Thursday, October 8, 2009


Get It Down; 31 for 21
Something I think about nonstop was brought to the foreground on one of my favorite blogs last weekend. You can read an installment of what the Ely family is going through right now by clicking here. I feel terrible that this wonderful family is going through something so stressful right now, but they are all strong and I have no doubt that it will all work out for them. Also, Cammie hit the nail on the head with her post the other day. I love how she felt the need to defend that she wasn't doing her children a huge injustice by the adoption of sweet adorable Addy.

There are many websites and organizations that provide support for the siblings of people with disabilities, such as

I am often concerned about how Nathaniel processes all that goes on with Penny. On one occasion, I was suprised when he lashed out and said that he is not glad Penny has Down syndrome, that he is not glad Penny had to have heart surgery and almost die. He would rather have no friends and have a sister that didn't have to be sick then to have all the friends that he made through Penny and her diagnosis. I thanked him for his honest reaction, what more could I say? But many a time, Nathaniel told me how much he loves Penny, or how she is the cutest girl ever. Those remarks were completely unsoliciated I should add.

He clearly loves his sister. I know he will be a better person because of her, and that the benefits for him are so numerous I could not possibly post them all. But I need to confess something here. I worry. I worry that he will grow into thinking that he will need to take care of her. Now, I KNOW this will not be the case. If anything, she will end up taking care of him!! HA HA; he is just so careless all the time. I have no doubt that she will be living on her own one day. (or with a spouse. . . ) Strangely, this topic of living with Penny has been brought up by Nathaniel, but Scott and I try not to make it into such a big deal and we let Nathaniel know that he will not have to take care of her.

This is not to say I don't want to mold him into a man that will stick up for her. I mean, I am him mother. I should be able to mold him all I want. For example; Nathaniel and his friend "T" were in the way back seat of the van this weekend when T announced he was hungry and he would, "like some fries please." Nathaniel and T decided to share a large one, and I said fine, as we were smack dab in the middle of lunch and dinner time. When I handed the fries back to T, I asked him to give a couple to Penny, I know she would like some. T stated that he wasn't going to give her any, but yet waved some in her face and started to laugh. Nathaniel laughed along with T. I understand that this has nothing to do with Down syndrome or disability; just kid stuff, believe me, I dissed out my own share of mean stuff to my brothers. However, I kind of yelled at Nathaniel and asked him way he thought this was funny. I asked him to think about if he would like it if we did that to him, and told him that he was going to have to stick up for Penny until she had a voice. Bottom line: DON'T LET YOUR FRIENDS BE MEAN TO YOUR SISTER!

As he grows older, his comments give me a window into his own growth and development. I don't even know really how to answer to the latest thing that has come up a few times (Caveat: this is going to sound insensative, but we are talking about the honesty of a 7 year old) Nathaniel will preface his comment with an observation that most people with Down syndrome look weird, and then concludes with, "Penny doesn't look weird, right? Penny is so cute!" I am curious to know how you all would react to that. I told him that, "Yes people with Down syndrome do have different facial features, but that they look different, not weird." I also mention to him that Penny is still young and as she grows older, that look might become more obvious. Just to prepare him; yet I don't want to leave suggestions. . .

I know that it is natural for him to be curious and I welcome any questions. I would rather him ask me then to go out in the world and unintentionally hurt someone's feelings. My hopes and dreams for him are the same that any other mother would have.: I hope that he grows up into a caring, wonderful young man that will cherish a life-long loving relationship with his sister!

1 comment:

Colton's Journey said...

"Siblings" My 18 mos. son has a trach and a "few" other medical accessories... My three year old daughter has learned so much from him and his medical journey. I think having a special needs child teaches the sibling and the rest of the family tolerance and so much more. We are different now for the better and know that Nathaniel is a great brother to Penny. He will defend her to no ends. Yes, they have their jealous moments but deep down they love them so dearly! Thanks for that great post!!!!!