Some of y’all may know about one of my three nieces, Edie. She’s my darling almost three-year old niece (on 3/5 the day after Christian!), and she has a genetic disease that has left her with several disabilities.
Many of you may have read about her here or here, or maybe you know my family and you’ve read Edie’s CaringBridge page. Edie has a chromosomal abnormality called rhizomelic chondrodysplasia punctata (most often referred to as the abbreviated RCDP). As a result of this disease, Edie has severe physical growth deficiencies as well severe mental deficiency. Cataracts, seizures, feeding problems (she cannot swallow), respiratory problems, and many other issues also occur. I could tell you more about the struggles both Edie and her parents face, but rather, I’d like to share what I’ve learned about talking and reacting to parents and families of special needs and terminally ill children.
What’s been pretty incredible to me is how having Edie in my life has opened doors to meeting so many others who have or have had special needs family members. It has been so comforting to relate to others and their stories and experiences. Chances are you know someone who has a special needs family member, while they may or may not have even told you. While I’m not claiming to speak on behalf of all special needs parents, I am sharing some tips and lessons I’ve learned from my family over these past two years.
1. Please don’t stare. When you notice someone in a wheelchair, or someone who looks like they may have a disability, it’s normal to be concerned, curious or confused, but often we stare and make expressions without even knowing it, and this is offensive and hurtful.
2. It’s ok to ask questions when it’s coming from a kind place. It’s common to approach a little baby and ask the parent how old she is, that’s ok. It’s better to ask a question you might ask any parents of a child – what her name is, comment on her dress or hair, ask about her age – it’s better to kindly ask questions if you’re interested rather than stare.
3. If your heartstrings are being pulled when you see someone struggling to check out at a grocery store with a child in a wheelchair or when they’re trying to go somewhere with a special needs child and a cart, etc., offering to help can mean so much! Recognizing that their life is probably a little more difficult than the average person and offering a hand – it can mean a lot.
4. Compliment the child on their bow, dress, shoes, anything. Speak to the child and engage with them just like you would a normal kid. Just a brief kind word can mean so much.
5. My sister-in-law was in the waiting room of a pediatricians office when Edie was over a year old. There was another mother in the waiting room with a five-month old daughter who was a similar size to Edie and already more advanced than her. The mother was asking about Edie and how old she was, it led to Anna telling her that Edie had a genetic disease that affected her growth and development and wouldn’t be able to live like a normal little girl. The mother said, “well who cares. That’s your baby and you love her with all your heart anyway.” This will be a lifelong memory for Anna and that mother’s honesty and appreciation for the fact that your child is your child no matter what – is what it’s all about.
I am not kidding when I say my entire family wrote this post together when we were celebrating an early Christmas in Malibu – so I have tips from everyone! My mom’s best friend sent us this book, and we loved this quote from the author, “When given the option between being right, or being kind, choose kind.” Have something to contribute from your own experience? I would truly love to hear. Thanks for reading. XO –
1. Please don’t stare. When you notice someone in a wheelchair, or someone who looks like they may have a disability, it’s normal to be concerned, curious or confused, but often we stare and make expressions without even knowing it, and this is offensive and hurtful.
2. It’s ok to ask questions when it’s coming from a kind place. It’s common to approach a little baby and ask the parent how old she is, that’s ok. It’s better to ask a question you might ask any parents of a child – what her name is, comment on her dress or hair, ask about her age – it’s better to kindly ask questions if you’re interested rather than stare.
3. If your heartstrings are being pulled when you see someone struggling to check out at a grocery store with a child in a wheelchair or when they’re trying to go somewhere with a special needs child and a cart, etc., offering to help can mean so much! Recognizing that their life is probably a little more difficult than the average person and offering a hand – it can mean a lot.
4. Compliment the child on their bow, dress, shoes, anything. Speak to the child and engage with them just like you would a normal kid. Just a brief kind word can mean so much.
5. My sister-in-law was in the waiting room of a pediatricians office when Edie was over a year old. There was another mother in the waiting room with a five-month old daughter who was a similar size to Edie and already more advanced than her. The mother was asking about Edie and how old she was, it led to Anna telling her that Edie had a genetic disease that affected her growth and development and wouldn’t be able to live like a normal little girl. The mother said, “well who cares. That’s your baby and you love her with all your heart anyway.” This will be a lifelong memory for Anna and that mother’s honesty and appreciation for the fact that your child is your child no matter what – is what it’s all about.
I am not kidding when I say my entire family wrote this post together when we were celebrating an early Christmas in Malibu – so I have tips from everyone! My mom’s best friend sent us this book, and we loved this quote from the author, “When given the option between being right, or being kind, choose kind.” Have something to contribute from your own experience? I would truly love to hear. Thanks for reading. XO –
31 Comments|See Comments
