Friday, April 27, 2012

The Prize: A guest post

10 What are your thoughts?
By Ann Bremer

At 38 years old my odds of having a baby with Down syndrome were one in 180.  In other words, if you gathered 180, 38-year-old pregnant women in a room, only one would be awarded a life altering prize.   I never win anything, why would I expect to win this?

In the middle of my pregnancy when I received a phone call saying some blood work had come back indicating that my odds of winning were now 1 in 110, I did what any good ostrich would do and put my head in the sand.  There would be no meeting with a geneticist, no ultrasound, and no amniocentesis.  There would only be the remaining months of an easy pregnancy occasionally interrupted by a new awareness of women at the mall who had been the unfortunate winners of the Down syndrome lottery.

Very early on a December morning two and a half weeks before my due date, I awoke with indigestion which came and went with predictable frequency.  Four hours later, after a harrowing ride through rush hour traffic and an unplanned drug-free delivery, my husband and I heard the words, “It’s a boy!”

When they laid my sweet bundle on my tummy, I examined him for signs of Down syndrome.  When I saw that he looked like my other babies I breathed a sigh of relief.  But the doctor and nurse spoke in hushed tones, and then the nurse let me know she suspected I was the lottery winner.  Thirty minutes later the specialist concurred.  My little boy had Down syndrome.  I didn’t want this prize.  Alone in my bed that night, I did what any hormonal, exhausted new mother of a child she didn’t want would do and sobbed uncontrollably.

“God chooses special parents for special children,” well meaning friends and acquaintances told me.

Baloney.

Parents of children with special needs don’t come to their positions with the talent and temperament required to meet those needs.  Like me, they were minding their own business living average lives when they were plucked from obscurity and called to do more than they ever imagined they could.  Motivated by a fierce love, they rose to the occasion and earned the moniker “special parents” through hard work, worry and self-sacrifice.  Special parents aren’t chosen, they’re made.

My son was only hours old when I was presented with a long list of possible medical issues.  Forty to fifty percent of children with Down syndrome have heart defects; five to fifteen percent will develop celiac disease; five percent have gastrointestinal malformations; five percent will have seizures; five percent will have hypothyroidism; and one percent will develop leukemia.  My son’s heart was pronounced good, and his gastrointestinal system was given the all clear after he pooped and peed properly.  I assumed there would be no more unexpected statistical anomalies, ignored the list of potential problems and got down to the business of loving my baby.

Few of my son’s needs achieved the status of special, most being of the average variety.  As expected, his development was delayed and milestones were missed.  What was entirely unexpected was the undiluted joy I felt as his mother.  His presence in my life, in our family, killed my aspirations to perfection.  With nothing to prove, I felt a freedom I had never before known.

When my son was just two years old, we defied the odds again when he joined the one percent of children with Down syndrome who develop leukemia.  Upon hearing the diagnosis, I did what any good mother would do and cursed.

The standard treatment for boys with acute lymphoblastic leukemia is three years of chemotherapy.  For three years I watched as my little boy struggled with the side effects of the poison we pumped into his body to keep him alive.  I cried when the drugs reduced my normally sweet child to a crying, screaming mess.  By the end of treatment, he was extremely weak with legs like spaghetti noodles, but I rejoiced because he was alive!  I remembered the mother who cried the night he was born, the one who didn’t want him, and was happy to find I no longer recognized her.

Today my son is nine years old.  He likes bluegrass music, chocolate cake, and prefers running to walking.  When I was pregnant with his younger brother and sister, I did what any good ostrich would do and put my head in the sand refusing all prenatal testing.  But this ostrich was not afraid.  This ostrich was well informed choosing the coolness and darkness of the sand over the heat and bright lights of a world that thinks winning the prize a second or third time would be a tragedy.
_____________________________________________________________________

 Ann Bremer is a wife and mother of 6 children. She is one of the contributors to the book "Gifts: Mothers Reflect on How Children With Down Syndrome Enrich Their Lives," her essay is titled, "School of Life."

I first met Ann through her essay in the book Gifts. Later, when Nichole was just a baby, I had the pleasure of meeting her and her family. Ann's words are powerful, and both of her essays have touched my heart. Ann, keep writing!

Wednesday, April 25, 2012

One Year Post-Rhizotomy Gait Analysis

11 What are your thoughts?
Yesterday Nina had another gait analysis to check on her progress one year post-rhizotomy. Last year she needed her walker, this time, she walked all on her own.

Please excuse the out-of-control nervous giggles. She really has no control once she gets started and she knew she couldn't fall because of the "space stickers" she had on.

video

video

She also got to do some walking with her braces on. It is simply incredible that this girl is finally walking!

video



I think it is fun to see the "gear" Nina had to wear.



Besides the "space stickers" Nina had some sort of "microphones" on her legs so they could hear her muscles "talking." Now I don't know the real terms for what these are, but the explanation they gave to Nina makes sense to me! They really do get a lot of information about what her body is able to do by "listening to the muscles." You can see in her leg what those gadgets looked like.

In a couple of weeks we meet with all the doctors at Mayo Clinic and we talk about what is next for Nina. Most likely we have another surgery in the future. Nina's spasticity was pretty bad and even after cutting 60% of her nerves, she is still tight. One thing at a time. For now, it was just fun to see the doctors wow at the difference in all her measurements from last year.

The on PT was not thrilled with Nina's braces. We don't like them very much either. She mentioned they don't fit Nina well and had some recommendations on what to do until we can get her different braces. So we shall do that too.

And I want to say THANK YOU to all of you that have kept Nina in your prayers as she had the surgery and as she has learned how to walk. Your prayers and support have been an incredible gift. Really, we are so grateful for you.

Monday, April 23, 2012

Do I Matter? Do I Make a Difference?

20 What are your thoughts?


I opened my closet and studied the options dangling from my hangers. What was I going to wear for our family photos? Certainly not a formal dress, a t-shirt, or the styles from a decade ago that somehow still hang in my closet.
I am not a fashionista. Ask my trendy 18-year-old sister and she will tell you she would love to revamp my wardrobe. I really don’t think much about clothes and I have no reservation taking the hand-me-downs from friends. So why exactly did I feel a lump in my throat? Why did I feel emotional over my limited attire? Was it because Andy teased me that all our clothes were dirty and the piles of laundry spilling from our rooms and bathroom were proof of my incompetent housekeeping job?
I grabbed two shirts and presented them to my friend who was taking our pictures. She picked the one that matched best with the girl’s clothes.
“I just don’t ever buy clothes for me.” I self -consciously said to Melissa. “I only spend money on clothes for the girls. They are the ones the really need them since they are growing and wearing them out. I just wear jeans and a t-shirt most days.”
In that moment, I could have walked to my room, closed the door and cried. The emotions felt so raw that I knew this was not a simple case of, “I have nothing to wear!” 
So what was it then?
The truth is I felt embarrassed.  My laundry had never been piled that high. I was swimming in a sea of dirty clothes, dirty dishes, and unplanned menus, struggling to stay on top of necessities, like clean underwear, or a peanut butter and jelly sandwich. Melissa was visiting, she is a Children’s Ministry Consultant and she is good at what she does. She had come to do training for us and we learned so much from her. She is making a difference in the lives of children across the United States by investing in the churches that invite her to come. My job, on the other hand, consists of my little home and there was evidence I was failing miserably with my maintenance skills.
As I opened my closet, I was really asking: Do I matter? Do I make a difference? Am I more than a mom and a wife and a housekeeper?
God I am failing at this homemaker thing, I don’t seem to get it. I honestly don’t even enjoy it, it is a chore. I need your joy to do the simple things of raising my family. Yet I know there is more to my life than cleaning and cooking and folding clothes. Help me to see what you see when you look at me. Help me to understand your plans and the season of life I am in right now. To embrace it with joy, to follow you wholeheartedly.
And it is in the moments of brokenness where I experience God’s love and compassion transforming my life. He sees me. The woman. Not the mom, cook, or house cleaner I see, but me. A 31-year-old woman that He created to have dreams and hopes and stories and ideas.The one that is right here and right now for a purpose.
Yes, what I do matters to my husband and to three beautiful little girls that have been entrusted to my care. I know that what my girls see happening within the walls of our home will shape who they become. A loving mommy in a ponytail, t-shirt and jeans can mold little hearts and help them grow in love, compassion and acceptance. My interactions with people at the church and with friends matter. My involvement with the girl’s school can make a difference.
I am thankful that God does not tire of reminding me of truths I can easily forget.
“What about we go to TJ Maxx and we get you some nice shirts.” Melissa proposed the following day.
And so to TJ Maxx we went, and I found some cute and stylish shirts. My sister will be proud of me.


Linked to:
Playdates With God
Sharing His Beauty
A Handful of Heart
The Better Mom
No Ordinary Blog Hop

Saturday, April 21, 2012

Do you get my posts via e-mail?

4 What are your thoughts?
If you are a subscriber to These Broken Vases, have you received my post updates? I will be the first to admit I am not very savvy when it comes to feedburner. But I am not sure you are getting the e-mails when there is a new post. To fix that (if it needed to be fixed I suppose) I did some changes to the feed in hopes to solve this problem.

If you are a subscriber, have you been getting e-mails with the new posts?

Enough housekeeping! Thanks!

My Husband Likes Crafts Too

9 What are your thoughts?
Yes, Andy enjoys doing crafts. Except his crafts consist of using saws and drills. We have large fenced-in back yard. We love it and so do the girls. Last summer the fun outside consisted of a sprinkler and small pool. We figured the girls would like a swingset.

For Nina and Nichole, a swingset is not just swings and a slide, it is real physical therapy. They love it, they want to be on it, so they learn how to move their body, they learn balance, how to hold on to the swing, and how to climb.

And so Andy started crafting away!



 Ellie was a great helper. She was very proud of the part she played arranging the boards on the deck.

 Once the swings were up, we had excited little girls. Nichole did pretty well holding on.





 There is a bench where we can even have some snacks or play "restaurant."




Isn't it cute? Not only is it fun, it is a "tree house" and it even has little flower pots that the girls are excited to fill.

Next time the girls ask dad to do a craft, he will have no excuse, I mean, using water colors has to be easier than building a swingset....right?

Friday, April 20, 2012

What I Would Tell You: A guest post

6 What are your thoughts?

By Julie Keon

I sensed someone watching me as I comforted my daughter after a particularly traumatizing dentist appointment at the Children’s Hospital. I looked up and saw you staring at us from across the waiting lounge. I didn’t pay much attention, as I have grown accustomed to the curious eyes of onlookers. Our daughter was born 7 ½ years ago and after an abrupt lack of oxygen at birth, she changed the course of our lives forever. Perhaps, our lives unfolded exactly as they were meant to — they just didn’t unfold in the way we had imagined or planned.

I talked to my daughter, kissed her and hugged her. I was giving her a brief break before putting her through the next traumatic experience of the day ~ the car ride home. Having cerebral palsy is the least of her worries but this condition can turn a car seat into a torture chamber.

I stood up to gather our things, my daughter in my arms, and it was then that I noticed you were holding an infant. It was difficult to know for certain how old she was. I knew immediately, though, that you were one of us. I knew that only recently your life had changed drastically and you sat here in this Children’s Hospital wondering, “How did we get here?” I should have recognized that shocked stare because I once had it, too. And I assume that the man sitting next to you, looking equally tired and shocked, was your husband.

I made my way toward the doors and as I passed you, our eyes met and I smiled at you. You smiled back and for a moment I knew that you knew that I understood.

If I could, I would tell you although you might not believe it right now, you will be okay. I would tell you to dig deep within yourself because you will find the strength and resilience somehow and it will surprise you. I would tell you to honor your feelings and let the tears flow when they need to. You will need the energy for more important things than holding in emotions.

I would tell you that the man sitting next to you might cope differently and he might even want to run the other way. But I would tell you to hang on because he is scared and he really doesn’t want to leave you. I would tell you to look after yourself so that you can care for your daughter. Don’t underestimate the power of good nutrition, exercise, sleep, supplements and an empathetic therapist.

I would tell you that grief will come and it will confuse you because how can something that brings such joy also bring such sadness? I would tell you to let people into your lives to help you. Our children really do require a village to raise them. Access all of the services and resources available. Find someone who can learn how to care for your child so that you can have breaks and so you and your partner can go on dates… even little ones like a twenty minute stroll outside holding hands, sharing wine on the deck or even catching a movie.

I would tell you that you know your child best of all and no matter what you are told by the doctors and other professionals who will be a part of your life, YOU know the answers. You will teach them about your child. At times you will question the validity of your intuition but after a while you will become profoundly aware of how accurate your gut feelings are when it comes to your child.

I would tell you not to be a martyr. Caring for your child will require tremendous focus and unimaginable energy and it can burn you out and make you sick when you least expect it. I would tell you to let your guard down along the way so that you can stay healthy in your mind and spirit.

I would tell you to seek out other mothers like yourself. This is, indeed, the road less traveled and you will feel very alone along the way especially in the company of healthy children and their parents. Yes, you will feel very isolated but know that we are here. Sometimes you have to look a little harder but we are here. You can find us online, in support groups and wandering the halls of the Children’s Hospital.

I would tell you that you will know far too much about the human anatomy, neurology, gastro-enterology, feeding tubes, pharmaceuticals, and so on, than a mother should ever have to know. I would also tell you to do some research to inform yourself but be very careful not to be overwhelmed by the internet and all of the information available to you. Having some trust in what your child’s specialists tell you can be very grounding. Other mothers and fathers of children like ours can be a wealth of information.

I would tell you that this isn’t an easy life. It is tough: there is no doubt about it but you are very capable and the rewards are great. You may never see your child graduate from university, walk down the aisle or give birth to your grandchildren but you will feel pure joy when your child laughs for the first time at the age of 3 years and 8 months. You will celebrate the moment when you connect with your non-verbal child. You will call your spouse at work to tell him that she has gained 4oz. because weight gain is always a struggle with our children.

I would tell you that you will have to witness procedures and surgeries and suffering well beyond what any parent should ever have to bear. But, I would tell you that you will be courageous and comforting because your child will be experiencing far more suffering than any child should ever have to endure.

I would tell you that your life will not resemble the life you had planned. It will be as though you landed in Holland instead of Italy but after some time, you will adjust the dreams you had and this reality will be normal to you. You will dream new dreams.

I would tell you that you might find yourself staring death in the face during close calls. You will be asked to fill out DNR (Do Not Resuscitate) forms and although you might make decisions to not resuscitate in the event of a cardiac arrest, when the moment arises, you will panic to think that it could all come to an end. And I would tell you to not feel guilty in the darkest moments when you pray to God to take your child if it would mean the suffering would end. This might horrify you but know that your love for your child is so great that at times you will believe that death would be a blessing.

I would tell you that others will not get it. They can’t. This is a very unique and complex journey on all levels. We cannot expect anyone to get it. And I would tell you that people — the cashier at the grocery store or your insurance broker or even your hair stylist — will say stupid things like, “God only gives these special kids to special mothers” and “God will only give you what you can handle.” You will nod and smile but eventually you will look them right in the face and tell them that those simple maxims are a bunch of crap.

I would tell you that imagining your future will be bittersweet and may involve a Plan A and a Plan B. Plan A will be what you will do if your child outlives the predicted life expectancy set forth by the experts and Plan B will come into play if they do not. You will catch yourself casually discussing your future with the code phrases of Plan A and Plan B.

I would tell you that grief will creep up on you after years have passed and you least expect it like at a wedding when the father and bride have their first dance or when you hear a birth announcement. It will also creep up on you when you see yourself in a new mother who is just beginning this journey.

I would tell you that you will recognize her because she is you from 7 ½ years ago. And you will want to run to her and hug her and tell her that everything will be okay. You will want to save her from the pain and the hardship and the unknown.

But I would tell you that when you find yourself sitting at the Children’s Hospital and you see a new mom and dad who are just starting this journey, you smile at them and walk by as they have their own path to travel and it will be different than yours. It may be longer or shorter. It may be more or less complicated.

I would tell you that her searching eyes are looking for some sign that she will survive this. And you, smiling as you pass, with your child arching all over your shoulder, will let her know that yes, she will survive this and may even thrive.

© Copyright 2011 by Julie A. Keon. All rights reserved.
______________________________________________________________
 Julie Keon started out as a Social Service Worker in the early 90’s eventually working as a Certified Birth and Postpartum Doula assisting couples as they navigated through childbirth and the early weeks at home with a new baby. Since becoming a mother in December 2003, Julie’s career has changed and evolved. Although she continues to educate expectant couples through her unique prenatal courses, she also offers workshops for women who have experienced difficult or traumatic births. As well as being a casting artist, Julie is a weekly columnist for the Whitewater Cobden Sun newspaper and is a regular contributor to various health newsletters and publications. Her interests include psychology, health, travel, writing, and staying vibrant and resilient in the midst of a sometimes very stressful life while hanging on to a sense of humour. Julie is in the process of writing her first book, which is an extension of “What I Would Tell You.” Developing workshops and presentations for those who work with families of children with special needs as well as for parents themselves, is another item on Julie’s agenda.
She is the mother to 8-year old, Meredith, and shares her life with her husband, Tim. They reside in the Ottawa Valley in Ontario, Canada.

Visit Julie's website.

Thursday, April 19, 2012

Creating Family

10 What are your thoughts?
Before I became a mom, I was familiar with the phrase, “It takes a village to raise a child.” I sat through many baby dedications; I stood and prayed committing myself to help raise the children being presented to God. Every time, after one of these baby dedications, I would also say a prayer of thankfulness. I grew up close to my mom’s family, and I have countless memories of my grandparents, my aunt, and my uncle, as well as the extended family. It was not only my parents who raised me, but a group of people that loved me dearly and invested in me.
When I became pregnant for the first time, I was saddened by the fact that we did not live close to family. Somewhat I felt like my children would miss growing up surrounded by their grandparents, aunts, uncles, and cousins the way I had. The little phrase “It takes a village to raise a child” seemed to show up unannounced on those hormonal days of pregnancy where I wondered if I would be a good mom or fail miserably. I felt alone living away from my family. I wondered who would help us as we raised our child.
On a Sunday morning, a woman approached me at church and said, “When you have that baby, do not hesitate to call if you need anything. I will be glad to help.” With that offer, this woman challenged me. I had committed to help raise some of the children that were now running around in the church foyer but I was not a part of their lives. I looked at some of the mothers and saw how tired and spent they were. What struck me most, was that there were many willing to help. I had been willing and had offered many times to take some of these kids for a couple of hours. So what was keeping these moms from asking someone to step in and give them a break?
In the weeks to come, and after much prayer, I decided that I needed to create my own “family.” I knew I would need help being a first time mom, and I knew I would sometimes need a break. My husband and I were also committed to keep our weekly date nights and we would definitely need someone to watch our baby.
From the day Ellie was born, I surrounded myself with this new family. I knew that help was a phone call away, and I knew that Ellie was in loving arms while Andy and I went out to eat or spend time at a bookstore. When Nichole was born and we dealt with her diagnosis of Down syndrome, our “created” family was there for us, walking along side. When we adopted Nina and took on her diagnosis of Cerebral Palsy, they were right behind us, supporting us, watching our children, giving us a break.
All three of my girls are blessed by the many people who love them. They have many grandparents, some biological, and some by heart. As I look back at the special people in our lives, at our family, I am thankful that God, who cares deeply about us, brought people into our lives to love and support us.  Family has taken a new meaning, because it does not only encompass the ones that we are related to by blood, but also the ones that are created.

(Thank you Henely's and Heitz's for becoming our family. We love you and miss you tremendously!) 

Linked to:

Wednesday, April 18, 2012

Make a Caption

3 What are your thoughts?

This is one of my favorite places. There is just something about the Japanese garden in our town that speaks "story" to me. It was fun to take Ellie there and see the same "story" awaken in her. "mom, let's pretend we are princesses in an enchanted forest!"

I just smiled.

I love looking at this picture, and thought maybe it needed a caption. Help me out here, what would your caption or title be for this picture?

Does it inspire "story" in you? What story would that be?

Sunday, April 15, 2012

Iluusion by Frank Peretti giveaway winner!

0 What are your thoughts?

Congratulations Sabrina! You are the winner! I will e-mail you so I can get your book in the mail.

Saturday, April 14, 2012

Determined to Dance

7 What are your thoughts?
There are times when I watch something like this and feel overwhelmingly grateful to be a part of the Down syndrome community. It is impossible for me to look at a group of people that sport that extra chromosome and not feel moved by the depth of love and joy that is communicated in their expressions and interactions. My heart feels full and I feel God whisper, "These are the shades of colors I promised you."

Oh sure I am a writer, and I hope to "make it" some day; but do you want to know what my dream job would be?

After all, I am also a dancer...


Determined to Dance is a documentary I will be excited to watch,

A portrait of young dancers with Down syndrome and their families. The video also includes rehearsal footage and actual performances.
Portrait-in-motion of a troupe of young adult dancers with Down syndrome. Led by Kenny,  irrepressible Elvis fan, fanatical storm-chaser/weatherman, wannabe Romeo, and an awesome, dedicated dancer, they prepare tougher pieces for larger audiences, but the number that always has fans on their feet in tears? "There's a place for us...somewhere."

Friday, April 13, 2012

A Blog Party?

28 What are your thoughts?
I found out that there is something in the blog world called a "Blog Party." Maybe you know what this means, but I admit I am a writer, not a blogger. The more I learn about blogging the more I learn this is true. However, I could not pass away the opportunity to connect with other bloggers that have children with special needs.

I would recommend that you start reading this essay: Road Marker 321. It is the first of a series of posts I wrote about receiving and dealing with Nichole's diagnosis. It is raw, but it is real. Becoming a special needs mom sometimes welcomes us with tears and sadness. Thankfully, we find great beauty in unexpected places.

But let me tell you a little bit about our family:

Andy and I were married 9 years ago. We were young and we have done a lot of growing up together. He is an incredible man.

We were only 24 when we became parents to one pretty sweet baby girl. We loved being parents and we thought we were pretty stellar at this job, so we signed up for it again. The problem was, our second baby girl greeted us with an extra chromosome, which means she has Down syndrome. She rocked our world. Dealing with her diagnosis was one of the hardest things I have ever had to do in life. However, I quickly realized that we had been given one of the greatest blessings in our lives. As a matter of fact, Nichole changed us so much that we adopted a little girl with Cerebral Palsy just 2 years ago.


Our daughter with Cerebral Palsy had a rhizotomy a year ago at Mayo Clinic and her life went from "she will never walk" to now walking independently! It is absolutely incredible! You can read about that journey here.

Feel free to look around and learn more about our family.

Lastly, I just have to share their pictures with you!

I hope you stick around for a while. You can follow with google connect or subscribe to receive my posts through e-mail.

And if you blog about special needs, please leave me a message and share with me about your family and your blog.

And if you have no relationship to the special needs community, I would still love for you to share about you and your blog. I will stop by and say hi.



Ultimate Blog Party 2012

Brokenness Became My Normal: A guest post

1 What are your thoughts?
I was born “broken”.

I came into the world on March 9, 1979, weighing just over two pounds. My mother had developed preeclampsia and I arrived several weeks earlier than anticipated; I was so tiny that my father could fit his wedding band around my arm. Among the medical problems that I endured, I developed hydrocephalus (or the buildup of excess spinal fluid around the brain). Almost immediately I was transported to Columbia Presbyterian Hospital in New York because they had a pediatric neurological department that could treat me. It was there that I underwent surgery to have a shunt implanted in order to re-route the wayward spinal fluid and relieve the pressure on my brain.

Interestingly enough, the number one song on the Billboard charts that week was “I Will Survive” by Gloria Gaynor. I see this not as a coincidence but rather a direct sign from God, even though by the time I discovered this fact I had long since grown up. But it didn’t surprise me in the least, because despite everything I endured as a result of my premature birth, I ultimately did survive. I learned to crawl, walk, and run. I attended school. I made friends, and enjoyed birthday parties. I learned to drive, graduated high school, and entered the workforce. I developed a passion for writing and photography, and learned that I see the world differently than others.

Different became my normal – and it is definitely good. Throughout my childhood and my life, my parents simply accepted my brokenness as our normal. Hospitals, neurologists, brain surgeries, and CAT scans were our normal. Dealing with annoying doctors and learning how to know when my shunt was malfunctioning was our normal. And through it all, my parents loved me and always took care of me.

One very touching example of how my parents truly embraced my brokenness right from the very beginning is a story my father has told me many times over the years. As he tells it, I was in the process of being put into the ambulance to be transported to Columbia Presbyterian in New York when he was met in the hallway by both of my grandmothers. They had not yet seen me and didn’t know all of the details surrounding my arrival, and were eager for details. As my father was walking with them, he very matter-of-factly announces, “They’re putting Sabrina in the ambulance now to take her to Columbia Presbyterian.” Several seconds pass by before he realizes that he’s still walking but that my grandmothers are no longer walking beside him. He turns around to see them standing several feet away, with looks of confusion on their faces.

“Sabrina?” they ask him. “Who is that?”

“That’s what we named the baby,” my father answers them. “Her name is Sabrina.”

I have to admit that I love hearing that story because it shows me that despite all of the fear, uncertainty, and complications surrounding my birth, my parents still took the time to choose a name for me, and embraced me for the person that I was – brokenness and everything. 

It’s now been more than twenty years since my last shunt surgery, and although the potential for a problem is never far from my mind, I don’t let it scare me. Instead, I’ve embraced my brokenness and the beauty found in it and have begun to seriously consider writing a book about my experiences. After all, God gave me this life and my passion for writing, and now I want to share both with the world.
__________________________________________________________________

Sabrina Steyling is a writer and blogger from New Jersey who also enjoys reading, photography, and scrapbooking in her spare time. Her articles and essays have appeared in several local publications and on Patch.com. Connect with Sabrina on Facebook and Twitter, and also check out her website on Wordpress.

Wednesday, April 11, 2012

Ramblings of a Mother

1 What are your thoughts?
 
Nichole is into self-directed feedings. It means she tells me what and when she wants to eat and I willingly oblige. Some might say this is a bad idea when it comes to parenting, but most of the time her wish is my command. While this might eventually be a disaster, she is communicating with us so clearly that it is hard to refuse. 

“Bre? Tella? Mommy peez?”

You want some bread with Nutella? Sure thing little rascal!

Which brings me to the fact that this girl loves her Nutella as much as I do. I think the choice of snack is considered scientific evidence that she got the extra chromosome from me. I will also argue that she looks a lot like her mama, especially when she is angry.  

Her love for Nutella has been discovered in the classroom. Often times teachers apologize for the Nutella smudges on her shirt. Fine with me, I have no problem licking her shirt clean. Okay, I don’t love Nutella that much.

Which brings me to school. Nichole is doing really well…most of the time. Nichole is in a special education classroom. It means that all the kids in her class have special needs. Her teachers have discovered that Nichole does not thrive in this environment. For example, Nichole does not handle screaming and loud very well (unless she is the one screaming and being loud). One of the therapists told us she can judge how the day is going by Nichole’s reaction. If Nichole runs to her  and asks to “play” it means it has been a rough day with the other kids and she wants out of there. If she is happy and smiling, it means it has been smooth sailing and all kids have been cooperating.

Which brings me to next year plans. We are having an IEP meeting but we know for sure Nichole will be moved to a typical classroom.  Nichole needs the example from her typical peers and she needs to learn the ropes of school as we prepare for Kindergarten. As a mom, it is exciting when teachers see the potential in your child that you see. It is also reassuring to hear them say she can do this, she can be with typical peers and thrive in that environment (although safety is a concern with her, remember, she is a professional rascal even at her young age).

Which brings me back to the fact that she makes me proud every day. She is talking more, she is engaging more, and she is enjoying life.

I am head over heels in love with this girl.

What is it Nichole? You want some crackers? Sure thing little rascal!


Tuesday, April 10, 2012

Book Review: Illusion by Frank Peretti and GIVEAWAY

9 What are your thoughts?
After seven years, New York Times bestselling author Frank Peretti is back! On March 6th his new book Illusion was released and it is already making its way into the New York Times bestselling list.

From the back cover of the book:
Dane and Mandy, a popular magic act for forty years, are tragically separated by a car wreck that claims Mandy’s life—or so everyone thinks. Even as Dane mourns and tries to rebuild his life without her, Mandy, supposedly dead, awakes in the present as the nineteen-year-old she was in 1970. Distraught and disoriented in what to her is the future, she is confined to a mental ward until she discovers a magical ability to pass invisibly through time and space to escape. Alone in a strange world, she uses her mysterious powers to eke out a living, performing magic on the streets and in a quaint coffee shop.
Hoping to discover an exciting new talent, Dane ventures into the coffee shop and is transfixed by the magic he sees, illusions that even he, a seasoned professional, cannot explain. But more than anything, he is emotionally devastated by this teenager who has never met him, doesn’t know him, is certainly not in love with him, but is in every respect identical to the young beauty he first met and married some forty years earlier.
They begin a furtive relationship as mentor and protégée, but even as Dane tries to sort out who she really is and she tries to understand why she is drawn to him, they are watched by secretive interests who not only possess the answers to Mandy’s powers and misplacement in time but also the roguish ability to decide what will become of her.
Frank Peretti has crafted a rich, rewarding story of love and life, loss and restoration, full of twists and mystery. Exceptionally well written, Illusion will soon prove another Peretti classic.
I love to find a book that keeps me up late at night and is hard to put down. There is something about a good story that allows you to be a present observer as the story unfolds. Once I began to read, I was hooked!

If you are familiar with Frank Peretti, I would warn you that this is not a book with a Spiritual theme, but rather a mystery, thriller, and sci-fi book. While you might find some spiritual elements that come into play in the story (the main characters are Christians) this is not a book like This Present Darkness or Piercing the Darkness.

While I personally had a hard time following the explanation of Mandy's "translocation" in time as well as the details of how it took place, it did not in any way deter me from thoroughly enjoying the story. While it is not my favorite Peretti book, this novel is a great read.

You can visit Frank Peretti's website by clicking here.

On to the fun part...

GIVEAWAY!

The nice people at Howard Books publisher and Handlebar Marketing sent me a free copy of this book in exchange for my honest review. However, they also sent me an extra copy to give away!

I promise, this is a great book! And who doesn't like to win free stuff?

So this is how you enter the giveaway. Simply leave me a comment here and on Saturday I will announce the winner by using random.org. Make sure you leave a way for me to contact you if you win!

Ready. Set. Go!

Friday, April 6, 2012

Broken Pieces

2 What are your thoughts?
 The solid, untreated wood draws me in – so real, so present – a symbol of the great sacrifice offered on behalf of my sins.

Each thorn on His brow, each slash on His back, each drop of spit on His face, and the three nails that pieced His skin, all suffered to save my broken soul. His life offered in exchange for mine.

The earth trembled, the veil was torn, the dead rose to life.

Surely this was the Son of God.

With my broken pieces I run to Him; His open arms ready to embrace the daughter who easily forgets.

He breathes life into me, covers me with forgiveness, and lavishes me with unending and unconditional love.

A gift of life.

You paid the ransom for my soul. I belong to you.

Although I am made up of broken pieces, I offer those freely. All of them.

Take these broken pieces and make them into something beautiful.

Take these broken pieces and use them for your glory.

Take these broken pieces and change me.

I will follow you.

Wednesday, April 4, 2012

Drops of Time

5 What are your thoughts?


I hold my oldest on my lap first thing in the morning. She is long and skinny, yet somehow she still fits in my arms. She lets me hold her because she knows it means a lot to me, yet I know she would rather run around the house and play. I tickle her and attack her with a thousand morning kisses while she giggles and screams “Stop it mom! Your breath stinks!” I just want to have some time together. She really just wants to get away from me and hand me a toothbrush. 

As she squirms in my arms, I see her face. Really see it. I look into the eyes of a girl that shed the words “little” without me noticing. This little girl is not so little anymore. The realization makes me nostalgic. 

Suddenly I am thinking of water – running water –  a steady stream pouring out. So fluid. I am trying my best to keep it cupped between my hands, yet I can feel it running, slipping, streaming through my fingers. My little girl is growing up with each drop of time. 

We celebrated her firsts, and now I am reaching, cupping, scooping as much of her as I can before she runs freely with those lasts. And what if I don’t catch them? What if they slide through the tiny holes in the folds of my skin and I miss them altogether?

So I stop the tickles and the kisses and hold her as close as I can. I breath her in and feel how small she still is. I know she wants out of my arms, I know morning breath is a turn off. 

I let her go but the picture remains: the fluid water. I don’t want to miss it, not one single drop. These years I have with her are too precious to allow them to flow by without taking the time to splash in the water, to jump in, and to enjoy.

As I get up from the couch and walk toward the kitchen to get my morning cup of coffee, I feel little arms wrap around my waist. Ellie has come back for one more hug. I hug her back, thankful that she still has time for her mama.

“Hope you like coffee breath better.” I tease.

Ellie squeals and runs away from me, “Noooo!”

I smile. Maybe in a few minutes I will tackle her and let her choose what she likes best. I will be playful, present, and attentive today. I will make every drop count.
 ____________________________________________________________________


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Sunday, April 1, 2012

Responding to Your Comments # 7

2 What are your thoughts?
I figured out how to respond to your comments on the comment section. However, I realize that unless you subscribe to comments, you won't get to see if I responded, so I will continue to have "Responding to Your Comments" posts. However, if you do leave a comment, check back because often I will respond on the comment section.

Blog post: Spring Flowers

Any chance she wants to make some for our house too?
With all the comments like these we got, I wonder if Ellie is on to something here. Maybe she needs to start selling her art. She thought that was a pretty great idea. maybe we need to figure out how much each picture would cost and see how that goes. What do grandma's and auntie's think?

Blog Post: Courage and Determination

I noticed in the 2nd video you kept telling her to put her arms down. Is she keeping them out because of muscle tone issues or is she still somewhat afraid she is going to fall? I have to say though, she gets herself up quite well when she does lose her balance.
Yes, she does walk with her arms out. Sometimes she gets going and snapping her fingers on her left hand. I actually think it is cute because for every step she gives a "snap!" Because of CP (and because Nina's arms actually are affected with CP) when she walks the high tone does kick in and she is tense, so you see that in the way she uses her arms. She has to really think about putting them down and that is extra work.
I believe it is pretty typical for kids with CP to walk "with their arms" for balance until they feel pretty comfortable and balanced. However, I do see this as more of a typical "CP gait" for kids. 

Not only courage and determination, but CONFIDENCE!!! Look how far she has come from the little girl who would only say, "I can't!" to now the little girl who doesn't want to stop! YAY Nina! God is so good!
Yes! Long time coming but she finally has the confidence! And I have to say her teachers have played a huge role in that. The confidence is what blows us away many times even more so than the walking, she is just a different kid now.

Blog post: The Day I Called Poison Control

I adore the ladies at Poison Control. They are the sweetest, most helpful people on the planet. And I especially love how there is never judgement in their voice. Love them!!
Yes, she was so nice! For anyone wondering if you could be over-reacting, just call, they won't mind. Better safe than sorry.

BIG QUESTION - did it kill the ants?!
Most of them! I have dug through the dirt and have seen a few of them still around. Nothing like it was before so I think this is when we do the common fixes for the problem.
We have seen ant hills in our back yard, so I think by the end of the summer we will be your ant killing experts. Just wait and see.

Just for kicks, here is our planter. As you can see it runs the entire length of our large window. The dirt goes all the way down to the ground level. I had someone say ants don't go down that deep, but still. Imagine the colony of ants in there. I tend to exaggerate but this time when I say there were hundreds of ants there really were hundreds. it was disgusting and a little frightening. Now the staggering few will hopefully die soon.

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