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Having a special needs child impacts the entire family.

Our son has definitely changed the way our family does things. We have to think about whether or not our son will be able to participate. Our family outings are based around tube feeding times, and the outings have to include a lot of medical items such as feeding tubes, supplies, feeds, diapers, etc. Getting out of the house is a challenge. We often don't go to places including school functions for our other children if our son is sick or if it is an environment that is not accessible for him.

Many often wonder how our other children feel about their lives being impacted by having a special needs brother.

Their lives have been altered; that cannot be denied, and they have had to make sacrifices. We have not been able to attend every class party or every field trip. They have had to spend snow days with grandparents, because of doctor appointments. We have had to be separated at holidays because of illness.

But our children have also been given opportunities that they wouldn't have had without a special needs brother.

They have traveled around the country for medical conferences. Last year alone they went to 11 National Parks. The have seen more of this country than either my husband or I saw combined at their same ages.

Our children have learned unconditional love. Their brother loves them. He lights up when they enter the room. He giggles as they play catch with him. He even giggles looking at their feet in the rocking chair. They love him and celebrate all of his accomplishments.

Our children have learned patience. There are many times when they have had to wait because their brother is in the middle of vomiting, busy going to the bathroom, or mom is on the phone with the insurance company for the 40th hour that week. 

They have learned independence. Let’s face it, that whole patience thing can be hard, so when they are hungry, they make themselves food. They have also learned how to help out with chores around the house. They are in charge of helping with laundry, cooking, and cleaning. These are all things that I wish I would have learned at a young age. It would have made the transition into adulthood much easier.

They have learned a lot about the medical field. They already know how to give a tube feeding, how to manage a vomiting child, how to change a diaper, and a lot of terminology. 

They have learned that miracles can happen. Their brother was not "supposed" to live, but he is alive and thriving.

They have learned the value of family. They see how much we fight for each one of them. They see our passion for all that we do. They see how excited we get when we are able to watch videos of school functions we have had to miss. We have had long conversations about the importance of being together.

They have learned the value of every human life. I have watched our second child defend those that are different to his friends at school. He encourages those with disabilities to be his friends because "they just have" a diagnosis like his brother. Our oldest isn't as bold, but his special needs brother has taught him to be tender-hearted.

Despite their sacrifices, they will immediately claim love for their brother. They do not see him as a burden. They see him as their brother. They love him. They are proud of him, and they want to help him be the best that he can be. They also know that we love them just as much as we love him. They have desires of their own, and we strive to help them achieve their goals…just like their special needs brother.

Terra Garst

Terra has lived in Omaha her entire life with her husband and four sons. She enjoys being a stay-at-home mom and driver for all her children's events. She is a nurse and uses creativity to get things done! Terra is Nebraska's state chapter chair for Support Organization for Trisomy 18, 13, and related disorders (SOFT) as well as their prenatal outreach contact. She also volunteers for Hope for Trisomy. ...

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