Saturday, July 31, 2010

Milestones Can Be Miracles

0 What are your thoughts?
From the day Nichole was born with Down syndrome, we knew that milestones would take a little bit longer. She rolled over a little later, sat unassisted at 8 months, sat on her own from laying down after she was one year old, crawled at fifteen months and took her fist independent steps when she was 23 months old.

Although at times I had to keep myself from being discouraged, mostly we got to enjoy our baby a little bit longer. What is even more, the excitement we experienced over Nichole's accomplishment of each milestone was blissful! The celebration was so heartfelt that there were many times I found myself with tears of joy.

Walking was one of those milestones that was particularly meaningful. She was close to walking and we were getting closer to leaving for Ukraine to adopt Nina. The thought of missing Nichole's first steps was saddening to me. Not only had we worked hard, it was one of those things that as the mother of a child with Down syndrome you do not want to miss, it is a defining moment. Emma Bombeck's poem whispered in my heart, "You witness a miracle and you know it."

Thankfully I did get to see Nichole's first wobbly steps and short distance accomplishments. By the time I got back from Ukraine, she was really walking. I was thankful I had gotten to witness the miracle.

But now I have a child with Cerebral Palsy too. The miracle of walking is one I hope to experience yet one more time.

With Nichole we celebrated, we cheered, we cried. With Nina walking...I might cry like a baby! We will be so proud of her the day that we see her accomplish such a milestone. This will be Nina's little miracle, and we will be honored if we are her witnesses.

And we will celebrate, oh how we will celebrate! And in our celebration, I suppose that we will dance, and we will dance as if nobody was watching. Nichole and Nina have taught us to live life and not keep anything inside. You will all agree, that you give it your all when a milestone, for a particular child, becomes their miracle.

Thursday, July 29, 2010

Nichole and her Chickenpox

7 What are your thoughts?
I hope you took a good look at the first picture of Nichole. Not only because she is beautiful, but to remind you that she usually does look like that.

However, for the last couple of days, she has been looking like this.

My sweet baby girl has chickenpox and it is so sad. Andy and I look at her and we feel like crying for her. They say that children with Down syndrome have lower immune systems. in this case, I hope this is not true. Ellie is already on the mend and Nichole started getting spots two days after Ellie got hers. We are hoping that Nichole's worst day was today, and that tomorrow there are no more new spots!

(I am only posting pictures of Nichole because Ellie said she is too embarrassed to have me post her pictures here. Nichole, poor girl, has no say in this yet. Someday though, she might make me take these pictures down)

And one last look to remind you of the beautiful face waiting behind the poxes!

Wednesday, July 28, 2010

The Oprah Show

0 What are your thoughts?
October is National Down Syndrome Awareness Month. you might think October is still a ways away, but if you were a TV producer, you are probably looking at what will happen in October.

It is Oprah's last season, and for this reason, the Down syndrome community has come together to flood her inbox asking that she will do a show about Down syndrome.

We are sending submissions and hoping that she will get the message.

Here is my entry,

Almost three years ago, my world was shaken by the birth of my second daughter, Nichole. I knew from the moment I laid eyes on her that she had Down syndrome.

Fear. Tears. Questioning. I wondered if I would ever be able to breathe again, to live life. I felt like I had birthed a broken baby.

At a bookstore I found a book called “Gift: Mother’s Reflect on How Children With Down Syndrome Enrich Their Lives.” The beautiful picture of a baby with Down syndrome was inviting, so I dared open it. I quickly glanced at the foreword and read the first sentence, “Your life will have flashes of color you never knew possible.” I knelt down in the middle of the isle, tears streamed down my face as I held the book tight and close to my heart. All of a sudden, I was flooded with hope. I knew that in those pages I would find truth; the truth about having a baby with Down syndrome. The truth that I wish everyone would know, weather their child has this condition or not.

Because of Nichole, we have embarked in the most life altering journey of our lives. A journey that I would not have willingly chosen, but now that I live it, I would not trade it for anything in the world.

She has taught us more in her lifetime that we have learned from anyone else. She has showed us what love, joy, peace, kindness, and gentleness looks like. To find beauty in places that the world might label as less than perfect. And she opened our eyes to the world of special needs.

Because or Nichole, we adopted a little girl with Cerebral Palsy. When I see them playing together, I am reminded that it was because of Nichole that a once-orphan girl was saved. It was because of Nichole, that our adopted daughter now has a hope and a future.

October is National Down Syndrome Awareness month. Please consider honoring the wonderful individuals with Down syndrome that continue to teach us the mysteries of life that really matter.

And if you want to send your own submission to contribute to this cause, just click here.

Love and Helplessness

1 What are your thoughts?
We are discovering that in Nina's mind, she has to be helpless in order to be loved. It is a crazy concept, but we suspect that by being "helpless" she got attention, and therefore, felt loved.

From the time I took Nina out of the orphanage I have heard her say the words "I can't." First in Ukrainian, and now in English. We always thought that this was because she was told that all her life. However, these last couple of days we have began to wonder if the "I can't" and "You Can't" mentality was a vicious cycle encouraged by the workers, as well as Nina. Actually, we are wondering if Nina acted helpless in order to be held, in order to feel some human contact and affection.

Ellie and Nichole have chickenpox. Andy and I spend a lot of time holding them and giving them extra attention. Nina has quickly caught up on that, and she is distressed at the fact that she is not sick. She has a few mosquito bites and she insists on pointing them out, while occasionally lifting her shirt to see if her shingles have miraculously come back.

Since Nina got home, most "medical" attention and needs have centered around her. It has not been all fun, but I suppose it has been all about her. Having that attention shifted is rocking her world.

Here are a few examples of behaviors over the last couple of days.

-She is no longer climbing up and down the couch on her own. "I can't!" She says. She will even try to come up with all sorts of excuses to have us lift her from the couch and put her down. For example, "I have to go potty! Real bad!" "Okay Nina, come down the couch and I will take you." She pauses for a while, answers with some resignation, "No, I don't have to!"

-Her mosquito bites. If she sees them, she might all of a sudden cry...if we are in sight. If we quickly walk out the room, she stops, in a snap. She might crawl to where we are and try again.

-Last night, she was up 3 times in the middle of the night, crying. No reason, but somehow she was on the floor and of course I lifted her back in the bed and gave her a kiss. I think after the success the first time around, she did it again.

We keep telling Nina if she wants to be held that she can ask us. We even try to hold her and love on her. Somehow, it is seeing her sisters "weaker" that makes her feel she needs to be weaker as well in order to be loved.

It is sad to know that her concept of love has always been so conditional, and so tilted. It reminds me that she does not know love quite yet, she is learning. She is learning how to love and how to receive love. I am afraid that this is what would keep her from conquering some of her mobility issues. It makes me wonder if this is why deep down maybe she has no interest in walking.

Today, we have made a big deal out of all she can do. She is doing a little better, but still will not climb on the couch on her own.

These are just thoughts. I am reminded that we are getting to know each other, learning to live together. Mostly, we are learning to love.

Tuesday, July 27, 2010

Guest Blogger for Signing Time!

1 What are your thoughts?
Last December, while I was in Ukraine adopting Nina I met the Wetmores at a Ukrainian cafeteria. We were sharing our stories of adoption and I mentioned how Rachel Coleman (the creator of Signing Time!) had written a post that had inspired me to adopt Nina. Thom and Tami know Rachel personally, (they are real life friends with the number one celebrity at our house!) so they handed me Rachel's e-mail and told me I had to share my story with her. So I did!

I have posted about Rachel here, but this time, I got to do a guest blog post for her. So hop on over and enjoy, "Strong Enough for Nina."

First Shingles, Then Chickenpox

3 What are your thoughts?
Last summer there was an outbreak of chicken pox at Nina's orphanage. Nina was one of the many kids that got it. When we asked about the history of her vaccinations, the doctor joked about how no kids had the chickenpox vaccine, instead they all had it the summer before.

Three weeks ago, Nina had shingles.

If you don't want to click on the link, here is a little expert from that site, "Shingles occurs when the virus that causes chickenpox starts up again in your body. After you get better from chickenpox, the virus "sleeps" (is dormant) in your nerve roots. In some people, it stays dormant forever. In others, the virus "wakes up" when disease, stress, or aging weakens the immune system. It is not clear why this happens. But after the virus becomes active again, it can only cause shingles, not chickenpox."

You cannot get shingles from shingles. However, you can get chickenpox from shingles (If you have never had it before.)

Ellie has chickenpox. She is covered head to toe. I would post a picture except she is really embarrassed about it and does not want anyone to see her. Her first spots appeared on Saturday, we were not sure it actually was chickenpox. By Sunday we were sure it was shingles, and yesterday we watched her body just get covered. It really felt like we were watching a fast forward tape as we saw the spots appear.

And let me just say, it is no fun to have chickenpox when you are camping!

Today Nichole has a fever...guess she will join her sister with the spots.

Saturday, July 17, 2010

Escape Artist

5 What are your thoughts?
If you have small children you might read the title of this post and think "I know what you are talking about." However, if you have a child with Down might be right along with me trying to figure out what to do with your little Houdini.

Nichole is a runner. If there is open space before her, she will take off. I don't think she has any place in mind to go to, she just likes to go. We have even tried those cute little backpacks with a leash but she gets so mad about wearing them that it is better to just hold her.

The problem with holding Nichole (holding her in our arms or holding her hand) is that she has a superpower. Her super ability is what I call "noodling." It is best described by saying that all of her limbs can and will be transformed into a wet noodle and she escapes anyone's grasp!

Once Nichole noodles herself, she is gone, she takes off! Lately, she will try to the best of her ability to find "outside" and take off, and she will use "noodling" if she has to.

We are currently in Montana visiting Andy's family. Just a few days ago my mother and I were in the basement and she was helping me spray the girl's bed (night time accident.) We were in the room...I don't know, maybe 3 minutes? Nichole was dancing and singing to barbie princess and he Pauper but I realized I could not hear her anymore. I went to the family room and she was not there. I ran up the stairs hoping to find her in the living room or doing play-doh with her sisters...not there.

"Have you seen Nichole?" I asked Ellie while looking outside the window.

Right OUTSIDE Nichole was climbing down the curb and taking off running down the street! I am not a runner, but oh boy did I run fast! Yelling, "NOOOOOO!!! NICHOLE STOP!!!!!"

She saw me, but it did not face her. Oh did she get in trouble! She cried when she realized how scared I was, and I was scared, what if I had not checked on her? what if she had not been in view as I looked outside the window?

My little escape artist, one more nickname to add to the many she has had...

Saturday, July 10, 2010

Six Months Home

6 What are your thoughts?
It is hard to believe, but Nina has been with us for six months already. Six months...that is half a year. It is even longer than the time she was inside her biological mother. If feels like she has been with us for a while, yet, our Ukrainian adventure feels like it just happened yesterday. Even now as Andy and I recall all that took place during those seven weeks that our family was separated, we find ourselves being able to feel the raw emotions that we talk about.

It seems like our girls are adjusted to being sisters. Some days more than others. The sibling rivalry increases as Nina is able to communicate better, as well as the sweet moments of play and interaction between the three girls. And every night the girls give each other hugs and kisses.

Nina is doing incredibly well with her language acquisition. She does have dysarthria, which makes it hard to understand her at times. Mostly, Andy, Ellie, Nichole and I understand what she is saying, while others find it a bit more difficult. The crazy thing is that even people that have known us for a while seem to think twice about which little girl with special needs in our family was adopted. I suppose Nina really does look like a Stumbo, while Nichole has the Down syndrome characteristics that might throw people off at first. However, Nichole looks a lot like me. The resemblance has led me to the conclusion that by looking at Nichole I know exactly what I would look like if I had Down syndrome. A conclusion that makes Andy laugh at me while patting my back. I am still trying to decide what that means.

Nina's physical abilities are pretty much the same. We do feel confident that she will walk someday, but this might take a couple of years. Botox has been phenomenal for her braces, and her heels do come closer to the ground. However, braces or no braces, she is used to walking on her toes and we feel like we are hitting the wall when it comes to seeing real progress.

With Nina's increases language and communication, we have seen an increase of tantrums. She also likes to talk back and whines...just to get attention. This is clearly a behavior that worked for her at the orphanage, and we are trying to break it.

On the other hand, it seems like her tantrums are back to those I saw when I first got Nina. Shaking her body, scratching her face, and banging her head against the floor (very disturbing institutionalized behavior.) As she is able to communicate more, we have wondered if she is frustrated that what worked at the orphanage to get her way is not working here, and this is her way to show it.

A while back I blogged about author Jolene Philo and her book "A Different Dream for My Child." In her book she mentions post traumatic stress disorder in children. I have had the privilege to meet Jolene and talk to her about Nina. I do think that Nina exemplifies behavior that is consistent with post traumatic stress.

On a positive note, Nina seems to be gaining weight. Hooray! She has put on 2 pounds. She is also a very sweet little girl and she is always wanting to help and be a "big girl." She often tells us that she loves us and blows kisses to us from afar. And since sweet does not seem enough to describe her, I think I will tell you she is like "candy."

Nina's favorite color is yellow and she has started to play imagination games. Yes friends, she has finally reached this stage of development making her sisters quite happy. And Ellie finally has a playmate to entice with Barbies and Polly Pockets. Nichole is more into the relational games and she likes to play doctor or mommy; games that are played by all three girls. I love it!

Nina is almost potty trained. She wear underwear all day and we use pull ups at night and during nap time. We also recently got the Potty Stool and she is able to get on the toilet on her own. And although she still needs help, it is amazing what a sense of independence and accomplishment this has given her. What is great, is that this has been a great little stool for Nichole too and Nichole has even had a few success moments that are greatly rewarded by giving her toilet paper. Oh the joys of being able to wipe yourself...ahem...actually, with Nichole the joy is to drop the toilet paper in the toilet bowl, there is now wiping involved in the process.

As for Ellie, she continues to craft away and be the greatest big sister. She is so helpful. And now that she loves headbands, she can even do her own hair! It makes life easier for me, but she is especially proud of herself for doing so much on her own. And just for the record, she wants to be an artist ballerina when she grows up.

And here is Nina showing you her greatest accomplishment, standing on her own against the couch.

And here she is showing you the haircut she gave herself.

Wednesday, July 7, 2010 if nobody was watching

1 What are your thoughts?
I was a ballerina growing up, I have a degree to teach ballet, jazz, and tap. I thought I would end up going to England and dancing for a dance company there. However, I wonder sometimes if God gave me a passion for dance for who I have become now...a mother. And not just any mom, but a mom of girls with special needs.

Dance, dance as if nobody was watching. Somehow this little phrase speaks to my heart and my head is spinning thinking of all the possibilities.

Saturday, July 3, 2010

Excuse Me...That Is Inappropriate

6 What are your thoughts?
Today our town had a parade to celebrate Independence Day. Nina was terrified as soon as it started and Nichole was overheated and crying. I helped Andy load the girls in the stroller and stayed behind with Ellie.

While I was walking back to be with Ellie, who was waiting with one of my friends, the Tae Kwan Do group was parading with different kicks, turns, and I "yahs!" What caught my attention was a young man with Cerebral Palsy being pushed in his wheelchair. He was kicking and "yahing" right along the rest of his friends. He was not as coordinated, his "yahing" was not as clear, but he was giving it his best.

I heard some laughing. Two people were laughing at him, imitating him, making fun of him.

I was not sure what to do, but I knew I could not just walk away. So instead I walked to them.

"Excuse me" I said and got them to look at me, "What you are doing is very inappropriate."

Their eyes got big, they stared back.

"I have a daughter with cerebral Palsy just like the man you are laughing at, " I continued, "it hurts when people do what you are doing."

Oh they assured me they were not making fun of that young man.

"Well, whoever you were laughing at, I do want you to know, that to see a young man like him" I said pointing at the karate kid kicking his leg, "is inspirational. There he is following and living out his dream regardless of his limitations, and he should inspire you too, because most of us do not have that kind of strength and determination to pursue our dreams. Remember, he is inspirational."

The man assured me he agreed with me, and that there are many people with disabilities able to do many things. I smiled at him and walked away. I was shaking.

I sat down next to Ellie and finally allowed myself to breath a little.

It is not always easy to speak up, I really could have just kept walking and let it go. However, who was going to stand up for that man? Who will stand up for Nina? For Nichole? I will.

And maybe, just maybe, these two people learned that it is not okay to make fun of someone that looks a little awkward, or that cannot walk or talk well. Maybe, just maybe, next tie they will find them to be inspirational.



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