Who Will Win Today? and CP Connection # 3

Who will win today? This is a question I started asking Nina. Is Nina going to win, or will Cerebral Palsy win?

It is like Nina is in a boxing match against her CP. She swings her little arms hoping to punch her CP, but sometimes CP comes at her with  a fierce vengeance that knocks her down.

Nina started walking with no braces, just her bare feet. This is really great progress, it means she is getting stronger and balancing better. Without her braces her left foot pops up and she walks on her toes, but she is walking, and that is always good! Actually, it is great!

The puzzling part is when she does great and the next day she just cannot do it. She gives up, she believes it is too hard, even if she has done it 10 times before. So, in an effort to try to encourage her, this is an example of a conversation we might have:

Me: Who is in charge of your body? Cerebral Palsy, or Nina?
Nina: I don't know.
Me: Can Cerebral Palsy walk?
Nina: No
Me: Can Nina walk?
Nina: Yes!
Me: So who wins, Cerebral Palsy or Nina?
Nina: Me! I can walk!
Me: Yes! And Cerebral Palsy cannot stop you from walking! It tries to stop you, but it can't! We are beating Cerebral palsy, we are winning! We are showing it who is the boss of you!
Nina: I am the boss of me!
Me: So every time Cerebral Palsy wants to stop you from doing something, you need to show it who the boss is!

I am not sure how this approach will work, but the more we can get her to take ownership of her abilities, the better and better she will do. We don't want CP to be something she sees as her "enemy" but we also do not want her to be beaten by her disability. She can do anything she sets her mind to, and slowly, we are making progress. So the last few days as Nina has been taking independent steps without her leg braces, it is encouraging to see that. Slowly, slowly, she is showing Cerebral Palsy who is the boss of her body!

I would love to hear from young adults and adults with Cerebral palsy. is this an okay approach? I do not want her to be resentful of her CP, but I want her to take ownership of her abilities. What would you advice?






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Linking up? Don't forget to link to a specific post and not your entire blog. If you visit the other blogs, maybe you can leave a comment and let them know you stopped by. And don't forget to add the blog button so you can link back here. You can always click HERE for a more detailed scoop.

Calling All Cerebral Palsy Bloggers February 1st

Tomorrow, February 1st, will be our third CP Connection. In an effort to connect our Cerebral Palsy community through blogging, we link up with a blog post the first day of every month.

Who links up?
Anyone that blogs about Cerebral Palsy. Do you have a child with CP? Are you an adult with CP? We would love to have you join in and share one of your blog posts with us!

What should I blog about?
It doesn't matter what your blog post is about, as long as it has something to do with Cerebral Palsy.


Do I need to write a new blog post every time there is a link up?
You can if you want, or you can link up any blog post you have written in the past.

What are the rules?
1. Write a blog post.
2. Add the "CP Connection" button at the end of your post (so that it links back to the other blogs and we are all together in one place) The button code is on the right side-bar. 
3. Link-up your post (not your blog site, but the specific post)
4. Visit the other blogs and if you have the time, leave a comment on their post.

HERE is a more detailed post with the scoop on how this works.

Hope to see you link up tomorrow and spread the word!

Will She?

The moment Nichole came out of me, I knew she had Down syndrome. Within seconds, a tide of questions inundated me as I pictured Nichole's future:

-Will she ever get married?

-Will she have a job?

-Will she live with us forever?

-Will she have friends?

-Will she go to college?

-Will she have hobbies?

-Will she play any sports?

-Will she learn how to play any instruments?

The thing is, those questions and thoughts never really crossed my mind when Ellie was born. At least not the same day she was born! Yet, with Nichole, those were the questions I was dealing with the same day of her birth. The expectations and the normal ways of life all of a sudden did not seem to apply. 

Funny how Nichole can grab a little guitar and show me  that she will do whatever she sets her mind to.

You wonder what my life can look like mom? Here is a little glimpse. Picture me at church leading people in worship, showing them what a pure hearts looks like before the Lord.

Okay, maybe Nichole is not thinking all of that, but she is showing us that we can dream big. This little girl is not going to let us limit her, because she has so much potential, so much to offer, so much to give!

So here she is, my little girl with Down syndrome giving me the best guitar concerts I have seen while she pretends. And who knows! Maybe some day, she will actually be helping her daddy lead worship!

Linked to:

A Handful of Heart

A Holy Experience

No Ordinary Blog Hop

On, In and Around Mondays

Responding to Your Comments # 5

Blog Post: What To Say/Not To Say When your Friend's Baby Has Down Syndrome

Bottom line is that most people mean well even if their responses are somewhat awkward. They'll become more informed over the coming years as they get to know our beautiful children who happen to have a spare chromosome.
You are absolutely right. Most people are trying to show support. This is why we are all learning together.

I'm not sure if you waded through all the comments on Aaron Shust's blog.
Yes I did. Actually, that was the reasons I decided this was a timely post.  Which such a recognized christian figure, and with so many people offering support, it was clear to me who had kids with Down syndrome and who didn't! Again, people are well meaning, but some things are hard to hear.

We were offered an abortion because my numbers were borderline. (20 years ago)I guess it was the law, but I was hurt and insulted!
It is sad that not much has changed. I do wish that there was a better understanding in the medical community about what Down syndrome is like besides the medical issues.

I grew up with a girl with Down Syndrome. We went to (public) school together most of our childhood. I took swimming lessons at her parents' pool and spent a lot of time there. I knew she was different in some ways, but we grew up together and that was a gift. I learned that it was okay - normal - to include her in everyday activities and that she had a lot to contribute.
That is exactly it, they have so much to contribute!

It's always hard to say the right things in awkward situations, but it helps when we can share our experiences with others. I struggled with infertility for almost 9 years and it was hurtful to get comments from friends and even family who meant well, but just didn't know any better.
What a great story to share! Would you consider doing a guest post for "These Broken Vases" about this topic?

I think so often our desire to say something, anything, wins out over just keeping our mouth shut! When my son was diagnosed with autism the comments left me absolutely speechless and heartbroken. I'm sorry; how devastating for you; special needs kids can do so much now, yesterday I saw a child with DS working at Walmart...I would rather hear someone talk about how God made these babies with a PURPOSE!
I love that word...purpose! God does indeed have a purpose for our special children! I am so thankful for how my daughter has changed my life!

Blog Post: These Broken vases: Finding Beauty In Unexpected Places

I just changed over to a new format and got my own domain. I get it!
Tell me more about getting your own domain. How did that go with your old blog posts? With your old links?
What is the best way to respond to comments? I could go on and on with questions! Ha!
I am learning more about blogging. Slowly but surely!

Don't forget, February 1st will be our next Cerebral palsy Connection link-up! So if you blog about Cerebral palsy, don't forget to stop by on Wednesday!

These Broken Vases: Finding Beauty In Unexpected Places

Were you looking for "Stumbo Family Story"? You are in the right place, this is it! There is just a new name and a new look. Let me tell you a little bit about this…

Why the change?

I took a writing class last Fall. A momoir class to be more specific. Wow! What an incredible learning process it was, not only from “learning the craft” but also for gaining perspective. Why do I write? Why do I blog? What is it that compels me to share my story with you? Why would you come here and read what I have to share? 

I do not have it all together. In fact, I have come to look at myself as broken. Not in a, “I am broken, what shall I do!” sort of way. But rather “I am broken, and God is putting me together.” It is the living out of Psalm 139:23-24

“Search me, O God, and know my heart; test me and know my anxious thoughts. See if there is any offensive way in me, and lead me in the way everlasting.”

As  a pastor’s wife, there was also something very powerful about taking a writing class with a group of women outside of my Christian circle. In this group, I found a level of honesty in the writing and sharing that it challenged me. Really challenged me.  My new friend Sara Lind wrote a post in her blog: Moments of Exhilaration, shortly after the class was over. This is an excerpt of what she said:

The truth is powerful.  And often uncomfortable.  Sometimes too uncomfortable. But you have to face those uncomfortable truths and you have to write them, both for your own sake and because you owe it to your reader.  And you have to tell the whole truth.  Because only half a truth isn’t really the truth at all.

If I tell you that being a mother sometimes makes me angry, but I don’t tell you that once at 3:00 a.m. I slammed the door so hard I broke the door jamb, or that one morning when she wouldn’t go back to sleep after 5:00 a.m. for weeks in a row, I ripped the curtain off the curtain rod, or that sometimes I have to dig my nails into my palm so hard it leaves marks, just to stop myself from doing something worse – if I don’t tell you those things I haven’t told you the truth.  And you might think: “ok, she gets angry, but I’m sure she doesn’t get as angry as I do.  I must be the only mom who ever feels this way.”  And then my attempt to connect with you might just leave you feeling more lonely than ever.

These uncomfortable truths are what draw people in, what make them want to hear more.  It’s what makes us feel like we’re not alone, in parenthood or in life.  As writers we need to tell those truths, more than anything else.  So I will, always, strive to tell the truth here.  It is, after all, why I write.

And this is why I want to write too.  I wrestled with Nichole’s diagnosis, I have struggled to find beauty in adoption, and I find it boring to be a stay-at-home mom many times, I have even shaken my fist at God in defiance, I have felt abandoned by Him. All that comes from places of brokenness. I am a pastor’s wife, but I am also a broken woman, allowing God to put the pieces back together into something beautiful.

If you have been reading this blog for some time now, you know that this is one of my favorite quotes:

"Christ is building his kingdom with the broken things of earth. People desire only the strong, successful, victorious, and unbroken things in life to build their kingdoms, but God is the God of the unsuccessful – the God of those who have failed. Heaven is being filled with earth’s broken lives, and there is no “bruised reed” (Isa. 42:3) that Christ cannot take and restore to a glorious place of blessing and beauty. He can take a life crushed by pain or sorrow and make it a harp whose music will be total praise. He can lift earth’s saddest failure up to heaven’s glory." J.R. Miller

 
What will you find? 

Here is the heart behind the new name:

These Broken Vases: Finding Beauty in Unexpected Places

When my second daughter was born with Down syndrome, she challenged what I viewed as perfect, worthy, important, and valuable in life.  I had received her as a broken baby, only to quickly recognize that I was the broken one. The treasures I have discovered along the way are not found in strength, performance, eloquence, character or confidence. They are found in brokenness, where beauty is found unexpectedly as a result of God’s love and compassion transforming my life. My life is like a broken vase and I offer the pieces to God, trusting that He will take them and use them regardless of my brokenness. 

As I write my story of life, marriage, parenting, special needs, and adoption, I present them to you as they are – broken vases – and share how I find beauty in unexpected places.

Winter Adrenaline!

Snowy roads quickly give way to winter adrenaline kicking in! Today, my right leg is still feeling the effects of yesterday's adventure...

We finally got snow around here. I use "finally" as a loose term because I am from Mexico, and my Latin blood will never be a fan of cold and of snow. I don't care if it is beautiful when it first falls, there are so many other beautiful things, like for example, cars without rust, no shoveling, no frostbite, no extra gear of boots and coats and scarfs and hats, no slippery roads, no puddles in your garage due to black dirty snow on your car, conservation of energy! I mean, it is really expensive to heat up your house during the winter without having to deal with the layer of ice that makes it even colder. Colder!

The following is my personal recount of yesterday's happenings as I attempted to drive up a snow-covered hill. This may be, or may not be, a dramatized version of the actual events that took place.

I left early from meeting with a friend to go pick up the girls, knowing it would take more time to drive through the snow.

"Hopefully I won't get stuck on that hill on my way to school!" I joked with her.

The roads were rough, the kind that you need to start slowing down a good distance before you really have to stop in fear of sliding. I approached the big hill, I could see it in the distance...

Oh boy, I better get some momentum going or I won't make it for real.

I hit the gas in anticipation of the climb.

I am going to make it.

A car backs out their driveway.

No! I am going to have to slow down!

Sure enough, the car, freshly joining the wintery mix of the road, is stuck! Their wheels are spinning, turning, spitting snow in all directions, barely moving. Stuck! As I begin to climb the hill, I have to slow down.

Come on, come on! You can do it, you can do it little car!

But the car is struggling, and I have to slow down to an almost stop. Little car is stuck, and on the side of the road, where it looks as if it was parked, another car is trying to get up the hill.

Finally, little car begins to slowly creep up. I see my chance return, I hit the gas.

Oh boy.

At this point, little car in front of me finally kicks it and takes off!

I hit the gas again, now we can move on. But wait...now my wheels are spinning, my wheels are spitting snow, I am stuck too!

Okay, here we go!
 
This is where the adrenaline kicks in, and please forgive me as I do have great imagination...

Come on van, come on! Let's go up the hill. We can do this together, come on!

I hit the gas with determination, pumping it, hoping it will eventually "kick it!" I am stuck! I consider moving to the side of the road and letting the black SUV get by me, as they seem perfectly in control of their car. But I am so stuck in the road my car will not go anywhere!

No need to panic Ellen, they understand, they can see you are in trouble.

Wheels are spinning, I am gaining ground mere inches at a time. Rocking, rocking, creeping up that hill.

Come on you big black bull (I am referring to the black SUV) give me a little nudge here, I won't mind, help me up the hill.

But he doesn't help me.


Okay then. Come on Jesus, send me your Angel AAA to push me up this hill!

I am pumping that gas, and I realize the adrenaline of the moment is making my leg shake because I am so tense! And I mean so tense!

Then I picture it, a couple of angels behind the van pushing me up the hill.

There we go, keep pushing, keep pushing, we can do this, we can do this!

I am pumping the gas, we are creeping up. We pass the car stuck on the side of the road with the spinning wheels.


When I am done here, send those angels back to help that guy.

We creep up, slowly.

Then the van kicks it, and we come unglued!

Thank you Jesus!

I get to the girl's school about 3 minutes early, but I am full of adrenaline still, feeling like I am shaking. I park in the teacher's parking lot because of Nina and because that is where the handicap spot is.

I jump out of my car with my scrapper, and start attacking the teacher's cars. The snow is piled high on those windshields and windows, but I got a little something extra pumping through me. In 3 minutes I clear 4 cars, then I see Nina and Ellie come out the door.

By the time we are home, I realize my right leg is sore and I feel like I got the workout of my life!

This winter adrenaline...I don't think Mexican girls know how to deal with it!

Photo Credit

Meet Anya: Another Adoption!

See this cute little girl? This is Anya! This precious princess is 4 years old and she is in Bulgaria. She has Down syndrome and is just a few months older than Nichole. Don't you just love her?

Oh yeah, by the way, we are not adopting her, our dear friends the Loraine's are! Ha! What, did you think I was talking about us? Well, I had to do something to get your attention!

The Loraine family adopted Nina's best friend from the orphanage in Ukraine. The connection that our daughters share brought our families together. Erin and I have been talking since before they began their journey to Ukraine and get Oksana. Last July ,we got to meet face-to-face for the first time and last Thanksgiving their family came over to spend a week with us. The Loraines have become dear friends of ours.

They are adopting again, and they just received an amazing matching grant through LifeSong for Orphans. The grant is for $4000, but they need to raise the other $4000 by March 13.

Here are the details of the grant:
100% of all donations go towards our grant unless paypal is used in which case 2-3 percent are taken out for fees. Donations are tax deductible and can be made by a check made out to Lifesong for Orphans with a memo that says "preference Loraine #2473 adoption" and sent to

Lifesong for Orphans
PO Box 40 / 202 N. Ford St
Gridley, IL 61744

Or donations can be made online through paypal at http://www.lifesongfororphans.org/donation.html with the same memo under "purpose" by the dollar amount.

You can visit their blog HERE.

If you can't give, you can pray!

Will you consider helping out our friends?