~MaureenThe summer heat will be creeping into Florida over the next few months – or just showing up on the doorstep in April saying
“I’m here, ready or not!”
For many, summer means BBQ’s and fun outdoor days; lazy rivers and flower gardens. For our 17-year old daughter, Winter Marie, summer heat has typically meant pain, itch, rash, multiplied medications, increased infection risk as well as an amplified potential for life-threatening reactions.
Since Winter turned one, she has had severe eczema and immune challenges. Rounds and rounds of medication, food and chemical testing, alternative meds and contemporary medicine have brought her to a baseline that we call “normal.”
When the temperature rises, inflammation which continually burns under her top layers of skin – unseen to the outsider, but felt by her – rises to the surface.
The pain and itch intensify, the need to scratch begs in earnest.
Mediation by medication isn’t enough. And the itchy pain becomes a scratched arm, face, legs. The scratches rise. The wound weeps. Infection waits its opportunity.
The past two summers Winter and her mother have spent the hottest three months staying at a Ronald McDonald House in Colorado, under doctors’ recommendation. Living life housebound for nearly half the years of her life is no longer a healthy option, when there are others.
This summer, Winter’s team of doctors, from Duke University Medical Center (Durham, NC), National Jewish Health (Denver, CO) and locally in (Jacksonville, FL) recommend, due to new-to-her treatments we are testing, that we find a summer location on the beach so she can try being outside in the heat, along with the health benefits of sun and salt water.
In conjunction with her new medical routines, they are hoping this environment will give her a good testing ground before subjecting her to inland summer heat and humidity.
Some things we must consider, for medical purposes:
- fire station/ambulance available in 20 min or less
- within 20 minutes ambulance drive to hospital
- on the beach or walking distance to the beach (Mom’s health prevents her from driving)
- pet-free room
- room with a tub
- air-conditioning
- grocery store (and a pharmacy) w/i walking distance, or transportation available (public or otherwise)
- access to cooking facilities (simple is fine)
- internet access (WiFi preferred) for family/church/friend support
WE NEED YOUR HELP!
Do you know of a place we can stay? Or have friends, family, business associates who might be able to help? Here are some possible locations:
North Carolina
Bodie Island
Hatteras Island
Roanoke Island
South Carolina
Myrtle Beach
Hilton Head
Kiawah Island
Surfside Beach
Pawleys Island
Georgia
Jekyl Island
St Simons Island
Tybee Island
Florida
Jacksonville Beach
Amelia Island
St Augustine
Ponte Vedra
Neptune Beach
Fernandina Beach
If you have leads we can follow, please email Suzanne, the mama, suzmom at msn dot com or contact Suzanne on Facebook or her blog.
How about Lewes, DE. There I in hospital in Lewes, definitely grocery stores, and public transportation. We live about 45 minutes inland from the beach, but I'm wondering if there are any churches that could help?
Oh my. I'm not sure. But if I had my way we'd live in Florence, Ky. Its beautiful there and everything is within walking or driving distance. We stayed at the Paddock Inn one time when we traveled to Cincinnati ( its in Florence, Ky). I fell in love with it as soon as we got there. Is about a 20 minute drive to Children's in Cincinnati, I"m not sure where the fire department was because we didn't go to far out of our comfort zone. But there were about three pharmacies within walking distance where we were staying. Cincinnati is an awesome hospital and they do have a great Immunology, Allergy, Eosinophilic disorder clinic. Bar to none. I know MANY families with children with severe allergies that go to Cincinnati, Ohio. Granted there isn't a beach. But if you try to hard to look for that perfect place , your just not going to find it and will get disappointed.
Have you considered registering with
http://www.christian-housesitters.com
or
http://www.housesittersamerica.com
You can help someone else while they also help you!! Will be praying the Lord leads you to the right situation!!
Have you checked Indian River Plantation area on Hutchinson Island, FL? It is beautiful there!
I know exactly what you are going through. We are heading to NJH this spring. I don't know how we are going to pay for it. The beach has always been good for my daughter. I wish I could help you find a place but I will certainly pray for you.
Oh my!! We live in inland NJ, but I will be praying for you and your daughter during this medical transition.
Thank you so much for ideas! What a process, what a good God!
Hadn't heard of them … Will check into it! Thank you so much!
Oh Hutchinson Island is GORGEOUS! We stayed there with my sister one year. Wow, wouldn't that be amazing?!
Oh Nancy, how it breaks my heart to hear of others going through the same pain … both the child-patient and the mama-heart. NJH was very very helpful. Not a cure, but a management system and hopefully enough to keep her closer to home this summer.
Check with NJH's financial office – they have several options. Also check with your state/county Children's Medical Services dept. Sometimes they can help, too. <3
Thank you for your prayers, Aurie. I am overwhelmed at the goodness of God in the land of the living. <3
Pretty strict criteria from the doctors about the salt air. It isn't Suzanne being picky as much as she is just laying out what she has done and has been told to do next. And because she can't drive that is a limitation and because they don't have money to just rent a place close to the beach for the summer that is another limitation, but GOD is bigger than our limitations! So please join us in prayer that He will put Winter right where she belongs next summer, thank you! Maggie
Thank you, Maggie. I know from “outside eyes” this must seem like we are spoiled brats looking for a vacation. When one watches her child suffer, it turns our world (and pride) on it’s head and makes a mama want to do whatever it will take to ease the pain. I trust God, whether we stay or whether we go, to keep her. I’m just doing my best to follow the doctors’ recommendations. It’s a hard road when it’s not the Common Road, but when God walks the road with us, it’s the Best Road to be on. Thank you for your prayers and word of support!