Our Jady

From the writings of Jadyn's father, Josh...

"Jadyn was brought into this world on March 9, 2007. She was introduced to us in about 2 secs. The nurse that was holding Jadyn called for assistance from another nurse. I asked the doctor if everything was okay and he assured me it was. Jadyn left the room and was taken to get what we thought was "cleaned up".

Then several nurses and docs came into our room to deliver the most concerning news we have ever been faced with. "Your baby is abnormal and has some deformities". Wow. Leigh looked over at me and just began to cry. I assured her that we were going to be fine. Leigh didn't get to see our baby again until Life Flight brought her in the postpartum room about 4 hours after delivery. Leigh waved bye to her baby not knowing what the future had in store.

The next day, after the longest night in the world, we awoke hoping to know we were dreaming. No. We were still in the hospital. We left Bryan headed for Houston in search of our lost cub. We arrived at a fortress called Texas Children's. We walked in to find our baby with tubes and buttons and gadgets all over her. We did not know what to do for our baby. There was nothing we could do. God was in control...Complete control. We had no option but to surrender to Him and His plan.

Weeks have gone by our little princess is still striving to survive. She still is fighting. We were finally diagnosed with CHARGE Syndrome. Finally an answer. But with this answer came more questions.

We are still following our leader and we know that through Him all things are possible."

Jadyn's father wrote this not knowing that their next four months as new parents would be in a hospital and one of the most feared times in their lives.

Jadyn is my beautiful, now 3 years old, niece and is an absolute miracle.  You would not believe how far this family has come from day one.  They are such an inspiration!  How in the world would they have ever guessed that God had the strangest word, CHARGE, in store for them?

Pictures from a CHARGE retreat:

CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. Swallowing and breathing problems make life difficult. Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.

Hearing all of this described to you, in a tiny little room, surrounded by a dozen medical doctors is the most overwhelming and devastating information a parent or family member can get.  However, after three years, Jadyn has been our little miracle.  She is amazing and achieving new tasks every day!  She signs with her sweet little fingers faster than any adult that I know.  It's amazing!  We heard so many things that we didn't want to hear. "Jadyn will be brain dead".   "Jadyn will never walk".   "Jadyn will never talk". "Jadyn will never hear".   "Jadyn will never understand anything."  Well, SHE HAS PROVED THEM WRONG!

Jadyn has understood with those big, brown eyes from day one.  Jadyn hears.  Jadyn talks- she says WOW!  Jadyn crawls.  Jadyn stands.  Jadyn uses sign language.  Jadyn writes and colors.  Jadyn walks with a walker.  The best of all, Jadyn gives hugs and kisses.  There is nothing that our Jady can't do or accomplish because with God everything is possible!

Some of Jadyn's firsts...

Jadyn's first Halloween as a princess.  Of course!

Jadyn's first birthday party.  We went all out!  Her mother made so many wonderful, pink cupcakes!

Jadyn's first 4th of July Parade.

Jadyn's first time to stand with Mommy's help and her first walker.

Jadyn's first baby doll.  Given to her by her "FAVORITE" aunt.  She does get so excited when she sees me!

Jadyn's first "big girl chair".

That is the inspiring story of my brother -in-law, sister-in-law and their sweet, little daughter, Jadyn.  They continue to be strong and be leaders for other families with children who have CHARGE.  Just last year they lead a CHARGE retreat in their hometown for about 20 families and this month Josh is speaking at a rally to give educators a view into the world of a Charge parent's fears and expectations for their child's education.

They continue to amaze me and Jadyn keeps striving and just breaking every barrier.  We are so excited to be on this journey with them.  Jadyn is a huge part of my family's memories and she has taught my children that there is nothing impossible as long as they try.

For more information on CHARGE Syndrome go to http://www.texaschargers.org/ or to follow Jadyn's journey go to http://www.caringbridge.org/visit/jadynfultz