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gifts

So Many Presents! But What About My Other Kid? Siblings of Special Needs Kids

I visited a wonderful single mom the other day. As I walked into her beautiful holly-decked living room, I noticed Cindy’s eyes were red from crying. When I showed an interest, this very capable woman burst into tears. She explained that Christmas presents were flowing in for her ill daughter and she was already feeling sorry for her eight-year-old son, Royce who was being left out of the avalanche of gifts, “Even though,” she admitted, “he has been a total pill lately.” She apologized for … [Read More...]

Recent Blogs

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Summer Camp: A Practice Run for the Real World

Summer camp: starry nights, fun in the sun, adventures, friendships. Summer camp holds so many opportunities for all kids to enjoy and grow. It also provides an opportunity for parents to grow, too. This is especially true when a child has special medical needs. My teenager daughter is in Hawaii right now for spring break […]

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It’s Not Just a Little Cough…. Learning Life Lessons in New Ways

I rarely get sick. Yet I spend a lot of time each month in doctor’s offices and hospitals. I don’t work there, either. Maybe I should! I have two teenagers with cystic fibrosis (CF) and our lives are a constant stream of doctor’s appointments, hospital visits, lab tests, insurance company calls, and hours each month […]

bumps ahead

Avoiding the Bumps in the Road: Essential Tools and Tips for Parenting Children with Health Issues

Parenting isn’t for the faint-hearted! Raising kids throughout their developmental stages is tricky enough; parents of kids with health issues have to face additional challenges along the way. When we know where the bumps and potholes are, it becomes a lot easier to avoid them! So let’s take a look at some of the challenges […]

Unexpected Blessings

The Unexpected Road to Unexpected Blessings

There is no way to prepare yourself for hearing the words: “I am sorry but your child has cystic fibrosis.” In our case, we had never heard of CF; no family history, no warning, no reason to suspect anything was wrong. Until we had an ultrasound two weeks before my due date and our ob-gyn […]

School and 504 Plans

Give Your Child’s 504 Plan a Checkup

By Lisa C. Greene It’s that time again! It’s only three weeks into summer break and I am already thinking ahead about the next school year. I need to plan ahead because both of my children, now teenagers, have special medical needs. In many ways it was easier when they were in elementary school. There […]

believe

Believing in New Possibilities for the Future

By Lisa C. Greene Today, my daughter said a phrase she uses a lot: “When I’m a doctor someday…” and for the first time, ever, my heart didn’t falter at wondering if she ever would be. Today, for the first time, I have a realistic hope for my children’s futures as doctors, engineers, parents and […]

dreams

Finally Daring to Dream

by Lisa C. Greene What is it like to experience that moment of hope realized? When, after holding your breath for what seems like years, your dreams come true? Today, Vertex announced that they had good results with a medication that may possibly save both of my children’s lives and, at the very least, give […]

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Panic or Anticipation: Are You Enjoying the Summer?

Want to be a happy mama and papa? Want to know the key to having a great summer with your kids? Raise children who are creative. Of course, creativity has to be combined with self-discipline. If you have a creative child who has no self-discipline, then you have raised “the child from hell.” After all, […]

support

Part 1 of 2: Caring, Connecting and Compassion: The Do’s and Don’ts for Giving and Receiving Support During Hard Times

A mom shares her frustration:  “I’m exhausted, overwhelmed, and wiped out. My friends try to help but they just don’t understand. When I talk about my child’s illness, it makes them uncomfortable. Then I feel bad for burdening them. I feel so alone.” What is support? Support can mean different things to different people. Certain aspects of our […]

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Part 2 of 2: Caring, Connecting and Compassion: Do’s and Don’ts for Giving and Receiving Support During Hard Times

In our last blog of this two part series, we looked at what support is and isn’t. Here are the do’s and don’ts for giving and receiving support. Tips for giving support: Before giving support, ask if the other person wants it. “Do you feel like talking about this now?” Of course if they say […]