This has been said to me a time or two in some form or other. It never bothered me. Then I read a post by someone on facebook talking about how those kinds of comments really bother her, because it is implying that a child who has a disability and isn't cute is somehow 'less' and/or that the child can't have a disability for real because she is cute. I understand how moms can feel that way, but I have a bit different opinion.
Sometimes dealing with Ilse is really hard. All the tube feeding (which I really do love, but it's still something to deal with), the disturbed sleep, the screaming from teething.... and lest you think, 'eh, all parents deal with teething screaming!' don't be so sure that it's the same. Ilse has been working on her two year old molars since before she turned two, and she's now three. Teething is super slow for a tubie. It seems like it will NEVER end. And we deal with the not walking, the not talking, the barfing, the not being able to go outside, the constant supervision because she will choke herself on her toys or furniture, the immunodeficiency, the constant med giving, washing syringes.... etc.
I love my life and I adore my daughter, but still, these things sometimes become a heavy burden to carry. When they do, God has arranged it so I can look at my daughter and thing, "Wow. (heartfelt sigh) She's SO CUTE." "Wow. I adore her smile." "My, what pretty hair." "I can't believe we made her!"
My enjoying and being thankful for those things don't mean that Ilse would be less valuable if she weren't cute. It doesn't mean that she doesn't really have a disability because those with disabilities are inherently ugly (what a horrible view some people have!). It means that God has given me a gift to help me through the hard times.
When I see her, my heart overflows with love for her. And on those days when I'm feeling a little less loving because I'm more tired... or maybe a little less loving isn't the right word. Maybe the right way to say that is on those days when I'm not feeling the joy of being a mom, the cuteness and bursts of her sunshiny personality bring back the joy and give me a bit of joy that carries me through until I'm feeling better and am more rested.
Can anyone else relate to this?