There Is Always A Bright Side

Posted on May 4, 2013 by Silvia

When working at Target several years ago as a cashier, a couple came in to buy a large pack of diapers and as they were checking out they told me, in a sarcastic and bothered kind of way, how they could not believe they were still buying diapers for their 7 year old daughter. I asked about their daughter and they told me she had some issues with some sort of disability, and I told them not to feel too bad because I was still buying diapers for my 11 year old son and that I would be buying them forever. “Oh”, they said, all of a sudden being grateful that their daughter’s issues were just temporary.

91I’ve said it before and I will say it again, there is always, always, always, someone in worse situations than you.  This does not mean you can’t complain or be bothered or vent sometimes, but if there is one piece of advice I could give you is to make sure you pay attention to who you are complaining to. Would you complain about your shoes to a man with no feet? Would you complain about your labor and delivery to a woman who suffers from infertility? Would you complain about your mom to someone who just had to bury theirs?

My aunt, bless her heart, took care of my grandma until the day she died when she was almost 102 years old. Every morning my dad would drive up to their place to help her get their day started, she also had the upstairs neighbors who would come over daily to help her with whatever she needed, she also had her best friend come over every day to help with dinner, chores, or whatever she needed that day. On Sundays, however, busy with church and/or other family related engagements, my dad, the neighbors and friend were busy taking care, helping or spend time with the many other family members, sons and daughters, grandchildren and the like. My grandma passed away 8 years ago and just last summer when I was visiting my family in Italy, my aunt was crying over the fact that nobody ever helped her on Sunday. As I was listening to her, I could not help but wondering if she knew who she was complaining to, about something that had been over for 7 years nonetheless. So, as gently as I could say it, I asked her “Do you know what day of the week I have nobody helping me?”. She looked at me with an inquisitive look and was not sure where I was going with this. “No” was her answer. To that I replied: “Monday, Tuesday, Wednesday, Thursday, Friday, Saturday & Sunday”.

548272_563493867014571_1038442935_nWhat saddens me and hurts me more than anything is the fact that she had no idea how bad Nicky is, that I have to do it all without any help, she never asked me how I handled it all, and she didn’t know because, unlike her, I did not complain to her about it. At least before my husband had his strokes he could help me with many things and take care of stuff, but now for the past 4 years not only I have to take care of Nicky, which has gotten harder, but I have to do many things to help my husband and let’s not forget Connor is still only 9 years old. Nicky’s dad takes care of him every other weekend, and he does change his bandages, but beside that I do it all and I try not to complain about it because I don’t want to feed the negativity and hopelessness of my situation. Sure, I have my moments, my instants of deep despair, but I know how important and what a forceful influence in our lives the word Hope and Happiness are, how important it is to find the silver lining, the bright side, being positive can give us a reason to go on and more forward. I don’t want to feed into depression and fall into the abyss, I wake up every day finding, searching for a reason to be happy, a reason to sing.

My grandmother’s whistles come to mind… she used to whistle excessively  When I asked her once why she whistled so much she told me “It makes me happy”. Cheers to you Nonna! I miss you!

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If I Knew Then What I Know Now…

Posted on April 30, 2013 by Silvia

I was changing Nicky’s gauze last night, once again being amazed of how much certain types of gauze helps or protects Nicky’s skin and I wished the myself of today could not only advise the me of 16 years ago, but actually hand over the supplies to do it. If I could, Nicky would for certain be better off today. No doubt about it.

I can’t even begin to describe the horrible shape I was in when Nicky was born. I am writing about it in my book and I shake my head in disbelief. The various Insurance companies refused to cover bandages for over a decade. The bandages themselves were… sad. All we had to work with was Vaseline Gauze and rolled gauze. Wounds would get ‘stuck’ all the time. I washed and reused rolled gauze and survived with gauze donated to me by either other parents or from patients who had passed. We hated Telfa, it macerated the wounds, everyone sent us those for some reason. There was no kind of gauze like Mepilex that absorbed the wound’s yuckiness and kept the wound clean. I used coban to keep stuff in place, my choices were so limited, I cringe thinking about it.

IMG_0023 (4)f_sHere’s my little sweetie when he was 2.5 years old. I got him as undressed as I possibly could so we could go play in the pool. Just the fact that I wasn’t wrapping his hands on a regular basis because I simply did not have the gauze to do it, or that I loosely wrapped around his knee and not the other because, once again, I did not have enough gauze, just makes me realize how much damage I could have avoided. But I had no choice. No choice. Wound care supplies were so exorbitantly expensive I already had had a bankruptcy because of them and now, with no credit and living with donated supplies, I was always afraid of running out. It’s not a good feeling.

I can only speak for Nicky, because that’s all I know, but once areas get damaged ONCE and they heal without moisture or not good somehow, they become scarred and scar tissue is weak skin which will re-blister that much easier. Eventually, as each new wound goes through the cycle of healing, it takes longer and longer to heal and then it does not heal at all. That’s why Nicky today has wounds that take FOREVER to heal, and some never do.
Oh… what I would do to get that Delorean and visit my older self a few times a year to give myself supplies and tips. Sigh.

Of course, it’s fruitless to make these kinds of wishes. I can only say that I am proud of myself to have been able to take care of Nicky as well as I possibly could with the little knowledge and few resources I had.

IMG_9440f_sBefore I close this post (I promise my next post will be ‘happier’!) I wanted to share this image of Nicky’s left foot I took just the other day.  The ‘white’ raised spot you see is actually a blood blister that appeared below some really heavy scar tissue. It was difficult to poke and even harder to make sure all the fluid was gone because of the thickness of the skin above.  Not poking a blister with EB causes it to make a bigger and bigger wound. Those unfamiliar with EB may be a little taken aback with the appearance of his toes. When Nicky was little I used to put 1″ gauze in between his toes to prevent them from webbing. It wasn’t until Nicky was 6 or 7 and told me to stop doing that, and that he didn’t care about his toes webbing that I stopped. He’s the boss. Since then there has been quite a bit of webbing going on, the big toe and the toe next to it are fused and the other toes are basically webbed to the bottom of the foot. Nicky laughs and tells me he could not care less.

I must say, Nicky amazes me every day. His attitude about all of this blows my mind. Yes, he LOVES his pain meds, yes, he *HATES* EB (as controversial as it is to say this nowadays), yes, there are times he wants it all gone so he could live a normal life, at the same time for the most part he takes it all in stride. He’s a very loving, caring teenager that tells me he loves me a dozen times a day, who hasn’t cursed in I don’t know how long, who is more sweet than sugar, who is content very easily, and takes life one day at a time.

I Heart Nicky!

Love,

springdolly_silvia

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Wound Pics

Posted on April 28, 2013 by Silvia

I just noticed that I haven’t posted any ‘wound pics’ of Nicky in a while, so I picked about 4 that I took in the past 2 months.

For those that are unfamiliar with my son’s struggles, he was diagnosed at birth with EB-short for Epidermolysis Bullosa. When he was a mere month old he was further diagnosed via skin biopsy with a rather severe form of this condition called ‘Recessive Dystrophic’ (RDEB), one of the rarest, more severe and more lethal forms.
How rare? How severe? How lethal?
According to the latest statistics, about 3 babies in a million are born with RDEB. Both parents have to be ‘carriers’ (and do not have the condition) and as far as I know there is not ‘test’ to find out if you’re a carrier unless you already have a child with EB.
RDEB is considered severe and eventually lethal mostly because 100% of the patient end up dying sooner or later from complications that range from infections to skin cancer, failure of internal organs and more. Life span is difficult to assess, I’ve met children who, in my view, were a lot more severe than Nicky, yet lived well into their 20s, and others who to me looked great in comparison to Nicky, who did not even reach their 10th birthday. It’s all a crapshoot. It all comes down with keeping on top of infections and cancer, but many times these infections/cancer can sneak up on you with no way to prevent them. Do I hate EB? Let me count the ways.

In the past I would just put photos of my son’s wounds on Facebook, but now I refuse to since all they do is delete them because people are ‘bothered’ by them. Boo hoo. Cry me a river. This is our life, our reality, our struggle with EB. I realize it’s so easy to ignore, look away, most of our relatives haven’t seen Nicky in over a decade. I get such warm and fuzzy feeling about that! No, I don’t. But I do know this has nothing to do with Nicky but more with the uncaring attitude of people in general. No, you can’t ‘catch EB’, come and see him, hug him, love him, and you will see what you’re missing. There is no bigger and more amazing Angel than my treasure. Sad relatives are scared to see him. Their loss.

What makes this all worthwhile is the countless strangers that have come forward and shown us that there are indeed people that CARE and pray for Nicky every day. It means more to me than… I can possibly express. To these kind strangers, who have come forward from every part of the Globe, from India to Norway, from South Africa to Ireland, I THANK YOU <3 <3 <3

web4This above is a photo I took after I took off the finger bandaging. His index finger was bleeding profusely and it took a while for us to get it to stop. I have to bandage each finger to keep the fingers from webbing and contracting.

web3His left arm has been a source of concern for MANY years now. There was a point a few years ago that it was completely-and I do mean COMPLETELY- raw, there was no difference between his arm and looking at a package of shredded hamburger meat. It’s been a few years but now we’ve been able to heal it a bit. What concerns me the most is the threat of skin cancer and how he cannot straighten his wrist. Sigh.

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I honestly cannot remember his knees being completely healed since he was 5. This is his right knee and it actually looks pretty good here, it looks much worse now, as the wound has spread up quite a bit.

web1Just after we took off the Polymem from his arm, which is responsible for healing most of his left arm, he usually starts bleeding a bit.

It might be a few months before I get the courage to post more wound pics. There are periods of time where I don’t take any photos at all, it’s hard enough to look at them for a minute before I rebandage it, without them being impressed in my memory forever. But… I know how important it is to document his life with EB, so I will swallow a shot of tequila and take more pics next time.

Thank you for caring enough to look and read.

Blessings!
moongirl_silvia

 

 

 

 

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All We Need Is Love

Posted on April 10, 2013 by Silvia

Just the other day I ran across an article on Redbook magazine asking “Would your friends be there for you in a Health Crisis” that made me stop cold. As I read it, I was nodding. Oh yes, I’ve been there.

You see, as I explained, or at least tried to explain in my book ‘Losing Alex‘, I was completely unprepared for the heartfelt amount of support-and the enormous lack of it after the unimaginable happened and I had to bury my first born. Then, when my son Nicky was born with a horrid disorder and the Doctors gave him a year to live, it seems as if everyone disappeared. Everyone. Well, maybe not everyone, but it sure felt like it.
My immediate family (my parents and my sisters and their families) have always, always been there for me, but they live on the other side of the globe, so inviting them for coffee or tea to have a chat or have them come help me when I was losing my mind was out of the question.
There was really no other family nearby, nobody came or called which I translated to ‘nobody cares’, and when a “relative” told me I was blowing things out of proportion when she had never seen Nicky’s wounds or heard his cries of pain, I thought I might drive a few hours to her house and punch her. BTW, this ‘relative’, which is a pretty close relative to Nicky relationship-wise, hasn’t seen, asked, emailed, sent a card or nothing to Nicky in 7 years. As a matter of fact, most of our U.S. based “combined” relatives haven’t seen Nicky in years, some as many as a dozen years, and they do not live on the other side of the globe, they do not even live on the other side of the country! With such caring relatives, who needs enemies?

By the time Nicky was 10 months old I was a horrid mess. I went to a therapist to help me out and my heart sunk when I saw that she was pregnant. Are you serious? Let’s see… my first baby died at birth, I lost the second to miscarriage, and my third might live a year and I have to tell all my sob stories to a pregnant therapist??? I sat there crying for an hour to a 7-months-along pregnant woman, who told me all my feelings were ‘perfectly normal’ and gave me a prescription for anti-depressants. Gee, thanks!

all-we-need-is-loveOver the years I’ve learned to toughen up and sometimes I went too far the other way. It was a balancing act, one I am still working on. Was I bitchy, oversensitive, callous? Oh yes, and I didn’t like it. Just last week I was telling my dad how this is why some people with disabilities and their parents become mean: the loneliness, the judgement, the stares, the stupid questions, the nasty comments, the lack of help, it all adds up. These families are in SUCH A DIRE NEED of love, I can’t even begin to describe. We need love, love, love, love and MORE love.
I can’t stress that enough.

Do I understand that people do not want to talk, visit or engage in a conversation with us because they don’t know what to say? I do understand it, but there is Google now, Google ’what to say to a special needs mom’ or ‘what to say to a bereaved mom’ and you will be inundated with amazing, perfect sentences you can add to your repertoire and make you look as the most amazing, empathetic person on the planet. Try it, seriously. You no longer need to abandon your friends and families when they need you, just Google what to say. You will be their hero forever.

A couple of months ago, trying as I might to raise awareness for EB (as I have since Nicky was born), I posted a photo of Nicky, now 16, asking for a ‘One Million Likes’ for EB Awareness on my EB Info World Facebook Page. Well, we’re almost there now and some amazing things are happening. EB is getting a much needed buzz and I could not be happier. Tons of volunteers are coming out of the woodwork, people who never knew what EB was are now donating to the various charities, some have put it upon themselves and get involved, some are doing fundraisers, people with connections want to make a big impact. I got a small hint at the various things on the pipeline and it’s all amazing. Well, maybe not all. I try to keep my composure, my wits and humor about me, but sometimes it’s just too much. Life get to be too much. People are too much. Strangers can be absolutely wonderful, even better than family, but a very few (and there are only very few, I must always remember that, an extremely small percentage) are the most disgusting people ever. Some of the comments I received on my son’s picture have been so toxic I promptly deleted them. They range from the ‘this is fake’ to ‘likes do nothing’, some threw in cuss words for good measure, and at least a dozen people sent me that ‘canned’ Facebook message ‘This picture bothers me, please delete it‘. A child that suffers bothers you? Really? What kind of MONSTER are you?

But, I digress. This blog is not about people being mean, there will always be a small percentage of people who are ignorant, clueless & hateful. There might not be enough love in their life perhaps? This blog is about Love. What the world need is Love. The Beatles sang about it, countless movies sang its praises, remember how you catch more bees with honey? It’s true. Count your blessings every day. I do.

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Clearly!

Posted on April 1, 2013 by Silvia

The more I live, the more I realize I am not living a normal life. Far from it.

Clearly I have no idea what “normal” even is anymore. What is normal? Is anyone’s life “normal” anyway? It does seem as if many are living an “ideal life”, so to me, that spells normal, everyone around them or in their family is healthy and happy, they have good jobs and perhaps they should be happy but many, unfortunately, aren’t. These unfortunate souls apparently have no idea how lucky they are because all they do is complain about the most trivial things ever, and when they don’t complain about trivial stuff, they become almost mean, demonizing the poor, the weak, the handicapped. Do they even know how kids grow up in the slums? Do they know their stories? Do they know of all the children and adults that are abandoned by society because they are ill or handicapped, or are they just so bored with their ‘happy’ lives that they have to invent things to complain about? Sometimes I think these types of individuals are in dire need of a reality check, how about going to talk to someone in a homeless shelter? Volunteer at a soup kitchen? Visit a Children’s Hospital?

Maybe I am jealous. I wish I had all this time to complain about other people’s unlucky situations and pass judgement on them. I don’t have that luxury. I live each day on the edge, almost waiting for the other shoe to fall. It’s not a happy feeling, far from it.

This past week I had to take my son Nicky to have his hydrotherapy which is supposed to take place twice a year, but by the time the insurance approves it it’s more like once every 9 months or so. This is basically a good bath/bandage change which gives the Doctors an opportunity to look at his wounds, checking for infections and cancer. Yes, cancer.
Up until Nicky was about 12 or so, I used to do this at home every 3rd day, but it became so painful for Nicky I had to stop and revise the way we changed bandages. This ordeal needed to be less intense, and that’s why we decided to do partial bandage changes every day, one arm one day, the other one the next and then legs the third day. Of course this was before I put my foot down and requested… no, DEMANDED stronger pain meds. After all, it’s not like I give Nicky pain meds 24/7, I only give them to him during bandage changes, and I still only give him something mild, like ibuprofin if we know the area we are changing is doing good. Sometimes though he needs something super strong and that’s how I was finally able to get the Dr to give Nicky a prescription for morphine. It wasn’t easy. I felt like I won a MAJOR war when we got a prescription for that. Good Lord!

Nicky's HydroTherapy, photo courtesy of Jodi Champagne

Nicky’s HydroTherapy, photo courtesy of Jodi Champagne

Nicky has been doing these hydrotherapies now for several years and our great friend Jodi, who is doing a photographic documentary of Nicky’s life with EB, decided to come up and document this for us this time for the book ‘Courage Under Wraps’ due out in September. When she posted this photo on the right, I was overwhelmed with words of support and prayers, but I was also a bit taken aback by some comments. While these comments were rare, I was still upset by them. Clearly, I should not have read any of them. The comments that got to me were those of people saying things like: “Why aren’t they giving him pain medication?” (why are they assuming we didn’t?) or “You need to give this child Morphine!” (again, why are you assuming we didn’t?) or the best one “OMG, Morphine, that is awful!” (we can’t win, can we?). The one that I got a few times actually that needed a lengthy explanation from me and from Jodi was why we weren’t sedating him. Oh Dear… Sedation.

OK, I will start this by saying that sedation was never offered to us, but we never considered it an option anyway. Maybe this works in other hospitals for EB patients, but Nicky would have turned it down cold if it had been offered anyway. It’s always interesting how what works for one patient is crazy talk to another. I wrote a whole blog on ebinfoworld.com about this issue alone. Remember, every EB patient is different!
I wrote that blog, BTW, as basically a retaliation to those that kept telling me I was doing things ‘wrong’ (such as “overbandaging” him and other nonsense) and how dare I do this and that to Nicky (surgery to his left hand was the latest) when Nicky himself makes the decisions and how dare they give advice without even knowing Nicky at all, don’t they know every EB patient is different?
At any rate, Nicky would not dream of doing hydrotherapy under anesthesia. For one, I am not sure how they can accomplish giving anyone a bath while they are asleep… think about it: they would need to put an IV on him (Nicky’s worst nightmare), and they would need to attach him to breathing tubes and machines to monitor him. Nicky is also adamant in talking to the Doctors about the wounds, remember, he’s not 6, he’s 16 and well aware of what’s going on. And… believe me, we do give him plenty of pain meds, I bring out the big guns for this, morphine.

Nicky is very emotional and told me that the reason he was crying mostly during this was not so much for pain but the fact that he felt out of control. He is used to just me doing it, I give him time and space to take off bandages at his speed and liking, but being in a situation where 5 nurses and 2 doctors were taking off stuff at light speed and picking on the wounds was upsetting to him and understandably so. Once he was all done I completely re-wrapped him, just so he could be more at ease. At this point he calmed down, he was OK and the morphine took the edge off for hours afterwards. He felt so good in fact he was OK to stop by to see the Easter Bunny on our way home.
Honestly, considering the risks of being put under anesthesia and how bad he feels afterwards when he wakes up, we have no qualms about our decision, err… his decision. Nicky was telling me just last night how he hates being under anesthesia, needing to get IVs etc and how much he hates that feeling of being groggy and out of it he is for the rest of the day. He would never want to do that unless it was for a surgery. So, for HIM, sedation is actually the cruel alternative. For HIM. And that’s all I know, what works for HIM. I would not dream of telling someone else what to do.

Clearly, the only thing I truly know, is my son. My Angel son. I love you Nicky!

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