I know there are some out there who think they know what the life of an EB mom is like. Maybe you’re an EB (Epidermolysis Bullosa) mom yourself, and this is your truth, but to others, this may be a surprise, or even a revelation.
Here’s what my life it’s like from my prospective.
You Know You’re An EB mom When…
- 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.
What I Need You To Know
I don’t need your parenting advice unless I specifically ask you. I’m already reading every book, watching every video, and researching every conference and expert. I have more googling experience than anyone I know. No one wants to know more on how I can help my son more than I do. But I’m maxed out with advice. And although I respect you, I don’t need you to judge me or assume. I need you to support me and believe in me. I’m doing the best I can.
“Support services” seem like fairy tales. Yes, the county and state offer assistance. But navigating the system is like trying to find a needle in a haystack. I’ve spent hours on the phone and online with nothing to show for it for months and years when my son was younger. If it’s available to me, trust me, I got it.
Each day is an effort. We live one day at a time. I’d love nothing more than to hang out, share cups of coffee or have a drink. I need it. But I have zero margin. Forgive me. Don’t give up on me. I do the best I can. When I have a free day, or just a free morning, you’ll be the first to know.
I don’t always know how to ask for help. It’s tough to know what I need. I enjoy taking care of my son and my family. I adore all of them and would die for any of them. I would love a weekend away with my husband to feel like a wife and a woman, but an EB trained nurse to provide child care is inexistent. I made peace with that. My biggest need is to help doing things I can’t do around the house. It is all.
I worry about dying. I worry about my kids getting sick and dying (yes, even my healthy one), I worry about my husband dying (he had 2 strokes a few years ago) and leaving me alone. I watch people I know grieve the loss of their children and try not to think about it. On the up side, I live life fully and don’t take anything for granted.
Yes, I have lost it on occasion. True, it’s not the the poor lady answering the phone at the insurance company’s fault, if my son’s surgery was refused or that needed supply item not covered, but after dozens of phone calls and no call-backs, I do finally erupt like Mt. Etna. It has happened and I make no apologies.
No two children are exactly alike even in identical twins, so what works for one, does not always work for the other. Before you tell me what I should and should not do, I would appreciate you thinking that I might have done already some research on the subject. It might shock you to find out we most likely already tried whatever you’re suggesting. I can assure you I have logged more internet hours reading about my child’s diagnosis than you have read a sum total of everything you have ever web searched for in the first place. If you could please limit your comments to “I heard of a family using XYZ, I am sure you know more than I ever will, what’s your take on it?” I’ll be very happy to discuss it with you. Honestly!
Finally, If you are an older EB patient and feel the need to assume that just because your mom/dad held you back and told you you could not do things because of your condition and say things like this behind my back: “she thinks she knows best” or think I am the same way as your parent so I should be your punching bag… stop right there. You need help. You need to seek counseling, therapy, perhaps medication or a good sit down talk with your parents. Don’t take it out on me as you have done for the past 15 years. I heard you years and years ago and I have never held my son back and if it wasn’t for me he wouldn’t have done half the things he’s done or gone to half the places he’s gone. Stop assuming all EB parents are the same. We are not. Just like all EB patients are different, so are the parents. All I ask is a little respect. I’ve taken care of Nicky’s every need since he was born 17 years ago. Please allow me the benefit of the doubt that I know what I am doing. THANK YOU.