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Wednesday, December 9, 2009

Understanding

I've finally arrived.

I'm at the place in this journey as a new special needs parent where I'm in search of understanding. And it's hard to find.

I do love my friends and family, and as I'm learning how to navigate this new way of life, I try to share everything I've learned as I go. That's part of the reason I have this blog. But I'm finding that some will "get it" and some won't. Why? Because they aren't as vested in this journey as I am. They don't have as deep an interest in it. Not that they don't love Christian and want the best for him, they just don't understand. And when they leave our presence or get off the phone with me, they don't have to think about it anymore. Not their fault, not at all. But this is where I've arrived, it's where we've arrived. The realm of understanding how a child develops has just splintered off and we are now on a foreign path that is difficult to fathom for most people.

I'm not mad about this at all. I accept and embrace this path because it's ours. I don't expect anyone to really understand unless they have a special needs child. It's like a secret club. And I can't say that I've completely given in to it or accepted it 100%. But as I see other special needs children or meet other parents of special needs children, I feel a connection, a comfort...an understanding.

No, I'm not mad. What I do find myself feeling is frustrated at the lack of understanding. My patience meter is running on low these days as it is, so beware. But how many times do I have to explain this treatment or that treatment? Do I mind explaining it on my blog, absolutely not. And those that follow my blog have some sort of understanding, at least. But people in my every day life who are trying to make sense of what this world is like for me have no idea.

They have no idea what it's truly like to love your child so much you bargain ridiculous things with God in your head just to test yourself to see what you'd be willing to give up. They have no idea what's it's like to love your child so much you would do ANYTHING for them and their healing. It actually becomes your career. I mean there's the obligatory "I'd do anything for my child," we all have as parents, but to live that day to day is a different story. To look at your child every day and think, "Okay, what will I do for my child today that will help him heal," is also an entirely different mindset.

"Are these treatments working?" - I believe they are. Which treatment, who knows? Who cares? Something is at work and I'm not willing to stop all treatments but one at a time just to find out.

"So did the doctor tell you when he would get better?" - No, because he's not a psychic. There is no date written in time that we as humans have privilege to. And I'm not concerned with "the moment" he gets better because we have to accept him now and forever. There won't be a "moment." It is a process. It is a journey.

I think the hardest part of this arrival into the search for understanding as a special needs parent is that I'm starting to realize that people might be scared of Christian. By this I mean, those that know and love us are reluctant to hold him or care for him because it's scary. They don't know how to hold him to where he's comfortable. They don't know what do to if he coughs really hard or sounds raspy. They don't know what to do if he's crying. So they'd rather not do anything.

This is where I get frustrated. Not taking into consideration that it took me months to learn how to take care of Christian, get to know him again, learn with him, learn for him, I expect that those around me are doing the exact same thing. Is this fair? No. But I find myself frustrated, saddened, a little angry that anyone would be afraid of him. He's just a baby and you just take care of him differently. What's the big deal?

It is a big deal. It's a huge deal that's just part of my everyday life and at this point I can take care of Christian with one hand tied behind my back. So why expect everyone else to be able to do that? I don't. But I do expect people to want to try. For example, my grandmother goes in the chamber with Christian. She mentioned that she's noticed a change and sometimes that change is greater from one day to the next than even one week to the next. She gets it!

My husband says I should be more patient with people. He's probably right. It's just that when people are what seems to be afraid of Christian, I feel like they don't believe in him. And you all know how I feel about people who don't believe in my child.

So I'll make a deal. I will have more patience, if I can receive more understanding. Okay?

Yeah, I know it's not that simple.

Understanding. It's going to have to be mutual. While I'm searching for it, I'm going to have to give it...along with that whole patience thing my husband was talking about.

11 comments:

Brooke said...

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

Lucy and Ethel said...

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'

ferfischer said...

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!

Rochelle said...

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?

Alicia said...

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.

Colton's Journey said...

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!

Anonymous said...

Thank you, Princess.

Anonymous said...

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

Jen said...

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.

Shauna Quintero said...

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.

maz said...

(((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...

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