Monday, May 31, 2010

5 Months Home!

5 What are your thoughts?
Nina has been home for 5 months! I cannot believe how fast the time goes by, and the little girl that arrived in our home is not the same little girl today! All areas of development have improved and it is hard to believe that just a few months ago there was so much she could not do. Things that now she can do with great ease.

Right now Nina is all about family. I think she is putting together in her head how she belongs with us. Many times she makes sure to say everyone's name stressing out our family name. "Daddy Stumbo, Mommy Stumbo, Ellie Stumbo, Nichole Stumbo and Nina Stumbo. We are a family, a Stumbo family!"

One of our favorite things right now is that Nina often says to us, "I am a happy girl!" many times she says it while bouncing on her legs and clapping her hands. Sometimes, the statement catches us in the most unexpected times and the significance of it touches our hearts deeply. Like being held by daddy while watching a show, and all of a sudden she turns to him and with her sweet, soft voice she will say, "Daddy, I am a happy girl."

She also talks about loving her family (and yes, she even includes the fact that she loves Nina too.) Many times she will come into the rooms we are in just to say, "Mommy, I love you!" She blows a kiss and goes back to whatever she was doing before.

The significance of family. A little girl that knew nothing about the love of a family is not basking in it. Her life would be so different today had we not adopted her. Tied down in a crib, or if lucky, still at the orphanage, hanging on by the day.

But she is loved. She has a family. She belongs. She is a Stumbo.

Here is a little video I took of her the other day. We had just gotten a book that we are sending to the family that is adopting Nina's best friend from the orphanage. We made this book for the orphanage to have, so they can see a little bit about Nina's new life. In the book we included pictures of our time in Ukraine, of her favorite worker, as well as the doctor. At the beginning of the video, Nina was trying to say that she had looked at a book of pictures and that she had seen a picture of her and her worker. She is saying the worker's name.

Sunday, May 30, 2010

Adoption: Love Grows

1 What are your thoughts?

In February I wrote a post about adoption and falling in love. Loving Nina has not been the same as loving Ellie or Nichole. There is so much about Nina that we don't know, whereas there is not a thing about Ellie or Nichole that is a secret to us. We have always been there.

Nina has been with us for five months, but Nina and I go back before arriving home. We shared two weeks together as we were finalizing the adoption in Ukraine. One would think that those two weeks were wonderful as we were getting to know each other; the foundation of our relationship. Those weeks were indeed the foundation of our relationship, but they were not wonderful. Those two weeks were the toughest, most discouraging weeks in my mothering journey. Every night as I listened to 2 or 3 hours of constant crying I would think about the day, and the many ways in which I had felt rejected. I felt like a failure, a rejected failure, and we were trapped in a little apartment with no place to go.

I understand why Nina was having a hard time, but unless you have experienced this first hand, nothing can prepare you to how it feels to be rejected by the child you worked so hard and passionately to save. It doesn't matter how well you understand it in your head, the feelings will still cling heavy on your heart. Whenever there was a Russian or Ukrainian speaker around, Nina wanted nothing to do with me. The more time we had together, the more she rejected me, the more she cried for other people. Three times she asked other women to take her, that she wanted them to be their mommy and not me because she could not understand me. They were familiar, I was not. Again, although I understood her feelings, mine were crushed and I wanted to run to my girls, the ones I had not seen for seven weeks and wanted me.

Once home there was no Ukrainian or Russian around thank goodness! Many people would offer having "so and so" help us because they spoke Russian. Let me think about that for a second... No thank you!

But my relationship with Nina did not just suddenly change. When your heart has been deeply hurt, it takes time to heal. I found myself being less patient with Nina, expecting more, and getting frustrated easily. I felt guilty about that. One day as I was spending time with God, praying for my children I though about Nina. I started to cry and I went to her, held her and cried some more. I asked for her to forgive me for being impatient with her, for not being more gentle. I told her that I loved her and that she was mine. It was a beautiful moment.

Then surgery happened and Nina was thrown back into the same behaviors she was having during those 2 weeks in Ukraine. She cried constantly and would ask for the workers in her orphanage by name. She wanted nothing to do with me...once again. Emotionally I was depleted, I felt like I had nothing to give. I had just begun to get up and was knocked to the ground once more.

Then one night she woke up spitting blood and we were back for another surgery. She was air lifted and I had to drive hour and a half to get there. Even though it was hard to have them take her and for me to stay behind, I actually felt like I could take a deep breath.

As we were coming home for the second time from the hospital, I asked a nurse to be with Nina while I got our things ready to go. I wanted to cry, dreading to go home and face life with a child that would reject me once more. God knew what was needed, and He sent the Russian speaking lady. He sent her for Nina and for me, because He is a God that restores relationships, or in our case, creates new relationships.

As I look at my journey with Nina, this is the one most significant moment we have had. This was the day that Nina chose me for the first time in her life, this was the moment that Nina realized she belonged in our family, and she wanted that. Nina wanted her mommy. And although at the moment I did not realize the significance of what took place, now I see it for what it was. It was a new birth.

(And if you did not read that post, click on the previous paragraph's highlighted words or click here)

Adding a new family members takes time to adjust. Weather it be a baby or an older child. A family has to learn to function with more people, it is not as simple as adding one more, but the family dynamics change and everyone has to adjust.

Nina is discovering what family is, and she is blossoming in her new understanding. She cherishes it.

Somehow, Nina is not just the little girl we are trying to include, she is a part of us now. We have six months to look back, and although not long, it is a history within our family. We know her favorite color and that she loves balloons. Although much of life is new to her, she finds comfort in us.

Before we met Nina, we had created a character of who we imagined her to be, one that pushed us to get her home. The love I have for Nina today, would have pushed me so much harder, because it is a love that has cost many tears, and therefore, great joy as it has grown.

Yes, she is my daughter, not born from my womb but from my heart. The love I felt for Ellie and Nichole as they were born is the love that has been born from me towards Nina. She is a without a doubt a"new baby" to me, to my heart.

She is mine.

Friday, May 28, 2010

The Great Outdoors!

1 What are your thoughts?
Today was a wonderful day. It was fun, and it was a success! We went to a park nearby that has a great play area for kids. There is also a McDonald's with a play place in the town, so we knew that if necessary we could make our exit with promise of play for Ellie and ice cream for the other two girls.

We started our day with Andy and Ellie running and well... I don't know! I was swinging Nina and Nichole. Nichole was not too happy to stay there for long, but we swung for a while!
Yes, this was Nichole saying, "Dowwwwn!"
The girls were definitely done swinging and wanted to be with Ellie. Somehow Andy convinced Nina that it was okay to crawl around in a shaded area. This is huge! Nina crawling outside (and with shorts!) it was great! She was crawling in some tunnels while Nichole was content crawling or sitting. This is a challenging place for Nichole, but the ultimate physical therapy place for her, so we were trying to push her as much as she would let us.
(Yes, that is Andy in the background, he was watching Nina)

Ellie just loved this place and there were some older kids from a school. The older girls said she was so cute with her sunglasses and necklace and it just made her day!

Nichole engaged in some rascal behavior by taking off. Actually she walked a lot! All over the playground, as well as trying to find...a sidewalk? A road? Not sure, but there is a lot of grass and she eventually turned around.
Then Nichole and I found Nina on her knees on rocks! Andy must have had a magic wand or something because her kneeling on rocks outside is not common! So Nina and Nichole played with the rocks for a long time while Andy chased Ellie all over the place. I couldn't see them, but I could hear the giggles and the growls.

Eventually we were all hot, sweaty, and hungry. We headed to McDonald's, why not! All three girls did wonderful, and Nina was so confident that she climbed the play structure there all on her own! Wow! Yeah, say it with me...Wow!!!
We got home with smiles. It was a wonderful day. The girls did great and it was enjoyable! Sometimes we leave places because we have to, usually someone has lost it, and yes, sometimes it is one of the parents! But today was a success, for all. Nina is getting over her fear of different grounds and this place was just perfect!
Maybe it is the reality that we are learning to function as a family of 5 and with 2 girls that need a little extra help. I don't know. What I do know, is that I felt like God was smiling down on us, enjoying the day with us, watching us with pleasure. And we were smiling right back!

Fun In The Sun...But Not Alone!

0 What are your thoughts?
The weather here has been absolutely beautiful! It makes for everyone in our family wanting to go play outside. We have an awesome swing set and it is nice to have the girls enjoy it. All of them love swinging.

Ellie has a lot of fun running, climbing, an so forth. Nina loves to swing but anything else outside results into her turning into a wooden board and collapsing wherever she is, regardless of what she is doing, and it is accompanied by crying. This results in Nina swinging, swinging...or swinging. Nichole loves to swing for a while, then she wants to get down and try to climb up the slide, forget the ladder, but she can't do it. She then gets frustrated and takes off. Where you ask? Anywhere that is not our yard! And no, we do not have a fence...we really need one, she is a runner!

I have tried taking the girls to play outside, in our backyard, all by myself. It is not a possibility for us. Nina's needs, along with Nichole turning into a rascal as soon as her lungs are filled with outside air, and Ellie wanting me to play with her is a recipe for disaster. Oh, and a frustrated mom that ends up carrying two girls as quickly as possible inside the house. One turns into a floppy noodle and is usually only attached to my "nearness" by the hand, I have to be fast before she is gone and running towards the street. Yeah, Nina holds on to my neck for dear life afraid I might just put her down on the floor to go chasing the little rascal.

I don't mean this is a negative way, it is just part of life, and until we get a fence, I cannot do this solo. As you can imagine, daddy coming home is exciting because there are two adults teaming up against the sort ones. We win, they win, we are all happy :)

Yesterday was one of those days!

Ellie does not get lots of attention here on the blog, but she sure gets lots of attention at home. I asked her the other day who was the sister that got the most attention. "Me mommy, of course I get the most attention!"
We really do try to make her feel special and not put to the side because of her sisters. So far, I think she still believes the world revolves around her.

And Nichole discovered she can climb our little slide all by herself, any way she wants! it kept her entertained for a while, until she thought it was time to take a run. Good thing I could chase her and practice "Stop." We are working on it.

Thursday, May 27, 2010

She Thinks She Can't

4 What are your thoughts?
From the very first day I took Nina out of the orphanage I realized that there was a message that Nina had been living for all her life. A message that had devastated her possibilities and her future, but even worse, a message that she believed and obeyed.

"I can't."

The words came so easily in Ukrainian, and she quickly learned them in English too.

Nina grew up believing this lie, because it was said by the people that she knew and the people that she trusted. Unfortunately, these people believed that lie too.

The first time I heard her say this was when she was trying to get down the couch in our little Ukrainian apartment. She got down en her tummy, laid flat against the coach and began to wail, "I can't, I can't!" There was nothing scary about where she physically found herself, hugging the coach with every inch of her body. But she was so scared of letting go thinking she would fall off the couch. I grabbed her legs and turned them around, then lowered them to the ground. Panic took on a persona like I had never seen before. Even though I was holding her, and helping her, she had never done something like that before. The reality is, I knew she could do it. Physically she was capable, it was not difficult for her at all...but she was sure she couldn't do it.

The couch became a battle. But after two weeks, she could get down the couch on her own and I would cheer, clap, and jump for her every time. "You did it Nina! you can do it!"

"Nina did it!" She would reply, the delight and surprise on her face were balm for some of those hard days we had together.

At home, she climbs down the couch...and UP the couch. She is resourceful, she has figured out that all she needs is to get one of the sofa cushions, it gives her just enough "push" so she can grab on and pull herself up, swinging those legs like a professional gymnast (this girl has some serious abs, talk about the six pack I wish I had!)

All along we have said to her that she can, and that she will. If we know she physically is able to, we stop helping, because she needs to learn that she can. She has conquered couches, stairs, and sitting like a pretzel. All things that she couldn't do before.

Still being outside she freezes with fear. Her fear looks much like terror. She wants to go down the slide, but in a matter of seconds, she freezes up, looses all her body control, and will fall over. Her body control is locked up in her mind and we better catch her. Sometimes, sitting in a chair, something in her says "I can't do this" and she will wail, and all of a sudden she is frozen up, falling over the chair, a kid size chair, banging her head on the floor because she cannot even stop a fall. It is all in her mind, the same chair she sits on all day long, all of a sudden is her biggest fear.

Walking is a big one. We have been told that physically she should be able to walk, we see her and we know this is true, however, her mind seems so closed to the possibility. "I can't!" She says with tears in her eyes. She wants to, but she believes that she can't.

We try any way we can to get her to experience her body, to learn to feel it. I try to teach her to dance. "Shake your booty Nina!" I say while we all dance, "I can't!" she says sadly, but after a few days, she held on tight to the table and said with delight, "I can do it, I can do it! Nina shake her booty!" While moving her hips from side to side.

What a lie she has lived with. Even as we take steps forward, I know the lie remains. Slowly we are speaking truth to her, slowly she will begin to believe in herself.

Besides, she gets to be a part of the family where there are 2 sisters with special needs. With a sister, mom, and dad that believe they can and that they will. So as the current of those that have low expectations tries to knock them down, they are learning, and they will be able to say, "Oh yeah? Well watch me do it!"

Nina's Walker

2 What are your thoughts?
Yesterday we finally got Nina's hot pink walker! It was ordered in February and it finally came. I think it is the reality of insurance covering such an expensive and such involved equipment. We are just thankful that we finally have it! Next month Nina will have botox injections on her legs and this will be another step forward towards mobility!

We knew that her walker would take up some room, but I did not expect it to be so big and so heavy. As soon as I brought it inside the house, I realized it was a tight fit as it got scratched up a little just going in through the door.

There is only one room where Nina can really use the walker, so we are thinking about different possibilities (like knocking down some walls, or building an addition, all which are a lot of money!)
For now, we are just making this be something fun!

We really talked about how great it would be to get her pink walker and she loves it! She will even stay in it for about 10 minutes! But right now when she wants down we put her down so that she just gets familiar with it. We are also trying to figure out the best "settings" for her, so slowly but surely we will work it out!

After much coaxing and prompting she finally let the death grip on it go and she stood up all by herself, without holding on to anything! This is a huge step on the right direction. Although the harness holds her up, she is learning some balance, but more important, she is learning to trust, and hopefully the message is getting in her heart, that she can do it!

Wednesday, May 26, 2010

Having Kids With Special Needs Can be Heavy...Literally!

3 What are your thoughts?
"It must be so hard to have kids with special needs."

These are words that I hear often. Actually, these are words that I would say to myself when I would see a mom with a child with special needs. Then I had Nichole.

It is not harder to parent Nichole. Really, having a child with Down syndrome does not make my parenting harder, more difficult, or less enjoyable. There are things that are different, but "different" and "harder" are not synonymous words. Sometimes things are harder with Nichole, and some other things are harder with Ellie, it has more to do with specific situations and many times personalities.

Then there is Nina with Cerebral Palsy. She is not harder to parent either. She is actually a very sweet little girl. She wants one thing and one thing only, and that is to please Andy and I.

Today, however, I discovered that there is something hard about parenting Nina. Wait a second, let me scratch that. What I discovered is that parenting Nina is heavy! We got her walker today and that thing really is heavy! Lugging it around requires some muscle! She is only 26 pounds thankfully, but she is going to grow and get heavier. When we graduate to a wheelchair as opposed to the stroller those things are heavy too!

So, I decided I am going to get ripped (yeah, if you know me go ahead and laugh, the mental picture of a muscular and strong me also sends me into a giggle frenzy.) Seriously, I have never been too motivated to exercise, but today I though, "I need some muscles here! And here...and here too"

Stronger, my kids will make me stronger. Take it figuratively or literally, both ways apply.

So in light of my post, I shall go and take a nap ;)

Thursday, May 20, 2010

What Would You Do?

1 What are your thoughts?
Last night on ABC the show "What Would You Do?" aired a segment that is pretty close to our family. A man with Down syndrome is bagging groceries while a costumer begins to verbally abuse him. Other costumers are watching, they are even being invited into the "conversation." So what did people do? Did people stand up for Josh, the man with Down syndrome? Or did they ignore the comments? Did they look away?

As Nichole's mom, and Nina's mom, this would be one of those times where I would speak up. I think I would be angry, but more than anything I would want them to know, to understand the power of their words. How devastating they are, and how they destroy lives! Not long ago I posted about what these words mean to our family. And I would want them to know that.
(Yes, I might have visions of my fist meeting their nose too, but thankfully I do understand that is not effective advocating...but I can dream!)

At the end of this segment they show a man that works at this grocery store, he does not have Down syndrome but does have an intellectual disability. The pain and sadness in his face and voice broke my heart, because he has experienced this kind of treatment and it hurts him so deeply.

So now it is your turn, tell me, what would you do?

And you can read my previous post on how these powerful words hurt, just click here.

Wednesday, May 19, 2010

Dancing With Angels

0 What are your thoughts?
Last month I posted about Crissie. A little girl adopted through Reece's Rainbow. Crissie had a serious heart condition, and a month ago, she went in for surgery covered in prayers.

Today Crissie's heart has been restored, she is healed in the presence of Jesus.

My heart aches for the family, and rejoices for Crissie.

You can click here to visit their blog.

Sunday, May 16, 2010

My Teacher of Life

6 What are your thoughts?

The pride I felt seeing my sister graduate from college yesterday made me dream of the day my girls graduate. I pictured all my girls on that day, decked with their caps and gowns. First Ellie, gracefully receiving her diploma, a beautiful young lady with a heart full of love and compassion, ready to live out her next dream and shine her light. I saw Nina, walking, yes walking to receive her diploma, with a father and mother sitting on the stands cheering her on and proud to call her our own. I saw Nichole too, and I had to try so hard not to cry.

I don’t know what will be of Nichole’s future. She is only 2 ½ but right now we do see college in her future (there are many programs available now a days for individuals with Down syndrome) It will be a day full of celebration, of empowerment, and of great accomplishment. My friend Leah wrote of her daughter Angela on her essay in Gifts 1, “The sky is her limit.” And so it is for Nichole.

But what if Nichole is not able to go to college? What if realistically her intellectual capabilities are not found in a classroom of higher education, even in programs targeted for others with intellectual disabilities? Will we have failed? Will she have failed? Will there be less value to her life?

She will never be a doctor, a lawyer, or a scientist. She will not be the greatest athlete or performer. She will not find the cure for cancer and she will certainly not be the next president. But then I look at Nichole and I am trapped in her eyes, unable to look away, unable to question anymore. The little girl that looks back at me is not broken, and she is not less than perfect. The value of her life is not found in all the things that she will never be, but in the things that she is. And at only 2 ½ her accomplishments are those that many of us seek to someday reach.

Nichole might not be a college graduate, but she is my teacher, my teacher of life. She has taught me what celebration looks and feels like. The power of cheering for others and the freedom of dance. She has taught me that a worthy performance is not found in a basketball court or a stage, but on a living room floor stacking blocks, and in saying “crackers please.” I have seen worship to God that is so honest and seems so pleasing, that it brings me to tears. I see it as Nichole tries to sing along at church, raising her arms to the God that gave life to her, or singing along and dancing to a video while she tries to sing along, “Let everything that breaths sings praises to the Lord, praise the Lord!”

She has partnered with God to work in my selfish heart. A heart that many times is so lost in this world and forgets that the standards I live for are not the ones set by people, but those set by God. She lives them, she teaches them to me.

I have seen joy in her, and wished that I could feel what she feels. It is so pure.

I have felt peace and love through her. At times when I am down, she instinctively knows it and comes to pat my back, and then she pulls me tight into a hug and offers a smile, maybe even asks if I need some crackers or chips too.

And every day she works harder than I usually do to master and accomplish new skills.

No diploma will ever be able to credit the value of Nichole’s life or the meaning of her accomplishments. She is already ahead of me in the things that really matter in life, and therefore she is my teacher and I her student.

And someday, maybe I will get to “graduate” and she will be the one cheering for me saying, “You did it mom! You did it!” And I hope that she is as proud of me as I am proud of her now.

Saturday, May 15, 2010

Improving Self Feeding Skills in a Toddler With Down Syndrome

5 What are your thoughts?
Many times children with Down syndrome have a little trouble with their fine motor skills. These fine motor skills are needed when it comes to using utensils and self feeding. It is actually pretty amazing all that is involved when it comes to self feeding once you break it out in small parts.

Nichole has pretty good fine motor skills, but still needs some help. part of the problem is that she gets easily distracted when she is eating. I would say that a good quantity of her meals usually ends up on her face, hair, and floor.

Recently I saw a blog post where a mom mentioned she would put a mirror in front of her child when the kid was eating. I wish I remembered where I saw this so I could give credit to whom credit is due.

Nichole seems to master many skills in front of mirrors. We have a large mirror in the kitchen where Nichole does most of her verbal play. She watches closely as she forms words and sounds, paying close attention to her lips and tongue. I knew right away that having a mirror in front of her could turn out to be the best thing in helping her master those skills needed in self feeding.

Our great friends from Early Intervention had the perfect mirror and they are letting us borrow it until we can get our own.

And let me just works! Nichole loves seeing herself in front of a mirror, and she is so aware of every move! She also talks to herself and strikes her "poses" to see how cute she is.

Although some food is still being wiped of her face and her hair still needs washing, it is amazing how much better she has done when she eats with the mirror in front of her. She is even wiping her own face when she sees she is dirty. She did before too, but now she can see when she if she needs to do more than one swipe to clean her face.

So happy eating everyone!

Monday, May 10, 2010

Not a Mistake: A Gifts 2 Essay

2 What are your thoughts?
Yesterday was Mother's day, but also a very special little girl's birthday. I thought in honor of her day and how God used her in my life, I would share the story I wrote for Gifts 2.

Not a Mistake

By Ellen Armendariz Stumbo

I was sitting in the family room watching TV and stroking my pregnant belly when my husband, Andy, walked into the room. Ten minutes before, he had answered a knock at the door. When I looked up and saw his dumbfounded expression, I knew instinctively that something was wrong.

"Jennifer has Down syndrome," he finally said.


"The doctor suspected Down syndrome and did some blood work. The test results came back positive."

I didn’t know what to say and I certainly didn’t know what to think. Jennifer, the newborn daughter of our dear friends, Bill and Kristin, had Down syndrome. Andy and I were also expecting a girl, and Kristin and I had dreams of our daughters growing up together and being best friends.

"But . . . are they sure?” I asked Andy. “I mean, how is this possible?" Just three weeks before, he and I had stood in the small hospital room holding that precious, beautiful baby, and gazed into her sweet face. There was plenty of joy and laughter as the brand new parents showed off their daughter. We were delighted. Our friends had a baby girl!

That scene replayed in my mind as I tried to understand this unimaginable tragedy our friends were facing. Jennifer was such a beautiful baby--was it really possible that she had Down syndrome? Wouldn’t such a baby be . . . well, not beautiful?

The diagnosis had to be a mistake, it just had to be a mistake. Why was this happening to our friends, and how would they ever survive? Were they devastated? Were they scared? Were they embarrassed to tell people? Would they still show off their daughter, take her out in public? How would other people look at them and their baby?

In my helplessness, I reminded myself that there were no better parents for a child with Down syndrome than Bill and Kristin. Both of them were full of love and acceptance. I was also comforted by the fact that they had friends who would walk this road with them, two close friends who also had a daughter with Down syndrome. But there was one question that I could not get out of my head: What if my baby girl was born with Down syndrome? Oh my God, I could never have a child with Down syndrome, please let my child be healthy.

The next time I saw Kristin, I felt uncomfortable. I didn’t know how to act around her. I asked how Jennifer was doing and what life was like with a brand new baby, and I told her how excited I was to have our baby girl born in a few months. I was not going to bring up Down syndrome. I am ashamed to say that I never once asked about my friend’s feelings. Andy, on the other hand, had multiple conversations with Bill. Bill shared that one of the most frustrating things for him was when people would say, “I’m sorry.” Bill and Kristin weren’t sorry and didn’t want others to feel sorry for them. When Andy told me this, I realized that I did feel sorry for them, and that my attitude needed to change. Jennifer would still be our daughter’s best friend, Down syndrome or not.

Our daughter Ellie was born in August, just three months after Jennifer. Often Ellie and Jennifer reached milestones like rolling, sitting, and crawling around the same time. My daughter was four months when she rolled over and Jennifer was seven months, the time when most “typical” children are sitting on their own. It never occurred to me that seeing this contrast might have been hard for Kristin. How consumed I was with my perfect baby and my perfect life!

When Jennifer was fifteen months old, Kristin took a part-time job and needed to find someone to take care of her daughter. I happily volunteered to have Jennifer come to our house. I was so excited, knowing it would be good for Ellie to have a playmate. Little did I know that Jennifer was coming to our house because I needed her.

Over the following months, Kristin and I became closer friends and she started sharing more of her thoughts and feelings about having a daughter with Down syndrome. I became better able to see things through her eyes and join in the celebration as her daughter reached milestones. We cheered when Jennifer was standing on her own, whooped when she was able to sign, and bragged about the simple words she was able to say. Most importantly, I got to see how beautiful life can be with a child who has an extra chromosome. Jennifer had Down syndrome, sure, but the diagnosis was such a small part of who she was. Jennifer was perfect, exactly how she was intended to be. And in only a few short months, I fell in love with her. That year, in our Christmas letter I wrote, “I love that little girl almost as much as if she was mine.” And I meant every word.

Shortly after the holidays, we decided to try for another baby. It did not take very long for me to get pregnant again, but for some reason it seemed to be a complicated pregnancy. During an ultrasound exam at nineteen weeks, I felt the need to ask if our baby’s heart was okay. The technician didn’t say much, other than confirming that four chambers were visible. A few minutes later, back in the examination room, my midwife said that they had found some fluid around the heart, and I needed to have a level II ultrasound. I walked out of the clinic crying that day. I felt utterly helpless as I shared the news with Andy over the phone. The next day we had to fly to Florida for a conference, and the ultrasound would have to wait a week. A week seemed like an eternity.

Our first night in Florida I woke up in the middle of the night with an unexplained and overwhelming sense that our baby was going to have Down syndrome. With a heavy heart I prayed, Not Down syndrome, Lord please! It’s okay for our friends but not for us. I locked myself in the bathroom and let the tears come. I was not like Bill and Kristin; I could never have a child with a disability. The delays, the therapies, and other people’s perceptions were too much for me to handle.

The next morning I was still very upset. “What if our baby has Down’s?” I asked Andy.

“Why do you ask that?” he replied, confused.

“I . . .” My voice broke as I struggled with my emotions. “I had a dream about it,” I finally said, as tears streamed down my face.

Andy was thoughtful for a while, then he reached out and held my hand, “If it comes to be, then we will walk down that road, and you and I know that we will not walk it alone.”

I fell into his arms and cried. He was right. Bill, Kristin, and Jennifer would walk with us every step of the way.

When we went to have the level II ultrasound, we were overjoyed to hear that the fluid around the baby’s heart was gone. The doctor said not to worry about anything, our baby girl was perfectly healthy and an amniocentesis would not be necessary. We felt relieved to know that everything was okay.

But then, two weeks later, we went to my regular prenatal checkup. “How are you guys feeling about the level II ultrasound?” my midwife asked.

“We feel great,” I responded.

She looked confused. “Didn’t they tell you?”

“All they told us is that the fluid around the heart is gone,” Andy replied.

The midwife paused, took a deep breath, and looked from Andy to me. The concern in her face threw me into panic. I feared she’d say those words that had only been spoken in the sharing of my dream. It was only a dream. It had to be only a dream.

“Your baby might have Down syndrome,” she finally said.

My heart sank. I swallowed hard and looked at Andy. It struck me that despite this news, his eyes were peaceful. The only thing I knew for sure was that this was our baby girl and we would love her, even if she had an extra chromosome. All I could muster in reply to the midwife was, “It will be okay if she does.”

As Andy and I drove home, we decided that since there was only a possibility of Down syndrome and not a definite diagnosis, we wouldn’t share this information with anyone except two people: Bill and Kristin. When we did, they helped us process our feelings and assured us that they would journey alongside us. Our close friends were becoming our family.

Nichole was born on October 2, 2007, after a smooth and quick labor and delivery. And yes, Nichole was born with Down syndrome. As soon as she was placed on my tummy, I thought she looks like Jennifer. Several nurses told us how lucky our daughter was, for they had never seen such love and acceptance from parents who had a baby diagnosed with Down syndrome. I had fooled them all. They didn’t know that when I looked at Nichole’s face, all I saw was Down syndrome. I couldn’t see my baby.

Back at home with Nichole, I was a depressed mess. My life had been destroyed and the shattered pieces lay scattered around me. My vision blurred from the constant tears; I couldn’t even begin to put together a fa├žade. I was in a deep and ugly hole, feeling as if warmth and light had vanished forever, and leaving me to slowly die inside. I prayed and I prayed that I would wake up from the nightmare to find out that I had a “normal” baby girl.

Exactly a week after Nichole was born, her doctor called to confirm her diagnosis: Trisomy 21. I called Andy and he came home from work early. We sat in the living room and I cried while we held each other. I thought I was ready to love a child with Down syndrome; I thought I would be able to handle it. Why was this happening to us? It had to be a mistake, it just had to be a mistake!

The doorbell rang. Andy opened the door wide and a beautiful and spunky little girl walked in, wearing one of her huge smiles. She waved both arms at us and said, “Hi!” It was Jennifer, and despite my great sadness, she had just made me smile.

Our friends stayed to visit for the evening. I couldn’t take my eyes off Jennifer that night. I couldn’t help but imagine our new life with a child with Down syndrome. And what I imagined was beautiful! I saw love, joy, and peace bundled in a baby. I saw great celebration of even the smallest of accomplishments. I imagined Nichole as a little girl running to me, offering a hug and a kiss, playing with her sister, and bringing laughter into our family. And that was only the beginning. My heart was pounding hard, fully engaged and overflowing with joyful dreams for the future. I was ready to embark on this new adventure.

By the end of the evening, I knew I could be done with my tears of sadness. As I looked into Jennifer’s eyes, I knew beyond any doubt that everything would be okay. That life with Nichole would be surprisingly rich in all aspects. That I had so much to look forward to.

Today, nineteen months later, I am even more convinced that Nichole is absolutely perfect. I would not have her any other way. Because of her, I have basked in love, joy, kindness, gentleness, peace, and goodness. Nothing about my daughter is a mistake. God does not make mistakes.

An Artist Among Us

3 What are your thoughts?
Take a good look at this water color picture. Amazing, isn't it? Ellie is only 4 and sometimes she makes my artistic abilities look like I was the little kid!

We were painting flowers and wouldn't you know it, mine ended up in the garbage, while hers will end up in a frame. I just love the colors and creativity!

Ellie had always been very artistic. She loves coloring, painting, drawing, sculpting, or crafting. I would lie if I didn't say that I love being able to do these things with her! I have an excuse to make some crafts and have fun! I am always looking for fun ideas that we can try.

I think this will always be a fun mother daughter memory. And I do look forward to having our home decorated by our talented artist.

Saturday, May 8, 2010

Mother's Day Montage

0 What are your thoughts?
Last year I wrote this post for Mother's Day. I was going to repost it, but instead you can click here and read it again.

Also my friend Gillian made this video montage in honor of Mother's Day.
Amazing how our children with special needs have brought us together. I have met wonderful mothers and women as we have walked this journey. Our children have blessed us in many ways, and these friendships are one of those blessings.

If you have a child with special needs...Happy Mother's day!

And Happy Mother's Day to all moms!

Answering Some Questions

0 What are your thoughts?
How is Nina doing?

She is doing very well! She rarely gets pain medication. She asks for it in the morning but only out of routine. I did give her some later today thinking she needed it, but that was it. Her scabs are coming off, and that makes me a little scared, however, her behavior is not of a child in pain. She even tells us her throat is fine and she wants peanuts and crackers!
Emotionally, she is doing better than ever. Whatever happened in her little heart after we had our encounter with the Russian speaking lady at the hospital was definitely from God!

Do you have any idea why it is that in some regions, you cannot adopt a child once he/she has been sent to the mental institution? I've seen this mentioned on many RR profiles and I thought perhaps you'd know, as I believe some regions of Ukraine use this policy. I've Googled this, but to no avail!

It depends on the institution. Ukraine, as a country is okay with children being adopted out of institutions (and some are!) but most institutions are not open to the adoptions. Why institutions would not allow it? The video I posted answers that question for me. How you treat those less fortunate tells how you view the value of their life.

Wednesday, May 5, 2010

Nina's 4th Birthday

9 What are your thoughts?
On May 1st, Nina turned 4 years old. This was not an ordinary day, or an ordinary birthday, but rather, a every significant day in her life. Her 4th birthday was the day that we celebrated her, the day that she was showered with balloons from friends, had her own cake, and we sang happy birthday to her.

But what is even more significant is what did not happen. Saturday was not the day that someone came to take her away to an institution. Saturday was not the day where she would have began to slowly die. Saturday was not her death sentence. Saturday was a day of life, a day of rejoicing. She once was lost, but now she is found, she is loved, she is wanted!

The reality of this day weighs so heavy on my heart. A child saved from an institution...a child that we sacrificed so much so that we could bring her home. And she was worth it!

Happy Birthday my sweet little girl. You have hope and a future. You are loved!

Last August we began the journey of adoption. I did all I could so that we could get her home as soon as possible. Her 4th birthday looming in the back of my mind. And now she is home!

A few months ago I shared a post about what these institutions are like. I don't want to forget, I don't want anyone to forget what happens to children with special needs in Eastern Europe. Ukraine was no different than Serbia is. She was so close to being sent away all because of her Cerebral Palsy.

So I will share this video with you again. The images are hard to see, but they need to be seen! There are too many orphans that need a family, too many Nina's out there. You don't have money? Neither did we, God provided. Do you have room for one more bed, do you have room for one more persona at the dinner table? Do you have $10 or more that you can give for one of the children from Reece's Rainbow? You might not be able to save one of these by bringing them home, but you can help another family. You can really save a life!

So watch the video, and allow these images to be etched in your mind. It is okay if you cry a little as it touches your heart. Because most likely nobody will cry for these orphans that die in institutions, nobody cares. Will you?

Sunday, May 2, 2010

More Than We Can Handle?

0 What are your thoughts?
So it seems like my last post did make some people question weather there is a verse in the Bible or not that says that God does not give us more than we can handle.

Sorry if I was not clear, I was talking about trials of life!

No, the Bible does not have a verse that says that God does not give us more than we can handle regarding life being hard. This statement is true, and what I was referring to in my previous post. The verse where something similar to this "cliche"is found, has been used to comfort ourselves and others when life gets tough. As in "Life is really hard right now, but remember, God does not give us more than we can handle." There is no place in the Bible where we are promised that we will not be given more than we can handle when it comes to trials. There are however, many promises about God walking with us and carrying us through the storms of life. This is why we need Him.

So where does this misquote come from? There is a verse in the Bible that talks about God not giving us more than we can handle. It is found in 1 Corinthians 10:13. This statement, however, refers to temptation. No, we will not be tempted beyond what we can handle. Now that is a promise.

But remember that the temptations that come into your life are no different from what others experience. And God is faithful. He will keep the temptation from becoming so strong that you can't stand up against it. When you are tempted, he will show you a way out so that you will not give in to it. 1 Corinthians 10:13

So the correct way to use the "God does not give us more than we can handle" promise, is when we mess up. When we give in to temptation. It is when we mess up than we can say, "You know, God does not give us more than we can handle, I made a bad choice." Or it can be an encouragement that we can stand firm and say, "No!"

Hope this makes things more clear. Again, sorry for the confusion.

Saturday, May 1, 2010

The Fiery Troubles of Life

2 What are your thoughts?

Most of us have heard, "God does not give us more than we can handle." A while ago I learned that this statement is not true (if you thought this is in the Bible, sorry to burst your bubble, the statement is taken out of context!) There are no promises from God that this will be true, and as a matter of fact, if we could handle it on our own, we would not need God. When life is more than I can handle, I do have a promise from the Lord that He will carry me through.

Lately life has been hard. Not just a little hard, but I am emotionally depleted for many reasons. I have many friends going through some very difficult and painful situations as well. In times like this, I have to consciously pause and remind myself that God is in this, and God is good. Even when the world comes crashing down.

The world has little hope to offer, and sometimes what happens in our lives is not easy, it is hard, and we wish we did not have to go through it. Thankfully I do serve a God who is full of love, compassion, and unconditional love.

1 Peter 4:12-13 says,

12 Dear friends, don't be surprised at the fiery trials you are going through, as if something strange were happening to you. 13 Instead, be very glad -- because these trials will make you partners with Christ in his suffering, and afterward you will have the wonderful joy of sharing his glory when it is displayed to all the world.

You know, the crazy thing is that I am surprised and get hit hard when the fiery trials come! Do you? And I often think of Christ's sufferings mainly those faced at the cross. But He was a man of many sorrows. He understands, even more fully than I do. He feels my pain, He knows it, and He cries tears along with me. But despite the fiery trials there is a promise, a promise of wonderful joy and the sharing his glory. What a promise!

John 16:33 says

I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world."

Again a reminder that life will have trials. Life will have sorrows. But I can have peace in Him who has overcome the world.

Just a few days ago a new dear friend of mine (who is adopting Nina’s best friend) shared some of her journey with me. Part of her sharing was Psalm 46. I read this while we were at the hospital. She did not know that I needed to hear this. And how I held on to the verses (which led to this post)

1 God is our refuge and strength, always ready to help in times of trouble. 2 So we will not fear, even if earthquakes come and the mountains crumble into the sea. 3 Let the oceans roar and foam. Let the mountains tremble as the waters surge!

4 A river brings joy to the city of our God, the sacred home of the Most High. 5 God himself lives in that city; it cannot be destroyed. God will protect it at the break of day. 6 The nations are in an uproar, and kingdoms crumble! God thunders, and the earth melts! 7 The LORD Almighty is here among us; the God of Israel is our fortress.

8 Come, see the glorious works of the LORD: See how he brings destruction upon the world 9 and causes wars to end throughout the earth. He breaks the bow and snaps the spear in two; he burns the shields with fire. 10 "Be silent, and know that I am God! I will be honored by every nation. I will be honored throughout the world." 11 The LORD Almighty is here among us; the God of Israel is our fortress.

And the Lord almighty was with me. He brought the Russian speaking lady to show me, to show Nina, and our family, that He is ever present in our lives. That His love is abundant and that He never lets go.

You might be going through some fiery troubles of life, but remember to be still, because the Lord almighty is with you, He is your fortress, and He will carry you through.



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