Monday, February 6, 2012

For Your Information...Part 1

So, I have neglected my blog for sometime now...and I promise that I will be updating everyone on Liam's remarkable progress over the next week, but tonight I must put some thoughts to rest, so that I can sleep soundly.

For a many, many months I have not gotten any mail from my blog, because why would I? I haven't been updating anything. All of my friends and family share my life with me on facebook, where Liam is quite the superstar (if you ask me!!) and I have just been so very busy. This morning I woke up to find a comment on my blog:

"What kind of an evil person would KNOWINGLY take any chance of giving this terrible disease to her child? Every time he is in pain remember that YOU INTENTIONALLY caused it. It is your fault. You KNEW he was going to be subjected to a life of INCREDIBLE PAIN."

Now, most people would just delete this, but I am not most people. I decided, after a long, hard thought session, that I am going to leave it up. I am going to leave up the comment that had me searing hot mad all day long. I am leaving it up because I want other people to see it and hear the hate and ignorance that humans are capable of having towards people that they have NO idea about what they go through. I want to take a moment to address "Anonymous" since I cannot address them properly because they didn't have the cahones to leave their real name or contact info. 

Dear Anonymous:
Thank you for your uncalled for comment on my blog. Thank you for taking the time to read my entries about how HAPPY and LOVING and SWEET my son is, and then berate me for having children. Contrary to what you believe (since you KNOW nothing about EB or myself) I decided to have a child because I love children...and I can provide a nurturing, happy and safe home for rearing a child. I am neither selfish nor evil. I live my life to help others. I am a best friend, I am a good samaritan. I am a nurse, I am a helper. I am a strong, resilient, charismatic and loving person. And, above all, I am a mother. I try to educate people about EB. This blog was created so I could share what I go through with others going through it. Not to be subjected to your ignorant thoughts. There is a lot more to having a child than EB. Why should I deprive myself? Am I less of a woman because I have a faulted gene? Do I not have the ability to raise a happy, well adjusted and loving human being? I am not going to lash you, because believe me, I could. But, just know that I know you must've googled EB to even have found this blog. I know you read all the posts. And to know that I infuriate you enough that you had to write that just makes it clear to everyone who reads this, and all my other EB moms I shared your wisdom with, how we need to step up the game on awareness. You jumped the gun a little...sorta stumbled onto someone's blog that has a lot more knowledge on the subject than you would ever care to know. You hurt my feelings. You upset me...but you did not succeed in making me question whether or not I should be a parent, which was your pure intention. Just remember that only God can judge us. Only God can create a life as precious as my Liam. My son is the epitome of happy. My son does not live in constant pain. My son is loved more than anything in the world. I have more friends and people that love me than you could ever even fathom. No one likes ugly. And you have went out of your way to be hideous. Please be respectful of other people's lives. You never know what someone is going through or has been through. Your opinion doesn't count in the grand scheme, so perhaps ponder the idea of keeping it to yourself. You should be ashamed of yourself. 

Ugh. OK. Now that I got that out of the way... I feel better. Thank you to all of my friends that were so supportive and loving. I am so blessed by this life. God works mysteriously. I am far from perfect, but all things happen for a reason. When you find your purpose in life, it is magical. Being the mother to Liam is the most amazing and humbling experience. I wouldn't change anything about him, because then he wouldn't be who he is. Wishing that he didn't have EB would be wishing I had a different baby. At conception he was who he is. And he is phenomenal. He is beautiful. He is loving. He is my soul. And my husband and I love him to pieces. I have a mother who loves me, and who adores Liam. I have the more people in my corner cheering me on than I could ever have dreamed of. I have friends that really "get me" and really love me. I really wouldn't change a thing about my life. So, when you are reading this, and you get to the point where you want to say something crass or delusional...just remember, I really don't care, I have too much happiness and fortune in my life to entertain regrets. God bless you all, each and every one of you!


  1. Great post Melissa! Screw the dumb people, he/she's probably a child abuser anyways. The guilty ones are always the first to throw stones!


  2. What a sad life this person must live to feel the need to go out of their way and make hateful comments to someone else. In a way I feel sorry for them, chances are they have had someone in their life who was suppose to love them, treat them as nothing more than their flaws. 
    Dear Anonymous, 
    Our children are more than this condition, but yet without it they would not be who they are. I can guarantee Liam and others with EB are more loved and cherished than a lot of children born these days. It reminds us to be thankful for every day we are given and that our children are a gift to be treasured. I can guarantee that the days of physical pain our children feel are far fewer and nothing compaired to the constant emotional pain children feel that are born into home that do not want them and see them as burdens to be discarded. So, perhaps you should seek out those mothers to channel your anger towards. Or better yet, actually do something positive with your time, like helping the unwanted children out there, rather than cowardly hiding behind a computer screen and an Anonymous name typing hatetred at a wonderful mother you clearly know nothing about!

    - Jacobs Mom
       Aka Jennifer

  3. I am a mother of a 15 yr old girl with eb god gave of these children because he knew we would give our heart and soul to these children just shows you who he trusted with these angel and that idiot was not one of them

    Amy Kyle
    Proud EB mommy

  4. Well wrote I love it and he is a very very happy baby and so handsome to and ppl like that r crazy I mean that's like saying cause seizures and all run in my family I shouldn't have kids but u know what ppl shouldn't judge other ppl no matter what I have never met y'all but from being a fb I see u as a great person and u r such a great mother and I am very proud to call u my friend

  5. Dear Melissa,
    As we all know there are such cruel ingnorance in this world. You are an amazing mother and Baby Liam is an amazing fighter. I can't even imagine how I'd reacted to that post and you did a graceful job. Many prayers for you guys and much Love.

  6. Melissa, from one EB patient / parent to another WAY TO GO!!!!! I hope anonymous reads this.... I am proud to have my son with or without EB. I wish i had the patient to do a blog, but I fear I would have nothing to write about. You are a great mama and Liam is going to be a heartbreaker

  7. Fabulous Melissa! I hope that anonymous person thinks twice before they do something so stupid again. Well said! Go girl!

  8. Kerri Spinazola, proud Mom of Melina - EBSFebruary 7, 2012 at 7:05 AM

    I am so proud of you Melissa, and so proud to know you! You handle yourself with grace and dignity! I admire you so much :-). Hugs from New Hampshire!

  9. To Melissa: I'm proud of the person you are and how you handled something so hurtful, I'm proud of you for the way you spread eb awareness, but most of all I'm proud of the mother you are to that beautiful ray of light we call LIAM! I'm sorry if even for a second that ugly person put a "dent" in your day....As for you ANONYMOUS...who do you think you are to make such a comment and past judgement on someone's else life that you don't even know? It's people like you that is wrong with this world, Does anyone tell you not to have children so you don't bring into this world little hateful dictating bastards like yourself???? If you had a soul and heart these comments might mean something to you, but I doubt you do. Take a look at your miserable self in the mirror and realize that we are not perfect, we are human and we err just like you did when you past judgement on people that are very dear to me and my life would not be the same if they weren't in it! I will pray for your hateful ignorance. Kristen Malloy-Nicoli

  10. Melissa,
    Your a great person, mother and friend! Liam is one of the happiest babies! Be proud of yoursef. Don't worry about people like that say b/c they are unhappy with themselves!! I am very proud to say your my friend!!!!!!
    Tricia Rogers

  11. Ugh! You tell em' Miss! What a stupid, ignorant person that is. That's like telling me I shouldn't have children just because I suffer from allergies and there is a high percentage that I could pass that onto my children. Well guess what? It happened. Both of my children have allergies and asthma like me. Does that mean we are all less worthy of living in this world? No. What better person to take care of a child with "issues" as the parent who suffers from the same "issues". Our issues just make up a small percentage of who we really are. We are all beautiful in God's eyes and we are all thankful to have the love & support from our friends & family. You are doing a wonderful job raising lil' Liam and I am very proud of the Mother that you have become. <3 you!! Erin Barnett-Sawangsangsai

  12. I am so very sorry that anybody can be as heartless as the person who left you such an awful comment. You love your son, there are people out there who kill their innocent children and somebody has the nerve to give you grief. I am so sorry for the evil world we live in, sometimes I am afraid of what is going to happen to my own children in this world. You are an amzing mother who has a beautiful son that God chose just for you and your husband like he chose our children for us. There is a reason for everything and God is the only one who knows what our purposes truly are and he knew you went through it and still are and that is one reason he blessed you with Liam because he knew you would love him like your parents loved you.

  13. Oh my dear, sweet, friend...people like that can just go jump off of a bridge. They have no idea what they are talking about and just say things like that because they are so miserable in their own lives. You and Liam are wonderful and awesome people! You have come so far and Liam really has been an incredible blessing for everyone. I knew you were going to be a fantastic mom as soon as you (or Joel) told me you were pregnant! lol...If "anonymous" thought for even one second before he wrote that, he would realize that EVERYONE could pass something along to their children...that is life...All of us have something wrong with it manic/depression, a family history of cancer, schizophrenia...the list is never ending!! If everyone decided to stop reproducing because there is a "chance" of passing along "something" then the world would end...Liam is pure joy as are you. I am not a great writer like you but I hope I got the point across! Anyways, I love you and miss you like crazy and hope that you never lose sleep over these negative nancies again! Just on an ending note...what a prick! Who says that? Insensitive jerk! Ok, I'm done. Love you lots and super proud to be your friend!

  14. Hello. As a fellow EB mom I received the same comment on my son's blog. I am beginning to think it's a generic comment someone is posting to push our buttons..Don't let it shake your confidence or make you question your decisions. continue to blog honestly and from the heart. Even the negative comments give us an opportunity to educate...Keep smiling..