Cross-Blogging ~ Virtual Craft Show

So, over on my newest blog, The Crazy Creative Corner, we're having the First Annual Virtual Craft Show and, yes, I'm a part of it.  I now not only have a blog (or two) but I have a Facebook page and an Etsy Store all of which you're more than welcome to visit me on (and, of course, buy!).  Anyway, check out today's blog, here, and see what's going on as well at take a peek at some of the items over on Etsy that I have for sale.  Here's a sneak peek of a few items:



Christmas Dangles



Spina Bifida Awareness

Denim Dreams



Christmas Tree Dangles



Christmas Holiday Dangles



REDEFINING SPINA BIFIDA ~ LIVING LIFE FULL-BORE

Well, my other loyal subject in the Procrasti Nation has sent me her answers to my nosy questions.  We're closing out the month of October discussing Spina Bifida.  Karen (aka Scasmflop) over at Carson's Corner let me ask her questions about what she went through when she discovered Carson has Spina Bifida (SB) and some advice for those who may find out their child will have a disability. 

See, here's the thing, a disability does NOT mean that child's life is valueless and should be terminated.  Karen was already far enough along in her pregnancy her doctor didn't even bring up abortion as an option to her (it wouldn't have been an "option" anyway, as far as she and her husband are concerned) but others have been told that "the child's quality of life" would be poor or not worth living.  What that really translates to is "your life will be harder and you won't be able to do things others do."  Well, guess what, having a child, with or without a disability, changes your life.  It makes it harder.  It changes what you can and can't do.  You have someone else to think of, now, other than just yourselves.  If your child has a disability, that doesn't make life worse, just tougher.  And, as they say, what doesn't kill you makes you stronger.  Are you willing to let that child be stronger?

Another great resource is Spina Bifida Kids and you can follow links to other blogs and see these a-MAZ-ing kids and their loving parents.  Parents who decided not to take the "easy" road and abort these precious lives.  Parents who decided even a physically disabled child deserves a chance at life and to bring joy into someone else's life.  Here is the mother of one such child, Karen and her adorable son Carson.

M&T:  How far into your pregnancy were you when the doctor informed you there was a problem with Carson?


Karen:  32 weeks

M&T:  Did he actually say there was a problem, or just indicate a need for further testing on your baby and what was your initial reaction to this?

Karen: My Ob detected what he thought to be a cyst on myself- possibly a ovarian or uterine cyst. He said those are fairly routine but I can’t rule out for certain that the cyst is not on the baby so I am going to send you for further testing.

M&T:  What was your immediate reaction to being told Carson has Spina Bifida?

Karen:  shocked, scared, sad, mad, hurt, confused, couldn’t breathe.

M&T:  Do you recall if you noticed, at the time, what your husbands’ reaction was?

Karen:  Pretty much the same as mine.

M&T:  I know you did Internet research into Spina Bifida after learning Carson has it. What was your emotional state as you learned what it was and what it could entail for him?

Karen:  Some info helped me relax while other info scared me for him. It was a Russian roulette game with info.

M&T:  I know you’re both Christians, do you feel your relationship with God was affected by these circumstances that were occurring at the time?

Karen:  I would say that I’ve realized more how much He is in control and not me.

M&T:  What about your marriage relationship, how was it affected at the time?

Karen:  We have a very strong relationship and this really didn’t seem to help/hinder. We just stuck together, leaned on each other, cried together, prayed together, but also laughed together and focused on what really mattered.

M&T:  I know when Carson was born, they insisted on a C-Section birth in order to reduce as much trauma to his little body and spine as possible, were you able to see him immediately after his birth?

Karen:  It was about an hour after his birth before I was able to see him. He went straight to the NICU and I was transported to recovery. I didn’t think I would get to see him till the next day since he was to be transported immediately to Childrens… I had to stay at Hollywood Pres. for 24 hours and recover. However, while I was in the recovery room I overheard the nurses talking. One nurse kept asking about moving me out into my room … she said I was ready and they needed the spot in the recovery for another patient. This other nurse adamantly told her that I was not moving anywhere till I got to see my baby. He was on his way to see me and we were waiting. I quickly called out to her and ask if I had heard her correctly. She said, oh honey yes, you are gonna see your baby. I squealed!!!! Sure enough about 30 minutes later they wheeled him into the room. He was in a transport incubator. I cried with joy. He was so perfect. They let me reach my hand into the hole and touch him. I just stroked his face over and over and prayed for him. They stayed for probably five minutes then he had to transfer. It was amazing!!!!

M&T:  Do you recall your emotional state at that particular time?

Karen:  Overwhelmed…. so many emotions I can’t even explain it. Joy, wonder, anticipation, fear, love, exhaustion.

M&T:  Did you, at any time immediately after his birth, consider all the things you and your new family would be facing in dealing with Carson’s Spina Bifida? Can you tell us some of what was going through your mind at the time?

Karen:  Not really. His birth and seeing him made me just want to see him more, hold him, and take him home. I was worried about him in some ways but also just felt a perfect peace that God was taking care of him.

M&T:  I know that there have been some physical difficulties for Carson, he had a broken leg immediately at birth and it’s broken a couple of times since then. How fragile are his bones at this time? Is he able to bear weight on them, yet?

Karen:  His bones are fragile, how fragile is unknown exactly but we have to be very careful. Weight- bearing actually strengthens the bones so we currently do about 30 mins 3 times a week in a mobile stander. The more the better!!!! This is why we need to get his braces so badly. He needs more standing time, but currently he requires a supine stander in order to do that. We cant afford to purchase one so I have to take him to therapy and do that, and that’s limited for time.

M&T:  How much time do you have to spend on a daily basis to work on Carson’s physical therapy; getting him to get up on his knees, working on his crawling, whatever other exercises the therapists have given you for him. And, how much more difficult is this when you have another son who’s 6 months old and probably beginning to think about mobility, himself?

Karen:  This is hard to answer. Each day is different… Part of that is having a 6 month old, and part of that is just daily schedule. Also some days Carson seems willing to work and other days he just doesn’t. I’ve learned when to push him and when not to push him. Pick my battles- I guess. I’d say on average we spend 1-2 hours a day on physical therapy activities.

M&T:  Give me your best piece of advice for women facing the birth of a “disabled” child and name three web-sites you think would be good places for them to go for support and/or information.

Carson and one of his many "girlfriends"

Karen:  It’s gonna be fine. Your baby is a precious, amazing, and a special gift. There’s nothing that is going to change that. Love is not based upon physical expectation. Do not grieve or fear, just trust in the Lord and His plan. Don’t lose sight of the great blessings you do have. Cherish them, and search for everyday wonders, and miracles.

 As far as websites go it would depend upon your unique situation. There are online support groups for everything now-a-days. I recommend finding friends who understand your situation… it’s been one of my biggest blessings and comforts. Try babycenter.com, facebook, or Parents.com.

OCTOBER ~ HEALTH AWARENESS MONTH

You know, our health is nothing to mess around with.  I know, some of us are disgustingly healthy, over-all; and, I know, some of us are crazy hypochondriacs (or afraid of becoming one!) but we need to educate ourselves about things that can seriously affect our lives.  As in, end our lives or, if you're lucky, just change them in a drastic way.  To find out which month of the year focuses on which health issue, you can visit the PCI Health Training Center's Health Awareness Monthly Calendar for more information.  They'll also give you links to each site that can educate you about the specific issue that may have touched your life.

I have two issues that have, in a very small way, touched my life so October is the month for me.  The two issues celebrated in October (yes, "celebrated," you'll understand why as I go on) are for Spina Bifida Awareness and Breast Cancer Awareness.  Neither one have affected me, personally, but I'm friends with those it has.  One has the BRCA gene (which guarantees an 87% chance of having breast cancer and over a 30% chance of having ovarian cancer) and the other friend has a child born with Spina Bifida. 

I'm going to ask interview-style questions of each lady and post them here this month so you'll get at least two more posts before the month is out.  The first one will be for Breast Cancer Awareness.  This can affect both men and women (yes, men, you can get breast cancer, too. Be vigilant!) but my focus in the interview is (obviously) going to be more toward the feminine POV.  There are things you can do and places you can go to get information on either of these life-changing issues and I'll try to have links to them.  One place you can go to support research for breast cancer is Harry & David, a site that specializes in pears. Yes, pears! They have special ones for the month of October to benefit breast cancer research, chocolate dipped pears that have been dipped in two blends of chocolate, one of them pink. (droooool!)  If you know someone you'd like to show support for, this is a good way.  They're a little pricey, but, remember, 20% of the proceeds from these particular pears go to breast cancer research.

Not a bad way to be extravagant OR show your support!

(stay tuned!)

Support Systems (or Trust His Heart)

A little while ago a friend asked me to be her friend/family member that put down my thoughts about her son, Carson. Carson was born with Spina Bifida, but he's one of the happiest little boys I've ever met. Especially, it turns out, if there is a fireworks show going on. That boy LOVES bright lights!
Anyway, here's what I wrote for her. I'll include the link to the blog at the end. If you know a family with a child who has Spina Bifida, or any Special Needs child, this is a wonderful sight that shares not only the ups and downs of raising a Special Needs child, but the pure joy as well as loving encouragement.

Family/Friend for Karen
I've known three families in my life with a Special Needs child. The 1st wasn't as sobering or frightening as the other two, but he had needs none the less: Luke was born with his left eye missing. He has the lid and socket, but no eye. I remember his mother's testimony to us when the dr. leaned over and solicitously (if somewhat piously) said "Now, we don't know why things like this happen," and she laughed joyously and said "Because God wants them to!" Kind of set the poor man back.

Then I have a second cousin with Down's Syndrome. His parents, God bless 'em, never treated Jimmie Lee any different than any of their other kids. Jimmie Lee has grown up in a loving home, loved for who he is and is loving in return. His parents never questioned God or asked why, at least not in public ... tho' I'm sure "why" is a question that God is asked frequently by many people in many situations. The point is, they chose to trust and thank God, instead.

But I'd never met anyone who God had given the gift of Spina Bifida to, until it was a family in our church. Karen and Bob and the gift of Carson. Why do I say "the gift of Spina Bifida"? Because, as the song says, "God is too wise to be mistaken, God is too good to be unkind; when you don't understand, when you can't see His plan, when you can't trace His hand trust His heart." All children are a gift from God and some children God uses in a unique way to show His loving plan to others. Hence, a gift. Karen, Bob and Carson have the joy of being a unique part of God's plan.

God wants us to tell others about His love, but why would a person with a physical disability listen to someone like me, who is whole and healthy in body and mind (tho' my sister might argue the "whole in mind" part!)? Why would parents of a Special Needs child listen to a parent whose children are healthy when they try to tell them God loves them? But, they'll listen to parents who, themselves, have a Special Needs child. They'll listen one day when Carson, wearing braces and using a walker, tells them God loves them, no matter what, and is never wrong, no matter what.

When I heard that Carson had Spina Bifida, my first reaction was "I've heard of this, but I don't know what it is!" Karen didn't mind explaining to the ladies Sunday school, tho' I'm sure it was difficult as she was still trying to deal with it herself. But, Karen is nothing if not kind and generous of heart. So we learned about it right along with her. And, when Carson was born, our preacher simply requested we ladies restrain ourselves from trying to hold Carson until his parents ok'd it (he had immediate back surgery after birth). Carson's first months of life pretty much involved lots of kisses, cooing and women hovering over him. I'm sure he was a bit confused by it all. Once they were sure his back was fine, Carson began to be passed from church member to church member to be loved on. And, while it may have worried his Mom a bit to watch him move out of her arms, she allowed us to share in the joy of this precious Gift from God. No one has made any fuss about Carson’s being “different”, he’s just Carson. A gift from God to be loved and enjoyed.

Today, Carson has worked up to having to wear braces. I'm sure it's not easy, having to do these things to your child, put him in casts, put him through surgery, put him through pokings and proddings other kids don't have to face and then sticking him in braces. But, while willing to share and answer any questions put to them, Karen and Bob never complain. They make it look easy (which I'm sure it's not) and they smile all the time. And they set a wonderful example by thanking God continually for their precious gift.

I ask myself every now and then, how would I handle it if God gave me the gift of a Special Needs child? I have to admit, I don't know, He hasn't asked that of me. I pray it would be with the trust in Him I see in Karen and Bob. A trust, peace and joy they will transmit to their own Gift.

They choose to "trust His heart"

Go here to follow the Spina Bifida Kids blog