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Spring 2019

Fall 2009 Table of Contents
Versión Español de este artículo (Spanish Version)

By Becky and Matthew Lowell, Parents, San Antonio , TX

Abstract: A family shares their experiences in attending their first International CHARGE Syndrome Conference this past July, and how the opportunity has impacted their lives.

Keywords: Family Wisdom, deafblind, CHARGE Syndrome, Texas CHARGERS, Inc., family training.

Laci Faith Lowell, our first and only child, was given the official CHARGE SYNDROME diagnosis in summer of 2008, a few days after her 2nd birthday. It was not alarming or upsetting, it would not change the way we thought of her or treated her, but it did open a whole new area of learning for us. We were familiar with each condition Laci had, many surgeries had been completed and therapies were in place, but we had never looked at it as a “collection”. We also lacked in the knowledge of what is yet to come—what we do NOT know.

A suggestion was made for us to attend the International CHARGE SYNDROME Conference in Chicago scheduled for July 09. We were excited to attend, but struggled with whether to take Laci with us or leave her with family. The decision was made to leave Laci at home; it would be our first time away from her and alone as a couple in a long while. We left San Antonio, TX on Thursday, July 24 for the 9th International CHARGE SYNDROME Conference in Indian Lakes Resort, Bloomingdale, IL.

We arrived at the hotel and we knew we were in the right place! Children who resembled our Laci were there and we immediately wished we had her along. Thursday night we settled in with anticipation of what the weekend would bring. The Conference started Friday with a wonderful breakfast provided for all in attendance. We were immediately approached by fellow Texans and again felt at home. The day started with a very interesting and appropriate presentation by Bryan D. Hall, MD, on how “it” all started, how the CHARGE Association (Syndrome) was first identified. The day continued with 4 breakout sessions with excellent information presented. Saturday started in a similar manner with another four breakout sessions to attend. Each breakout Saturday night ended with a carnival, a session had at least 3 different topics to great dinner, silent auction, and a special choose from, everything from new family sessions to cochlear implant  study results to what is the R & G in CHARGE. A few sessions my husband and I attended together; others we separated to get more information at once.  Being parents of a 3 year old, we felt blessed to have some of the sessions be a part of our past—one called the NICU experience and another important topic, anesthesia manage-ment—and did not feel the need to attend. Others we hope to tackle at a later date in our journey with Laci, such as one involving a positive vision for employment. Everyone in attendance is always in a different place with their own child, so a number of talks are always appropriate and useful. Some of the sessions that hit home with us included topics like what balance is and how it works, parenting a child with CHARGE SYNDROME, vision issues, and look at me now—a look into a family with an older CHARGE child.

We came home to Texas with questions and answers for our team of doctors and therapists. Laci is now wearing shoe inserts to help with her ankle stability and balance. We have also looked into some special needs planning to benefit her future due to information provided at the conference. Some of the greatest information was passed around between family and parents as we sat together throughout the weekend.

Saturday night ended with a carnival, a great dinner, silent auction, and a special concert by Rachel Coleman of the “Signing Times” series. We really enjoyed the music and know the great benefit sign language has played in our lives as well.

(Editor’s Note: This event was hosted by our very own Texas CHARGERS, Inc. and was noted as a huge success by all in attendance. Thank you, Texas CHARGERS, for sharing with the rest of the country this much enjoyed highlight of the conference!)

With all the activities, sessions to attend, and people to meet, one thing the conference did for us was remind us we are NOT alone. As we looked around at a room full of people having some of the same emotions we do, going through some of the same struggles we do, we saw smiles and laughter. The world was NOT passing us by, but we were all moving right along with it— just with a lot more heart, sacrifice, faith in life, and love for our kids.

The conference opened our eyes to a lot of things affecting our Laci now and I know the conference will be a wealth of knowledge to us in the future as well. We plan to attend the next one in the summer of 2011 in Florida, this time with Laci leading the way. Special thanks to the Texas Deafblind Project and DARS for helping us attend the conference this year, and for all the wonderful work they do for our children.