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I'm having a little bit of a conundrum, or something of some such. For those out there who have undergone transplant, and had small children (when I say small, I mean under the age of 12 yrs old), what did you say to them? I've been using the 'don't ask, don't tell' method and it is proving to be a MASSIVE FAILURE! I think when my 'big day' comes, and I'm going to have to go under the knife, I do want to see him when I wake up, I do want to see his little smiling face, just in case, you know?
However, my child is a worrier. Just like his mommy! I was hospitalized in February, and I don't exactly remember how he found out that I was in the hospital, but he did. And I got a phone call, from my cellular phone, in my hospital bed, from my child's Guidance Counselor telling me that my son was vacant in school today. Vacant in the sense that he was clearly there, but not there. He was very empty and sad...and even in the over-crowded NYC Public Schools (where their can be up to 40 children per classroom), his teacher noticed this and pulled his aside to ask him what was wrong. He told her "I'm sad because my mommy is in the hospital because her heart hurts". Of course, as any parent would, hearing this tore me to shreds. I was actually being hospitalized for Ascites & chest pains, this is what gave him the idea that my 'heart hurts', since he clearly already sees my big belly, and to him, for now, that's almost normal to him. It's become normal to me, it's a part of my life I cannot change. I've learned to simply live around it, stretch my back when it hurts like hell, wear clothing that's not tight like I used to like to wear. I call them my 'tummy illusion' outfits! And my closet is full of them! Being a 30 year old female isn't easy with Cirrhosis. I'm not, I guess, what you would call the 'typical' Cirrhotic. By 'typical' I mean, statistically, Cirrhotic's are male, over 40. So, this has been a particular blow on my ego! I don't mean to sound shallow, but I've almost grown accustomed to people telling me that I'm pretty--it's also annoying, when egotistical-males whistle at you walking down the street--but, to be honest (like I always do here!), I kind of miss that. I've always took pride in my looks, grateful in the fact that by just rolling out of bed, I don't need a lot of make-up, just a little lip gloss, sometimes not even, and people would STILL say that I was pretty. I'm not going to be pretty anymore...or at least that's how I feel. I feel like I'm going to be a freak with a freakish scar trailing accross my body, never living the way I was, never being the same, and lately, I have asked myself: What kind of quality of life will I have after Transplant? Do I want that kind of life?'
Well, I know I've now strayed off the beaten path (lol) of the title of this particular page, so I will get back to what I wish from all of you.
I feel like my child is going to see me and completely freak out, get depressed, flunk school, all of the things that I, too, went through as a child seeing one of my parents die. Which, either way you look at it, in a small way, or a big way, a part of me is going to die once I get my Transplant, and I don't want it to, but, hey, that's the price tag for living, isn't it? Maybe I'm expecting the worse out of all of this...maybe my 'pessimistic negitivity' is clouding my better judgment. I don't want to have my son find out about all of this like I did...like BAM ...this is what's happening to you, like it or not! So, I now ask all of you, I rephrase my previous statement, and I am asking EVERY parent out there, Transplant patient or not; How would you 'break this' news to your Child? Thanks for listening, your opinion matters to me! Till Next Time...
I am a 31yr old Hispanic Female w/Cryptogenic Cirrhosis going through my Pre-transplant phase. This is for ALL out there who are suffering w/any kind of liver disease and wish to tell their story! You can contact me via Facebook or Twitter on the bottom toolbar. Also, be sure to click on the orange box that says "+Share" on the toolbar to share this page with your friends!
My Liver Disease Journey...
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Just to give everyone a gist of what kind of a blog I'm trying to create here, it's basically for people who have been diagnosed with Liver Disease (Cirrhosis, Cancer, etc) and are awaiting a liver transplant. I am sharing my story (like an open book), and keeping this also as a 'journal' for what I am going through due to my illness and my life & past experiences.
My name is Victoria Santiago and in 2007, I was diagnosed as a Cirrhotic at the age of 26 yrs old; I am now 30 yrs old. This blog is for those who know what having liver disease is like; the Dr appt's, the freaking out when Dr's can sometimes be so cold & rude in telling you that you're probably going to die from this disease. I walked into my GI (Gastrointestinal) Dr's office, got a liver biopsy done because I noticed some distention in my belly and my AST, ALT & Alkaline Phosphotase came back irregular, which are all liver enzymes. I walked in to try to find out what the heck was going on, and he assured me a biopsy would give me that answer. For those who have had Liver Biopsy's...I feel your pain! It's awful to lay there on your side having a HUGE needle poked under or in between your ribs TWICE for a liver sample. Well, my results raised more questions than answers. It was determined by the pathologist that I had a transition to Cirrhosis, and was consistent with Chronic Hepatits C. However, my blood work shows, from 3 different lab's, that I was diagnosed with Hepatitis C, but I have no virus, the HCV test always come back as "insufficient or mutated virus" meaning that there is no Hepatitis C virus in my blood; I was even told that I can live a long and happy life without ever having it's effects. So I knew this pathologist made a mistake in that diagnosis, and future Dr's whom are liver specialists concurred. I went through a whole mess of 'liver specialists' for year's, seeking a specialist that would take my insurance, which were few & far between. Long story short (too late!lol), I just started going to Mt. Sinai Recanti/Miller Transplantation Institute about a month ago. I also have Pulmonary Arterial Hypertension (P. A. H) and am seeing both a Pulmonologist & Cardiologist (had to get a Heart Catheterization to determine the condition of the P. A. H earlier this year) and I saw them for the first time on July 11th.
I would like for everyone who are or has gone through transplantation to share their stories here for moral support (which helps both you & me, for there is strength in numbers), informative links, websites, and help in obtaining what we need and what is out there for people like us. This is by far the biggest threat I have yet to deal with, and being a rape 'survivor' from the age of 18, a former drug/substance abuser that led to the loss of so much of myself, my dignity and self-respect (currently celebrating my first year in sobriety, makes things even harder, but it is getting better with time), is saying a lot. Fact being, I'm a mother of a beautiful son, a daughter of a caring mother, an aunt to 5 precious girls, and a sister to three brave women. Granted, I've made some awful mistakes that I may pay the ultimate price for, but no one is perfect and no one deserves to go through all of these awful things in life, but to have to go through them and learn nothing...well, that's just not very smart! Believing in God has helped me A LOT and strengthening my relationship with Him has not been easy, but I would be lost without my faith. Even though I have family support, it's hard for them or anyone to understand what kind of pain I'm going through, except those who are going through it, and even then, everyone has their own unique story in their 'path to recovery'. I'm inviting those who wish to share their story, wisdom, and strength with me, on my blog. Thanks for reading & please feel free to share your story with me!
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My oldest son was 3 when I was diagnosed with liver disease. I though about what I would tell him and when. And came to the decision to tell him not long after that. I explained that Mommy was sick but that I was going to get better. I told him that the liver I have was not working well and that I would need a new one. And for a while we left it at that. He has since then come to me with questions. I promised him that I would always be 100% honest with him, and asked him to be honest with me. When he tells me hes scared, I tell him I am scared to but we have to be strong for each other. Hes 6 now and knows whats going on in more detail. He is finally understanding what I can and cant do and why. He asks me every now and then if I am OK and if I need anything. He says that it makes him feel better when I tell him the truth. Ive had to have many talks with him on things that most parents wait on. Life, death, birth, you name it! Honesty works for us. Just let him know that if he has questions he can ask and that just because you are sick you are still his momma! Always!
ReplyDeleteThat's awesome, Kim! I've ALWAYS been hosest with my son, too, because kids are SO misinformed these days on things...when I was growing up, I didn't even know what a male organ looked like! I had no brothers, and the first time I saw it, was my 'first time' & it was SCARY!! My motto is, 'If they're already asking YOU questions about something...then they're old enough to know what is what!' I had 'the talk' with my son a few months ago, and I was wondering if I was giving him TMI at so young an age (@9 yrs old), and I asked MANY people and they told me the same thing...'if he's asking YOU about it, then he's old enough to understand the answer'. So, without hesitation, I told him EVERYTHING! And, to my surprise, he was ALREADY misinformed on some VERY IMPORTANT things (like he heard of the word 'condom', but he thought it was something that you give a girl to eat!), so I gave him the whole schooling on that, he's an only child who lives with his father, so he (strangely, like me, except vice versa) had NO IDEA what a womans organ was or looked like. I know I'm giving TMI, but this is just an example of how crutial it is to be honest with a growing child, especially at that age (now 10 yrs old) when his OWN body may start to feel the effects of puberty. He was in shock when I finished telling him the facts, had TONS of questions, &, thanks to some VERY graphic movies, he kinda already knew what sex was, just not the 'specifics', so I told him that too, got on a medical website and showed him what women have. He thought it was gross, but he also had that look on his face like 'WOW! So that's how it works?' Preventing conception, all of the STD's that are out there...these are VERY IMPORTANT things, and, even though he will learn SOME of it in sex-ed, I wanted him to hear it from ME, and I told him to NEVER be embarrased to tell me ANYTHING, and he's completely open with me.
ReplyDeleteHowever, this whole 'liver failure' is VERY different for me. My son is 10 and I am 30, so their's only a 20 year age-gap between us, so I can relate to him, sometimes a lil better than his dad, who is older. I know that when I was young, and my father was diagnosed as 'terminally ill', I started to cut-classes, play hookie, smoke cigarrettes, marijuana, drink beer, have 'very casual' sex, and all this other negative stuff. My son IS LIKE ME IN SO MANY WAYS, and it scares me TO DEATH to think that he will react this way to this! I also experienced SEVERE depression, and, when he finally passed away, at age 12, my life took a turn for the ABSOLUTE WORSE! That's when my major substance abuse started (IV drug use, etc). I hate to say it, but substance abuse runs DEEP in my family, on both sides & I want to make sure that I can do ALL IN MY POWER to prevent the 'chain effect'. I guess that's my biggest fear, you know? I did find out that there's a counselor who will help me speak to my son about this...I may contact them, I don't know. I've had 'communication' under control with my son up until now, and I'm the one doing all within my power to take these 'preventative measures' so he won't get his first girlfriend pregnant, or worse, catch an STD or substance abuse problem, & now, I feel like I MAY BECOME THAT SOURCE for these problems! I know it's TOTALLY POSSIBLE because that's what happened to me! It's a very odd position...your son was 3 yrs old when you went through this, my son is already 10 yr's old, and, I MUST be prepared with answers that I won't regret telling him! I don't want my complete honesty with my son make him feel like I do, like this situation is EVER SO DIRE, which it is.
Well, thanks for your comment, Kim! Keep them coming, as you can see, not many people leave me comments!Thx