Life with a rare disease is often portrayed as a series of challenges. But these 20 word pictures from guest blogger Laura Spiegel show the enchanting life of a little girl who happens to have cystic fibrosis. 

Sometimes, I think my daughter’s cystic fibrosis is the least rare thing about her. She dazzles brighter than a thousand suns and lives with a gusto entirely her own. Here are 20 enchanting moments of her seven-year-old life with a rare disease.

1. She parades down the street in heart glasses and a ladybug umbrella, but only when the sun is shining.
2. Her Dairy Queen order is unfailingly consistent. A rainbow popsicle with a unicorn on top. To date, DQ has yet to stock this delicacy.
3. She delivers flower petals and small notes to our neighbors. Not the kids, but the adults. Doesn’t matter if she just met you. You’re getting a doorstep delivery.
4. She wrote a book about a boy named Smyth. Everything in Smyth’s life came up roses…until he was snatched from his room by a blob.
5. She recently told me that her brain hid under the covers at night with a flashlight and a scary story. That’s how bad dreams are made. 
6. She’s developed a newfound love of plant maintenance. Watering is her jam. Lest we forget, a sign reminds the rest of us to “keep out.” P.S. She “means it.”
7. She wants to sell the lawnmower. Moving forward, she will be plucking the grass by hand.
8. Her favorite outfit is a red Minnie Mouse shirt, magenta pants, and orange knee socks adorned with spiders. Beware the socks. They bite.
9. Last Christmas, she gave me the best gift I’ve ever received. It was a book by Lisa Wingate. She found it on Amazon by searching for “chapter books for moms.”
10. She has requested a twin sister named Ellie. The sole purpose is for playing tricks on others.
11. She makes Unicorn Squad videos on the regular. Most feature hulahooping or other amazing feats. One was a 45-minute tutorial on how to dust a barstool.
12. She went wild with the temporary hair color while I was out. It’s not so temporary, but she sports her blue patch with pride.
13. She spent all her money on a globe, then made a list of places she wants to travel. First up: Alashankou, China.
14. Six months ago, she wrote a song about a mermaid and a big, bad bee. It had several verses and matching moves. I am routinely pop quizzed on what I can remember. (I have yet to pass). 
15. She runs a cafe in our kitchen called Cookies. Cookies does not serve dessert; just honey sandwiches with a healthy dose of red pepper seasoning. The fare is surprising…spicy.
16. Her favorite show is The Bachelor. It’s not so age-appropriate, but she’s committed to seeing if her top pick will win. 
17. She sleeps with a lamb perched atop her head at night. It protects her from nightmares, presumably by selecting the stories her brain gets to read.
18. She likes to transcribe my phone calls on the driveway in chalk. “Mommy is talking to the doctor.” “Mommy is mad at So-and-So.” Let’s hope So-and-So isn’t local…
19. She takes 213 pills each week to help her manage her with a rare disease. The bigger the fistful, the better, in her eyes. Choking hazards be damned.
20. To avoid respiratory therapy the other day, she told us that she “didn’t have CF anymore.” Mad points for creativity. 

Cystic fibrosis is a big part of my daughter’s life, but it does not define her. Sure, there are days where treatments get in the way of what she’d rather be doing. Where we have to turn down an invitation because the germs aren’t worth the risk. But seven years in, my daughter’s life bursts with a vibrancy that soars well beyond a diagnosis code. 

Like all of our children who live with special medical, developmental, or behavioral health care needs, she deserves to be celebrated for her hopes. For her dreams. For all the colors of her personality. 

And like all of our children, she leads a life with a rare disease in a way that is entirely her own.

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Concerns of siblings of children with special needs are often overlooked by parents overwhelmed by caregiving needs. In this post Jessica Temple, a clinical neuropsychologist and special needs parent, addresses sibling concerns head on.

Our oldest child began to exhibit aggression around the time his younger brother was born. He was later diagnosed with autism. We tried  to protect the new baby from being hit, pinched, smacked, but it wasn’t always possible. I felt guilty whenever something happened to the baby Now the kids are 2 and 4, and I feel guilty for other reasons. Such as focusing my attention on the sensory needs of older boy while coordinating and participating in therapies at the expense of time with his brother. This got me thinking. What do siblings of children with special needs need? How do they see things? What can we as parents do to better support typical siblings?  

Concerns of Siblings of Children with Special Needs

It is helpful to be aware of the concerns siblings of children with special needs may have. They see their parents spending time and effort on the child with special needs, and they see parents struggling to meet their own needs. They see the stress their parents are experiencing. This can make typical siblings strive for perfection so they won’t be an added burden to their parents. They become mini-adults to relieve the load on their parents. In some cases, parents ask siblings to help with the care of their sibling throughout the day. Some children are expected to be their siblings’ primary caretakers once they reach adulthood or their parents have passed away, without input about their wants, needs, and desires. 

They may believe they can’t share feelings common to special needs siblings like these:

• Inadequate time with parents.
• Their parents don’t care as much about them as they do the other child.
• Anger or resentment toward the sibling who receives more attention. 
• Embarrassed by the behavior of a special needs sibling.
• Their parents brush off their problems or concerns. 
• Isolated from friends because of their siblings’ behaviors or embarrassed when friends ask questions.

Even though their issues may appear small compared to those of the child with special needs, they are valid and important and should be approached as such. 

Managing Parental Expectations in Light of Sibling Concerns

Parents aren’t always aware of their expectations regarding their typically-developing children. Neither expectations are too low or too high are fair. It is important to set and convey realistic expectations of each child along with unconditional support. Parents also need to allow typical siblings to work through their feelings by implementing these practices:

• Provide patience, understanding, time, and guidance. 
• Validate their concerns. 
• Model ways to cope and manage emotions. 
• Allow them autonomy to choose how involved they want to be with their sibling, both on a day-to-day basis and in the future. 

It’s unfair to require the assistance and participation of typical siblings without involving them in the decision-making process. They have a right to their own lives.

Jessica will be back in a few weeks with more helpful strategies for parents who want to address the concerns of siblings of children with special needs.

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