Monday, May 31, 2010
5 Months Home!
Sunday, May 30, 2010
Adoption: Love Grows
Friday, May 28, 2010
The Great Outdoors!
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!
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.
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!!!
Fun In The Sun...But Not Alone!
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!"
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
Nina's Walker
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!
Thursday, May 20, 2010
What Would You Do?
Wednesday, May 19, 2010
Dancing With Angels
Sunday, May 16, 2010
My Teacher of Life
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
Monday, May 10, 2010
Not a Mistake: A Gifts 2 Essay
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.
"What!"
"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
Our first night in
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 façade. 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
Saturday, May 8, 2010
Mother's Day Montage
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
Wednesday, May 5, 2010
Nina's 4th Birthday
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!
Sunday, May 2, 2010
More Than We Can Handle?
Saturday, May 1, 2010
The Fiery Troubles of Life
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.
1 Peter 4:12-13 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.