal, and okay...


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