Saturday, December 31, 2011

CP Connection #2

7 What are your thoughts?
With a New year, we are looking forward to some new exciting things for Nina. After her 6 month post-rhizotomy follow up at Mayo Clinic, we have some goals and lots of work to do. Hopefully we will get Nina back in private therapy because she needs it in order to accomplish these goals.

1. Nina will walk 20 feet independently with braces and shoes in 4 weeks.
2. Nina will ambulate with forearm crutches with contact guard assistance for 25 feet in 4 weeks.
3. Nina will transition from sit to stand independently from bench (90/90) in 3 weeks.
4. Nina will increase hamstring length to 35 degree popliteal angle.

Pretty exciting to think about, although 4 weeks sounds a little intimidating, but we will work hard to accomplish these goals. It would be great if her next gait analysis is done with her crutches and independent walking.

Some new 'toys" for Nina include:

Glasses: Nina has a new prescription and new glasses. We stayed with blue, because she likes blue glasses. She has such a small face that finding frames is difficult. But I think these are pretty cute. If you know of some good deals on bifocal glasses for kids, please share!

 AFOs: Nina finally outgrew her first air of braces. These new friends of hers are pretty sweet, not only because they have butterflies, but do you see how they seem to be in an angle?

 There is a plastic piece that connects the bottom and the top of the AFOs. This little plastic piece provides quite a bit of resistance, so when Nina stands, she has to really push and make her legs straight. When she takes a step, her toes come up, being pushed by that plastic piece in the AFO. This is making her take steps and make contact with her heel first...for the most at. We have never seen heel-toe steps, all we saw were toe steps or straight down, but never heel first. These AFOs are awesome!

 There is a down side to these awesome AFO's. The extra little piece there that makes Nina step so well, also makes her braces very wide. So wide indeed, that we have not been able to find any shoes that go over them other than Crocs.

 So here is a video of Nina walking with her new AFO's. If you pay close attention you will see there is heel first contact in her steps, especially her left.

 Forearm crutches: And they are pink! Okay, they look salmon, but it is a shade of pink so we are happy. This was Nina the first time she held them. She was very nervous.

And here she is, practicing walking with the crutches. We have been told it takes 2-6 months to learn how to use them. I believe that!

Now it is your turn to join in the CP Connection. A few things to remember, make sure you add the CP connection button at the end of your post, that way we can all be "connected" in one place. Take some time to visit the other blogs and leave a comment if you are able to. You can click here and read the guidelines in how to connect.

Monday, December 19, 2011

Merry Christmas 2011

3 What are your thoughts?

May this Christmas season be filled with love and joy in your family. May you marvel at the gift of life we have through Jesus, and may you experience the abundance of His love. 

The Word became flesh and made his dwelling among us. We have seen his glory, the glory of the One and Only, who came from the Father, full of grace and truth.
John 1:14

See you all next year!

Sunday, December 18, 2011

A Perfect Day

4 What are your thoughts?
According to Ellie, yesterday was a perfect day...

First, we played in the snow. We only had a sprinkle but the girls were so excited to go outside. Nichole lasted all but 5 minutes, she doe snot like the snow. Ellie and I had a snow fight, and she loved it. Nina just had fun being in the snow.

Then Ellie had her hair cut. She was growing it out to be like Rapunzel's, but the tangles and the time to brush and do her hair were driving her crazy. She decided she wanted it short. So that is what we did.

 At home, we worked on making the yummiest treats for teachers and for our Awana party. 

And that was our perfect day.

Saturday, December 17, 2011

Initial Me a Gift...My Answers!

2 What are your thoughts?
Thanks for playing! This is what Andy and I came up with for your initials...

J. D. C. C.

Ellen: Just Daily Chocolate Cake
Andy: John Denver Christmas Carols

P. A. C.

Ellen: Plentiful Abundant Cash
Andy: Pork And Cheese

S. W. K.

Ellen: Seven White Kites
Andy: Snow White Kittens

B. Y. F.

Ellen: Beautiful Yellow Flowers
Andy: Big Yellow Frogs

P. E. N. S.

Ellen: Pretty Elegant New Shoes
Andy: Purple Elephant No Stripes
Andy: Pink Elephant No Socks

Now I am curious to know what you really want!

As for my MOPS group, turns out the lady did want New King Size Bed Sheets!
But what did I go with? Nobody Knows, Somebody Buy Something!

That was fun! Thanks!

Friday, December 16, 2011

The Mice Before Christmas

3 What are your thoughts?
Today, Andy and I got to watch the Kindergarten Christmas program at school. Ellie has been talking about it for weeks and singing the songs. It was an exciting day!

Ellie coming in with her class. She was a Reindeer, and had a line in the play, which she had memorized right away. She did a great job saying the words clearly into the microphone. It was a proud moment as a parent.

Nina was a mouse, and she did not have any lines. She did a great job getting herself in the chair all on her own, and her teacher helped her at the end get on the stage for the bow.

After the play, parents went to the classrooms and worked on a little project.

Ellie did fantastic, we were so proud of her at the play performance. In her classroom, seeing her interact with her friends is so much fun. She is friendly, she is kind, and she is so encouraging to her friends.

Nina, on the other hand...see that picture above? She is not smiling, just kind off...sitting. She almost seemed to be in a "trance." Kind of singing, but mostly sitting. Kind of doing the hand actions, but mostly sitting. At some point she was holding her friend's hand instead of following along. We are aware of how she "comes across" and that is hard. Mainly, because we know that what other parents saw today is not who Nina is. Her teachers know that is not who Nina is. Still, this morning she was just...awkward, and I know the awkwardness does not come from her Cerebral Palsy, but rather from her years spent at the orphanage. 

Most of the time, I do not notice that my girls are "different." I am used to it, it is normal to me. But then something like the school play comes along and you see just how different your child appears to be compared to the other children. And you know that the way they appear is what creates perceptions. It is not the same to see a typical child up in stage be extremely shy, it is an entire different thing to see a child with an obvious disability and medical equipment do the same. No, what people perceive is not accurate, but still, as a parent of a child with special needs, it can be discouraging.

In her classroom, she was fine; she is comfortable, she can be herself. That was so good to see. She was ready for pictures and smiles and talking to her friends. And the kids in her classroom like her, they really do. I am sure that any parents that saw her in the class realized she was just being very shy, that the sky is her limit, and that she is full of potential. And if they only knew where she came from, if ALL those parents knew what her past was like...they would be impressed. And you know what, they might have realized that her performance might have been the best one of them all...

...and Ellie's too of course!

Wednesday, December 14, 2011

Live With Us Forever?

15 What are your thoughts?

Funny how the mind works. When Nichole was born, some of the first questions I had about her future were things I never really questioned with Ellie.

-Will she ever get married?
-Will she have a job?
-Will she live with us forever?

Nichole brings such joy to our lives, that Andy and I joke about making her sign a contract where she promises to indeed live with us forever. I mean this girl touches our hearts in ways that blow us away! I have found her some nice boys that could make great husbands, and I have promised their moms I will take good care of their boys if our kids do end up falling in love.

Life with Nichole is beautiful. I thank God for this little rascal and for Him to entrust her to our family. Even Ellie tells us we don't get Nichole forever, when she is 18 (and you know, she will be a grownup then) she gets her. Ha!

To think we once assumed that her diagnosis of Down syndrome would bring limitations and hardships to our family...Ha! She has instead expanded us! Our hearts, our understanding, and our acceptance. She has brought a measure of love that comes directly from God. 

And she is fun! So much fun!

Here is a little glimpse. Nichole loves to make videos of the 2 of us, and this is a video we made a few weeks ago when she finally learned how to kiss!
 Nichole also has a thing for imitating Ellie, because she adored her big sister. Anything Ellie does Nichole is sure to follow. Ellie likes to sing with Nichole and they were showing me a song. Pardon the distraction of the camera.

Yes, we are smitten with this rascal, and sometimes even Nina cannot help but give in to Nichole's charm...sometimes. These 2 have a fierce competition going on, sound like sisters?

Linked to:
Women Living Well
Word Filled Wednesdays
Works for me Wednesdays
Winsome Wednesdays
No ordinary Blog Hop
Holy Experince

Tuesday, December 13, 2011

First Steps Take Courage

14 What are your thoughts?

There was no hesitation, no wobbly steps, no loosing balance. When Ellie began to walk, that is what she did. She walked.  She pushed herself to a stand in the middle of the kitchen and walked straight to me. A first that somehow defined precision.

Nichole, on the other hand, had muscle tone to conquer. Low muscle tone is one of the characteristics of Down syndrome, so we knew walking would take a little bit longer. Moreover, a lot of work; with a good measure of determination. Physical therapy became a regular part of our weekly routine. Nichole would dangle from a harness over a treadmill where we worked on walking. We did this for months. At first, she would only walk using a push toy. She was going to walk independently in her own time. Not ours and not her therapists. Her own time.

She was almost 2 years old, and I feared I would miss her first steps. We were heading to Ukraine to adopt our third daughter, and the thought of missing a milestone we had worked so hard to achieve felt devastating. A few weeks before getting on a plane to fly across the globe, Nichole stood; she took 3 wobbly, unbalanced, clumsy steps and fell down on her behind. I jumped, I cheered, I clapped, I cried. She clapped with me, pride exuding from her 23-month-old body. A first that somehow defined triumph.

Now I have a third child. One that makes me long to witness those first steps one more time. Nina’s body, tight from Cerebral Palsy, fights to find balance, coordination, and strength. Her Kindergarten friends run free in the playground, they move around without restrictions. Nina watches. I know she wants to walk. Fear and lack of self-confidence tie her down to her wheelchair. Her walker gives her some independence, but her stamina only lasts so long.

Nina wears resignation around her neck; she does not want to take it off.  She spent too long left alone in a crib. Without someone that would believe in her, in her potential. Her first English words were “I can’t!” And my heart breaks for her. The powerful message she received in a cold orphanage in Ukraine continues to whisper in her ear, “You can’t!” Nina believes it. However, I am not giving up on her.  I will be her legs if I have to, but I will teach her to use her own. We will cry, we will be frustrated, and we will get tired. But I am not giving up. I am her mother. Some day, she will walk independently. Some day, she will believe that her body can physically do it. It will be an emotional first. A first that somehow will define courage. 

Her first steps...

I wrote this essay for my writing class, before Nina started walking consistently. We still have a long ways to go, and we have to constantly remind her that she can do this. But overall, this little girl has taught me more about courage than anyone else has.  She is one incredible little girl, and I am lucky, so very lucky, to call her my own!

Linked to:
On your Heart Tuesday
Soli Deo Gloria
Teach Me Tuesdays
No Ordinary Blog Hop

My Daily Walk
We are That Family
Women Living Well

Sunday, December 11, 2011

Responding to Your Comments #3

4 What are your thoughts?
Blog Post: Initial Me a Gift

I will answer these on a separate blog post. If you have not left your initials, go ahead and play the game! If you cannot think of a gift with the initials I left, you can always just give me yours! You have no idea what I am talking about? Read the rules to the game!

Blog Post: What About Halloween?

Thank you all for your responses regarding Christians celebrating Halloween. Here are some of your thoughts, they speak for themselves...

My question is: What is the purpose of Halloween? Christmas used to be a pagan holiday but it has been redeemed by commemorating Jesus' birth. We can choose to emphasize the pagan side or the Christian side. Sometimes we go overboard on one side or the other but basically, we have a good reason to celebrate Christmas. Halloween, on the other hand has never been redeemed by Christian overtones. I have no problem with people trick or treating (although I do have a problem with all the candy!...:-) ) and the costumes (but I hate the horror emphasis). Each family has to decide what to promote and what to avoid.

I think evil is around us every day of the year and trying to attack us constantly, it is not a one day thing. So we should not worry too much about halloween, we should worry about how our relationship with God is, every day, every moment, so Evil doesn't take part of our lives.

Well we weren't Christians when we started having kids so we celebrated Halloween. Once we became Christians we continued to trick or treat because I didn't want my kids to associate becoming a Christian with taking their fun away. We have done lots of "Fall Festivals" at various churches and had a blast. We've also done trick or treating through the neighborhood. We have lots of good discussion about what is appropriate at Halloween and what isn't (costume choice, etc.) and we have a good time.

As a child, I always went trick or treating and I was raised in a Christian home. I see nothing wrong with a little harmless fun, but there is a lot of evil surrounding Halloween and a lot of evil things happen on that night. But then again, evil is around us and we can't "hole up" and not be a light to the world.

I went to Catholic school and we had the costumes, parades, and parties...and we also celebrate All Souls Day with mass.
You know, this actually surprised me!

Blog Post: A Hope and a Future (A Recycled Post)

We all have moments when we need to stop and think about what we have instead of focusing on what we do not.
Yes, we do! Why is it that all too often we focus on what we do not have?
Thank you all for your kind comments and your encouraging worlds on this post!

Blog Post: Christmas, Presents, Lights and All that Matters

I loved the comments, but you all left me wondering if you have posted about your favorite Christmas traditions or your favorite "things" about Christmas. So, if you have written about your Christmas traditions or moments, share your link!

Blog Post: Different Dream Parenting

Thank you for sharing your favorite books on special needs!

Blog Post: The 5th Season

I love the thought of Christmas as a 5th season! My daughter and I were just writing a song - a variation of The 12 Days of Christmas - and talking about how things like snowmen and sledding aren't really Christmas things. They are more like winter things.
Please do share the song!
And to "TheRogers" send me an e-mail, I would love to connect!

Blog Post: CP Connection #1

Make sure you keep checking this post! I decided to leave it open until CP connection #2 on January 1st. There are are a few new linked blogs so don't miss those!

Blog Post: Why Moms Need Friends

This is so true. It is good to take stock of the best times to get together for different friends so you can be intentional about catching up. Some of my friends it is best to do lunch together (either at home or out), others to do a cuppa at their place and others to go out for dessert once the kids are in bed. Once we start to accept that it is okay to have a playdate their are many different times and places for it to happen.
Thanks for the reminder - encouragement to make a playdate!
Great thoughts! I had to share :)

Anonymous said...
That cake looks really good, who serves that? Here is the answer to this comment...Click Here
Blog Post: Responding to Your Comments #2

Do you speak Spanish with your daughters? Just curious :-) I'm kind of interested in bilingualism and even studied some while at university.
Great question! When Ellie was little I did speak to her in Spanish. She had a pretty good vocabulary and understanding of simple things. She could name all her body parts, and knew the questions to what is your name, how old are you, and how are you. Basic stuff. When Nichole was born, I knew that speech would be an issue (because of her having Down syndrome) so I began to focus on sign language and English. I really stopped with any Spanish at all. Now, you have to remember, my husband does not speak Spanish, we do not live close to my family, and we really did not interact with anyone else that spoke Spanish. English really has become my first language, so speaking Spanish to my girls feels forced since I never really did it. Would I like for them to be bilingual? Absolutely! But more than anything I want Nichole to speak and be understood, that is my priority right now. And honestly, I don't know how to do both at this time. People giving me a hard time about it (si, ustedes familia, pero ni siquiera leen mi blog, asi que no me den lata!) doesn't help, I do a lot for my girls, we work really hard on so many other things, Spanish, right now, is in the back burner. But yes, I do hope that all 3 of them eventually speak Spanish!

Blog Post: Down Syndrome and Abortion

What a wonderful article! Several times a week I walk out of a store, or public place and ask myself, "Who are these 90+%?? Where are they??" I ask it because everywhere I go with my little girls (ages 3, 3 & 2, all with Ds - adopted from Ukraine with the help of Reece's Rainbow ;) they are met with smiles, sweet comments and downright adoration. From men and women. It makes it hard to get my shopping done, honestly. I'm not saying the 90+% aren't out there, it just seems like the vast majority of people who see my daughters, fall in love with them. And I admit, when I see a pregnant woman, I go out of my way to make sure and walk down her grocery aisle with the girls ;)I want the whole world to see what life with a child with Down syndrome is really like. If it were so scary, would I have THREE?? ;) They are the light of our life!! That being said, I never had a prenatal dx of Ds, so I really appreciate your candor in describing your personal experience, your fears and grief. Not having been in your shoes, I'm afraid I may not have been as understanding or compassionate as I should. I chose to parent children with Down syndrome, and didn't honestly understand how a mom could be sad about it. I appreciate the much-needed perspective.
You know, I see more and more people like your family that chose to adopt children with Down syndrome without having biological children with Ds. I love it! Yes, I do think the journey is a little bit different, and your perspective is absolutely beautiful! So for all of you that do not have kids with Down are missing out!

Blog Post: How Did You Find Us?

It was two years ago in Ukraine airport when God sent to me you Ellen and your daughter Nina.When I could not speak English yet and you did not speak Ukrainian but God sent to us man who was translator.I am thankful God that He brought us together that I met so beautiful women like you and I got a lots lessons from you.During this two years I can not forget you and sweet little girl Nina.Now I am very glad I can know more about you and your family.May God provides all your needs according His will.
This lady right here was our angel! It has been a rare treat to continue to be in touch with her! Let me tell you, God takes care of us through other people, and this lady is proof of that! I prayed for God to send me an angel, that I could not do it on my own, and it was this woman who quickly turned to me and helped me out...for 2 days! We are so thankful for you S!

Saturday, December 10, 2011

Initial Me a Gift...Let's Be Creative...A Game!

9 What are your thoughts?

Have you ever heard of "Initial Me a Gift"? My MOPS group does this every year and it sounds like it is a very fun gift exchange.

This is how it works:

On a piece of paper, you write down the initials of what you want the most for Christmas. So for example, maybe I want a diamond ring. So I write the initials: D.R.

Jane gets my name, so all she knows is that I want something with the initials D.R. 

Jane gets creative, and thinks that maybe I want a Dirty Rug, or a Delicious Raisin, or a Damp Rag.

You get the picture, you get creative and make it fun. The only rule is that you cannot spend more than $10

Help me out here, I need to get creative!
These are my initials: N. K. S. B. S.

Andy is creative this way, and this is what he came up with:
-New King Size Bed Sheets
-New Kitchen Spoon By Stewart (because we all love Martha's kitchen trinkets)
-New Knife Super Big Size

So, what can you come up with? help me out here! I need some fun ideas for my initials! 

And to make it even more fun, even if you cannot come up with something for my initials, why don't you tell me... what are your initials

Linked to:
Messy Monday

Winner of "Different Dream Parenting"

2 What are your thoughts?
I used to select the winner of the book. There were 13 comments. win!
I just need your e-mail so that I can get your address and send you the book.

I want to thank all of you that left a comment and shared your favorite books on special needs. I am really excited to read those and to keep learning, and to be inspired, by others that walk this same journey.

While having children with special needs can be hard, there are so many blessings we get to experience. I have seen shades of color I never knew were possible, and I would not want to do life any other way!

Next week, I will have another give-away, so check in because it is inspired by my daughter who has Cerebral Palsy...and walks on her toes...but any little girl might love it!

Friday, December 9, 2011

Oh the Season to be Sick!

2 What are your thoughts?
Let it be known, that winter in my home is usually defined by sinus infections. We all get them, but Nichole wins the prize hands down for the most, and worst sinus infections! At the beginning of the year, her sinus infection turned into periorbital cellulitis, so when she gets one, I don't mess around! And not that I ever overreact or anything close to that! Ha! In all seriousness though, I don't ever mess with Nichole's health. Little colds turn into big colds. Little coughs turn into croup.

Before Thanksgiving, Nichole had a sinus infection, so she was on antibiotics. She got better, but not without sharing with her sisters. Ellie has been fighting this for 3 weeks, so yesterday, she got antibiotics (the first of the year, not bad huh?) Nichole had been just fine. Well, this morning she had a runny nose, and eventually I got a call from school. She was lethargic, watery eyes, and a fever.

I picked her up at school.

Nichole: Mommy. Scawy! (makes sign for scary)
Mom: You are sick and it is scary?
Nichole: (Points at head) Scawy! (makes sign for scary) Sick! (makes sign for sick, changes fingers and signs scary again) Scawy!

School uses a forehead thermometer. Nichole and thermometers...well...they don't go together.

Mom: It was scary huh? Let's go home.
Nichole: Yes! Daddy!

And I think that made her feel all better...until we went to see the doctor. On the bright side, she is the sweetest thing every time we leave as she waves goodbye to the nurses. The sweetest thing.

At home, however, we are stuck with a bear! A sick bear!

Thursday, December 8, 2011

What About Halloween?

9 What are your thoughts?
I know, it is almost Christmas, so why would I bring up Halloween? This is old news!

A couple of days ago I wrote the blog post, "Christmas, Presents, Lights and All That Matters." Where I highlighted my favorite Christmas traditions and why they are meaningful to me. If you read that post, you will remember I mentioned that for a year I struggled with the Christmas tree and refused to have one because of some of the history that surrounds the Christmas tree (and really, the day we celebrate Jesus' birth). As I wrote that, Halloween came to mind---but I put it off my mind, and continued on with my Christmas theme.

To my surprise, one of the comments mentioned Halloween, and a friend of mine e-mailed me and asked for my thoughts on Halloween. Obviously, I am not the only Christian that has questioned the celebration of Halloween.

I will start by saying, that I am not sure how I feel about Halloween. With the girls in school, I knew I had to make a choice, at least for this year.This was the first year we did trick or treating, every year before now I avoided it!

I do believe that evil takes place during Halloween. I know that there are groups that celebrate this day as a spiritual holiday. We are told, in scripture, that our battle in this world takes part in the spiritual realm: there is good and there is evil, there are angels and there are demons. There is something very dark about this day. Just a search on google and you will see what I am talking about. Form that standpoint, I want nothing to do with Halloween, absolutely nothing!

So what about trick and treating or dressing up? Is it just a fun tradition that has nothing to do, and is separated from the "dark side"?

There are many churches that provide "Harvest Parties" and "Trunk and Treat" gatherings as an alternative for children. This is where I ask, alternative to what? Alternative to going from house to house asking for candy? An alternative to "not participate" in Halloween? Ultimately, isn't that also a way of participating in that day? So, is a church sponsored event that happens on Halloween different from having fun with your neighbors asking for candy? it makes no sense to me!

This year, our girls really wanted to go trick or treating. I had to ask myself, would there be any way in which our actions could be interpreted as evil? No. Do I think there are scary costumes that represent evil? Yes, absolutely, we stay away from those. In fact, there were a couple of houses that we skipped altogether because, well, they were scary.

The girls came home excited, and we really did have a wonderful family time. It was fun to see our neighbors and meet some other kids in our neighborhood and their families. It really was an innocent tradition.

So I would love to hear from you. What do you think about Halloween? Do you think it is all bad? Do you participate? Do you do church activities on that day? How did you come up with this decision?

Linked to:
Thought Provoking Thursday
Proverbs 31
Reflections of His Grace
Sister to Sister

Wednesday, December 7, 2011

A Hope and a Future (A Recycled Post)

8 What are your thoughts?
This story took place 2 years ago on Christmas day. I thought it would be nice to recycle this post and remember...

I sat up in bed and took a deep breath. The air cold and stale from the scent of vanilla air freshener, mixed with the cigarette smoke that oozed from the walls of the black and white one-room apartment. The dark brown curtains tried to conceal the light, yet the morning sun had managed to send a few gray rays to sneak around the folds of the heavy curtain.

A little girl pulled on my sleeve and made the sign “eat,” followed by a string of Ukrainian words. Then in English, she managed to say, “Banana.” It amazed me how for Nina the thought of food was enough to brighten her day, while all I could think of was that it had been six weeks since I had been home, and today would be an especially hard day. It was Christmas.

I carried Nina across the room and set her on the black leather couch that functioned as the living room. I pulled a black coffee table close to her, hence turning the living room into the dining room. Thankfully, there was a DVD player and I had brought some DVDs from home. I played “Signing Time!” for Nina often. She loved the music and I hoped that more signs would stick with her besides the sign for “eat” so that we could improve our communication.

While Nina watched the show, I proceeded to get breakfast ready for her: chamomile tea, dry cheerios and a banana. I set all three items on the small black table and she smiled. I knew we would do this again at least two more times that day. It was always the same, the only things I could get her to eat were bananas and dry cheerios. At least she was willing to drink different flavors of tea.

Once she was settled I turned on my computer ready to check my e-mail messages, it helped me to feel connected to my home. Nevertheless, there were few messages that morning. I realized I was angry that everyone else was happy enjoying their families, while I was stuck half way across the ocean. I settled to find Christmas music on-line and searched for Amy Grant’s rendition of “I Will Be Home for Christmas.” I wanted to sing along, especially the line, “I will be home for Christmas, but only in my dreams.”

After my little outburst of bitterness, I decided I needed to lighten up my mood and find a little Christmas cheer. I plugged in our tiny Christmas tree that was no taller than my forearm. The cleaning lady had brought it for us just two days before. I found a Christmas playlist on-line, and I cranked up the volume.

I sang and danced in the middle of the room while Nina watched intently. Then I scooped her up in my arms, weighing less than my two year old, yet twice her age. We danced and twirled to the music. It was a great ball to which we could wear our pajamas. The lights of the Christmas tree giving the perfect colorful glow to the small room.

However, Nina had lived most of her life with little attention, and after just a few songs, she was done with me, done celebrating Christmas. I set her on the white and black checkered floor and she crawled to the corner where she had a few toys. I knew she would be in her own world until she was ready to eat again.

I sulked the rest of the morning. I was engrossed in my own pity party and the little girl playing at my feet was oblivious as to how I felt. I began questioning if it was worth it. The adoption journey had me emotionally drained and it seemed as if Nina couldn’t have cared less about me. Moreover, back home, I had a husband who missed me and two little girls that cried for their mommy and could not wait to see her again. Every day being away from home was getting harder.

As I caressed my wounded thoughts, I looked over and watched Nina play with a box of crayons. She was dumping them out and then putting them neatly back in the box. For a second she looked back at me, made eye contact and smiled while waving the box. Then she continued with her activity, absorbed in her world. Yet, she had given me a glimpse and acknowledged me, if only for a second.

As simple as that moment was, it was the moment where my Christmas miracle happened. My eyes were opened to the beauty of the scene that took place before my eyes. I was not simply looking at a once orphan girl; I was looking at my child.

The journey of adoption had pushed us against a race of time trying to get our documents ready to get Nina. We had until her fourth birthday to rescue her, all because she had Cerebral Palsy. We knew that in her country she would die if we did not bring her home before that dreaded age where children with special needs are taken from their orphanages and sent to mental institutions. These are places where there is no hope and no future. The possibility of adoption is gone and most children die within a year after being tied down to cribs with little food and no medical intervention.

On that Christmas morning, I had chosen to be depressed wishing for what I did not have. Thankfully, I was reminded of what a wonderful day it was and how much I had to celebrate. I had a new daughter.

The little girl sitting by my feet would never have to go to an institution. She would never again know hunger or abuse. Nina had a family, with a mommy and daddy and two sisters. Her disability would not stop her, but rather she would be able to overcome her limitations with a family standing strong behind her, cheering her on. She would go to school, learn to read and write. There was so much in store for her and her life was full of potential. Nina had a hope and a future.

There were many sacrifices we had to make in order to rescue her and bring her home. Was it worth it? Absolutely!

“Nina” I called. She stopped playing and looked at me again. “Merry Christmas sweetheart” I said.

She didn’t understand what I was saying, so I did the best I could do at the time to show her love. I poured her a cup of more chamomile tea… with an extra spoonful of sugar.

Linked to:
Women Living Well
Word Filled Wednesday
Works For Me Wednesday
Winsome Wednesday
No Ordinary Blog Hop

Tuesday, December 6, 2011

Christmas, Presents, Lights, and All that Matters

7 What are your thoughts?

This year, Christmas has become a 5th Season. A visitor during winter that is not defined by cold, ice, gray, or short days--- but rather, a season of “warmth,” colors, lights, ribbons, peppermint mochas, and family.

I have heard the concerns--- the reason to celebrate Christmas is Christ; forget the presents, the decorations, the music, or the lights. Let’s have a birthday party for Jesus and go against the consumer frenzy that this celebration has become. I like the idea of having a birthday party for Jesus to teach children about the One we celebrate at Christmas, although He was not born on December 25. I get it, I understand, and I agree with the fact that this time should be a time where we pause and are awed, moved, and transformed by the fact that God became man. However, I find great enjoyment as I participate in all the other traditions, which I do believe to be traditions only, and not a religious observance. However, I find some of these quite meaningful.

       1. Christmas Trees and Ornaments

There was a time when I was against Christmas trees. No really, I refused to put up a Christmas tree one year convinced that it was an evil pagan celebration. However, even before that conviction, I was not burning the tree, worshiping the tree, or bringing it into my home as a sign of fertility. I will not tell you that I think about the tree as a symbol of life in Christ, although it is true that we have life through Him. No, to me, the tree is just a traditional decoration. The reason I like it, however, are the ornaments. I don’t know about your ornaments or your tree, but the ones on my tree tell a story. There are the ornaments that Ellie has made--- painted ceramic with its colors bleeding into each other--- little hands that were learning to paint. There is the ornament that Nina got on her first Christmas, when she finally had a family and was an orphan no more. There are the Ukrainian ornaments that speak so intimately about our adoption journey and our time in Ukraine. And there are the ornaments my grandmother gave to me as a wedding present---a little piece left from my Mexican homeland and family---the same wooden stars and wooden horses that I held in my hands as a child as I helped my grandmother decorate her tree. Every ornament  brings with it a flash of memories, and a prayer of thankfulness for God’s provision and presence in my life. 

2.       Lights

I love lights, inside and outside of homes. Lights that wrap around a Christmas tree, highlighting the ornaments, highlighting the blessings and the goodness that God has shined throughout my life. I am reminded that Jesus is the light of the world, who stepped down into darkness and opened my eyes. As I drive around and lights shine in people’s homes, I  pray for them. I pray that they will know the light of the world, that they will know Jesus.
3.       Presents
God gives good gifts. He has given me many. Material things will never compare to the gift of life He gives us. However, for me, presents are a tangible way in which I can show the people I love that I appreciate them, and that I am thankful they are part of my life. It is also wonderful time to teach my girls that a giving heart is indeed a gift to God. What can we give to bless others? 

4.       Music

I find Christmas music to be moving. It is through these songs that I reflect on the enormity of God becoming man. A God, so big, humbling Himself to walk among us, to be one of us. What a great God I serve!

5.       Scents

The scent of candles, cinnamon, evergreen, and peppermint are simply enjoyable. Ellie, my oldest, has a heightened sense of smell. To watch her breathing in those scents always brings a smile to my face.

6.       Food
The abundance of food, again, reminds me of God’s provision. A pastor’s family in a small church, we are not a picture of wealth. Yet, we have never lacked anything at all. All our needs have been provided, and as we feast during Christmas, we are reminded that God has given to us in plenty, and for that reason we give and we share.

7.       Family

Our family is spread far and wide, across States and across countries. It is during Christmas that we gather and spend time together. Often times, our memories  are from the moments that we share during Christmas.

8.       Nativities

I rarely think of Jesus as a baby. Quite honestly, it is hard for me to grasp and understand how a little baby was indeed the Savior of this world. Yet, He was. His entrance into this world was meek yet majestic at the same time. Meek, as his birth took place in a manger. Majestic, as a choir of angels appeared declaring that the Savior was born and a bright star led the way. That must have been a sight to see! Those shepherds surely witnessed a choir like no other!

9.       Mary

I often think about Mary during Christmas.  Therefore, it will be of no surprise to you that my favorite songs are “Mary Did You Know, “ and “Breath of Heaven.” I simply cannot imagine to be the one chosen. I do wonder if she ever had second thoughts about her qualifications, if she felt inadequate. As a mother, I can somehow relate to Mary, and the enormity of the great honor she was given.

10.   Jesus

 John 1:14 says “The Word became flesh and made his dwelling among us. We have seen his glory, the glory of the one and only Son, who came from the Father, full of grace and truth.” 
All I want is Jesus, all I need is Him. And it is my prayer, that in this season, you will know Him too. That your heart will become His dwelling place, bringing you life, life to the full.

Linked to:

Monday, December 5, 2011

Different Dream Parenting: Giveaway!

13 What are your thoughts?
Let me start by saying, that if you have a child with special needs, this is the book for you! Really! Jolene Philo has given all of us---parents of kids with special needs---an incredible gift through her book. Packed with resources, stories, encouragement, and prayers, this is a book that will bring you hope as you journey in the world of special needs, along with guides to IEP's, services, insurance issues, and everything else that parents of kids with special needs ever have to face!

When I got Jolene's book in the mail, I got a treasure! And I want to share that treasure with you! It is Christmas, so I want you to have the opportunity to have this book as a Christmas present from me! All you have to do is leave me a comment here, and tell me what is the best book on special needs that you have read! I will announce the winner on Saturday!

Besides, our family got to be a part of this book! You will get to hear about Nina and Nichole in these pages. I have had the pleasure of meeting Jolene in person and she is a lovely woman of God.

With that, I leave you with Jolene's words to you:

When our beautiful newborn boy was transferred to a regional hospital, my husband and I felt lost at sea. A few hours later, we learned that our baby required immediate surgery at a university hospital 750 miles away. Without it, he would die. That news threw us overboard. We longed for someone who could come alongside and pull us out of the water. A book to chart a map through unfamiliar waters and assure us of God’s presence.

But our son was born in 1982 when pediatric medicine was a relatively new field. Families like ours were hard to find. Parenting books hadn’t been written. The internet didn’t exist. Over the next twenty years, even after the surgeries and medical procedures that corrected our son’s condition were over, my search for parenting resources yielded scant results. Eventually, I sensed God nudging me to come alongside young parents lost at sea like we had been, to create a map they could follow.

Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs is that map. It’s a map for parents of kids living with medical special needs as well as conditions like Down Syndrome, juvenile diabetes, developmental delays, and autism, and those facing a terminal diagnosis. It guides parents by providing tools and resources they need to become effective advocates for their kids.

The book features interviews, advice, and resources from more than fifty families and two dozen professionals. With their help, the book addresses the situations parents face every day. Things I wish someone had told me, like:

      Asking questions after diagnosis.
      Dealing with insurance companies.
      Preparing a child for a hospital stay.
      Accessing financial resources and government monies.
      Accessing special education services.
      Determining optimum level of care.
      Mobilizing volunteers at home.
      Supporting the sibs.
      Preparing a child for death.
      Planning a funeral.
      Participating in community and church events.
      Creating a special needs trust for adult children with special needs.

In addition to practical advice, Different Dream Parenting tackles spiritual questions families are often afraid to ask. Questions about:

      God’s sovereignty
      Parental guilt
      Setting and maintaining spiritual priorities
      Grieving for children living with special needs
      Grieving the death of a child
      Passing faith on to children with special needs

Thirty day prayer guides in the appendices are for parents too exhausted to form their own prayers.

I remember what it’s like to be lost at sea, thrown overboard by an unexpected diagnosis, and drowning under a flood of caregiving demands. My goal is to put Different Dream Parenting into the hands of floundering parents so they have a map and know they’re not alone. To order the book, visit and click on the “buy the book” tab.

Thanks, Ellen, for this opportunity to guest blog at the Stumbo Family Story website and tell people about Different Dream Parenting

The contest is now closed, but I would still love to hear about your favorite books on special needs!



Related Posts with Thumbnails