Transitioning to Kindergarten

It feels as if the baby years are officially behind for my rascal. My "baby" will be transitioning into Kindergarten, and already we are celebrating some of the transitions, while trying to hold on a little bit longer in other ways. Yet, can we really hold on?

Preschool years are now behind us. This last year, Nichole had the most incredible teachers. She was in an inclusive classroom, with a regular teacher and a special education teacher. Her special ed teacher was...fantastic! She believed in Nichole, she saw her potential, and she loved her. She went above and beyond and was able to look at things from my perspective - the parent's perspective.

I received a note from her teacher and her aide, both of them expressing what a treat it was to have Nichole. They believed in her potential and really loved her. We were blessed to have them be a part of Nichole's life.

Nichole  is now attending summer school getting ready for Kindergarten. She loves it, and she really likes her teacher, so I feel like we will have a successful year. it also helps that her teacher is my friend and she knows my concerns with Nichole so well.

Another new development is that Nichole was recently diagnosed with speech Apraxia. While I wish I had pushed for this sooner, now we have pretty "tried and true" resources to work on her speech. It might sound crazy, but already I feel she is doing better.

And a celebration, we are done with pull-ups! One day we ran out of pull-ups and I got her in underwear. She was fine all day. She is a rascal, she had us, she conned us for who knows how long. So we are done! It is so nice not to worry about this anymore, and perfect to have her potty trained before starting Kindergarten. She finished preschool with big girl undies, and so far, no accidents at school!

Defining Moment {a guest post}

 

 

When Bridgie was born there was for me a very real and transforming moment.

 

In the middle of the night, in a dark hospital room, my husband asleep on the pull out sofa thing, my newborn daughter asleep in the bassinet.

 

It had been a long day that culminated with a beautiful baby girl with sparkling blue eyes and the cockeyed glance.

 

 

The big girl version of the cockeyed glance

 

 

 

Baby Bridgie brought something extra with her.  No not a chromosome or a medical issue. 

 

Bridgie brought peace.

 

 

Bridgie brought a long overdue peace to my hardened, burdened, confused heart.

 

 

It was instant that feeling of peace.

 

I saw her little face all swaddled up as they brought her to my side after the c-section.

 

 

I knew two things in that instant.

 

Down syndrome and peace.

 

 

They took her away and I marveled at what had just happened as I lay under layer upon layer of warmed blankets feeling the warmth of the morphine deep in my veins.

 

 

My human brain tried with all it's might to tell me to scream out, what's wrong with my baby!!!????

 

 

Over and over this scenario played out within me.

 

 

And each time, my heart answered with peace.

 

 

Late that night in the dark of the room.  I tried to play devil's advocate with my heart.

 

 

Down syndrome, what will it mean.  Will she live?  Will Erin and Eoin accept her?  Will she burden them? 

 

I tried with all my might in my post-morphine mind to make myself think logically.

 

Down syndrome is bad, right?

 

We don't want this, we can't do this, right?

 

I tried to push past the lucidity of the peace that enveloped me.

 

I tried to analyze this with my hardened, burdened, confused heart.

 

 

I succeeded in working myself up.

 

I mean, sweaty palms, mind racing, heart palpitating, legs shaking, cold nervousness in my veins, the taste of bile in my throat.

And as fast as I brought it on, it was gone.

 

The peace, the peace I could not fight.

 

What I knew was that I loved this little girl ferociously and nothing else mattered.

 

In this day there were many defining moments.

 

The loudest, most clarifying, and pervasive moments were the unspoken.

 

The nurses who said nothing about our baby girl who obviously had Down syndrome.  They knew it we knew it and we said nothing.

 

Looking back, I was selfishly keeping her and her potential diagnosis to myself because I did not care or want to hear what they thought or had to say.

 

I already knew what I needed to know.

 

LOVE.

 

There was the unspoken by my husband reeling in his own way.

 

Not a word of negativity, not a word of nonacceptance.

 

Only Love.

 

Somehow, we mangled through that first night each in our own cocoon.

 

Feeling alone, feeling scared, feeling what we did not exactly know.

 

What we do know is that we were not alone.

 

  

***

About the author: Cindy Bryl, a mother to three perfectly crazy kids, tries to lead a simple Christian life in the suburbs of Maryland. Teaching her kids to have great manners, to be kind, and walk in the steps of the Lord while maintaining her sanity by continuing her own walk with the Lord through triathlon training. For more rantings and ravings about her 'five family' please check out her blog: Life is simple, it's just not easy.

A Treasure that Brings Joy {a guest post}

When our sweet Elizabeth Clare entered the world on August 10, 2011 and we heard her cry, I wept and wept and wept. I wept in joy and in relief. After losing our dear Andrew Jon two days after his birth at 26 weeks gestation almost two years earlier, this was a very hard pregnancy. I was always waiting for the bad news to come. Waiting for the doctor to come in after one of our many ultrasounds and say, “I’m so sorry...” Waiting anxiously to see if we would hear the baby’s heartbeat at the regular check ups. Waiting in fear that I would lose this baby too. It was so hard to trust in the Lord and to wait in hope. To hear her cry was the greatest sound in the world!

I knew something was wrong when two nurses came in the next morning and told me they had talked to my doctor and that I should call her once my husband and I were together. Not able to wait, I called right away. “What do you see when you look at Elizabeth?” my doctor asked. And I started to cry. I told her the things I’d noticed that morning as I took the hat off to get a good look at my beautiful girl...small ears, different shaped eyes, something different with the shape of her head and her nose...yes, the nurses had noticed those things too, along with some other physical markers that were consistent with Down Syndrome and they wanted to do a blood test to be sure. More tears. Tears for the dreams I didn’t even know I had for her that now seemed to die with those words. Fear of the unknown; what will her life look like?...will she have friends?...what kind of care will she need?...tears. And then, immediately after that I heard the words: “She has been chosen for us and we have been chosen for her” and “I’m going to learn to love in a whole new way” go through my mind and heart.

I called a dear friend from the hospital. Getting her voice mail, I left a message. She called back a little while later saying, “When I heard your message I thought ‘The Lord loves the Lichty’s so much. They have a Saint in Heaven and a saint on earth!’” And I was so blessed by her beautiful response. Her joy and excitement helped to ease my fears. She knew, in loving their precious son with special needs, what a gift we were being given.

When my husband Joe, got to the hospital later and I told him about Elizabeth’s diagnosis, his response was, “I don’t care, she’s my daughter!” He immediately picked her up and snuggled his precious little girl. We shared the news with people by saying that Elizabeth was born with an “extra chromosome of love!” And it’s so true!

We love loving her! Her older brothers delight in delighting her. She makes us all better and we want to be better for her! She has brought a new joy and a new spirit to our home. We don’t know what the future will hold or what challenges we will face, but that is just as true for all of our children. Our job is to love her and help her reach the potential God has for her, just as it is for each of our children. When we say our family prayers more than one brother always prays, “Thank You God for Elizabeth and the joy she brings us!”

How do I respond to people who share that we “have already been through so much?” and “Why did this happen to you?” I tell them, “We are the blessed ones! Don’t feel sorry for us! We love her so much! We can’t imagine life without Elizabeth!”

Yes, there are doctor appointments and specialists. And there is therapy and interventions through the school district. Yes, there are days of anxiety and fear. Yes, there are questions and stares. Yes, there is all that...but there is so much more focus on the life and the love and the joy and the laughter that makes our home and our family complete. Don’t be afraid! We never lose when we choose to love!!

We wouldn’t trade Elizabeth for anything! I can’t look at her and not smile. Her life is a gift, a precious gift, and she is going to teach us about life and love and God in ways we can’t even imagine! Thank You Lord, for the treasure You have given us in Elizabeth. We are blessed!
________________________________  
About the author: Shelly Lichty has been married to the love of her life, Joe, for twelve years.  She is a homeschooling, tea drinking, card playing, girlfriend loving, mom of six children.  The oldest five are boys-Lawrence, Michael, James, Philip, and Andrew-who is in Heaven and their youngest is sweet Elizabeth.

Down syndrome {on her 5th birthday}

It seems unbelievable that five years ago Down syndrome entered our world when Nichole was born. That day replays in my mind every year on her birthday, fresh as if it has been not too long ago. It is no cliche, but rather a truth when people say, "kids grow up too quick" and "time goes by so fast." I was so scared.

If only I could redo that day, when I saw my baby come out of m, her back side displaying her thick neck confirming that she in fact had Down syndrome. As if in slow motion, I saw her naked back side coming to me, ready to rest on my chest. Down syndrome about to be handed to me, not my baby, but a condition. I wish I knew then what I know now.

This little girl has come to steal my heart. She has given me purpose, passion, and direction. She changed my life. This child of God entrusted to us is a gift. Yes, there is something about Nichole, something that touches my heart and spirit in ways nobody else can.

Her celebration of life touches my heart and makes me wish I celebrated with the same gusto she does. I wish I could feel the joy she feels, and I wish I could love unconditionally the way she does.

Nichole spent her birthday sick. And although she had a rough day, being sick, with a fever, and congested sinuses (not to mention the worse attendee at her own party). She still managed to expand my heart, and make me fall in love even more.

As we had lunch together she announced, "I help you" and she stirred the eggs. She also told me several times, while pointing at her head, "I sick." Because she loves the attention of her dismay.

She is my angel, and she holds my heart. I am who I am today in a large part because of her. her influence is making a mark, and her contribution to her mom, her family, and those that know her is already significant. This little girl is in the business of changing lives, and I have the honor to be her mother.

I live you rascal, with every ounce of my being!

I Need Her

It is 2:00 am when the cell phone vibrates under my pillow reminding me to get up. In a swift motion I swing my legs around and glide out of bed, barely moving the covers. My husband sleeps soundly and so does my one-week-old baby, Nichole, who sleeps propped up in her car seat in our room. I pause at the door and stare at her small shadow. Slowly I turn and exit the room, closing the bedroom door behind me. It is time.

Across the hall from my room, I lock myself in the bathroom. I sit on the cold tile floor and pull the blue Medela breast pump from under the sink. The bottles, cups, and tubes are ready, waiting for me. I am full of milk and ready to relieve some of the pressure.

I plug myself to the milking machine, the rhythmic swishing begins, and within seconds, the floodgates are open. A steady stream that never fails every time I am attached to the pump. 

Why? Why?

Why!!!

Why does it have to be my baby? Why do I have to be the mother of a child with Down syndrome? Why!

It never fails. Every time the pump is to my breast I cry and grieve over Nichole's diagnosis. During the day, I have enough distractions to keep me from giving in and losing myself in despair. But at night, at night I can cry as much as I want. Everyone is sleeping. Nobody knows.

***

My article I Need Her was published today at SpecialNeeds.com. CLICK HERE to continue reading.

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The Prize: A guest post

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!

What I Would Tell You: A guest post

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.
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 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.

Down syndrome: What we would tell ourselves

On behalf of the IDSC for Life:

This Wednesday is World Down syndrome day. What an honor to be a member of this family!

What To Say/Not To Say When Your Friend's Baby Has Down Syndrome

Down syndrome is the most common genetic variation present in the womb. Sure, there are other genetic conditions, but Down syndrome is the most common condition. This is the reason why it is one of the prenatal tests most commonly available and offered to expectant mothers.

Over 6 years ago, our dear friends received their first-born daughter into the world, and she was born with Down syndrome. This is where I wish I could tell you that I knew exactly what to say to them when Jennifer was born, but I did not! In fact, I turned out to be a lousy friend. At first, I avoided to talk about it with them because I did not know what to say. Later, when I finally said something, well… I probably should have kept my mouth closed! Fast-forward 2 years after Jennifer’s birth, and our daughter Nichole was born with Down syndrome. You can read about that story HERE.

Now, I do want to point out here, that every person is different. Our personalities, our outlook in life, and our backgrounds do affect the way we handle and perceive things. The most devastating comment I received came from a parent of a child with Down syndrome. This was the exact same comment that was the most encouraging and uplifting to our friends. As you can see, there is no magic formula to know what to say or not to say. However, there are some statements that are better not said, as well as some encouraging words that can be shared.

Don’t say:

-God gives special children to special parents.

First of all, this is not true. We are most likely struggling inside trying to make sense of what just happened and this comment puts on a lot of pressure and high expectations. We do not have more love, acceptance, or compassion compared to the family that just gave birth a room away from our own. 

-I am sorry.

It is okay for you to feel sorry; you probably don’t know much about what it is like to have a child with Down syndrome. Hey, I felt sorry when I had Nichole because I knew so little about it! However, to hear other people say it was devastating. It reassured me that this indeed was really, really bad. What is most important, as I look back to those feelings, I can tell you there was nothing to be sad about. Be sad that Nichole had a heart condition? That is different. Be sad that her liver seemed to be failing? That is different. But sad that she has Down syndrome? No, not at all! On the contrary, there is so much to celebrate!

-I will pray for God to heal your child.

This is a big one! Please do pray for healing of medical conditions. However, do not pray for God to heal a child from Down syndrome. My daughter with Down syndrome was sick due to a liver condition, God helped her body work properly and we have never had to deal with this again. Down syndrome is not a disease, it is not an illness, it is a genetic condition. Genetics determine the color of our eyes, our hair, what our nose looks like, the size of our ears, how tall we will be. People are not “sick” with Down syndrome any more than you might be sick over your frizzy hair. God says that we are fearfully and wonderfully made, he knitted us together in our mother’s womb, and His works are perfect. God does not make mistakes.

Do say:

-Congratulations!

 Every life is worth celebrating.

-If it is a close friend, it is okay to ask, “How are you handling the diagnosis?”

-Tell the parents how beautiful their baby is! Babies with Down syndrome are some of the most beautiful babies! And they just melt in your arms. 

-Treat and talk about your friend’s baby with Down syndrome the same way you would if the baby did not have Down syndrome. 

-Say you are available if your friend needs to talk about anything. You can admit that you don’t know what to say, but you are available.

Edited to add: I am grateful for our friends that extended grace to me even as I said the wrong things. I hope that I have extended the same grace to comments that have been made to me. I cannot expect people to know what to say or have the same level of understanding that I do. So be assured, a true friend will not hold a comment made with good intentions against you! We are all learning together!


Do you have a child with Down syndrome? Is there something that was said to you that was inappropriate? Is there something that was encouraging? What do you wish someone had said to you, or what do you wish people had kept to themselves?

If you do not have a child with Down syndrome, I hope this is helpful to you. Really, when we say we love Down syndrome, we really mean it! I mean look at my little rascal up there, how could you not be smitten?


Linked to:
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Teach Me Tuesday
On Your Heat Tuesday
Titus Tuesday
No Ordinary Blog Hop
On, In, and Around Monday

Women Living Well
Word Filled Wednesday
Works for me Wednesday
Winsome Wednesday

My Favorite Posts of 2011

Photo Credit

Amazing how fast a year goes by, but then you look back and realize that much has happened. I would describe 2011 as a year of transition. It started with great discouragement as we were unsure what was next for our family (a process that had begun since September of 2010). In March we candidated at a church (my husband is a pastor, in case you didn't know) and we accepted the new position. Andy finished as the associate pastor in our former church in April, and a few days later Nina was having major spinal surgery. We moved in late May and the girls began school (all of them) in September. Throw in there trips, family gatherings, my sister's wedding, life and oh boy...that was a lot in such little time!

In light of that, I thought I would share my favorite posts from the year. You can click on the title and it will take you to the post.

January

Nina's Anniversary: This was after one year of Nina being home.

February

Becoming Your Child's Advocate: I still have much to learn about how to be an effective advocate for my girls, but more and more I learn how to do it appropriately and with good results, keeping the passion and emotion under control.

She Is Not a Baby, Treat Her Like a Big Girl: I have much to learn about Cerebral Palsy, but many times I am Nina's greatest challenge to overcome as I do too much for her.

Turning 30: What else can I say, my reflections on a "milestone" age.

March

Why Adopt a Child With Cerebral Palsy: Self explanatory

A Season of Lent: This is where I share my heart about wanting to live my life to honor God. it is not about Lent, but rather this relationship I have with my Savior, and how much more I want to know Him.

Down Syndrome Has Changed Me: This is a personal letter I wrote to my daughter Nichole.

What Did He Say?: Before her surgery, Nina took a class at the hospital to know what to expect. In this class she was given a stethoscope to play with and she listened intently. Nina shared with us the doctor and me what she had heard, her message from Jesus.

April

All of April is about Nina's Cerebral Palsy, her surgery, recovery, and such!

May

Adventures in Moving: Moving with 3 girls ages 5 and under, 2 of them with special needs, was quite the adventure!

June

The Same Team: One of my very favorites! It was a rejected article for a magazine but I still wanted to share it. it is about marriage and working together when you have little kids.

July

Nina's Best Friend: We got to meet Nina's bets friend from the orphanage, Oksana, and her family. They have become such dear friends!

August

We were transitioning in the new place.

Septemeber

The Brodys In This World: The story of a young man with Cerebral Palsy from our church.

Brody's Light: A touching follow up story to my first post about Brody and how he is sharing God's word.

Down Syndrome and Abortion: An honest post where I speak to the women that have had an abortion, and those considering one based on a diagnosis on Down syndrome. Possibly this post has been shared and read more than any other post or article I have ever written.

Could I Do More?: A common mothering question, but when you have children with special needs, this is an even greater "fear."

October

Road Marker 321: If you only read one post, read this one. I spent the month of October and most of November sharing about our journey as our daughter was born with Down syndrome. This is the first of 24 posts, the "prologue." And the most intimate piece of writing I have ever written.

November

Two Years Ago, Why We Adopted: Top 10 reasons why we adopted.

This Man: The love, respect, and admiration I have for my husband.

Why Moms Need Friends: Top 10 reasons why moms need friends.

December

Christmas, Presents, Lights, and All That Matters: Self-explanatory in top 10 style.

A Hope and a Future: What Nina's future holds because she has a family and is an orphan no more.

First Steps Take Courage: contrasting my 3 girls and what their first steps defined.

Live With Us Forever?: My take on the possibility of having my child with Down syndrome live with me forever.

Okay, I know that you won't click on every single link, but, did you have a favorite post here?

Also, do you have a  favorite post from your blog? Share it with me so I can stop by and visit for a while!

Live With Us Forever?

Funny how the mind works. When Nichole was born, some of the first questions I had about her future were things I never really questioned with Ellie.

-Will she ever get married?

-Will she have a job?

-Will she live with us forever?

Nichole brings such joy to our lives, that Andy and I joke about making her sign a contract where she promises to indeed live with us forever. I mean this girl touches our hearts in ways that blow us away! I have found her some nice boys that could make great husbands, and I have promised their moms I will take good care of their boys if our kids do end up falling in love.

If I had known then what I know now...

Life with Nichole is beautiful. I thank God for this little rascal and for Him to entrust her to our family. Even Ellie tells us we don't get Nichole forever, when she is 18 (and you know, she will be a grownup then) she gets her. Ha!

To think we once assumed that her diagnosis of Down syndrome would bring limitations and hardships to our family...Ha! She has instead expanded us! Our hearts, our understanding, and our acceptance. She has brought a measure of love that comes directly from God. 

And she is fun! So much fun!

Here is a little glimpse. Nichole loves to make videos of the 2 of us, and this is a video we made a few weeks ago when she finally learned how to kiss!

 Nichole also has a thing for imitating Ellie, because she adored her big sister. Anything Ellie does Nichole is sure to follow. Ellie likes to sing with Nichole and they were showing me a song. Pardon the distraction of the camera.

Yes, we are smitten with this rascal, and sometimes even Nina cannot help but give in to Nichole's charm...sometimes. These 2 have a fierce competition going on, sound like sisters?

Linked to:
Women Living Well
Word Filled Wednesdays
Works for me Wednesdays
Winsome Wednesdays
No ordinary Blog Hop
Holy Experince

First Chapter Finished

Well I did it, I finished sharing the beginning of my personal journey with Down syndrome. I suppose if it were a book, this would have been the first chapter (although it would have been quite long!). The story, obviously, does not end here since Nichole is 4 years old.

This is something I would like you to know. Nichole is a light in my life! She is the daughter I always wanted, I just never knew it. I would not change her, Down syndrome and all, for anything in the world. Yes, she is exactly who God created her to be. She has been my teacher of life, she has been my joy, she has been the source of endless love. I really want you to know that.

I wrote 24 posts sharing what it was like to deal with the diagnosis of Down syndrome. Hopefully, I was able to communicate with you how God met me in a dark place of brokeness, and how He used Nichole to change my heart.

If you did not get a chance to read, you can start by reading my first post or "Prologue": Road Marker 321.

At the end of each post, you should see a link to the next entry.

If you did get a chance to read. What did you think about it?
If you have a child with Down syndrome, were you able to identify?
If you do not have children with special needs, was this helpful to you?
Were you ever in a situation where you had to chose love?
Have you ever been in a hole where God pulls you out and holds you in His arms?
Have you experienced flashes of color in your life that you never knew before?

I would love to hear from you. I got to share my heart with you, and it would be an honor to hear your heart too.

So Much Love

Every test Nichole had at the hospital came back negative. Yet, one test would lead to other tests, as her blood work continued to show abnormal liver activity. During the following days, as we waited for Nichole’s several tests to be done, I became obsessed with reading “Gifts.” I cried with every story. I underlined words and phrases that spoke to my heart, and I wrote on the margins of the book. 

Andy, on the other hand, was reading all he could on-line about the different tests and possible conditions doctors talked about.  We laughed, as one of the doctors asked Andy after discussing a certain test that would be done the following morning if he was a doctor too. 

“No” Andy replied, “I just have a lot of time in my hands to research.”

The fact that my husband was so knowledgeable of what was taking place medically gave me incredible peace. I did not have to worry about Nichole’s health. I was working on finding my new dreams, and expanding my hope for the future.

“Honey, listen to this” Andy said to me one afternoon as he clicked on a link for the National Association of Down Syndrome. “There is an article here called: If People With DownSyndrome Ruled the World.”

“Is it good?” I asked.

“Affection, hugging, and caring would make a huge comeback” he read.

“I like that!” I responded.

“The words “clean” and “fun” would be used in the same sentence” he continued.

“Oh! I really like that!”

“Weather would be the only essential news item.”

“Hey! I exclaimed, “That is the only part I care about too!”

We laughed. I sat by him and we read the article. We laughed. We smiled. And we agreed, the world would be a much better place if people with Down syndrome ruled the world.

“If God showed up right now” Andy said, “And offered to take Down syndrome away from Nichole, would you chose that?”

“I don’t know,” I answered truthfully. “I think I would want to right now, because it is so new, so different. Yet I feel that if I made that choice, I would be missing out on something big. And I would regret it. What about you?”

“No. I want her to have Down syndrome” Andy responded, “God intended for her to be this way, and I would not want to change that. God has great plans for her.”

“Yeah. I think He does too.” 

In the middle of the night, I walked back in the dimly lit corridors of the hospital after depositing 2 fresh bottles of milk in the fridge. The night nurse approached me.

“Hi Ellen, how are you guys doing?”

“So far so good. They still can’t find anything wrong with Nichole, so I guess that is good”

“Yeah…you know, I noticed that book you are reading.”

“The book “Gifts”?”

“Yes. I hope you don’t mind, I flipped through it a little bit.”

“That’s okay”

“I just wanted to say…that you are very lucky.”

“I am?”

“Yes you are. My husband works with adults with disabilities, and well, we have fallen in love with people with Down syndrome.” She smiled, “We have been trying to adopt a baby with Down syndrome, but there is a huge waiting list.”

“Really?” I asked surprised.

“Yeah. We have looked at international adoption too, but it is so expensive, we just can’t afford it now. We have 2 kids, and we are done. The only way we would try again, is if we had a guarantee our baby would have Down syndrome.” She laughed at her own statement, “I know! It sounds crazy! But you are lucky. You have been given a precious gift. And you will have so many blessings in your life because of her. There is just something about Down syndrome, I don’t know what it is, but it really is special.”

“I think I am beginning to learn that.”

“Well, I don’t want to keep you awake any longer; I just wanted to say that.”

“Thanks…actually, do you mind if I give you a hug?”

“Not at all.”

I hugged the night nurse. I did not catch her name, and I had not spoken to her much that evening, but she had given me a gift too. She was so genuine. She did not see my child as broken, or as a mistake. She knew she was perfect. And she knew that the gifts that would come to us because of Nichole, were gifts she wished she could have in her life too.

After 6 days, we left Mayo’s hospital. The diagnosis was no more than an immature liver that was just taking a little bit longer to learn how to work. We had medicine and we would be back in 2 weeks to do more blood work.

We picked up Ellie at my mom’s house and spent the night with her and my sisters. Nichole was held, kissed, and loved.”

The next morning we drove back, happy to be making our way home. It occurred to me that just 3 weeks before; I had taken a broken baby home. I had been devastated about her diagnosis and had wished for my life to be different. This time around, I was coming home to celebrate life as a new mom. Love had quickly taken me, all of me.

Flashes of color I had never seen, began to make their way to me. I was mesmerized by the colors, taken by their beauty. 

How was it possible, that I had gone for wishing for my baby to die, to knowing that I desperately needed her? How was it that in 3 weeks, my baby girl had taught me more about unconditional love than I had ever known in my lifetime?

This was not the road I would have chosen willingly. Yet, now that we traveled that road, I knew, just as Andy knew; that I wouldn’t want it any other way. And like Andy, I had been surprised by joy. Joy, and peace, and love. 

There was open, unknown space before me, but I would feel the warmth of my baby girl as I held her close. She would lead the way. I wanted to begin the journey. A journey into a beautiful wildness. It would be a journey full of love. So much love.

The End

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
A New Family
She Has Down Syndrome 
Nursing 
She Has a Broken Heart 
Fooled Them All 
My Mother's Arms 
Tears Flow 
She Is My Own 
I Chose Love: Part 1
I Chose Love: Part 2
Flashes of Color

Flashes of Color

As we drove to Mayo’s hospital, Ellie talked. She talked about how excited she was to stay with Grandma Chachi for a few days, and the fun things she would do with her aunts. Andy and I listened mostly, distracted by thoughts of Nichole and what the prognosis would be.

 At times, we drove in silence. I thought about Jennifer, Ellie’s best friend with Down syndrome. A little girl I had watched for a year and had fallen in love with. It amazed me how little I ever thought of her diagnosis. Jennifer’s life was beautiful.  My baby, like Jennifer, was God’s precious gift.

“I don’t think I can do life without her.” I finally confessed.

“I can’t either” Andy responded.

At St. Mary’s hospital, my mom waited for us in the lobby with my sister Luisa. She hugged me tight and kissed me.

“We will take care of Ellie, don’t worry. And we will be praying. We have everyone praying at church too.”

“I know” I said, “We are grateful for all the prayers.”

We made our way to the third floor of St. Mary’s hospital. They were waiting for us. On Nichole’s crib laid a set of diapers, wipes, and a cozy blanket. The nurses were friendly and caring. They made small talk, smiled, and offered to help us get comfortable for the night. We realized, from their attitudes, that even if Nichole had biliary atresia, which was serious and potentially fatal if not treated, it did not mean she would die. Tests would not begin until the next morning. We had an entire evening to sit and wait.

A “Child Life” specialist, a sort of social worker, came into the room and offered several things to make us more comfortable. Among those things, was a laptop, so that we could check our e-mail and keep in touch with our family. We accepted the offer and she was back within minutes with a computer.

The first thing Andy did was research “biliary atresia.” He wanted to know what tests would be done, and what those were for. While he was glued to the laptop, I was glued to the pump, making sure my baby would have milk.

“I think we need to find out as much as we can about Down syndrome,” Andy said as I fed a bottle to Nichole.

I had checked out every book on Down syndrome available at our local library. All of those books had been depressing. Pages on all the ways my baby would be different, inferior, and broken. Words describing all the things that could go wrong, and the many challenges we would face. Every time I had tried to read one of those books, I had closed them after a few pages and cried.

“On-line?” I asked.

“Yes, on-line, but also we should go to Barns and Noble and get some up to date books. Not those outdated ones from the library. I think that is all garbage.”

“Okay” After a pause, I added, “Maybe we can go while Nichole takes s a nap.”

Later that evening, we walked into our favorite bookstore; a preferred place for our date nights. For the first time, we searched for the “special needs” section. When we found it, we were amazed at the hundreds of books on the shelves. 

I have been so blind at the world around me. I never really noticed children with special needs, but there are so many…

Autism. Aspergers. Cerebral Palsy. ADHA. ADD. Sensory Processing Disorders. Turette’s Syndrome. Spina Bifida. Deafness.

The list went on.

Finally, squeezed among the many books, I noticed the words “Down syndrome.” I pulled books out of the shelves, trying to decide what I wanted to read. I did not want lists of doomed futures. I did not want guides on how to teach my child gross motor skills or speech. I was looking for hope, for dreams, for a bright future.

Andy walked to me and handed me a book.

“I think this is the book you need to read,” he said.

On the cover, a naked baby was held by the strong hands of a father. White letters in contrast with a gray- blue background that surrounded the picture read, “Gifts.” Underneath the photo, the subtitle, “Mothers Reflect on How Children With Down Syndrome Enrich Their Lives.”

I quickly flipped to the back cover, “Having a baby with Down syndrome is not something most parents would willingly choose. Yet many who travel this path discover rich, unexpected rewards along the way.”

I could feel my heart beating faster. I opened the book to the foreword and read the first line. “Your life will have flashes of color you never knew possible.”

My life will have flashes of color I never knew were possible.

Those words, so real, carried with them great power. The hope and dreams I was searching for were contained in that sentence. I held the book close to my heart. In the middle of the aisle at Barns and Noble, I kneeled down hugging a book. Tears showing up once more, I closed my eyes in an effort to make them stop. Yet tears kept pouring out. And through my tears, I smiled. Because for the first time, I was not crying because I was sad, I was crying, because I knew my life would have flashed of color I never knew were possible.  I was crying, because I had been given a gift.

Next: So Much Love

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

A New Family

She Has Down Syndrome 

Nursing 

She Has a Broken Heart 

Fooled Them All 

My Mother's Arms 

Tears Flow 

She Is My Own 

I Chose Love: Part 1 

I Chose Love: Part 2