Tuesday, January 26, 2010

Just a few things on my mind.

Not too much is new recently. Ethan has been doing a bit better at night time,he is starting to sleep from 8ish to 2 then 3-530 which is truly a blessing compared to what I was getting of sleep. He hasn't really reached anymore milestones though he is cooing "talking" A LOT more! The boy wont hush lol but its so cute! He is also starting to try to sit up (I think) he will be laying on his back and start to pull up and gets about 1/4 the way then falls back..he will get it in time! I think it's still pretty early for him to be even attempting it!

I am really dreading March 1st. I am terrified of it. There's so many things up in the air for him and it is always so hard not knowing. I know God is in control and his will will be done,but it is a true test of faith. My biggest fear is Ethan dieing. I keep being told that that is not a possibility, but it always is when you have a major surgery,no matter how people try to tell you it isn't. I couldn't imagine my life without my son,he is my world. In the meantime I am just trying to make that worry a distant thought. I am also concerned that this surgery is going to make his feeling/movement/bowel/bladder worse. I don't really know anyone who's little one didn't have surgery right after birth so I'm not sure what the differance may be. Yet another one of those wait and sees.Another concern of mine..that I haven't shared w/ anyone yet bc honestly I'm not sure if I'm right or not is Ethan's bowel movements..I'm not sure if it is bc of the SB or if it is bc of all the rice cereal added to his milk for reflux but he wont go on his own unless I give him juice.He didn't have a prob with it at all until the rice cereal was added then it progressively got worse so I believe that is what is going on but I'm not really sure.

Another thing that has been bothering me recently is how some people react about Ethan's SB and SB in general. I don't want my son to be treated any differently bc he has a "disability" but I also do want it to be recognized, it is NOTHING to be ashamed of. I have been having numerous comments like "good thing nothings wrong with him hunh" or "oh hes fine,I don't know why you take him to so many appts" and I could go on and on with the list but why bother! Another thing that REALLY got to me is a aquantance of mine. Her baby has a sacral demple and they were doing a ultrasound to see what was going on. Her initial reaction was big concerns her child wont walk or will have to have surgery and things of that nature (which I do understand all to well) but it turned out it is just a demple and nothing more! Well others were saying "Thank God" and "What a relief" I know it shouldn't bother me bc if I were in her shoes I know I would feel the same.But being in my shoes I cant help but think...it's not that bad. I dont know if what I am saying is making sense or not, honestly reading it it doesn't to me,but Im not really sure how to express how I feel.Overall I guess I want people to recgonize SB is not a terrible thing and it is a disability but it doesn't define you. I want people to be amazed at what Ethan and others with SB accomplish vs. pretending it is not a big deal. I know we have a long long road ahead of us as we are only 14 weeks into Ethan's joyful life, and we have many many accomplishments to come. I can't wait to see what the future holds for Ethan and our family and I want others to be able to share in that with us too!


  1. I just wanted to tell you I know what you are saying and I totally understand. I think that right now you and I are having the same trial with comments and how others see our babies. It's one thing being a new mom and dealing with comments, but a whole new world since our babies are different, and yet so much the same. :) anyway..please know I understand. I also am having to hand my baby back over for surgery next month, and I understand the fears too. We, with each other and the Lord's help, are going to handle this next trial and come out better again.

  2. I get what you're saying. It's a whole new world just being a mom, but on top of that being a "special needs mom" when you never ever thought you'd have that title ... it really is hard to adjust. I'm still adjusting, but it gets easier after a couple of years, lol. Sometimes people's comments bother me, but I try to remember that they just don't understand what it feels like to be in our shoes and they aren't trying to offend, they just don't know what to say. So we have to extend grace to them and educate them if we can. I think we can go in one of two ways--we can be forgiving of others' blunders and misunderstandings, or we can go around looking for anything and everything to make us mad and offend us and live our lives being bitter and defensive and argumentative. I've had my moments in both places, but I try to shoot for the former.

  3. btw, not saying that's what you're doing (looking for something to get offended at) at all! Just my observations on life in general, lol

  4. I wanted to say what a beautiful baby you got there, a real gift of God. I am an adult with SB I found your site just looking for others with SB to get my website out there to encourage others that are starting the process of living with SB. Please check out my blog and that goes for anyone else that reads this one. I want to be an encouragment to everyone