Wednesday, February 8, 2012

For Your Information...Part 2.....Pssssst...this one is happy!!!!

Oh, boy...time sure does fly. I wanted to start this blog to chronicle Liam's life, and somehow I let a whole darn year go by without updating. Things just get so busy, and having a very active little man just adds to the craziness.

So...Where to start???

Well, we have met all our milestones with ease, with the exception of walking. Liam is still not walking yet. He he is cruising and pulling up, and he enjoys taking walks with you if you hold his hands! We are no longer wrapping his feet, or any other part for that matter, because 7 months ago I figured out that we had come to the point where it was doing more harm than good. So, if you adjust the time to his current activity level, we are still pretty much on point. He wouldn't even put pressure on his feet 7 months ago, the bottoms were very blistered. Through meticulous wound care, various ointments and trials, we have clear soles. He has been putting pressure since I stopped wrapping, and they cleared themselves right up. Mind you that he no longer does reflex kicking either, he doesn't rub his heels anymore or scrunch up his toes. We still have feet problems, don't let all that positivity lead you astray...they just aren't on the soles, the migration has occurred onto the sides now. Currently we are working our way onto his arch, and I am keeping my fingers crossed that it doesn't impede his progress and make him not want to walk. If it does, well...again, its life. They come and they go. We are also dealing with some nasty blisters on his hands. Not a lot of blisters, but the ones that are there are tough, deep and they wont go away! He is pretty unphased though. Barely ever complains about it. He has figured out how to play around the boo boos and to be gentle. Oh, my...he is the most gentle and gracious baby I have ever seen. He really is careful about his skin, and he figures out how to manipulate his environment to make things work for him. Of course, he still gives us a piece of his mind during wound care...but at this point, it is more out of boredom and frustration. I rarely ever make him hurt. I think that it is a relief to get the blisters popped. They don't itch or burn after they are drained (in my personal experience) and I think that in his 15 months, the little fella has figured that out. We are down to 2 sessions a day...maybe an hour in the morning (bottle, wounds, and clothing on) and since he likes his long baths, it still takes about an hour and a half at night. So, he has improved much in the year I have been neglecting my blogging! I am very happy to say that this time last year I was under a tremendous amount of stress and sadness about his skin, so much that I couldn't imagine it EVER getting any better. I have to admit, I had heard so many people tell me that the first year is the worst year, I actually prayed to make it fly by so I could just enjoy him and not stress about his skin so much. So, here we are...and it proved true for him. Thank you God. Although, I do wish that the time wouldn't fly so fast, the lesson here I have learned is that "that day" that you wish for, always try not to rush it. We always end up at today, so I am just trying to revel in every moment of my life so that I dont miss a thing when I look back. Everything has its stage and every thing eventually passes. I am really not stressing his skin anymore. I have an arsenal of remedies that I can fire off whenever we have an issue. We have a small stock pile of different wound care supplies, and ABOVE ALL, I have learned so much from the EB community and through trial and error that there is no blister that cannot be, or handled. I'm not cocky enough to say "Oh, I got this" but I am enlightened enough that I do know what to do. Thankfully, because now I can pass it on to others and hope and pray that they have the same successes!! So, besides our hands, feet and knees...we are doing quite well. He has my skin...yup...but he also has my attitude!

Lets see...what are Liam's favorites?? (Right, other than Mommy and Daddy?) Well, he loves the Backyardigans, I tell you that! He bops his head to the music and laughs at them. He likes mac and cheese, black olives, mandarin oranges, chicken parm, jello, banananananas, pirouette cookies, crackers, coooooookies, our pets, fish(ies), loves being read to, cars (cahhhhhs), buses, planes, cats, balls, computers, butterflies, the pool, walks, the beach, bird(ies), feeding the birds, pens, phones, remotes...wait, shouldn't I just tell you what he doesn't like? Because the kid pretty much likes everything. There are, of course, a lot of foods that no longer tickle his fancy, but he is really agreeable and excitable. He is very easy to please. There really isn't much that makes him cringe. He is such a happy baby, he has fun...he really does. He loves to clap for himself and aims to please. He loves the praise we give him, and he gets a lot of that. We cheer and squeal for everything, and it has reinforced some really cute behaviors. He rarely even gets told no, but then again, he did just start cruising around. He hasn't officially gotten himself into trouble yet. (Well, tried to eat a pen the other night, but I nipped that one.) Oh, his favorite is when I run away from him and hide behind a corner. He anticipates my reappearance by cocking his head towards wherever I have run, and when I come back out, I jump out and run towards him or past him and behind some other door or object. He LOVES that. He can be crying his little heart out and if I play that game, it gets him every time. Most adults will look at me like I am nuts (we do this in public, yes we do) but I don't give a poo, it makes my boy hysterical. Can't beat that. He is so loved. He is such a little blessing. My life is completely perfect. He was what was missing. 

So, you asked how I am?? Well, thank you! No one ever asks about me anymore! 

I am well! Into my last semester of clinicals! In May, when I graduate, I will be an RN. Such an accomplishment for me to have done all this while taking care of the rest of my life and keeping my sanity! I am so excited that I am going to be able to help people in the way that I want to. I can't stress enough that nursing is my calling. It was what I was meant to do (well, taking care of my family also) and it is where my passion is. I'm going places, you wait! :-) 

I have recently lost almost 40 lbs...YEA!! Got rid of that pregnancy weight, still got some to go, but I can sure tell you how much better I feel about Melissa. I am really putting my pieces together. Getting to that place of self acceptance and confidence. It has been such a long road for all of my struggles, but I will say that I am happy with who I am. Finally. Whew, that actually felt really good to say that. I am really happy with the way I handle motherhood, too. All too often us moms question whether or not we are good, worthy moms...and I can honestly tell you that I don't ask this. I know that I am a good mom. The 4,000 pictures of my smiling kid gave me that idea. And the smile at the end of the day ( I got a push to the nose when I left and snubbed when I got home.) 

Well, that is the beginning to a new year of consistent posting. Like always, feel free to leave me your comments, even if you seem to have a problem with my happiness...and if you are in any way involved with EB and need a friend, feel free to email me. Also, I am on facebook at Melissa Krawiec-Curtis (...never scared to leave my name anywhere) and I do accept friend requests, on the honor system that you really want to be my friend and not request me maliciously. Toodles for now, God bless!!

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!