When Kate was about 6 months old, about two months after we initially learned of her challenges we would face, I remember taking her to an appointment at the Opthamology department at Primary Childrens Hospital. We were waiting in the waiting room to go back for our appointment. There was a family there, a Native American family that had driven about 5 hours up to the hospital for an appointment with their severely disabled daughter. She was probably about 8 years old, in a wheel chair, it appeared she was unable to communicate, had impacted vision, had her feeding tube pump hooked up, and seemed to be unable to move any of the parts of her body. I remember holding Kate and wondering about what our future would hold, would it be similar to this family? I saw all of the stares from others in the waiting room. As the room cleared out, and people were called back for their appointments, I heard the father mutter to his wife “They should just take a picture, it would last longer.” He was obviously upset by the stares and the whispers about his daughter.
Fast forward two and a half years later. As time has gone by and Kate has grown, it is now more evident than ever that something is different about her. Last night we went to dinner. We haven’t used Kate’s wheelchair much outside of church, since she still fits well in her umbrella stroller. We took her in the stroller. We looked almost comical, Ryan on his crutches, me struggling to push Kate, carry Eli in his car seat, and Maren struggling to get in the restaurant and sit down at a table. About halfway through dinner Kate started to fuss and Ryan had to get her out of the stroller and hold her while he ate. I couldn’t help but notice all of the stares from people in the diner, some of them curious, some of them sympathetic, some of them uncomfortable. It’s something I am used to now. It’s not uncommon to walk around with her in her wheelchair when we do use it and see people either avoid eye contact or trying to quiet their children who ask what’s wrong.
It doesn’t upset me like it did at first. If anything, it has made me more thankful for those who aren’t afraid of Kate. There are a few places that I feel very safe taking Kate. One is our ward. They are used to seeing Kate in her wheelchair and many of them come up and talk to her, touch her, get right down at her eye level and are very kind to her. Another is with our families. Kate’s cousins are used to her, they love her, they love to sit with her and make her smile. And the last place is probably at Primary Childrens. When you walk down the hall there, the doctors see her and they always smile and address her as we walk by.
It makes me thankful for acts of kindness. There is a sweet couple in our ward who have a granddaughter with disabilities like Kate’s. They always ask if they can walk her around the hall in her wheelchair when she gets fussy. Their faces light up when they see her. It’s not forced, it’s genuine love that they have for her. I appreciate that so much. It also makes me thankful for kind mothers who seem to know what to say when their kids ask what is wrong with Kate. We were at a party a few weeks ago and a friend told her daughter that Kate was extra special so her daughter knew to touch her and talk to her with extra kindness. I watched this little girl sit by Kate and stroke her hair and it just made my heart melt. This child could see the person that was inside of this little body.
What I wish is that others could all see in this precious child what we seen in her. There is this amazing little spirit trapped inside a body that won’t function. We get glimpses of this little personality every day. I have no doubt of the perfect little person that is in there. I have been thinking about what I wish could happen in our lives. I wish everyone felt comfortable enough to love Kate as much as we do. I wish everyone would feel okay touching her, talking to her, feeling her spirit. I wish people wouldn’t have pity on us, because we certainly don’t have pity for ourselves. We know we are the lucky one who gets this little perfect spirit in our home. I wish that all people could feel comfortable asking me questions instead of shying away or being uncomfortable. I know that is something that probably won’t happen all the time, but it’s my goal to help others recognize what a truly beautiful person my daughter is, inside and out. I like to sing the song “When you’re smiling the whole world smiles with you” to Kate because it’s true, when she smiles, I really think it makes people happy. She is such a blessing to us.
3 comments:
What a great post, thank you for sharing! I feel the same way :)
Very nicely put, thank you for speaking from the heart. I do believe every little step we take to raise awareness helps with this kind of progress. Educating others, just how have just done is key to understanding better. I feel the same exact way about my beautiful granddaughter Hailey as you do about your precious Kate. And God bless that little girl who stroked Kates hair. I believe it needs to be taught and understand at this young age. I wish sometimes that kindness for those who are a bit different was taught in school just like math and reading, because sometimes you just can't rely on the parents because perhaps, they were never taught either.
xoxo to Kate. It was nice meeting you and your daughter.
WE are the truly lucky ones, we get to see how wonderful, beautiful and great these little people are. I love what Chloe teaches our family. People will always stare it is our nature. I wish though like you they would just see another human being in their midst and go about their business.
Post a Comment