Originally posted by Silvia on her blog: http://blog.silviaskingdom.com/?p=852
- When you know more than the real doctors do about your child.
- When you consider internet friends you’ve never met to be some of your best friends.
- When you think it’s a good day if you don’t see any blood.
- When you get asked at least once a week if you are a nurse.
- When your two-year-old knows how to pop blisters.
- When you pack for a vacation and the first suit case is filled with supplies and equipment.
- When you have a legitimate pharmacy in your kitchen and the pharmacist knows your name and welcomes you as if it was Cheers (Norm!).
- When you constantly get asked “How do you do it?”, and you have no clue either.
- When your neighbors must think you have an online shopping problem from all the boxes of supplies dropped by your door.
- When you have your insurance ID number memorized.
- When the secretary, principal and superintendent of your child’s school know you by name.
- When you find little pieces of Mepitel laying around the house everywhere.
- When you developed some serious muscles lifting the wheelchair in and out of the trunk.
- When you realize you could get a job writing appeals letters to the insurance.
- When your capacity for hope is bigger than anyone else’s, that you know of.
- When you can hear your child calling you across the house, with dad snoring next to you.
- When you make sure your purse has some extra gauze, scissors & syringes.
- When your child’s doctors take orders from you.
- When you consider a good day one that your child does not ask for pain meds.
- When the school nurse for your other (healthy) children know who you are.
- When you have to stop and explain the Medical Terminology you don’t realize you say to people that are unfamiliar with your child’s condition.
- When you have more medical supplies than a third world country.
- When you have lost count of the number of hospital stays, surgeries and procedures that your child has had and you don’t really care to know.
- When every night you sincerely thank Heaven for allowing you to mother this child for one more day. You know the time will come when it will be over, and you don’t want to miss a minute of this wonderful, painful, challenging, inspiring journey. Because you know, better than almost anyone, how life can change in a moment, an instant, and how none of us are guaranteed a tomorrow.
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Epidermolysis Bullosa, EB, is a very difficult condition to live with, even with the mildest forms.
These are things of outmost importance in helping your child coping with EB:
- Accept the EB and accept your child for who he is.
This sounds simple, but it’s not. There is a certain degree of loss and mourning when a child is not born healthy, and it takes parents different amounts of time to learn to accept things how they are. This may take months or years, depending on the circumstances. The amount of time will depend on many factors… such as if this is your first child… or last, your age, and who you are and your upbringing. But, remember, the more accepting you are of your child’s EB, the less of a ‘big deal’ you make of things, the happier and comfortable your child will be.
- Remember, your child is #1, EB is to be treated separately and “secondly”.
This is also easier said than done, especially when the children are small and there is so much care involved. But it’s important for the kids to grow up not thinking EB is all they are, because their little brains are working just fine, and they can do so much! Remember, most EB kids are straight-A students!! Skin care is important, as their health and life depends on it, but it is important for their mental well being, to help them be children, and you need to help them enjoy all the things in life a normal child enjoys, to play, to laugh, and to learn, with all the potential and need for joy as any other child.
- Don’t be afraid to consider your child ‘disabled’.
This is one of those things no Dr will ever tell you, and parents are afraid to consider, but it’s the truth. Go ahead, get a wheelchair (it will save your child’s feet on long walks), get SSI (for financial help if needed), apply for help (Dept. Of Developmental Disabilities), get disabled plates (for extra wide spaces to get in and out of the car), it will make your child’s life much easier.
- Teach your child to explain EB
There will come a time where you might be a breath away and not hear someone ask if your child got burned or has chicken pox. But your child heard and wants to answer. What is he going to say? This will happen often once he/she enters school, so, better be prepared. They can say something as simple as ‘I was born with a skin disorder’, or they can even hand out cards that explain what EB is (my favorite Option). Whatever you decide, make sure to instill in your child the notion that EB is not ‘who’ they are, just something they have.
Coping with Baths/Bandage Changes
Bath and bandage change times are hardly fun times for either the patient nor the caregiver. The kids are scared of the ‘upcoming’ pain and they scream and holler in discontent. My son even hyperventilated-always did. He will do just about anything to get out of it, even take a nap (which he will always resist in taking otherwise).
Bandage change time is probably the only time EB kids get to release their frustrations, using it as an excuse to complain and cry about the whole situation, the powerless feeling of the condition, perhaps how they are treated by society etc. This, however, is not healthy. For kids with RDEB it’s a known fact that hollering and screaming hurts the throat-my son always throws up after a fit.
So, what do we, as parents, do to help the kids cope?
These are some suggestions that came forth from adult EBers.
- Diverting their attention AWAY from the wounds and the pain during the bath and/or bandage changes really work, such as watching a particular video, having someone else play with them or read them a story, or have them fiddle with a particular toy. Making a game out of bandage changes has worked with some kids too.
- IF your child loves a particular food, try to reserve it for bandage changes. My son *loves* M&Ms and Skittles, so I do not give them to him except during those times where he really needs the distraction. It does not always work, but it’s worth a try.
- Try to involve your child in his care as early as possible… the sooner the better. Whether that is letting them take the bandages off, having them hand you a needle or gauze, have them decide what limb to start with, etc. Basically, anything you can do to give them “a say” in what’s going on.
- Teach your child breathing techniques. Breathing helps control pain (and I know this one from having gone through 2 labors, lol), and once your child gets the hang of it, it will become second nature.
- Have your child pick a soft toy, they can beat, bite, punch, pull or whatever they need to do to channel their pain.
- Try saying things like, “I know it hurts.” or “this is going to hurt.” or, “Mommy does not like seeing you in pain but, we need to do this.” Be honest. And tell the child what you are doing as you are doing it. Instead of using the word “I” use the word “We” so, that the child hears he/she is part of what is going on and not just having this stuff done to them. Like, instead of saying “I need to pop this blister.”, say “We need to pop this blister.”. And so forth…
If you have any other helpful hints to share, please leave a comment below. Thank You!
Meet The Parents
In the late ’90s and early 2000s this website had a recurring ‘featured’ parent. While we no longer do that, the featured parent and their stories are still available to view.
God Bless them all.