The other night it took me over one hour just to put Nicky to sleep. Not that it was a stretch, as it usually takes me at least half an hour to 45 minutes. There was the oral care, the g-tube preparation, the bed preparation (bed needs to be cleaned daily) the undressing, the changing of the gauze around his underwear area, the splint for his hand, the medications, the ‘getting the room ready’, which include the various fans, TV, water, tissue, throw-up towels and finally the kiss goodnight, my favorite by far. What took longer that night was the changing of the gauze per se, it was particularly time consuming.
I am not complaining, mind you, just describing a day in our life. Nicky’s daily care starts when he wakes up in the morning, I usually give him his medications, unhook him from the g-tube machine, dress him, help him out of bed, and wheel him to his computer, at which point I get him ice water and make sure he has tissue and a throw-up towel nearby. He has an urinal that I have to clean at least once a day, and during the day he will need refills of water, pain meds etc.
He does not always need a ‘throw-up towel’, this is just a recent thing due to the pre and post throat dilatation. Before surgery he could not swallow his own saliva, now post he has a lot of loose skin in his throat that needs to come out. Not a pretty sight, I tell you, especially when he insists I look at it. I mean, gross. Ugh.
During the day he needs help on and off. To go to the bathroom, for water, popsicles, anything really. He spends his day playing Minecraft, or the WiiU, watching videos on YouTube, there is really nothing else he can do.
At around 7:30pm we start with our bandage change routine, which it has changed over the years. We used to do a whole bandage change every third day, but it was too taxing, too much. I was reminded of how overwhelming a complete bandage change truly is just recently when I took my son to camp. Because they have so many activities and I wanted him to miss as little as possible, we picked two mornings during the week where they didn’t have much going on and we scheduled a bed in the ‘med shed’ for 8am. On the second morning we were there 5 hours non-stop. It took so long that my roommate did not believe me when I told her we did the bandages ‘the whole time’ and asked me where I went. I was so exhausted all I could do is grab a milkshake on my way back with my friend May and we went in to put our feet in the hot tub. I still wanted to make this day ‘fun’, hence I went with the girls to various downtown shops, but the rest of the day I was basically a zombie. I sat outside one of the stores while the girls were inside and I almost blanked out.
So… if I was this exhausted and drained, what about Nicky? He was OK. He’s far stronger than me without a single doubt.
At any rate, usually the routine is, he comes over to the living room couch at about 7:30pm and I give him some pain meds. We sit on the couch, which has three big bins of various gauze stuff under the coffee table and we do one third of the body while watching TV. We have certain shows we like to watch together, such as American Idol, Hot in Cleveland, Two Broke Girls, America’s got Talent and we like Kim Russo, a medium that does this show called ‘The Hunting of…’, a spinoff of one of our favorite shows, called ‘Celebrity Ghost Stories’. It’s just fascinating. Yes, we do believe in the paranormal and supernatural, mostly because we have our own ‘encounters’ with it. If you’re interested, you can read one of my encounters here–> http://blog.silviaskingdom.com/?p=172
But, I digress. We divided his body into ‘thirds’ and we do 1/3 per night. One night we do legs, one night an arm, and the following night another arm. The arms take a long time mostly because of the work involved in wrapping the hands. To me his hands are extremely important to wrap, I know that is not the case for many other RDEB patients and that’s fine, you know, it’s the proverbial ‘whatever floats your boat’, but Nicky loves and cherishes his hands, and wrapping them is as important to wrap for us as any other part of his body. We cover the hand with vaseline gauze, including the fingers, to keep them soft and supple, since the dried up scar tissue is what is responsible for the webbing, and then I wrap them following the instructions given to me by both Nana Sheri (http://blog.ebinfoworld.com/?p=258) & my friend Lorraine (http://blog.ebinfoworld.com/?p=269).
This whole thing takes about 2 hours, it all depends on how eager or picky Nicky is that night. He likes to clean his own wounds, pop his own blisters etc, and he takes a long time doing that. We do this at night because we are both “spent” afterwards and all we want to do is sleep, ha ha, and we do this every single night, so there is never a bandage-free night, no matter what. No matter what we did that day, if we went somewhere, like school, or if we’re at a hotel, none of that matters, we have to do it every single night.
Twice a week I take him to school. I wheel him to the bathroom for his oral care, while I get the car ready. I usually get his water and school stuff in his car, turn the car on and drive it outside to get the passenger’s door closer to the front door as much as possible, turn the A/C on blast and then I go get Nicky. Nicky can’t really walk, so I use his walker with seat and roll him out to the car. When we get to school I put together his power chair which is always in the trunk and make sure he has his fan, tissue box and water for the roughly two hours he’s there to take tests or do homework. Since it would be a nuisance to go home to just be home an hour and have to drive back, I just stay nearby and run errands.
At least once a month I have to take him to get labs locally, which is always a horrible experience, and then also to CHLA for a blood/iron infusion, in which case the whole day is basically gone. We leave around 9am or so, takes us about 2 hours to get there and then do the infusion and drive back. Usually because of traffic or waiting around etc, we don’t make it home before 5pm and then I have to take Connor to Karate at 6pm. Of course during the school year I am also Connor’s Taxi, taking him to school in the AM and picking him up in the afternoon. He normally has swimming too on Saturday morning. My aunt made me laugh the other day when she asked me ‘who’ took Connor to Karate and Swimming. ‘What do you mean who?’ I told her… me! “Oh” she said. I don’t know what she’s thinking. Did she really think I had nannies or something? Ha ha. She’s funny. I love her to death. Nop, It’s just me. I am Mom’s Taxi service!
I never had a nanny, which most people don’t have, but what most EB families have that I never had is a nurse. When Nicky was a baby I was so overwhelmed with his care I used to call to BEG the pediatrician to get a Nurse to help me. Heck, when Nicky was a baby, back in the olden days of 1996, I could not even find any other parent online to help me finding ways to care for him at all. It was all trial and error with us from the very start. The internet was not then what it is today. Insurance refused a Nurse over and over year after year, claiming ‘I knew how to do it’. Yes, that was their excuse. Wow. When I moved to California I did finally get approved for a program called IHSS in 2002 when Nicky was 6 years old, which is a program originally designed for the elderly to hire someone to care for them, usually a relative, which saved the state a lot of money preventing the elderly from being put in nursing homes where the state would have to foot the bill. Keeping them in their homes was not only the more humanitarian thing to do, but it saved the state money. They eventually broadened it to the disabled for the same reason. It’s much cheaper to have someone care for someone in their house, rather than pay some “nursing home” to do it. So, I basically get paid minimum wage for a certain amount of hours a month to care of Nicky. The lady comes by every year to assess Nicky’s needs and see how many hours a day it takes me to do this and that that is above and beyond what any mother would have to do. Many have told me that with this money I should just hire a nurse and go to work. Nice sentiment… just dump my son off to a stranger, not that a trained nurse would work for minimum wage anyway!!! And this nurse that works for minimum wage would have to come in at different times of the day since caring for Nicky is not exactly a 9-5 job, but an hour in the morning, at least 4-5 hours at night and then would be responsible to take him to school, hospital etc. Who is this person going to be exactly? As if this is not a sacrifice of love that I am doing, because I do love my son more than life itself. As if I am selfish or lazy or even a ‘moocher’. As if living without a hefty paycheck for myself to afford nice vacations, new furniture, bigger house, lavish wardrobe, perhaps a maid, is something I don’t wish I could do. Why does our society frown on social services I will never understand. I grew up in Italy, and people there don’t think like that, so I don’t either. I can’t. It’s not part of the fabric of which I am made. I never learned to look down on the poor, the disabled, the disadvantaged, the elderly, and I never will. I don’t judge people I don’t know because I don’t know their story. I don’t know their sacrifices, I don’t know their struggles, I know nothing. I don’t judge, period. It’s not who I am.
The truth is, my children need me. They need me NOW, not at some point in the future when they are adults.While Connor will most likely be self-sufficient soon, Nicky most likely never will be. As he’s getting older, he’s getting harder. He’s bigger, and he can do less and less. It’s the nature of the condition. RDEB (Recessive Dystrophic Epidermolysis Bullosa), unlike some other forms of EB, is a degenerative condition. According to the Merriam Webster dictionary, ‘Degenerative’ means “causing the body or part of the body to become weaker or less able to function as time passes”. It’s hard for me to describe or what it means to watch your own flesh and blood deteriorate in front of your eyes.
We need a cure, sooner rather than later, since time is not exactly his friend. Am I lucky to be able to be home? Of course. I never take it for granted. I know there are people in worse situations than mine, I watch the news. I know about my great-aunt losing her entire family and what it did to her, I know about families that lost children to EB, in some cases more than one. That’s why I want awareness, that’s why I started the ebinfoworld.com website, and everything else. Hell on Earth is what this is, make no mistake.
As per my finances, following not one but two bankruptcies, I make whatever money go far by clipping coupons and shop at thrift stores. I call myself ‘cheap’, but my husband gets mad when I say that, he said I am ‘frugal’ and there is nothing wrong with that. I also realize not every mom can stay home, but all those that do usually have family nearby, which I don’t. And single moms with disabled children? YOU ROCK. I was a single mom for a while there and it was horrid. Even if the children are healthy, it’s an enormous job, one we can never understand unless we’ve been there. To be the sole caregiver for another human being with no help from anyone… I almost went crazy. People go through all kinds of hell, respect is all we ever ask for.
I see photos of children spending a week or longer with their grandparents or other family members and please know that, yes, I am jealous. I try not to be, but alas, I am human. I am jealous of my own sisters (which I absolutely adore), cousins and friends that can just ‘drop off’ their kids with relatives. I can’t drop Nicky off anywhere and I am the one that could use a break the most. My son can really only go to his dad’s for the weekend, and he does go every other weekend for a total of 4 days a month, and even though a couple of years ago I was able to go to see my family in Italy for 3 weeks, that was a huge, gigantic stretch, one I will not do again anytime soon. Not because his dad didn’t do a really great job (I have nothing but respect for his dad, we may no longer be married, but he’s an awesome dad), but because I promised Nicky I wouldn’t. He and I are as close as any two human beings can be. He’s part of me, like a leg or an arm. If he’s not with me I feel as if I am lost in some way. I am planning to go to Italy again sometime in the next couple of years, but the kids are coming with me. Que in the Twilight Zone music on how in the world I am going to pack all the bandages and liquid food without going over in the weight limit! Ugh.
Do I wish I could do other things with my time? Of course. I would love to have a fulfilling career, have the freedom to travel anywhere at anytime… heck, just being able to leave the house which at times I feel is my prison. I sometimes crave time ‘alone’, to think, read, figure things out, sleep. But caring for Nicky is important to me and I do feel my work is important. I honestly feel this society as a whole thinks taking care of children is an unvalued skill. I disagree. Taking care of the next generation is ‘the’ most important skill. Just my opinion, of course. Sometime I wish people would take into consideration a lot of things when it comes to Nicky, EB and his care. I remember when his middle school teacher used to constantly complain about his ‘smell’. I find it quite insulting when anyone’s only reaction to Nicky is his ‘smell’. He is a child in pain, and all you notice is the smell? He truly does not smell that bad, and, frankly, if you want to talk about ‘smell’, you should be the one touching and handling the bandages filled with oozing wound stuff. The smell is the least of my concerns. It’s the state of his wounds that worries me the most.
OK, so, I went off on tangents here and there, but that’s pretty much what our days are like. Sometimes I feel we live in the movie “Groundhog Day”, every day is just the same, so that is why I look forward to little vacations I save for, fundraisers we can attend to, camp, getting together with my friends, getting a massage or facial every now and again. I try to treat myself and carve a little time to read a couple of days a week too. I tell my kids I am going to take a bath for one hour and to not disturb and I read while I soak. It’s my ‘me’ time. I wish I could do it everyday.
Thank you for the kind and supportive words, they lift my spirits more than I can express. Writing has always been my therapy, and the reason for this blog. I am still working on my book of Nicky’s life. It’s been harder and harder to remember some of the things, but I know what a weight off my shoulders it’s going to be once it’s done.
Hugs and Blessings… Love and Light <3
