Alyx is the light of our family. She has taught all of us about unconditional love and acceptance, that anything in life is possible, that hard work does pay off, and that it’s ok to take your time, to stop and smell the roses.

As I sit here pondering what I’m going to write about Alyx, I hear the song “How Great Is Our God” by Chris Tomlin. How fitting!

Alyxandrea Vivian was born on July 31, 2006, at 11:34am. Shortly after delivery, we were told she had Trisomy 21 (Down syndrome). I can’t say I was shocked, nor was I upset by the news. It was almost like I had suspected it all along even though we were completely clueless. We already adored her, and so did her two big sisters.

Alyx was placed in the NICU less then 24 hours after her birth. She had two holes in her heart. I remember being scared for her because we didn’t know what was going to happen. Wes grabbed my hand to pray for her after we found out she was taken to the NICU in the middle of the night. After thanking God for the many blessing He has and does bestow on us, Wes said the words I will never forget, “Lord, we want to keep her.” How great is our God, to have given us the gift of such a sweet little angel? Very Great!

Alyx was discharged after six days in the NICU! Then, showing us even more of God’s greatness, Alyx was cleared at the cardiologist at one year because both holes in her heart had closed on their own! How great is Our God?

I think the biggest blessing we received was Alyx’s placement in the Orange Class at The Little Light House. She adjusted well. She loves Miss Kate and Miss Amy. In fact, Mamie (Amy) was one of her first words. Alyx’s love for the LLH became evident when we would get close to the school and she would raise her hands and shake them, while yelling something that sounded like “lujah.” I asked Miss Kate what that meant and she explained that Alyx was signing and saying “Hallelujah!”

It got to the point, where I couldn’t get her out of the car fast enough in the morning and she would get upset when I put her in the car in the afternoon. Again, I have to exclaim, How great is our God to give Miss Marcia and everything she needed to start this wonderful school!

Alyx had just turned 2-years-old when she started at the LLH in August of 2008. She wasn’t walking yet, but she was crawling and sitting up. She would also babble some, but not say very many words. Now days, Alyx is singing songs from school on the way home. I may not completely understand what she is singing, but she is singing and signing none the less!

She loves to line her baby dolls up and “teach” them. She also loves to “walk” them by holding their hands and walking them across the room. I think that is the only time she is walking at a slower pace! Her teachers have taught her how to recognize her name and her picture. On occasion she can also be heard singing her alphabet, while writing on the Magna-Doodle at home.

I know this is just the beginning of Alyx’s story. She will face many challenges in her life, just like my other three daughters will. And she will accomplish many great things and meet milestones that some people may not expect of her. And I know when I look back to the beginning chapters of her story, The Little Light House will be more than just a school she attended. It’s an extended family that will rejoice with us in her future accomplishments. I know that as much as we love the LLH, they love each and every child that walks through those doors just as much.

Our journey began the night of April 25, 2006. We had already been ordered to the hospital on bed rest for a few weeks, as we were expecting multiple babies. Little did we know one of the three little girls, Avree, was getting short changed by her sisters on nutrients that mom was passing along to them.

Around 10 p.m., we had mom prepped and ready to go. One by one the three little girls entered this world, all under two pounds with Avree being the smallest at 1 lb. 9 oz. and only 26 weeks gestation.

There were teams of nurses and doctors assigned to each little girl, and after a short time of observation in the delivery room they were all rushed away in their “incubators” (as dad still calls them) to the NICU, which would be there home for the next few months. We were told by the doctors that night that the girls would have a long road ahead of them due to their prematurity, but we stood ready to do whatever was needed to make sure they made it.

I still remember our first visit to the NICU to visit the girls. They were so tiny, but these were our little girls and we were so ready for them to join our family. Through the first few weeks, all the girls had to have PDA litigations on their hearts to help close an artery that normally closes on its own in full term babies, and we had Retinopathy Of Prematurity surgery on their eyes to stop abnormal blood vessel development in the retina. After a few days of monitoring it became evident that Avree’s brain bleed was the worst, and they diagnosed her with hydrocephalus and informed us they would need to insert an External Ventricular Drain to help drain the excess spinal fluid that was building up on her brain. After a few EVD’s were inserted over the next few weeks to help the fluid drain, the doctors said Avree had contracted bacterial meningitis on her brain from the EVD. They called down to OU Medical Center in Oklahoma City and asked their neurosurgery team to take on Avree in this fight for her life. They accepted!

In addition to caring for Avree’s sisters who had recently come home, as well as their big brother who was a trooper through all of this, we added a trip to OKC every weekend for six weeks. Our prayers were answered, and six weeks later we went down for the surgery. Though the procedure went well, the doctors shared with us that the bacterial meningitis had damaged two areas of Avree’s brain in the areas which controls vision. Avree’s development was going to be different than her sisters but to what extent they could not tell us. Though this was not the best of news to us, we were excited to take her home for the first time, six months after she was born. Once we were home to start our wild and crazy life of kids, kids, kids, we could tell that Avree was significantly behind her sisters in development. We were told we should seek out some type of therapy for her. This is where we first heard of The Little Light House and put Avree’s name on the waiting list. She began her first year in August 2008.

Our road with Avree and her sisters has taken us through many doctors’ appointments and hospital stays. With the love and support of the teachers, therapists and volunteers at the Little Light House and her team of doctors, they have helped Avree make strides beyond belief. We were told she may never walk or talk and that her vision would be absolutely none due to the infection. So now, to see her walk and talk your ear off today, she is nothing short of a miracle and we couldn’t be more thankful!