24 Weeks Post-Rhizotomy

It is hard to believee that it has been 24 weeks since Nina had her SDR surgery. I have not done a very good job at keeping updates on how Nina is doing. I am not the type of person that notices gradual process and I think that makes it hard for me to be objective about the changes in Nina. My initial thought is that things are the same, and that Nina has not made much progress. But that is not true.

A rhizotomy does not only help with walking and gross motor skills. Nina's fine motor skills are actually very good. The only thing she really struggles with are letters. She cannot get letters. Even when tracing letters she has a hard time. She can color and cut, she can draw a picture of a person, and her overall fine motor skills are almost the same as most 5 year olds. Pretty incredible.

We spend a lot of time focusing on walking. A couple of times we thought we had finally turned the corner and we were on the road to walking independently. There have been 2 different times where Nina has walked around the house. On her own. No walker. No help. At school, she uses her wheelchair and her walker. The teacher mentioned that she is beginning to cruise a little and taking small steps on her own.

There are times when it is hard not to get frustrated and wonder if she really wants to walk. We are not sure what it is that will give her the final push so she takes off. But as Andy and I were talking the other day, we realized that Nina is walking. She is actually walking independently, but she has no idea. She thinks we are actually helping her. The last few weeks Andy and I have been holding the back of her shirt with a reassuring "I got you." And she walks. On her own. For as long as she feels us right behind her and feels we are touching her shirt, she can do it. The thing is, we are not doing anything at all, just walking right behind her. If we let go, she feels it and immediately falls and looses her balance. At this point it is not weather Nina will walk or not. She can walk. She is walking! This is a battle of her mind, of believing she can do it. This, I realize, might take a little longer. Yet, we are encouraged, because this girl can walk. She is actually walking!

Nina continues to walk on her toes out of habit. When she uses the walker we remind her of that several times and she gets those heels down no problem, even without her braces on. I am not sure if this is just Nina or if it is common after a SDR.

In a month we go back to Mayo clinic for Nina's 6 month follow up. We are interested to hear what the doctors have to say when they see her again and what their future recommendations will be.

I leave you with a video of Nina walking this afternoon. With Andy holding her shirt. It is not the best quality video but you will see what she does on her own.

Don't forget to enter your name for a book giveaway "A Good and Perfect Gift" by Amy Julia Becker. Just click here and go to that post.

And tomorrow starts Down syndrome awareness month, I am excited! Stick around as I share our journey with Down syndrome for the last 4 years!

GIVEAWAY and Book Review: A Good and Perfect Gift by Amy Julia Becker

After 3 days in the hospital, I was discharged to go home with my baby girl who had been diagnosed with Down syndrome. Any parent who has received a diagnosis understands how hard it is to deal with it at the beginning. There is a lot of grief and fear when you know so little about what the diagnosis will mean to your family and your child. On the way home from the hospital, we stopped at a Christian bookstore. I asked one of the clerks for their special needs section, which they did not have. I then asked for a book on special needs or Down syndrome, which they did not have either. Among their hundreds of books there was nothing that would help me deal with my baby’s diagnosis or that could give me hope and understanding. Thankfully, I was able to find the book "Gifts" at Barnes N Noble, which till this day continues to be my favorite book written by parents for parents, about Down syndrome.


A Good and Perfect Gift by Amy Julia Becker is the book I had hoped to find 4 years ago.

Written from a Christian perspective, Becker invites us to journey with her as she wrestles with her daughter’s diagnosis with Down syndrome. She shares the lessons learned and the ways in which God changed her perspective and rearranged her priorities. It is a beautiful, open, honest memoir of her experience dealing with her child’s diagnosis. Like the subtitle of the book says, it is about faith, expectations, and a little girl named Penny.

As a mother of a child with Down syndrome, and as a Christian, I was able to relate and appreciate Becker’s journey. I still find it incredible that somehow, with all of us being so different from one another; our children with Down syndrome teach us similar lessons.

The book is divided in 3 parts. The first 2 parts were my favorite “This Child” and, “Whoever Receives This Child, Receives Me”. Her last section “Just Penny” seemed to focus on her daughter and all that she is able to do. As much as I loved the first 2 parts, I wrestled with her last section. Penny seems to be a very “high functioning” child. So much indeed, that I had trouble “seeing” that she has Down syndrome. In fact, Penny seems to be “normal.” Penny’s speech, communication, and behavior at age 2 were outstanding, which made it hard for me to relate to her since my 4 year old is not there yet. And I felt guilty. Guilty that maybe I was not doing enough for my daughter. It made me wonder if her portrayal of Penny was accurate. It is other parents with kids with Down syndrome that will be drawn to her book, and I wonder if others will feel the same. Maybe not, maybe, Amy Julia’s book has simply challenged the insecurities I feel as Nichole’s mom

Overall, I liked her book. I appreciated her story. (I have edited this post)

Here you can download and read the first chapter of the book.

So, if you would like to get a copy of “A Good and Perfect Gift” by Amy Julia Becker, leave a comment! On Sunday (Nichole’s birthday) she will draw a name and Bethany House will send you a copy of the book!

And the winner is...

Remembering Her

A year ago today, I lost my grandmother.
Her life was beautiful.
I want to share with you the post I wrote the day she met with Jesus.

I Wish You Would Have Met Her

I watch intently as my grandma sits on her vanity bench, carefully applying her makeup. She puckers up as she puts her lipstick on and it makes me giggle. With one hand she gently touches up her hair while she bats her eyes at the mirror. She is beautiful, and I am mesmerized by her. She looks at me and asks if I want some blush for my cheeks. I nod and cuddle close to her while she applies the pink color to my face. I smile and gaze into her hazel eyes.


My grandma and I sing together in the car. We have our own special and favorite songs. She is the only one that never criticizes my singing. I feel so free, so accomplished. I love our car rides together.

Once, my grandmother gets pulled over. The officer approaches the car and my grandmother bats her beautiful eyes at the young officer. He shakes his head with a smile and tells her to “be careful.” He too, has fallen to her charm. I understand, for I am under the same spell and will do anything for her.

My grandmother sings on the stage at one of her recitals. She wears a long, velvety, maroon dress. A grand piano in the background and a full house of spectators, all gathered to hear her sing. She invites me up on stage and I hold on to her leg. I am so proud of her. And she is mine, my grandma.

We sit on her bed, playing “kitchen.” I think she has just as much fun as I do. I forget that she has a weak heart, and that she needs rest. We laugh together, and I offer to put on a play for her. I perform and she claps for me, she tells me it was the best act she has ever seen.

Sitting on a kitchen stool I watch as my grandma separates the yoke from the white. One smooth motion as she cracks the egg and separates its contents. She pours the yoke into a small china cup and dumps a couple of teaspoons of sugar and hands it to me. I enjoy the sweet treat while she continues to bake. Later, we make flour tortillas together. We like to spread butter and sprinkle sugar on them. It is our weekend tradition.

My parents say I am being disobedient. She asks, “Ellen, won’t you do that for me?” I do, I do in a light year second, no questions asks.

I grow up, and find that I cannot stop talking to my grandma about life. I want to know what she thinks, I want her advice. She listens, she asks questions, and then I lay down with her as we watch a Mexican soap. She needs some rest, but her presence is peaceful, comfortable, and familiar. She has always been there for me.

She greets my husband with a hug and a kiss. She tells him “Pero que guapo eres mi chulo!” forgetting Andy understands some Spanish and loving that she calls him handsome. She says she is proud of me, of how I have lived my life. I want her to be proud.

I see her sitting on a chair looking outside her window, watching as birds fly by. A rosary in her hands and her lips moving. I know she woke up early and has been praying for her family, for me, my husband, my girls. She has always prayed.

Today she has closed her eyes for the last time. She celebrated her homecoming in Heaven, the life of the party. I imagine her hazel eyes sparkled as she met Jesus. Her heart, always weak, has now been restored.

But I miss her. Oh how I miss her. I wish you would have met her; you too, would have fallen to her charm.

Dreaming Of Playgrounds

I love our school and our love the teachers. They have gone above and beyond to help Nina be as independent as possible. But there is one thing I do not like about our school. The playground.

Nina gets out there with her wheelchair, transfers to her walker and she is off...

Off to watch the kids playing. Climbing. Sliding. Running. She is watching. She gets to play with the rocks around the play structures. Dump trucks, shovels. Maybe a kid will play with her. Kids like her, they really look after Nina.

Ellie and Nina have recces together. Today I asked Ellie if Nina has fun. Ellie said Nina has friends that  play with her, but Nina cannot do anything because the play structures are just not...accessible. At all. Little rocks make it hard for a wheelchair or walker to get through, and no ramps make it impossible for Nina to have any independence. Out there, at school, she is completely dependent in other people. Either to stop and play with her, or to pick her up to help her go down a slide.

Twice a day, in the playground, Nina is disabled. It is a constant reminder that she is not like other kids. She watches, on the sidelines, or from the rocky ground.

Something needs to change.

Nina is not the only kid in her school with mobility issues. She is not the only child with special needs.

So I have been dreaming. I have been dreaming of  "Boundless Playgrounds." With ground where a wheelchair or walker can access the structure. Where there are ramps! Where there are railings! Where a kid with Down syndrome, Cerebral Palsy, Spina Bifida, Autism, and other special needs can feel just like one of the other kids. Where there is no divide between those that have challenges and their peers.

And I am determined.

You see, schoosl don't have a lot of money, so a playground is not at the top of the list. This is one of those situations where the parents need to step up, raise funds, and make things happen.

This is completely new territory for me!

And maybe you can help me sort things through.

Have you done this before? Have you raised money for a play structure in your school? Do you have connections? Do you know of places where you can apply for a grant? Dream with me!

I am really excited about this.

I am dreaming of playgrounds. Of Nina walking up a ramp right along with her friends. Going down slides. Her being independent! Twice a day... a time to look forward to being outside and being a kid! Yeah!

Let the brainstorming begin!

Photo Credit

Could I Do More?

There are times when I think about my children and I begin to ask myself, “Could I do more?”


This question seems to be more frequent when it comes to Nina and Nichole, since they have more challenges than typical children do.

With Nina, I find myself asking that question when it comes to her physical development. Should I stretch her more? Should we do more strength building exercises? Should we practice walking more often? Could I do more?

Yet, for the last 2 weeks, I feel this question keeps coming up when I think about Nichole. Could I do more?

I recently read a memoir about having a child with Down syndrome. (I will be writing a review soon, so stay tuned for that because I will also have a giveaway) I believe this is when this question began nagging at me, especially in the area of speech. Nichole’s greatest challenge is speech. We have communication going but speech has been slow…and hard. It does not help that Nichole is very shy and will not talk to anyone she does not know well. This basically means she only talks to her family.

At school, Nichole has taken her time to feel comfortable enough to talk to her teachers. She did not talk for quite a while. One of the teachers is fluent in sign language (2 members of her family are deaf, so she can sign as well as she talks), and they quickly realized that Nichole was responding better that way. Last Friday I was blown away when the teacher talked to Nichole and Nichole responded back to her with signs. Not just a sign here or there like we do at home, but I mean she actually said a sentence with sign language. Should I have pushed myself to learn sign language in order to give her better communication? Could I do more?

I also fall in the trap of comparing. As Down syndrome awareness month approaches, I am reading about children Nichole’s age and all they are able to do. How well they speak, how well they enunciate words, how well they sight read, how well they count. Could I do more?

Yet Nichole is Nichole. Her love for life makes us stare at her in wonder, with goofy grins plastered on our faces. She is great! How we love this child and how she has changed us!

The thing is, Nichole will speak. Sure, it will take her longer, but she will speak. Nichole will count, she will write, she will read, and she will excel in the areas where she is talented. We love her, and we are proud of her. So proud of her.

Could I do more? I am sure I could do more for all  my girls, but for now, I know I do what I can. And that is good enough.

It's Almost Time

October is fast approaching, which means it is almost time for Down syndrome awareness month. It will be the 5th annual "31 for 21 blog challenge." Bloggers are encouraged to blog every day for the month of October about Down syndrome.

I am not sure that I can commit to blogging every day. There are many bloggers who will be taking up this challenge, so the message will be shared. However, I do want to take the opportunity to share more about life with Down syndrome.

A few years ago my friend Gillian used the month of October to share her personal story. I loved her posts and reading about her journey. So this year I will be following Gillian's footsteps and writing about our journey with Down syndrome, starting with the pregnancy. We will see how that goes!

But like in years past, I invite any questions you have about down syndrome and I will answer those in a blog post. You can ask anything specific to Down syndrome or about our family as we do life with Down syndrome.

I am excited! Let the October fun begin!

Down Syndrome and Abortion

It is estimated that 90-94% of women who receive a prenatal diagnosis of Down syndrome have an abortion.


90-94%

The number is staggering.

But I will not point my finger at the women who have given their babies back to God without ever meeting them. Why? Because I understand. I know how they feel. Although abortion was never an option for us, I still wrestled with the exact same feelings these women had. I cried bitterly wondering why we had been given a “broken” baby. I didn’t want Nichole. Deep inside I wanted her to die. Can you believe that? I wanted my baby to die because I was so scared.

I was so scared.

So scared.

I had more questions than I had answers, and everywhere I looked Down syndrome seemed like a life sentence for my daughter…and for me.

When you are pregnant, and your baby has a possibility of having Down syndrome, doctors respond. Their response is not a welcoming response. They do not offer up to date information, or to connect you with other parents that have children with Down syndrome. They do not even talk about Down syndrome beyond their medical experience. No. What they talk about are more tests. They talk about a “choice,” and they talk about making that choice now! In addition, when they talk about Down syndrome and how it will affect your baby all we hear is a doomed medical condition in which our children will suffer greatly, because so many things could go wrong.

Before I had Nichole, I was ignorant about what Down syndrome meant. All I knew was a stereotype, and the stereotype I knew threatened my family, my unborn baby, and me. Professionals, somehow, seemed to confirm these fears.

Nichole’s birth is stained by the many tears and emotional distress I had over her diagnosis. That small extra chromosome had enough power to knock me down multiple times a day. I believed I was not qualified to be the mother of a child with special needs. I wondered, in my fear, if I would ever be able to love Nichole.

But love her is exactly what I did.

The fear, the questions, and the anxiety were moved to the side. I held a baby in my arms. A round faced, soft skinned, button nosed, bright-eyed face that captivated me. It was as if she had power over my heart. Love, joy, and peace became evident in my life; their aroma filled me with a strength I never knew was in me. She challenged me in the things I held as important, as valuable in life. Nichole transformed me.

Nichole is so much more than her medical diagnosis. She is so much more than any limitations she might have because of Down syndrome. She is an individual, with unique gifts, talents, and abilities. Her life has meaning, it is valuable, and it is hers.

I wish I knew then what I know now.

A sentiment that resonates with most parents of children with Down syndrome.

I wish I knew then what I know now.

Because what, exactly, determines the value of a life? The value of a child, any child?

Should the value of a child’s life be reduced to their academic performance? Then why is the life of a child with Down syndrome held to this standard?

Should the value of a child’s life be reduced to their medical conditions? Then why is the life of a child with Down syndrome held to this standard?

Should the value of a person’s life be reduced to the job they will have? Then why is the value of a person with Down syndrome held to this standard?

What makes our hearts beat? To love and be loved…unconditionally. To celebrate life. To experience joy in everyday moments. To have a heart that overflows with thankfulness. Isn’t this what we all long to experience in life? Wouldn’t the challenges be worth the rewards if we discovered that we had loved to our fullest, that we had been given unconditional love, and that we had celebrated life?

90-94%

Nevertheless, there is that 6-10% that wants you to know something about having a child with Down syndrome.

You will experience shades of color that you never knew were possible. Your heart will expand a thousand times over .Your tears and fears will be replaced with gratitude for the child you have. There will be so much love.

And there are more statistics.

If you want to adopt a child with Down syndrome in the United States there is a waiting list. A long waiting list. For every child in the United States born with Down syndrome that is given up for adoption, there are instances where 300 families have stepped forward wanting to adopt that child!

Each year hundreds of children with Down syndrome are adopted internationally. Hundreds!

Why? Because some families have discovered what it is like to live life every day, every single day with someone who has Down syndrome. And that life is beautiful. That life is rich. That life has been an unexpected gift.

You don’t have to be one of the 90-94%

You can be one of those who discover these precious mysteries in life.

We are living and loving life with Down syndrome.

(Note: Not all medical professionals approach a diagnosis of Down syndrome in a negative way. There are some who offer expectant parents resources and connections before assuming the pregnancy will be terminated)


If you want to know more about our journey and diagnosis with Down syndrome, you can read about Finding Nichole. An article I wrote for Thriving Families magazine where I share about becoming the parent of a child with special needs.

How Did You Find Us?

Once in a while I like to look at the traffic feed for our blog. It is interesting to me how some people end up here reading about our family. I especially find it interesting to see what are the "word searches" that bring people this way.

So these are a few common word searches that I find.

-down syndrome hands
-adopt cerebral palsy child
-down syndrome adoption
-stories about selfishness
-down syndrome statistics
-down syndrome abortion
-storm
-advocate
-stretching cerebral palsy
-spastic diplegia
-funny house
-chickenpox

It makes me wonder how people end up here. How did you find us? How did you stumble across "Stumbo Family Story?"

I am aware most of you reading along might be friends or family, but I am curious, what brought you here?

My Front Load Washer Stinks!

A good word to describe Andy and I when we first got married was: poor. Followed by: cheap.
When we first moved to Iowa, everything we owned fit into our car and our van. Every single thing. If you are wondering how you can get a bed in a car, you got the answer, we did not even own a bed. The great people of our church helped us out by providing us with furniture and appliances they no longer used or needed.

Among those items, was a washer without a knob. We had to use a knife in order to move the "dial" around and start the cycles. It actually worked pretty well considering how old it was. We tried to find a new knob but nothing worked. Our second washer came to us "broken." Nothing Kent (the senior pastor) could not fix. But it needed to be fixed, and fixed some more, over and over.

The washer was gone for good. We had an option, get the first washer back, or buy a new one.

And so it came to be that we bought our first appliance and became the owners of a front load washer! And I absolutely loved it! Everything about this washer was better than anything I expected in a washer. That is, until it began to stink! And I don't mean, "It kind of smells." I mean plug your nose, make disgusted face and exclaim, "This stinks! Disgusting! I can't put my clothes in there! Better to have them smell dirty than smelling like that! Guacala! Fuchila!"

I guess this is one of the biggest problems when it comes to front load HE (High Efficiency) washers.

We heard you are supposed to leave the door open when not in use. So we did. And it still smelled!

I started wiping it dry after each load and leaving the door open. It still smelled!

I tried getting in the rubber ring and wiping it. It still smelled!

So I did what any other reasonable human being would do. I asked my friends on facebook.

I did get some great tips. My favorite, was this link.

Some people run a bleach load every week with hot water. I did that, and it did help. Others prefer to go more natural and use white vinegar, which I suppose might even get those smells even better if you don't mind the vinegar smell.

And I found out that there are products for HE machines to clean them out.

When I cleaned that nasty, slimy filter...

I think the smell is better, but I am not done trying to find out what works best.

Do you have a HE front load washer? What do you do to keep it odor free?

Brody's Light

Photo Credit

A few days I shared with you that we all need "The Brodies In This World."

Brody is a young man with Cerebral Palsy and an intellectual disability that comes to our church and joins us for our Awana program. Last Sunday, we all worked on memorizing John 3:16. Watching Brody's excitement was something I cherish.

But the story does not end there.

Brody, who by this world's standards might seem broken, is spreading God's word and shining his light.

Brody is determined to share this verse with everyone he knows. Everyone. A few days ago, one of Brody's workers asked Sandy to please write down the verse Brody is trying to recite, so she can help him memorize and practice the hand motions. Brody meets with his friends, and he has something to teach them, a verse he learned at church. Brody gathers with his family, and he makes sure they all listen to John 3:16.

The word of God, His promise, His sacrifice, shared by a young man that some might believe has little to contribute to society. Brody's light is shining. He is sharing the message. People are listening. His contribution might just be one of eternal relevance, and I just picture Brody standing before God when he hears, "Well done!"

It humbles me. I have much to learn from Brody.

Down Syndrome In the 21st Century

Things have changed. Down syndrome is not the same it used to be. The extra chromosome is the same, but our understanding of the potential and capabilities of people with Down syndrome have changed. We are beginning to understand. They are educating us and showing us their potential. Those stereotypes of people with Down syndrome? They are being challenges every day. Down syndrome is different. What is your idea of Down syndrome?

Book Review: Horse Dreams by Dandi Mackall

Horse Dreams

by

Dandi Daley Mackall

a

Tyndale Book

Ellie is a 10 year old girl who dreams, breaths, and thinks of horses. She has been praying, begging, and crying for a horse for as long as she can remember. So far, begging and crying have not worked, and she is aware those options are out. Her only hope is that God will answer her prayer. Then an ugly Pinto Horse shows up. A horse that does not look like Ellie’s idea of her dream horse. But could this be the answer to her prayer?


Horse Dreams is a cute story about a little girl that loves horses. If your child is a horse lover, they will certainly enjoy this book! It is a great chapter book to read to younger kids or for older elementary age kids that are reading on their own.

Personally, I loved the fact that Ellie’s brother is deaf. His “disability” is presented as a normal part of life and being. Kids that are not familiar with sign language or special needs will learn that kids are kids first, and disability is always second.

I read the story to my daughter (who is also named Ellie). I thought the book would be a hit with her. However, she is not a horse lover and this book was too “horsey” for her. However, had this been a story about Ellie liking dogs, she would have loved it! Mackall knows how to write for children.

I received this book for free by Tyndale publishers in exchange for my honest review.

How Down Syndrome Affects Siblings: A Must Watch!

Have you ever wonder what is the effect that Down syndrome has on siblings? What will their relationship be like? Will they be a burden in the future? Will they wish their brother or sister was "normal"?

I want to share a video with you.

Meet Reagan, a young lady with a powerful message to share...about her brother Russell. I have had the pleasure of meeting Reagan, Russel, and their mom Adrienne. Reagan has always been a remarkable girl. Above average. She simply stands out.

I would recommend you grab a tissue.




And this is not the first time I have shared with you about Reagan and her brother Russel. Over a year ago, I shared an entry she wrote for a scholarship application, "The Effect Down Syndrome Has On Siblings."

I know you are out there, I know you have been given  a diagnosis of Down syndrome and you are not sure how that baby in your womb will  impact your other children. Maybe you have an infant of young child with Down syndrome and find that this is one of your biggest "fears." I know. I felt it too. Sometimes, it is hard to know what Ellie and Nichole's relationship will be like in the future. I don't know the details, but I know it will be good. Our kids with down syndrome...they really impact their siblings...in some incredible, contributing ways.

"Everyone knows he is my inspiration…everything I do, I do it for him…what inspires you?...I would not be who I am today if it weren’t for him…he gives me hope…and he gave my life direction…..I had no idea what I was supposed to do with my life…then I looked to him….then I knew…I feel nothing but gratitude towards him…and love…for giving me that…for giving me direction…I don’t know that he will ever understand how much he means to me…we have a special bond…I just want him to know that he gives me a reason to live…whenever I am going through hard times…I owe my entire reason for being alive to him." Reagan Bievenue

Let Reagan know how her video has impacted you.

The Brodys In This World

“We have a small church with good people and big hearts.”


Andy and I heard this statement when we first candidated at Orchard View Alliance. A sentiment that we now know to be true.

Although we are only a few, I love to look around on a Sunday morning and see the faces of our new friends. I smile every time. In our church, disability is normal. Much like in our own family.

Last night, we had our first Awana meeting of the year. Andy and I are learning the ropes of this Children’s Ministry, and along with Sandy, we are the “Sparks” leaders. And every time Sandy comes to church, Brody is with her.

Brody is a young adult with Cerebral Palsy. He has spastic diplegia, just like Nina. His voice is high and somehow it reminds me of Urkle from “Family Matters.” Yet once in a while when he speaks, his voice turns deep and you hear the man in Brody. Brody’s walk cannot hide the typical gait of CP, yet his servant heart does not stop him from carrying chairs around a room to make sure we all have a place to sit.

As we worked on memorizing John 3:16, Brody listened and participated intently along with the rest of the kids. One by one the children chose to go to the front of the room and try reciting the verse along with the hand motions we made up. After the kids had their turn, Brody asked to have a turn too.

Brody, a 20 something man in front of a room with Kindergarten kids. He did the hand motions, he said most of the words. I looked at Sandy, and I knew she was proud. Brody has become like one of her own kids. I then looked at the rest of the kids. It is beautiful when you see children look past disability. There is something touching when you realize that they are not affected by the prejudice of our society. Brody is just Brody, and they too, were proud of him.

Our church needs Brody.

Every church, every ministry would be blessed with the Brodys of this world. Yet, there are so many parents of kids with special needs that do not feel welcome at church. So many adults with disabilities that wonder if they will fit in.

But not last night.

Not Brody.

Our church needs Brody.

Does yours?

I Remember

The Sunday Paper cartoons greeted me this morning. Almost every one of them a tribute to 9/11. Silly, isn't it, how a cartoon can tug at your heartstrings. It is a sad day as we remember what took place, yet it is mixed with incredible pride over the courage of so many.

I was a college student, a Resident Assistant. There was only one TV in our dorm building, and it was on my floor. A poster hung over the TV that clearly outlined when it was okay to watch TV and when it was not. It was not okay to watch TV during morning hours and early afternoon.

As I closed the door to my room I could hear the television was on. One of the girls 2 floors above me was glued to the screen.

"I am sorry" I said, "But you cannot watch TV right now"
"A plane just hit the World Trade Center" she replied in explanation
"Sorry, a rule is a rule."
"Are you serious?"
"Yes. I am."

That is how clueless I was about what was happening that day, of what it meant. I just did not get it, I am not sure I was really listening.

As soon as I arrived in the main building, I headed to the computer lab. A friend of mine was intensely watching the monitor with quiet tears streaming down her face.

"Are you okay Tracee?"
"Ellen...we are being attacked...our country...our people..."
"What do you mean?"
"Terrorists flew a plane into the world trade center, a second one just hit"

I got it, I finally got it. This was not just a news report, this was history taking place. A devastating part of history.

I don't remember much more about the day. But I do remember returning to the dorm where several girls were watching the news.

"I asked permission to watch, I promise, Shannon said it was okay!" The voice of the girl I had asked to turn the TV off just minutes before.
"I am so sorry" I responded, "I really had no idea what was going on, I should have asked you more questions."

We watched. We watched in disbelief as the buildings collapsed. We watched. We watched as Firefighters, police officers, and civilians risked their lives for the sake of others. We watched.

Ten years later, and the pain seems greater. The significance of that attack more personal somehow. How many lives lost, how many tears shed by so many Americans?

Yet, how much courage.

I remember.

When "Back to School" Is Different

Another school year greets our family. It is the first time all my girls will be in school. They have clean, brand new backpacks, and their school supplies are neatly organized. They stand by the front door ready for me to snap a picture.


Ellie is ready to conquer the world. The smile she wears and the hop in her step are evidence of her self-confidence. I see that, even in her picture.

Nina smiles, but I see the nervous way in which she holds on to her walker. Her knees seem a little unstable today. She has been to her school before. She has met her teacher, her aides and every single therapist that will work with her. We spent time in her classroom making sure that she could get around in her walker or wheelchair. She has a cute special chair for extra support when sitting at the table, and one for sitting on the floor. We made sure that the right adaptive equipment was available so she could use the bathroom as independently as possible. Yet, her picture reveals that despite all the help she will get, the challenges that her body and mind will face at school because of Cerebral Palsy are scary when you are only 5 years old. I know there are other kids that are shy, or that feel very nervous. I know other children ask to go home or cry and cling to their parents. I get that, but this is different.

Nichole refuses to have her picture taken. She is angry. Angry that we have changed her routine. She does not want to go to school and demands to go inside the house again. She holds on to her cup of milk, her bowl of crackers, and the cover of one of her favorite shows while she cries in protest as we buckle her in the car. I wish she had the words to tell me how she feels. Even more than that, it makes me sad to think that she will not be able to tell me about her day when she returns home. If I could change one thing about how Down syndrome affects Nichole, it would be her speech. I know that other kids don't want to go to school. I know they too throw fits and kick and pout about it. I get that, but this is different.

My husband Andy and I take the girls to school. As we walk out the door, I want to cry. I know many moms cry too, I get that. But this is different. Two of my children have special needs. The complexities of their schooling careers are hard even for me to understand at times. I hold on to their potential, and to the fact that just like their big sister, my 2 “special” children also will shine, and pray that their classmates and teachers will see their light too.

First Day of School!

Today was the first day of school for all 3 of my girls! Ellie and Nina started Kindergarten and Nichole went to school for the first time ever. Oh what a day!

Ellie did fantastic! We are very confident that she will do well. We waited until she was 6 years old and we see what a great choice it was for her. Her self-confidence is so evident even as she interacts with her classmates and teacher. Four students in Kindergarten were selected to have a locker this year (because the Kindergarten “hooks” were not enough. Sounds like Ellie made quite the impression on her summer school teacher because she was one of the 4. Ellie recognizes that it means she has to be responsible and set an example. We are so proud of her. She came home with so many fun stories and telling us all about her friends, her teacher, gym class, recess, lunchtime, snack time, and every other part of her day.

Nina did well. Probably better than we expected but not great. A few days ago, the teachers and therapists wanted to meet Nina and get things ready for her. We went to the school and we figured out the outlay of the classroom for her to use her walker, and how she would use the bathroom. For adaptive equipment, we figured what was the best chair for her to sit in at school, and what was the best chair for her when the kids have to sit on the floor. During that visit, I realized that although the goal was for her to use her walker most of the time, right now she cannot physically do that, so Nina will be using her wheelchair for going from A to B. For example, Nina uses her wheelchair from her classroom to her gym class, and then she gets down and uses the walker. Same to go to recess and art class.

When we dropped her off, she told Andy she wanted to go home. She did not cry, but we knew she was very nervous (she is not in the same classroom as Ellie; Nina has a special class where half the kids have IEPs). When we stopped by later in the day, we saw her PT and she was asking questions about some of Nina’s behaviors. As soon as we heard some of what she had been saying and doing we knew she was trying to cope with her new environment and she was probably very uncomfortable and nervous. However, when I talked to her teacher at the end of the day she said Nina seemed to have a great day but was very tired and could barely hold her weight from all the walking she did today. I can’t imagine what it would have been like if her wheelchair was not there! She did not have stories to tell when we picked them up other than she had some great friends that were big like mommy and daddy. I really hope she starts interacting with other kids and not just with her teachers and therapists. However, as Ellie was talking about her days, Nina would chime in an “I got to do that too!” or “I liked gym class too!” As she gets used to her new environment she will do better and better. One-step at a time. We know she will do great!

Nichole had a HARD morning. People with Down syndrome are creatures of habit (many of them) you do the same thing, the same way, every day. That is how Nichole likes it. So when there was going to be no show while drinking her milk and having crackers after breakfast, she was not happy at all! Getting dressed that early in the morning? She would have none of that! Taking her picture? No way! She was angry! Once we got to school, her teacher grabbed her hand and told her it was time to get her friends that were waiting in line. The handing over happened so fast that Nichole did not realize what was happening as she walked along with her teacher. By the time we came to pick her up, so was holding her teacher’s hand and waiting for us. She had a good day.

This is one of the few times that you will hear me talk about what I dislike about Down syndrome, because mostly, we are living and loving life with Down syndrome. However, it breaks my heart that Nichole cannot tell me what her day was like. It makes me sad that she does not have the words to tell me what happened at school, what her teacher said, or what the other kids in her class are like.

That said, Andy and I had a great late morning, early afternoon time with Nichole, just the 3 of us. Nichole loved it! She kept telling us she wanted to go “play.” She signed and signed she wanted to “play.” When I picked up the girls I asked one of Nina’s teachers (who is also Nichole’s teacher) if they had used the sign or words “play” a lot that day. The teacher said that most of what they do they call it play. So although Nichole cannot tell me she liked school, I do get it, she liked to “play” and she wanted more. That makes my mama’s heart feel good!

These are the pictures outside our house. See, Nichole would have nothing to do with the camera!

 Not even if Ellie was in the picture with her!

 Ellie, on the other hand, did not mind the pictures.

 And Nina wanted a picture with her big sister too.