Today I’m focusing my ramblings on a one of the toughest chics I know. Before I introduce you to Dallas, I need to introduce you to her nemesis, Systemic Scleroderma. I had not heard of Scleroderma prior to meeting Dallas. In fact, I had to ask Lucy, Dallas’ mom for some basic information in order to convey it to you guys.
Scleroderma is rare and chronic. Scleroderma is an autoimmune disease. Scleroderma is “the body attacking itself.” Scleroderma is “4 times more common in females than males.” Scleroderma affects “skin and internal organs. Scleroderma can be “life threatening.”
Scleroderma causes the skin and tissues of the body to harden and swell.
Scleroderma is not curable.
Scleroderma affects 276 out of every 1,000,000 people.
Most Scleroderama patients are diagnosed between the ages of 30 – 50.
With Scleroderma, there is an 85% five year survival rate.
Hopefully after that quick run down, the name of this autoimmune disease is branded on your heart forever.
Dallas is ten years old. She was diagnosed with Scleroderma when she was three. She endures weekly infusions through a port in her chest. Dallas’ medications include: methotrexate, steroids and IVIG.
Whew – now that all of that is out of the way, I will tell you about a little girl who inspires me.
I met Dallas while subbing at Covenant. She and I hit it off from the beginning. I can’t explain the connection, just trust me when I say there is one.
I knew that something ailed my little friend when I noticed that she struggled to walk at times. It seemed to me that her ankles didn’t bend like they should. I met Lucy, Dallas’ mom at an end of the year party and so wanted to ask her about Dallas but how do you start that conversation? My suspicions were once again confirmed when Dallas left the party early. She had just had a “treatment” and couldn’t be in the sun for extended periods of time. Again, this inquiring mind wanted to know.
The end of the year came and went. I was still unsure of what ailed my new little buddy.
I assumed a full time position at Covenant last year. I was greeted early on by Dallas. People, believe me when I tell you that her smile will melt your heart. Dallas was too young to be in my class but she and I made it a point to see each other during the week. If I didn’t seek her out, she would stop by my room.
Around October, I started a crochet club after school. Dallas asked if she could join. Um yes! Her grandmother had taught her how to crochet. A kindred spirit, as my granny is the one who passed a love for crocheting down to me. Dallas would be there every time I had a “meeting.” She would sit in a chair, the floor being to hard on her, and crochet. She made necklaces, a pot holder and a tiny little hat for Sunflower, the class hedgehog. She even taught a few of the other kids to crochet.
Dallas and I fostered our sisterhood crocheting after school.
She is the strongest 10 year old that I know. She is one of the strongest young women I know. I’d venture to say, Dallas is one of the strongest people I know.
Her little body hurts all of the time. She however, always has smile on her face and gives a thumbs up when asked how she is doing.
I found it freaking awesome that Dallas spends as much time as she can on her dirt bike. I love that her parents haven’t protected her in bubble wrap. They let this girl be a kid! They don’t focus on the Scleroderma. Only giving it a nod when it knocks Dallas down to the point that they have no choice but to acknowledge it.
Dallas shows up to school after treatments when other kids and adults alike would curl up in a ball. She is a rockstar.
Covenant families and teachers were privileged to witness the stuff that movies are made of this year. Dallas wound up in Texas Children’s for an extended stay towards the end of the school year. Up until this point, her classmates knew she wasn’t well but they didn’t really know what she suffered from. When Dallas went into the hospital, people started asking questions. Dallas’ teachers Mrs. Dorough and Mrs. Van Bruaene were left with the task of explaining to the kiddos where Dallas was and what was going on. They handled this delicate situation with grace. Heck, who am I kidding, they were rockstars also.
Dallas’ classmates rallied around her in a way that still gives me goosebumps when I think about it. Many of the parents didn’t know that Dallas was a sick little lady. Then there were those who knew something was up but like me, didn’t know how to ask those questions.
Families sent flowers and gift baskets to the hospital, full of things to keep this young lady busy. So much “love” in fact that Stacy, a friend of the family gathered all of “it” and delivered it to Dallas’ house. It’s safe to say that Dallas felt very loved and supported when she arrived home.
She came back to school pretty quick after being discharged from Texas Children’s. The conversation had been started while Dallas was in the hospital. Now, she got to participate. Her classmates had questions and she had answers.
I think this conversation was super important. It gave Dallas a chance to explain Scleroderma in a way that her classmates could understand.
Some will use a story like Dallas’ to ask why. Why is God allowing this little girl to suffer? Why doesn’t God just heal her? If you have read my ramblings, you know that I am a believer. You also know that I don’t think as believers, we get a free pass or a life without suffering. The relationship that we seek with our Heavenly Father is what gets us through life be it the good, the bad or the ugly. “It is what it is.” This young lady has an incredible testimony. Yes, she gets angry at times. She questions. Our Savior is a big boy and can handle our anger and questions. I am sure that she has a pity party every now and then. I completely understand that. However, this pint sized warrior gives life everything she’s got. At the age of ten, she depends on Jesus to get her through. I hope and pray that she can hold steadfast to that love and faith, as she gets older.
I think I have figured it out. The common denominator between my little buddy and I. We understand each others pain, anger and frustration, even if very different ailments. We also understand that on good days, you gotta live. Thank God her parents. Thank God they left her be a kid! Good days are precious and soaked up to the ninth degree.
Watching her maneuver through life makes me want to be stronger. Watching Dallas reminds me to have a smile on my face and give a thumbs up when asked how I am doing. Her strength and level of maturity amaze and inspire me.
Dallas, you are my hero! I love you to pieces kiddo!