Thursday, March 31, 2011

Be a Part of Something Bigger!

0 What are your thoughts?

There are around 143 million orphans in the world today.

Every 2.2 seconds an orphan ages out of the system and are left in the streets. With no family to call their own, with no place to go.

Children with Down syndrome and other special needs are sent to institutions at age 4. Even pets in America have a better life!

Kirill, the little boy you see in the picture, is one of the 143 million orphan children. And the woman holding him? That is his mother, Tesney Davis. Tesney and her husband have been denied their request to adopt Kirill. And why? Because he has Down syndrome. The Hook family and the Moreno family are also in the same region, facing the same judge, and most likely the same answer. No.

In the Down syndrome community, adoption community, and Reece's Rainbow community, we have gathered around them in prayer, as we ask that God will change the judge's heart and say yes. It is heartbreaking to think that 3 different families might loose their children. Weather someone officially makes them a Davis, a Hook, or a Moreno, these 3 families will forever see these children as theirs. God gave them these children to love, and in their hearts, they are no different. So they are doing what all parents will do in order to save their child. They will appeal to the courts, they will try to get government and media involved. They will do whatever they can in order to get their children home...because that is what parents do. We do not give hope, we keep on going, and we try again and again if we have to.

And then I think about how lucky these 3 little children with Down syndrome are. They have someone fighting for them! They have someone that will stand up and challenge the brokenness of this world in order to bring their children home!

But... there are still 143 million orphans left.

Nobody is fighting for them

Nobody aches with love for them.

Nobody that is willing to challenge this broken world because they believe they are worth it.

Nobody to wipe their tears.

Nobody that will make them their own.

This is not just sad, this is not only heartbreaking...this is unacceptable!

Why are we standing on the sidelines! Why are we allowing these children to rot away in institutions and orphanages!

 Why are we not moved to action!

You don't have the money? Really? Is that what will keep you from saving a life? Is a child not worth more than a car? Is a child not worth a bank loan? Is your child, not worth any price you have to pay? Is the cost of adoption worth a life wasting away in a crib. Is it?

Are you afraid you will not love them as your own? Can you at least love them more than the sterile environment they will die in? Can you at least give some love. You don't think it will be fair to love them less compared to your biological children? Look at that picture, is that fair? Can you not give more than that? Sure, there will be bonding issues, sure there will be behaviors to deal with, but is it not worth it? What child is not worth fighting for?

They are worth the tears.

They are worth the frustration.

The love that grows from the trials of adoption, is a hard eearned love, and it is a love that will change you! It will expand your heart.

143 million orphans

What is your role to play?




Be a part of something bigger than yourself. Be a part of God's movement to save his children.

Pray for the Davis, Hook, and Moreno family.

Pray for the 143 million orphans.

Give to the families that are adopting, because money is not and should not be what keep anyone from adopting.

Go. If God leads, He provides. If you feel called to adopt, it is time to take action, it is time for you to go get your son, your daughter. Do not allow one more day to go by where your precious child has to spend a day lying in a crib, their days wasting away.

Our sweet Nina was one of those orphans, but she is home now, she is safe.

These are God's children, and He is looking to us, asking us, "Will you take one of my children?"

We are God's hands, we are God's legs, we are God in this world. So if we are not doing something about this, nobody will. Will you?

You call follow the Davis and Moreno blog, just click on their names.

You can visit Reece's Rainbow and learn more about adopting a child with Down syndrome and other special needs.

And you can follow Reece's Rainbow on twitter, because Patricia Heaton (Everybody Loves Raymond) is donating a dollar for very person that follows Reece's Rainbow on twitter. She gets it, she is making a difference with her public voice.

And please take the time to watch this video. Be moved.

Monday, March 28, 2011

What Did He Say?

9 What are your thoughts?
Today Nina and I had a full day at Mayo Clinic in preparation for her Selective Dorsal Rhizotomy. Her surgery is less than 3 weeks away. April 15th will be here before we know it!
To start the day, we met with the Physical and Occupational Therapists that will be working with her after her surgery and while we do intensive rehab work. They measured her range of motion and taped her walking with her braces and without them. Since they will be the ones to work with her after the surgery, it is important than they "feel" the before and after.

Next, we toured the rehab facility where Nina will be living for 3-5 weeks. She will have 3-4 hours of rehab work per day depending on how she is doing and how well she cooperates. This will be quite the time for our family, as we also have to pack up and get ready to move (more on a later post!)

We quickly met up with some friends at Mayo. Another little boy with power wheels!

After lunch, Nina got to take a pre-surgery class where she got to play with a doll and listen to the story of what will happen when she has her surgery. I think this was fantastic for Nina. I wish we had been informed of this option before she had her tonsils and adenoids out, and even before we did the last MRI.

During this class, Nina got to play with a stethoscope. She put it in her ears, and listened to her own heart. She was very quiet, and listened very intently. She listened, and she listened, and I could see in her face that a lot was taking place in her little mind. Eventually we had to ask her to stop so that we could continue with the role play and story.

"Did you listen to your heart Nina?" The teacher asked
"Yes, I did" Nina responded, "I could hear my heart... and I heard Jesus, I heard Jesus in my heart."

Both the teacher and I paused. Talk about a sweet sweet moment!

"Did he say something to you?" I asked
"Yes he did" Nina said
"And what did he say?"
"I love you Nina" She responded with a small whisper of her voice.

And I tried really hard to keep all the emotion in, because she is loved by Jesus, loved so deeply!"

"Well..." the teacher responded, "I think we just witnessed a religious moment right now"

I agreed it was a special moment, and I do wonder if Jesus does reveals some things to children, who have an open heart and ears to hear Him whisper "I love you."

After the class, we needed to pick up a script for Nina's prescription (medicine she needs to take for her rhizotomy). And wouldn't you know it, I saw a little boy with beautiful almond shaped eyes sitting on the floor. Of course I was immediately drawn to him, and his mom and I quickly began talking, because you know, the extra 21st chromosome brings us together. It is an extra family, and we have an instant, powerful bond that brings us together. Although Nichole was not there, I showed her off by pulling out her picture form my purse.

But that is not all! Little J was there along with one more friend! So I got to meet 2 beautiful little boys with Down syndrome and their mamas! And I liked them all right away! It doesn't take long to exchange e-mails and phone numbers when that extra chromosome shows up.

It also turns out, Nichole is not the only rascal out there. Now I am wondering if rascal activities are common in Down syndrome, for it cannot be coincidence that the nickname is the same!

Finally, after waiting for an hour for the prescription, we came back home.

Wednesday, March 23, 2011

Mothering and Down Syndrome

2 What are your thoughts?
Nichole at 7 months little angel!

I came across this quote recently thanks to my friend Cary. I loved it, and in light of my last post about how Nichole has changed me, I thought it was timely. And I agree, Nichole is My Teacher of Life.

“Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It’s about understanding that she is exactly the person she is supposed to be. And that, if you’re lucky, she just might be the teacher who turns you into the person you are supposed to be.” ~The Water Giver

Monday, March 21, 2011

Down Syndrome Has Changed Me

2 What are your thoughts?

Dear Nichole,

When you came into my life, your diagnosis of Down syndrome threatened to crush my heart. That tiny extra 21st chromosome seemed too powerful for me to stand up against. I cried constantly, and I feared our lives would be covered with limitations. I wanted to wake up and find that you were a "normal" baby, that Down syndrome was only a part of a bad dream. But it wasn't a dream. You almond shaped eyes looked straight at me. Then one day, I thought you were looking not just at me, but straight into me.

I don't know how to describe this to you, so I will do the best I can. It was as if I had been dreaming for most of my life, and then you came in and you woke me up. Love, joy, and peace became almost tangible. I felt as if my eyes had been opened to the real things that matter in this world. Maybe I simply had a "weak heart" and then you showed up ready to fix it.

Not only did you awaken something inside of me; you changed me. God, using you, a little baby girl with Down syndrome, to touch the places of my life that needed to allow Him in.

I look at you now, and  Down syndrome, although it does not define you, is something in you that I cherish. It is something that I celebrate. I would not change a thing about you. Every single chromosome you have is absolutely perfect! You are exactly how God intended you to be, He created your inmost being.

Today is World Down syndrome day. Thanks to you, I realize the significance of this day because I know that Down syndrome is something to be celebrated, something that we could all use a little bit more of. I wish I loved more like you, and that I gave my hugs as freely as you do. I wish I celebrated others with the same excitement you show. I am blessed to have you my sweet girl.

Happy day to you my little rascal, and thank you for making ours happy because you are you!

Sunday, March 20, 2011

World Down Syndrome Day

1 What are your thoughts?
The IDSC (International Down Syndrome Coalition for Life) has put out a beautiful montage to celebrate World Down Syndrome Day, which is always March 21. Why March 21? Because it is 3/21 and people with Down syndrome have 3 copies of their 21st chromosome :)

Take a close look, because you will see Nichole's sweet face in the montage, along with many of her sweet friends.

Friday, March 18, 2011

Look at These Wheels!

5 What are your thoughts?
Nina and I were up bright and early this morning and headed to Mayo once more. She had a sedated MRI in preparation for her rhizotomy. After that, we were able to meet with some of the Child-Life staff and they showed Nina the ICU where she will be staying for a couple of days before being moved to the regular pediatric floor. She got to bring home a doctor bag, a video, and her own doll with a hospital gown, Her doll has a Strawberry Shortcake one, and I am afraid she will be asking for a Strawberry one when she has to be there!

Early in the afternoon, she got fitted for her very own wheelchair! And she got to pick the color. Hers will be sparkly blue (it looks just like fairy dust!) The team of brother and sister were phenomenal! She has adopted 2 ids and also has adopted children with special needs! The Physical Therapist that works with them was so nice and I got to as her some more questions about the rhizotomy. Have I said before I love Mayo?

So here is what Nina's wheelchair will look like.

What is really incredible, is that they will have it ready before Nina's rhizotomy, which is only a month away!

The wonderful PT went to get a wheelchair for Nina, so that she could sit on one and see what it was like. Nina was excited to get on, and once she was sitting there, she started moving those wheels and making it go. She turned herself around, wheeled herself out of the room, and began going up and down the halls with the PT helping her figure out how to use it. The joy on her face made me fight tears. Here I had been fighting the idea of a wheelchair, thinking that a wheelchair would keep her from walking, yet what I saw was complete freedom as a little girl moved around on her own! I saw independence and a desire to be able to do even more!

So the PT said to us, "You know, there is no reason why you cannot borrow this chair until you get your own. Why don't you do that, so that by the time Nina gets her own, she will be very comfortable moving around with it."

Nina is enjoying the wheelchair, still learning how to use it, but loving the time she gets to spend figuring out.

Wednesday, March 16, 2011

Questions and Answers

0 What are your thoughts?
From Nina's Gait Analysis Post.

Is she putting much weight on her legs?
Yes, as much as she can. She has such high muscle tone that "contracting" is basically all her muscles are doing right now. When she walks holding on to our hand, she tires quickly, so she cannot do that long distance. But the fact that she is walking with a walker and moving her legs means that her legs and muscles are doing something right! Her walker allows her to last on her feet a little bit longer, mainly because she does carry her weight on her arms and legs, so it is not her legs doing all the work.
In the video without the braces in particular, it looks like she's putting almost all her weight onto the walker via her arms.
Yes she does, and she can get her feet moving pretty fast and then "cruises" with her feet help up. She loves it! It really seems to be a lot of fun!

If that's the case, it would suggest that she has good strength in her arms. I wonder if she could benefit from forearm or platform crutches?
I thought so too! But turns out crutches are not necessarily about arm strength! Nina does not have the strenght in her legs, the balance in her body, or the coordination to use crutches. There is a lot that goes into using them. A walker provides an entire "frame" of stability, which Nina needs, as opposed to only 2 points. Does that make sense?

Can she stand un-aided?
No, not at all.

I can imagine it's incredibly difficult for her to balance on those tippy toes, and bent knees! It's hard enough to learn how to walk as it is; adding the tippy toes and bent knees must make it incredibly difficult to balance.
Not only is it hard, she is terrified of falling down because her body "contracts" under pressure, and she cannot break the fall with her arms. So every time she tries to balance, if we don't catch her, she is sure to hit her head :(

And one last question: ultimately, is she going to go from the walker to independent walking or is there some intermediate step (like crutches or something that I'm not thinking of?)
Hmmm, good question. I am assuming that she will still use the walker at the beginning, and form there she will be like a baby, taking a couple of steps first. Once she is walking short distances, maybe she will get crutches (depending on her gait after surgery)
The reality for Nina is that she will most likely always have a wheelchair for long distances, but, on the other hand, she might surprise us and turn out to be a runner! Now wouldn't that be exciting!

From the Rifton Gait Trainer Post

Does it actually hold the child up in a standing position so that they can't sit down? We have a walker for our little girl, but she stops and crawls off all the time... She needs to stand at least an hour a day to work on strengthening her muscles and something that she had to stand up in would help.
The harness helped keep her upright, but it "carried" her too. Even if she did not put any weight on her legs, she could relax comfortably. Has your PT talked to you about a stander?

How about a little girl with Arthrogryposis from the same country as Nina?
Yes, for a little girl with arthrogryposis!  Nina's walker is for Sophie!

From Nina's Spastic Diplegia Post.

Is her extreme spasticity and lack of flexibility due, in part to her CP being ignored (more or less) for the first few years of life? In other words, say someone had been working with her intensively from day one. Is it likely that that would have resulted in an improved condition today? Or is it one of those issues that can only be significantly improved through surgeries and stretching over the course of years and decades?
Well, I asked our PT so that I could answer your question better informed! Yes, her overall condition would be a lot better. Meaning, she would be a lot more independent and mobile. Her muscles would be used to stretching. Who knows, she could even be walking on her toes. Maybe her gait would be a lot better, even following  surgery. However, the outcome would have been the same. Her muscle tone would still be very high, and we would still be looking at a rhizotomy as the best option for Nina.

Tuesday, March 15, 2011

Nina's Gait Analysis

5 What are your thoughts?
Today, Nina had a Gait Analysis done at Mayo Clinic. Now, have I said before that I love Mayo? Well, in case you did not know this, I really do love Mayo! But on to the gait analysis...

If you have never seen one of these, it is a very sweet deal to watch! You know "Gallum"? Well Gallum was made by using the exact same technology that is used for the gait analysis. Now how is that for cool! 

What is a gait analysis? It is a test done to gather as mush data as possible pertaining the "gait" of an individual (or the way one walks). How does the individual look when they walk? What are their muscles doing when the person walks? What is the range of movement? These are basic questions that a gait analysis will answer by simple observation, and some really, really, and I mean really sweet technology!

We walked into a large gym. In the middle, there was a wide "path" marked by purple tape. At the end of the path there was a pretty regular looking video camera. However, all around the gym, up high, nestled in some black poles, were these red lighted cameras. No matter where you stand in the purple path, those cameras can see your body from every single angle that you have (yes, even those that you might not like! There is no hiding problem areas in this gym!)

Next, Nina got her tone and range of motion measured. It took a while to do this, but it was very important to have the measurements done.

Then came the fun part, Nina got 8 special type of microphones on her legs. Okay, I am not sure what they are really called, but that is what they told Nina they were, and they told her her muscles were going to talk to her using those microphones. You know those fancy medical machines you have to be strapped on to when you are in labor? the ones that show a straight line until a contraction comes and then they spike up all over the place? Well, every microphone in Nina's legs had a corresponding line. Every time she moved her leg, the line spiked and made noise. Her muscles were talking! And, the exciting part, is that they were all talking! But some of them, were very quiet.

Third came the fun part. Nina got her "space stickers" on.

See the "backpack" she is wearing? This is where she carried the "information box" that came from her microphones.

Unfortunately Nina was too curious about the silver balls, so they ended up taping them down to make sure they would stay.

Now Nina, do you think you can walk with all those fancy balls attached to you? I think the tech told me that she had over 50 of those on her!

First Nina got to walk without her braces on. This was the part where the space gear was necessary for. You can see how high up she is on her toes, her knees are constantly hitting each other, and her feet are turned in. Also, her left side is much stronger than her right side.

We also put the braces on, and kept on the microphones. You will notice that with her braces on she bends her knees a little more to compensate for the stretch, and even then her heels are up high. Knees? About the same!

This is a still picture, but, at the end of the test, we got to watch the video of her gait test. It is quite interesting to see your kid as a stick figure, especially a stick figure that moves just like them! If you click on the image it will enlarge it and you will notice her heels are way up high, and her knees bent, and her posture really will need to be worked on.

And why is this for? This is all in preparation for Nina's rhizotomy. Doctors need to have all this information on her body so that they can go in having a pretty good idea of where the problem areas are!

Monday, March 14, 2011

Book Review: The Miracle of Mercy Land by River Jordan

0 What are your thoughts?
The Miracle of Mercy Land
River Jordan

What would happen if something mysterious and supernatural came to be in your possession? What if it was a book that had the ability to show you people's lives, including your own? Past, present, and future? What if you could see the doors open and close from the choices that were made and would be made? Would you be tempted to change the story? To make a different choice and walk through a new open door?

Mercy Land is a simple girl, but she has a "backbone full of worthy." She comes from the small community of Bittersweet creek, where her father is a traveling preacher, her mother is a God fearing woman, and her aunt has helped raise her with all the fiestiness she can muster. Mercy moves to Bay City, where she works for Doc Philips, an old man who runs the newspaper of Bay City. It is to Doc Philips that this book is entrusted to, and he soon calls on Mercy to help him find the reason why the book has been given to them. But Doc believes that he has found the reason the book has been given to him, and he believes it is his job to redeem Bay City from a choice that had been made a long time ago. A choice that affected someone from Mercy's past.

River Jordan is a wonderful storyteller. I liked that Mercy Land girl as soon as I met her, and Doc Philips is a man that I would like to meet some day. Mercy, a simple girl with a backbone full of worthy. And aren't we all, somehow simple? But full of worthy when we see ourselves for who God has made us to be? And wouldn't it be an honor if God entrusted us with something so precious because we have cared for others so deeply and made them feel important, just like Doc did throughout his life?

If you are looking for a great book to read, I highly recommend "The Miracle of Mercy Land."

If you click here, you can read the first chapter of the book.

I received this book for free from Waterbrook Multnomah Publishers in exchange for my honest review.

Need a Rifton Gait Trainer?

2 What are your thoughts?
Nina's first walker was the Rifton Gait Trainer. If you are familiar with gait trainers, this really is a wonderful set of wheels!

Here is the deal, we don't need this for Nina. She has a reverse walker that she uses very proficiently, and she will be getting a wheelchair in the near future. So for now, we have a brand new gait trainer in our basement collecting dust, and we are never going to use it.

We would love to find a family that could use it for their child. The only thing that would need to be covered is the shipping. Really, that is all. I know there is a little girl with CP there somewhere that would be filled with joy by taking those first steps!

Nina's walker, as you can see, is hot pink. We still have the instructions and the video. It is in brand new condition as I am not sure she even used it more than 10 times. It has a harness, leg straps and "chair."

Update: Nina's Gait Trainer has a new owner! Exciting that it will go to a little girl that shares the same birth country as Nina, as well as the joy of having a family!

Saturday, March 12, 2011

Cerebral Palsy: Nina's Spastic Diplegia

7 What are your thoughts?
Nina's Cerebral Palsy is called Spastic Diplegia. In simple terms, it means that Cerebral Palsy affects primarily her legs, (although her upper body is affected as well). Nina's left side is also much stronger than her right side.

Nina got her AFO's (leg braces) after being home for 4 months. We had to really stretch her feet and calfs in order to get her AFO's on. They stayed on for a short time, but she was so tight that her heel would begin to creep up regardless of the straps on the braces. When this happened, she was done with her AFO's, crying and asking for them to come off. It was very painful.

Her feet not staying in her AFO's is what led us to doing Botox on her calf muscles. Botox was our little "miracle" to get Nina's feet to stay in her braces. Although the Botox has certainly worn off from her calfs, we were able to "break in" the AFO's, and she can tolerate them for up to 4-5 hours a day.

But Nina's is really tight, and there really is no easy fix to her spasticity. If you look closely at the pictures bellow, you will see that although Nina is wearing her braces, her feet are not touching the ground (not even close!) and her knees are bent and turned inside. If she gets really tired, her knees touch and her feet are spread wide (and upside down V).

This following video will give you an idea oh what it is like for Nina to move around our house with her AFO's. I asked her to walk the length of the couch and you can see how much her knees are bent when she walks as well as the fact that she is still walking on her toes.

Nina had been wearing her braces all morning by the time I took these pictures and the video. You probably heard that she was complaining about it a little bit. So I took her braces off. You would think that after a few hours being stretched by her braces that her heels would be closer to the ground, but that is not the case. She is back on her toes as soon as the braces come off (although the left foot is not all the way up!)

So I asked Nina to walk for me one more time without her braces. She was being really silly, so there are 2 short videos.

Friday, March 11, 2011

Questions About the Rhizotomy

0 What are your thoughts?
The comments from my last post on Nina's coming Rhizotomy made me think that although I have shared about Nina's Cerebral Palsy, there are some aspects about her condition that are so common to us, that I forget they are not that common at all! So let me tell you a little bit more by answering your questions.

Does the surgery allow her to flex all her muscles so easily? Do people with CP have pain from the tight muscles as I would from a leg cramp or is it not painful? It looks so painful. Blessings to Nina and the rest of your family!

This surgery will not affect her actual muscles. This surgery deals with the nerves that are connected to the muscles. Basically, right now those nerves are not able to tell the muscles to relax, ones the nerves are "gone" then we can actually work on her muscles. It should mean that when we work on her muscles, they are able to move lot easier!

Yes, unfortunately there is pain with tight muscles. This how the Physical Therapist described it to me. Let's say you get a "knot" on a muscle (like your neck or back) it bothers you, and it even hurts, especially when you are trying to move. A knot can actually make life a little miserable. Now imagine having not one, but your muscles covered with "knots" and these are not going away. Sometimes you can manage the pain, but sometimes, it just feels like it hurts.

Within the last year I had a mate get the surgery done. He is doing all sorts of things now.

Thanks for sharing this, I love to hear success stories!

Oksana looks more like the "after" video but I'm sure it's because of her surgery. Her hamstrings are very tight though, hence the talk of botox.

There are different types of surgery. Oksana (Nina's best friend at the orphanage!) had an Orthopedic Surgery. Nina will be having Orthopedic Surgeries in the future, we will not be done after the rhizotomy. The difference is that the rhizotomy should cut down on the number of orthopedic surgeries Nina will need to have in the future. Nina has some bone deformities that will need to be addressed, but hopefully we will not have to do any tendon lengthening or muscle release.

Botox has worked wonderful for Nina. Unfortunately, it is not a permanent solution and Nina is so small (weight) that the amount of Botox we can do is minimal, therefore, we see minimal results (but we did see wonderful results and wish we could have used it more)

Wow! The surgery sounds so scary but the potential outcomes sound nothing short of a miracle!

Yes, it is very scary! If the surgeon made a mistake...I do not even want to think about it! Any damage to the spinal chord can be very damaging. We will be asking for prayer as Nina goes into this surgery. But we also agree it would be a miracle for Nina's body. How wonderful to see her released from some of her spasticity!

Oh my goodness. I looked at that link. I can't believe they can do that! I didn't realize she was in a lot of pain. I guess it's hard to know if she doesn't say anything?

It is pretty incredible to look at the link and read and see what they do, isn't it? And Mayo does the same type of Rhizotomy, so that is how Nina's would go. It helps you understand how wonderful this can be for her, while realizing the very significant risk.

I am not sure that Nina can judge the pain very accurately. After all, she has lived with it all her life. It does get worse during winter and we do see her body contracting into itself even more during these cold months. She complains more about her knees and about her feet and her braces. I think she will be able to "judge" the pain better when it is gone. Can she imagine it being gone? Does she know any different? Sadly, no.

Wednesday, March 9, 2011

Selective Dorsal Rhizotomy- Part 1

5 What are your thoughts?
Nina got to go to Mayo on Monday and we talked extensively about her having a Rhizotomy. Here is a link that explains with great detail what it is and what it does. I will share more about this on a later post, but for now, I wanted to share with you a before and after rhizotomy video I found.

Nina is a lot tighter than the child you will see, and I mean, a lot tighter. I put on all my weight on her feet so that I can get them to flex. Stretching her is really hard. Her leg...we have never seen it straight.

The video made me cry, just thinking that Nina might be able to get some relief from her spastic muscles does something to my heart. I easily forget how much pain she lives with from her spastic muscles, yet she very rarely complains.

Sunday, March 6, 2011

A Season of Lent

2 What are your thoughts?

Search me, O God, and know my heart;
test me and know my anxious thoughts.
Point out anything in me that offends you,
and lead me along the path of everlasting life.
Psalm 139:23-24

The season of Lent is fast approaching, and I find myself looking inside the deep places of my heart. I am one that is easily carried by the winds of the world, and the business of life blinds me to the cries of my soul. At times, I feel like I am only surviving, rather than thriving. Yet, I know that Jesus offers me a full life. A truth that I do not always live.

The mindless escape offered by this world entices me, and I indulge in it. It leaves me feeling just as empty and as needy as I did before looking for their fake comfort. There is no life found on a television show, a computer screen, or a bag of chips. If anything, these prevent me from being still, and knowing that God is all I need, and deep down, He is all I want.

The season of Lent is to be a season of self-examination, prayer, repentance, and re-commitment. Our sins cost Him death on the cross, they are not to be taken lightly, they are not to be diminished as simple bad habits. Lent can be a meaningful time that leads us to the celebration of Christ's Resurrection at Easter.

I want this season to be a time where God speaks truth into those deep places of my heart. A time where I hear His voice and allow His words to cover my being, to change me. A time where I allow God to search me, to know my heart. A time where I find those things that are offensive to the God that gave me life. I want to be transformed.

Last year, Andy and I celebrated Lent for the first time. It was meaningful. As a matter of fact, I believe that it is something I want to make a part of my life every year. This season has come to have a profound meaning in my heart and relationship with God.

I read my post from last year, and not much has changed on the things that I want to give up in order to create space in my life. So I will not bore you with that "list" on this post (but you will see me posting less often). Rather, I wanted to share my heart with you.

If you celebrate Lent, may this be a time where God speaks to you. If you have any special plans for this time, I would love to hear what those are.

Friday, March 4, 2011

Why Adopt a Child With Cerebral Palsy

3 What are your thoughts?
Why did you adopt a child with Cerebral Palsy?      
Why cerebral Palsy and not Down syndrome?
Why would you adopt another child with special needs since you already have one with Down syndrome, doesn't it make more sense to adopt a "normal" one?

These are questions that we have often heard. Sometimes, they are asked with a real desire to learn about our family, while other times I am not sure why people ask them. Either way, I am always happy to take the time and answer these questions. I actually love questions (in case you haven't figured that out!)

So I invited you to ask any questions you would have about Cerebral Palsy, Nina, or our adoption process. So tonight, I get to answer one of those questions.

How did you come to the conclusion to pick Ukraine and CP for your adoption?

Adoption had been in my heart for a long time. After learning of the fate of children with special needs in Eastern Europe and other countries, Andy and I knew that we would one day do something about it, we knew we would make one of those children our own. Looking at the faces of children on Reece's Rainbow was something I did periodically (and still do), but it came a day when the picture of a little girl stole our hearts, and we decided it was time to pursue her adoption.

I know it sounds pretty "superficial" to say that it was her face that made us choose, but it was. We did not know what her special need was, or where she was from. She just looked so much like my husband that it was impossible not look at her and know she was a Stumbo, that she belonged with us. We always talked about adopting another child with Down syndrome, and the fact that she had Cerebral palsy was very scary to me, I was not sure I could do it.

Andy and I spent time praying and we asked our close friends and our family to pray with us. It was during this time of prayer, that Rachel Coleman wrote her post, "Strong Enough To Be Your Mom" God used Rachel's words to challenge me. I crying like a baby after reading that post. God was asking me if I would be strong enough for Nina, and I knew that my answer was a "yes."

I wrote a blog post for Rachel, "Strong Enough For Nina" where I shared about our journey of finding and choosing Nina.

When we committed to adopt Nina, I started an Adoption Blog, where I continue to update some things that are relevant to adoption and Nina (because not everything about Nina has to do with adoption!)

I encourage you to click on the links and read some of those posts, especially the "Strong Enough" posts. And remember, I love comments, and I love questions!

Wednesday, March 2, 2011

Guest Blogger: Beautiful Side of Hectic

6 What are your thoughts?
I asked my friend Cheryl to be the first guest blogger and share her experience with Cerebral Palsy. Enjoy her story and make sure to visit her blog Beautiful Side of Hectic.

Um, Hello?? Is this thing on? Oh yes! You sir, in the back! Please sit down and I'll try not to bore you too much! I suppose I should state the obvious...If you're looking for Ellen, she's in a closet wondering just WHAT exactly I'm going to talk about. It's ok. I gave her cookies and water, she's all set.
My name is Cheryl and I blog at I enjoy long walks on the beach, candle lit dinners and... Oh. THAT introduction is not going to work here. I will be celebrating the first anniversary of my 29th birthday in May. I have a wonderful husband, Adam who has put up with me for 10 years and married for 5, although, I do see a lot more grey hair popping up, I'd like to blame that on the kids. Speaking of kids, I have 2. They are mostly cute, usually when they're sleeping, unless they're talking in their sleep.Lauren is my "typically developing" child who is 4 (although, sometimes Adam and I wonder if the right child was diagnosed. ;)). My other daughter, Jillian is 2.5 and as a result of a premature birth, Jillian has Spastic diplegia Cerebral Palsy.We also live happily ever after with our cat, Timbit.

Jillian was born on a warm, sunny September morning, 10 weeks early. She had a pretty decent NICU stay, mostly there to eat and grow. After 5 weeks in the NICU, we took Jillian home. Being 10 weeks early, we had to take into consideration that since she's not supposed to be BORN yet, she'll start making milestones a little later then "typically developing" children. Nothing really struck me as delayed until she was 6 months old. She wasn't really babbling, not attempting to crawl/sit/etc. and had some severe oral aversions in regards to eating solid foods.I brought this up with her pediatrician and he advised we would keep an eye on it. When Jillian passed her 6 month corrected birthday, it was evident she was behind. Thus began our completely insane schedule.

We started with the basics, PT/OT/early intervention. When Jillian was STILL not meeting milestones, her doctor ordered a sedated MRI. Jillian went through that procedure quite well and we didn't hear the results until October 22 of 2009. I was taking Jillian to a routine appointment (ironically to plot her development on a graph) when the doctor announced he had Jillian's MRI reports back and she was diagnosed with Spastic Diplegia CP. I guess I was a little shocked, even though this would be a REASON why Jillian was behind.The doctor then told me it was ok to grieve. I thought "what?! Grieve?! We still have 2 living children!" It wasn't until about 4-6 weeks later that I understood what he said.

The shock has warn off and now I'm finding myself researching a LOT about CP. I firmly believe that knowledge is power and I needed to submerge myself in knowledge. The only bad thing that annoys me a little bit is the wait and see attitude. I do appreciate it, but sometimes I find it frustrating that we don't have anything set in stone like when Jillian will take unassisted steps.

So, there's my life in a nutshell. As much as I feel like CP doesn't define Jillian or I, it's a huge key in our lives, in our families lives. Honestly, Jillian has taught me SO much about myself. Who knew there was so much strength, determination and love inside of me?

We Need a New R Word

1 What are your thoughts?
This is a short clip, about 30 seconds long, but it has a very powerful message. I have 2 daughters who are hurt and diminished by the word "retarded." But what they really need, is...

Today is spread the word to end the word day. So spread the word!



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