rhizokids

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 – 
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31 thoughts on “Lessons from Edie

  1. Edie is just a beautiful little girl. I just love what that mother said in the waiting room because it’s so true. This is such a beautiful and heart warming post Kathleen (and family!).

  2. This is incredibly touching Kathleen. Edie is a very lucky girl to have such a wonderful loving family and at the end of the day all that matters is she’s showered with love and that’s exactly what it sounds like she’s given. Thanks for sharing about this beautiful child! And, I love that mother’s quote, you will love your child no matter what because it’s your child.

  3. (if this comment comes to you twice, please excuse.) What a little beauty! I think that it’s so important for parents to teach these lessons to their children starting at a very young age. Have honest conversations when they do see a person with special needs, a missing limb or anything else that a child could view as “different.” Children will react the way their parents do. My daughter attended a school K-6th grade that had a class for children with Downs Syndrome. Those precious children had a huge impact on my daughter as well as the entire student body. We are ALL created in God’s image. It’s a terrible shame that some people don’t get that. They are missing out on tremendous blessings.

    1. I love this. You are so right, and I have so much admiration and respect for the kind of parent you are. Much love to you and your daughter and thank you so much for sharing your kind words and experience.

    1. Aaww reading that gives me a lump in my throat! Thanks for always being so supportive. XOXO

  4. These are excellent life lessons & reminders for all of us, day in and day out. Your niece is adorable and I appreciate your family collaborating on this – thank you for sharing!!

  5. I loved this post, so open and honest. Thank you for sharing your story and reminding us to act with kindness in every aspect of our lives. What a precious little girl she is. Your family is so blessed. I love that you all collaborated on this post. xo

  6. What a beautiful post! I have a close friend with a special needs child and you really spoke to the heart of this. I love her outlook as she always says, “God gave us this child to make us the best people we could be”- so beautiful! Edie is lucky to have such a wonderful family!

    XO,
    Gentry
    Girl Meets Bow

    1. Thank you so much for sharing, Gentry! I shared that quote with my sister-in-law, we both teared up. Beautifully said. XOXO

  7. Kathleen, You expressed your sincere feelings beautifully and I plan to share as a reminder to all who pass along . Edie is LOVE and will continue to remind us what it is to love no matter.

  8. I love this and I love that sweet little girl’s face! Beautifully written and I can feel all your love behind this post Kat!

    1. Thank YOU so much for taking the time to read and share your story. A full heart of love to you and your daughter. XOXO

  9. Thank you for sharing this beautiful part of your life! I love the part of the dr. Office! Reminds me too of treating all people with such love. Sometimes we can’t always see or know of their struggle.

  10. As a new mom, this post really hit a chord. God bless the lady at the dr’s office – she summed it up perfectly. Thank you for writing this…

  11. My boyfriend has a special needs niece that he absolutely cherishes and spoils with all his heart. Since he doesnt get to see her very often, he will FaceTime her and her sisters and let her know how proud he is of her, how beautiful she is and how smart she is. Meeting her was one of the greatest experiences of my life. It’s an incredibly special gift to be blessed with one of these touching little angels. I can’t wait to see future stories about E! xx
    Jess | Dirty Blonde Barrage

    1. Thank you so much for sharing, Jessica. This literally put a lump in my throat! What a sweetheart you have for a boyfriend! He’s so lucky to have someone as considerate and tender-hearted as you. XOXO

  12. What a beautiful child! She has such a light in her eyes in all of her photographs. Blessings and peace to your family.

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