When I was invited to help spread the word about the Share the Sunshine Initiative from Tropical Smoothie Cafe and nominate a child with special medical needs and their family for the chance to win a trip to Camp Sunshine in Maine I jumped at the chance!
Camp Sunshine was founded in 1984 and is a retreat for children with life-threatening illnesses and their families. (It’s the only year-round program for entire families of it’s kind!) Keep reading for more information about Camp Sunshine and how you can nominate a family as well!
I couldn’t think of anyone more deserving than my cousin Clare for this opportunity. Clare was born with a genetic deletion called Williams Syndrome, which causes multiple medical issues including congenital heart defects (PPS and SVAS), vascular defects, Mid-Aortic Syndrome, renal hypertension, hypothyroidism, nephrocalcinosis, and Chiari Malformation.
Two years ago Clare underwent a life or death surgery consisting of a complete bypass graft of her lower abdominal aorta, a bypass of her SMA (superior mesenteric artery, the major blood vessel that supplies blood to the digestive system), and a re-transplant of her own kidneys. Throughout it all, Clare has been an inspiration with her fighting spirit and her unyielding smile.
Clare’s mom Teresa has kept our family updated with her blog, since we are spread out across the country. It has been wonderful to feel closer to them through photos, but I’ve always still felt a little helpless to really do something for them. I would imagine that there are many like me who also wonder what they can do to help the family of a child with special medical needs.
I asked Teresa if she would share some things that really made a difference for them during Clare’s hospital stays, as well as when they returned home. She gave some excellent suggestions, many of which I never would have thought of!
How you can help the family of a child with special medical needs:
1 – Check in on them.
Whether it’s a call, e-mail, text, Facebook message – let them know you are thinking of them and their child. Ask how they are doing. Don’t not say anything because you’re afraid of bothering them. It’s not bothersome, it’s not nosy. It shows that you truly care. But also don’t be offended if you don’t get a response or you get a brief one in reply. And don’t stop reaching out to them if you don’t get a response. There were many times where it was one thing after another during Clare’s day in the hospital and, by the end of the day, I was exhausted and just wanted sleep. My friends would continue to check in to see how things were going.
2 – Do something concrete to help.
Many people say “let me know if you need help” or “I am here for you if you need anything.” Those are very nice sentiments, and I do believe people mean them. But, if you’re like me, you rarely ask them for help. The best ways people helped us when Clare was in the hospital was not to just say “let me know” but to make specific offers or just do something. One friend organized a meal train and told me after it was organized. Another one gave me an envelope of cash with gas cards. One of my kids’ teachers told me she would bring the kids home from school, just to let her know which days. It’s a lot “easier” for a parent to accept this help when it’s specific because then I don’t feel like I’m burdening them with having to ask for help. And parents often need a lot of help when their child is in the hospital, especially if they have other children at home. Even if they don’t, lawns need to be mowed, laundry piles up, bathrooms cleaned. A great example that another mom shared was that she was told by a group of friends to put her dirty laundry in a trash bag on the side porch when the bag was full. Someone picked it up and then delivered it back to her washed and folded. It made life so much easier for that mom because the laundry got done, but she didn’t have to coordinate schedules and pick-ups/drop-offs or any awkwardness about having other people do her laundry. She didn’t even know exactly which friend on which given day did the laundry. (Wouldn’t that be nice to have someone do that all the time?!?)
3 – Surprise them!
Some of the best things people did for us were completely unexpected. We had friends show up at the hospital one day with lunch (not from the hospital cafeteria for once!) and a huge bag of healthy snacks and bottled teas and water. It’s not always easy to get a snack or meal when your child is inpatient so having a bag accessible to us was a big time-saver. And healthy stuff. I always feel like I eat so much junk when Clare is inpatient. Friends showed up one night when Clare was in the ICU with wine and plastic cups. We sat in the parent lounge right outside the ICU and actually felt somewhat normal for an hour. (That is probably not totally legit to be doing but it was awesome at the time!) Family and close friends would come and sit with Clare so Shawn and I could escape for a little while from the hospital.
4 – Don’t forget about them once they go home.
Once Clare comes home, things don’t necessarily get easier right away. After her huge surgery, she had about six weeks of recovery. Six weeks of being pretty much stuck at home except for numerous doctor’s appointments and physical therapy. So even once your home from the hospital, life does not immediately go back to normal. Since I could not leave Clare, friends would come pick up the other kids for playdates and outings so they also weren’t stuck at home all the time.
5 –Know that your help DOES matter!
We are blessed by being surrounded with a network of supportive friends on a daily basis. It really does take a village sometimes. I don’t know how we would get through all of Clare’s hospital stays without help.
A big thank you to my cousin Teresa for sharing Clare’s journey and her help with this post! I’ve made a donation in their name to both Camp Sunshine and the Williams Syndrome Association and I urge you to consider these worthwhile organizations for your charitable efforts in 2016! Here’s where you can Donate to Camp Sunshine.