Phillip and Lillian's Story 

My husband Greg and I have 5 children: Phillip and Lillian, 7, Amelia, 5, Ruth, 2, and Joshua 4 months.

Phillip and Lillian were born prematurely at 25 weeks. We knew then that we would have many hurdles to face. Lillian has had many complications that started almost immediately. Most of Lillian’s diagnoses were in her first year, and she was consequently in the hospital several times that year. Just this last year she had a tracheostomy. Most of Phillip’s diagnoses have occurred since he was 4.

Our life completely changed due to the twins’ various illnesses. Our life became full of doctors’ appointments and visits with therapists. Vacation time for my husband was used up with hospital stays and doctor visits. Our debt also increased. Since Lillian got her trach, our life has changed even more drastically. She now has nursing care at home, and traveling has become very difficult.

My husband and I have learned so much because of our children’s illnesses. My husband is much more grateful for the little things. He feels that Lillian and Phillip’s struggles really make him more appreciative of his abilities. It gives him a whole different perspective on life. I am much more understanding of doctors’ schedules and the family emergencies of friends and acquaintances. I’ve learned to be more patient and flexible with my schedule. Our faith in God and trust in Him providing for our needs has greatly increased. We also have come to understand the difference between wants and needs. We really need very little. It has affected our younger children in that they are not afraid of doctors. They think going to the hospital is fun because there are crafts and parties, and they get free stuff. They are not shy or anxious about being around new people. I think they like having nurses in our house because there is always someone to talk to or read to them. They are very encouraging of others when they see them struggle. They go with the flow when plans change because of the illnesses.

There has certainly been a social impact on our lives as well. For the most part, we now have totally different friends from when the twins were born. However, the friendships that we do have are very strong. We don’t go on vacations. We rarely go out on dates. Until we started nursing care for Lillian, the other children were not able to do things unless Lillian was able to go. So we often didn’t do things because of her being sick, or it being too hot outside for her condition, or other factors like that.

My husband says he is more expressive of his emotions now. He doesn’t keep the sadness or the joy bottled up. I’ve struggled more with the sadness and fear. There have been times when I’ve been sad and worried a lot about Lillian’s health. However, it has brought my husband and me closer as we share our feelings about our struggles and fears.

I learned about Starlight Great Esapes family activity program when the twins were 3. However, we really didn’t take advantage of the program until recently because of Lillian being sick or the cost of gas or the kids just not being old enough. I also felt that if everyone in the family couldn’t go to an event, we shouldn’t go. Now that Lillian has nursing care, we are able to attend many more events.

Through the Great Escapes program, we have participated in the Christmas party, the spring CPK party, a Braves game, Versace bag- decorating party and horseback riding. We also have attended Starlight Hospital Happening events at the hospital while Lillian was inpatient.

The Starlight events give us something to look forward to and they are fun and enjoyable for everyone. It is great to see the kids having so much fun, and we would not be able to attend events like these without the Starlight programs. It is also so nice to see other families like ours having so much fun.