World Down Syndrome Day... March 21, 2014

3-21

Every year as this date approaches, I reminisce over the years and think of all the things my little munchkin Abrielle has accomplished, not only in the past year, but in the years of her lifetime... despite the things that most people would consider obstacles. Although she is not yet jumping over sidewalk cracks, she sure CAN run fast; and has more carefree playing than many kids I witness. Although she is not talking as well as other 4 year old children do, she IS speaking purposeful words, and understands everything I ask of her; in her world at 4 years old, that is considered a small miracle. As I have watched her grow, I can tell you that the time she takes to learn and process things is minuscule compared to the hurdles she has jumped along the way and something deep down tells me that time she takes is what allows her to be so joyful all of the time; I have learned from her...

Smiles rarely leave her face and NOTHING is really a big deal. Her time is like "Jamaica time, mon" and who doesn't enjoy that concept? Many years ago I had urgency about everything I did; I think MANY of us do; it's the world we live in. A world of instant gratification, instant credit, guaranteed whatever's we want everything now. Society has no patience for the concept "your time will come" or "take time to grow" we run around in a hurry and miss out on the beauty of our journey; I have learned from her...

She loves without conditions, she hugs for no reason and truly cares when you are hurting. She is the first one to come running when her older brother is crying, even when it's a tantrum just to give him a hug and a kiss on the cheek. She meets no strangers, as she offers love to everyone around her no matter the social class, color of skin or physical appearance; to her we are all the same; I have learned from her...

This little girl although the last of my four kids, came just in time, just when I needed smiles in my life, just when I needed a true direction and just when I needed to learn to appreciate the purposeful journey. I started my book when she was 9 months old and I know that if she had not arrived, I never would have taken the time to write it... I was too much in a hurry to be what I thought I was supposed to be; I had it all wrong; I learned from her...

                                        

We all need to slow down, we all need to take time to enjoy what surrounds us, we need to breathe in the journey and know that if we stop rushing everything and trying to have it OUR way.... GOD will show us HIS way. I promise that way is better, I am living proof; His gift of HER taught me that.

As I embark on the first leg of my speaking tour coming up in April , I wish I could bring her with me... for she has taught me so much and without her I am not sure I would be where I am right now. So today... on this 21st day of March... I celebrate the greatest gift in my life. Having three copies of chromosome #21 is what makes her so unique, and although she will not be able to wear the shirt I made her to school tomorrow because she is down for the count with pollen allergies, My baby girl WILL be celebrated just as all of these special human being should be each and every day. I encourage you to share this post and help me celebrate life.... in an extra chromosome kinda way!

                                              

xoxo

Shells

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It's Almost That Time Again...

As October quickly approaches, I am finding it hard to believe that my littlest peanut Abrielle aka, "Brie" will be celebrating her 4th birthday next month. My, oh my... how time does fly. I remember the day she was born like it was yesterday. She was born a month early and was the tiniest little munchkin I had ever held at a whopping 4.6lbs. I remember how anxious I was when I was told that I was being discharged before her because I wanted so badly to nurse her. Babies with Down syndrome typically have a hard time nursing but the benefits are needed even more, so I was determined to teach her how but I lived over an hour away. I was devastated because I knew if she began with a bottle, it would ruin her chances of learning to nurse and I would not be able to drive myself back and forth every 3 hours to feed her. This is when a nurse told me about the Ronald McDonald House. The chances were slim... because it is typically a place for more severe cases, but I plead my case and they agreed to allow me to stay for a week so that I could go to the NICU every 3 hours to nurse my daughter. I felt so lucky to have this perfect little girl whose only issue was that she had an extra chromosome and could not hold her body temp because she was so small, yet I also recall feeling guilty for taking up a space at this amazing facility that enabled mothers and father's who were fighting for their children's lives to stay close to their babies. I still remember some of those horrifying and sad stories; one mother lost her son while I was there and I sat with her at the dining room table and cried. As my week quickly went by, I told Abrielle every day that she had to hurry up and stay warm on her own so that Mommy could be with her, and every day she fought harder to do just that. One week after she was born, my little trooper stayed warm and we went home together; I was never a day without her. I knew at that moment, I had a fighter... and also how lucky I was to be taking my baby home.

As several of you know (and then there are those of you who have no clue,) every October I raise awareness for Down syndrome in honor of my daughter who carries 3 copies of  Chromosome 21. My oldest daughter and I began her Youtube awareness channel just two years ago in hopes of helping others who may be facing the same diagnosis realize that they will be blessed each and every day by these warm and loving smiles. Each year, on Abrielle's birthday (October 16th) we post a birthday video sharing photos and videos of her year of accomplishments and milestones; this year will be hard because she has had SO many!

However, this year in addition to her inspirational video, we will be doing something else and we will need your help. Without the Ronald McDonald house, I would not have been able to be with my monkey every day while she was kept in the hospital... this place is amazing and operates solely on the donations of others. With that being said, I will be hosting a donation page in honor of Abrielle's 4th birthday for the entire month of October... which is also officially Down syndrome Awareness Month. All proceeds will go directly to the Ronald McDonald House of Tampa, where I stayed for 7 days. I not only feel she was born a month early on purpose... I believe that I was supposed to do something with that.

Please watch for my special blog post on October 1st. I ask in advance for you to help us make October a month of giving to a wonderful cause in honor of the many lives that are lost while parent's hope for good news in this special house for the families of ill children by sharing this post as well as the one I will post on October 1st. Please, help us gain momentum before it even starts...

In honor of this upcoming cause, here is the very first inspirational video we ever posted on Abrielle's Youtube channel... 

click here to watch
"DETERMINATION"

XOXO 

Shells!

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Jumping Down syndrome Hurdles

When I was twenty weeks pregnant with my youngest daughter Abrielle, I found out she would be born with Down syndrome. I knew very little about the diagnosis at the time; not realizing that there were differences in every child who had it, just as there are differences with every child that is typical. I was naive as many are about what this meant exactly, but because I felt like God was blessing me in a way that would eventually define itself, I cried only briefly and trusted wholeheartedly from that point on.

I learned as much as I could about Down syndrome and everything I was reading led me to believe that they all had health issues; that they all were born with unhealthy hearts requiring surgery, that they would have digestive issues, bad eyesight, only two lines on their palms, weird toes, crooked teeth, bad hearing and weak muscle tone. As I learned more I knew that time, which I did not really have  would be needed for a child with all of these issues, but I trusted that I would not be given more than I could handle. After all, I had a difficult road thus far and had survived. I always had what I needed even if my wants were forfeited for another day.

When Abrielle was born, she had very few of the "typical" DS markers. She had VERY strong muscle tone, normal toes, typical lines on her hands, 20/20 vision, and acute hearing. She was born with a very small hole in her heart (ASD) that was the caused by her being one month early... not from having Down syndrome; it healed itself within 3 months and now she has a perfectly normal heart that never required surgery. Her only health issues are her sensitivity to dairy and seasonal allergies, both of which she gets from me. (lucky her!)

I have worked with Abrielle so much, I never treated her any different than my other three children, and I really feel that because of that she feels no different. Sure, she learns slower, and she is not talking yet at age 3, but she is tries harder and harder every day with each little push she gets. It is important to embrace Down syndrome as something that will create hurdles, but hurdles are made to jump and these children/adults can jump just as high and often even higher if you encourage them to do so. I have 4 children, and Abrielle aka "Brie"  celebrates her triumphs with huge smiles and an excited applause... and takes every defeat with stride. She is as proud of herself as we are of her, and that  is such a joy to watch.

When adversity paints itself into your life, you have two choices... you can overcome it or allow it to consume you, bathing you with defeat. You can choose the easy way out or take the long road home and enjoy the scenery. It's not always going to be easy... it may NEVER be easy but does that mean you should quit? NO! Absolutely not! If you quit you will never know victory, and if you never know victory you will never understand the purpose of defeat.

Although this video of Abrielle is old... (I think she was a little over 1 year old at the time) it is still by far one of the most inspiring videos I have seen, and it's not because she is my little girl. As you watch it remember this; she has every reason to give up... but because I refuse to let her know that she just keeps trying... we can all learn from that.

CLICK HERE TO SEE BRIE'S VIDEO 

"DETERMINATION"

http://youtu.be/jcMQ6-vfRzg

God DID give me more than I can handle... more love, more smiles, more lessons, and more to share by presenting me with this precious gift of a special child. Her existence has taught me more and changed me more than I ever thought possible. She WAS a blessing... truly, the most amazing one of my life.

Over the next few weeks I will be preparing her annual video for World Down syndrome Day, (3-21) and I cannot WAIT to share it with you. Until then, I hope that you enjoyED this video and share this blog post with everyone you know. There is power in numbers... and in order to change the way people see these special people who have been put here on earth to change our hearts, we must share the stories, share the defeat, share the joys and share the grief of what happens to us in our lives.

Wishing you all a great evening, a warm heart, and a glimmer of hope when you need it most!

xoxo

~Shells~