Monday, October 31, 2011

Walking Sleeping Beauty

3 What are your thoughts?
Today, for the first time, our family went trick-or-treating! The last few years we have been the ones to pass out candy. However, we knew this year with the girls in school we wold have to venture out and join in the fun. Besides, there is a reason Andy rhymes with candy...he is one happy daddy!

I could not find my camera anywhere to take pictures of the girls!

Nichole was not too excited to leave the house, we were having a meltdown. When she is dressed up, she likes to watch a princess show (yes, pretty much our dress-up clothes consist on different princess costumes). She sat on the stroller and held on to her basket with loud protests. Our first stop was enough to get her in the mood! I know what she was thinking, "You mean all I have to do is go to people's houses and they give me a piece of candy? I am in!" And in good-happy Nichole fashion she said, "please", "thank you," and "bye, see you!" to everyone that gave her candy. To the many people we saw, she waved and offered a great smile.

Ellie had a great time and was the only brave one to go to the "scary" houses. Two of our neighbors go all the way out... in a scary way!

Nina, well...this is what she thought of Halloween...

Yes, Nina decided it was a good day to start walking independently! For a lack of a camera I did the best I could at the time, which meant I was using my laptop to tape her. We are hoping this is it! This has happened 2 other times. Nina walks for a day and then, well, she doesn't. Maybe this time she will be walking for good!

If you are looking for the next post about our journey with Down syndrome, hang in there! I made a  "map" and I have 6 more posts to share. I will resume on Wednesday since one of our college friends is coming to visit for a couple of days.

If you are new here, I would love for you to share in our story. You can begin reading here: Road Marker 321. From there, you can click on the links to the next posts. As I have shared before, the next few posts deal with the "ugly" side of dealing with Nichole's diagnosis of Down syndrome. It has been quite the emotional experience to go back and read my journal. I was so mistaken about what life with Nichole would be like. I think about a day like today, as we go trick or treating, and how normal our lives are with her. And how charming she can be! It is sweet when your child stands out because she is demolishing stereotypes, showing people that kids with Down syndrome are more alike than different, that she is the cutest Cinderella out there, she is polite, and she has the ability to inspire love.

What did you do for Halloween? Did you get lots of candy?

Saturday, October 29, 2011

Pom-Pom Pets

3 What are your thoughts?
For school, Ellie and Nina had to make their own pets.Ellie made a puppy a long time ago, but Nina was taking her time deciding what she wanted to do. When I was a kid, I had a pom-pom craft book. For a while, I was obsessed with pom-poms, making all sorts of creations. One of those creations, were pom-pom pets! So when I heard the girls had to make a pet, I figured it was time to teach the girls the art of making pom-poms. When Ellie realized what Nina and I were up to, she decided she needed to make a new pet. A pom-om puppy!

They turned out pretty cute, don't you think?



 So, this is how you make pom-poms. 
You need sturdy cardboard. We found a box and we cut different sizes. One for the body, one for the head, and 4 for the legs.
Once you have the strips, you wind up the yarn around and make it as thick as you want. The more yarn, the fluffier and fuller the pom-pom.


 


Once you have the desired amount of yarn. Slide it off the cardboard (it helps to bend the cardboard in the middle). Hold it really tight. Then with another piece of yarn, you tie it around the middle. Make a tight knot.

Carefully cut the loops on both sides. 
 

 Once both sides are cut, you begin to see the pom-pom taking shape. Fluff it, and give it a nice "haircut."
Remind your kids that it is only a little haircut, or your pom-poms will get to be really small!

Here you can see how big those pom-poms really do get once they are fluffy.

We were having trouble tying the pom-poms.  Ellie does well with tying, but I was having to do Nina's. I came up with a solution. I cut a slit in the middle of the cardboard strips. I had the girls wind up the yarn around the solid part. When they were done, we slid it to the part where there is the slit. Then they were able to tie the yarn in the middle without loosing the loops. It made it a lot easier!

See? I wish I would have thought of that from the beginning!
 

We got all the pom-poms needed for each pet. Ellie was making a dog, and Nina was making a kitty.
 

Then it was time to glue the pieces together. This is the part that needed special mommy involvement. 
 

I put the glue on the legs. I handed each leg to the girls, and they each placed them on the body. 
 

Next we did the faces. At some point we realized we did not have ears for Nina's kitty. We cut triangles out of brown felt.
I glued all the parts in the face because I was afraid the girls would burn their hands with the hot glue. I had them place the eyes exactly where they wanted them, then I glued them on. Same with the nose. For Nina I did the ears and the whiskers too. Ellie was able to do the snout, and the ears.


Finally, we had the body and the faces. Now we were ready to put them together.

 Nina's kitty! We added a little string of yarn to make a scrawny tail.

And Ellie's puppy.

 Nina with her kitty.

Ellie with her puppy.

And here is Ellie's original puppy. She made it with no help at all! She cut out cardboard, then she covered it with tissue paper. Then she taped all the parts. I think she did fantastic! I told her this puppy is just as nice as the pom-pom one, so much so, that I wanted to share it with you too!

Friday, October 28, 2011

She Has a Broken Heart

4 What are your thoughts?
The pediatric cardiologist came in the room to go over the results of the echo-cardiogram.  The doctor was a man with soft dark eyes and a gentle disposition. His Indian accent pronounced, yet easy to understand. 

He began by be-bopping what a normal heart sounded like.  Then he proceeded to be- bop to Nichole’s heart. A talent I found helpful in understanding what he was talking about. He said the echo had showed 2 different heart defects. A VSD (Ventricular Septal Defect) and an ASD (Atrial Septal Defect). Basically, Nichole had 2 holes in her heart. He reassured us that most babies are born with a VSD, and that they usually closed on its own. However, this was not always the case for babies with Down syndrome. Because of this, we would not be able to go home the following day. Instead, they would do another echo and watch for progress.

Her heart is broken, just like her. This is happening because she has Down syndrome. 

Down syndrome. Those words consumed my thoughts and my feelings. They robbed me from enjoying my newborn baby. When I looked into her face, I did not see Nichole, I saw Down syndrome. The holes in her heart were magnifying glasses announcing in bold letters…YOUR BABY HAS DOWN SYNDROME!

I knew I was not the only one who saw Down syndrome when looking at her.  My mother had seen it. Even my friend’s 6 year old had exclaimed with innocent delight “She looks just like Jennifer when she opens her eyes!” I knew that if a child could see it, so could everyone else. And I hated it. I hated that it was obvious, I hated that people could see that my baby was different. I hated that I saw her as different, that she was different. I hated that she had Down syndrome.

By the end of the day, I still had not received the promised pump. I felt sure my baby was not nursing successfully.  Sure that it was because of Down syndrome. I needed the pump. I needed to be successful at something, and making milk was the only thing that seemed promising. But there was no pump. I kept asking for the pump, and the answer was always the same. “I will bring it to you as soon as it gets here.” 

I had a baby with a broken heart and a broken sucking reflex.

I don’t know if I can do this much longer.

I picked up Nichole from her bassinet, and our bracelets sang their song in their close proximity.

“We belong together,” I repeated, feigning a happy tone for my husband.

Do we really belong together?

I settled on the couch, time to nurse her once more. Time to worry she was not getting enough to eat. Time to be reminded that she had low muscle tone. 

It is because of Down syndrome

We belong together,” I said once more.

Do we belong together? Because I don’t want to. I don’t want us to belong together.

“We belong together.” My mantra, willing it to the deep places of my heart. Desperate to make it be true.

Yet all I could think was that my baby had Down syndrome. My baby was not getting enough to eat, and she had a broken heart.

So I smiled while I stared at Nichole. Because I was pretending. Pretending that I was okay. Pretending to the nurses, to my husband. Even pretending to myself.

Don't miss:

This Is Tough

3 What are your thoughts?
When I decided to share our journey with Down syndrome for the month of October (Down syndrome awareness month), I knew it would be tough. Some of the essays you have read here I wrote when Nichole was about 6 months old and I was ready  to process what had taken place.

If you have been reading along, you know that when I was pregnant with Nichole, God gave me a dream, and I knew she would have Down syndrome. Throughout my pregnancy I heard God's voice, "I don't make mistakes" and I believed it, I held on to it. Somehow, I felt ready, I felt prepared. I trusted in God's plan.

Yet, somehow, when Nichole was born...the reality of the situation threatened the very truths I held on to. And somewhere along the way, I let go of those truths and I began to question.I  felt ashamed at my lack of faith, afraid that people in our church would see how I was feeling. A pastor's wife shaking her fist at God and demanding "Why!"

The last days at the hospital became very dark. I have little recollection of them, other than my feelings, and trying to keep it all together. I became obsessed with nursing and pumping for Nichole because it was the only thing I felt I had control over. The simplicity of feeding my baby became a significant part of my journey the first weeks of Nichole's life.

Why do I share this with you now? Because the next part of my journey is quite a vulnerable place in my life. I was in a hole, a deep dark hole. Inviting you in..well...is a little scary. Okay, a lot scary! The entries in my journal during that time, are very hard for me to read, let alone share.

If you have a child with Down syndrome and struggled with your child's diagnosis. I think you might have an idea of how this feels.

Or you might wonder why I am even sharing all this stuff. As a Christian, I felt great shame in questioning God, doubting His perfect plan, doubting that He was indeed blessing me with Nichole. I do not believe that I am the only one who has questioned God. I wish I would have had the courage to share my feelings at the time, because I know now that I would have had great support from those that had walked this road before. And I would have known that it was okay. That for some, questioning God, is part of the journey.

My faith in God, my trust in Him, was a broken vase. I was so broken. Allowing you into that brokenness is hard. But God did meet me in my brokenness, I did come back, much like a prodigal daughter.

In the words of Henry Nouwen...
"The immense joy in welcoming back the lost daughter* hides in the immense sorrow that has gone before....our brokenness may appear beautiful, but our brokenness has no other beauty but the beauty that comes from the compassion that surrounds it."

I will continue to share here, I will continue to write. I am not pushing this to be an October thing. Bear with me, this is hard.

And this is something I want to say, maybe as a disclaimer, because the next few entries will be hard, and dark, and ugly...

Nichole is the most beautiful gift I have been given. I wish I had known then what I know now. I wish I would have known the love that would surround me. The joy that shines from this child of mine. The love I have for her is so strong, so different, so fueled by God's own love for me. It is hard to explain. She inspires love in me.

Road Marker 321 came to me also as a dream. It captures the significance of this journey I am sharing with you, it is the most "close to my heart" essay I have written. So as you read, as you see into the hole I was in, please remember that this is a story of transformation, of great beauty, and of a perfect gift. The swamp was such a short moment in the greater scheme of love.



(*Italics by me, and I changed the word son for daughter. From the book "Return of the Prodigal Son")

Thursday, October 27, 2011

Nursing

1 What are your thoughts?

My first nursing experience was discomfited. It was not a letdown problem, lack of milk, or latching on. No, Ellie was, quite simply, above average. She latched on, milk flowed, and we were done. Five minutes tops. One side enough to fill her; and my body, asymmetric for 10 months. 

At the hospital, a few nurses insisted that Ellie was not eating enough. They maintained that babies are supposed to feed approximately for 15 minutes on each side. So I worried, and I charted. I wrote down the time she would begin feeding, how long it took, and the number of wet and poopy diapers. With charts in hand, we visited the doctor for a 2-week baby check-up. Some babies are quite efficient, he said. Ellie was putting on weight, and her diapers showed she was getting enough.

This, however, proved to be a challenge when it came to “style.” I sat, with my shirt tightly tucked under my chin, shoulders scrunched, mannequin pose. There was no gazing into my baby’s face, or the “deep bonding” that takes place as you nurse your baby. Forget it; I was trying not to get a neck cramp. Mastering nursing, was not something I had checked off my “first time parenting” list.

Nichole, however, seemed to be doing things by the book. So much so, that not one nurse thought it would be a good idea to have a lactation consultant come, just in case. Just in case, because babies with Down syndrome tend to have low muscle tone, and sucking requires the muscles in the mouth to work properly.

Although I was no expert when it came to nursing, I sensed Nichole was not really nursing well. Her diapers were barely wet between feedings. 

“I am concerned about Nichole’s wet diapers,” I said to a nurse shortly after lunch.

“Oh, what do you mean” she asked sweetly.

“They are barely wet” I responded.

“Oh honey” she replied, “Babies are really small, so their diapers might not feel very wet.”

“The diaper feels almost dry between feedings,” I demanded.

“Don’t worry! She is doing fine!”

It bothered me that the nurse was not concerned like I was. More important, it bothered me she did not take me seriously, like I did not know what I was talking about. She should check to make sure Nichole was eating well.

“I would like a pump so I can measure and see how much Nichole is really eating.” I finally said.

“We don’t just give pumps unless there is a real reason. Sometimes insurance will not cover some things unless there is a real need.”

“Do I seriously need to ask my husband to drive home so he can bring me my pump?”

“No, that will not be necessary.” The nurse assured me, “Your baby is eating just fine. I have seen her eat.”

“Well, at least I want the lactation consultant to come in and watch her eat. Just to make sure she is okay.”

A few minutes later, the loud and robust woman I had met 2 years before when Ellie was born walked in.  I knew her “technique” and I knew she was not shy or afraid to grab body parts. Impossible to forget someone that touches you in private places without asking.

We sat on the couch. Same furniture that became a bed to my husband at night. Her face, too close to my chest as she listened intently at Nichole’s sucking and swallowing. 

“She is doing beautifully!” she announced vociferously, flailing her arms to accentuate her expression.

“Then why are her diapers so…dry?” I asked.

“Hmmm... that certainly should not be the case!” the concern in her expression seemed cartoonish, “She should be having full, wet, diapers.”

I felt relief. And suddenly, I found myself fond of this woman.

“Well, she is not. I was wondering if I could get a pump to track and make sure how much she is really eating.” I asked.

“Yes, I will make sure to send one to you.”

As we were talking, a team of nurses came into the room, wheeling a large machine.

“We are here to do an echo.” One of the nurses announced.

With that, the lactation consultant left and a nurse took Nichole from my arms. They placed her in her clear, plastic crib and stripped her down to her diaper. Her dry diaper. Nichole, tired from nursing, quickly fell asleep. Unaware of the warm gel on her body, and of the ultrasound machine that moved around her chest.


Next: She Has a Broken Heart

Don't miss:
Road Marker 321  
My Body Is Cooking a Baby: Part 1
My Body Is Cooking a Baby: Part 2
My Body Is Cooking a Baby: Part 3
The Dream
Level 2 Ultrasound
Your Baby Might Have Down Syndrome
Surprised by Joy: Part 1
Surprised by Joy: Part 2
Surprised by Joy: Part 3
Surprised by Fear

We Belong Together

Wednesday, October 26, 2011

She Has Down Syndrome

3 What are your thoughts?
“You know that book I just read?” Andy asked sitting at the foot of my hospital bed.

“The Henri Nouwen book?” I replied, “What is it called?”

“Return of the Prodigal Son.” 

“Yes… I remember.” I looked down at Nichole who was sleeping in my arms. Her rhythmic breathing against my chest reminding me she had been inside my body that morning. “Why do you ask?”

“I think God used that book to prepare me for Nichole. For her having Down syndrome.”

 Andy had been talking about this book for the last few months. Henri Nouwen, a priest, had felt God’s call to join L”Arche; a community for people with developmental disabilities. It was in that place, and with those people, that God spoke to Nouwen about his brokenness. The lessons he learned, and the pages of his book, had challenged my husband. The last few months Andy had been on a journey of returning to the “Father” as a prodigal son, much like Nouwen. These outwardly “broken” people had confronted his own broken places.

I swallowed a hint of resentment. It’s bitter taste lingering for a moment. I wanted to shake my fist at God and ask him why He had given me a broken baby. Somehow, I wanted Andy to feel that too. It seemed unfair that he had something to grab on to. Unfair that he held a sense of stability while I was losing my balance in the tight rope of life. No safety net to catch me. 

Eyes still fixed on Nichole, I stroked her back gently. Afraid to make eye contact with my husband. Afraid he would see that I was about to fall.

Andy ended the momentary silence.

“I will call my parents and let them know.”

I busted my intent look on Nichole, “What will you say to them?”

“I don’t know.” He paused for a moment, “I guess I will just tell them that Nichole has Down syndrome.”

Andy had called our parents during the excitement of the morning. He gave the details pertaining the labor, weight, and time of birth.  He shared with them too, that he had been surprised by joy. It did not seem fair that he had to call back…”by the way, your granddaughter has Down syndrome.” I felt cynical.

Andy stood from the foot of the bed. He took a deep breath and walked across the room towards the large windows that spanned across the far wall. He pulled the black flip-phone out of his jeans pocket. I looked down at Nichole once more and willed myself to listen to her steady breathing. 

His parents offered their understanding and the reassurance that Nichole was precious and loved.
My mom and dad, on the other hand, would have to wait for the news. I was not ready to tell people. I was not ready to make that call. 

My mom would be coming the following morning. I would tell her then. I needed time to gather my thoughts. I wanted to own the words I would use when I delivered the news. I was afraid. Afraid of the stigmas of our Mexican culture. Afraid because my mom looked away from people with disabilities. Afraid that she too, would see Nichole as broken. 

Broken.

I hated the fact that my baby was not perfect. I hated the fact that I felt that way.

Andy pulled out the couch and began making the bed. The dark blue sheets contrasting the white institutionalized sheets on my bed. The same bed where I had given birth that morning. An IV still attached to my arm and a broken baby sleeping in my arms.

I don’t make mistakes.

Then why. Why did it feel like it was a mistake?

Andy came to my bed and reached out his arms. I handed Nichole to him and he gently kissed her on her forehead. He walked towards the bed and laid down, with Nichole resting peacefully on his chest. He reached out for the remote control and turned the television on.

“What do you want to watch?” he asked.

“Anything. I really don’t care.”

The noise of a game show filled the room, sending me into a trance. The physical and emotional exhaustion of the day taking over. And somehow, it was morning.

I would call my dad first. He always took things better.

“Dad” I said, “Nichole has Down syndrome.”

There was a pause and I heard a deep sigh. “You know sweetheart.” he gently replied “If you had to choose a disability for any of your children; you would want it to be Down syndrome.”

My dad worked as an interpreter for several Children’s Hospitals. I knew he had seen and interacted with hundreds of children with special needs.

“I don’t know what it is” he continued, “but the connection I see between these parents and their children is uncommon. It is touching. It makes me wonder what it is they have that other people don’t. And they feel so lucky, so lucky to have their children.”

His words touched me. I was struggling to feel connected to Nichole. Every time, as our matching bracelets would reunite I whispered, “we belong together.” It was another reminder that I needed this to be true. It was a morsel of hope.

My mother arrived at the hospital mid-morning, ready to meet her new granddaughter. She smiled and awed at how beautiful Nichole was. She took her from my arms and settled in the rocking chair by my bed while Andy took a break and went for a walk. She rocked my baby, back and forth.

I wanted to tell her that God had picked us for a reason. To tell her that somehow this was part of God’s plan. I wanted to justify how it was okay that my child had special needs. 

I sat at the edge of the bed, watching them. Watching my mom, her expression. 

“She has Down syndrome.” I blurted out.

My mom continued to look at Nichole, continued to rock, same smile on her face.

“I know,” she said.

She knew. And nothing changed. I watched them, rocking together. Grandmother and child.

“Take a picture of us will you?” she asked, “I want to remember the day that God sent a little baby girl to change our lives.”

My mother and this relationship we had. So tested, yet so strong. More than anyone else, I cared about what she thought. Maybe because I knew I was so much like her. Maybe because if I saw strength in her, I knew I could be strong too.
 

Next: Nursing

Don't miss the beginning of our story:

Tuesday, October 25, 2011

I Was Cold All Day

1 What are your thoughts?
Today, when I picked the girls up at school Ellie said, "Mom, you did not send me to school with the right coat. I was cold all day!"

I was surprised she was cold, since I usually hear the opposite complaint. Once we were home, she told me she had a headache. I suggested she lay on the coach and watch a show. She was quick to agree and was laying down in no time. A few minutes later and her eyes were watery and red. I felt her skin and sure enough, she was very warm.

"Sweetheart" I said, "No wonder you felt cold all day, you have a fever!"

And so I have in my hands a sick little girl. One that loves to be held when she is not feeling good.

Therefore, I do not have a post on our journey with Down syndrome for today! If you are new here, this is great, because now you can catch up!

You can begin by reading HERE: Road Marker 321

When your kids are sick, what do you do to help them feel better?

Monday, October 24, 2011

A New Family

2 What are your thoughts?
By Ellen Stumbo

My 2 year old walked into the hospital room. That same morning when we dropped her off at our friend’s house, she was just a baby. Within hours, she had grown to be a big girl. The excitement to meet her new baby sister reflected in her big smile and shinny eyes. She held hands with her best friend, Jennifer, a little girl with beautiful long brown hair…and Down syndrome.

I knew Jennifer well. I had watched her almost every day for a year while her mom, Kristin, worked part time. I knew Down syndrome in a personal way, and I loved Jennifer almost as much as if she was my own. I would have described Jennifer as a gift, and as perfect. I felt puzzled by the contradictory feelings I had over Jennifer diagnosis and my own baby’s diagnosis. How could I love Jennifer and accept her so easily, yet all I saw when I looked at my baby’s face was Down syndrome?

Ellie and Jennifer ran towards the bed, ready to take in the baby who was sleeping in my arms. Andy picked Ellie up and placed her by my side. Jennifer joined us for only a little bit, then Bill and Kristin took her for a short walk so we could have some family time.

“I want to hold her,” Ellie said

“Yes sweetie” I responded. “But you have to be really careful and very gentle”

I placed Nichole on Ellie’s lap.

Their relationship will be so different from what I dreamed.

“Oh baby! Oh baby!” Ellie gently stroked Nichole’s face while she spoke to her and kissed her face.

“Jesus loves me this I know” Ellie sang, “For the Bible tells me so. Little ones to Him belong, they are weak but He is strong. Yes, Jesus loves me. Yes, Jesus loves me. Yes, Jesus loves me. The Bible tells me so.”

Ellie, at only 2 years old, had speech above average. She could talk clearly and in full sentences.

How old will Nichole be when she can sing this song? How old will she be when she can speak like Ellie speaks now?

“Oh mommy!” Ellie said, “Nick-O is the most beautiful baby I ever saw. I love her so much, she is perfect.”

Love. Perfect.

My love was not perfect. My love was being tested. My 2 year old, however, was showing me what unconditional love looked and felt like.

Maybe Nichole is perfect for our family. Maybe she will teach me how to love.

Bill, Kristin, and Jennifer returned. Ellie and Jennifer played in the closet and ran in the room while Andy and I talked to Bill and Kristin. They took turns holding Nichole and admired how beautiful and perfect she was. And we talked about Down syndrome. I confessed I knew Nichole had Down syndrome from the moment she was born because she reminded me so much of Jennifer.

We had shared with them that our baby might be born with Down syndrome when I was pregnant. It was easy to talk to them about it, they understood what was happening and more important, they knew how we were feeling. We talked about telling people that our baby had Down syndrome. But how do you tell other people?

While they had no advice for us, it was meaningful to have someone to talk to about it so openly.  Even more so, they reminded us we were not alone. We were good friends; they would walk this road with us. But more important, all of a sudden, we had become family.




Sorry Bill and Kristin. We did not think to actually take a picture, but at least Andy thought at the time to snap a shot. better than nothing!


Sunday, October 23, 2011

Weekend Off

4 What are your thoughts?
If you have been waiting for the next part of our "journey with Down syndrome," I apologize! I realize that once again I took the weekend off. I also realized that there are not many days left in October, so I need to get writing!

I have been trying to stick to the "blog posts should be around 600 words." So the next few days you might get to read a little bit more than that. Besides, I feel like I am just getting started!

If you are new here, October is Down syndrome awareness month. This year, I am sharing our story. So every day I have written a little bit about how Down syndrome came to be a part of our lives.

You can start reading HERE: Road Marker 321 and then follow the links from there on.

If you have been reading, has this been helpful to you? If you have a child with Down syndrome, have you been able to relate? If you do not have a kid with special needs, has this helped you understand what it might feel like for a friend to have their child diagnosed with Down syndrome or other special need?

Thank you for all the kind comments, I have really appreciated your thoughts.

Friday, October 21, 2011

We Belong Together

13 What are your thoughts?
By Ellen Stumbo

     The pediatrician’s words taunted Fear. The same Fear that had showed up with Nichole’s first breath. Fear sat on my shoulder, arms wrapped tight around my neck, almost choking me. Its voice, whispering in my ear, trying to seduce me. Don’t you see, Down syndrome is something bad, really bad. Everyone will be sorry for you, like this smart doctor who knows all about this condition. Break down. Cry. Say it is not fair. Be angry.


     I stared at the man who looked at Andy and I with pity. It would be so easy to believe Fear. It would be so easy to feel sorry for myself and for my baby. However, God had spoken to me while Nichole was in my womb. I don’t make mistakes.

     As Fear whispered to me, so did God. A reminder of who I belonged to, and whom my baby belonged to.

     I don’t make mistakes.

     “Don’t say you are sorry.” I responded to the pediatrician. “Our baby is exactly who she is meant to be. God does not make mistakes.”

     He took a deep breath, and said slowly, “You religious people take things better.”

     His reply felt patronizing. Being called “religious,” while trying to understand my feelings, and trying to hold on to God’s truth made me feel like a child. Yet, it was all I had.

     Andy talked to pediatrician about Nichole’s heart condition and what it meant. They discussed some other health issues and things that maybe we should be keeping an eye on.

     When the doctor left, a nurse brought Nichole over to me so that I could nurse her. The matching electronic bracelets that Nichole and I wore “sang” when they were close in proximity.

     “We belong together” I whispered to Nichole.

     We belong together.

     Somehow, and for some reason, we belonged together. I believed that God did not make mistakes. I knew that Nichole was exactly who she was meant to be. Every single chromosome in her body was fearfully and wonderfully created by God. I knew it. But I did not understand it.

     “She looks just like Jennifer” I said to Andy as I thought about our friend's daughter who has Down syndrome.

     “I think she looks a lot like Ellie” he responded.

     Andy and I stared at our baby. We examined every part of her body. Taking note of all the characteristic physical features of Down syndrome.

     “Do you think God is punishing us?” Andy confessed.

     “No”

     “I don’t think so either. I just had to say that aloud because I know God does not work that way. He gives good gifts, and children are a blessing. She will be a blessing in our lives.”

     We belong together.

     Nichole was having trouble nursing. I did not feel she was successfully sucking, yet the nurse insisted she was doing just fine. After my baby was fed and changed, we started snapping more pictures of her. Then we asked one of the nurses to do the one thing that we had forgotten. The one thing that was a symbol of celebration, although I did not know how to celebrate yet. We asked her to take a family picture.

     We belong together.

     A phrase that would become my mantra at the hospital. Words that I would work and work like a hard piece of clay that needed to be softened. A truth that I needed to remind myself of. A statement that I needed to believe.

     We belong together.




Next: A New Family


Don't miss:
Road Marker 321
My Body Is Cooking a Baby: Part 1
My Body Is Cooking a Baby: Part 2
My Body Is Cooking a Baby: Part 3
The Dream
Level 2 Ultrasound
Your Baby Might Have Down Syndrome
Surprised by Joy: Part 1
Surprised by Joy: Part 2
Surprised by Joy: Part 3
Surprised by Fear

Thursday, October 20, 2011

Surprised by Fear

6 What are your thoughts?
By Ellen Stumbo

     Andy described Ellie’s birth as running a marathon with no training. Nichole’s birth, however, was fast and perfect. I understood his sentiment when he whispered those words, “I have been surprised by joy.” His words, like a vapor. A mist that covered the crowded hospital room. If I could breath them in, allowing them to fill my lungs, my mind, my thoughts. I needed those words to be my own. My baby’s naked backside faced me, taunting me, challenging Andy’s statement. Her thick neck and a floppy body making its way into my arms. Down syndrome about to be handed to me. I had been surprised by fear.


     One of the nurses laid my baby on my chest. I stared at a small face with closed eyes.

     “Hello Nichole.” I whispered

     I held her small hand, aware of her short fingers and broad palm. Her feet, pudgy and with a noticeable gap between her big toe and the rest of them. Her face with a button nose. Ears small and bent at the top. Open your eyes please.

     “I will take her now.” A nurse reached to take Nichole.

     “Stay with her,” I said to Andy, “And take some pictures.”

     I watched as Andy crossed the room with the camera in his hands. Excitement in his step in celebration of the birth of his second daughter.

     The Apgar scores were good, nothing unusual, and nothing memorable. She weighed 7 pounds and 9 ounces. Maybe she doesn’t have Down syndrome. Babies with Down’s are very small, and Nichole is bigger than Ellie was at birth. Her weight. Somehow, her weight gave me hope.

     Meanwhile, I had to deliver the placenta and get stitched. During this process, nurses would come and “knead” my stomach, as they worked my uterus back to its small, original size. A painful experience that I welcomed, as it took my thoughts away from my fears.

     Andy came back to my side once I was ready. He leaned close to me, his eyes still full of joy.

     “She is so beautiful!” He said.

     She is so beautiful? Could a baby with Down syndrome be beautiful?

     “Do you think she has Down syndrome?” I asked in a quiet voice. I did not want anyone to hear me.

     My husband looked at me, puzzled for only a second.

     “Let me go check.” He turned around, back to Nichole’s side. I wonder how he could take that question so lightly, much like I had asked if Nichole’s eyes were green, or if she had curly hair.

     He came back, leaned close to me again. “I don’t think so.”

     “How do you know?”

     “I checked her hand. She does not have the one line that people with Down syndrome have, her lines are normal.”

     Maybe she doesn’t have Down syndrome. Babies with Down’s have only one line across their palms.

     “I do think she has a heart issue though” Andy continued, “The pediatrician has been listening to her heart for quite some time.”

     We looked at each other for a while, and then my husband broke the silence with a big smile.

     “Can you believe she is already here? This is incredible!”

     “Yeah, I know! It was so easy; I could do this 10 times.” I bragged, returning the smile.

     “I don’t think so.”

     We heard the pediatrician in the background, asking the nurses to leave the room. His remark made Andy and I stop our conversation and turn to him. The doctor making his way towards the bed.

     “Why don’t you grab a chair on the other side of the bed.” he said to my husband.

     Andy and I looked at each other as he slowly made his way around the bed.

     The doctor grabbed another chair and pulled it close to us. He sat down and was silent for a moment. My heart pounding loudly, I was afraid I would be unable to hear what the doctor had to say. Yet, I wasn’t sure I wanted to hear what he had to say.

     Breathe Ellen, breathe.

     “There are a couple of things that concern me about your baby,” he finally said. “She has a heart murmur, and we will need to check into that with an echo, which is an ultrasound of the heart. She also seems to have low mus…”

     “Do you think she has Down syndrome?” I interrupted him.

     He looked at me in surprise.

     “We knew it was a strong possibility,” I continued. “And I think she has Down syndrome.”

     He hung his shoulders and looked down at the floor. He slowly began to shake his head. He lifted his head and looked intently from Andy to me.

     “Yes” he responded. “Your baby has Down syndrome. I am so sorry.”


Next: We Belong Together

Don't miss:
Road Marker 321
My Body Is Cooking a Baby: Part 1
My Body Is Cooking a Baby: Part 2
My Body Is Cooking a Baby: Part 3
The Dream
Level 2 Ultrasound
Your Baby Might Have Down Syndrome
Surprised by Joy: Part 1
Surprised by Joy: Part 2
Surprised by Joy: Part 3

Wednesday, October 19, 2011

Surprised by Joy: Part 3

4 What are your thoughts?

     Andy and I barely had time to look at each other in incredulity. Was this really happening? We were giggling with excitement and nervousness, much like small children do when they get to ride a roller coaster for the first time. But before we could say anything at all, a swarm of nurses came rushing into the room.


     They wheeled my bed to the delivery room. Andy following the busy workers who handed him a stack of papers and instructed him to sign them now!

     I transferred myself to the delivery bed, while the nurses held their breaths. Once I was lying down, they begged me to breathe and wait for my midwife, who had just parked her car and would be there in just a few minutes. I told them I was fine, I just needed to go to the bathroom.

     “Oh honey” one of the nurses said, “You do not have to go to the bathroom, that is just your baby, and it wants to come out!”

     Kim, my midwife, ran into the room already scrubbed. She washed her hands, slipped her gloves on and got to work. I was ready to push she said. I told her I didn’t think so, but I really needed to go to the bathroom. She smiled. The nurses chuckled. “You don’t have to go to the bathroom” Kim said, just like the nurses had before, “This baby is ready to come out and you want to push!” So we found the most comfortable position for me, Kim broke my water to avoid getting splashed and said, “Whenever you are ready.”

     There were many people in the room; Andy, Kim, nurses, more nurses, and even some students. I guessed Andy had signed a consent to have the students present. And here we were, in a hospital room, with about 15 people, and 13 of them strangers. All of them looking at my open flower in all its glory. I did find it amusing how they were all looking at me between my legs, with smiles on their faces, because they were about to witness the miracle of birth. So I pushed.

     On my third push I felt excruciating pain. My skin ripping apart as my baby’s head was coming out. Kim tried to help, but there was nothing she could do.

     “Oh Lord Jesus please help me!” I screamed.

     I thought I saw a student glance at me and chuckle. But just as soon as I had screamed my desperate prayer, “The head is out!” Kim exclaimed. Nurses gathered with bulb syringes as they sucked on a little nose and mouth. I knew to wait until they checked to make sure the umbilical cord was not wrapped around the head.

     “Can I push again?” I asked,

     “Yes” Kim replied, “Do you want to grab her head and guide her to you?

     “No! That is your job!” Was my quick answer.

     In the next 2 pushes she was out. Just like that. Kim lifted her up and I saw all the faces around me smiling, marveling and awing. It was 8:22 am. I looked at Andy, who held my hand and had tears in his eyes. He gently kissed me and whispered in my ear, “I have been surprised by joy.”




Next: Surprised by Fear

Don't miss:
Road Marker 321
My Body Is Cooking a Baby: Part 1
My Body Is Cooking a Baby: Part 2
My Body Is Cooking a Baby: Part 3
The Dream
Level 2 Ultrasound
Your Baby Might Have Down Syndrome
Surprised by Joy: Part 1
Surprised by Joy: Part 2

Tuesday, October 18, 2011

Surprised by Joy: Part 2

2 What are your thoughts?
     As we drove to drop off our oldest daughter at our friend’s house, I called my midwife to tell her we were on our way. She asked the usual questions, like, “How far apart are your contractions?” and “How are you handling the pain?” She said she was out the door, that she would meet me at the hospital, and to get there as soon as possible. It was 6:30 am. I did my makeup in the car and joked some more. My husband wondered if maybe after all, we should have waited home a little bit longer.


     At 7:15 am we arrived at the hospital parking lot.

     “Do you want me to go get you a wheelchair?” Andy asked.

     “Nah” I responded, “I can walk.”

     We got in the elevator at the same time as an elderly couple. We said hello and made small talk. Soon I was squatting, still looking at them and smiling. “I am having a contraction,” I explained. I wonder if Andy was embarrassed.

     As we walked to the “maternity” desk we saw the morning nurses gathered to get instructions for the day. One of them noticed us and approached me.

     “Can I help you?”

     “Yes!” I said happily, “I am having a baby today!”

     She looked at me questionably, “Wait a second here.” She turned around and was gone.

     I was squatting as a different nurse came along and told us to follow her to a small room where she would check my contractions and see how dilated I was. She handed me the hospital gown and instructed me to lie down and wait for her. Andy helped me change.

     “Hey honey,” I asked, “Would you mind rubbing some peppermint oil in the small of my back? It is pretty sore and I think it might help relax that area.”

     As I lay on the small bed waiting for the nurse, Andy and I were taking guesses at what time the baby would be born. Maybe it would be at noon, maybe early afternoon. The peppermint oil was working wonders and I continued to open up my flower and allow the baby to come “down” and “out.”

     As soon as the nurse came back in I wished I had gone to the bathroom. She hooked me up to a monitor to check my contractions and there was no way getting out.

     “Huh” she observed, “Your contractions are very close together and are really spiking. Are you in pain?”

     “Well, yeah, it is painful, but I am okay.”

     “You know” she continued, “I think I better check and see how dilated you are.”

     I almost said no, that I would wait for my midwife to get there as she was on her way. Really, who wants to have multiple people checking one for dilatation? But she was not asking me or giving me a choice, she was coming at me with a gloved hand.

     She felt around. “Well,” she exclaimed with big eyes, “I would say that you are about a 9!”

     “What!” I squealed, not in delight, but in great surprise. I quickly glanced at Andy who was looking at me with just as much disbelief.

     “Yes,” the nurse continued, “Maybe even a 10, and I can feel the baby’s head.”

     She quickly took her hand out, “We were sure you would be here a long time, being so happy and talkative.” She took her gloves off and looked at me intently, “I will be right back, and whatever you do, do not push!” With that she turned on her heal and ran out the room where we heard her yelling and calling for backup.


Next: Surprised by Joy: Part 3 

Don't miss:
Road Marker 321
My Body Is Cooking a Baby: Part 1
My Body Is Cooking a Baby: Part 2
My Body Is Cooking a Baby: Part 3
The Dream
Level 2 Ultrasound
Your Baby Might Have Down Syndrome
Surprised by Joy: Part 1

Monday, October 17, 2011

Surprised by Joy: Part 1

0 What are your thoughts?
By Ellen Stumbo


     The urgency to use the toilet woke me up once more in the middle of the night. The frequent visits to the bathroom were too common being 38 weeks pregnant. However, this time I felt uncomfortable, actually, it was more like pain. My stomach was tight and my back was hurting. I smiled. I was having contractions. I was two weeks early and I was going to have a baby--- hopefully--- in less than 24 hours.


     I read the Bradley Method of childbirth as suggested by my midwife. I studied it and was determined to have a natural birth with no drugs and no epidural. However, I was willing to change my mind and go for some relief if I had to.

     With my previous pregnancy we rushed to the hospital, only to be there for thirteen hours before I was dilated enough to push. Not this time around. I would stay home for as long as I could and go to the hospital once I was having hard contractions that were 5 minutes apart. With any luck, I would be able to sleep through some of those first contractions.

     A wave of pain came as I lay in bed and it tightened my mid section. I relaxed my body just like the Bradley method suggested. I became a flower and willed myself to open up and let the baby slide down. Not too bad, it was actually kind of fun being a flower. Another contraction came and I relaxed, picturing my petals opening up. Soon there was one more. I should time my contractions.

     My contractions were coming at constant intervals of 5 minutes, so I woke Andy up and announced that we were having a baby and we had to get going. I was thankful that just the night before I had made a list of all the things we needed to take with us to the hospital. Those things that you cannot pack ahead of time and that can be easily forgotten, like your journal or toothbrush.

     While Andy showered, I gathered the items on the list and made the bed. As contractions assaulted me I squatted, just like the Bradley method suggested. My body relaxing, my flower opening up, and my baby coming down and moving out. Oh I could picture it in my head! A tight pink flower-bud slowly relaxing, opening up, and revealing a beautiful baby girl coming out to greet the world! Oh how thankful I was to have been blessed with great imagination.

     I showered too. And even in the shower I squatted and became a flower.

     “Honey, are you okay?” Andy asked, “Almost every time I look you are squatting, we got to go!”

     “I’m okay, this just really helps with the pain.” Then I added with some humor and a sing-song voice, “I am a beautiful flower opening up to the world!”

     “Yeah” Andy responded, “I think we still got time”

     I dried and curled my hair. Births require pictures, and I was determined not to be “ugly mom.” Squatting and curling hair requires talent when you are 38 weeks pregnant, and I got to say, I was pretty good at it. However, even though I was talking and joking, my husband was not liking the amount of time I was spending sitting on my heels. He decided we needed to go, and no, doing my makeup first was not an option!

Next: Surprised by Joy: Part 2

Don't miss:
Road Marker 321
My Body Is Cooking a Baby: Part 1
My Body Is Cooking a Baby: Part 2
My Body Is Cooking a Baby: Part 3
The Dream
Level 2 Ultraound
Your Baby Might Have Down Syndrome

Sunday, October 16, 2011

Continuing Tomorrow

5 What are your thoughts?
I guess I have taken a short little break from sharing our journey with Down syndrome. I don't know if anyone is reading, but I will keep writing.

So tomorrow, I will finally get to Nichole's birth!

Saturday, October 15, 2011

Six Months Post Rhizotomy

10 What are your thoughts?
It has been six months since Nina had her rhizotomy (SDR). I can get so frustrated, thinking that we are not making any progress. But the reality is that Nina's body is so different from what it was 6 months ago. It is absolutely incredible!

I have mentioned before that we have seen progress in her fine motor skills, her attention, her cognition. But the difference in her walk and gait, well, those are astounding! So here it is, I will show you before and after pictures. And remember, this is the difference from before the surgery, and now 6 months later. Absolutely incredible!

I want to show you the difference with no braces on, because that is how you can really see what her body is doing and how it has changed.

BEFORE
Her heels could not touch the ground. She was very high on her toes.
 Can her heels be any higher?

AFTER


 Can you believe these are the same feet?
 And she can even tap the floor with her heel! No toes, just heel!

As far as the surgery goes, the scar is hard to see.

BEFORE

AFTER

The following videos, however, make me emotional. The difference in walk and gait is absolutely incredible! Six months, it has been only 6 months!

BEFORE

AFTER

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