Comments on Christian's Journey: Understanding

(((Shauna))) I really hope that those around you s...

2009-12-16T05:09:10.721-08:00

(((Shauna))) I really hope that those around you show as much understanding as possible. If they are scared of Christian, then maybe they need educating so that they're not scared - but must be wearing you having to do that legwork really so that people can understand. I'm glad that you have people in the same boat who you can share things with, without the need for clarification or education. Thinking of you...

Thank you to everyone for your posts! You keep me ...

2009-12-12T22:18:14.519-08:00

Thank you to everyone for your posts! You keep me going and I read and reread everything you write. I'm so blessed that you share your story and can truly understand what this day to day life means.

Love and blessings to all.

Some of us are born into special needs, and some o...

2009-12-12T13:30:15.725-08:00

Some of us are born into special needs, and some of us aquire them. Family around you does not adapt as easily. I have found that having "special needs friends" is just as important as having family and friends. Sometimes you need that person to vent to that isn't your mom or your best friend, but that person that you can say "I hate sucking trachs" and they can agree and complain right along with you. When one of my micropreemies finally rolled over for the first time at 8 motnhs old, I was so excited to tell everyone around me. I got the worst answeres ever, inclucing "isn't that a little late to be doing that?". It didn't matter that he was 8 months old, it mattered that he made progress! Sometimes you need to back up the family and friends and make some peace in your own head. Connecting with others that have the same thing going, or something similar has helped me so much.

I am a mom of 9 kids, 7 of them preemie, 5 of the special needs, 2 of them exteremly special needs. Bond and pull your resources, that way it is a little easier to be pantient with those that do not "get" it.

I can never know what you are going through on a d...

2009-12-12T07:00:43.770-08:00

I can never know what you are going through on a daily basis, but I have been following Christian's progress with an open heart and a bucket of prayers - for Christian, for you, and for the strength to walk, sometimes crawl, through it all. Cindi

Thank you, Princess.

2009-12-10T21:10:31.450-08:00

Thank you, Princess.

I totally get it. We have miracles amongst us and...

2009-12-10T19:08:22.637-08:00

I totally get it. We have miracles amongst us and God's work is visible everyday on some level. I have a hard time with my friends (from before Colton was born.) They don't understand. They don't have a clue what its like to live day to day with his needs. They hate to bother me with their kiddos "petty needs" as they put it. I tell them well all have needs some are larger than others. I tried to find people with similar situations through the family support network. Unfortunately i haven't found any matches yet. I live in a small community and that doesn't make it any easier- but maybe you'll find someone? I love your blog and love to read it. I started my blog for the same reason. I think its great your family goes in the chamber and gets involved! Have you asked your dear friends if they would be interested? Thanks for sharing your highs and lows!

I get it and totally empathize with you. Thank yo...

2009-12-10T14:12:39.803-08:00

I get it and totally empathize with you. Thank you for posting this. Thank you on behalf of all those that get it, all those that don't get it, and most of all, for you, Shauna. You need to be able to say these things and express these emotions. I am glad you can do that here.

I wish we lived closer because I do get what you&#...

2009-12-10T08:34:51.762-08:00

I wish we lived closer because I do get what you're saying, and how you're feeling. I wouldn't be afraid of Christian, and I wouldn't mind helping you with him. Others that seem afraid may not necessarily be afraid of Christian (himself) but of the unknowns and the things that frighten them - like what to do if he choked, etc. I guess what I'm trying to say is that I can't believe anyone would be afraid of Christian (himself) but maybe its the health concerns or lack of knowledge or understanding they have of his conditions, the trach, etc. that they are worried about or afraid of. Does that make sense? Its not meant to excuse their unwillingness to help out or their standing back or off from being involved in your lives and extending kindness and love to Christian. Patience and understanding - whew, you have your work cut out for you in both when it comes to other people that don't share your journey as closely as you do I'm sure. I will pray for those around and near you that they have peace about Christian's journey and health conditions and clearly see that he is a baby that needs love more than anything else, and that you and your family need their support and full understanding. You keep sharing on your blog - its inspiring to many of us even if we are on the outside looking in. Much love and hugs for a wonderful Christmas with your family. Hoping and praying for continued healing and improvement in baby Christian in 2010! And, when's Lola going to make her grand entrance?

I really get this, I do. Most people don't ge...

2009-12-10T08:00:27.437-08:00

I really get this, I do. Most people don't get it. But, "our" world is pretty big, and there are lots of people who get it, and even better, they are amazing people who are always available to listen, offer advice, or help out. When I really need understanding, I turn to these people. Figuring out how to work with everyone else is where I struggle. Most people are kind of intimidated by things they don't understand. The more they get involved, if they choose to, the better understanding they will have. But it's really up to them. Hugs. I sure wish I could come over and spend some time with you both - it's amazing how people who are familiar with "our kids" will just jump right in. It's so great!

An(other) excellent post. When our baby was diagn...

2009-12-10T07:59:12.802-08:00

An(other) excellent post.

When our baby was diagnosed with SMA (genetic, progressive neuromuscular disease), I was stunned to see which friends rose admirably to the occasion and which ones retreated.

And then our baby died. I was likewise surprised as to who stuck around and who didn't.

I think that those with special needs children and/or who have lost children bond so instantly regardless of disability because there is simply no need to explain a thing. Those 'outside the box' typically don't understand, nor - in most cases - do they WANT to. I don't think it's lack of caring but a sense of helplessness and perhaps guilt that their children are healthy.

Meanwhile, the rest of us will see the blessings that are our children - all of them. Do you wish Christian hadn't fallen into the pool? Of course. Are you willing to do whatever it takes to help him in all ways? Of course. And you'll be thankful for the opportunity to be a part of this very special assignment.

Don't apologize for a lack of patience! Just come here and vent if you need to; I doubt there's anyone here who hasn't felt the same...

'Lucy'

((((HUGS)))) Shauna...........I can feel your frus...

2009-12-10T03:39:58.200-08:00

((((HUGS)))) Shauna...........I can feel your frustrations through your blog........Good luck with your journey for patience and understanding...... Your feelings are definitely justified.